Talk:Autism

Remove "Disorder" and add "Coocuring Conditions "

Please reframe behavioral deficit-centric influence of the autism industrial complex to honor the lived experience of autistic people with many different manifestations. Do not assume that lack of speaking means lack of intelligence. Furthermore, consider root somatosensory causes of so-called social communication difficulties. Consider the eyes of the neurodominant beholders. 2600:1014:B131:5BCD:0:10:B10B:DA01 (talk) 19:23, 8 October 2024 (UTC)

{{support|strong}} Agree Please remove the terms like "Disorder", "Risk" and other pathologizing terms to describe Autistic population. Highlight the Social model of Disability, Reasonable Accommodation, accessibility, Curb-cut effect,, Alternative-Augmentative communications, etc. that actually helps wellbeing of Autistic population.

Autism is a neurodevelopmental disorder. This is the global scientific consensus. See the ICD-11, the World Health Organisation and the DSM-5, as examples, all cited in the article to substantiate the classification. So it is to be kept.

Various approaches have been used to establish this fact. A very useful one stipulates that there must be scientifically established evidence that those suffering the condition have a significant deviation or deficit in or failure of a physical or psychological mechanism that is universal to humans. That is, all humans normally would be expected, regardless of culture, to have developed that neuropsychological trait or ability.

And there must be equally incontrovertible scientific evidence that this serious deficiency or deviation leads to harm to the individual. Harm is established through evidence of increased mortality, morbidity, or impairment in the major life activities required of one’s developmental stage in life. Major life activities are those domains of functioning such as education, social relationships, family functioning, independence and self-sufficiency, and occupational functioning that all humans of that developmental level are expected to perform.

As attested by the scientific consensus, autism candidly meets such criteria and thus is a neurodevelopmental disorder. Димитрий Улянов Иванов (talk) 22:13, 8 October 2024 (UTC)

It is incorrect to suggest that there is a general scientific consensus that autism is a disorder. The neurodiversity perspective is taken seriously by a large and growing number of researchers, and contradicts the assumption that differences like autism should be seen as disorders.

See for example this Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science; the journal Neurodiversity; Wiley's 38-journal neurodiversity special issue; or indeed the 31,600 Google Scholar results for the term. Oolong (talk) 16:41, 2 November 2024 (UTC)

It is not taken seriously by a "large and growing number of researchers". Autism is classified as a neurodevelopmental disorder by the ICD-11, World Health Organization, DSM-5, NICE etc because it is defined by the presence of impairment, not merely symptoms. That is thereby citing the worldwide scientific consensus, and that of clinicians who unanimously use the above diagnostic criteria. In response to the article you cited, the lede of the article further states that:

"On the contrary, other scientists argue that ASD impairs functioning in many ways that are inherent to the disorder itself and unrelated to society.[17][18]"

The neurodiversity movement is a political, not a scientific, movement. Many people also subscribe to the anti-psychiatry movement, whose presence doesn't negate the scientific consensus on the validty of psychiatry as it's largely political in nature. Димитрий Улянов Иванов (talk) 17:28, 2 November 2024 (UTC)

The neurodiversity movement is absolutely a scientific (or perhaps more accurately, meta-scientific) movement as well as a political one. The choice of the term 'neurodiversity paradigm' is neither accidental, nor inaccurate.

You are simply incorrect to claim that neurodiversity is not taken taken seriously by a large and growing number of researchers, which should already have been clear from my comment above. Oolong (talk) 15:35, 3 November 2024 (UTC)

I have addressed the above reply in another page, but I will reprint it here so others don't miss it:

I am not "exaggerating the consensus on this". The examples given in the article currently are as follows:

The ICD-11 and World Health Organization (WHO) conclude that autism is a neurodevelopmental disorder.

The DSM-5 and American Psychological Association (APA) conclude that autism is a neurodevelopmental disorder.

The UK National Institute for Clinical Excellence (NICE) Guidelines conclude that autism is a neurodevelopmental/developmental disorder.

Because these are guidelines that are globally standardised for scientists and diagnosticians and are developed by a unification of thousands of researchers, they reflect the global scientific consensus on the matter. Even International Consensus Statements exist attesting to the fact that autism is a neurodevelopmental disorder (e.g. Cole et al., 2019).

Blog posts are not peer-reviewed, scientific papers and thus are not "reputable" in comparison to the scientific literature. Regarding the other two citations, as I have already addressed, they are advocating for something that is not currently established. Thus, they are not sources that can overturn the statement that autism is a neurodevelopmental disorder as it's currently defined. In fact, several peer-reviewed papers cited in this Wikipedia article criticise such advocacy papers on their logic that ASD is not a disorder, concluding that it indeed is in accordance with guidelines worldwide. So even in the context of advocacy papers, your opinion has not been demonstrated to represent a large number of researchers by any means.

Unfortunately, none of this was addressed in your comment. I am having to essentially reiterate myself here.

The Wikipedia article does a good job of balancing the debate on whether the term should be changed in the future, so I don't see what your arguing for exactly to change.

The text-book you cited appears to - again - be implicitly advocating for a change in terms. It is also based on faulty logic. ASD is not incompatible with the concept of neurodiversity. There is indeed an underlying dimensional spectrum to ASD (which is why it's called autism spectrum disorder) but the term disorder is defined by the presence of impairment, wherein we draw the line and make a categorical diagnosis. There really is no contradiction there. The claim that it's "ableist" is just a subjective proclamation. On the contrary, continuing to espouse that autism is not a neurodevelopmental spectrum disorder may be offensive to those who actually experience impairment and dislike being obfuscated with mere diversity. This is for at least two reasons. First, traits of autism is not autism; you must be significantly impaired by those symptoms to be diagnosable (which is why it’s a disorder). Second, ‘diversity’ typically implies positivity and thus may be offensive to those who do not view it as such. Димитрий Улянов Иванов (talk) 17:16, 3 November 2024 (UTC)

Too often people in society have the “too long, didn't read” mentality; which only breeds ignorance. I perceive you have the intelligence coupled with patience enough to read the whole response. There was a time when all medical text considered hysteria. An actual medical condition that was mostly suffered by females. There was a time when there was almost no scientific reference to many of the health issues female face. And I'm talking in the 1900s. Something can be classified a certain way in the ISD for years, while the debate of the issue rages on before proper terminology, and understanding is updated. As the previous person stated, there is not consensus on the condition itself, much less its causes. For you to state that there is universal consensus on almost anything scientific is to show an ignorance of science itself. Also, the neurodiversity movement, as you call it; has nothing to do with politics. Unless by political, you mean from the sides that continue to disregard emerging understanding of the condition. And, much of what is often regarded as the neurodiversity movement, are actual neurodivergents. The people who all of this affects the most. It has only been within recent decades, and by this, I mean the last two; that understanding of the condition has grown or even been accepted widely in the medical community, much more society at large (who are often the last to know this information). As you perfectly ensample. The only ones that feel obfuscated, by the term "diversity" are those that continue to accept archaic ideas, that have not only been proven incorrect, but that are widely disavowed by actual medical professionals and the scientific community at large. The reason that it is a spectrum is because comorbid conditions can not only influence how the condition manifest itself, but also how the person is impacted. It has nothing to do with the severity of the condition itself. Your ignorance of what severely impacts someone is also very telling. I knew someone who died of cancer. Many thought it to be quite sudden. The only thing is, that person didn't die suddenly. They had known they had cancer for years. But, it would be found out that when the cancer was discovered, it had already metastasized through much of that region. Though this person visited doctors often for quite some time before the diagnosis, complaining of problems to the affected area (all of which severely impacted them). They were often turned away as being a “hysterical” woman or a drug seeker. The excuse used was the person looking healthy and the limited non-corresponding tests coming back normal. The problem was missed for years, until it had almost become too late for treatment. This is a problem in the medical community that is acknowledged by the medical community. For quite some time there has been inherent biases in the medical community. Though advancements have stemmed much of that, much still remains. Many newly diagnosed neurodivergents are often people diagnosed much later in life. All because they did not have other comorbid conditions that presented symptoms that were more easily recognizable, and having the ability to function to an extent in society in what they perceive as a normal manner. But, all of the years that person lived, they were being severely impacted. Most were often neglected in their need and left to adjust to the world on their own. And, this is a risk for developing other comorbid conditions; like depression or other mental issues. Nevermind the high suicide rates among autistic people; a clear correlation to society's ignorance and the inherent bigotry that still pervades in medicine. People on the spectrum often face abuse form both society and by medical professionals they seek help from. A psychiatrist once told me, that psychiatry believes that it has a clear answer for many mental disorders. So, it is easy for many to call a condition that is not well understood, and hard to treat something else that is easier. And, doctors are not immune from misdiagnosing patients thus. And, he is right. I will give two more very quick examples from personal experience. I was born with a condition called ehlers-danlos syndrome. It has severely impacted my life in health. Because it has no clear manifestations. At first, it is easy to misdiagnose. And to miss entirely and since the person often looks perfectly normal. This is how they are often pushed to interact with society. So, they learn to mask their pain. The ignorant believes that the ability to mask means that it is not impacting, or it is not detrimental. In spite of a lifetime of sublaxations, dislocations, cardiac anomalies, pain and other associate issues; I was not diagnosed until after I was 30 with a condition that I was born with. By which time, it had gotten to a point of not only severely impacting my life, but completely shutting it down. I had one doctor that had the audacity to yell (not just state loudly, but to yell) in the middle of the office waiting room what difference does it make if he misdiagnosed me with a condition he can treat, since he can’t treat the condition I actually have. Let that sink in… The second: when I started school, I had to have a neuropsych evaluation. It was demanded by the Board of Education for admittance. The reason is because I was 3 years old. It had to be proven that was both mentally, as well as intellectually prepared to start school. And, to do so with children that could be much older than me. I was certified a genius. A certified child prodigy; when I started school. I would change school later during elementary years. The experience was extremely jarring. The abuse I would receive from both teachers and children alike, caused me to shut down and manifest attributes that caused teachers to demand I be sent back for another neuropsych eval. At this time, I would have not only had been through the severely traumatizing experience of the change and all that it brought, but I had also experienced trauma outside of that in my everyday life. Whatever the exact same doctor that diagnosed me as a genius child prodigy saw, it caused him to decide to change my diagnosis to savant. And, this was only because one of my parents fought against diagnosing me as autistic. You see, there was also a time; and this was the time, when autism was diagnosed as a form of schizophrenia. Knowing this, as well as knowing the issues faced by my neurodivergent parent; they fought to have the diagnoses struck from my record. For that reason alone, the doctor struck the fact that I was a certified genius from my record as well. After which, I would receive heightened abuse from some teachers who found it proper to do so because now they had proof I wasn't a genius. I was just an idiot retard, even if it wasn't on my record. Would you like to take a good guess on the severity of impact on my life from just these two examples? And, these are actually mild… HarmonyA8 (talk) 04:44, 11 November 2024 (UTC)

See the talk page section I recently made called “Should autism continue to be described as a neurodevelopmental disorder characterised by symptoms, impairment and severity?”. In there, I provide a systematic review of the scientific evidence. The totality of international consensus statements, guidelines and meta-analyses clearly show a unanimous scientific consensus on the fact that ASD is a neurodevelopmental disorder characterised by symptoms, impairments and autism itself indeed has varying severity levels. Unfortunately, no one critiquing this is actually willing to discuss the mountains of references.

Moreover, Wikipedia guidelines I cited indicate this wording must be kept per the pertinence of those sources relative to public opinion.

I will not be reiterating myself here because I have already addressed some of these objections elsewhere and in extensively in that new talk section. Димитрий Улянов Иванов (talk) 08:40, 11 November 2024 (UTC)

Just to make a second point that the neurodiversity movement and its terminology it’s trying to impose are not scientific, they’re indeed political. They were coined and intended for the neurodiversity movement, which came out of autism activism. They've always been political.

See these blog posts by Judy Singer: https://neurodiversity2.blogspot.com/2021/02/neurodiversity-its-political-not.html?m=1

“Is Neurodiversity a scientific term? No, it's a political term”.

If she, the person who coined the term and basically launched the movement, acknowledges these issues, that we point out, then maybe you should give that some thought. Димитрий Улянов Иванов (talk) 12:45, 11 November 2024 (UTC)

Hi, first, it's extremely inaccurate to suggest that Judy Singer "launched the movement". What she did was to form a portmanteau out of a phrase and idea that was already in use on a mailing list she was a part of [1] and use it in her undergraduate dissertation, which was later published as a book chapter. She has occasionally made contributions to debates since. I agree with her on some things, disagree on others. She's hardly a leading light of the movement, and was almost entirely absent from it for around 20 years. I state these things simply to correct the factual record and provide context.

The article you cite is not bad - it makes some decent points, and there's not much that I actively disagree with. Again, the idea of neurodiversity is most accurately meta-scientific, rather than scientific as such: that is, it's about science (among other things). I don't think Judy would dispute this. As she says in the article you cite, on some level it's a truism scientifically: yes, "there is a virtually infinite diversity of humans on the planet, with infinitely diverse minds complexified further by experience in equally diverse bodies."

Accepting this diversity has many scientific implications, however. I'm just going to dump links to some articles discussing some of these, because I don't have that much time right now.

• https://doi.org/10.1177/13623613221129123
• https://onlinelibrary.wiley.com/doi/full/10.1002/brx2.70
• https://acamh.onlinelibrary.wiley.com/doi/full/10.1111/jcpp.13886
• https://onlinelibrary.wiley.com/doi/full/10.1111/cogs.13255
• https://www.mdpi.com/2673-8392/3/3/70

Oolong (talk) 11:14, 12 November 2024 (UTC)

If it isn't clear already: 'neurodiversity' is not scientific in exactly the same sense that 'disorder' is not scientific. Oolong (talk) 14:45, 12 November 2024 (UTC)

Thanks for providing these links but the discussion is diverting greatly from the main point of the issue. I would just like to, once again, summarise the point of my involvement here as in retrospect I don't think I've clarified the main issue at hand well and I apologise for that. I would ultimately like to reach a more definitive agreement on some of these issues.

So, the reason why I refer you to that new talk page section is because I keep seeing statements like "there is no scientific consensus on these issues" with people advocating the article be changed to not refer to autism as a neurodevelopmental disorder. Yet, the mountains of evidence I referenced there shows there is indeed a unanimous scientific consensus globally on the fact that autism is a neurodevelopmental disorder characterised by symptoms, impairments and varying severity levels because the evidence indicating it is so overwhelming. Wikipedia guidelines indicate that the peer-reviewed guidelines, diagnostic criteria, systematic reviews and consensus statements I cited are to be used in substantiating those classifications and that public opinion (e.g., blog posts or advocacy papers) in no way sway that determination. Therefore, this Wikipedia article must continue to refer to autism as such.

If you believe the Wikipedia article should instead frame autism as a mere neurodiversity and/or not being characterised with symptoms/impairments/severity, or something else in contrary to those references, please justify your reasoning under that talk page, accounting for all the citations I provided.

It's understandable that some may disagree personally with the classification and I don't want to invalidate the existence of advocacy papers or blog posts, but as things stand now, it would be erroneous to deviate the Wikipedia article from the scientific consensus. Димитрий Улянов Иванов (talk) 15:09, 12 November 2024 (UTC)

I've said this a few times now: you're greatly overstating your case when you say things like "there is indeed a unanimous scientific consensus globally".

Maybe it's autistic literal-mindedness, but when you make objectively false statements like this and stand by them after prevented with evidence that refutes them, I find it very difficult to engage with the rest of what you're writing. Oolong (talk) 18:16, 13 November 2024 (UTC)

Once again, I refer you to the recent talk page section I made where I cited a mountain of references, including consensus statements, and indications from Wikipedia guidelines. So far, you haven’t acknowledged any of that at all and thus are in no position to claim it’s “overstated”. That’s essentially the point I’m repeatedly having to make here. So if you believe it indeed is not a scientific consensus in contrary to the evidence, please actually address it. Thank you. Димитрий Улянов Иванов (talk) 18:29, 13 November 2024 (UTC)

I think perhaps we are talking at cross-purposes.

The thing is that you have insisted on denying what seem to me to be irrefutably accurate statements like 'The neurodiversity perspective is taken seriously by a large and growing number of researchers'.

I provided ample evidence for this, and your response reads something like 'sure, one of the world's biggest scientific publishers is doing a 38-journal special issue on this topic, which is mentioned in more than 30,000 peer-reviewed papers, but I still maintain that no actual scientist agrees with one of its central conclusions, that "disorder" is at best a misleading term when applied to autism, despite two of the world's leading autism researchers explicitly disclaiming the term in their 2019 textbook on the topic.'

I'm sure we could find some common ground if we look, but can you see how the above doesn't seem like a tenable position?

I assume there must be some miscommunication here, perhaps caused by us having different meanings in mind for unanimity, consensus or maybe scientist? Oolong (talk) 19:47, 18 November 2024 (UTC)

On the contrary, it seems to me that you are completely ignoring the existence and validity of a mountain of scientific literature I cited consisting of many national guidelines around the world, consensus statements, systematic reviews, reports from professional associations, and standardised international diagnostic criteria that collectively indicate a clear and unanimous scientific consensus, worldwide, thereby effectively rebutting your narratives. Our critics can cite one text-book and a series of advocacy papers - some of which aren't peer reviewed, which I do indeed address in the talk page entitled "Should autism continue to be described as a neurodevelopmental disorder characterised by symptoms, impairment and severity?". The miscommunication in my view is that none of this is being addressed while I have addressed your references, so I'd like to conclude our discussion here unless you are able to provide countering evidence in the aforementioned talk section - or at least handle such criticism more respectfully by not ignoring it. Димитрий Улянов Иванов (talk) 22:41, 18 November 2024 (UTC)

So you're simply ignoring the large and growing number of researchers who disagree with you, and insisting that they don't count at all.

Evidently you are using between one and three of the words in the phrase "unanimous scientific consensus" in a non-standard sense.

Well, at least we have clarity now, I guess! Oolong (talk) 16:32, 19 November 2024 (UTC)

Wow, great rebuttal! The references you have previously provided - two advocacy papers and a text book that are contradicted by other rebuttals and textbooks, as I have shown, are certainly not representing "a large" and "growing" number of researchers. They do not stand any relevance whatsoever to the mountains of scientific literature cited, none of which you even acknowledge. Even the very Wikipedia article concludes that the ICD-11, for one example of many, represents a production "by professionals from 55 countries out of the 90 involved and is the most widely used reference worldwide" wherein autism is defined as a neurodevelopmental disorder characterised by symptoms, impairments, and varying severity levels.

The references you cited are also advocating for something that is not currently established. Thus, they are not sources that can overturn the global scientific consensus that autism is a neurodevelopmental disorder as it's currently defined.

I will now conclude the conversation here as you are clearly commenting in bad faith by avoiding all of the evidence. It's a shame, really, as this is not my opinion per se, despite it being treated like it is, considering I am just representing the conclusions of scientists around the world. Димитрий Улянов Иванов (talk) 21:39, 19 November 2024 (UTC)

I am highly irritated by your accusation of bad faith here. You have persistently claimed 'unanimous scientific consensus' for something about which many scientists evidently disagree, including leading figures in the field - and which is in any case fundamentally a terminological question (with philosophical and political dimensions) not meaningfully a scientific one. As far as I can see, all of the arguments you've made are either orthogonal to these points, or simply wrong.

I don't know why you were so determined to defend a position which is so clearly indefensible, and which is largely incidental to the actual content of the page under discussion. It seems like you could easily have taken a step back here, taken stock and realised you did not need to keep insisting on this; that it was time to fall back on a more accurate but weaker claim.

I assume that your overarching intention here is to see this entry improved, and to prevent it from being made worse? I share this goal. I'm bad at letting incorrect statements slide, but again: I'm sure we can find some common ground on this. Oolong (talk) 16:33, 2 December 2024 (UTC)

First thing first, a "leading figure" is a subjective statement of authority, a type of logical fallacy to substantiate relevance. I am unaware of a Wikipedia guideline defining special inclusion of claims based on the speaker's degree of publicity.

I stand by the accusation, at least at this time. Considering that I have cited an extensive series of the following peer-reviewed, secondary scientific sources, from numerous countries around the world:

- Scientific consensus statements

- International guidelines by professional associations/institutes

- Standardised diagnostic criteria

- Systematic reviews and meta-analyses

- Academic Textbooks

And that these are based on and in reference to a variety of scientific fields including symptomology, epidemiology, education, diagnosis, causes, neurobiology, societal interpretation, treatment and therapies etc. and cited how in some cases, are developed by a unification of scientists (such as the ICD-11).

Additionally, reports based on Wikipedia guidelines indicating how a scientific consensus is established in these articles and their importance were cited.

Yet, despite this, you kept reiterating that the scientific consensus is "exaggerated" or false, in a baselessly persistent way. This is evident as you do not even acknowledge - let alone address - any of the scientific references, and do so persistently after pointing this out, apparently to maintain your position. The only time you referred to them was to falsely claim they are "people using" the terms. For context, see 18:40, 28 November 2024 (UTC).

In contrast, I have actually addressed your references individually, showing how in many cases they are irrelevant or do not stand due weight in comparison.

Thus, I have sufficient grounds to conclude that you are acting in bad faith in regards to discussing these matters. Димитрий Улянов Иванов (talk) 21:32, 2 December 2024 (UTC)

So I'm an autism researcher (but not self citing here or anything) and I really should weigh in here because it seems like the fundamental debate here is hinging on whether the ICD and DSM are the most authoritative sources for a scientific consensus on autism - whether appealing to them trumps all other scientific sources. But ICD, DSM, etc., are not scientific documents at all, but clinical ones. Though this discussion refers to the expertise of the people crafting them, it's vital to understand that they represent a clinical consensus heavily affected by viewpoints of clinicians with no autism expertise - the working models used by clinicians generally outside autism can trump the consensus of specific communities of clinicians let alone scientists. For example, the last major revision to autism in the DSM-5 was affected by a demand from the larger clinical authorities that autism & other diagnoses in DSM-5 should have a severity scale, which was imposed on the workgroup crafting the definition for autism (see https://doi.org/10.1007/978-981-13-8437-0_13). Switching from a medical to a social or social-relational model of disability would be even more wildly out of line with the current guidelines of how DSM, ICD, etc. work: a clinical consensus of people OUTSIDE the autism field has determined that they follow the medical model, and working groups defining autism are picked to undertake the task of figuring out the best medical definition of autism. Not to determine what model of disability should be applied to autism.

So it's actually not accurate to say that the model of disability used by DSM and ICD represent a consensus of scientists with autism expertise. Whether these guidelines follow a medical, social, or social-relational model of disability, or deny disability, or whatever is largely NOT shaped by people in the autism field and really should not be used as evidence of scientific consensus on autism.

Also as a counterpoint to the ICD, let me direct you to the ICF, the International Classification of Functioning, which is an equally credible WHO thing. The ICF is following more of a social-relational perspective on disability than a medical one, and you'll see there's a broad group of autism scientists who have been developing ICF Core Sets for autism (https://doi.org/10.1177/13623613241228896, https://doi.org/10.1002/aur.1335) and the leader of that working group and other eminent scholars highlight that this allows for a perspective on autism more consistent with the neurodiversity approach (https://doi.org/10.1002/bies.202000254).

But in order to establish the scientific consensus of autism experts, I personally think it would ultimately be necessary to appeal to sources that are not shaped by the general working models used by people outside the autism field. You nominate several types of sources that may be suitable, such as scientific consensus statements on autism, academic textbooks (focusing on autism, not intro psych textbooks written by non-autism people), and systematic reviews. Ó.Dubhuir.of.Vulcan (talk) 21:18, 13 December 2024 (UTC)

Thanks for your comment, but you seem to be unintentionally, arguing with a strawman. I haven't relied on the DSM-5 or ICD-11, but cited numerous peer-reviewed guidelines, consensus statements, systematic reviews and meta-analyses, etc. from around the world, which unanimously recognise autism as a neurodevelopmental disorder. You are correct to mention that these are suitable. Please see: Talk:Autism#c-Димитрий Улянов Иванов-20241126131200-Oolong-20241126104700 for the references. Димитрий Улянов Иванов (talk) 21:26, 13 December 2024 (UTC)

Ah, thanks for redirecting me to that post - I hadn't seen your full list before - but you'll notice most of the sources you are drawing from are still clinical guidelines regarding diagnosis and sometimes treatment, so the same issues apply that they need to exist within this larger clinical field's norms. You also cite an ADHD consensus statement. There's nothing in your list that I would regard as an authoritative scientific consensus statement or systematic review on autism.

Interestingly the document that basically positions itself as the most recent major scientific consensus statement on autism, the Lancet Commission, contradicts itself and talks both about neurodiversity and autism as disorder (https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01541-5/fulltext). This statement was however certainly not universally accepted as authoritative in the autism field, with some seeing it as being influenced by anti-neurodiversity advocacy (notably, the advocate Alison Singer had a major role in it: https://www.ncsautism.org/blog//the-iacc-should-embrace-the-term-profound-autism), and it swiftly drew a rebuttal saying it should have been more neurodiversity-aligned (https://www.liebertpub.com/doi/10.1089/aut.2022.0017). Which I was not involved in, by the way - I'm still not self citing. Apart from illustrating the inherently political nature of these things at present, I think that very much shows an unsettled field lacking consensus.

Perhaps the most revealing and relevant article here is a systematic review of recent language usage in peer-reviewed autism journals. It says the breakdown was 70% traditional medical, 30% neuro-affirming (https://doi.org/10.1089/aut.2023.0030). Also note that was in 2018-2021 and the article also found that neuro-affirming language usage was increasing over time, so likely higher by now. Again, this sounds to me like pretty clear evidence of an unsettled and changing field, not of a stable and unambiguous pro-medical consensus. Ó.Dubhuir.of.Vulcan (talk) 22:24, 13 December 2024 (UTC)

Thank you for your informative, constructive reply and engaging with the literature. You make good points but I do not believe your response to the main issue stands up to serious inspection.

In my original comment, I did cite several scientific consensus statements and consensus guidelines on autism specifically, as well as systematic reviews, and other types of peer-reviewed sources. Most of the sources, including the guidelines, are not merely implicated with the contexts of medicine or diagnosis but originate from and cover a wide variety of subfields as well. That's not to say some of them are limited to diagnostic issues, but most of them are not. For evidence of this, please see: (1).

Potential Conflict of Interest with the above references: I have periodically served in NICE panels and have been a past member of their ADHD Guideline Committee. Recently, I have received honoraria and travel reimbursements from ESCAP.

I cited the International Consensus Statement on ADHD for several reasons, I don't recall each in the context of the discussion but partly for demonstrating what constitutes as a neurodevelopmental disorder (NDD) in general. I think another reason was in response to one person arguing that using terms like "disorder" or "symptoms" are exclusively meant for diseases, and the aforementioned consensus statement debunks this by showing its applicable to NDDs.

Potential Conflict of Interest: I am a member of the World Federation of ADHD, which helped compile the Faraone et al. International Consensus Statement on ADHD.

I very much appreciate that you are focusing on addressing the references individually and citing peer-reviewed sources, as Wikipedia policies mandate reliance on these when available. Regarding the debate in the literature you mention, I also found a review commentating on the Lancet publication (Bartov et al., 2023) that appears to recognise the suitability of terms like severity, disorders and symptoms.

I find it strange how some advocates, and scientists such as in the commentary of the consensus statement you cited, essentially delegate the impairments associated with autism entirely to comorbid disorders. For instance, their argument against the use of severity levels claim it's more accurate to state, e.g. autism with or without co-occurring intellectual disability (ID).

However, this disregards two facts. Autism is a spectrum disorder itself, not a strict dichotomy; and autism directly impairs people's functioning to varying degrees as a result. It's not the case that the degree of impairment is contingent on whether comorbid disorders are present, as autism itself contributes directly to impairment, variably according to the extremeness of the neurological diversity one exhibits. Thus, the severity of autism is an accurate concept as established in standardised diagnostic criteria and evidence-based guidelines. Many people with autism, who do not have comorbid ID, suffer substantially from their disorder and thus can be categorised as having a more severe form of autism relative to others with milder impairment.

Re. relative use of terminology, you cited the study by Bottini and colleagues. However, relying on Bottini et al. (2024) is problematic for several reasons.

First, it is a primary source. An astonishingly high number of primary data cannot be replicated, and the pertinence of their controls/methods require secondary evaluation, which makes reliance on primary sources generally dissuaded on Wikipedia.

For this reason alone, the source cannot be cited to support the notion that the field is "unsettled" on this matter. A set of secondary sources that consistently replicate such a finding - such as the ones I have been citing - would be preferable.

Second, it uses idiosyncratic procedures in assessing the evidence-base. Bottini and colleagues classify virtually every source that does not refer to autism as a mere difference as "not neuro-affirming". However, this is far from an objective dichotomy. Many people actually diagnosed with autism find this completely invalidating and trivialising, as it obfuscates them - who are impaired by their symptoms to be diagnosable with a disorder - with people who may just be symptomatic, but not impaired, and thus not diagnosable (see Shields et al. (2021) and Nelson (2021) for discussions). Bottini and colleagues also appear to conflate the terminology as being based on the context of medicine, when in fact they are not (1). Димитрий Улянов Иванов (talk) 15:48, 15 December 2024 (UTC)

So a few points here. First, I never said the things you were citing were diagnostic guidelines only. I pointed out they were CLINICAL guidelines, encompassing diagnosis as well as sometimes other related issues like intervention. As I've noted below (confusing with the multiple talk pages, I know, but see https://en.wikipedia.org/wiki/Talk:Autism#c-%C3%93.Dubhuir.of.Vulcan-20241214231300-FactOrOpinion-20241214213500), these are not scientific guidelines but are heavily informed by practical considerations. I literally quoted one of the people involved saying, "This is not science."

I could make similar statements about broader not-solely-diagnosis guidelines, like NICE guidelines that you cite - as noted on their website (https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-guidelines/how-we-develop-nice-guidelines), the NICE guidelines have extensive community stakeholder involvement processes. This is great, but surely it does mean that your decision to frame them as some kind of objective science process with no advocacy or political aspects is unjustified. Also, by the way, there's a second NICE autism guideline that is much less medicalizing than the one you cite (https://www.nice.org.uk/guidance/cg142). So your continued sole reliance here on 10 clinical guidelines and a 20 year old ADHD consensus statement, when I've noted the political processes that affect these, is somewhat troubling.

And it's not like that second more neuro-affirming NICE guideline is the only clinical guideline to take this more neuro-affirming stance: for example I could also point to this Australian guideline https://www.autismcrc.com.au/best-practice/sites/default/files/resources/Assessment_and_Diagnosis_Guideline.pdf, which only uses disorder type language when quoting DSM, and which discusses neuro-affirming practice etc. Or this guideline from Scotland's National Autism Implementation Team https://www.thirdspace.scot/wp-content/uploads/2024/03/NAIT-Neuro-Affirming-Reports-Guide.pdf. So if we're going to focus only on clinical guidelines and prioritize them above all other forms of evidence for some reason despite the political and practical considerations affecting them, then I don't exactly the clear consensus you are claiming even there.

You also claim that Bottini et al. is a primary source, but it is a systematic review of 2000+ peer reviewed articles. It's not these authors providing their opinions as part of a larger politically relevant process like clinical guidelines you cite, but them analyzing the language use of 2000+ other author groups scientifically and with inter-rater reliability. Why should we so lightly dismiss a scientific review of 2000+ articles? I mean, full disclosure I have worked with some of the authors, but I've also worked with people involved in the Bartov et al commentary you cite above, the DSM autism group, the Australian guideline, etc. If you don't like what Bottini et al. found, isn't the burden of proof on you to provide a source that engages in a comparable analysis of the field according to scientific procedures? A group of 10 clinical guidelines that I've already shown to be non-scientific doesn't seem to cut it. Especially when I can cite alternative clinical guidelines saying different things.

Ultimately, you've set yourself pretty difficult task here because you are arguing that there is an unambiguous consensus in favour of your view. All that seemingly everybody else in this discussion is doing is saying that there are credible alternatives to your position that are taken seriously in autism research peer-reviewed literature and other serious sources. You've noted below that you are tired and want the discussion to end - fair enough, so do I! But despite all the overwhelming evidence you've been presented with showing the existence of credible points of view different from your own, you continue to deny that such points of view are anything more than marginal. As noted I'm new to wikipedia, but it seems we've reached an impasse. So do we need to escalate this to some kind of resolution process or something? Ó.Dubhuir.of.Vulcan (talk) 23:43, 15 December 2024 (UTC)

I cited a scientific consensus statement, and consensus guidelines, on autism. As other editors have clarified here, these represent the highest quality evidence we can obtain. Moreover, some sources such as the ICD-11 are developed by a unification of scientists around the world. The global scientific consensus simply speaks for itself and cannot be ignored. Due to a sort of selection bias - I'm afraid that you did not comment on such evidence in your comments, despite subsequently requesting a consensus statement for evidence.

I'm glad there is acknowledgment that the aforementioned evidence goes beyond mere clinical guidelines, but this not been sufficiently accounted for. In my reply, I cited a comment quoting my sources to show how they encompass a variety of subfields within ASD, so they are not solely representative of a medical or clinical consensus. Additionally, most sources barely commented on medicine, with some based on entirely separate subfields only, and others diagnostically based such as the ICD-11 and DSM-5, thereby indicating a general scientific consensus.

The NICE guideline which you claim contradicts the perspective undertaken by the other NICE guideline, does not appear to do this. It explicitly concludes, that:

"This guideline covers diagnosing and managing suspected or confirmed autism spectrum disorder"

Just to be clear, we are not against the use of alternative terminology such as "condition", but the NICE guideline certainly does not contradict the validity of the term disorder either and in fact recognises its validity; this is also applicable to the other guidelines you cited. That specific NICE guideline cannot be used to support the notion that framing autism according to the neurodiversity perspective is more appropriate, as both sets of descriptors are used interchangeably by NICE, if we just consider these two guidelines.

Furthermore, in my interpretation of this conversation, you have not really weighed in the extensive list of citations relative to the couple you provided. The sources I gave are not comparable to "advocacy sources", as you claimed elsewhere to diminish their importance. They are not advocating for an alteration of terms in the future. They are establishing and defining autism scientifically. The advocacy papers cited - when they are peer-reviewed - also often use terms such as "consider" in the context of altering terms, and are thus not necessarily even advocating for such changes themselves but are encouraging the field takes a consideration on the matter. Advocation or not, the perspective has been refuted by other papers (1) and would not overturn the plethora of evidence indicating otherwise.

You appear to be misunderstanding the contextual differences between primary and secondary sources. Bottini et al. used an apparently randomised and systematic process to pool sources which had completely unrelated underlying research questions. None of the sources it pooled investigated the appropriateness of terminology. It is therefore a primary source regarding the issue it concerns, even though it pooled data.

To give an analogy, a secondary source may be a meta-analysis questioning the effect size of drug X, combining studies also investigating the effect size of drug X for their consistency, reliability and suitability of methods. If the study combined sources investigating drug Y in order to reach conclusions about Drug X, the source is not a secondary authoritative source with regards to Drug X despite pooling data.

Please keep in mind that various other editors and commenters recognise the scientific consensus being pointed out. "Everyone" is definitely not stating otherwise. Димитрий Улянов Иванов (talk) 21:55, 17 December 2024 (UTC)

Wait, but your sources ARE clinical guidelines? I said they weren't only diagnostic, not that they aren't clinical? Do you have another list of sources that aren't clinical guidelines? I picked out two examples to illustrate how clinical guidelines are affected by political and advocacy considerations, but I looked at all 11 on your list, and as I said I saw 10 clinical guidelines about autism, and one old statement of what the consensus about ADHD was some time ago.

Also, whether one frames Bottini et al. as primary or secondary seems to depend on how much one focuses on the authors' analysis versus the fact that analysis is based on 2000+ peer reviewed articles rather than their own original data. I don't think one can lightly dismiss 2000+ articles.

The NICE guideline I mentioned uses the terminology "condition," "autistic people," etc. It does have "disorder" in its title, but actually comments this was revised for consistency with other NICE guidelines, and the guideline group does explicitly recognize the legitimacy of other terms. So at best, I think one could classify it as evidence of the field being unsettled, not as you do of consensus support for a disorder framing.

And in various comments on this extensive discussion Oolong or somebody mentioned a textbook and various commentaries and things, so it's not like Bottini et al. and the clinical guidelines I pointed out with pro-neurodiversity framings are the only non-blog sources being cited here. A variety of reliable sources have been cited. Ó.Dubhuir.of.Vulcan (talk) 20:13, 20 December 2024 (UTC)

Right - Bottini et al looks a lot like secondary literature to me, by Wikipedia definitions. The textbook - by leading experts in the field - is of course considered tertiary literature, as are the NICE guidelines, putting them in the most preferred class of source as per Wikipedia:Identifying reliable sources (medicine). Oolong (talk) 10:42, 21 December 2024 (UTC)

Димитрий Улянов Иванов, Ó.Dubhuir.of.Vulcan, if you're not familiar with it, you might find the Outdent template useful. FactOrOpinion (talk) 23:13, 17 December 2024 (UTC)

Also, diversity implies just that; diversity. You can have a diversity of problems, that is not a positive thing. People's ignorance should never dictate a matter. It is because of people's ignorance that I have suffered abuse. Many are often abused and tormented into masking; such as myself. In spite of what I know my passed to be, I would still more likely to be misdiagnosed with an easier to manage mental condition that I do not have, than I would to be diagnosed autistic. Can you imagine how that severely and negatively impacts my life? Ignorance will eventually only impact a thing severely and negatively! HarmonyA8 (talk) 04:59, 11 November 2024 (UTC)

AGREED. It is not a disorder! (Coming from a autistic person) 206.57.152.111 (talk) 14:58, 6 November 2024 (UTC)

As an autistic person who knows what words mean, by very definition it is a disorder. Disorder - a deviation from the normal system or order, an upset of health; ailment, an irregularity, a disturbance in physical or mental health or function, an abnormal condition that affects the body's function, and can be physical or mental... HarmonyA8 (talk) 05:04, 11 November 2024 (UTC)

Which part of that definition do you think it fits, specifically? Oolong (talk) 11:15, 12 November 2024 (UTC)

Thank you RIT RAJARSHI (talk) 11:23, 13 December 2024 (UTC)

being autistic can be hard, but I wouldn't give it up if I could, does that sound like something someone disabled would say? Autistic scorpio (talk) 15:47, 12 December 2024 (UTC)

Well... Yes, actually! Disabilities are not automatically bad: they just mean that you live in a society that doesn't accommodate your needs effectively by default.

A disorder, on the other hand, clearly suggests there is something wrong with the individual - usually a disease of some sort. Oolong (talk) 11:47, 13 December 2024 (UTC)

There are significant differences between a biological impairment and a disability; although there are overlaps. Dwarfism, can be for example, described as a disability since the public transport, school blackboard, doorknobs, everythings are designed for "standard height", not primarily because the person is short in height. RIT RAJARSHI (talk) 11:50, 13 December 2024 (UTC)

@Oolong Another way, a visual impairment is a biological thing, but how a person with a Visual impairment can't access a library or can't navigate through roads due to bad designs, these are societal issues. Autism is a communication difference and it takes 2 person at least to make a communication. so why held only one party (the marginalised) as unable to communicate, only for comfort of the The other one (typical one)? RIT RAJARSHI (talk) 11:54, 13 December 2024 (UTC)

@Oolong Different period of time, different medical bodies tried to gatekeep what is Autism and what is not, where suffering or impairment appear repeatedly, and still, Autism continue to exist as an spectrum. Autism (Autos=self), an information processing difference, is what it is. It is not any of its cooccurring conditions. RIT RAJARSHI (talk) 11:59, 13 December 2024 (UTC)

@Oolong Autism doesn't kill an individual, and oftentimes make the individual more in-depth thinker and unusual strengths (although I agree that personal worth shouldn't depend on ability or inability). Autistic people are often kind, justice-sensitive, truthful, valuing friendships, and having high emotional or affective empathy. RIT RAJARSHI (talk) 12:05, 13 December 2024 (UTC)

I also agree Autistic scorpio (talk) 15:42, 12 December 2024 (UTC)

Neurodevelopmental disorders have been defined extensively in the scientific literature, the current understanding of which goes back to research (Wakefield, 1990s) and an International Consensus Statement in the early 2000s (Barkley et al., 2002).

First, there must be scientifically established evidence that those exhibiting the condition have a significant deviation or deficit in a psychological trait or ability universal to humans. That is, all humans normally would be expected, regardless of culture, to have developed that mental ability.

And there must be equally incontrovertible scientific evidence that the extent of this deficiency or deviation leads to harm to the individual. Harm is established through evidence of increased mortality, morbidity, or impairment in the major life activities required of one’s developmental stage in life. Major life ctivities are those domains of functioning such as education, social relationships, family functioning, independence and self-sufficiency, and occupational functioning that all humans of that developmental level are expected to perform.

As the scientific consensus attests, there is no question that ASD involves significant deficits and deviations in a set of psychological abilities and that these deficiencies often pose serious harm to those affected. Current evidence indicates that deficits in social reciprocation and the presence of perseverative, restricted and inflexible patterns of behaviour are central to this disorder - facts demonstrated through hundreds of scientific studies. And there is no doubt ASD leads to distress and impairment pervasively in major life activities such as independence, self-sufficiency, self-care, social relations, education, peer functioning, family functioning, and adherence to obligations and one's goals. Evidence also indicates that people with autism are significantly more prone to early mortality and morbidity (such as physical injury and accidental poisonings). This is why no professional scientific, medical, or psychological group doubts the validity of ASD as a legitimate disorder. Димитрий Улянов Иванов (talk) 19:22, 29 November 2024 (UTC)

I would like to point out that I believe you're arguing about different things. I don't think there is a disagreement that autistic people are in specific ways different from "typical" people. If that wasn't the case, autism would not exist, and if it wouldn't be negatively impacting people in some ways, we would not be concerned with it.

This can be described through medical terminology (as you, Димитрий, just did) but this language can be perceived as negative or even derogatory by those not familiar with it (understandably so, in my personal opinion). Words like "disorder", "functioning", and "deficiency" have a different meaning in colloquial language, which even affects those of us who are familiar with the definitions of these terms.--TempusTacet (talk) 20:14, 29 November 2024 (UTC)

well said TempusTacet I would also like to add that seeing those kinds of words, it doesn't feel good Autistic scorpio (talk) 15:53, 12 December 2024 (UTC)

Well said @TempusTacet , Autism exists, and lot of negative life experiences also exist, but Autism itself is not the cause of the suffering. The communication modality or other social features are different between Autistics and non-Autistics, that causes the main traumatic experience. RIT RAJARSHI (talk) 12:13, 13 December 2024 (UTC)

Thank you for checking on this issue, I'll try and keep outdenting in mind so we avoid commenting to the margin. Димитрий Улянов Иванов (talk) 23:43, 17 December 2024 (UTC)

If any use of the alternative term is made, use co-occurring so it can be parsed as actual English by more people; cooccurring looks like gibberish, even if it can occasionally be found in some source material written without any sense of practical human language parsing. PS: It has cc and rr; "ocuring" isn't a word (in English, anyway). And we do not capitalize condition names (psychological or otherise) except where they contain a proper name as in "Asperger['s]"; so it would not be "Co-occurring Conditions" as suggested by the mangled "Coocuring Conditions" in the heading above, but "co-occurring conditions".  — SMcCandlish ☏ ¢ 😼  03:56, 23 December 2024 (UTC)

Opening

I am writing because I fear that the opening to the article is difficult for the layperson to understand. Forgive me if there is something I have missed, but to me, "symptoms of deficient reciprocal social communication" sounds verbose and overly complicated. I feel that the previous "difficulties in social interaction and communication" is superior to this wording. I would edit this myself, but I would like to seek a consensus first. Please share your thoughts below if you have the inclination. FriendlyNeighborhoodAspie (talk) 12:37, 15 October 2024 (UTC)

I disagree. Terminology should not be dumbed down per se merely so the lay person can understand it as this is is the main English page, and not Simple English, which is available for this reason on Wikipedia. The definition given conforms to the ICD-11, World Health Organization, DSM-5 cited in the article and the other one you have given here is more ambiguous and less accurate. But thank you for checking on this issue and hopefully a consensus can be formed. Димитрий Улянов Иванов (talk) 16:28, 15 October 2024 (UTC)

According to Wikipedia's guidelines, the lead should be written in simpler language than the rest of the article. If that means that you have to "dumb down" a couple of sentences, then that's okay. You can keep the medicalese if you want; the guidelines only say not to put it at the top of the article (or as the first few sentences in a long section). See WP:MTAA for a good explanation. WhatamIdoing (talk) 01:40, 2 November 2024 (UTC)

Thanks for clarifying that. I think that’s fine as long as the underlying concepts are kept and consistent with the global scientific consensus (I.e., WHO, ICD-11, DSM-5, NICE, APA guidelines) so important information is not redacted. Basically, rather than shortening the first lede sentence, it can just be reworded differently. Димитрий Улянов Иванов (talk) 17:09, 3 November 2024 (UTC)

Yes, it's very badly written. Oolong (talk) 15:35, 3 November 2024 (UTC)

Do you have any suggestions as to how to improve the wording? FriendlyNeighborhoodAspie (talk) 16:59, 3 November 2024 (UTC)

how about very strong imagination that makes talking to "normal people" challenging? i'm autistic and my language skills are far beyond the people i meet everyday, which in itself causes problems. in my opinion all autism is is just a very strong imagination, unusually strong, so strong that people think it's an illness.

problems with small talk, chit chatting, "being normal" 82.168.236.78 (talk) 07:03, 11 November 2024 (UTC)

That's a very interesting take, but it isn't medical. It therefore can't be in the opening of the article. FriendlyNeighborhoodAspie (talk) 12:26, 11 November 2024 (UTC)

It’s not ‘badly written’. It’s precisely how ASD is defined by the World Health Organisation (WHO), ICD-11, DSM-5, NICE guidelines etc. Димитрий Улянов Иванов (talk) 17:07, 3 November 2024 (UTC)

I'm now very satisfied with the wording. If nobody has any problems with it, I suggest we keep this wording until further notice. FriendlyNeighborhoodAspie (talk) 18:36, 3 November 2024 (UTC)

It definitely was badly written, I'm afraid. Sorry to be blunt. The phrasing was different from any of those sources, as far as I can see? I'm not sure which specific sources you had in mind?

Wikipedia is an encyclopaedia for a general audience, and leads in particular need to be written with that in mind. Oolong (talk) 18:38, 6 November 2024 (UTC)

I think the editor had the ICD in mind. Perhaps it wasn't written verbatim, but I can see significant sampling from the ICD text. FriendlyNeighborhoodAspie (talk) 22:06, 6 November 2024 (UTC)

Hi, I just want to bring to attention that we have a Simple English Wikipedia for this purpose. The page can be found at simple:Autism. Lordseriouspig 10:06, 18 November 2024 (UTC)

Counterpoint: we have lead sections for this purpose.

"It gives the basics in a nutshell and cultivates interest in reading on—though not by teasing the reader or hinting at what follows. It should be written in a clear, accessible style with a neutral point of view."

Note also that the lead section of this article is much longer than it should be. Oolong (talk) 18:53, 28 November 2024 (UTC)

Being born with Asperger Syndrome and editing this article

Dear wikipedia community,

My name's Noam, 32 from Israel. I was born with Autism. Back in my childhood, they used the name Asperger Syndrome, which is still a name used today, but officially the name was changed to a mild type of autism, or high functioning. Its very important to me to be able to help edit this article and improve it. Being born with Autism, has made me a weird, different, special, emotional, and very disciplined person. Can you explain if the article is 100% complete or requires further ediiting? if so what needs to be edited? Noam Atadgy (talk) 23:50, 28 October 2024 (UTC)

Hi Noam, welcome to (English) Wikipedia! I don't know that anyone's going to be likely to respond to you telling you what they feel needs to be edited. I'd suggest being bold, and reviewing the article for yourself and making any changes that you feel will improve the article. That said, I'd also recommend being careful, making small numbers of relatively incremental edits (say, five at a time at most), and leaving edit summaries so other editors know what your intentions are. If you're adding information, you absolutely should provide reliable sources in the form of citations. It's reasonably likely that with an article of this nature your edits may be reverted; if and when that happens, please don't take it personally, but rather consider it a teachable moment, and above all, if that happens, please don't simply reinstate your edit(s), but rather initiate a discussion here or with the reverting editor, as suggested at WP:BRD. That way, other editors can review the situation as well and provide their counsel. I'm happy to try to answer any general questions you may have. Happy editing! DonIago (talk) 12:42, 29 October 2024 (UTC)

My brain works a bit differently. It affects how I see the world, how I communicate, and how I interact with people. It’s just a part of who I am, not something that needs to be fixed. It comes with its own strengths and challenges, but it's always been a part of my life. In essence, that is, I have autism as well. 206.57.152.111 (talk) 14:56, 6 November 2024 (UTC)

Hi Noam, there's a lot missing from the article, but there's also a lot that's included, but shouldn't be! This article is way too long, and quite a lot of it is not well-sourced.

I think it's safe to say that many Wikipedians are autistic, although not all have realised it yet - there is much about the site that is attractive to many of us... Oolong (talk) 18:57, 28 November 2024 (UTC)

Autism, Wikipedia and epistemic injustice

Over the last few years I've occasionally tried to improve Wikipedia's autism coverage, working to bring it up to date with modern understandings and so on. For example, in 2022 I put in a lot of work to ensure the 'Autism' entry was merged with 'Autism Spectrum' (rather than the entry under that title focusing mainly on 'classic' or 'Kanner' autism). I also started work on a substantial rewrite of the page with a couple of other editors, but I think we all got kind of burned out on arguing with people every step of the way.

Obviously this page - in common with other autism-related pages - has been a bit of a battle-ground at times. No surprise there, when you look at how controversial practically everything about autism is in the wider world! Still, I think the result is a page (a set of pages, actually) that badly needs bringing up to date, and where all attempts to do so tend to be exhausting, especially for any newcomers. Effectively, some of the material here is so out of date and/or one-sided as to constitute misinformation, while we completely miss out some absolutely key things about autistic experience that anyone living, working with or being an autistic person really ought to know about.

In the hopes of helping people to understand these issues and how they come about, I ended up writing a long article for Thinking Person's Guide to Autism about 'How Wikipedia Systematically Misleads People About Autism' (edited 2024-11-25 to reflect published title and URL). This may also help motivate some more people to work on bringing Wikipedia up to date on all this.

I'm posting this here because I thought existing Wikipedians should know about it: it could potentially be considered 'canvasing'; and I figured that anyone looking at this Talk page might find it an interesting read, which could help inform how they think about this and related articles. There are also some questions in there which I'd be interested in other editors' answers to. It's packed with references to further reading - I tried to ensure that anything vaguely contentious (or little-known) was backed up with high-quality citations.

I'm happy to answer any questions here, or by email. Thanks!

Oolong (talk) 17:16, 2 November 2024 (UTC)

To keep Wikipedians updated: the essay has now been published as How Wikipedia Systematically Misleads People About Autism; for those who prefer Wiki-style formatting and referencing, it's also here as User:Oolong/injustice.

I've also put a short video up on TikTok and Instagram, hoping to engage more people to help fix some of the substantial, outstanding issues with this and related entries. Oolong (talk) 17:41, 25 November 2024 (UTC)

@Oolong: The current version of the article is obsessed with medical model, focusing on the genes or neuroscience, with a very little (probably zero) understanding of lived experience of Autistic people and Autistic communities. To be honest, Autism is more of a "situation" due to contemporary human social or civilization structure where the cognitive minorities get misunderstood and drastically misfit. In order to understand Autism, we need to see it through Anthropology, and the human evolution , how herd behavior had selective advantage but that is not the only way of being. not through some sort of pathology or epidemiology. Definitely Autism has objective cause like genotype or epigenetics, but that does not mean the "problem" lies there. The problem lies in broader social dynamics which is totally unaddressed in this article. RIT RAJARSHI (talk) 05:25, 12 December 2024 (UTC)

Yes. I've not seen any justification for the current focus of the article. It should be written with some regard for who is likely to be looking autism up, and what it might be useful for them to know. Oolong (talk) 11:43, 13 December 2024 (UTC)

I don’t see the point in playing Neville Chamberlain over the image.

From I’ve gathered, some people on here started clutching pearls over a picture of a child stacking cans that’s been up for years, because apparently the lifelong disorder with noticeable signs commonly beginning in childhood (one of which is the said stacking of cans) shouldn’t have an photo that reflects that. But even if you wanted to do your science by council, you need only look up the keywords “Wikipedia,” “kid,” and, “autism” in literally any order whatsoever and I’d be very impressed if you didn’t realize that the amount of people who prefer or feel represented by the image (including the parents of the actual child) vastly outnumbers those that for whatever reason do not. I feel ridiculous for even having to type some of this. Apparently, other photos throughout the article have also been deleted purely because, from what I can tell, one or two people didn’t like the subjects in them. If you’re going to start stripping articles whenever a few people begin to complain and wait until “a clear consensus has been reached” over everything, you’ll wind up with the most barebones site, especially if it’s over something as innocuous as this. Zeltzamer (talk) 02:59, 13 November 2024 (UTC)

I am somewhat tempted to open a WP:RFC regarding this as I've seen it be debated so many times on here but I'm not sure if that is the best path moving forward. IntentionallyDense ^(Contribs) 03:38, 13 November 2024 (UTC)

If you cannot see that representing a lifelong condition through an image depicting a non-universal behaviour enacted by a toddler is fundamentally inappropriate, then nothing anyone says will have any effect on your thought processes. I am a diagnosed autist, I never stacked cans or lined up toys. Despite having long bouts of selective mutism at infant school and other problems, my autism was not picked up in childhood. I was diagnosed in late adulthood. The photo has zero relevance to me and to many other autistic people. Urselius (talk) 08:55, 15 November 2024 (UTC)

I agree with @Urselius. That image is trivialising and portrays the disorder in a very superficial way. The inclusion of an image is not necessary nor a matter of urgency so its much more preferable to have no image at all unless one can be proposed that at least attempts to offer some comprehensive or underlying depiction of ASD, as we see in the ADHD article for instance. Understand that to find an acceptable image is problematic not because of some baseless disagreement happening in the talk pages here, but the complexity of the topic and the absence of a unified construct that can be depicted in an image are the main constraints. Димитрий Улянов Иванов (talk) 14:54, 17 November 2024 (UTC)

By this logic, any image on any article attempting to use any evocative visual shorthand to convey behaviors commonly associated with a select disorder is inappropriate and should be deleted. Not everyone with depression clutches their head while sitting in a chair and not everyone with anxiety feels an infinite scream passing through nature over a Norwegian fjord. Nor does everyone with a disorder/disease lie sick in bed with a book (some edit Wikipedia.) Sorry, Van Gogh, Munch, and Ancher. You did some good work but the talk page round table has declared you non-universal. Zeltzamer (talk) 07:30, 30 November 2024 (UTC)

@Zeltzamer I don't care that autism mums (mums of autistic children) might like the image, it makes people think autism is for babys or a kid condition, it makes the "but you don't look autistic" type conversations from non-autistic people, its stereotypical as of course its a boy (everyone knows autistic girls don't exist). No image is fine. Anthony2106 (talk) 06:51, 29 November 2024 (UTC)

Question: who thinks this? So far the only people I’ve seen either like the image or are worried that it’ll make others think that autism only exists in babies or something. None of these hypothetical “people who saw picture of kid stacking cans and based their entire view of autism around that” have actually been proven to exist. Any of these alleged people who see that picture and think those things would’ve thought them without it; removing it isn’t going to give them any more of an incentive to educate themselves. And you shouldn’t worry about curtailing a page because someone may or may not base their entire medical opinion around the first innocuous image they see. That person would already be dead from forgetting how to breathe. Zeltzamer (talk) 05:06, 30 November 2024 (UTC)

Any image representing an abstract psychiatric condition will be "superficial" in the sense that they obviously can't express every aspect of it. That doesn't mean the image is bad or unhelpful, it just showed a quirk that many autistic people in fact display, and I think that's totally fine, even if you can't relate to it yourself. I understand you're afraid of it contributing to the whole autism infantilization thing, but I doubt any neurotypicals form the "autism is a male children thing" idea from a Wikipedia infobox image, and honestly I don't think you're representing the general worries of our community here, as most other autistic people, from what I've gathered, seemed very fond of that image, myself included of course. I don't think this should be such a big deal, but the image removal was certainly a downgrade on this page and I think it should already be reverted by now. Terakero (talk) 22:05, 18 December 2024 (UTC)

so now every image has to be perfectly representative? Nobody comes onto a page, takes 1 look at the image and moves on. The content of the article is for properly informing the reader. And you're being obtuse, the sex/gender of the baby in the picture is totally ambiguous LachlanTheUmUlGiTurtle (talk) 16:23, 19 December 2024 (UTC)

Signs and symptoms --> Common characteristics

The section is now called "Signs and symptoms" but I liked the old name. I don't care if "symptoms" is common in books if some autistic people don't like it we should try to avoid it, the old name worked fine.

Can people other then Димитрий Улянов Иванов respond? Anthony2106 (talk) 09:44, 19 November 2024 (UTC)

Apologies but I must reply to this. First, to preface, to say you “lied” in the edit summary about why you restored the edit may qualify as vandalism. I won’t personally revert it now, but please be mindful of doing such things.

Wikipedia Guidelines state “It is important to note that in forming its consensus it is the members of a particular scientific discipline who determine what is scientific and what is questionable science or pseudoscience. Public opinion or promoters of what is considered pseudoscience by the scientific consensus hold no sway in that determination." (Wikipedia:Scientific consensus).

A global scientific consensus has been demonstrated on the page section entitled “Should autism continue to be described as a neurodevelopmental disorder characterised by symptoms, impairment and severity?”. The term symptoms and impairments are used primarily in national and international guidelines, consensus statements, standardised diagnostic criteria, systematic reviews and other secondary scientific sources but signs are as well so including both gives due weight.

Thus, the classification must be kept to comply WK guidelines. I will keep making and adhering to these points unless the references are adequately addressed. Димитрий Улянов Иванов (talk) 17:39, 19 November 2024 (UTC)

Yes, there is a strong case to made that 'symptoms' is inaccurate and inappropriate here, and it's not at all clear what advantages it has over the alternative.

I see that the Signs and symptoms page describes them as "diagnostic indications of an illness, injury, or condition." The 'nutshell' summary of the page just says "Indications of a specific illness, including psychiatric", which obviously doesn't fit. Similarly, the Cambridge Dictionary defines "symptom" as "any feeling of illness or physical or mental change that is caused by a particular disease" - again, autism is not considered a disease by reputable sources, making the use of the term inappropriate here.

If the intention of this section is merely to summarise the diagnostic criteria (which is how I interpret the page linked above) then 'Diagnostic criteria' would be a more accurate heading. If we want a section on common characteristics, I wonder if we should also have that, given how much the existing diagnostic criteria miss out or mischaracterise!

I have raised a set of related questions over on WikiProject Medicine (explored more deeply in my recent article). It is not clear what the medical framework really adds to this article, and interpreting it rigidly seems to be actively hampering its usefulness as an encyclopaedic entry. Oolong (talk) 10:47, 26 November 2024 (UTC)

Again, it is not "inaccurate" nor "inappropriate". I'd like to cite and contextualise the evidence for this so others don't miss it. Hopefully it can be addressed in this thread against the references you have provided above, which are not related specifically to Autism. As one reads the evidence here, keep in mind my comment above about what Wikipedia guidelines mandate:

References

The ICD-11 and World Health Organization (WHO), guidelines used globally, conclude that autism is a neurodevelopmental spectrum disorder and that "The onset of the disorder occurs during the developmental period, typically in early childhood, but symptoms may not become fully manifest until later, when social demands exceed limited capacities. Deficits are sufficiently severe to cause impairment in personal, family, social, educational, occupational or other important areas of functioning". [1] . This Wikipedia article also has concluded that "ICD-11 was produced by professionals from 55 countries out of the 90 involved and is the most widely used reference worldwide".

The DSM-5 criteria, used internationally, concludes that autism is a neurodevelopmental spectrum disorder; per diagnosis that "Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning" and that "Severity is based on social communication impairments and restricted, repetitive patterns of behavior". 2

Guidelines from the UK National Institute of Health & Care Excellence (NICE) conclude that autism is a neurodevelopmental spectrum disorder. They write "The clinical picture of autism is variable because of differences in the severity of autism itself". 3 NICE guidelines also refer to "symptoms of possible autism..." 4

National Institute of Mental Health (NIMH) Guidelines conclude that "Autism spectrum disorder (ASD) is a neurological and developmental disorder" and acknowledge the existence of "signs and symptoms of ASD". 5 Paradoxically, a different NIMH publication advocates against some of the above [6].

The European Society for Child and Adolescent Psychiatry (ESCAP) and Autism Europe (AE) guidelines, used internationally, conclude that "autism spectrum disorder (ASD), which is now recognised not only as a childhood disorder but as a heterogeneous, neurodevelopmental condition that persists throughout life". They also state that "Earlier recognition of autism symptoms could also be improved...". 7

German AWMF guidelines conclude that autism is a neurodevelopmental disorder characterised by symptoms, impairments and varying severity levels in accordance with the above guidelines. 8

National Guidelines in France conclude that autism is a neurodevelopmental disorder, with varying severity levels, characterised by symptoms and the presence of significant impairment, endorsing the DSM-5 and ICD-11(9).

A scientific consensus statement on the evaluation of ASD conclude that it's a neurodevelopmental disorder, with varying severity levels and is characterised by symptoms and the presence of impairments (National Consultation Meeting for Developing IAP Guidelines on Neuro Developmental Disorders under the aegis of IAP Childhood Disability Group and the Committee on Child Development and Neurodevelopmental Disorders et al., 2018)).

Consensus Guidelines on ASD concluded that "Autism spectrum disorder (ASD) is a neurodevelopmental disorder with an estimated lifetime prevalence of at least 1% (Baird et al., 2006; Brugha et al., 2011). Core symptoms include..." (Howes et al., 2018).

Canada's national diagnostic guidelines from the Canadian Paediatric Society (CPS) conclude autism is a neurodevelopmental disorder; that "[children with ASD] can present with a wide range and severity of symptoms"; that "This statement proposes three ASD diagnostic approaches, the choice of which depends upon the paediatric care provider’s clinical experience and judgment, and the complexity of symptom presentation" (CPS, updated: 2024).

The International Consensus Statement on ADHD, authored by 80 scientists, coendorsed by 403 experts and numerous associations, across 27 countries and 6 continents (Faraone et al., 2022) conclude that ADHD [another neurodevelopmental disorder] "the clinical significance of the signs and symptoms of the disorder has been recognized for over two centuries". This shows the term symptoms and signs are both applicable to neurodevelopmental disorders. Systematic reviews and meta-analyses use these terms for Autism as well, not just that specific neurodevelopmental disorder (Dietert et al., 2010; Mojgan et al., 2017; Belmonte et al., 2022).

It appears that some blog posts, advocacy papers and a textbook advocate for a change in terms deviating from calling ASD a neurodevelopmental disorder but simply a neurodiversity wit mere "traits" rather than symptoms and impairments.10,11,12. Note that these are advocating for something that is not currently established. Thus, they are not sources that can overturn the global scientific consensus that autism is a neurodevelopmental disorder as it's currently defined. Notably, other textbooks do not share such views (e.g., Volkmar, 2021). As cited in this WP article, other peer-reviewed reviews disagree with these advocations (Neison et al., 2021; Shields et al., 2021). Note that blog posts are not peer-reviewed, scientific papers and thus are not reputable in comparison to this literature. This Wikipedia article at the time of writing does a well-balanced view of the ongoing debate about whether an alteration in terms should take place in the future. Димитрий Улянов Иванов (talk) 13:12, 26 November 2024 (UTC)

You don't seem to be making any reference to the definition of symptom here.

Yes, many people use the word 'symptom' with respect to autism.

No, that doesn't demonstrate that it is accurate or appropriate. To do that, you have to look at the meaning of the word. Oolong (talk) 18:40, 28 November 2024 (UTC)

International guidelines, consensus statements, diagnostic criteria on autism that are standardised around the world, which define it as characterised by symptoms, are not "people using" the term.

Dictionary definitions, which attempt to generalise and are unrelated to autism, do not overturn the global scientific consensus. The scientific understanding of autism is what informs its definition—not a generalized dictionary entry that has nothing to do to with autism. The plethora of citations provided substantiate this, yet you have failed to acknowledge their existence and are instead dismissing them by inaccurately equating them to individual opinions.

Wikipedia's guidelines (as noted above) explicitly state that such references must guide the phrasing of articles, not public opinion or unrelated, nonspecialised references. Димитрий Улянов Иванов (talk) 18:59, 28 November 2024 (UTC)

It looks like what you're citing there is an essay. If you look at the box at the top, you'll see that it states: "It contains the advice or opinions of one or more Wikipedia contributors. This page is not an encyclopedia article, nor is it one of Wikipedia's policies or guidelines".

Perhaps Wikipedia has actual guidelines that are relevant here, but this is not one of them.

In any case, the term 'scientific consensus' is generally used regarding matters of fact, not terminology. These are very different sorts of thing!

The factual question we'd want to put to scientists to resolve this would be about whether or not autism, and its characteristics, fit agreed definitions of these terms. To which end, we'd want to know what those definitions are. Hence reaching for a dictionary. Feel free to suggest alternative definitions; these are obviously not the only ones in use... Oolong (talk) 19:21, 28 November 2024 (UTC)

Here is what was actually concluded in Wikpedia:Scientific Consensus (see what I marked in bold):

"When writing about ideas around which scientific consensus has coalesced, Wikipedia editors should strive to describe those ideas as plainly as possible. It is important to note that in forming its consensus it is the members of a particular scientific discipline who determine what is scientific and what is questionable science or pseudoscience. Public opinion or promoters of what is considered pseudoscience by the scientific consensus hold no sway in that determination. (See Wikipedia policy and guidelines regarding Undue weight, extraordinary claims sourcing, verifiability, reliability, and dealing with fringe theories)." (Wikipedia: Scientific Consensus).

So while you are correct that the citation is an essay itself (thanks for pointing out my error there), it does link to the corresponding Wikipedia policies and guidelines to substantiate that. On the contrary, I think what you are doing here is failing to acknowledge the existence of the plethora of references, and misrepresenting guidelines and standardised diagnostic criteria as "people's use" of a term. Instead, you can address the references showing the scientific understanding of autism informing its definition—not some dictionary's generalised entry that has nothing to do with it. Димитрий Улянов Иванов (talk) 19:36, 28 November 2024 (UTC)

While I think terminology is important & words shape our thinking, I don't believe this discussion is helpful if the goal is to get to a more informative & balanced Wikipedia entry.

It seems self-evident to me that when one refers to the established medical/psychiatric literature, one is going to find a definition of autism as a "neurodevelopmental disorder characterized by persistent deficits in social communication/interaction and restricted, repetitive patterns of behavior". This is undoubtedly the consensus in that field, and within it terms like "symptom" and "disorder" with their specific meanings make a lot of sense.

But this terminology is perceived differently outside of the field, and as Oolong has pointed out here and elsewhere there is a movement towards terms that are perceived as less deficit-oriented within the medical field as well as in other fields concerned with autism (eg education, psychotherapy, public health).

Rather than arguing about which terminology is "correct" I'd rather we discuss whether the Wikipedia entry "Autism" should take a strictly medical/psychiatric point of view or, if not, how it could balance different perspectives. Different points of view require different vocabulary to do so accurately and simply replacing eg the word "symptom" with "characteristic" does not improve the entry in my opinion. A "diagnosis" requires "symptoms" but describing the experiences and needs of autistic people using medical vocabulary is awkward. Sometimes, there's a shared terminology (eg autistic masking) but usually it's best to follow what's most commonly used (eg RRBs and stimming).--TempusTacet (talk) 23:44, 28 November 2024 (UTC)

@TempusTacet Daim yeah we should do both -- Include some technical words from the books and words autistic people actually want. Anthony2106 (talk) 23:50, 28 November 2024 (UTC)

I did not mean to suggest simply "mixing up" the vocabulary. My point is that neither Димитрий nor Oolong are wrong and my proposed solution is to be acknowledge that there is not one true perspective on autism, each of which comes with their own terminology. It can be meaningful to describe autism as a difference in cognition & perception (eg in an educational or therapeutic setting) in the same way it's functional to talk about symptoms, their severity, and their management in a medical setting. This has little to do with what "people actually want" but more with what's established & productive. (I'm not implying that it's not important to interrogate the effects & perception of terminology and make changes, as we do.)--TempusTacet (talk) 08:35, 29 November 2024 (UTC)

Yes, I broadly agree with this.

It is important to note, though, that while it's true that there is a partial consensus within the medical/psychiatric establishment around medicalised views of autism, even very mainstream, explicitly medical sources like the Cleveland Clinic ("Autism symptoms — more accurately called characteristics — are specific behaviors that healthcare providers look for") and the NHS (which completely omits the term 'symptom' from its pages on 'signs of autism') often present autism in a much less medicalised, deficit-based way than the existing entry on Wikipedia.

Similarly, leading researchers strongly associated with biomedical autism research, like Simon Baron Cohen[2] (who I do not have a lot of time for, in general) and Francesca Happé & Uta Frith[3] are very publicly on record questioning the validity of framing autism as a 'disorder'.

Change has been rapid on this front in recent years, and the aggregate shift has been very much towards a more neurodiversity-based way of thinking about autism. Oolong (talk) 17:38, 1 December 2024 (UTC)

I agree with what you wrote here. I don't have the impression that Димитрий is denying that there is a change in language or would claim that medical terminology is without problems, especially when used outside of the field. From our discussion here, I've understood that his main concern is that autism could be presented in a way that contradicts current medical consensus, and that using language that's also associated with voices that are outside of this consensus (eg positions in the spirit of Indigo children) could invite their uncritical presentation. I would like to add that the same problem arises when using language that is also used by voices that are painting autism in an overly negative light eg in hopes of selling snake oil to desperate parents.

Since you mention Francesca Happé, I'd like to point to this recent public lecture of hers, where she models a communication style like I'm trying to advocate for here.--TempusTacet (talk) 18:51, 1 December 2024 (UTC)

Hi, thank you for your diplomatic comments, and for acknowledging that there is indeed a scientific consensus on the issue. That was the initial point I have repeatedly been showing here because some editors discount the references without any justification to claim a consensus to the contrary. I agree that exclusively describing autism through a scientific standpoint may not be most appropriate, and thus balancing this with public opinion should be done but really only in the relevant sections.

I hope the question can now be about reconciling the scientific consensus with public opinion, and where specific terms would best be placed.

For context, we are extremely familiar with the neurodiversity movement, and how a subset of its advocates are making a mockery of the decades of effort expended to have neurodevelopmental disorders taken seriously. A significant portion of the movement is anti-psychiatry, oriented around science-denial, and downplays or even erases the harms, experiences and subsequent distress of people as a direct result of their various cognitive impairments.

To substantially reframe the article in favour of viewpoints that contradict the scientific consensus would be problematic - even if done in a neutral way. It would result in various other kinds of science-denial beyond the rejection of autism as a valid neurodevelopmental disorder. For example, it could lead to the article promoting the myth that vaccines are a cause of autism because, after all, movements exist adhering to these narratives. This is ultimately why the Wikipedia guidelines exist stating that scientific consensus should be prioritised and relied on, so the content is accurate.

Thus far, I don't see major concerns with regards to reconciling the portrayal of ASD with public opinion. Sections exist on those matters and even the lede neutrally and accurately describes the controversy on the framing of ASD. Additionally, the article describes the disorder interchangeably with the terms signs and symptoms, as it does in the section title. Both terms are scientifically valid, but just because personal disagreement exists with the use of the latter term doesn't suggest it should be discarded, or that we should reframe autism as a mere neurodiversity.

It's important to note that to be diagnosed with autism, the diversity must reach an extreme enough point to cause significant impairment or distress to the individual. This article is specifically concerning autism - the diagnosis - and not autistic traits, so the scientific description that has been used is accurate for the context. But I can see how a different framing might be appropriate in different contexts, so you are correct to point out this nuance.

I hope this helps clarify matters. Димитрий Улянов Иванов (talk) 18:45, 29 November 2024 (UTC)

Димитрий, please don't conflate "scientific" with "medical". I know that it can seem otherwise to those of us working in the field but there are other fields & professions concerned with autism as well. This has little to do with "public opinion" or contradicting the medical viewpoint. Multiple perspectives can be valid at the same time & more often than not considering them simultaneously is productive.

I'm not advocating for the inclusion of fringe theories or minority positions promoted without substantial evidence. I'm also not advocating for taking a "neurodiversity perspective", which would be equally limiting & excluding.

I disagree that "This article is specifically concerning autism - the diagnosis" and I believe that this is what we should discuss, rather than terminology, which will follow naturally. From my point of view, this article should cover "autism - the phenomenon". This includes "autism - the diagnosis", which certainly has to take up a larger part. But a well-rounded depiction of autism includes more than the narrow lens of a diagnostician, whose focus is on what differentiates autism from other conditions. In my opinion, a Wikipedia entry on autism should also cover epidemiology, causes, and pathophysiology as well as therapies, education, and legal aspects, in addition to history, well-being, and advocacy. Each of these topics yields a different perspective (all of which are compatible with a medical perspective!) & requires its own terminology.--TempusTacet (talk) 19:53, 29 November 2024 (UTC)

Medical science is a science, and I wasn't merely referring to autism in the context of medicine. The guidelines, consensus statements, and systematic reviews I cited are interdisciplinary, covering not only its diagnosis but the causes, prevalence, associated features, implications in major life activities, therapies for etc of ASD, unanimously using the same terminology and concluding autism is a valid neurodevelopmental disorder. The aforementioned description is not exclusive to the context of medicine.

I agree the article is not just regarding the diagnosis itself. Apologies for accidentally implying that. What I meant was that the underlying topic is autism as it's diagnosed, which upholds the other areas. Causes, epidemiology and pathophysiology, treatments, legislation etc all revolve around the diagnosis and validity of ASD. Scientific studies use the same terminology in these contexts too.

In terms of advocacy, the terminology may differ depending on the group represented and that's perfectly understandable. I wouldn't be against using different terminology in such contexts if appropriate. For instance, in the lede, the controversy regarding the neurodiversity movement is mentioned. The first sentence that represents the movement uses the terminology they tend to use (e.g., neurodiversity), while the second one representing the opposing perspective uses that context's terminology (e.g., disorder, impairments). This gives due weight. However, what I'm against is reframing the article such that it no longer describes autism according to the scientific consensus in areas it applies, which are not isolated to medicine.

My main concern is how some other editors have argued the terms disorder, symptoms, impairments and severity should be completely removed from the article because it doesn't align with the opinions of some blog posts or advocacy groups. That simply doesn't overturn the scientific consensus nor should it, except in the contexts where the topic concerns these specific groups or where the consensus may be to the contrary. It seems to me that using this sort of logic as to what constitutes valid sources, anyone can argue something like "the article should say autism is caused by vaccines because blog posts and advocacy groups exist saying so! Disregard the scientific consensus!". I don't mean to suggest this is what you uphold but it has been suggested by others in the talk page. Димитрий Улянов Иванов (talk) 11:27, 30 November 2024 (UTC)

I understand your concerns and share many of them myself. I would like to broaden "what I'm against is reframing the article such that it no longer describes autism according to the scientific consensus in areas it applies, which are not isolated to medicine" and say that personally I'm opposed to reframing any description of autism & related topics through a lens that is unsuitable for the particular area. I'm not so much thinking about advocacy but the coverage of topics like autistic burnout that has come up elsewhere. There seems to be the desire to describe it as a well-defined & diagnosable condition rather than take it as a common experience of a large portion of autistic people that is researched as such. (Personally, I find it strange that on the one hand, there's a justifiable desire to view & describe autism as non-pathological unless specifically discussing it as a disorder in a strictly medical context but on the other hand there seems to be a feeling that unless something gets an entry in the DSM or at least tentative diagnostic criteria it's somehow invalid.)

I don't think there's a danger that fringe blog posts or the like would be accepted as sources. A lot of academic & professional literature (eg psychotherapy, education, parenting) describes autism without using terms like "disorder", "deficiencies", or "managing symptoms". Saying "stimming" instead of "stereotyped and repetitive motor movements" and "special/intense interests" instead of "highly restricted interests that are abnormal in intensity or focus", or saying "masking" instead of attempting to differentiate camouflaging from compensatory behaviors does not change anything about what's described. But language like this is more appropriate in many circumstances, even in psychoeducation delivered by psychiatrists. A parenting or self-help book written like the DSM is useless, as is a diagnostic manual written like a parenting book. Both can & should deliver the same correct information backed by scientific evidence but have to present it differently to fulfill their purpose. The same goes for a Wikipedia entry on autism.--TempusTacet (talk) 12:24, 30 November 2024 (UTC)

You make very good points. Personally, I'm unaware of the intricacies with autistic burnout so I can't offer a comment there. But the conflicts withwhether and to what extent reliance should be with diagnostic criteria is quite a concern, I do notice this quite a lot too in other pages. There are instances where the DSM and ICD are simply wrong. For example, both exclude emotional dysregulation as a diagnostic symptom of ADHD despite the mountains of scientific evidence indicating it should be. In general, they characterise ADHD in a very superficial way rather than as a far more complex, underlying disorder of executive functioning and self-regulation. The article on ADHD was originally very DSM focused in its descriptions and so I strived ot fix that with references to other reputable sources.

If a lot of academic and professional literature in those contenxts specifically do characterise autism differently, then certainly such characterisations should be used in the article. The secondary literature (guidelines, reviews, meta-analyses etc) primarily describes autism as has been aforementioned in many of the main topics (symptomology, impairments, treatment, accommodations, prevalence, comorbidities, etc). This may differ when it comes to other areas. Disseminating scientific findings, for example in trade books for the public is one for sure. In many cases, this is to make the information more understandable to a lay audience and thus not necessarily contradicting other descriptions. And I know plenty of clinical handbooks and books for the public that are pro-disability in their descriptions (e.g. Barkley et al, for ADHD and CDS), and for good reason.

I agree that blog posts and other non-peer reviewed sources are suitable for some contexts, like cultural and societal interpretations of topics. I think we just need to be careful to ensure they are not generalised or contravene on areas where the scientific consensus is much more relevant.

This shouldn't be based on just e.g. the diagnostic criterion; we should be citing a variety of scientific literature to gain as much of a balanced perspective as possible. These can go from guidelines to reviews and meta-analyses, editorials to reports directly from journals, diagnostic criteria to primary studies to consensus statements etc. but they all share a degree of reputability and peer-review other types of sources don't.

Anyways, thank you for the discussion and the chance to reach greater understanding of this nuance! Димитрий Улянов Иванов (talk) 14:09, 1 December 2024 (UTC)

Thanks for this. Yes, the fact that medical science is not all of science is really important to bear in mind for an article like this!

This is part of the reason I've repeatedly challenged Димитрий's insistence that what he's arguing for is simply the medical consensus; that and the fact that, as noted above and elsewhere, even among scientists specifically working within a biomedical framework, there is in fact serious disagreement about the appropriateness of framing autism as a 'disorder'.

But of course, you are right that this is largely beside the point: Wikipedia is a general-purpose encyclopaedia, written for a general audience. We should absolutely be avoiding making claims that are contradicted by a scientific consensus, but that's simply not what anyone is arguing for here! How we frame those claims is what is under dispute.

There is of course a separate, but overlapping question of which claims we should be including, and how much weighting we should be giving to each, but I don't think that's the issue at stake in this particular discussion. Oolong (talk) 17:46, 1 December 2024 (UTC)

I think the last question you raise is the important one. I'm not overly worried that there could be major disagreements about what to include in a basic Wikipedia entry on autism. Right now, there is a major disbalance because over the years some topics have been moved to their own entries, with not even a summary being left in the main entry (eg pathophysiology & history). Other sections are overly long or specific (I would be surprised if there was opposition to eg trimming down the sections on use of digital media or various flags and symbols.)

When it comes to language, I believe that each topic should be presented using its inherent terminology. This ensures clarity and that potentially harmful words are embedded in an appropriate context. (If there are established alternative terms in the relevant literature/discourse, the least problematic one should be chosen, of course.) While this will not make everyone entirely happy, it would hopefully avoid perpetual arguing about language in favor of improving the information in the entry, and it would result in a Wikipedia entry that reflects the current understanding of autism across fields & perspectives.--TempusTacet (talk) 18:21, 1 December 2024 (UTC)

Signs and symptoms is the section name used in every article about syndromes. Even the article on gender dysphoria has such section name, and it is far more controversial there. Due to the fact that Autism is a syndrome, it is appropriate to name the section “signs and symptoms” because that is what it is talking about. I understand you may not be happy with this, but maybe others would be unhappy with naming it “common characteristics” for some other cultural reasons? That would be silly, but it’s an irrelevant discussion. There is nothing wrong with the name and it is consistent with other articles. Do not change it. Slothwizard (talk) 03:00, 16 December 2024 (UTC)

I agree with Slothwizard et al that this terminology is DUE. We go by what the highest-quality sources use, and we are not going to get higher quality than consensus statements from multiple international medical organizations. More broadly, I also want to voice opposition to deemphasizing the medical aspects of ASD. It is a spectrum; the perspectives of high-functioning autistic people represent only a small fraction of those diagnosed with the disorder and should not be disproportionately prioritized. JoelleJay (talk) 19:12, 17 December 2024 (UTC)

Completely agree; the international scientific consensus is clear. Димитрий Улянов Иванов (talk) 20:38, 17 December 2024 (UTC)

No. It straight-up, very clearly is not. You've been shown countless counter-examples of scientists disagreeing on this by now.

The consensus statements you've referred to, as far as I can see, are one from the Indian Academy of Pediatrics, one from the British Association for Psychopharmacology and one from the World Federation of ADHD, which is of course not about autism. These are three clinical organisations, only one of which is international, and as far as I can see none of them make any claims about a scientific consensus. Do let us know if I'm missing anything on that front.

Sure, there is a consensus among the authors and those who have endorsed these statements. Even there, I would want to ask: did any of these consensus statements actually look critically at the question of the appropriateness of 'disorder' as a framing? I can't see anything about it in the statement from the psychopharmacologists, which is hardly surprising, because this is not actually a psychopharmacological question. I don't think the Indian Pediatricians looked at the question either, since their stated purpose was 'provide consensus guidelines on evaluation and management of ASD in children in India.'

There are many other scientists out there. There are many other relevant scientific disciplines. I assume you know this, so I am unclear on your rationale for excluding all the dissenting scientists from consideration.

A consensus among some clinicians is not the same thing as a scientific consensus.

This is not a controversial statement. Oolong (talk) 10:50, 20 December 2024 (UTC)

Brevity

Among other problems, this article is way too long and verbose. Without the references, I think it comes to more than 12,000 words. In line with Wikipedia:Summary style and Wikipedia:Content forks, we should be looking at leaving out chunks that have their own entries, perhaps including just a very short summary within the article body. We probably want to lose at least 3,000 words.

Articles being this long is a problem both for readability and maintainability - I suspect that the sheer size of the entry is a big part of the reason it's been allowed to get so out of date.

The lead has six paragraphs, and a couple of them are long enough that they should probably be split in two, with a total of about 600 words. Wikipedia:Manual of Style/Lead section states: "The leads in most featured articles contain about 250 to 400 words." In other words, we should almost certainly be looking at cutting out about a third to a half of the lead. I would suggest we follow Wikipedia:How to create and manage a good lead section and try to keep this section down to no more than four paragraphs. Oolong (talk) 17:35, 19 November 2024 (UTC)

I propose to remove the Causes section and replace it with something on these lines, following the link to the main Causes of autism entry:

Exactly what causes autism remains unknown. It appears to be primarily genetic. It is not caused by vaccines, nor by 'cold' parenting. Oolong (talk) 19:05, 28 November 2024 (UTC)

Personally, I don't see a reason so as to completely remove the causes section or condense it substantially unless it's definitively required. The complexity of ASD can necessitate a word count of this nature but I can see how some sections could be made less verbose. In other words, rather than focusing on reducing the word count, perhaps we should focus on making it less verbose so important details are not excluded.

Regarding causes, from what I can see the article reflects these points you make that are scientifically accurate. Meta-analytic data of twin studies more broadly shows that the rearing social, familial or shared environment is not a statistically significant contributor to symptoms (but rather genetics and neurobiological events). By mentioning that, I think it would cover far more of the unscientifically attributed causes without having to mention them all explicitly. Димитрий Улянов Иванов (talk) 21:08, 28 November 2024 (UTC)

I would welcome condensing the section of causes to the current state of knowledge, with less weight given to disproven or abandoned hypotheses, as well as yet unproven theories. In particular, I don't think the main autism entry has to describe why we have come to the conclusion that something is (not) a cause. Presentation of the research history & meta analyses backing the current understanding could be left to the causes of autism entry.--TempusTacet (talk) 23:11, 28 November 2024 (UTC)

Thanks! Yes - I just don't see the advantage of having more than a very short section on causes, when people can easily go to a separate entry on it; causes are of very little importance to the average reader, relative to many other things that this entry currently spends far too little time on or omits entirely. It's true that a large proportion of autism research money has been spent on (overwhelmingly inconclusive) studies hunting for causes, but this has never aligned with never aligned with community priorities for research. It's simply not very useful information for most people interested in learning about autism.

As Wikipedia:Summary style says, 'The original article should contain a section with a summary of the subtopic's article as well as a link to it' - no more than a summary. Otherwise we're dealing with two parts of the encyclopaedia that need to be maintained in parallel, and again, I think a big part of the reason this particular article is so badly out of date is because it's too big to maintain in its current form. Oolong (talk) 18:26, 29 November 2024 (UTC)

@Димитрий Улянов Иванов, the second paragraph of the lead section does not need to be in the lead. It is accurate, and should be noted further down (I think it, isn't it?) but I don't see any reason why it would need to be part of the concise summary of key points that opens the article. It certainly doesn't need a whole paragraph.

I am raising this here before deleting it, as a courtesy Oolong (talk) 16:23, 8 December 2024 (UTC)

Thanks for raising your concern, but please don't just delete it. The second paragraph is crucial because impairment, and developmental inappropriateness, are defining aspects of autism and thus warrant inclusion. The mere presence of symptoms/traits is not autism; they must be inconsistent with one's developmental level and socialcultural context, and especially be severe enough to lead to significant impairment in major life activities.

In essence, many people have elevated traits of autism and almost all of us occasionally experience its symptoms, so it would be highly inaccurate to exclude any of these; they are all equally important, and in combination, characterise autism. Just how we don't define ADHD as the mere presence of e.g. inattention, as this by itself would categorise everyone, we shouldn't do it for autism either.

I know you agree on the accuracy of this, but I hope this helps emphasise how these really aren't much more minor, unrelated features that can be delegated entirely to sections below. The first paragraph basically refers to the symptomatic characteristics of autism, which is understandable as it's trying to be concise, hence the second paragraph.

Alternatively, we could include this within the first paragraph and make it more concise, as other articles do, but risk poor readability.

For a comparison, if we took the article on ADHD, the first sentence defines it as follows:

"a neurodevelopmental disorder characterized by executive dysfunction occasioning symptoms of inattention, hyperactivity, impulsivity and emotional dysregulation that are excessive and pervasive, impairing in multiple contexts, and developmentally-inappropriate"

Because its underlying nature (executive dysfunction) and overarching symptom dimensions (e.g., emotional dysregulation or inattention) can be described in one or word phrases, and still comprehensively be covered (so we are not missing out crucial aspects), there is room to mention its other defining aspects within the same sentence. However, l I'd expect we'd find complicity replicating this for this article given that ASD's symptom dimensions by themselves are already lengthy to describe even in a summatory manner.

To account for this, two sentences might be able to be used in the first paragraph as was done previously, and perhaps shortening the description for its symptom dimensions if possible. However, I don't see the issue with maintaining it in it's current state, where the paragraph thereafter mentions this. This was split originally to help with readability.

With all of this said, I do support your removal on the 4th Dec of a paragraph that was just listing specific symptoms and reiterating some from the first paragraph. It wasn't adding much distinctively important detail and so appeared inappropriate for the lede.Димитрий Улянов Иванов (talk) 17:16, 8 December 2024 (UTC)

Okay, thanks for that. It definitely doesn't warrant that level of detail in the lead section - mentioning the two main diagnostic manuals by name, etc.

Two sentences might be just about justified. Do you want to see if you can get it down to that, or shall I just go for it? Oolong (talk) 16:52, 9 December 2024 (UTC)

For reference, the lead as a whole is currently 50% longer than the upper limit suggested in MOS:LEADLENGTH. Oolong (talk) 16:57, 9 December 2024 (UTC)

I can't read that policy at this precise moment, apologies for my ignorance, but I'd just like to note that I often see such policies suggesting articles should generally follow a specified length but if the topics are complicated and cannot be summarised so easily, exceptions are permissible. In any case, we should focus on omitting unnecessary detail. We should just keep that in mind, if it's true, considering the complexity of ASD so we aren't getting rid of necessary info. Димитрий Улянов Иванов (talk) 20:36, 10 December 2024 (UTC)

There shouldn't be anything but the most trivial information in the lead that isn't reflected elsewhere anyway. So it's not about removing information, it's about what are the few absolutely key things that anybody looking up autism ought to read about.

Yes, the length suggestion is a guideline, not a strict rule - but we really need to think carefully about what does and doesn't need to be included in approximately three paragraphs or so of accessible, introductory material. Oolong (talk) 18:05, 12 December 2024 (UTC)

No worries, two sentences should be a suitable change if it can be reflected properly this way. I'm quite constrained by time at the moment but I will try to review this as soon as I can and hopefully suggest some changes here, please feel free to suggest some too in the meantime if you wish! Димитрий Улянов Иванов (talk) 20:29, 10 December 2024 (UTC)

I have edited this section of the lead, aiming - per Wikipedia:Manual of Style/Lead section - to "Make the lead section accessible to as broad an audience as possible" and "avoid lengthy paragraphs and overly specific descriptions – greater detail is saved for the body of the article." Oolong (talk) 09:14, 15 December 2024 (UTC)

I've removed one paragraph from the lead that was almost entirely redundant. It's still far too long, and not very well balanced - it's not really the place to get into the nitty-gritty of different arguments. Overall it includes way more detail than a lead section should. Oolong (talk) 14:53, 4 December 2024 (UTC)

References

Section on Autistic Burnout

It seems unusual that an entire subsection has been designated for just one sentence on the topic. While it does link to the accompanying wikipedia article for further details, it would probably be better that such a short description was placed under a more overarching area (like associated features) or was expanded. Димитрий Улянов Иванов (talk) 14:00, 26 November 2024 (UTC)

Should we use {{Excerpt}}? or make it bigger? Anthony2106 (talk) 10:08, 27 November 2024 (UTC)

Rather than covering autistic burnout in a separate section, I suggest to create a section on (mental) well-being that could cover topics that are discussed in more detail in the Autism-friendly entry. This would also help to address the concern that the current article is overly focused on ASD as a medical condition.--TempusTacet (talk) 15:51, 27 November 2024 (UTC)

Yes, this is probably a better approach. It's good that it has its own entry; it obviously warrants more than a sentence in this one; it's one of several key concepts for autistic wellbeing that absolutely need to be covered in more depth here. Shutdowns and catatonia are (arguably) closely related; the former is closely related to meltdowns, the latter to autistic inertia.

The absence of anything on these topics is bizarre, as is the failure to cover anything about the sensory, social or task overload that often triggers them. Oolong (talk) 18:49, 28 November 2024 (UTC)

Personally, I'd rather it be expanded if possible as I'm sure there is more to be mentioned, which is better than maintaining it at it's current length. If that's problematic, it can certainly be moved to a more overarching section. Димитрий Улянов Иванов (talk) 01:04, 28 November 2024 (UTC)

The problem with "autistic burnout" is that it is a colloquial term. It describes an experience shared by a group of autistic people but neither is it known how large this group is (eg if it's a majority) nor do we know if it is an autism-specific condition or eg an umbrella term for exhaustion, depression, and classic occupational burnout. There are some early studies investigating the latter question (ie trying to view autistic burnout through a medical lens) but the findings are still inconclusive & contradictory.

Since the experience referred to as "autistic burnout" undoubtedly exists & as Oolong points out there is much that can be said about sensory and social experiences of autistic people, I believe that describing it in this context is the most appropriate way to include it in the Wikipedia entry.--TempusTacet (talk) 23:04, 28 November 2024 (UTC)

As a note, autistic burnout is well discussed in scholarly literature. Significa liberdade (she/her) (talk) 03:05, 30 November 2024 (UTC)

It is getting some attention in recent years, but not (yet) as a medical condition. There are a handful of studies that analyze self-reports with the aim to understand if what is colloquially called "autistic burnout" describes a well-defined state, why it occurs, and what people find helpful in recovery.

This is valid and important research but it does not belong in a section on co-occurring conditions (eg like autistic catatonia). Even if it turns out that through a psychiatric lens autistic burnout is an umbrella term for exhaustion, depression, and occupational burnout, this does not make it any less relevant or real.--TempusTacet (talk) 08:50, 30 November 2024 (UTC)

Semi-protected edit request on 29 November 2024

The language in the 'Early life' segment is too confident as it states inconclusive information. Consider revised expressions such as this one: "Some studies have explored associations between air pollution and heavy metals and autism, but findings remain inconsistent and inconclusive. While such complications may interact with genetic predispositions, their role in autism is not well understood." Tuutelis (talk) 02:09, 29 November 2024 (UTC)

@Tuutelis I don't know what text you want to be changed you can tell me or you could fix ten spelling mistakes and then edit the page yourself. You could also write subtitles for song samples on song pages. Anthony2106 (talk) 04:44/8, 29 November 2024 (UTC)

 Not done: it's not clear what changes you want to be made. Please mention the specific changes in a "change X to Y" format and provide a reliable source if appropriate. Bowler the Carmine | talk 06:12, 11 December 2024 (UTC)

Extent of Scientific Consensus on Terminology & Reconciling Perspectives

@TempusTacet, @Oolong

Hi everyone - I think it’s a good idea we divert the discussion here so it’s more organised and to invite participation from others. The topic of discussion is also much broader than referral to symptoms.

There are still two main issues that, after seeing the most recent replies, I don’t think have been adequately addressed.

First, I am still very confused as to why there is still thought to be an obfuscation with science and medicine. Most (perhaps all) of the citations I provided are not exclusive to the context of medicine, they range from the type of source (guidelines, consensus statements, diagnostic criteria, systematic reviews etc) and cover a variety of contexts, not merely medicine (symptom presentations and impairments, therapies and accommodations, epidemiology, implications in society, etc). I haven’t evidence overturning such a scientific consensus.

Second, a compatibility of neurodiversity with ASD diagnosis would be an accurate point for the article than continuing to present both perspectives in a conflicting way.

One can acknowledge that ASD represents the extreme end of a typical distribution of a psychological trait while at the same time acknowledging that those at the extreme end of this trait experience harm and impairment. We should expect this from a dimensional disorder on which we are imposing a categorisation or dichotomy.

In short, neurodiversity and a disorder diagnosis are not incompatible conceptualisations of the underlying autism spectrum.

What is inaccurate, really, is the idea of one or the other being fundamentally wrong - that is what contradicts the scientific consensus, from my understanding.

By the way, just for a more minor note, please keep in mind the context of citing the NHS website. Signs and symptoms can be interchangeable, while most sources use symptoms, some use a combination of both. The UK NICE (of which the NHS is categorised under) does attest to the validity of ASD as a disorder characterised by symptoms and varying severity etc in their guidelines, they just use ‘signs’ at times as well. The Wiki article is consistent with this on the title of the section. The NHS page for the public - which was referred to - is highly superficial in its descriptions and is not reputable relative to the peer-reviewed NICE guidelines.

To give one example of many inconsistencies, that NHS website says ADD is a separate disorder on the ADHD page - even though ADD hasn’t been a diagnosis for decades, since the incorporation of subtypes and now even those have been replaced with presentations of the same disorder. This is corrected on NICE guideline pages, which undergo substantial peer review compared with that page.

Димитрий Улянов Иванов (talk) 22:49, 1 December 2024 (UTC)

Димитрий, I don't think it is helpful to open yet another discussion section. As I've tried to explain in multiple different ways, there is no dissent over the scientific consensus. So far, nobody has come forward to claim that anything that is in the sources you researched & summarized is wrong. Nobody has advocated for introducing information into the Wikipedia entry on autism that would contradict the sources. (Of course, one could include novel findings or hypotheses that have not yet reached consensus level when presented appropriately, but I don't think that's revelant right now.)

Most importantly, nobody has advocated for "the idea of one or the other being fundamentally wrong". You say "neurodiversity and a disorder diagnosis are not incompatible conceptualisations of the underlying autism spectrum" and I would not only agree, but broaden this statement. While you have repeatedly said that you agree that there is more to science than medicine, you continue to almost exclusively list sources that look at the world based on a medical model. This is a very relevant and productive perspective on autism, but a restricted one (as all perspectives are). Neuroscientific, genetic, therapeutic, educational, sociological, you-name-it perspectives are scientific & relevant as well. We cannot exclude those, even if they use a different terminology or use the same words with different meanings.

I still think that you conflate discussions about what language one should use to represent the scientific consensus with discussion about the validity of the scientific consensus. One can use different words to describe the very same thing. Above, in a discussion with Oolong, I've already shared this recent talk by Francesca Happé, whose work you'll likely be familiar with. Since she was a member of the DSM-5 workgroup on neurodevelopmental disorders, I believe it's fair to charaterise her as a mainstream autism researcher. In the talk (and elsewhere), she manages to present highly accurate information using language that includes medical terminology where necessary but contextualises and complements it so that it remains accurate but does not sound overly negative/harmful to the untrained ear. I'm sure that the audience of that talk walks away with a much better understanding of autism than if she had strictly used the language of the DSM that she helped author.

My suggestion is that we start working on improving the entry, as I'm sure that we'll have little disagreement about what information to include.--TempusTacet (talk) 11:10, 2 December 2024 (UTC)

Very cogent sentiments, I agree wholeheartedly. Urselius (talk) 17:28, 2 December 2024 (UTC)

Thanks again for your contributions!

There's a point here that I sort of disagree with, and I think it's worth setting out carefully why that is: there is a sense in which 'neurodiversity' and 'disorder' entail incompatible conceptualisations of autism. The most basic insight of the neurodiversity paradigm is that things which have been described in pathologising terms may not really be pathological: not diseases, not disorders.

It's a genuine philosophical difference in how we look at human variation, accompanied by a critique of the use of these and various other pathologising terms, as well as things like priorities for research and practice.

As the NAS puts it, in its guidance on how to talk and write about autism, "most autistic people (and many others) do not consider autism to be a disorder." (see also Bagatell 2007 and Kapp et al 2013 on this particular point).

On the other hand, according to the criteria set up by professional bodies like the APA and NICE, obviously autism is defined as a disorder! The DSM and ICD effectively ensure this by fiat - albeit without much regard for what words like disorder actually mean in general use, and often without close examination of terms like 'symptom'. The diagnostic manuals are obviously very important, and very few advocates of neurodiversity are opposed to 'diagnosis' wholesale - even if we contend that's not really the right word for it!

It is inevitable that there will be some medical language in an entry of this sort - as there is (cautiously) in the Cleveland Clinic page I linked to about autism, for example. However, in many cases there are other terms in use which are at least as accurate, and less likely to make people feel bad! 'Risk' is just 'likelihood' with a value judgement attached, for example.

In a few cases, like 'symptom', there is a strong case that the most common term in medical circles is not only unduly negative, but actively misleading. A symptom is typically seen as resulting directly from a condition (usually a disease), and

Thanks for the link to the Happe lecture - I saw her deliver an earlier version of this a few years ago at the Scottish Autism Research Group conference, so I won't watch this all the way through, but yes, I agree that for the most part she hits a good balance in the way she talks. For her to come this close to being on board with neurodiversity, she has come a long way across her life career.

I have noticed over the years that a lot of opposition to neurodiversity comes from people who seem to think it implies things that it does not, and which very few people who advocate it would ever suggest! Perhaps we can make progress here if we make sure to focus on reconciling any tensions between people's actual positions, and reflecting what they mean in the text of the article. Oolong (talk) 17:35, 2 December 2024 (UTC)

Oh, a quick example of that kind of mistaken opposition to the concept of neurodiversity: I still occasionally run into people who think accepting neurodiversity implies that autism isn't a disability - even though the neurodiversity movement largely arose out of the disability rights movement, and neurodivergent people are disproportionately likely both to be disabled for other reasons, and to have more disabled family members.

It has never been clear to me what is lost when we describe autism as a disability but not a disorder, but obviously some people are attached to the latter term! Oolong (talk) 17:43, 2 December 2024 (UTC)

I do agree that there is a "genuine philosophical difference" between a medical model and a neurodiversity perspective. Both are limited & perhaps flawed in their own ways, and are incompatible. But I think it's not necessary to reconcile them. Both can and do exist, and a Wikipedia entry can describe them.

As you say, "in many cases there are other terms in use which are at least as accurate, and less likely to make people feel bad", ie language promoted by the neurodiversity movement has been picked up across various fields. These days, using words like "neurodivergent" or "differences"/"difficulties" instead of "deficits" does not necessarily imply strong alignment with the neurodiversity perspective. This language is used in the context of a medical model of autism as well, a lot of people that would not subscribe to a neurodiversity model have adopted it.

I'll stop quoting you & repeating myself here. I hope that we have disentangled the positions & can focus on trying to improve the article.--TempusTacet (talk) 18:00, 2 December 2024 (UTC)

Yes, this is absolutely correct, and I appreciate you expressing it so clearly. Oolong (talk) 20:42, 3 December 2024 (UTC)

"Neurodivergence" and "neurodiversity" are all-encompassing political terms meant to group together people with otherwise-unrelated mental disorders into one group. It is not the case that these are used in the medical context, nor are scientifically validated terms, for characterising NDDs.

"Neurodiversity" is a property of the human species as a whole. It includes every single person that's ever been born. "Neurodivergent" is basically a synonym for people with mental disorders, but it's poorly defined. There's a lot of disagreement about who falls under the "neurodivergent" banner and which neurological conditions are applicable. There's also the issue that it's part of this us-vs-them mentality that's contributing to the self-imposed isolation and alienation of people with mental disorders from the rest of society. At times it's being used to build walls and divide them, not build understanding and bridges.

The term "neurotypical" is only accurate when localised to the dimension of a specific trait, such as executive functioning. Neurotypicality does not occur in a general sense despite it being used that way (we all have thousands of psychological traits, each with unique variations, deficits, gifts, aptitudes etc).

Even Judy Singer, who coined the term 'neurodiversity', has talked here and here about the use of neurodiversity by neurodiversity advocates to cause division.

"Take Home Lesson: ND is not a classificatory term dividing us from them. We are all Neurodiverse. We live on a Neurodiverse planet in which amoral nature generates endless genetic diversity, while we humans have evolved the capacity to make judgments about nature’s bounty. What Neurodiversity brings us is a challenge to find a place for everyone and to distribute the bounty fairly."

Ultimately, however, the concept of neurodiversity (rather than the way it's used politically to classify people) is not incompatible at all with the status of NDDs as valid disorders, which again is objectively far from limited to a medical context. One the degree of diversity reaches an extreme degree so as to cause functional impairment is when it becomes a disorder. Indeed this fact is reliant on there being an underlying spectrum. For further details, see Barkley et al. (2002), Nelson, 2021 and Shields et al. (2020). Димитрий Улянов Иванов (talk) 00:52, 4 December 2024 (UTC)

Why are you explaining this to us?--TempusTacet (talk) 01:11, 4 December 2024 (UTC)

Because you said things like “This language is used in the context of a medical model of autism”, to which I replied to explaining that this isn’t the case.

And the other commenter said “ in many cases there are other terms in use which are at least as accurate, and less likely to make people feel bad”, the first part of which is objectively wrong and the latter unsubstantiated and I disagree with - so I offered my perspective and cited references.

I am trying to add to the discussion, and I don’t get your reply and the repeated need to have to explain the basis of my comments. Димитрий Улянов Иванов (talk) 01:27, 4 December 2024 (UTC)

I really don't know how else to say this, so I'll be frank with you: Do you really think it adds to this discussion to give a Neurodiversity 101 mini-lecture? What lets you believe that this is necessary?--TempusTacet (talk) 01:45, 4 December 2024 (UTC)

I think we've nearly belaboured this long enough, so I'll focus on main residual issues. In light of these, and the absence of a valid response, I am once again faced with the problem that the medical interpretation of the scientific evidence must be considered flawed and even inadmissible.

First, a cursory look at the talk page reveals that people have argued that inclusion of one or the other perspective is fundamentally wrong, through advocating to remove terms (e.g. disorder) from the article, to blend comorbidity with ASD severity, as well as opposing the validity of scientific consensus itself.

To cite 2 examples, on 8th October, a user initiated a section entitled "Remove "Disorder" and add Coocuring Conditions". On 2nd Nov, Oolong wrote, as a reply to my comment defending the article's inclusion of the term, "It is incorrect to suggest that there is a general scientific consensus that autism is a disorder. The neurodiversity perspective is taken seriously by a large and growing number of researchers, and contradicts the assumption that differences like autism should be seen as disorders." - who has since adhered to this point repeatedly, even after my extensive references to the contrary, based on incorrectly equating them overall to people's mere use of terms.

I would therefore like to repeat that it remains a significant issue requiring acknowledgement.

This leads into my main point I would like to reiterate about the - as I think - inappropriate generalisation of medicine. Since we agree on the validity of a consensus, our contention concerns its unanimity across fields. I have already elaborated that the vast majority of the peer-reviewed scientific references cited here pertain to and originate from a wide array of contexts within autism; including, as you write "Neuroscientific, genetic, therapeutic, educational, sociological". Unfortunately, it has been argued that the scientific consensus demonstrated is exclusive to the context of medicine. This is now the repetition of a wrong argument as indicated by criticism (e.g. 22:49 UCT, 1 December 2024). If you are unable to offer countering evidence, I would ask you to abstain from this claim – or at least handle such criticism more respectfully by not ignoring it.

Because of the interchangeability of terms and establishing their appropriateness in different contexts, I agree with your point "one can use different words to describe the very same thing". Validating terminology scientifically is however of utmost importance according to Wikipedia guidelines so they are not minimised or completely removed from the article (as people advocate). This does not contradict the simultaneous use of potentially conflicting terms when accountingj for their context, which ultimately is what we are aiming to focus our deliberations and implement edits on.

Let us conclude that there has been a failure to address the broader context and nuances required for accurately resolving these issues. I think that the medical interpretation of the scientific evidence should not be admissible and lacks careful consideration. Димитрий Улянов Иванов (talk) 20:55, 2 December 2024 (UTC)

You say that you feel that the "the broader context and nuances required for accurately resolving these issues" have not been addressed, however, there have been several attempts to explain to you that you appear to be arguing against a position nobody involved in the discussions holds. I don't think that you do this intentionally, but the only way to resolve this is for you to understand what others are saying, rather than repeating the same arguments over and over again.

I'm not saying that you're wrong, and I'm certainly not ignoring what you're writing. But you seem to be misunderstanding my position & my goals, which makes it difficult to have a discussion. I'm not trying to "offer countering evidence", because there is nothing to be countered. You don't have to convince me of what your sources say about autism. I'm familiar with the major guidelines & the discourse within academic research and outside of it.--TempusTacet (talk) 23:48, 2 December 2024 (UTC)

What? I am directly responding to positions you hold.

You claimed in your comment I was replying to that “you continue to almost exclusively list sources that look at the world based on a medical model”, to which was the basis of my reply - that the sources are in fact hardly exclusively medical and that you have failed to substantiate your claim that they are.

Additionally, you claimed “nobody has come forward to claim that anything that is in the sources you researched & summarized is wrong. Nobody has advocated for introducing information into the Wikipedia entry on autism that would contradict the sources”, as well as “Most importantly, nobody has advocated for "the idea of one or the other being fundamentally wrong". To which I replied citing examples of how people have, in fact, advocated for removing the term ‘disorder’ from the article as well as opposing the validity of the sources I cited.

This is the complete antithesis of a strawman/refuting nonexsistent points. Respectively, your comment makes little sense to me. Димитрий Улянов Иванов (talk) 00:06, 3 December 2024 (UTC)

I do understand that my comment makes little sense to you, and I hope we can continue from there.

In the section Talk:Autism#Signs_and_symptoms_-->_Common_characteristics you cite the ICD-11, the DSM-5, NICE guidelines, the NIMH website, the ESCAP, the AWMF guidelines, the HAS guidelines, the CPS guidelines, and the World Federation of ADHD. All of these share the same medical/diagnostic/management perspective on autism. The only exception is perhaps Autism-Europe, which is not a public health entity but an advocacy organization, to whom you attribute the ESCAP practice guidance for autism. I don't see their relationship to that document, other than that the PDF you linked is hosted on their website.

To be clear: All the sources you've listed meet WP:MEDRS and reflect the scientific consensus on autism from the point of view of clinical medicine and public health bodies.

To say that people who advocate for alternatives to the term "disorder" oppose the validity of the sources is insincere. The ESCAP guidelines, in their abstract, say that autism is "a heterogeneous, neurodevelopmental condition that persists throughout life". The CPS standards of diagnostic assessment say "There are no diagnostic biomarkers for ASD. This condition is diagnosed clinically". Using the word "condition" rather than "disorder" (which are interchangeable here) hardly draws into question the validity & scientific soundness of these guidelines.

We can also look at the NICE guideline Autism spectrum disorder in under 19s: support and management you listed among your sources. On page 5, they define autism as follows:

The term autism describes qualitative differences and impairments in reciprocal social interaction and social communication, combined with restricted interests and rigid and repetitive behaviours, often with a lifelong impact. In addition to these features, autistic children and young people frequently experience a range of cognitive, learning, language, medical, emotional and behavioural problems, including: a need for routine; difficulty in understanding other people, including their intentions, feelings and perspectives; sleeping and eating disturbances; and mental health problems such as anxiety, depression, problems with attention, self-injurious behaviour and other challenging, sometimes aggressive behaviour. These features may substantially impact on the quality of life of the individual, and their family or carer, and lead to social vulnerability.

The clinical picture of autism is variable because of differences in the severity of autism itself, the presence of coexisting conditions and levels of cognitive ability, from profound intellectual disability in some people to average or above average intelligence quotient (IQ) in others.

This description reflects our current understanding of autism from a clinical/medical point of view that avoids terms that are perceived & criticised as overly negative or harmful. It's probably not quite in line with some of the more far-reaching recommendations that Oolong shared above but I think it's another good example of how to accurately describe the medical/clinical understanding of autism. When you study the guideline, you'll see that it does use the term "disorder" where it is required for precision (eg when talking about diagnoses), but it rarely uses the term "symptom" but prefers "behaviours" (which is more specific in many circumstances) and "features". (It was updated back in 2021 to use identity-first language & "features" instead of "symptoms", cf page 36.)

If you still find that I make little sense, I'd like to ask you to interrogate my position rather than dismissing it.--TempusTacet (talk) 15:58, 3 December 2024 (UTC)

I am not merely dismissing your permission. I appreciate that you are replying with an individual consideration of the references, so I'd to take the time to explain the references in detail.

International Consensus Statement (Faraone et al., 2021-2024)

The International Consensus Statement on ADHD was compiled by the World Federation, but is not representative of them (the one organisation). In addition to the 80 authors, it is endorsed by 403 experts and by a plethora of professional associations of people with lived experience of neurodevelopmental disorders (NDDs), of researchers in a variety of contexts. From 27 countries and 6 continents, the ICS clearly highlights the perceived needs and strength of feeling among millions of people with ADHD around the world (see Supplemental Figure 2).

While I'd rather focus on ASD specifically, the ICS raises crucial points on the establishment of NDDs. For instance, it is concluded that "ADHD meets standard criteria for validity of a mental disorder established by Robins and Guze (Faraone, 2005; 1970). The disorder is considered valid because...", there, they refute the idea that biometric tests are needed for establishing neurodevelopmental disorders. So the absence of such diagnostic biomarkers do not dispute the validity of the term, or somehow makes it inappropriate.

References on Autism

Your claim that "All of these share the same medical/diagnostic/management perspective on autism". This is highly inaccurate, and is again my main contention.

Here are many examples of how diverse the fields and contexts the references take perspectives on are. Only small number were based exclusively on diagnosis or medicine (which I'll omit below for emphasis).

ESCAP guideline covers:

"prevalence, socio/environmental considerations, prognosis in autism, assessments in adulthood, provide access to full and effective participation and inclusion in society, common co‑occurring conditions, early markers of autism, individual rights, making the environment more “autism friendly”, transition to adulthood, social skills, naturalistic learning/development, treatments for co-occurring conditions"

Note that these guidelines are indeed done in collaboration with Autism Europe (AE), I just had a re-look at the citation and the first section after the abstract substantiates this.

The International Consensus Statement on ADHD covers:

Neuropsychology of ADHD, genetic linkage, history of the disorder, symptomology and impairments, brain imaging, aetiology, epidemiology, comorbidities, effects of societal stigma, economic burden, quality of life, education, substance use, crime and delinquency etc.

The Consensus Statement of autism conducted by the Indian Academy of Paediatrics invited the following range of experts:

Psychologists, Remedial Educators, Pediatricians, Developmental Pediatricians, Psychiatrists and Pediatric Neurologists

In order to cover:

Aetiology, educational management, disability certification, public health burden, diagnosis & screening, comorbidities, therapy, symptomology, associated impairments, prognosis

The following systematic reviews cited: Dietert et al. (2017), and Mojgan et al., (2017) were about the environmental risk factors for autism.

The systematic review by Belmonte et al., (2022) was about digital tools for early identification of autism.

The German National Guidelines: "The guideline group comprised 14 clinical and scientific expert associations from the German healthcare system, in addition to representatives of relatives and patients".

The NIHM guidelines are disseminating the topic ontologically, and are covering autism generally for lay people (not to be confused with the NIHM editorial cited).

Consensus guidelines on ASD by Howes et al. (2017) covered aetiology, neuroanatomy, comorbidity, and general research directions.

The NIHM article u/Oolong cited to oppose the term symptoms is based on the ethical/social use of terminology. They concluded that "Both autism and autism spectrum disorder (or ASD) are acceptable ways of referring to the disorder, depending on the audience and the context" and earlier on they state "ASD should never be referred to as a mental illness or a disease". This is at complete odds with u/Oolong's claim (made on a video he referred us to) that the Wikipedia article, by using the term disorder, implies autism is a disease.

The textbook by Volkmar, 2021 appears to have comprehensively covered the variety of fields and contexts of autism.

The review by Nelson, 2021 concluded "the fact that autism is a disorder does not entail that medicalization is the only course".

The review by Shields et al. (2020) was attempting to establish the validity of autism as a disorder in the context of individual rights, disability, and as matter of scientific fact generally.

In conclusion, the references I cited clearly cover numerous fields and are endorsed from a variety of contexts, far beyond medicine and diagnosis.

UK National Institute for Health & Care Excellence

It is a bit disheartening to see the NICE guidelines misrepresented as to their perspectives. It is not the case that they "avoid" the aforementioned terminology because of stigmatisation. In their guidelines, they state "For this guideline we will use the term 'autism' to include all autism spectrum disorders", and do establish and refer to it as such. This indicates the terms autism, and ASD (in full) are interchangeable, typically for simplicity. Additionally, they refer to varying severity levels, symptoms, impairments etc of autism across the guideline, thereby contradicting the opposition to these terms by some in this talk page.

Conclusion

No sufficient evidence has been given to suggest the use of these terms are stigmatising and therefore should be minimised in the article relative to ones they're interchangeable with.

Wikipedia guidelines state that terminology and article content must be based on the consensus of scientists/professionals in the field. As shown here, the consensus is unanimous and across contexts.

I am also puzzled by the fact that the level of evidence requested for inclusion of these terms is substantially higher than that of other neurodevelopmental disorders, such as ADHD.

For these reasons, I keep strongly endorsing the inclusion of these terms in this article in a way that holistically considers all life contexts.Димитрий Улянов Иванов (talk) 23:36, 3 December 2024 (UTC)

I'd like to refer you to my last comment. You are not engaging with what I've written, apparently misunderstand it, and are instead arguing against positions I do not advocate for and attempting to counter claims I've never made.

I strongly object to the idea that I'm misrepresenting the NICE guidelines, and I'm most certainly not questioning the validity of neurodevelopmental disorders (or the terminology used to describe them) in the sense that you imply. (Also, I'm well aware of how medical guidelines are created, their scope, and their role.)

If you want this discussion to lead anywhere, you'll have to work to understand what I'm saying, which I've now tried to explain to you in multiple different ways.--TempusTacet (talk) 00:28, 4 December 2024 (UTC)

First, I am addressing your claim that all of the references are exclusively taking a medical or diagnostic perspective. Quoting and replying to a claim is the antithesis of a strawman. As I've shown conclusively, the claim is wrong and thus should not be used to conclude that the relevance of these have not been established in other contexts.

Second, you were implicitly advocating for the minimisation of terms because of stigmatisation, the matter of which I was addressing in my reply - not that you were invalidating the terms themselves. I was concerning the degree of interchangeability, not validity. I did talk about the validity of the term disorder in the context of biometric data, but only as a response to you suggesting there is no biometric test in this context. Even that statement was really intended to just add to the discussion (because it has been argued in the public that the disorder is invalid in the absence of biometric tests), I never suggested you yourself adhered to the claim. Димитрий Улянов Иванов (talk) 00:38, 4 December 2024 (UTC)

Please respect that I have repeatedly and explicitly told you that what you claim I'm advocating for or claiming is incorrect. It is also not on you to decide whether you have "conclusively shown" something.

I have said that your sources "reflect the scientific consensus on autism from the point of view of clinical medicine and public health bodies". This is already evident from the nature of the sources, and you have further substantiated that claim in your responses.

You have repeatedly expressed that what I'm saying makes little sense to you or you find it puzzling. I've invited you to ask questions so that we can move past this confusion & get to a shared understanding.--TempusTacet (talk) 01:08, 4 December 2024 (UTC)

I shan’t respect it, because you have in fact claimed things - as I show with quotes, that I directly refute.

My reply literally showed, with quotes, how the references were not all coming from a medical context, yet you claimed they were. May I ask then, how are systematic reviews investigating the environmental risks of autism talking about medicine? How are the guidelines from ESCAP, that I showed cover a variety of other fields, just talking about autism from the context of medicine? How are the peer-reviewed reviews on the social and political implications of terminology coming at it from a medial perspective, when they explicitly conclude how it’s not a medicalisation?

You keep making claims, to which I refute, and then you pretend you didn’t make these claims so the points I made go unaddressed. So continuing this discussion is really quite pointless. Димитрий Улянов Иванов (talk) 01:22, 4 December 2024 (UTC)

You are not refuting claims that I made, because you don't understand what I'm saying. If you cannot respect that I, as the person who is making claims & stating positions, know what these claims & positions are, any attempt at having a productive discussion is futile.--TempusTacet (talk) 01:27, 4 December 2024 (UTC)

I am, and have proved it with quotes. If you retrospectively don’t hold the claim, that is a separate issue.

To make this a bit more simpler if you still are not understanding. You claimed that “all” of my sources are, and are only, medically or diagnostically based. To cite one example of my references that disproves this claim, is the systematic review I cited reviewing the environmental risk factors of autism. Because this has nothing to do with a medical context, it refutes your claim. That review is also relevant because it uses the same terminology but clearly in a different context.

Thanks again for the discussion, but I’ll end it here. Димитрий Улянов Иванов (talk) 01:35, 4 December 2024 (UTC)

At the very worst 'All of these share the same medical/diagnostic/management perspective on autism' is very slightly inaccurate. You've evidently selected a bunch of sources that broadly share your chosen perspective. Tempus and I have both pointed out multiple sources, and types of sources, that directly refute your conclusion. You assert that a statement on environmental 'risk factors' 'has nothing to do with a medical context' - no, this categorically does not contradict Tempus's point, and the fact you think it does shows that you have not in fact understood what was being communicated.

I hope you will indeed end this discussion here, reflect on what is actually under contention, and work harder to understand the positions that other people are taking here before you return.

You might find it helpful to read and fully digest Talk:Autism#Autism, Wikipedia and epistemic injustice if you are sincerely interested in working to improve this entry in future. Thank you. I can see that this has been a frustrating exchange for you, as it has for all of us, and I wish that could have been avoided. Oolong (talk) 14:35, 4 December 2024 (UTC)

I'd like to refer you to my previous comment, where I explicitly quoted the variety of fields and perspectives the references undertook, were endorsed by, and originated from, to debunk the claim that "All of these share the same medical/diagnostic/management perspective on autism". It is therefore not "slightly" inaccurate.

Unfortunately, these arguments have been omitted from your reply.

We also disagree on why I felt it's necessary to end the discussion. On the contrary, continuing to misrepresent and ignore extensive scientific evidence may be unhelpful. I also suggest you read Wikipedia's policies on the standards for inclusion of content in such articles. Димитрий Улянов Иванов (talk) 16:42, 5 December 2024 (UTC)

Again, I'm afraid you are just misunderstanding the assertion you are trying to argue with. I don't know what else to tell you. Oolong (talk) 18:20, 5 December 2024 (UTC)

Glaring Omissions

One of the reasons I've highlighted the excessive length of this article is because, despite being around a third longer than it probably should be, it completely misses out several things that are absolutely key for anyone to understand who is interested in learning about autistic people.

We can discuss how best to cover these, but for starters, I just wanted to make a quick list. Most of these are things which anyone who's conversed with multiple autistic people should very much expect to see covered.

• Autistic meltdowns (not sure how these aren't even mentioned in passing here when they have their own entry)
• Sensory overload
• Shutdowns
• Executive dysfunction and/or autistic inertia
• Hypermobility and EDS (co-occurring; actually, the whole section about co-occurring conditions is overdue a radical overhaul)

There are also topics like Autistic burnout and augmentative and alternative modes of communication (AAC) which clearly deserve more than a passing mention. I'm sure there are others I'm forgetting right now!

We might want to refer, here, to some other guides to autism written for the general public. We should certainly be looking outside of the scientific literature as such to help assess what autistic people, family members and relevant professionals see as important, and bear that in mind when prioritising things for inclusion: I would suggest that a decent place to start would be studies looking at community priorities for research, e.g. ; I also support the NIH's recommendation to "Check a variety of sources, including self-advocacy groups and organizations led by the communities you are writing about, to see what language they use and why."

Oolong (talk) 17:38, 4 December 2024 (UTC)

off-topic digression

Throughout several Wikipedia policies and guidelines it has been established that non-scientific sources generally should not be used in shaping such content in articles.(1),(2) Unfortunately, these aspects have been omitted from the post. While it is valid to suggest expanding the article to include these additional symptoms, associated features, and impairments of ASD, such contributions must be grounded in reputable, secondary and peer-reviewed scientific sources to accurately reflect the status of the field. I'd also like to note that we carefully review the evidence before linking executive dysfunction and other associations directly to ASD. As I recall, the disorder does not have primary nor pervasive effects on EF but may secondarily impact individual components of EF, such as verbal working memory, as a consequence of delays in the development of language. This would differ from other disorders, including ADHD, where executive dysfunction is primarily attributable, and which is also comorbid with ASD in a substantial minority of cases. In short, the nuance with these sort of relationships should be emphasised so we distinguish between core symptoms, primary and secondary associations, etc so it's not written in a possibly misleading way. Димитрий Улянов Иванов (talk) 17:22, 5 December 2024 (UTC) I'm going to have to fundamentally disagree with your characterisation of the contents of Wikipedia:Reliable sources, and the status of the essay you keep citing as if it was a set of Wikipedia guidelines. At the same time, I am all for working with peer-reviewed scientific sources to accurately reflect the status of the field here; there is just no reason they need to be our only sources, because we are describing human experiences here, not biomedical facts or recommendations. I discuss this in some depth in my recent essay. Either way, all of these topics have received significant scientific attention; just not nearly as much as they should, because autism science is systematically out of step with what autistic people, our families and people working with us all say we need. On executive dysfunction in autism: 23,100 Google Scholar results and it isn't even mentioned in the Wikipedia entry! Genuinely baffling. I am of course with you that we should be writing about it with nuance, and not in a misleading way, Oolong (talk) 18:33, 5 December 2024 (UTC) It is bizarre for someone to "disagree" with "my" characterisation" of Wikipedia policies. Adhering to guidelines is about facts not interpretation or agreement. Wikipedia:Reliable Sources, which is an "an English Wikipedia content guideline... that editors should generally follow", concludes: "Material such as an article, book, monograph, or research paper that has been vetted by the scholarly community is regarded as reliable, where the material has been published in reputable peer-reviewed sources" And further on they state: "Research that has not been peer-reviewed is akin to a blog, as anybody can post it online. Their use is generally discouraged" And that: "Many Wikipedia articles rely on scholarly material. When available, academic and peer-reviewed publications, scholarly monographs, and textbooks are usually the most reliable sources" Wikipedia:Scientific consensus concludes: "It is important to note that in forming its consensus it is the members of a particular scientific discipline who determine what is scientific and what is questionable science or pseudoscience. Public opinion or promoters of what is considered pseudoscience by the scientific consensus hold no sway in that determination. (See Wikipedia policy and guidelines regarding Undue weight, extraordinary claims sourcing, verifiability, reliability, and dealing with fringe theories.)" As one can see above, Wikipedia:ScientificConsensus in fact substantiates the conclusion according to policies and guidelines. Considering that you have shown to repeatedly misrepresent or ignore citations people cite you and use false claims of strawmen as a deflection, trying to engage constructively is futile. I've the cited the above references and quotes so other readers can be aware. Димитрий Улянов Иванов (talk) 19:11, 5 December 2024 (UTC) You're implying that I'm somehow going against the guidelines, apparently without any basis at all? As you are presumably aware, Wikipedia:Reliable sources discusses a wide range of non-scientific sources. I have ignored citations that are irrelevant to the point of hand. I haven't misrepresented anything. This is an egregiously false accusation. Oolong (talk) 19:18, 5 December 2024 (UTC) You claimed that "We should certainly be looking outside of the scientific literature" and then listed sources, such as self-advocacy books to refer to, in the context of rather than scientific literature. So indeed, it violates the above guidelines which state reliance should occur primarily on reputable, peer-reviewed sources and that non peer-reviewed sources hold no sway in the determination of article content, especially when the aforementioned sources exist (which they do for these issues). This is why guidelines are ultimately in place; to prevent opinion pieces, editorialisation and unreliable sources from dominating articles and overturning the scientific consensus. Otherwise, there'd be substantial opportunities for misinformation to be included because of the existence of e.g. advocacy groups espousing them, including misinformation you presumably oppose. Димитрий Улянов Иванов (talk) 19:29, 5 December 2024 (UTC) You are grossly misrepresenting Oolong's statement. Oolong wrote: "We should certainly be looking outside of the scientific literature as such to help assess what autistic people, family members and relevant professionals see as important, and bear that in mind when prioritising things for inclusion: I would suggest that a decent place to start would be studies looking at community priorities for research, ..." In no way does this suggest that Oolong advocates that in a situation where we have peer-reviewed studies or consensus guidelines stating something and we can also find another source that contradicts it, we should dismiss the scientific sources. You can also see that, with the exception of the BPS article and Autistica (hardly a fringe group), everything that follows are in fact peer-reviewed papers published in mainstream journals.--TempusTacet (talk) 20:24, 5 December 2024 (UTC) My apologies, after re-reading that, I can how it can be interpreted in the way you are emphasising by adding italics to their words, so I see how I misrepresented the comment. However, this was not a gross misrepresentation. What people subjectively "see as important" could mean viewpoints contradicting science, and to "bear that in mind when prioritising things for inclusion" could thus be problematic. Importantly, I also kept in mind the statement Oolong cited and supported that we: "Check a variety of sources, including self-advocacy groups and organizations led by the communities you are writing about, to see what language they use and why [emphasis added]" Therefore, note how their comment doesn't concern just assessing the prioritisation of content inclusion, but the specific types of language used as well. So according to their suggestion, they imply certain language used in the article (like terminology) can be influenced based on looking outside of the scientific literature to substantially less reputable sources they listed. This would indeed be problematic in the context of the guidelines and policies; and as I recall, they have expressed comparable viewpoints elsewhere. Димитрий Улянов Иванов (talk) 20:50, 5 December 2024 (UTC) Thanks for carefully considering what I wrote! Regarding language, Oolong wrote: "I also support the NIH's recommendation to "Check a variety of sources, including self-advocacy groups and organizations led by the communities you are writing about, to see what language they use and why."" This is a verbatim quote from the linked NIH style guide, and it is a suggestion to study language use across sources to inform & perhaps evolve ones own language use. I can hardly take any issue with this, but would instead encourage everyone to do that from time to time & interrogate their own use of language in different communication settings.--TempusTacet (talk) 21:05, 5 December 2024 (UTC) Thanks for this. Interestingly, I see we have this a Wikipedia essay (which, again, does not constitute guidelines!) on disability style advice: "Many autistic people, as well as those in the autism rights movement, do not view autism as a disease or disorder. Care should be taken when editing WP:BLPs, or pages related to the autism rights movement, to avoid describing autism through pathological terms like risk factors, symptoms, and treatment. Care should also be taken on BLPs to refer to the subject by using the language the subject prefers and the language the subject personally uses to self-identify ("autistic man", "woman diagnosed with Asperger syndrome", etc.)." More significantly, the Wikipedia Manual of Style says "editors should seek to write articles accessible to the greatest possible number of readers. Minimize the use of jargon, and adequately explain its meaning when it is used." Making articles accessible to the greatest possible number of readers obviously requires some consideration of views of non-scientists! Here is an excellent NHS reference on accessible language that is very relevant to this context. Oolong (talk) 22:10, 5 December 2024 (UTC) There are also WP:WFTWA and WP:SUFFER in MOS:MED, which broadly say the same thing but specifically for medical topics. (Apologies if you had already linked this somewhere else.)--TempusTacet (talk) 18:21, 6 December 2024 (UTC) Thanks, I'd seen some of this but there are some quality nuggets in there that I'd missed. "Choose appropriate words when describing medical conditions and their effects on people. Words like disease, disorder, or affliction are not always appropriate." ...how interesting. The Manual of Style also directs editors to style guides from non-scientific sources like the National Center on Disability and Journalism and the University of Kansas's Research & Training Center on Independent Living for more information. Well, well! Who'd've thought? Oolong (talk) 19:46, 6 December 2024 (UTC) It really was a gross misrepresentation, I'm afraid. My words were not particularly ambiguous at all: you simply read something into them that I had never suggested, and responded - aggressively - to the meaning you imputed. My inclination would be to hide this entire digression in a collapsible section, to make it (much) easier to discuss what is actually being proposed, as per the 'collapse' section here, but the guidelines say that this should be done by an uninvolved editor. Any thoughts? Either way, I would appreciate it if we could get on with discussing how to include key aspects of autistic experience that are currently omitted entirely. Some of them obviously fit into sections that already exist; others, less so... Oolong (talk) 20:28, 6 December 2024 (UTC)

"Throughout several Wikipedia policies and guidelines it has been established that non-scientific sources generally should not be used in shaping such content in articles.^(1),(2) Unfortunately, these aspects have been omitted from the post."

Wikipedia clearly has a use for non-academic sources, Wikipedia:Reliable_sources/Perennial_sources lists the Associated Press and Digital Trends as reliable and they are not academic sources (at most, greyfield literature).

Perhaps you are trying to argue that this article in particular meets some higher standard? If so, what is the policy that you are referring to here? Are you making the argument that the categories listed in Wikipedia:Biomedical_information should apply or not apply? Patrickpowns (talk) 19:43, 5 December 2024 (UTC)

There seems to be a slight but important misunderstanding here. Non-peer-reviewed sources should not replace/overturn reputable, peer-reviewed sources when they are available, particularly with the implicated topics. If pertinent scientific sources are not available, then non-peer-reviewed sources may be acceptable. From my understanding, the main exception to this concerns matters that are highly subjective or societal in nature (e.g., public controversies), where it's opinionated rather than fact based.

In short, some non-scientific sources may be reputable per se but are less reputable in relation. This is why the person I was replying to was wrong to state: "We should certainly be looking outside of the scientific literature" for these highly scientifically implicated topics.

For further details:

Wikipedia:Scientific consensus concludes:

"It is important to note that in forming its consensus it is the members of a particular scientific discipline who determine what is scientific and what is questionable science or pseudoscience. Public opinion or promoters of what is considered pseudoscience by the scientific consensus hold no sway in that determination. (See Wikipedia policy and guidelines regarding Undue weight, extraordinary claims sourcing, verifiability, reliability, and dealing with fringe theories.)"

Wikipedia:Reliable Sources, which is an "an English Wikipedia content guideline... that editors should generally follow", concludes:

"Material such as an article, book, monograph, or research paper that has been vetted by the scholarly community is regarded as reliable, where the material has been published in reputable peer-reviewed sources"

Further on, they state:

"Research that has not been peer-reviewed is akin to a blog, as anybody can post it online. Their use is generally discouraged"

And that:

"Many Wikipedia articles rely on scholarly material. When available, academic and peer-reviewed publications, scholarly monographs, and textbooks are usually the most reliable sources"

Димитрий Улянов Иванов (talk) 20:06, 5 December 2024 (UTC)

I think you are once again starting to argue against a point that has not been made. I'm sure that everyone here agrees that "Non-peer-reviewed sources should not replace/overturn reputable, peer-reviewed sources when they are available, particularly with the implicated topics. If pertinent scientific sources are not available, then non-peer-reviewed sources may be acceptable." I don't see that anyone has proposed to not follow this general guideline.--TempusTacet (talk) 20:12, 5 December 2024 (UTC)

Tempus, I literally have cited, twice in separate comments, throughout this discussion, how the individual I was replying to has stated:

"We should certainly be looking outside of the scientific literature", who then went on to list opinion and advocacy based non-scientific sources, in the context of highly scientifically implicated topics. They then also stated "and bear that in mind when prioritising things for inclusion".

My reply is therefore the antithesis of a strawman.

On the contrary, I find your replies in this talk page increasingly concerning because you have shown to repeatedly use false accusation of strawmen as a deflection. This is not an isolated incident by any means. Димитрий Улянов Иванов (talk) 20:22, 5 December 2024 (UTC)

I kindly ask you to stop implying that I'm not sincere or am trying to manipulate the discussion. I will quote myself here, taking what I just said above: You are grossly misrepresenting Oolong's statement. Oolong wrote: "We should certainly be looking outside of the scientific literature as such to help assess what autistic people, family members and relevant professionals see as important, and bear that in mind when prioritising things for inclusion: I would suggest that a decent place to start would be studies looking at community priorities for research, ..."

In no way does this suggest that Oolong proposes that in a situation where we have peer-reviewed studies or consensus guidelines stating something and we can also find another source that contradicts it, we should dismiss the scientific sources.

You can also see that, with the exception of the BPS article and Autistica (hardly a fringe group), everything that follows are in fact peer-reviewed papers published in mainstream journals.--TempusTacet (talk) 20:27, 5 December 2024 (UTC)

Please see my reply: Talk:Autism#c-Димитрий Улянов Иванов-20241205205000-TempusTacet-20241205202400

You have, however, falsely and persistently accused people of strawmen fallacies elsewhere in the article. For example: Talk:Autism#c-Димитрий Улянов Иванов-20241203000600-TempusTacet-20241202234800. Димитрий Улянов Иванов (talk) 20:56, 5 December 2024 (UTC)

Please do not start this discussion again. I will not engage with you further regarding that topic as long as you insist that you know what I'm arguing for or not, but I don't.--TempusTacet (talk) 21:01, 5 December 2024 (UTC)

This is a good summary of the discussion. I agree with Wikipedia:Scientific_consensus's essay interpretation of Wikipedia policies, and I don't think it's in conflict with Oolong's original suggestion of, say, highlighting comorbidities of autism and EDS (a biomedical claim which can be supported with scientific-only sources). Nor does that essay conflict with, say, Wikipedia:Biomedical_information categorizing "Social stigma against a condition or treatment, information about disease awareness campaigns or advocacy groups, public perception, public funding for research or treatment, etc" as non-biomedical information and thus allowing non-scientific sources.

In fact, I would argue there is agreement between scientific sources and non-scientific sources here! Of course, there is not universal and unanimous agreement (which should be called out in future edits), but for example (I'm quoting Botha 2019 here):

"Lastly, there is little theoretical grounding for what is high-functioning versus low-functioning. For example, it is acknowledged that, as a field (Psychology), we have little idea as to what autism is, or what causes it (Evans, 2013), there are still many theories of autism which gain currency in different settings with different people, meaning it is culturally bound (Matson et al., 2017; Perepa, 2014)"

So using cultural-level sources would provide a more accurate depiction of what theories of autism gain currency in different settings, and therefore should be discussed. Patrickpowns (talk) 20:27, 5 December 2024 (UTC)

Thank you, I agree with that position.--TempusTacet (talk) 20:29, 5 December 2024 (UTC)

We should for sure consider cultural-level sources in societal contexts or other appropriate ones; I assume this is what you mean with "what theories of autism gain currency in different settings", basically theories that are gaining traction/popularity etc with the word "currency" there. I would, however, oppose edits based on such sources for establishing factual content like the existence of a symptom or associated feature. Apologies for the confusion and thanks for checking on this issue. Димитрий Улянов Иванов (talk) 21:05, 5 December 2024 (UTC)

I agree that "sources for establishing factual content like the existence of a symptom or associated feature" should at least be peer-reviewed & preferably reflect a broad consensus (in line with WP:MEDRS).--TempusTacet (talk) 21:09, 5 December 2024 (UTC)

Thank you for acknowledging that. I have compared this with how Oolong changed "deficits" to "difficulties" in the lede earlier, despite the symptom dimension being defined as a deficit in the ICD-11 and DSM-5, among many other peer-reviewed sources. This is because the underlying psychological ability is itself deficient, and not a difficulty. They did not substantiate this edit, and I suspect they made the change to appeal to public opinion, as they have suggested elsewhere and alluded to in the post here. It is a fact that it's deficient, so such an alteration was problematic.

I believe this is why I inadvertently misrepresented their comment, as I had their edit in mind while writing. Димитрий Улянов Иванов (talk) 21:22, 5 December 2024 (UTC)

Thank you for carefully reading what I wrote & engaging with my comments in this discussion. I suggest that we'll leave revisiting the language discussion for another day, and instead focus on what I believe was Oolong's original intention when opening this section, which is to discuss which topics are missing from the current entry & if/how they should be included.--TempusTacet (talk) 21:32, 5 December 2024 (UTC)

No problem, these sort of edits are certainly provocative of a range of opinions and can initiate quite a conversation online. Of course, only 1 of so many readers replies so they are not representative of all viewers but it’s good to get some feedback nonetheless. I will cease responding for now until time permits me but thank you for the opportunity to discuss these issues. Димитрий Улянов Иванов (talk) 21:48, 5 December 2024 (UTC)

I referred to the Double empathy problem when I made that edit: it was not unsubstantiated. Read that entry, check out the peer-reviewed literature on this.

The evidence of recent years means that any source that works on the basis that autistic people have deficient social interaction and communication outdated. The hypothesis has effectively been disproven by a series of demonstrations that autistic people communicate perfectly effectively with each other; and that neurotypicals lack empathy for autistic people at least as much as vice versa.

Regardless, an edit that you disagreed with is no excuse for coming in on a different topic with guns blazing, wrongly accusing me of misrepresentation.

I would like us to get on with the project of addressing major holes in this article.

If you want to argue about what the 'double empathy problem' results do and don't mean, I encourage you to take it up under another new heading. Oolong (talk) 21:44, 5 December 2024 (UTC)

Glad to hear there's some consensus on this :)

sounds like there will definitely be future discussion about where to draw the line between the factual existence of a symptom or associated feature vs., say, an emic or etic (autistic/allistic, in this case) perspective on "Society and culture" or "Medical ethics" (just some examples from WP:MEDRS).

Just to plan out my future edits, I'll try to

- stick to scientific sources for biomedical information

- prefer scientific sources but also sometimes use non-scientific sources (ideally both) for non-biomedical information

For example, I might cite a study's interview transcripts if it's pertinent to a non-biomedical claim, and maybe also a reliable non-scientific source.

Any other thoughts? Patrickpowns (talk) 21:26, 5 December 2024 (UTC)

I think that's a good summary. Thank you.--TempusTacet (talk) 21:37, 5 December 2024 (UTC)

Just this. Thank you! Oolong (talk) 21:46, 5 December 2024 (UTC)

Too little focus on anthropology and social dynamics; too intense focus on medical genetics.

The current version of the article is obsessed with medical model, focusing on the genes or neuroscience, with a very little (probably zero) understanding of lived experience of Autistic people and Autistic communities. To be honest, Autism is more of a "situation" due to contemporary human social or civilization structure where the cognitive minorities get misunderstood and drastically misfit. In order to understand Autism, we need to see it through Anthropology, and the human evolution , how herd behavior had selective advantage but that is not the only way of being. Not through some sort of pathology or epidemiology. Definitely Autism has objective cause like genotype or epigenetics, but that does not mean the "problem" lies there. The problem lies in broader social dynamics which is totally unaddressed in this article. RIT RAJARSHI (talk) 05:29, 12 December 2024 (UTC)

ASD impairs people’s ability to do things that they enjoy, to take care of themselves and their daily needs, in their relationships with family and friends, in ways that have absolutely nothing to do with society. Reducing autism to a mere cultural mismatch is highly trivialising and erases the harms and experience that directly result from people’s impairments.

I won’t reprint the totality of the references again, but a global and unanimous scientific consensus on the framing of autism has been established in a prior talk page section (this may have been archived). Димитрий Улянов Иванов (talk) 08:01, 12 December 2024 (UTC)

Please stop claiming a 'global and unanimous scientific consensus', or define your terms very carefully. It is trivially obvious that 'unanimous' is wrong - any serious dissent from any competent scientists immediately refutes that, and you have been pointed towards plenty. I find it hard to imagine that you seriously believe otherwise.

And again, I argue that the application of the idea of 'scientific consensus' to a question of terminology or framing relies on an idiosyncratic reading of what 'scientific consensus' means. Scientific consensus refers to the consensus of scientists about a scientific question - a hypothesis that has been thoroughly examined and stood up to all challenges. The question of how to talk about something like autism is at best obliquely a scientific one, and you have not demonstrated that it has ever been subjected to the kind of experiment hypothesis-testing that would render the term 'scientific consensus' meaningful.

Also, as several editors have now separately pointed out, the 'consensus' on this framing is only anywhere close to universal in one or two of the various fields studying autism.

Claiming that a 'unanimous scientific consensus' has been established on this talk page is entirely wrong. When you have been challenged, you have responded by simply restating your original claims and accusing others of bad faith. At this point, I feel compelled to throw that accusation back at you. Oolong (talk) 16:04, 13 December 2024 (UTC)

@Димитрий Улянов Иванов and Димитрий Улянов Иванов:

• (1) I am too tired with references either, but there are references in both side. There are much less number of papers from lived experience because Autistics are a cognitive minority, and their internal experiences are not well understood.
• (2) Regarding "cultural": To make it clear, me either do not think Autism is "entirely cultural", but there are neurological and psychological differences that lead to mismatch in cultural norms, communication, expectations, etc. The debate is around whether should we pathologize this human variation or should accept is as a natural biodiversity.
• (3) Many Autistics are deeply aware that there are what we called "co-occurring" conditions that limits us. But Autism itself (with Greek root Autos=self), or technically a different neural processing, is all what makes the perceptual reality of that person. It may not be possible for a non-Autistic person to ever know or understand the Autistic experiences. Autism itself doesn't kill a person, and it is neither merely a state of mind, but it is an entirely different neural processing style or operating system.
• (4) To externally impose what is a "good life" and what is not; is an epistemic violence (Chapman, Robert; Carel, Havi (December 2022). "Neurodiversity, epistemic injustice, and the good human life". Journal of Social Philosophy. 53 (4): 614–631. doi:10.1111/josp.12456). This leads to a necessity for Nothing about us without us.
• (5) Psychology is NOT exactly a science in the same sense of physics or chemistry. Because it deals with non-communicable, deeply personal experiences, comparable to qualia, which aren't exactly falsifiable. Although behaviourism gives psychology a "measurable" look, or prescribes methods which has controversy because the internal working of mind is overlooked, psychology should still be considered within scope of philosophy than proper hard science. Neuroscience or neuroimaging also can't say about other people's qualia or perceptual experiences. Here is a nice article on Autism and Scientism: https://www.middletownautism.com/files/shares/MCA_Research_Journal_1.pdf (Autism and Scientism

Why science is not always the best way to learn about autism).

• (6) Like there is a "scientific consensus", there do exist an "Autistic consensus". There are also exception and individual variation in that Autistic consensus. The Autistic consensus is based on daily experiences.
• (7) Regarding the statement "ASD impairs people’s ability to do things that they enjoy, to take care of themselves and their daily needs, in their relationships with family and friends, in ways that have absolutely nothing to do with society" it seems Autism and co-occurring conditions have been confused. Generally Autistic people may not like what a non-Autistic people enjoy. For example, "samefooding" or "infodumping".
• (8) Wikipedia is an encyclopedia, and Autism is an important topic for public information, and this is an influencial public platform with a broad audience. So selectively prioritize the medical model that Autistic consensus doesn't agree with; harms and marginalizes Autistic people.

RIT RAJARSHI (talk) 13:52, 12 December 2024 (UTC)

ABA is, at least, controversial

A large body of lived experience and some research suggests ABA or its variants is linked to traumatic experiences. It worth mentioning that there are concerns surrounding ABA. RIT RAJARSHI (talk) 05:38, 12 December 2024 (UTC)

Do you have sources? DonIago (talk) 05:55, 12 December 2024 (UTC)

I'm not going to go looking (mostly because I don't have the energy to do that kind of undertaking right now) but off the top of my head I think there are at least a few (especially in more recent years) reliable studies and sources, so the sources may exist even though the person who opened this section didn't provide any. (I'd be more specific about one of the studies I'm thinking of, too, as an example, except I'm blanking on enough info to be able to find it easily, in part because of the energy thing.) - Purplewowies (talk) 06:52, 12 December 2024 (UTC)

Please keep in mind that such studies often report a correlation, and thus we cannot imply cause. It’s equally plausible - if not subsequently established in controlled research - that, for instance, these adverse outcomes are a marker of ASD severity increasing the likelihood of using the intervention.

The developers of evidence-based national and international guidelines (some referenced in this article) endorse the use of ABA.

I’d also like to note that state of the art tools to rate the certainty of evidence, such as GRADE used by the UK National Institute for Health & Care Excellence, set idiosyncratic and the highest standards for reporting. Indeed, using GRADE, NICE failed to rate ABA as exhibiting high quality evidence for its efficacy, but so it has for most treatments commonly used in clinical practice such as antihypertensives for cardiac complications or methylphenidate for ADHD, yet these treatments are still recommended as first-line interventions. Димитрий Улянов Иванов (talk) 07:49, 12 December 2024 (UTC)

No, that is not a plausible interpretation of the available information at all.

There are several high-quality references in my essay that I have pointed you towards a number of times now. Oolong (talk) 18:07, 12 December 2024 (UTC)

In such a case that the source didn't imply causation, of course we wouldn't imply causation, because that'd be WP:SYNTH WP:OR. Same as we wouldn't start making assumptions about other "equally plausible" connections that a given source didn't say itself. - Purplewowies (talk) 02:19, 13 December 2024 (UTC)

(Technically, that would be non-SYNTH OR. SYNTH requires combining two or more sources to say something that's in no source. The non-SYNTH parts of OR are about using one source to say something that's in no source.) WhatamIdoing (talk) 20:00, 13 December 2024 (UTC)

(Ah, darn, you're right. I think I just had synth on the brain when writing that. Corrected!) - Purplewowies (talk) 05:28, 15 December 2024 (UTC)

Editors removed "Unbalanced" tag, which is wrong

It is clear to me that there are more than one way to look at Autism, but the editors chosen only one. This article is heavily leaning towards medical model. Therefore I inserted the unbalanced tag. But the article still remains unbalanced and misleading.

RIT RAJARSHI (talk) 12:46, 13 December 2024 (UTC)

Simple reasoning for why pathologising Autism is unfair

You may think the situation in this way. Everyone is using video calls using a smartphone, and you are using a walkie talkie. Now yes you do face communication barrier, but more information on how a video display works, would not help you to translate the images into alt text.

Similarly, more and more information on brain circuitry or genes does not help dissolve the barrier.

But learning about lived social experiences do help.

Another example; think you are a trained classical musician who can detect microtonal differences instantly. Now you have been thrown into a factory where people breaking down metal sheets with hammer and you feel like damn blown. Now everyone points out at you as the problematic one. Or think you are a more sensitive clinical mercury thermometer and other people are thermometers used in a water bath or hot air oven. And you are pointed as the 'defective' one.

It takes 2 to make a communication. We spend hours to teach neurotypical communication to Autistics. Why not spend that time teaching the neurotypical society about Autistic communication? RIT RAJARSHI (talk) 12:48, 13 December 2024 (UTC)

Update: The social mistreatment isn't always deliberate. It is due to not understanding each others' cognitive process. RIT RAJARSHI (talk) 13:16, 13 December 2024 (UTC)

Autism is a spectrum and it looks like ICD or DSM are gatekeepers. Definition of Autism and ASD varied through ages

Regarding "A formal diagnosis of ASD according to either the DSM-5 or the ICD-11 criteria requires not merely the presence of ASD symptoms, but symptoms that cause significant impairment in multiple domains of functioning, in addition to being atypical or excessive for the individual's age and sociocultural context"

No, that is "Co-occurring conditions".

Definition of Autism changed through years. Bleuler, Asperger, Sukhareva, Kanner, Lorna Wing, Gillberg criteria, and different editions of ICD and DSM.

By reading the article it seems to me that:

• Autism= Not Autism (Keep suffering in silence) (as if)

• Autism + Co-occuring impairments= Autism (as if)

• Co-occurring impairments = Autism (as if)

Also it is vague to me that what they mean by "significant". How much you try to define a official "cut off line", the broad spectrum will keep existing, and will keep suffering in silence due to societal mistreatment.

RIT RAJARSHI (talk) 13:05, 13 December 2024 (UTC)

Trying to gatekeep a natural truth through conventions and proceedings is as weird as the Indiana pi bill RIT RAJARSHI (talk) 13:14, 13 December 2024 (UTC)

Autism as a Neurodevelopmental Disorder - Response to RIT RAJARSHI et al.

Recently across several posts, @RIT RAJARSHI and @Autistic scorpio have expressed concerns about the article referring to autism as a neurodevelopmental disorder. RAJARSHI also applied a template that implies substantial undue weight is present in the article. For organisational purposes, because replies are fragmented across the talk page and overlapping with other discussions, I feel it's necessary to divert this dialogue to a dedicated section.

We have previously made our position clear extensively in aforementioned posts and therefore I will only highlight some crucial points here.

Regrettably, RAJARSHI et al. ignore the importance of reflecting the global scientific consensus per Wikipedia's policies and guidelines, which mandate reliance on peer-reviewed sources when available, and that scientists determine what qualifies as scientific or pseudoscientific (see Wikipedia:scientific_consensus and Wikipedia:reliable_sources).

Around the world, the developers of scientifically-based guidelines, standardised diagnostic criteria, consensus statements, systematic reviews, meta-analyses etc. unanimously conclude that autism is a neurodevelopmental disorder (for references, please see Talk:Autism#c-Димитрий Улянов Иванов-20241126131200-Oolong-20241126104700). Unfortunately, these references are not addressed in the replies by RAJARSHI et al.

Contrary to RAJARSHI, no significant debate exists in the scientific community of whether ASD is either a pathology or simply as a manifestation of biological diversity. The prevailing evidence reconciles neurodiversity, with the classification of a neurodevelopmental disorder, when it reaches an extreme degree that begins to significantly impair an individual's functioning. In short, these two concepts are not mutually exclusive.

Applying the assertion that a categorisation cannot be imposed on underlying spectrums of diversity as the standard for defining disorders would rule out all currently known mental and developmental disorders, including schizophrenia, bipolar disorder, ADHD, Tourette’s syndrome, intellectual disability, to name just a few, and many medical disorders could not be considered as valid. None of these disorders could withstand comparison to such a criteria for concluding a disorder to be valid. Such unscientific challenges to the validity of ASD are not just misguided but harmful because they can serve to misinform policymakers and the public and thereby restrict, reduce, or eliminate access to services for them.

On the topic of due weight, in my view, the lede neutrally represents both the scientific and neurodiversity movement perspective on the issue of the appropriateness of terms. I have not seen evidence to suggest there is significant undue weight in the article, nor enough to necessitate placing a tag.

Lastly, I'd like to voice my disagreement on the idea that viewing conditions, like ASD or ADHD, as disorders is unanimously harmful to people with lived experience. Many, in fact, do not feel that this sufficiently or accurately represents their needs. They feel excluded by much of its rhetoric. They don't accept how it frames mental disorders as being the same kind of harmless or positive diversity as race, sex or gender. Race, sex and gender are not disabling or impairing, while mentla disorders often inherently are. All are equally deserving of rights, but they find the way that the politicisation of neurodevelopmental disorders, often from self-diagnosed or unimpaired advocates, erases the experiences of people who are impaired directly by their symptoms, harmful. There is a widespread sentiment in the movement that any treatment is tantamount to abuse, overlapping fully with the anti-psychiatry movement. As people who greatly benefit from treatment such as therapy or medication, they find this absolutely despicable and unacceptable.

In conclusion, rather than removing the scientifically-established framing of autism, in my view, there are much more important priorities. I think we should instead focus on how autism should be framed in different contexts. For example, a section based on society's perspective of the disorder would not have to rely on peer-reviewed sources (from my understanding of WP's policies), without this applying to the article in general. Димитрий Улянов Иванов (talk) 13:24, 13 December 2024 (UTC)

Stop calling me "et al.", and stop name calling. You could have been written the message is for all the critics. What I wrote, I wrote individually. The article and its language and framing was too triggering for me. There exists an Autistic consensus and it is not okey to deny or disrespect that RIT RAJARSHI (talk) 13:40, 13 December 2024 (UTC)

Et al is not ‘name calling’, it’s an academic and short way of referring to ‘and others’, hence why I used it. It’s fine and understandable if you personally disagree with the language used, but you haven’t actually addressed the substance of our points at all, which are intended to prevent inaccurate edits/editorialisation. If you would like to propose article changes, please don’t just reiterate arguments I addressed in my response above. Димитрий Улянов Иванов (talk) 14:18, 13 December 2024 (UTC)

Thank you for explaining why you used 'et al'. I know et al means colleagues but I was expressing individual opinion. I do suffer from impairments and deficits like situational mutism, working memory problems, high sensitivities, executive function issues etc. and yes I do think some treatment like mind training helps, but forced eye contact or teaching minutes of social norms create lot of pain. And it just helps in day-to-day survival if society is more accommodating. Also, a difference in body language or interpretation of language works as a disadvantage in interview tables and creates hostility in workplaces. So what is wrong if neurotypicals too are taught about lack of eye contact or different style of responding is not necessarily associate with perceived meaning? I do not held a radically antipsychiatry beliefs, I require to take psychotherapy as well as psychiatric treatment on routine basis, but that does not mean every treatment modality is helpful, or the professionals have nothing to learn from the patient party. If society was designed differently, maybe the struggle could be lesser. RIT RAJARSHI (talk) 14:40, 13 December 2024 (UTC)

No problem! Thanks for your reply, and I apologise that I may have implied you may hold anti-psychiatry beliefs. This has not been my intention in writing this post here, it has just come partly as a result of dealign with heated and ideological promotions occurring in this talk page. Reading it now, I wouldn't have come from the perspective and tone I did.

I hope we can agree that while there is no doubt society is the cause of some of autistic people's impairments, such as - as you point out - neurotypical people being unaware of, or discriminating against, people's difficulties with maintaining eye contact; in this case, societal accommodations would be helpful to varying degrees, as they are in many other contexts; but that society is by far not the sole cause of people's disability or impairment with autism.

A subset of advocates over the past decade or so related to the neurodiversity movement wish to claim that the underlying brain differences simply reflect a spectrum of brain design and functioning, which is true in part. But when that degree of "diversity" reaches a point that it significantly and pervasively impairs functioning in major life domains, puts one at greater risk of injury, morbidity and even early mortality, then it is not just another way of being so to speak but starts representing an impairing deficiency or deviation which are the criteria we use to identify a disorder. If we simply disqualify the validity of neurodevelopmental disorders, then no treatment would be provided to those in need of it, which seems cruel to me or at least ill advised when people are experiencing adverse consequences as a direct result of their diversity and thus are reporting suffering. Димитрий Улянов Иванов (talk) 20:08, 13 December 2024 (UTC)

Димитрий Улянов Иванов, why are you sometimes referring to yourself in the plural (e.g., "We have previously made our position clear", "you haven’t actually addressed the substance of our points at all"). Re: "I have not seen evidence to suggest there is significant undue weight in the article," would you agree that right now, the majority of the article focuses on medical aspects, and that that is not the only relevant perspective? For example, what would you say is the appropriate weighting of medical views vs. social scientific views? FactOrOpinion (talk) 19:56, 13 December 2024 (UTC)

Hi, I'd like to preface that I regret writing the response in such an accusatory way, it wasn't really my intention. My apologies. There has been extensive discussions and edit summaries clarifying the aforementioned matters, from numerous people, which I intended to refer to but re-reading it now I can see how it's ambiguous and can be interpreted differently.

Regarding undue weight, the article does not focus overly on medicine - at least not on the issues I was mentioning. The scientific references I have provided that recognise autism as a neurodevelopmental disorder arise from and cover a variety of fields and perspectives about autism, not merely medicine. Some do cover social implications of autism (e.g. ESCAP's international guidelines). Димитрий Улянов Иванов (talk) 20:44, 13 December 2024 (UTC)

Re: "the article does not focus overly on medicine - at least not on the issues I was mentioning," just clarifying that I wasn't asking about the issues you'd mentioned, but about the article as a whole. FactOrOpinion (talk) 22:26, 13 December 2024 (UTC)

@Димитрий Улянов Иванов Stop calling me "et al.", and stop name calling. You could have been written the message is for all the critics. What I wrote, I wrote individually. The article and its language and framing was too triggering for me. There exists an Autistic consensus and it is not okey to deny or disrespect that RIT RAJARSHI (talk) 13:43, 13 December 2024 (UTC)

Regarding your attempt to "divert this dialogue to a dedicated section", please see this xkcd comic.

Your claim that "no significant debate exists in the scientific community of whether ASD is either a pathology or simply as a manifestation of biological diversity" is, objectively, wildly inaccurate, and remains so however many times your repeat it. Numerous references already provided show this very clearly.

It's hard to know how else to explain that your references do not (and cannot) show what you keep claiming they show. You seem to be trying to declare the extensive debate that exists about this in scientific communities as somehow 'insignificant'? It... is very clearly not insignificant. Oolong (talk) 16:12, 13 December 2024 (UTC)

This shouldn't merit a response because unfortunately, you are, again, completely ignorance the citations I referenced in the very post you're replying to. In the link provided, I explicitly and exclusively quoted each citation, so it is not "[me] claiming they show" something. There, I also addressed the references you have raised and showed how most of them are irrelevant as they represent blog posts (not peer-reviewed; considered unreliable by Wikipedia policies), or advocacy papers, which are refuted in the scientific literature, and would not overturn the consensus.

I would like to give you an example:

- "Vaccines are safe, a doctor said so on a talkshow!"

This is an appeal to authority.

- "Vaccines are safe, numerous peer-reviewed guidelines, consensus statements, systematic reviews and meta-analyses around the world concluded so!"

This is showing scientific consensus, in a way analogous to the aforementioned citations.

By the way, the reconciliation of the concepts of neurological diversity and neurodevelopmental disorder has been established for decades, such as as far back to the first International Consensus Statement on ADHD (Barkley et al., 2002).Димитрий Улянов Иванов (talk) 21:04, 13 December 2024 (UTC)

"showed how most of them are irrelevant as they represent blog posts (not peer-reviewed; considered unreliable by Wikipedia policies), or advocacy papers, which are refuted in the scientific literature"

this is simply completely untrue. Oolong (talk) 18:47, 14 December 2024 (UTC)

Barkley (2002) doesn' t even mention diversity, would you like to elaborate on how it established "the reconciliation of the concepts of neurological diversity and neurodevelopmental disorder"? Oolong (talk) 18:53, 14 December 2024 (UTC)

Димитрий Улянов Иванов, re: your claim that "I also addressed the references you [Oolong] have raised and showed how most of them are irrelevant as they represent blog posts (not peer-reviewed; considered unreliable by Wikipedia policies), or advocacy papers, which are refuted in the scientific literature, and would not overturn the consensus," would you mind linking to the comment of yours where you think you did this? Thanks. You're mistaken that all blog posts are considered unreliable. Blog posts are self-published; however, as WP:SPS notes, "Self-published expert sources may be considered reliable when produced by an established subject-matter expert, whose work in the relevant field has previously been published by reliable, independent publications." Your use of "most" indicates that you take some of the references to be relevant, and I'm curious which you put in that category. By my (admittedly incomplete) browsing, I see that some of the references, such as this one, are neither blog posts nor advocacy papers; are those among the ones you find relevant? Finally, it's not necessarily the case that advocacy papers are refuted by what you see as the scientific consensus; the issues addressed by the advocacy papers could instead be orthogonal to those addressed in what you see as scientific consensus, or it might be that they discuss consensus in the social sciences (I'm not sure whether you count social sciences as sciences and therefore relevant to the scientific consensus). FactOrOpinion (talk) 21:35, 14 December 2024 (UTC)

I'm still relatively new to wikipedia and getting my feet, so I accidentally put some very relevant comments in what I guess is an earlier section of discussion https://en.wikipedia.org/wiki/Talk:Autism#c-%C3%93.Dubhuir.of.Vulcan-20241213211800-%D0%94%D0%B8%D0%BC%D0%B8%D1%82%D1%80%D0%B8%D0%B9_%D0%A3%D0%BB%D1%8F%D0%BD%D0%BE%D0%B2_%D0%98%D0%B2%D0%B0%D0%BD%D0%BE%D0%B2-20241202213200 (sorry about that), but there, I pointed out that the sources being appealed to by Димитрий Улянов Иванов are invariably clinical guidelines, which are either explicitly required to follow the norms of the larger clinical field outside autism, or at least under considerable pressure to do so. These clinical documents don't represent a scientific consensus and are inextricably intertwined with advocacy issues because the disorder framing is often needed to justify the provision of supports. To further emphasize this, building on my earlier arguments and sources, let me quote Catherine Lord, one of the DSM-5 working group members and the developer of the most widely used autism diagnostic instruments like ADOS: "This is not science" (https://www.youtube.com/watch?v=LX6rRWibX4E&t=142s), referring to the DSM-5 process. As Lord notes, the process is heavily affected by practical considerations and worries about harming the community by doing this or that or the other. She also calls the categories "bureaucratic decisions" (https://www.youtube.com/watch?v=LX6rRWibX4E&t=342s).

So, essentially, although Димитрий Улянов Иванов is maintaining that the sources cited by others in this talk are "advocacy" and not "science," surely given these considerations the same "advocacy" appellation can also be applied to Димитрий Улянов Иванов's currently preferred clinical guideline sources as well.

Now Lord does call autism a disorder (but this is a committee chosen to operate within this clinical framework and not necessarily representative of the field, and even then, her fellow committee member Happe's more neuro-affirming stance has already been cited by others on this talk page, and if you'll forgive a blatant self-citation I also co-authored a neurodiversity-aligned paper with another committee member Sally Rogers (https://doi.org/10.1159/000526416)). But of course dwelling on specific individuals doesn't give us a good sense of the dynamics of the field as a whole. Regarding the field as a whole, I also in my earlier comments pointed to a systematic review of language use in the entire autism peer-reviewed literature in 2018-2021 - a total of 2322 articles. So this is capturing the field as a whole in a way that none of the other specific sources being cited here can. It says the breakdown was 70% traditional medical, 30% neuro-affirming (https://doi.org/10.1089/aut.2023.0030). Also I noted the article found neuro-affirming language usage was increasing over time, so likely higher by now. So I called this pretty clear evidence of an unsettled and changing field, not of a stable and unambiguous pro-medical consensus.

So it's disappointing here certainly to see that the discussion has not changed at all since my comments, and that claims are still being made of a stable pro-medical consensus, without any additional justification. If those making these pro-medical consensus claims cannot provide clearer evidence from non-advocacy sources, surely this means that the autism page does indeed need to be modified to present these viewpoints as two conflicting perspectives, rather than presenting one of these perspectives as fact? Ó.Dubhuir.of.Vulcan (talk) 23:13, 14 December 2024 (UTC)

Ó.Dubhuir.of.Vulcan, thanks for pointing me to your earlier comments and for your addition here. I came to this talk page in response to this Teahouse thread. I had recently read an article in a different field — part of the abstract is "I show that long-time Wikipedia editors follow the settler colonial logic of elimination to omit Native histories from Wikipedia’s American history pages; block Native and allied editors from adding scholarship that centers Native experience; and ban Native and allied editors from the website so that settlers can lay claim to digital space" (an article with some flaws, but that I nonetheless appreciate) — and the Teahouse thread about this Autism article made me wonder if something analogous was happening here. I have zero expertise in the field of autism; still, I'm hoping that I can be helpful in small ways here. Re: your question, which resonates for me, you'll find some discussion of the last thread on this page.

BTW, given that you said that you're a new editor: Welcome! The Teahouse is a good place to ask WP questions. I not new, but I'm also not extremely experienced, and sometimes I browse Teahouse discussions to learn from answers to questions that others ask, and for the limited occasions when I know enough to help out myself. You might also be interested in WikiProject Autism. It says that it may be inactive, but I see recent discussion on the talk page, and you can add yourself to the members list if you want. FactOrOpinion (talk) 00:33, 15 December 2024 (UTC)

Thanks for your contributions! Yes, the parallels between the silencing of autistic people and other marginalised groups have been well documented; based on your comments here, you might appreciate my recent (long) essay on epistemic injustice and autism on Wikipedia.

(apologies if this looks like self-promotion, but I wrote the essay to help people to understand the issues on Wikipedia around this topic, and their parallels and implications in wider society...) Oolong (talk) 08:18, 15 December 2024 (UTC)

Thanks for the warm welcome and the helpful advice! Just added myself to the project - I'm not sure how much time I'll have for editing but I'll do what I can, and I could probably dig up references on request if that's helpful to you or others.

And yeah, there's definitely some folks who see parallels (as well as intersections) between the autistic experience and indigenous experiences. There's an article that actually spends a few pages discussing similarities in how autistic and indigenous people were portrayed as primitive/pathological/other/etc. by some scholars (https://doi.org/10.1089/aut.2021.0075) So yeah, who owns the legitimate knowledge definitely contentious in both cases. Ó.Dubhuir.of.Vulcan (talk) 10:25, 15 December 2024 (UTC)

@Димитрий Улянов Иванов @FactOrOpinion @Oolong @Ó.Dubhuir.of.Vulcan @RIT RAJARSHI I came through the following paragraph:

"Lastly, I'd like to voice my disagreement on the idea that viewing conditions, like ASD or ADHD, as disorders is unanimously harmful to people with lived experience. Many, in fact, do not feel that this sufficiently or accurately represents their needs. They feel excluded by much of its rhetoric. They don't accept how it frames mental disorders as being the same kind of harmless or positive diversity as race, sex or gender. Race, sex and gender are not disabling or impairing, while mentla disorders often inherently are. All are equally deserving of rights, but they find the way that the politicisation of neurodevelopmental disorders, often from self-diagnosed or unimpaired advocates, erases the experiences of people who are impaired directly by their symptoms, harmful. There is a widespread sentiment in the movement that any treatment is tantamount to abuse, overlapping fully with the anti-psychiatry movement. As people who greatly benefit from treatment such as therapy or medication, they find this absolutely despicable and unacceptable."

I have seldom read so much disrespectful stuff ever in life. It is not that the autistics capable of reading or writing are "unimpaired". The point is it is the SAME symptom that can be described as a biological impairment or a socio-cultural mismatch. How hard you try, "AUTISM" defined as a "Social disability and Communication disorder"; will ALLWAYS ALLWAYS involve at least 2 persons involved in that communication.

There are moderate or severe disabled autistic people who are learning to appreciate oneself, trying to shed off choking grip of continuous pathologisation, where as there are mild Autistics who are continuously dismissed about vast array of impairments. Sometimes this dismissal extend to severe and visibly intellectually disabled people. I am witness of such incidences in big hospitals. It is common for the clinicians to keep the patient in loop of irrelevant differential diagnoses like Schizophrenia, manic depression, OCD, hypochondriasis, paranoid-delusion, hysteria, or probably the entire DSM. In my country or culture, sensory meltdown is almost invariably diagnosed as manic episode of bipolar. Many many autistic people face problem in society, school, as well as the clinical system.

@Димитрий Улянов Иванов You need to understand that some people fall through the crack because the system, society, research, or policies know it wrongly. So many Autistic people have shared their views, and their life experiences, that, trying to deny that, or telling them political or unscientific, or trying to dismiss their diagnoses or impairments (Just because they do not define themselves as impaired), or changing diagnostic criteria "based on consensus" so that "fewer people can get diagnosis"... this is NOT how science works... this is how political parties work. And this is an extremely rude and disrespectful way to describe autistic people. 2409:40E0:102E:C01E:8000:0:0:0 (talk) 04:04, 17 December 2024 (UTC)

@Димитрий Улянов Иванов How would you feel if I describe you as a person who is stubborn behavioural disorder where you do not try to understand or feel other people's pain, so you are pathologically being selfish and supremacist, that need to be extinguished using behavioral trials?

I want you to know, that proponents of neurodiversity model are not causing the controversy. There is a genuine controversy and genuine disagreements from actual autistic and other disabled people... which resulted into a 'name' which is neurodiversity model. There are many autistics unable to access education or able to publish a research paper. Still, so many people has expressed their genuine concerns through blogs, youtube, social media discussion, peer groups, etc. that if the premium research does not mention this WIDESPREAD disagreement, then it is a serious failure within research. 2409:40E0:102E:C01E:8000:0:0:0 (talk) 04:30, 17 December 2024 (UTC)

I think multiple miscommunication from various side (including me) and quit the topic . I apologise for any miscommunication

I think multiple miscommunication from various side (including me) and quit the topic. I ask for forgiveness regarding my lack of response inhibition. I was triggered and went impulsive. I didn't mean to hurt anybody RIT RAJARSHI (talk) 15:36, 13 December 2024 (UTC)

RIT RAJARSHI, I came to take a look after seeing your Teahouse comment. I've only skimmed this Talk page, but I don't see any comments from you hurting anyone. That said, whether you choose to stay is up to you. If you choose to reengage, my suggestion is that you (and others who think that the article is unbalanced) start by gathering reliable sources from non-medical sources, both social science research (e.g., in fields like anthropology and sociology) and relevant non-research (e.g., personal commentary). For example, I just did a quick search, and this [4] book might be a good source, as might this book chapter (though I haven't read either and can't be sure). Temple Grandin's writings also come to mind. Put differently, it's not sufficient to want your perspective better represented in the article; you need reliable sources that support a more balanced article. I don't have time to look for more sources right now, and I don't have any expertise in this field, but I'll look for some other possible sources later. FactOrOpinion (talk) 18:31, 13 December 2024 (UTC)

RIT RAJARSHI, I want to apologize, as I fear that my previous response came across as condescending, when my intent was to be helpful. I see that a number of RSs have already been introduced into the discussion that are consistent with your perspective, and I probably shouldn't have said anything without first reading more of the exchanges. FactOrOpinion (talk) 19:31, 14 December 2024 (UTC)

I also don’t believe you’ve written anything harmful at all. This seems to be more of a miscommunication. I found your initial reply to me thoughtful and informative, even though I disagree with certain aspects. After re-reading the dialogue I realise my response came across more accusatory than I intended, and for that, I apologise. My tone was shaped by the frustration of repeatedly having to address others misrepresenting or ignoring key points.Димитрий Улянов Иванов (talk) 20:31, 13 December 2024 (UTC)

Hello @Димитрий Улянов Иванов , thanks for your response, and although I decided to quit this matter for now, I decided to clear up few miscommunication in response.

• In "strict sense", the "scientific" community (Genetics, molecular biology, biochemistry etc. that works on externally observed and falsifiable data, often from a reductionist approach) usually do present the view you hold. But in the "academic community" which is not necessarily "scientific" per se... that work with Qualia, lived experience , and other subjective aspects of philosophy and humanities; that including social science or social studies, philosophy, ethics, medical ethics, some specializations within psychology, etc. some serious disagreements indeed exists. I wish I could share my reference list, but forgive, I am too exhausted and burnout.
• Personally, it seems to me, that the "Global, unanimous scientific consensus", serves as a self fulfilling prophecy, and like the "growing cycle of inaccessibility". Since anything that doesn't go with the views of "Global, unanimous scientific consensus", may be perceived as fringe or too subjective, and therefore may face a negative bias in the peer review. I am aware that anecdotal evidence is not usually acceptable, but I know incidences where correspondence about criticisms of suggestion on ABA methods were not published, or rejected upon peer review process. It is difficult to prove since all private communications between all the journals and their authors are not accessible.
• Regarding politicization of our bodies and minds (1) : Who gets to speak and who gets to decide. The ultimate goal is wellbeing and flourishment of Autistic population. If your viewpoint is more beneficial for Autistics then I am ready to get defeated. But there is problem regarding how we "define" what is a good life, and who gets to define that. Regarding Nothing about us without us, a person need to be Identified as Autistic first to have the voice. But the article says "Before the DSM-5 (2013) and ICD-11 (2022) diagnostic manuals were adopted, ASD was found under the diagnostic category pervasive developmental disorder. The previous system relied on a set of closely related and overlapping diagnoses such as Asperger syndrome and the syndrome formerly known as Kanner syndrome. This created unclear boundaries between the terms, so for the DSM-5 and ICD-11, a spectrum approach was taken. The new system is also more restrictive, meaning fewer people qualify for diagnosis." Now it needs to be clarified who would 'qualify' for being identified as Autistic. If possible, Provide specific examples. Would Dr. Temple Grandin retain her diagnosis? Would Jaquiline Den Houting retain her Autistic status? Would Greta Thunberg retain her Autistic status in new system? What would be the status for Black, South-Asian etc. population where there is too little awareness on so called 'Asperger' or so called 'high functioning Autism'? If they do not 'Qualify'; then how the people of their profile can be accommodated? It still looks like the "cut off point" is fluctuating, and probably the cut off point has no real existence. There will exist people with less typical symptoms but continue to mismatch/ suffer daily survival. What would be their diagnoses? Where would their voice go? There are people who are more severely impaired in medical model standards, but continued to tell about "disablement by society" than "being impaired by own bodies", Stella Young for example. Would you still think they do not deserve diagnosis/ support/ care/ voice/ representation (any) because they claim to be not impaired by their bodies?
• Regarding politicization of our bodies and minds (2) : Although there are some little academic literature regarding harmful aspect of ABA therapy or its derivatives; there are plenty of lived experiences expressed in form of blogs, art, interviews, etc. Neuroclastic and ASAN has several articles on that. Chemical restraint , including misuse or overuse of antipsychotics has been another concern in concerned communities. The problem of disqualifying more "high functional" people is that, the more "low functional people" cannot often express their opinion in conventional neurotypical standard language. Hari Srinivasan, a mostly nonspeaking Autistic, with a lot of co-occurring impairment and dynamic disabilities, clinically diagnosed as severe or low functioning; who was a faculty at Barkeley and currently at a PhD programme in Vanderbilt University, wrote in an opinion in Times magazine that "I was diagnosed with autism and ADHD at age 3, and for the amount of “evidence-based therapy for autism” that has consumed my entire childhood, I should have been able to navigate it many times over by now. Why was I not benefiting from the vast amount of research that is being done in the name of understanding autism better? After all, autism has been an official diagnosis since 1980". He also expressed that "Of course, as a child you don’t have the power to challenge the “expert,” and you are left with a feeling of cognitive dissonance and mismatch that this is not quite right. ". and that "Yet, willy-nilly, existing autism research findings, and the resultant therapies and educational strategies, have been applied across the board to all autistics. Unfortunately, a lack of success in therapies not suited for you in the first place, leads to negative downstream impacts such as being placed in low expectations classrooms, the closure of opportunities, and less than positive lifetime outcomes. I find that despite all the careers, promotions, and profits being made by thousands of autism-experts, the state of autism interventions right now is one hot mess. In reality, there still are no real “experts” in autism because there is no one-size fits all model." Note that "wellbeing" in neurotypical standard, and actual wellbeing in Autistic population may look different. But if we keep enforcing the "Global, unanimous scientific consensus" to people who cannot speak, and we systematically exclude people who can speak about the harm, we keep the injustice unnoticed and continued.
• I hope these issues to be addressed in Wikipedia's subject matter academically. I did not mean to personally criticize anybody. RIT RAJARSHI (talk) 06:11, 14 December 2024 (UTC)

@Димитрий Улянов Иванов These are all what I wanted to convey academically, with respect. RIT RAJARSHI (talk) 06:16, 14 December 2024 (UTC)

@FactOrOpinion @Oolong all other editors you may include or mention these arguments in the dispute resolution procedure. Is there a way to keep it anonymous? or just refer me as a random visitor? RIT RAJARSHI (talk) 20:56, 20 December 2024 (UTC)

You are not required to participate in dispute resolution procedures, if you don't want to. WhatamIdoing (talk) 00:50, 21 December 2024 (UTC)

I would imagine that any volunteer mediators will look at whatever has been posted here, not exclusively named parties. There is no call for you to be formally involved. Oolong (talk) 11:02, 21 December 2024 (UTC)

Wanting a very particular source

Looking at the comments above and thinking back on some of what I've read, I am hearing two stories about autism that sound approximately like this:

• Medical model: Autism has some measurable risk factors cause some measurable biological changes to brain development and function. These changes to the brain result in a group of measurable, mostly behavioral symptoms. These changes and their results are largely an inseparable package: The same neurological changes that cause symptoms that are "desirable" (according to neurotypical people) are also the neurological changes that cause symptoms that are "undesirable" (again, according to neurotypical people). If you have a set of neurodevelopmental symptoms, then all of those symptoms are autism (unless demonstrated to be something else).
• Neurodiversity paradigm: Autism is an identity, and, as with all identities, people make choices about which things to attribute to the identity and which to believe are unrelated. Each symptom is attributed either to autism, to a non-autism-related co-morbidity, or to the consequences of society's disabling reaction to autism. Autism is primarily positive, though much of society's reaction and some of the comorbidities are very negative. If you have a set of neurodevelopmental symptoms, then you get to decide which parts are autism and which parts are not.

Does that sound approximately right? And if so, do we have some scholarly sources that describe the differences directly and explicitly? WhatamIdoing (talk) 21:30, 13 December 2024 (UTC)

Thanks for that analysis. Some refs:

• Nicolaidis, C. (2012). "What can physicians learn from the neurodiversity movement?" AMA Journal of Ethics.
• Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013). "Deficit, difference, or both? Autism and neurodiversity." Developmental Psychology.
• Milton, D. E. M. (2012). "On the ontological status of autism: The 'double empathy problem'." Disability & Society.
• Robertson, S. M. (2009). "Neurodiversity, quality of life, and autistic adults: Shifting research and professional focuses onto real-life challenges. " Disability Studies Quarterly.

Other approaches than the two you listed include:

• intersectionality
• biopsychosocial model
• critical disability studies

HTH, Mathglot (talk) 21:50, 13 December 2024 (UTC)

Thanks. That has led me to https://www.tandfonline.com/doi/full/10.1080/02667363.2019.1571481.

Part of the real-world dispute seems to be about who gets to define the word autism. If both of these stories are True™, but these stories are different, which one gets called autism and which one gets called not-exactly-autism? WhatamIdoing (talk) 07:02, 14 December 2024 (UTC)

Hi @WhatamIdoing, I'd say that's partly right. Your account of the medical model is reasonably solid, although for the most part the medical model simply doesn't have anything to say about 'symptoms that are "desirable"'.

What you've written about neurodiversity deserves a bit of breaking down and tweaking...

"Autism is an identity, and, as with all identities, people make choices about which things to attribute to the identity and which to believe are unrelated."

I find identity a bit of an odd place to start, here. I'm not sure what is or isn't being implied by the term: it's true that adherents of the neurodiversity approach are likely to say 'I am autistic' (i.e. to use identity-first language - IFL) but IFL isn't unheard of among people working in a solidly medical paradigm, either. It may be that you're hinting at the fact that the neurodiversity approach sees neurominorities as being oppressed/disadvantaged in ways somewhat analogous to the oppression of women, racial minorities, sexual minorities and so on? In this sense, group identity is important - being able to say not just 'I am autistic' but 'we are autistic' - or indeed, 'we are autistic and we're not going to stand for this any more.

But I'm not sure where you're going with the bit about choices about what to attribute to the identity. I guess... up to a point? But it's more like one thing can have many causes?

"Each symptom is attributed either to autism, to a non-autism-related co-morbidity, or to the consequences of society's disabling reaction to autism."

Crucially, in the neurodiversity approach, 'symptom' is almost certainly the wrong word for whatever you're thinking about. It implies several things that don't really stand up to examination: that autism is a disease; that the things being noted as 'symptoms' are directly caused by autism; that these things are inherently or inevitably negative.

So you have to ask what is actually being referred to, and what causes might be contributing to it. Misunderstandings, for example, can look like a symptom; overwhelm can look like a symptom; sensory sensitivity can look like a symptom; passionate excitement can look like a symptom.

The ways that these things manifest can, again, have many causes. It's not like autistic people are disabled because of autism or society, and it's not only society's disabling reactions to autism that contribute to this disablement. The social model of disability is very tightly bound up with the neurodiversity paradigm and movement; it's really important to understand what it has to say about disability in order to make sense of neurodiversity.

"Autism is primarily positive, though much of society's reaction and some of the comorbidities are very negative.

No. Neurodiversity is primarily positive. It's good for humanity that there is great variation in how people experience and process the world. That doesn't imply that it's good on an individual level - it may not even make sense to try to assess that.

It happens that many autistic people are largely positive about their autism, and it is worth noting there is evidence that this contributes to their wellbeing, but it is perfectly possible to be unhappy about your own autism without thinking the world would be better if autistic people didn't exist. I discussed some of this in a piece called What Neurodiversity Isn't, if you're interested.

"If you have a set of neurodevelopmental symptoms, then you get to decide which parts are autism and which parts are not."

Not really, but it is generally held that neurodiversity suggests people can be experts on their own experiences, and should be listened to about them.

@Mathglot has provided some very helpful resources.

I would add this recent work on what people actually mean by neurodiversity, and Nick Walker's classic introduction:

• Dwyer, P. (2022) The Neurodiversity Approach(es): What Are They and What Do They Mean for Researchers?
• Dwyer et al (2024) Community views of neurodiversity, models of disability and autism intervention: Mixed methods reveal shared goals and key tensions
• Walker, N. (2014) Neurodiversity: Some Basic Terms & Definitions

For a broader set of references, a group of researchers has just recently produced this very helpful annotated introductory reading list for neurodiversity on eLife. Oolong (talk) 18:27, 14 December 2024 (UTC)

Thank you for your post, but I'd like to clarify these issues, as I don't think they have been represented precisely accurately. The global scientific consensus (1) stipulates that there is an underlying spectrum of neurological diversity in the population; and that when diversity in a specific trait or set of traits reaches an extreme degree that it pervasively and significantly impairs an individual's functioning in major life domains, and/or predisposes to morbidity, injury or even early mortality, it rises to the level of a disorder.

I'd also like to clarify (per the consensus) the difference between symptoms and impairments; these terms are often mistaken for each other/interchangeably used in the general public, and I even see this happening from time ot time by some of my colleagues in the field (personally!). Symptoms refers to the behavioural or cognitive expressions of the disorder (e.g. difficulties with reciprocal social communication, high or low levels of sensory sensitivity) while impairments refer to the adverse consequences (e.g. poor academic performance, self-sufficiency, and ability to make or maintain friends) that result from symptom expression. Additionally, some impairments arise from society's oppression rather than the symptoms themselves.

The above has been established empirically for neurodevelopmental disorders for decades, such as as far back to the first International Consensus Statement on ADHD (Barkley et al., 2002), which concluded:

"Various approaches have been used to establish whether a condition rises to the level of a valid medical or psychiatric disorder. A very useful one stipulates that there must be scientifically established evidence that those suffering the condition have a serious deficiency in or failure of a physical or psychological mechanism that is universal to humans. That is, all humans normally would be expected, regardless of culture, to have developed that mental ability.

And there must be equally incontrovertible scientific evidence that this serious deficiency leads to harm to the individual. Harm is established through evidence of increased mortality, morbidity, or impairment in the major life activities required of one’s developmental stage in life. Major life activities are those domains of functioning such as education, social relationships, family functioning, independence and self-sufficiency, and occupational functioning that all humans of that developmental level are expected to perform..."

Thus, the concepts of a disorder and neurological diversity are not mutually exclusive. Some people in the talk page claim who claim they are rely on links to blogposts or the opinions of advocacy groups, which are definitely not peer-reviewed sources that would belong here, and to that extent would not justify completely reframing autism. They also appear to be conflating “autistic individuals” with the “autism rights movement,” when many autistic individuals do not consider themselves autism rights movement advocates or have strong opinions on these matters, and many self-diagnosed people, and people without autism, fancy themselves members of the autism rights movement to generalise their opinions to the people diagnosed with the disorder.

If we apply their assertion that neurodiversity is strictly incompatible with the standard for defining disorders, it would rule out all currently known mental and developmental disorders, including schizophrenia, bipolar disorder, ADHD, Tourette’s syndrome, intellectual disability, to name just a few, and many medical disorders could not be considered as valid. None of these disorders could withstand comparison to such a criteria for concluding a disorder to be valid. This form of science-denial to the validity of disorders are not just misguided but harmful because they trivialise people's impairments as mere neurodiversity, and can serve to misinform the public and thereby restrict, reduce, or eliminate access to services for them.

Another issue is the idea that neurodevelopmental disorders (NDDs) are something people should self-identify with rather than be diagnostically determined. This is highly problematic; to be diagnosed with e.g. ADHD or autism, it is required by standardised criteria (ICD-11 and DSM-5) that it's also externally documented. This is not just to combat malingering, but because research has shown the vast majority of people substantially underreport their symptoms, especially in adulthood (e.g. Sibley et al., 2024). A diagnosis of their presence/absence is therefore only considered reliable when other sources (e.g. people, reports) around them can be referred to.

The notion that autism is only impairing because of the oppression from modern society and is therefore not a disorder is also incorrect. Autism impairs people's ability to do things that they enjoy, to take care of themselves and their daily needs, and in many, many other ways that have absolutely nothing to do with society. Reducing it to a mere cultural mismatch is highly trivialising and erases the harms and experiences that directly result from people’s cognitive impairments. Димитрий Улянов Иванов (talk) 20:34, 14 December 2024 (UTC)

@Ó.Dubhuir.of.Vulcan has demonstrated very clearly and levelly, with high-quality references, that the scientific consensus you keep claiming does not exist. They are at least the third person to have shown this, and at this point I am starting to think that you keep throwing this phrase in in order to troll us. Oolong (talk) 08:22, 15 December 2024 (UTC)

We were engaged in a discussion, so I kindly ask for a bit of patience so I can reply to the response byÓ.Dubhuir.of.Vulcan once time permits me. Having to manage multiple conversations on this talk page has been challenging, and it can be difficult to keep track of every thread. Your implication that I am deliberately ignoring his references is both unfair and unwarranted.

Contrary to your ad nauseum assertion, there is a well-documented global scientific consensus on this subject. When the references are presented (which even include several consensus statements!) you repeatedly dismiss them by accusing people of strawman fallacies to divert the subject, or by misrepresenting the intent of my citations. You have also claimed that I am "merely asserting" points that are, in fact, supported through explicit and direct quotations from peer-reviewed sources. Instead of engaging with the content substantively, you rely on blog posts or political movement opinions that are not valid, peer-reviewed citations as mandated by Wikipedia’s policies. Or you misrepresent the sources with the idea that they are exclusivelyl about medicine, even though their scope extends far beyond mere medicine as you falsely claim, often addressing a variety of fields and perspectives about autism.

This has been pointed out to you repeatedly by many editors across talk pages, such as the ABA for autism page. Unfortunately, you are persistent in this behaviour in each of your replies to me and others reiterating the same, thousand-times debunked narratives.

Your conduct is not only counterproductive but is actually what increasingly resembles troll-like behaviour. If your aim is to contribute meaningfully to this discussion, to which I highly doubt, then you need to reflect on the feedback provided and address the points raised with intellectual honesty. Димитрий Улянов Иванов (talk) 11:09, 15 December 2024 (UTC)

Димитрий Улянов Иванов, re: your claim that "you [Oolong] rely on blog posts or political movement opinions that are not valid, peer-reviewed citations as mandated by Wikipedia’s policies," (a) Oolong has cited a mix of materials, including peer-reviewed publications, and (b) I want to point out again that WP does not mandate the use of peer-reviewed work. WP:RS says

"When available, academic and peer-reviewed publications, scholarly monographs, and textbooks are usually the most reliable sources. However, some scholarly material may be outdated, in competition with alternative theories, controversial within the relevant field, or largely ignored by the mainstream academic discourse because of lack of citations. Try to cite current scholarly consensus when available, recognizing that this is often absent. Reliable non-academic sources may also be used in articles about scholarly issues, particularly material from high-quality mainstream publications. Deciding which sources are appropriate depends on context."

I also encourage people to assume good faith. FactOrOpinion (talk) 14:58, 15 December 2024 (UTC)

Regarding the aforementioned matter, Oolong has in fact been persistently relying on blog posts and the opinions of advocacy groups. One exception to that is a textbook, which was advocating for something that is not currently established and whose views are idiosyncratic. For evidence, please see the discussions that have taken place on this talk page.

As I have cited many times in this talk page, Wikipedia policies in fact mandate what I said and the one you cited is consistent with the following.

Wikipedia:Reliable Sources, which is an "an English Wikipedia content guideline... that editors should generally follow", concludes:

"Material such as an article, book, monograph, or research paper that has been vetted by the scholarly community is regarded as reliable, where the material has been published in reputable peer-reviewed sources"

Further on, they state:

"Research that has not been peer-reviewed is akin to a blog, as anybody can post it online. Their use is generally discouraged"

And that:

"Many Wikipedia articles rely on scholarly material. When available, academic and peer-reviewed publications, scholarly monographs, and textbooks are usually the most reliable sources"

Wikipedia:Scientific consensus concludes:

"It is important to note that in forming its consensus it is the members of a particular scientific discipline who determine what is scientific and what is questionable science or pseudoscience. Public opinion or promoters of what is considered pseudoscience by the scientific consensus hold no sway in that determination. (See Wikipedia policy and guidelines regarding Undue weight, extraordinary claims sourcing, verifiability, reliability, and dealing with fringe theories.)"

So yes, in select cases non-peer reviewed sources may be cited but primarily when scientific sources are unavailable. That is far from the case here.

On this specific issue, I assume bad faith from this user considering their prolific history of ignoring citations, falsely accusing people of strawman fallacies or being "trolls", equating guidelines to mere people's opinions, baselessly rejecting the scientific consensus and Wikipedia policies, among other issues, apparently in order to divert the discussion from the references and reiterate debunked narratives. This is not an isolated incident. I have noticed this has occurred in several talk sections, and other editors have had to deal with such issues in other talk pages by them on similar matters (e.g. on whether ABA for autism is some form of "torture").Димитрий Улянов Иванов (talk) 16:06, 15 December 2024 (UTC)

Again, you're just stating falsehoods about what I've done, and in the vaguest, most handwaving way.

I have cited a series of papers from peer-reviewed journals, as well as other authoritative sources.

You have just dismissed the mountain of evidence against your eccentric interpretations of statements from clinical bodies which you claim demonstrate a "unanimous scientific consensus", and every time I make an argument you have no answer to, you either ignore it entirely or make a statement that implies you're somehow taking the high road by refusing to address it.

Please do better than this if you want to hang onto a shred of credibility here. Oolong (talk) 17:48, 15 December 2024 (UTC)

Димитрий Улянов Иванов, I see Oolong referring to quite a number of sources that don't fall under the aegis of blog posts and advocacy groups, such as the citations in this comment, this comment, and this comment.

Wikipedia policies in fact mandate what I said. No, they don't. I just quoted WP:RS text that shows it is not a "mandate." The second sentence of your third quote is in fact the first sentence of what I already quoted, and it's notable that you're ignoring the rest of that paragraph. Your first quote is taken from the section Some types of sources, specifically, from the subsection on Scholarship. But scholarship is not the only kind of source that can be reliable. The issue of reliability always has to be assessed in relation to the WP text for which it serves as a source; for given WP content, it may not be possible to source it to scholarship, but that doesn't imply that the content is WP:UNDUE or that the source is unreliable. I don't see anyone suggesting that scholarship be omitted from the article, only saying that it's not the only type of source that's relevant; that even when focusing on scholarship, the scholarly sources you've cited aren't the only scholarly sources that are relevant; and that when one considers all of the relevant scholarship, there isn't the consensus you claim. Your second quote is solely about preprints; that is, "Their use is generally discouraged" refers only to the use of preprints. Your last quote is from an essay, not a policy, and so cannot possibly indicate a policy mandate.

So yes, in select cases non-peer reviewed sources may be cited but primarily when scientific sources are unavailable. That is far from the case here. Your first sentence suggests that all peer-reviewed sources are scientific, when many peer-reviewed sources exist outside of the sciences. For that matter, you still haven't clarified whether you consider social scientific research to be scientific, or whether you restrict the use of "scientific" to the natural sciences. Social scientific research is clearly relevant to this article. Also, it's not "select cases"; huge amounts of appropriate WP material cannot be sourced to peer-reviewed sources. When appropriate, content from first-person accounts and advocacy organizations can be included, though it needs in-text attribution. FactOrOpinion (talk) 18:02, 15 December 2024 (UTC)

Yes, I'm aware Oolong has occasionally cited textbooks or advocacy papers, which I acknowledged in the comment you are replying. They are peer-reviewed, but are advocating for something that is not currently established. As such, they cannot overturn autism as it's currently defined, nor the scientific consensus in general, and are refuted extensively by other peer-reviewed papers. From my understanding, these cannot be used to reframe the article to not refer to autism as a neurodevelopmental disorder. This is something I have addressed previously with references here, which I'd appreciate if it were addressed.

I am also unaware of people saying scholarship should be removed, but I am aware of people claiming scientifically-established facts should be removed without reference to scholarly articles and in contradiction to the scientific consensus. For example, here.

For the issue on the aforementioned policy, I apologise and concede that they do not say "mandate", as you point out. Nor do they really "mandate", but generally require, adherence from editors which perhaps is similar but not the exact same as mandate.

You are misrepresenting Wikipedia:reliable_sources because it does merely refer to the unreliability of preprints, as when they state non-peer reviewed sources are generally discouraged, they compare them to blogs to reach the same conclusion. As such, blogs are also generally discouraged due to their unreliability. Here is the quote again:

"Research that has not been peer-reviewed is akin to a blog, as anybody can post it online. Their use is generally discouraged" (Wikipedia:reliable_sources).

I never stated there are no other forms of reliable sources than those peer-reviewed. However, as Wikipedia policies state, the latter are usually considered the most reliable and thus supersede the former when they are available, which is why "Many Wikipedia articles rely on scholarly material". Here is the full quote again:

"Many Wikipedia articles rely on scholarly material. When available, academic and peer-reviewed publications, scholarly monographs, and textbooks are usually the most reliable sources".

While Wikipedia:scientific_consensus is not itself an authoritarian Wikipedia policy, it is a guideline for editors, and is also important, as it cites the pertinent policies in the conclusion I quoted that substantiate what is written. So it's not something I feel that one should readily dismiss.

I consider social, scientific research, scientific. I haven't implied otherwise? The issue is not that per se, it is people relying on other non peer-reviewed sources, or grossly mischaracterising peer-reviewed sources. Димитрий Улянов Иванов (talk) 18:41, 15 December 2024 (UTC)

• I interpreted "opinions of advocacy groups" as non-research, in part because your earlier comment was explicit that they "are not valid, peer reviewed citations." I disagree that "opinions" is an accurate way to characterize peer-reviewed research. Glad that you're now acknowledging that Oolong has cited several pieces of peer-reviewed research.
• I haven't read many of the comments on this Talk page (there are lots of comments!), but among the ones I've read, I haven't seen anyone arguing that the article not refer to autism as a neurodevelopmental disorder. Rather, I've seen people claiming that too much of the page approaches autism from a medical perspective, and that there needs to be more balance with a neurodiversity perspective. For example, TempusTacet said "I do agree that there is a 'genuine philosophical difference' between a medical model and a neurodiversity perspective. Both are limited & perhaps flawed in their own ways, and are incompatible. But I think it's not necessary to reconcile them. Both can and do exist, and a Wikipedia entry can describe them."
• This is something I have addressed previously with references here, which I'd appreciate if it were addressed. Your link was to your user page.
• Nor do they really "mandate", but generally require, adherence from editors which perhaps is similar but not the exact same as mandate. But they don't "generally require" it either. Again, the guideline is "When available, academic and peer-reviewed publications, scholarly monographs, and textbooks are usually the most reliable sources... Deciding which sources are appropriate depends on context" (emphasis added). WP content must be based on RSs and be DUE, but that doesn't imply that all or even most DUE content can be sourced to academic sources. Lots of WP content is appropriately sourced to other kinds of reliable sources (news articles, government documents, advocacy groups, etc., as long as they're reliable). This Autism article will include content sourced to both academic and non-academic sources.
• You are misrepresenting Wikipedia:reliable_sources because it does merely refer to the unreliability of preprints ... Here is the quote again: "Research that has not been peer-reviewed is akin to a blog, as anybody can post it online. Their use is generally discouraged" And again, you've cut off the beginning of the quote: "Preprints – Preprints, such as those available on repositories like arXiv, medRxiv, bioRxiv, or Zenodo are not reliable sources. Research that has not been peer-reviewed is akin to a blog, as anybody can post it online. Their use is generally discouraged ..." By "their use," it's referring to the use of preprints. It is not a general discouragement of non-academic sources. blogs are also generally discouraged due to their unreliability Most blogs are self-published and so are not acceptable sources period, per WP:SPS; the only exceptions are if they're newsblogs (see WP:NEWSORG), or are written by an expert (in which case you want to see if there's a better source for it, and if not, whether it's DUE), or the use falls under WP:ABOUTSELF.
• The Scientific consensus essay is not a guideline either; "guideline" also has a WP-specific meaning, see WP:GUIDES.

FactOrOpinion (talk) 02:05, 16 December 2024 (UTC)

@FactOrOpinion, would you please start a discussion at Wikipedia talk:Reliable sources about how to make PREPRINTS clearer? Perhaps "Research that has not been peer-reviewed is akin to a blog, as anybody can post it online" becomes something like "Preprints are self-published"? It's obviously possible to publish non-peer-reviewed research offline (e.g., in a book or a popular magazine), so something's off there. WhatamIdoing (talk) 20:40, 16 December 2024 (UTC)

Done, though I just realized that I misunderstood your last sentence. I think non-online preprints are most often published in conference proceedings, not books or magazines, and perhaps conference proceedings should be added to the preprints section. FactOrOpinion (talk) 22:57, 16 December 2024 (UTC)

I meant non-pre-print, non-peer-reviewed publications. It is possible to do some research and write about it in a magazine instead of doing something that looks scholarly.

In re conference proceedings, see Wikipedia talk:Reliable sources#Conference proceedings. WhatamIdoing (talk) 02:46, 17 December 2024 (UTC)

Oolong, when someone explicitly and exclusively quotes each and every citation, where they literally conclude that autism is a neurodevelopmental disorder in the quote, they are not taking "an interpretation of [their] statements", let alone "eccentric interpretations". Directly quoting sources is the antithesis of a strawman.

You have not provided "mountains of evidence" contradicting the conclusions of all the evidence cited. Instead, you cite blog posts, opinions of advocacy groups, or advocacy papers/textbooks. As I have argued, some of the latter are peer-reviewed, but are contradicted by refutations, and are advocating for something that is not currently established, so they do not overturn autism as it's currently defined nor the scientific consensus in general. And when I cite and quote Wikipedia policies, you have baselessly rejected them.

The consensus statements, guidelines, diagnostic criteria, systematic reviews, and textbooks I have cited are, again, covering a variety of subfields about autism not merely about medicine as you keep insisting and unanimously recognise autism as a valid disorder.

This was made clear in a reply that explicitly quotes the content of the sources, so it's indisputable (see 1).

My credibility is irrelevant so it's something I actively care about here. The discussions and decisions are centred around scientific evidence, not whose more credible than someone else. Димитрий Улянов Иванов (talk) 18:11, 15 December 2024 (UTC)

If you can't see how 'there is a unanimous global scientific consensus on this thing - only 30% of articles published in the field disagree' is not a tenable position, we have a serious problem.

Your sources don't claim there is a unanimous scientific consensus on autism being a disorder, do they? Because no competent person familiar with the field would claim such a thing. Please stop pretending you are not going beyond what your sources actually show, and please stop lying about the sources I have provided.

@Ó.Dubhuir.of.Vulcan has demonstrated clearly and unambiguously that there exists substantial disagreement among autism researchers about the best way of thinking about autism (broadly, as a disorder or a value-neutral aspect of human diversity).

You have repeatedly suggested that a 2002 statement on ADHD conclusively demonstrated the compatibility between neurodiversity and a disorder-based perspective, when this paper doesn't even mention diversity, and its justification for the use of the term is something that many, many credible sources over the last 22 years would dispute. This paper came out only four years after the first mention of neurodiversity in print, so it's hardly surprising it doesn't mention it, let alone work to resolve any tensions!

Astonishingly, you are still citing a Wikipedia essay as a guideline that somehow mandates your own position, after it has been pointed out repeatedly that the box at the top of the page states very clearly that it is no such thing.

I have never once 'baselessly rejected' a Wikipedia policy. I have rejected the application of this non-policy document as if it was a policy, and I have pointed out a series of actual policies which point towards different conclusions from yours.

All this, and you have the nerve to accuse me of bad faith!

This is exhausting.

Please check yourself. Oolong (talk) 18:20, 15 December 2024 (UTC)

First, that statistic is based on one primary source of which I have refuted in my reply to @Ó.Dubhuir.of.Vulcan because I believe relying on it is problematic for several reasons. It's understandable if you haven't seen the reply but if you disagree, then I ask you please address my reasoning rather than reiterating the same argument.

The sources do not need to, nor did I say they do, explicitly state "unanimous scientific consensus". However, I cited several scientific consensus statements (please read the titles of them!) and scientifically-based consensus guidelines, which recognise autism as a neurodevelopmental disorder, and refer to it as such. Additionally, other citations such as the ICD-11 are essentially developed by a unification of scientists.

And this is not even accounting for the many other references. Collectively, they indicate a scientific consensus around the world.

Regarding the Wikipedia Essay, I did concede a long while ago in a reply to yourself that it's indeed an essay, to which you replied (and thus should have read) as I recall. However, it's also a guideline as it's there to help guide wikipedians, but more importantly, its conclusion references actual wikipedia policies to substantiate what was written - so dismissing it isn't a helpful approach as keeps happening. Now, I can see how guideline and policy can be obfuscated but that wasn't my intention, so I'll be more careful to say guideline from now on.

Previously, I cited the pertinent Wikipedia policies by quoting them explicitly, to which you replied that you disagreed with my fundamental characterisation of them, or something along those lines. This is rejecting the policies, because quoting them is the antithesis of a strawman and you basically were rejecting them outright.

I also find this discussion tiring, so I would like us to end it here. Димитрий Улянов Иванов (talk) 19:00, 15 December 2024 (UTC)

First of all, sorry for adding MORE when you are still working on the last, but in my defence I started writing this comment before I saw you were responding to my latest comments.

I was going to comment here on two things - first, when talking about "trivializing" impairments, it's important to remember that the neurodiversity movement isn't denying the reality of disability or support needs. This is pretty clearly demonstrated by the academic neurodiversity sources cited earlier in this talk (some of which I wrote - I'm Dwyer - do I have to declare a self-citation when I'm just redirecting to my works cited by somebody else?).

But second, I do agree that the medical model isn't being characterized quite correctly so far in this thread. It is arguably more challenging to define the medical model than the neurodiversity perspective because its advocates tend to present it as just being reality rather than clearly articulating its tenets as a particular subjective and contested viewpoint... But for one thing, @WhatamIdoing suggests that "If you have a set of neurodevelopmental symptoms, then all of those symptoms are autism (unless demonstrated to be something else)" is a feature of the medical model. Admittedly, neurodiversity advocates do tend to put more emphasis on how many of the most disabling things that can accompany autism are not part of its definition, but co-occurring with it. But the medical model definitely allows for co-occurring conditions, and especially in more recent years differential diagnosis has received increased attention. For example there had been restrictions in some clinical guidelines on simultaneously diagnosing autism & ADHD, but this was lifted (e.g., in DSM-5 in 2013). The various traditional medical model-aligned definitions like DSM and ICD all list a certain set of autism symptoms, and you wouldn't call other neurodevelopmental disability traits autism symptoms unless they were in those lists.

As @Oolong says the medical model generally only pays attention to traits perceived as undesirable. And @Димитрий Улянов Иванов is technically correct to say that the symptoms are viewed differently than the impairment, though the medical definition of the symptoms certainly places a strong emphasis on the negatives. (You can contrast the medical definitions for example with alternative definitions of autism traits, like Hartman et al.'s handbook definition https://uk.jkp.com/products/the-adult-autism-assessment-handbook which is adapted in this free guideline https://www.thirdspace.scot/wp-content/uploads/2024/03/NAIT-Neuro-Affirming-Reports-Guide.pdf). So there's a clear negative focus in the medical model symptom lists.

Ultimately though, it's hard as I said to find something saying "this is what the medical model is" from somebody who advocates for it. Probably best to just take the diagnostic manuals as present the perspective articulated in them as the medical model? It's arguably unfair to medical model advocates since in my anecdotal experience most of the pro-medical model researchers in my field have more nuanced views than the clinical manuals would suggest, because of the advocacy and political pressures affecting those manuals, but I don't see how we can put my anecdotal interpretations of what they "really think" above what they have said publicly said and published... Ó.Dubhuir.of.Vulcan (talk) 11:27, 15 December 2024 (UTC)

Mind you, the clinical guidelines would just be presenting the behavioural aspect of the medical model. So getting back to the original question here of what sources should be used to define the models, in terms of the medical/etiological/biological aspect of what medical model adherents believe, I guess the best sources might be biomarker and etiology review and research agenda papers, such as these?

Hughes, H. K., R.J.Moreno, & Ashwood, P. (2023). Innate immune dysfunction and neuroinflammation in autism spectrum disorder (ASD). Brain, Behavior, and Immunity, 108, 245–254. https://doi.org/10.1016/j.bbi.2022.12.001

Loth, E., Spooren, W., Ham, L. et al. Identification and validation of biomarkers for autism spectrum disorders. Nat Rev Drug Discov 15, 70 (2016). https://doi.org/10.1038/nrd.2015.7

Thapar, A., Rutter, M. Genetic Advances in Autism. J Autism Dev Disord 51, 4321–4332 (2021). https://doi.org/10.1007/s10803-020-04685-z

Within the biomedical literature, you'll notice a definite tendency over the years for an initial search for etiologies & "risk factors" for a single autism to have changed gradually to searching for multiple biological origins and underpinnings of heterogeneous autism. Ó.Dubhuir.of.Vulcan (talk) 11:51, 15 December 2024 (UTC)

Re: "do I have to declare a self-citation when I'm just redirecting to my works cited by somebody else?," AFAIK, you don't have to declare a self-citation, especially if you're only pointing to someone else's comment on a Talk page. See WP:SELFCITE (and you might want to read that entire page, but for right now, I think the other relevant text starts with "Subject-matter experts (SMEs) are welcome on Wikipedia within their areas of expertise, subject to the guidance below ...") and WP:MEDCOI. FactOrOpinion (talk) 02:20, 16 December 2024 (UTC)

Great to know thanks! I suppose it might be best to err on the side of transparency for things I wrote.

By the way, to further clarify my clarification about the biology, I should add that it's just the conceptual framing and terminology and emphasis here that I am referring to as examples of the medical model in action. Not the idea of autism as biological, which is hardly unique to the medical model.

Actually neurodiversity perspectives occupy this funny mishmash between

(1) biological essentialism (discussion of autism as inherent essence of a person - which seems particularly common among neurodiversity advocates in community, though more nuanced expressions of this recognizing autism's heterogeneity may also be found among those following a neurodiversity perspective in academic research) and

(2) social constructivism (emphasizing how autism is a constructed category created to understand real neurobiological and behavioural differences, and how this category is shaped by power relations etc.).

Also possibly a tension between the essentialism and the idea of diversity inherent in neurodiversity. But again, whether these contradict depends a lot on how they are expressed and certainly many neuro-affirming scholars and leaders try to keep a nice balance between these: recognizing the diversity of phenotype and etiology, acknowledging biological aspects of those, and recognizing the social construction of the understanding of all of this. Sorry, I keep on thinking of more details to add after my previous comments...

Two interesting papers on this:

Chapman, R. (2020). The reality of autism: On the metaphysics of disorder and diversity. Philosophical Psychology, 33(6), 799–819. https://doi.org/10.1080/09515089.2020.1751103

Ellis, J. (Manidoomakwakwe). (2023). Imagining Neurodivergent Futures from the Belly of the Identity Machine: Neurodiversity, Biosociality, and Strategic Essentialism. Autism in Adulthood, 5(3), 225–235. https://doi.org/10.1089/aut.2021.0075 Ó.Dubhuir.of.Vulcan (talk) 04:15, 16 December 2024 (UTC)

Oops, didn't see Mathglot's very helpful suggestion when I started jotting down this thought. Ó.Dubhuir.of.Vulcan (talk) 04:16, 16 December 2024 (UTC)

I have been looking at the Chapman piece, which gives a third option:

• Decide that the whole concept is invalid.

WhatamIdoing (talk) 02:47, 17 December 2024 (UTC)

I am not sure what an "invalid concept" is. Is it something misleading or meaningless, like doublespeak? Or a paradoxical assertion, like the barber paradox? Or an assertion that is false? Something else? Does Chapman provide an explanation, or can one be inferred from context? Mathglot (talk) 03:21, 17 December 2024 (UTC)

I think they respond to it as something like a Wastebasket diagnosis. This view (given the little bit I've read on it) seems to say that the label has become meaningless. Getting the label may be useful as a tool (e.g., if you get this label, then you get access to this clinic- or school-based program), but the practical differences between diagnosed people are vast, and the practical differences between some diagnosed and non-diagnosable people are small.

To give an analogy, the most unimportant precancerous spot and the most deadly late-stage cancer have some biologically commonalities, but they're really not the same disease in any sense that matters to the people who have them (or their families).

I think that the people holding this view feel the same about autism: the autistic adult who does not understand that jumping out of a window or out of a moving car could result in death has nothing important in common with the autistic adult with a PhD in computer science and a job as a senior software architect. The researchers may see a thread of biological commonalities, but this viewpoint says this is not the same condition in any sense that matters to the people who are affected by it. WhatamIdoing (talk) 07:47, 17 December 2024 (UTC)

Too much heat, and not enough light

This discussion started out okay, there were (and still are) disagreements on content, and on sources. That's okay, but I think this is going around in circles, and people are digging in their heels, and tensions are rising, and this is getting no closer to resolution, or at least, the tone is getting increasingly nasty for very little or no gain.

I suggest everybody go take a break, and go work on Rings of Saturn or whatever floats your boat, and come back in three days or however long you need, refreshed, and ready to start over with calmness and respect. This is just the observation and advice of one editor, and you don't have to take it. But things cannot go on like this. Seek other methods of dispute resolution if you find this is not working. A mediated discussion might be one way. Thanks, Mathglot (talk) 02:16, 16 December 2024 (UTC)

It’s worth noting that the recently published article on the Thinking Person’s Guide to Autism blog - where it was posited that Wikipedia’s information regarding autism is “systematically misleading” - is likely the source of the recent unrest. 2A02:C7C:9B04:EA00:781C:429E:1C28:ABE3 (talk) 07:00, 16 December 2024 (UTC)

Nope, the Thinking persons guide blog was published much later. The heated debate is going from earlier than that, and probably a tension exists from very beginning

2409:40E0:102E:C01E:8000:0:0:0 (talk) 21:12, 16 December 2024 (UTC)

The blog, by user Oolong, hints at requiring support for Wikipedia edits. Subsequent activity here and on the article page should be viewed in light of this. Organised editing is at least frowned upon, if not outright banned, on Wikipedia. 2A02:C7C:9B04:EA00:44C9:4AE5:A27:F349 (talk) 04:01, 17 December 2024 (UTC)

Do you mean "It could help if more people who know a bit about autism and neurodiversity spent a bit of time working together on Wikipedia’s coverage—perhaps reviving the dormant WikiProject Autism"?

Edit-a-thons and WikiProjects are surely examples of organised editing - perhaps you could clarify what you think is relevantly discouraged/banned here?

Thanks! I'm not trying to cause trouble here, but Wikipedia's autism coverage is systematically misleading (and out of date, and often poorly organised) so I've been doing what I can, in line with my understanding Wikipedia's guidelines and ethos, to improve it. Oolong (talk) 08:34, 17 December 2024 (UTC)

All meaning intended by the post is contained within the post. Edits organised outside of Wikipedia with the intention that a subject be weighted to an ideology should attract scrutiny. Page edits, and any considered rewrite, should be balanced by editors from across Wikipedia. 2A02:C7C:9B04:EA00:44C9:4AE5:A27:F349 (talk) 14:09, 17 December 2024 (UTC)

They certainly should.

Ideally, of course, those editors from across Wikipedia should be ones with some understanding of the topic under consideration - especially one as rich, contentious and nuanced as this! Oolong (talk) 14:13, 17 December 2024 (UTC)

That website doesn't look like a blog to me, and I'm not sure what WP policy you're referring to. Do you mean that the essay strikes you as a WP:CANVASS? If so, it doesn't come across that way to me. Rather, it seems more aligned with this WMF Whose Knowledge? campaign that I came across yesterday as I was investigating whether there is any general discussion about supporting the participation of people from marginalized groups. FactOrOpinion (talk) 15:36, 17 December 2024 (UTC)

Whose Knowledge? is not a WMF campaign. It is a different non-profit organization, and helping Wikipedia is only one of many projects for them. Their website is https://whoseknowledge.org/ if you are interested in learning more about them. WhatamIdoing (talk) 06:39, 18 December 2024 (UTC)

Whose Knowledge? is a Wikipedia affiliate, funded by the Wikimedia Foundation. Oolong (talk) 14:33, 18 December 2024 (UTC)

Yes, I worded my comment poorly. I do understand that they're a separate organization, and I'd already poked around their website a bit, though I should spend more time exploring. Are you aware of any essays, guidelines, etc. on WP that encourage editors to think about how we interact around these issues and what knowledge should be better represented on WP? FactOrOpinion (talk) 17:35, 18 December 2024 (UTC)

I'd start looking at Wikipedia:WikiProject Countering systemic bias. WhatamIdoing (talk) 22:34, 18 December 2024 (UTC)

Ooh, I'd missed that. Thanks for the link!

Anyone interested in this topic might also like to look up the free book Wikipedia @ 20, in which Wikipedia's failures to deal with systemic bias are very much a running theme.

Like the project you referred to though, disability and ableism are strikingly almost absent, although there are one or two mentions in the book, and Wikipedia:WikiProject Disability does exist... Oolong (talk) 10:30, 20 December 2024 (UTC)

TPGA is a neurotypically run blog, which promoted ABA for many years and now supports facilitated communication. Neither of these practices are compatible with autistic rights.

Edits based on an article from TPGA would reflect the opinions of autism industry professionals, rather than a marginalised people, and could potentially be used as a back door for the promotion of anti-autistic practises that they support. 2A02:C7C:9B04:EA00:9499:D70D:76AC:9C8C (talk) 06:33, 20 December 2024 (UTC)

I didn't know TPGA had ever supported ABA, probably because I've only been following them for eight years or so - although I knew from NeuroTribes that Shannon des Roches Rosa had supported it before she realised how much she could learn from autistic people about caring for and understanding her autistic son.

At this point the top link in their 'Understanding Autism' box in their main site navigation is 'Why No Autistic Child Should Be in ABA Therapy', and a high proportion of their articles are written by autistic people (including myself, the author of the article referred to above; I am very much not an autism industry professional).

I don't doubt that they have supported anti-autistic practices in the past, but again, I have not seen that in the years I have been following them (Facilitated Communication is of course highly controversial, but given what I have heard from people who used it and learned to communicate in other ways, I am not sold on it being anti-autistic). Oolong (talk) 10:22, 20 December 2024 (UTC)

TPGA promoted the work of Aileen H Sandoval-Norton - a treatment professional who believes autism is caused by thimerosal - just last month. Facilitated Communication is debunked and its inclusion in Wikipedia has already been litigated. 2A02:C7C:9B04:EA00:F104:371A:5F87:5238 (talk) 11:47, 20 December 2024 (UTC)

I'm familiar with the paper they linked - arguing that there is no real research evidence for the use of ABA in nonspeaking autistic people, and that its use amounts to abuse - but I had no idea that one of the three authors (Sandoval-Norton) had questionable views about Thimerosal. I wonder if the editors of TPGA knew this? It's pretty easy to miss - all I can find on it in a quick search is one tweet... has there been much more?

I spent some time looking into FC when I was researching this article, and found that there are many studies (as well as personal accounts) arguing that it can be effective for some people. I remain very suspicious of it, but Wikipedia seems to have gone for a blanket exclusion/dismissal of anyone who has ever used anything that looks a bit like FC, which is clearly not justified by the available evidence. Oolong (talk) 10:22, 21 December 2024 (UTC)

There are studies and personal anecdotes that suggest vaccines cause autism. These aren’t given a platform on Wikipedia as they are harmful and false.

We need to uphold a basic standard for autistics. If we allow one pseudoscience in, others will follow. 2A02:C7C:9B04:EA00:ED28:FC6C:BFFA:4BAB (talk) 12:27, 23 December 2024 (UTC)

Thanks for this. Yes, I'll do my best to stay away for a few days, and expect to need a Dispute Resolution procedure when I come back, although I hope not.

It's difficult not to get cross when someone persistently misrepresents your words and actions, as I'm sure you can understand. Oolong (talk) 09:45, 16 December 2024 (UTC)

Masking/camouflaging

Masking and camouflaging are not addressed sufficiently in the article, considering their importance to very many autistics and the fact that books and many scholarly papers have been written on this subject.

There is also the conundrum presented to the strictly 'medical model' of autism by masking. Can people with paraplegia mask their inability to walk, or the blind mask their inability to see? More cogently, can dyslexics or dyspraxics mask their problems with the written word or their motor difficulties? Perhaps to a limited extent in the latter two cases, but many autistics present a flawless, or close to flawless, external appearance of neuotypicality for their whole lives. By adapting, through various stratagems, often based on observation and the intellectual copying of neurotypical behaviours and societal norms, to 'standard' behavioural expectations, many autistics challenge the 'disease status' of autism on a daily basis. Urselius (talk) 09:34, 16 December 2024 (UTC)

Thanks for this! Yes, masking is in fact a glaring omission from my list of #Glaring Omissions elsewhere on this talk page.

(I mean I glaringly omitted it, not that it's on the list of omissions!)

I have thoughts about your other notes on this, but for now I just wanted to thank you for flagging this up. Oolong (talk) 09:48, 16 December 2024 (UTC)

Fundamental flaw persist in how a "pathology" is defined. Until that is going to be solved, the debate will continue.

I am an professionally diagnosed Autistic individual here, with a diagnosis of 70% disability on the ISAA scale (Which is "mild autism" , but at a borderline between 'mild' and 'moderate' severity.

I just went through your paragraph:

"Proposed alternatives to the current disorder-focused spectrum model deconstruct autism into at least two separate phenomena: (1) a non-pathological spectrum of behavioral traits in the population,[57][58] and (2) the neuropathological burden of rare genetic mutations and environmental risk factors potentially leading to neurodevelopmental and psychological disorders,[57][58] (3) governed by an individual's cognitive ability to compensate.[57]"

I would say, this distinction between pathological and non-pathological is ridiculous: it is not about who have it "less" and who have it "more". It is the exact SAME symptom that you can see through a pathological lens, or through a socio-cultural lens.

• For example, (1) I have severe "anomaly" in eye contact. I can't look at people while I am having a conversation, particularly while framing a sentence, producing a speech, thinking deeply, or esp. listening mindfully. I sometimes have to turn away from people, or cover my heads, or need to face the wall. It is extremely painful to watch people's eye while communication

Now how do you describe this? An outsider would either misinterpret as if I am uninterested, or as if I am telling lie or hiding somethin? or they may think I am lacking confidence? A medical doctor would describe it as a pathology.

• How I do describe this? I describe this as a society using some irrelevant signals like eye contacts, visual cues, small talk, etc. but not in a direct or literal sense. If they really really "mindfully" pay attention to what I am speaking, it does NOT require ANY amount of eye contact.

Since I do not describe my eye contact as a pathology, (Rather other peoples' constant and obsessive need for eye contact and indirect hints could also be called a pathology)... you may mistake AS IF that I do not need support about it. Yes I do need. I have been called out in job interviews several times for this. I face various problems in tuition classes and casual meetups. But the underlying reason is society.

They are NOT doing this deliberately. They don't know it. They have never seen a people like me. They are unfamiliar with my style of communication. So they feel as if I am being rude, or demonizes me.

Example 2: I have very severe sound sensitivities, especially towards sudden sounds as well as high pitch noise. It can be seen as a curse or a gift... it makes me awkward and alien when I do not appreciate firecracker and I get physically crippled in festive seasons due to firecracker noises. I scream, get meltdowns, break things, go restless, and sometimes get fever or cramps. But also It is a gift in that sense, it helps me to tune Tanpura and other musical instruments really quickly and accurately.

A medical doctor may describe it as a pathology, but I would describe it as being born in a society where everyone constantly need noise and stimulation.

Example-3: Whenever I go to a shop, I fall into problem, because I cannot calculate changes in my mind, so I require notepad to write down the currencies to plan the returns or how much extra I have to pay when a certain return is unavailable to shopkeeper. Like a thing costs INR 130 and if I pay him INR 150 he is unable to pay me INR 20 back. So I have to pay INR 180 so that he can return me INR 50. I require to do this ENTIRE chunking task on pen and paper, which ridicules the shopkeeper and they start to tease or mock. (arranging or sorting or grouping currency notes is not possible through a calculator)2409:40E0:102E:C01E:8000:0:0:0 (talk) 19:55, 16 December 2024 (UTC)

Now, I have other strengths, that the shopkeepers does not possess... and I do not really see this inability as a "pathology". I see this could b easily supported just if the shopkeeper does not pass his judgemental comments.

It is not like that some of my symptoms are "non-pathological" and some are "pathological". They are the same set of symptoms. You can see them either by pathology or by societal difference. BTW my symptoms doesn't kills me.

I would say an unrelated symptom which is probably not linked to Autism. My baseline body temperature is little bit low (96°F), and I feel fever and overstimulation, agitation, inflammation, delusional/ brain fog like state when it gets 97°F or 98°F, for which I NEED paracetamol 500 mg on an urgent basis but doctors wouldn't allow because 98.6°F is the "NORMAL", one size fits all baseline.

Therefore, it is my urge, the clinicians revisit how they define a "disorder", and when something is not exactly a "disorder" STILLL lot of supports Supports may be needed.

2409:40E0:102E:C01E:8000:0:0:0 (talk) 19:33, 16 December 2024 (UTC)

I am a former research scientist with a PhD in molecular biology, I am also a diagnosed autist, I also have almost zero abilities in mental arithmetic. I never know if the change I am given when buying something is correct or not. Given a piece of paper and a pencil, my mathematical proficiency is fairly good. Nice to know I am not alone in having this problem. Urselius (talk) 21:06, 16 December 2024 (UTC)

@Urselius Glad to know. Nonetheless I have higher proficiency in set theory and graphics. Due to my mistaken placement of signature, the article got broken. No, you are not alone, in WAIS-2 Adult full scale IQ test I have serious performance discrepancies, where I do terrible with visual comparison test (Where a weight balance and symbols with different wights are given). But I did relatively well in visual block design (esp. without gridline), matrix reasoning, etc.

Due to my performance discrepancies, in school I was seriously misunderstood by school teachers and sometimes by drawing teachers, since I was mostly worse at many things but unbelievably good at a few things.

I request you to reply at tge bottom of my discussion so that it would not break continuity of my writing. My point is that the same symtom can be framed as a pathological or non-pathological one. They aren't separate symptoms. 2409:40E0:102E:C01E:8000:0:0:0 (talk) 03:12, 17 December 2024 (UTC)

Topic missing or not elaborate enough

While talking about Autism, following things should be elaborated much more:

• 1. Meltdown
• 2. Shutdown
• 3. Burnout (More coverage needed)
• 4. Stimming
• 5. Punding
• 6. Hyper-empathy/ Empathy overload
• 7. Twice-Exceptional Children
• 8. Uneven cognitive profile (With diagram)
• 9. Monotropism
• 10. Theory of Mind and Double Empathy Problem (With diagram)
• 11. Autism and Working memory.
• 12. Autism and Semantic memory.
• 13. Autism and Episodic Memory
• 14. Autism and spatial intelligence.
• 15. Autism and Justice sensitivity.
• 16. Autism and Metacommunication.
• 17. AAC methods and AAC devices.
• 18. AAC letterboard
• 19. AAC apps
• 20. Colourful semantics (Trademark) and colour coded parts of speech
• 21. Autism and "strength based approach"
• 22. Autism and Routine/ Predictability
• 23. Autism and imagination/ imaginative thinking
• 24. Autism and Creativity.

2409:40E0:102E:C01E:8000:0:0:0 (talk) 20:15, 16 December 2024 (UTC)

Improve coverage of differential diagnoses and co-occurring conditions, provide data tables and venn diagrams

Some of the differential diagnoses and co-occurring conditions to be elaborated:

• Specific learning disorder (SLD) - Such as Dyslexia, Dyspraxia etc.

• Prosopagnosia

• NVLD (Nonverbal Learning Disorder)

• Schizotypic personality Disorder (Thorough distinction required within article).

• Introversion/ Introvert personality disorder.

• Social anxiety disorder

• Agoraphobia

• Generalized anxiety disorder

• PTSD, CPTSD

• Rejection sensitive dysphoria

• Major depressive disorder/ Melancholia

• Childhood depression

• Giftedness

• ADHD, ADD

• Borderline personality disorder.

• Obsessive-Compulsive disorder.

Best if you can make a compact table of the above conditions.

• X-axis : Name of the disorder

• Y-axis : Characteristics (Onset, Repeatitive behaviour, memory, learning, reflection on self, relating to others, social understanding, special interests, etc. ) 2409:40E0:102E:C01E:8000:0:0:0 (talk) 20:32, 16 December 2024 (UTC)

Make the article more accessible. Should be completely re-written

This article should be completely re-written for public health and education awareness. Also write the article in a way that boost confidence in Autistic readers.

• 1. Provide an Easy Read

• 2. Use Plain Language.

• 3. Keep sentences shorter and simpler.

• 4. Make the article less-technical.

• 5. Add infographics, sketches and cartoons to elaborate the concepts.

2409:40E0:102E:C01E:8000:0:0:0 (talk) 20:41, 16 December 2024 (UTC)

===Keep this article appropriate for the following population===

• Young readers
• Autistic readers
• Laypeople
• School teachers and Principals
• Educators
• Policy makers who are responsible for (in)accessible design

2409:40E0:102E:C01E:8000:0:0:0 (talk) 20:57, 16 December 2024 (UTC)

I think Easy Read versions of Wikipedia articles (across the board!) would be great! ...It's just that it's likely not something Wikipedia would consider within its scope. A lot of its articles are written in academic language, generally at a reading level somewhere north of 11th grade (this is based on the one time I tried to make a long, complex article Easy Read while keeping as much information as I could). English Wikipedia is supposed to not be overly technical, but it doesn't have to be written in plain language. Plain language is (somewhat) within the scope of Simple English Wikipedia, but that wiki is a different wiki with different rules (and often different editors working on the page). - Purplewowies (talk) 17:22, 21 December 2024 (UTC)

Special Section

Please provide some special and highlighted section on

• Executive Functioning

• Inclusion vs. Assimilation

• Bullying and Bystander Intervention

• Strength-Based Approach/ Strength-focused Approach

• Ableism and Inspiration Porn

• Autism and Giftedness

• Autism in history, literature, and tribal/ indigenous culture (Ubuntu, Takiwatanga)

• Current status of former "Asperger syndrome".

2409:40E0:102E:C01E:8000:0:0:0 (talk) 20:50, 16 December 2024 (UTC)

Adult Autistics

Require a vital section on Autistic ADULTS: Diagnosis, Rehabilitation, Accommodation, Employment, Education, Support, Healthcare, Sexuality and Sex education, etc. relating to Adult Autistics. 2409:40E0:102E:C01E:8000:0:0:0 (talk) 21:04, 16 December 2024 (UTC)

Autism and disability

This is a huge, interesting and important topic that ought to be covered with a bit of nuance in the article, but I'm posting here because I've been trying to edit what the lead says about it to make sense, and reflect what it claims to be reflecting.

Here's the current version:

"Public health authorities classify autism as a neurodevelopmental disorder, but the autism rights movement (and some researchers) disagree with the classification. From their point of view, autistic people may be diagnosed with a disability of some sort, but that disability may be rooted in the systemic structures of a society rather than in the person."

I'll be honest, I have no idea what "autistic people may be diagnosed with a disability of some sort" is supposed to mean. Does it mean another disability, or is it referring to autism? A disability "of some sort"? Which sort? This reads like a kind of garbled, Telephone Game attempt to summarise the social model of disability, as it manifests in the context of neurodiversity. Nobody is saying that disability is rooted in systemic structures rather than the person - how would that even work?

So I edited the second sentence to read:

"This perspective does not imply that autistic people are not disabled, but that disability is rooted not just in the person, but also in the systemic structures of a society."

This could probably be phrased slightly better, but it is, I think, an entirely accurate summary of the most prevalent view of disability within the autism rights movement, as exemplified by the source cited:

"Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly."

There is much more about what relevant people actually think about autism and disability in this excellent paper, for anyone interested.

I thought I'd better bring this here rather than edit warring. @Димитрий Улянов Иванов has twice reverted these edits, claiming that "sources are represented accurately this way"; @GigaMegaDigaChad reverted it, bizarrely claiming it looks like an "attempt to twist the narrative so as to push a certain POV"; @Urselius restored my edit, stating "Wording now ableist and 'othering' of autistic people", and Dmitriy (to use a Roman script transcription of his name) reverted it yet again.

I would like the lead to be accurate, balanced and easy to understand, which is why I made this edit. If anyone has a coherent explanation for what is wrong with my version, please explain here and suggest a better alternative. Thanks.

(as a side note, I also edited the first words of the next sentence from 'On the contrary, other scientists' to 'However, some scientists' because 'other scientists' makes no sense here grammatically; the disagreement is framed as being between these scientists and 'the autism rights movement', which does include many scientists, but not in a grammatically relevant way.) Oolong (talk) 10:38, 18 December 2024 (UTC)

I think some level of gaining a formal consensus of interested editors about contentious phrasing in the lead is becoming necessary. A single editor, correct me if I am mistaken, seems to be exerting, if not a stranglehold, at least undue influence on the wording of the lead. Urselius (talk) 10:54, 18 December 2024 (UTC)

The recent edit @Urselius made changing it to:

"From this point of view, autistic people may be diagnosed with a disability, but that disability may be rooted in the systemic structures of a society rather than in the person"

Is fine, in my view, as it has redacted the "of some sort" to reduce ambiguity. Changing "their" to "this point of view..." is not a significant improvement and their justification that the use of "their" is "ableist" is ridiculous, but using "this" is also acceptable and perhaps more accurate as it may not just be that movement specifically adhering to the perspective. So while I disagree with their basis, I think we should keep it this way.

The changes you wish to make are problematic for several reasons. @GigaMegaDigaChad made a crucial point, which you have conveniently omitted, is:

"the citation you use, implying its valid, states autism is not a disability in itself (what is autism - argues most with ARE disabled, rather than autism itself being a disability) so it directly conflicts with what you write here"

I don't disagree with the accuracy of "This perspective does not imply that autistic people are not disabled", but this is not an improvement as the current wording already suggests this by stating the disability may be rooted in society - not that it's nonexistent. The citation appears to espouse the narrative that the disability is itself rooted solely in society and not in ways inherent to the disorder. So they basically believe that many autistic people are disabled, but not because of their condition. This is why writing "but that disability is rooted not just in the person" seems unrepresentative of the source; from my understanding, they do not believe it's rooted in the person at all.

"other scientists" is not grammatically inappropriate as the preceding viewpoint is also stated to be held by some researchers (which are scientists), not just the Autism Rights Movement. For consistency, we could alter the paragraph to use only either scientists or researchers rather than both, but this is just a minor semantic point.

"On the contrary" should be kept, considering that the citations thereafter are in refutation to the perspective directly, while "however" is more ambiguous and does not imply that they are rebutting the prior viewpoint.

Thus, I recommend the following:

"Public health authorities classify autism as a neurodevelopmental disorder, but the autism rights movement (and some [researchers/scientists]) disagree with the classification. From [this/their] point of view, autistic people may be diagnosed with a disability, but that disability may be rooted in the systemic structures of a society rather than in the person. On the contrary, other [researchers/scientists] argue that autism impairs functioning in many ways that are inherent to the disorder itself and unrelated to society..." Димитрий Улянов Иванов (talk) 11:22, 18 December 2024 (UTC)

The source doesn't in any way contradict what I wrote. Disability arises out of a mismatch between a person and their environment. Any reliable source on the social model of disability will make this clear, including the Nick Walker essay (which I did not add, and was not relying on). It is quite wrong, and actually very odd, to suggest that disability arises from society with no reference to the individual. Please read up carefully on the social model if you want to keep inputting on this point - it looks like you are pretty new to considering it, given your incredulity at its use of 'impairment', and it really is indispensible to understanding these discussions.

"Other scientists" remains very poor phrasing when the main referent of the previous sentence is not scientists.

"Diagnosed with a disability" is a very unclear statement. They are diagnosed with autism. Is autism a disability? We've looped right back to one of the things at issue here. I personally would say it's a disability in the same sense that anything is a disability, but many adherents of the social model (and/or neurodiversity) prefer to say that the idea of 'a disability' is misleading, and reserve the term 'disabled' for the outcome of the interactions between a person with an 'impairment' and a (social) environment that is insufficiently accessible (or expects unreasonable things). We can't just state that people are "diagnosed with a disability" - to the extent that it's even a meaningful statement, it is assuming a particular conclusion.

On the whole, I also think trying to delineate who takes what positions is just confusing here. A fair summary of who takes what views is likely to take too many words for the lead. The neurodiversity perspective may have originated with groups that might be considered part of the autism rights movement, but it is far from restricted to it, as Dwyer et al (2024) among other sources make very clear. As previously discussed, substantial numbers of scientists, clinicians, charities, practitioners and family members of autistic people broadly hold views in line with the neurodiversity approach.

Conversely, the sources for the argument 'on the contrary' are published in the Journal of Applied Philosophy and Neuroethics; one of the co-authors is a neurologist by training, but it is misleading at best to describe the authors of these views collectively as scientists. Indeed - as the journal titles suggest - this is a philosophical question, not primarily a scientific one at all, so it is no surprise that most of the authors cited are philosophers. It also has political and legal dimensions; one of these papers leans heavily on the latter. It may well be that a great many scientists hold these views, but they are not necessarily the ones arguing for them, and when they are, it is not obvious that they are doing so in their capacity as scientists. It is also clear from Dwyer et al (and, incidentally, from my own experience) that not everybody with a stake here sees neurodiversity as ruling out disability in some cases being inherent to the individual, although some version of the social model is strongly associated with neurodiversity.

I drafted a very careful rewrite of this section last night, but I hit up against an edit conflict, and Wikipedia's 'Resolve conflicts' button instead lost my edit completely. I plan to try again today. Oolong (talk) 08:02, 24 December 2024 (UTC)

I do not opine on whether "their" in "From their point of view" is "othering", but the word "this" in "from this point of view" is ambiguous. It could reasonably be interpreted as referring to either the classification of autism as a neurodevelopmental disorder or the autism rights movement's disagreement. Clearer wording would be helpful. Mitch Ames (talk) 11:30, 18 December 2024 (UTC)

I disagree that any real degree of ambiguity exists, as reference to an immediately previous assertion is assumed in word order languages, such as English. However, would "From the latter point of view" suit? Urselius (talk) 11:42, 18 December 2024 (UTC)

"... the latter point of view" would suffice. Mitch Ames (talk) 13:38, 18 December 2024 (UTC)

I just did a quick search on Google Scholar and found 14 academic papers prominently flagging the social model of disability with regard to autism. This is not merely the fringe interest of activists, but the subject of scholarly investigation and debate. It is an almost invariable truth that medical thought and practise lag, sometimes considerably, behind relevant scientific and scholarly research and thought. Giving current medical practice absolute priority in an encyclopaedic treatment of autism, whilst ignoring current scientific thought, is doing any interested reader a distinct disservice. Urselius (talk) 11:34, 18 December 2024 (UTC)

Of course! It's very much a mainstream position - and even more so among practitioners in autism-related fields, and of course disability scholars, and even more so among autistic people and parents, than it is among psychologists.

Models of disability are just not a primary concern of many scientists in general, being more philosophical and political in nature than scientific as such, but obviously they have an impact on science (and vice versa). In particular, their prominence in the thinking and discourse of all the above groups has clearly encouraged many scientists to give them more thought. Neurodiversity and the social model of disability play a significant role in the framing and targets of much modern autism research - something strongly supported the research priorities not just of autistic people, but also families and those working with autistic people. Oolong (talk) 12:51, 18 December 2024 (UTC)

And there are 2.3 million results for autism unqualified. Information about the neurodiversity moment should probably go on the main article. It is very much a fringey position given the totality of what's been published on the subject. GMG^talk 13:25, 18 December 2024 (UTC)

Seriously?

Look at the top-selling autism books on Amazon. See how many of them take a neurodiversity-affirming approach. Look at what research finds about attitudes to autism, disability and neurodiversity in the broad autism community. Look at guides to autism for general readers written out updated in the last 5-10 years.

No, it is not "a fringey position". Oolong (talk) 14:44, 18 December 2024 (UTC)

There is no part of this where I care, or we should care collectively about what people are buying on Amazon. Neurodiversity has its own article. GMG^talk 14:56, 18 December 2024 (UTC)

Perhaps not, but the books that take a social model of disability approach to autism written by professional academic scholars are numerous, as are the academic papers, as I pointed out earlier. Ignoring this considerable body of scholarly opinion would be the opposite of encyclopaedic. Wikipedia is supposed to be an encyclopaedia, not some sort of mirror for diagnostic manuals and nothing else. Urselius (talk) 15:25, 18 December 2024 (UTC)

For subjects related to health and medicine, specifically no. Wikipedia follows the widely accepted mainstream view. GMG^talk 15:57, 18 December 2024 (UTC)

Old age is related to health. Sex and gender are both, separately, related to health. Race is related to health.

All of these, and autism, have many facets that are not about health - indeed, a strong argument can be made that most of what anybody is likely to want to know is not health information.

We defer to mainstream scientific and medical sources on questions about which they have authoritative things to say - things based on scientific evidence, particularly where meta-analyses and other high-quality secondary sources are available which back up specific points.

For other sub-topics, we should certainly avoid making statements that are contradicted by scientific evidence, but that categorically does not mean that we can't write about things based on other sorts of evidence. Wikipedia is not a medical or scientific encyclopaedia, and autism is not an exclusively medical topic.

And again, no, neurodiversity is not remotely fringey among mainstream autism and researchers, or neurodevelopmental psychologists more broadly. In 2023, Wiley announced a “multi-journal special issue” on neurodiversity across 38 journals, while Sage launched a scientific journal called Neurodiversity. Autism charities and government bodies are increasingly highlighting neurodiversity. Academic works published on it include The Neurodiversity Reader, Autistic Community and the Neurodiversity Movement, and Critical Neurodiversity Studies, among others. Various pieces in mainstream peer reviewed publications have argued the case for it.[5] [6][7][8] Several of the most influential autism researcher in the world have acknowledged the case for it.[9][10] Oolong (talk) 10:40, 19 December 2024 (UTC)

Just to add to this: it appears that the only existing handbooks for assessing adults for autism (written by scientists, clinicians and practitioners with a research background) are both written from a neurodiversity-affirming perspective: Is This Autism?, published by Routledge, and The Adult Autism Assessment Handbook, published by JKP.

Just to get most of the main references in one place, I should also add the systematic review Bottini et al (2024), which found that around 30% of the 2,322 articles they looked at used what the researchers considered neuro-affirming language. Oolong (talk) 10:59, 21 December 2024 (UTC)

Again, the scientific consensus attesting otherwise is global and goes far beyond mere diagnostic criteria. Nor is Neurodiversity as a concept incompatible with the consensus that autism represents a disorder where such diversity reaches a degree to cause significant impairment. Димитрий Улянов Иванов (talk) 17:28, 18 December 2024 (UTC)

Please explain to me, an autistic former research scientist, called an expert in my field in print, with publications cited in other scientific publications over 1,300 times, member of the Royal Society of Biology, fellow of the Linnean Society of London (as was Charles Darwin), married with two children, house owner, with a tidy sum in the bank and investments, am 'significantly impaired'. Autism causes me problems, that I generally overcome, but, compared to the average neurotypical person, I am not impaired in any measurable way and have achieved more in life than most. Urselius (talk) 20:36, 18 December 2024 (UTC)

As as a fellow researcher, as I'm sure you know, personal anecdotes are not considered scientific evidence that overturn results of controlled studies. Димитрий Улянов Иванов (talk) 20:38, 18 December 2024 (UTC)

That is not an explanation, scientific or otherwise. I was not seeking to comment on 'scientific evidence', I was just making a personal observation posed as a question. You have zero empathy for the effect of your overly negative wording in the article has on any autistic people that may read it. Lack of empathy is something we are supposed, incorrectly, to exhibit. Urselius (talk) 20:46, 18 December 2024 (UTC)

I understand your concern, Urselius, but it's a spectrum disorder for a reason. Not all affected are as impaired as others, so if one generalises their personal experience to others who are significantly impaired by their symptoms, it would not be evidence against the disorder. Similarly, if someone generalised their impairing symptoms to people whose symptoms are not impairing, it would be problematic. I'm not trying to being unsympathetic, just reflecting the scientific evidence on the matter. I also hope you understand that contrary to your opinion, many, many other people diagnosed with autism despise the neurodiversity movement for trivialising and erasing their experiences. For example, see for a discussion: https://www.reddit.com/r/autism/comments/15h1p6n/autism_is_a_disability_to_say_otherwise_is_harmful/ Димитрий Улянов Иванов (talk) 20:56, 18 December 2024 (UTC)

Advocates of neurodiversity overwhelmingly agree that autistic people are generally disabled, as references previously posted show clearly. The Reddit post you have linked both literally and figuratively says nothing about the neurodiversity movement.

It is an odd thing to cite in this context. Oolong (talk) 11:02, 20 December 2024 (UTC)

Well what I saw was people reverting over an author whose qualifications seem to consist mostly of writing a web comic, operating a self-publishing platform, and teaching at a place that wants people to trip shrooms as therapy, out of their "campus" that is just a storefront. You're probably going to have to do better than that if you want to make grand claims about scientific consensus, because these looks like new age whackjobs. GMG^talk 17:54, 18 December 2024 (UTC)

I agree with you; I was replying to Urselius. I meant that there is a scientific consensus that autism is a neurodevelopmental disorder, and you are correct to point out the citation for the neurodiversity movement perspective was problematic Димитрий Улянов Иванов (talk) 19:18, 18 December 2024 (UTC)

I am a scientist, my peer-reviewed publications have over 1,300 citations. I understand how professional science works. Science is not monolithic and publications that are 10 years old or older may not reflect current views, though they will form part of a consensus if they are included without any weighting towards more recent publications. For example,there is a very definite and ongoing trend in recent publications and in clinical usage to move from 'disorder' to 'condition'. If you use publications from around 1990, then the consensus was that around 75% of autistics have lower than average intelligence, now it is more like 30%. If your monolithic overall consensus includes the older figure it will be plain wrong for the present. Urselius (talk) 20:19, 18 December 2024 (UTC)

This is absolutely false. Around the world, the developers of scientifically-based guidelines, standardised diagnostic criteria, consensus statements, systematic reviews, meta-analyses etc. unanimously conclude that autism is a neurodevelopmental disorder, the references of which are the most up to date with respect to the e.g. guidelines and often from recent years (see Talk:Autism#c-Димитрий Улянов Иванов-20241126131200-Oolong-20241126104700). But you repeatedly leave all of this out as it would eviscerate your intentions. Димитрий Улянов Иванов (talk) 20:24, 18 December 2024 (UTC)

You have exerted a stultifying stranglehold on this article, supported by very selective views on what constitutes medical and scientific consensus. This has to end. Urselius (talk) 20:40, 18 December 2024 (UTC)

This is ludicrous. What, specifically, are you claiming is false in Urselius's post? Because I can't see a single thing that is even questionable. Oolong (talk) 11:04, 20 December 2024 (UTC)

No, it's not a "fringey" position. For example, when I did a Google Scholar search on ("autism" "neurodevelopmental disorder") and ("autism" "neurodiversity"), the respective number of results was 63K and 23.9K (of which the intersection accounts for ~2K), an imperfect gauge, but one that still provides info relevant to the lack of "fringey-ness." I'm also puzzled by your comment that "There is no part of this where ... we should care collectively about what people are buying on Amazon." WP:NPOV "means representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views that have been published by reliable sources on a topic." I'd say that widely read books about Autism give us useful information about which views are significant, though they don't tell us which are RSs. FactOrOpinion (talk) 17:53, 18 December 2024 (UTC)

Amazon search results mean exactly nothing. There's not much further debate to be had there. GMG^talk 17:59, 18 December 2024 (UTC)

They mean nothing to you. Whether they're meaningful to other editors is up to those other editors. How do you assess what non-research views are significant? FactOrOpinion (talk) 18:14, 18 December 2024 (UTC)

Not Amazon search results? GMG^talk 18:27, 18 December 2024 (UTC)

Yes. How do you assess which non-research views are significant when it comes to "representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views"? FactOrOpinion (talk) 18:58, 18 December 2024 (UTC)

For medical or health topics, we would generally look for meta-analysis, textbooks, or professional guidance from recognized institutions. These subjects have among the highest burden of proof as readers may make health related decisions based on Wikipedia, and so providing flawed information could be actively harmful. GMG^talk 19:54, 18 December 2024 (UTC)

But medical and health info is not the only info relevant to the Autism article. So I'll try to make my question clearer: for info in the Autism article that doesn't fall under MEDRS, how do you assess which non-research views are significant when it comes to "representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views"? FactOrOpinion (talk) 20:34, 18 December 2024 (UTC)

Certainly not some rando's self published book. GMG^talk 21:14, 18 December 2024 (UTC)

I didn't ask you what you wouldn't accept. I asked you how you do assess which non-research views are significant. Surely you understand the difference. I'm still hoping that you'll answer my actual question. FactOrOpinion (talk) 21:23, 18 December 2024 (UTC)

Critical thinking and context? There isn't like a checklist where if you tick seven out of ten boxes then you count. Even the same source may be both reliable and unreliable depending on the usage. Green Eggs and Ham is perfectly fine for the article on the book. It's not very useful for the main article on Ham. If you're looking for hard-fast rules to evaluate sources, then you're going to be disappointed. GMG^talk 12:38, 19 December 2024 (UTC)

I didn't ask about the evaluation of sources, nor did I suggest that a checklist was involved. Again, I asked: How do you assess which non-research views are significant when it comes to "representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views"? Critical thinking and context alone cannot tell you whether a view is significant. For example, you said "the neurodiversity moment [sic] ... is very much a fringey position given the totality of what's been published on the subject" of autism. You assessed that the neurodiversity perspective is not a significant view. You should be able to explain how you went about assessing that. FactOrOpinion (talk) 14:04, 19 December 2024 (UTC)

"I didn't ask about the evaluation of sources" ... "How do you assess which non-research views are significant"

Umm...I'm not sure what semantic distinction you think you're making. But my answer remains the same. GMG^talk 14:18, 19 December 2024 (UTC)

I'm surprised that you don't see a semantic distinction between sources and views. Are you truly suggesting that when you read WP:NPOV, "All encyclopedic content on Wikipedia must be written from a neutral point of view (NPOV), which means representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views that have been published by reliable sources on a topic" (links and emphasis in the original), you don't understand why "views" and "sources" link to very different content? If that's the case, perhaps you should follow the links to help you better understand their meanings. I'm trying to AGF, but you seem to be working very hard not to answer the actual question. FactOrOpinion (talk) 14:49, 19 December 2024 (UTC)

I can assure you I'm quite familiar with the policy. You seem to think there is a thing called "a view" that is disconnected from sources. It's sources all the way down, and there is no views that Wikipedia cares about sans sources. GMG^talk 15:03, 19 December 2024 (UTC)

I said nothing that suggests there is a thing called "a view" that is disconnected from sources (emph. added). I pointed out that "views" and "sources" have different meanings, so it should have been clear what the semantic distinction was in the two excerpts you quoted from my comment, and that my question about how you assess whether a view is significant is not asking for hard-fast rules to evaluate sources. Assessment doesn't always involve rules, and "connected" doesn't mean "interchangeable." For example, re: your claim that the neurodiversity moment [sic] ... is very much a fringey position given the totality of what's been published on the subject of autism, in what way did you assess "the totality of what's been published on the subject"? Too much has been published for a single person to read everything in that totality, so your assessment isn't based on reading it all. What was your assessment of its insignificance based on? Agreed that "there is no view[] that Wikipedia cares about sans sources," but when sources exist, we're still tasked with assessing whether they do or don't present significant views vis-a-vis the article's subject. FactOrOpinion (talk) 16:36, 19 December 2024 (UTC)

Okay. I'm done. Good luck. GMG^talk 16:42, 19 December 2024 (UTC)

You could have saved both of us a lot of time by responding to my initial question with "I'm not willing to explain how I assess a view's significance." FactOrOpinion (talk) 16:50, 19 December 2024 (UTC)

Thanks, @GreenMeansGo, for pointing this out. Multiple times I've cited Wikipedia's guidelines which indicate that peer-reviewed sources and scientific consensus are to be relied upon when available, yet contrarians insist on such non peer-reviewed sources. It's also disappointing to see the global scientific consensus[1] frequently omitted by them from these discussions, as it has been clarified numerous times on this talk page. Димитрий Улянов Иванов (talk) 19:42, 18 December 2024 (UTC)

FOO, autism is not the only neuropsych situation for which varying viewpoints exist, so perhaps looking at some others will produce a functional model. Two obvious examples are Culture-bound syndrome and Anti-psychiatry.

Generally speaking, we're looking for MEDRS-style sources (of any reasonably common viewpoint) for biomedical information. If a viewpoint isn't in the biomedical line, then we usually want something similarly scholarly to contest it. They can be sources that describe views the authors don't hold (e.g., anthropologists describing the Hmong beliefs about epilepsy being a spiritual condition), but they should be high-quality sources. We want to avoid using informal sources (e.g., social media, news media) to debunk the POV presented in MEDRS-style sources.

A simple answer is: If the non-biomedical viewpoint is in multiple-to-many scholarly sources, then it's probably worth mentioning. WhatamIdoing (talk) 07:31, 20 December 2024 (UTC)

Thank you for this helpful summary of what Wikipedia guidelines actually say about this. Oolong (talk) 07:23, 24 December 2024 (UTC)

Impairments

A closely related issue is the idea of impairments. It's important to realise that this is a technical term in diagnostic manuals. It is not being used in its everyday meaning, in the context of diagnoses; it is, instead, largely interchangeable with 'disability' - something I only registered as a result of these discussions. https://pmc.ncbi.nlm.nih.gov/articles/PMC2691163/

ICD-11 requires that 'symptoms result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning' - the phrasing in DSM-5 is similar, but lists fewer examples. Functioning is "a construct capturing how an individual’s engagement in everyday life emerges from the interaction between the individual and their environment" (ibid).  This suggests that both diagnostic manuals are actually using something much more similar to the social model of disability than is often assumed! People do not qualify for a diagnosis unless, in social contexts such as those listed above, their 'deficits' prevent them from doing what people would 'normally' be expected to be able to do.

I am not suggesting that there is no tension between the psychiatric approach here and the social model widely favoured in disability studies, but it is instructive to recognise that the tension is not as great as it might first appear. As we work towards a Wikipedia entry based on a balanced compromise between different, competing interpretations of available data, identifying such parallels could prove very helpful.

However, the difference in language choice is also important to recognise: in particular, the term 'impairment' is used here in more-or-less the opposite sense from its use in standard formulations of the social model of disability! That is to say that disability theorists (and activists) use the term 'impairment' specifically to refer to the inherent differences within the person, while 'disability' as such is generally taken to result from the interaction between a person and their environment. Psychiatrists, at least in the context of the diagnostic manuals, reserve the term 'impairment' specifically for the latter.

Wikipedia requires that lead sections (and to some extent, where possible, articles as a whole) are written in a way that can be easily understood by a layperson, and not be open to misinterpretation. Wikipedia guidelines specifically instruct us to guard against jargon that is used with different, conflicting meanings in other contexts.

This is why I edited the lead section of the article a few days ago to say "A formal diagnosis requires that these cause significant 'functional impairment', for example in social or occupational contexts." Many sources discussing the requirement for impairments in areas of functioning describe this as 'functional impairment', which I took to be sufficiently clear and unambiguous not to be mistaken for the everyday sense of 'impairment' or its specific meaning in disability studies.

Димитрий Улянов Иванов (talk · contribs) doesn't seem to have provided any explanation for his reversion of this particular edit, but perhaps he or someone else would like to formulate alternative phrasing which avoids the ambiguity, without adding significantly to the word count? — Preceding unsigned comment added by Oolong (talk • contribs) 10:24, 19 December 2024 (UTC)

FAQ template

Talk:Autism spectrum, which is a talk page to what is now a redirect, appears to have a FAQ regarding autism that was used prior to the merge discussion. Should the FAQ be moved here? Lazman321 (talk) 07:40, 19 December 2024 (UTC)

Yes, that was just a failure to properly complete the merge.  — SMcCandlish ☏ ¢ 😼  04:01, 23 December 2024 (UTC)

 Fixed  — SMcCandlish ☏ ¢ 😼  04:04, 23 December 2024 (UTC)

Response to "Impairments" by Oolong

Oolong makes a number of critical comments regarding the inclusion of the term "impairments" in the article. From my end, I cannot reply directly to the post by Oolong. My response to the criticism is as follows:

The paper by Üstun and Kennedy (2009) is in reference to prior iterations of the ICD and DSM as reflected by its release date. It also advocates for a deliberation on these matters. One paper hardly provides provide sufficient evidence for the interchangeability of the terms impairment and disability, nor a preference for the latter. The totality of high-quality citations indicating otherwise are discounted by Oolong by reference only to the aforementioned paper (rather than a more comprehensive assessment of the prevailing evidence).¹

Impairment is hardly an ambiguous term because it has been defined explicitly for neurodevelopmental disorders, and using the term "disability" to describe the same concept would actually add ambiguity by contradicting the global scientific consensus.¹ As I recall, its validity goes as far back to at least the first International Consensus Statement on ADHD (Barkley et al., 2002), the definition of which is supported by the most recent International Consensus Statement (Faraone et al., 2021-2024).

The fact that some functional impairments associated with disorders are implicated in a society, does not suggest the impairment itself arises from the society, and therefore would not coincide with the "social model of disability". For example, social anxiety disorder undoubtedly impairs the functioning of individual's in social settings, however this is often related to the person's inner anxious experiences with social situations which are the result of their neurology. Symptoms are expressed including through excessive mental preoccupation, worry, and the occurrence of physical symptoms, and the resultant impairments in major life activities are not indicative of faults of the society but are directly attributable to the symptoms themselves. Similarly with ASD, it also affects major life domains that are not societally implicated such as self-sufficiency or self-care. Simply reengineering society would therefore not eliminate the disorder.

I did partly explain my edit in the summary; but I couldn't elaborate fully under the space constraints.² I did not revert the prior edit but rather the unjustified, unnecessary, and factually misleading, quotation marks centred on impairment. Further, I reinstated the diagnostic requirement of developmental and sociocultural inappropriateness per the ICD-11 and DSM-5 cited. Димитрий Улянов Иванов (talk) 22:35, 19 December 2024 (UTC)

FWIW, there was no "reply" button because the comment was unsigned. If you ever encounter that, you can use the unsigned template to add a note (which I've done), and a "reply" button will be created simultaneously. FactOrOpinion (talk) 23:10, 19 December 2024 (UTC)

I can't find an article on Impairment (disability) (Impairment is a disambiguation page), and I think we should probably write that article. WhatamIdoing (talk) 07:34, 20 December 2024 (UTC)

Up to my common sense, impairment usually mean the biological aspects, and a disability means a barrier in societal aspect (societal participation, having voice, having access to the same things that a non-disabled do). For example: Retinal detachment or glaucoma is more of an impairment, but resulting situation such as inability to access books or a public library, lacking navigation support, etc. constitutes the disability. Sometimes a disability is not necessarily a deficit but a mismatch. Whereas not all deficits lead to a disability, such as draconian politicians (I would not name anybody) often lack affective empathy or conscience, to a various extent, and have excess of other dark triad traits ... but it does not put them in disadvantage, rather it makes them uninhibited to get what they want... by hook or crook. It makes them more advantaged. Distinguishing an impairment or a disability can be an interesting philosophical-ethical challenge, and that debate itself should cover a page. RIT RAJARSHI (talk) 20:12, 20 December 2024 (UTC)

That is my impression as well: when one makes a distinction between impairment and disability, then impairment is a sort of statistical difference from the unremarkable ordinary, and disability is society's failure to accommodate that difference. However, not everyone makes the distinction. This makes it difficult to know how to interpret statements such as "Advocates of neurodiversity overwhelmingly agree that autistic people are generally disabled" because it is unclear whether that means the agreement is about autistic people being impaired or about them being un-accommodated by society. We can all agree that some autistic people "use vocalisations/echolalia/chunked phrases for self-regulation or enjoyment"; the question is whether everyone agrees whether that's an impairment (a statistically non-normal behavior) or a disability (because people sometimes get mad if the autistic person is noisy at inappropriate times/places). WhatamIdoing (talk) 01:05, 21 December 2024 (UTC)

This is why when I edited the lead, it clarified that "This perspective does not imply that autistic people are not disabled, but that disability is rooted not just in the person, but also in the systemic structures of a society."

I see that the explanation of what neurodiversity means for disability has now been removed entirely, and instead it just says "From this point of view, autistic people are representatives of human neurodiversity where their social problems are caused by social stigma, and that they should be accepted rather than cured."

This is not just unhelpful, but hopelessly inaccurate. It looks like it was removed by @GreenMeansGo because they think Nick Walker smells fishy. I suppose I'll go and put it back with a different reference for the extremely uncontroversial point that was being made. Oolong (talk) 18:36, 23 December 2024 (UTC)

As I have said, the term 'impairment' is extremely widely used in disability studies and the disability rights movement in a sense that directly contradicts what I have just recently learned is its technical meaning within psychiatry.

I did not say that the model used by the diagnostic manuals is the same as the social model of disability. Oolong (talk) 18:40, 23 December 2024 (UTC)

Oolong, if you happen to have a high-quality source that directly contrasts the disability vs psychiatry meanings, I'd very much like to have it. That's exactly the kind of thing I think should be in any Impairment (disability) article we write. You can post it on my talk page if you'd rather, as it's not directly about this article. WhatamIdoing (talk) 23:12, 23 December 2024 (UTC)

It's a good question, but not so far, no! Like others in this discussion, I hadn't realised until recently that it's used in this specific technical sense by psychiatrists; I have various high-quality sources confirming that it is, and endless sources on the social model, but nothing that points out this striking contradiction. Oolong (talk) 07:13, 24 December 2024 (UTC)

I'm wondering if something might exist in literature written by linguists. This issue of different meanings in different groups is an example of sociolinguistic registers. If I have time, I'll see if I can find something later today. FactOrOpinion (talk) 15:15, 24 December 2024 (UTC)

Just a note that I did spend time trying various searches to see if I could find something, but failed to find a helpful reference (which of course doesn't mean that it doesn't exist). FactOrOpinion (talk) 23:48, 24 December 2024 (UTC)

It is a little like the technical meaning of a 'theory' in science - a proposal that best fits the evidence available - and the perception by the general public - something that is not concrete, that is uncertain. The problem is not about the technical meaning of the words 'impairment' and 'impaired' (also 'deficits'), it is how these words can and are understood by the average reader of this article. The words can often be interpreted in a way that implies that autistic people are impaired in a global manner. This is, I can say with some authority as an autist myself, an insulting concept. Autistic people receive more prejudice in society than many other groups and anything that might tend to mitigate this prejudice, by subtle changes of wording while retaining meaning, should be done. Urselius (talk) 15:08, 23 December 2024 (UTC)

The term is almost unanimously used in the context of a particular symptom, dimension of symptoms, or the disorder itself. This is accurate and cannot be reasonably misinterpreted as implying that the person is impaired in general.

Respectfully, you are omitting the fact that many people with neurodevelopmental disorders (NDDs) - including ASD - find the erasure of these terms trivialising. It obfuscates them, who are impaired by their symptoms to be diagnosable, with people who exhibit autistic-like traits but are unimpaired and thus don't have ASD. It also obfuscates them with forms of diversity such as gender identify, or sexuality, that are valid but not disabling or impairing. Portraying disorders as mere neurodiversity that otherwise cause no harm can result in policymakers rescinding treatments, entitlements, and other forms of interventions.

That's not to say a significant subset of advocates disagree with the terminology, as you point out, but it's a highly selective representation if the opposing group is excluded from these discussions. Notably, many of the former advocates (e.g. the autism rights movement) also believe in self-identification for ASD; that it is the individual themselves who ultimately determine if they have it or not. Relying entirely on self-report is not only problematic because it leads to substantial underdiagnosis (and to a lesser extent, overdiagnosis), but would indicate a discrepancy of diagnoses between the different types of advocates. Димитрий Улянов Иванов (talk) 15:45, 23 December 2024 (UTC)

However, the neurodiversity viewpoint is not the sole domain of advocacy groups, it has been the subject of clinical, sociological and scientific comment including books written by academics and papers written by clinicians, research scientists and research sociologists. There's the rub, you do not seem to be able to acknowledge the existence of this facet of neurodiversity to any appreciable extent. You seem to consider that the neurodiversity paradigm is merely a fringe theory, the sole domain of unqualified autism advocates, when it is demonstrably not. I own five books by academic scientists taking neurodiversity very seriously, many more academic papers with the same viewpoint, or treating it on a par with the medical view, can be found online. I realised that I fit the autistic neurotype myself, did a huge amount of research on it, became convinced that I was indeed autistic, then sought a clinical diagnosis from a specialist psychiatrist. Not every autistic advocate or believer in neurodiversity is self-diagnosed. I am arguing for two things, that offensive terminology is toned down, not so that its meaning is changed, just so that its impact is less unpleasant, and that the two current viewpoints on autism are given a more equal treatment. The purely clinical 'medicalised' treatment of autism is currently challenged, in serious academic works, by the neurodivergence paradigm. As such there are two largely competing theories relevant to autism and, as in any such debated topic they should be treated equally, one should not be given a false unassailable rectitude, the other consigned to being a mere fringe interest. Urselius (talk) 16:36, 23 December 2024 (UTC)

I think the difficulty here is that "less unpleasant" cuts both ways. When the situation is extremely unpleasant, then making it sound "less unpleasant" feels like covering up the truth.

If you are talking about an adult with a variety of talents, skills, and coping mechanisms, then you might want autism presented as a set of traits that might need accommodation – work from home, a quiet office, not attending meetings all day long, not getting sent to sales events to make small talk with hundreds of people – but nothing that makes you seem less-than.

If, on the other hand, you are talking about someone with serious behavioral problems, then you might want the opposite. When the actual problem is that one child slightly bumped into another on the playground, and the second child instantly responded by violently attacking the first child, then "Little Bobby is a great kid with many wonderful abilities. Because of his autism, he sometimes struggles with understanding other people's intentions, so when your child slightly bumped him, he seems to have misunderstood it as a life-threatening attack" might be a technically accurate description of the underlying problem, but it sounds like Whitewashing (communications). Honesty in this case sounds much more like "Bobby is severely impaired" than "Bobby has autism, and there's nothing wrong with that!"

I don't know how to strike the right balance here. Everything that is accurate for the minority of autistic people with serious, sometimes even life- and health-threatening impairments is going to sound too dire and even insulting when used to describe the minority of high-performing, often adult-diagnosed autistic people. I read recently about an autistic adult who died because he wanted to go swimming, couldn't understand that this was the wrong time and place, so he jumped over the safety rail and plunged to his death in the ocean. I also read recently about an autistic adult who created a multi-million dollar business, which he says was helped by his autistic traits. How do you accurately describe the very serious impairments of the first man, without making the second man sound like he's got the same impairments? Twenty years ago, we solved this conundrum by giving those two different labels. Now the problem is how to describe them as having the same thing, when only the second sort of adult shows up in discussions about whether we've struck the right balance. WhatamIdoing (talk) 00:24, 24 December 2024 (UTC)

This is rather controversial, but is rooted on the genetics as I interpret it (I am a molecular biologist/genetic engineer). I rather suspect, on the grounds of some recent genetics papers, that in the long run there will be an increasing separation recognised between autism without intellectual impairment and autism with intellectual impairment. The intelligence profile of the general population is a classic bell curve, that of autistic people has two peaks, one above and one below 'average' intelligence (average for the general population) with a saddle in between. This alone is suggestive of not one, but two conditions being involved. The genetics papers appear, at least to me, to highlight two major classes of genetic causes of autism: 1) largely hereditary, caused by an above average incidence in one person of genetic variants common in the general population, these variants tend to be very small changes in DNA, such as point mutations, some of these variations appear to be beneficial and some are associated with higher academic achievement. 2) caused mostly by de novo mutation, with a smaller hereditary component, these mutations tend to involve larger changes in DNA, deletions, transpositions and duplications of longer stretches of DNA, these are apt to involve more severe effects on cognition. An individual person could have a combination of both types of genetic causes, of course, perhaps accounting for some of the 'saddle' in the autism intelligence curve. Urselius (talk) 10:36, 24 December 2024 (UTC)

Perhaps in another generation, the world will have figured out what autism is.

But you shouldn't assume that playground misunderstandings always, or even usually, involve intellectual disabilities. Little Bobby could well have above-average intelligence. There's nothing about high IQ that makes a human immune to a "fight" response instead of "flight" or "freeze", and there is something about autism that puts autistic people at risk for being startled (e.g., being so hyperfocused on watching an ant crawling across the playground that he didn't realize anyone else was even nearby, much less close enough to bump him).

I only assume that people who are assessed for intelligence and are found to be below average intelligence, are in fact of below average intelligence. I am aware that IQ tests have problems, but they can discriminate between the intellectually gifted and the intellectually disabled, reasonably well. Urselius (talk) 07:52, 25 December 2024 (UTC)

My main concern is that in trying to make the article sound like people with PhDs and autism could be great employees, we may cover up the facts that explain why none of Bobby's classmates feel safe playing with him, and why, despite it occasionally being unsafe for kids to be within arm's (or fist's) reach of him, it doesn't mean his moral character is bad. WhatamIdoing (talk) 22:23, 24 December 2024 (UTC)

Worth noting that autism with and without learning/intellectual disabilities clearly runs in the same families (along with ADHD and so on).

Also, it seems to be common for people to realise they're autistic after working with autistic and learning disabled people, and noticing that they find the experiences of their charges much more relatable that their colleagues.

So while articulate autistic people are inevitably over-represented in vocal and visible autistic communities, very disproportionately many of us have professional and/or familial experience with those who have greater support needs, etc. and of course, there have always been a range of levels of disability represented in the neurodiversity movement.

So while it is important to keep in mind the different experiences and needs of those with co-occurring learning disabilities or who are very disabled for other reasons, there is still a great deal of knowledge and experience regarding this group among the rest of the autistic population.

Past attempts to divide the autistic spectrum into sub-categories have largely been unsuccessful, as you are probably aware! Oolong (talk) 12:53, 24 December 2024 (UTC)

I am not talking about any sort of 'attempt', but about two main classes of genetic causes of autism. This is science, not sociology. Urselius (talk) 07:52, 25 December 2024 (UTC)

Yes. I was struggling to reconcile your 'two main classes of genetic causes of autism' with what I know about the genetics of autism, but you obviously know much more about genetics and molecular biology than I do!

We know that many of the hundreds of genes seemingly associated with autism are found in those whose autism manifests in very different ways; I guess you're saying that it's some kind of interaction between these genes and largely de novo mutations that leads to autism-with-learning-disabilities appearing in the same families as autism-without? Oolong (talk) 08:02, 26 December 2024 (UTC)

The same ("many of us have professional and/or familial experience with those who have greater support needs") is true for clinicians and parents, but the "nothing about us without us" mentality usually seems to want to disregard their "experience with those who have greater support needs". WhatamIdoing (talk) 22:10, 24 December 2024 (UTC)

"Nothing about us without us" doesn't imply "nothing about us with anyone except us". It does need to be understood in the context of societies where things about disabled people are being done without disabled people all the time, though, so it's probably inevitable that tensions will arise between people pushing for less of that, and people pushing for some of that (even when the latter group have good reasons).

I think a lot of the tensions around this kind of thing have to do with misunderstandings between people pushing for change in some direction, and those who have worries about things going way too far in that direction! So for example, shutting allistic professionals and family members out of discussions of autism entirely is clearly not on the cards, but it might feel like that's what some people want when they push back against systems where those groups heavily dominate discussions at present. Similarly, the neurodiversity movement pushes for depathologisation, on the grounds that interpreting everything that makes neurodivergent people different as pathological is wildly unhelpful, and also unscientific; but that causes some people anxiety because of fears that, for example, if all neurodevelopmental differences were suddenly removed from diagnostic manuals overnight, and clinically-based services were withdrawn, that would be bad! But we're so, so far from that happening, and clearly that's not what anybody wants, so...

In any case, it is true that some people advocating from a relatively low-support-needs perspective don't always understand the experiences of people with higher support needs, and the families and professionals trying to take care of those needs. This does cause tensions and problems at times, and in the Wikipedia context, it's important to bear this in mind - without losing sight of what autistic people with higher support needs are able to say about their own perspectives, or the fact that many autistic people who are articulate on the internet may have very relevant experience, and in some cases much greater support needs than some might guess from their articulacy. Oolong (talk) 08:20, 26 December 2024 (UTC)

In re cannot be reasonably misinterpreted as implying that the person is impaired in general: You might not think it "reasonable", but it happens. See also every server who turns away from a wheelchair user to ask their tablemates what the wheelchair user would like to eat, every blind person who is assumed not to know how to navigate their own neighborhood, every visibly disabled parent who is assumed to be unable to care for their own children, etc. WhatamIdoing (talk) 23:28, 23 December 2024 (UTC)

Dispute Resolution Request

Obviously several of us have been arguing in circles for some time now, so I have opened up a Dispute Resolution request.

Parties I have named besides myself are @Димитрий Улянов Иванов, @Ó.Dubhuir.of.Vulcan, @HarmonyA8, @TempusTacet, @WhatamIdoing, @FactOrOpinion and @GreenMeansGo. I understand that participation in this process is voluntary, and I don't believe it is restricted to those named (I could have include many more handles if I'd gone back a bit further - please chime in if there's anyone you think should be included).

Discussions should of course be "civil, calm, concise, neutral, objective and as nice as possible."

Of necessity, the request is couched in pretty broad terms; underlying disputes have surfaced in so many different ways, over so many years, that obviously the recent tensions are just the tip of the iceberg. I am aware that in general, it would be better to keep requests shorter, but I wanted to make sure that anyone coming in could make some sense of what's happening here. Oolong (talk) 16:04, 20 December 2024 (UTC)

I think RIT RAJARSHI might wish to know as well, as they'd placed an "unbalanced" tag on the article, which was quickly reverted by Димитрий Улянов Иванов, leading RIT RAJARSHI to voice concern at the Teahouse about the imbalanced article content and contentious Talk page discussions (which is what drew me to this Talk page). FactOrOpinion (talk) 17:27, 20 December 2024 (UTC)

Thanks for telling me but I am highly sensitive person unable to handle mental stress and conflicts. I also have privacy concerns. And also I get scared if I get a lot of public attention. I am NOT just good with tension filled situation. I have specifically mentioned on several places that I wanted to quit this discussion (at least for now); as my mental health condition is not supporting. I get easily influenced by other peoples' negative emotions and criticisms. I still think the article is misleading and lacking a balanced view, but I expect the editors to be kind and empathetic enough to try to understand the harms of a scientistic-reductionist view of human beings, the harms of strictly medical model or a deficit centric tragedy model. Noted neuroscientist Robert Sapolsky also discussed the failures of "categorical thinking" and "behaviourism" to look at a living creature. Since communication involve more than 1 person, all debates regarding ANY communication "disorder" involve more than one group of people; how mild or severe the "disorder" [Sic] may appearently look like. There will be fundamental debates, relativity, and subjectivity regarding whom we consider as the "norm", the "healthy" one... which is the "disordered" one. To deny that using votes or consensus is to deny reality of the situation. Debates and arguments are not suitable things for me. I pray the editors to try to understand the situation with empathy (not sympathy)... I am spending time in spirituality, art, meditation, etc. in order to heal...

I pray the editors esp. on medicalization side, to accept the other viewpoints, and acknowledge the duality of the issue. It is not that there are some "pathological symptoms" and some "non-pathological symptoms". It is the same set of symptoms that can be described in 2 different ways. And even after adopting to a "Strength based model" than deficit centric, you will still be able to provide supports, services, and accommodations.

Regarding behaviourist "evidence based therapies", In a previous comment (I am too exhausted to locate it) ... I explicitly mentioned a few quotes from Hari Srinivasan, who is a mostly nonspeaking Autist. I also posed several questions regarding people who might be seen as severely biologically impaired from a majority viewpoint, but they adopted a social model approach. You may locate that comment for further understanding.

I ask for forgiveness from all editors from all the sides. I am not well. And I regret stepping into this debate. I can't take this tension and negativity. My mental health is rapidly deteriorating. Please forgive and exempt me from the negativity of this subject matter.

RIT RAJARSHI (talk) 19:52, 20 December 2024 (UTC)

Hey, sorry to see you dragged in again (but I appreciate @FactOrOpinion's good wishes here!) - I know how stressful this kind of thing can be, and I got your message that you didn't want to be part of this if you can help it. Thank you for your efforts to date, anyway! Oolong (talk) 20:02, 20 December 2024 (UTC)

just FYI... I am unable to be a part of it... brcause too much mental pressure, negativity, and public attentions/ privacy concerns. Its not like I have no willingness to say... but I am unable to bear the emotional cost of it. I ask for forgiveness from all the editors and scholars in concerned interestsRIT RAJARSHI (talk) 20:51, 20 December 2024 (UTC)

Participation is 100% optional. Do not worry about this. I hope that you feel better soon. WhatamIdoing (talk) 01:12, 21 December 2024 (UTC)

Honestly, as chaotic as it is and as a lurker who doesn't use wikipedia all that much, in defense of Димитрий Улянов Иванов and a few others, from my interpretation, I generally don't really see Димитрий Улянов Иванов (and other users more or less on his side) to be in the wrong here, and I certainly don't believe Димитрий Улянов Иванов in particular is intending to create much conflict, as opposed to just wanting the article to follow the scientific consensus, (though to be fair, that's certainly not to say I would like to see it as a bit less personally confrontational from certain users on all sides at times). I also know that many of the citations given to provide opposing perspectives really are questionable and their inclusion of which from my understanding feels only like it is done specifically to highlight neurodiversity and anti-psychiatry perspectives the editors identify with to contrast that of the mainstream medical model which is found by those, perhaps "partisan" users as "problematic" or "abelist", focusing mostly on that basis to bolster their own edits regardless of potential own conflicting POV, and less about the exact validity, or scientific credibility of their citations in relation to the rest of the articles data, including the rewritings and removals of cited material, even despite their ideological aims sometimes being directly in conflict with that of the current scientific consensus. So, in general, while I do agree there is a serious risk of the article becoming imbalanced and sharing undue weight because some people want to hold the article towards a certain slant, from my own point of view from some random lurker, I really only see it from one side mostly, although to give credit, I certainly don't think that in anyway means there hasn't been non-productive, non-constructive conflict from certain individuals of either side, so I do think seeking to rectify that is understandable, if perhaps obscuring that one sides objections to numerous, fairly recent and heavily conflicting additions/sources, is generally valid. GigaMigaDigaChad (talk) 17:58, 20 December 2024 (UTC)

I disagree with almost all of that, but let's leave that to one side.

I just wanted to flag up one thing, because I think it's important: I haven't seen a single person put up anything promoting anti-psychiatry perspectives. Have you? I might have missed something. But neurodiversity is a very separate movement from anti-psychiatry, much though they might share a few of the same concerns. In my experience anti-psychiatry folks are just as hostile to neurodiversity-based perspectives as anyone on the pro-psychiatry side! Oolong (talk) 20:07, 20 December 2024 (UTC)

Hi there, regarding Anti-psychiatry, I had understood them to be ideologically adjacent similar to the "mad pride" movement. If I was incorrect in my assessment then feel free to ignore that as a misunderstanding on my part. GigaMigaDigaChad (talk) 20:11, 20 December 2024 (UTC)

Hi, although there are similarities, there are also drastic differences between radical antipsychiatry, criticism of psychiatry/psychiatric survivor movements, mad pride, and neurodiversity movements. The philosophies or reasoning may sound apparently same, but there are differences both in the principle and history.

Antipsychiatry:

• It has been claimed at least a section of anti-psychiatry believers are also connected to "Church of scientology" and similar organizations. I don't know its truth.
• Anti-psychiatry groups often oppose any kind of label, including Autism.
• They are absolute abolitionists
• Some of the supporters also claimed to support various conspiracy theories.

Criticism of psychiatry + Psychiatric survivors moment

• It addresses issues like death of great literary [[Earnst Hemingway]] or similar negative outcomes.
• Critic of malpractice
• Critic of existing bad practices
• At least a section are reformists than absolute abolitionists.

Mad Pride

• Mostly based on opposition of normal-abnormal judgement.
• At least a subsection is against all therapy and medications.
• A subsection is seriously affected by psychiatric misunderstanding or existing bad practices.

Neurodiversity movements

• Very often framed from a personal and civil liberty aspect.
• Embraces diagnoses, self-identifications, and other non-derogatory labels instead of throwing them off
• Puts importance on various aspect of life, including education, learning, economics, etc.
• Embraces some form of therapy and medication, but more power goes to lived experience and insight of the patient party than imposed rapid-fire treatments.

The diffferent disabled communities also differ in their principles. Such as Autistic communities and Down Syndrome communities have many similarities as well as some differences in their principles.

It looks like many editors are confused about so many ideas those looks like they are closely related but has distinctive principles and histories. RIT RAJARSHI (talk) 20:37, 20 December 2024 (UTC)

Thanks for this.

My sense is that there's very little awareness of anti-psychiatry in the neurodiversity movement; where they interface at all, it seems critical to the point of hostility. Damian Milton debated with Sami Timimi one time about eight years ago, which showed that the latter had failed to understand many rather basic things about neurodiversity; Robert Chapman spends a fair chunk of Empire of Normality criticising anti-psychiatrists, especially those coming from a capitalist-friendly angle; the Mad in America blog (which I take to be broadly aligned with anti-psychiatry, but that's based on a surface reading) recently ran a short, hostile series on neurodiversity which, again, seemed to be based largely on misunderstandings.

Extremely unhelpful for anyone to assume that these movements are closely aligned. Oolong (talk) 10:28, 21 December 2024 (UTC)

Firstly, thank you Rit Rajarshi for taking your time to clarify a more nuanced explanation of the various sides, while there certainly is overlap. If I were to give a little more reasoning behind my previous edit.

I would however disagree with Oolong however from what I have researched of the movements, because the movements such as neurodiversity as well as other, older "anti-medicalist" model movements are for the most part, incredibly decentralized in nature with their own individual theorists and advocates who share their own unique perspectives and influences, and often may even conflict even with other adherents of their own movements on the specifics of the nature of disability (or a lack thereof).

Instead I think it would be much more generalizable to say these groups were all vague and broad social movements, who as mental-activist groups all have found themselves loosely adjacent to each other in contrast to the more medically recognized and "orthodox" health authorities who adhere to the "pathological/biomedical model", and as such have shared much cross-pollination as well as mutual critique between each others and only sometimes forming alliances between certain individual groups or factions rather than representative of the movement as a whole.

Perhaps me referring certain arguments as "anti-psych" or "something akin to anti-psych" could be seen as risking conflating the various different diverse movements and lumping them together which might risk misrepresenting the other movements, even when there is indeed some general overlap. Which is an argument I think is a perfectly reasonable argument and I do appreciate @RIT RAJARSHI for wanting to help take some of his time out to specify this. GigaMigaDigaChad (talk) 00:58, 22 December 2024 (UTC)

Just wanted to mention one more thing I felt like I should also mention. I do think in practice it is kinda hard to separate these movements too much either since they often don't have any central belief system and thus certain advocates from one field may borrow aspects from another (see the neurodiversity advocates cross-pollination with mad-pride) but I do think it's more professional and less personal and confrontational to not conflate the movements together as mostly equivalent despite that. GigaMigaDigaChad (talk) 01:05, 22 December 2024 (UTC)

Regards. RIT RAJARSHI (talk) 20:37, 20 December 2024 (UTC)

RIT RAJARSHI, please see WP:NOR, WP:NOT#ORIGINAL, and WP:NOT#FORUM. This talk page is for discussion of editorial improvement to the article content, not long-winded personal suppositions (some of which are wrong) about vague classes of people in an attempt to promote a particular viewpoint. If you are looking for Facebook, it's over there ↗ ...  — SMcCandlish ☏ ¢ 😼  05:42, 23 December 2024 (UTC)

If people are under misapprehensions about terms and positions relevant to this page, and they are affecting how they approach edits and Talk page discussions, I don't see how it would be inappropriate to correct these errors. Oolong (talk) 08:50, 23 December 2024 (UTC)

With all due good faith, I think at very worst I only made a minor blanket statement which I was quick to clarify. I don't think it's that big of an issue worth focusing on. GigaMigaDigaChad (talk) 11:44, 23 December 2024 (UTC)

It looks less like a forum diacussion and looks more like clarifying the audience on what they are talking about. 2409:40E0:1F:E636:8000:0:0:0 (talk) 17:53, 25 December 2024 (UTC)

Димитрий Улянов Иванов, Ó.Dubhuir.of.Vulcan, I have no experience with the Dispute Resolution Noticeboard (though I've occasionally browsed discussions there), and perhaps you don't either. My understanding is that the moderator is waiting for each editor to explicitly say "whether you would like to try moderated discussion (mediation) in order to resolve content disputes," where that includes agreeing to the rules the moderator establishes (some already on the page, some perhaps added later). You might find it useful to read the usual DRN rules, one of which is to check back on the DRN page at least every 48 hours. FactOrOpinion (talk) 15:51, 23 December 2024 (UTC)

Thanks for the information. Unfortunately, I do not have the time to consistently respond within 48 hours. Hopefully that is not a strict requirement. Димитрий Улянов Иванов (talk) 15:57, 23 December 2024 (UTC)

I suggest that you ask the moderator about that. FactOrOpinion (talk) 16:09, 23 December 2024 (UTC)

Just posting a heads up that Robert McClenon has posted a new comment to the Dispute Resolution Request for this article. He needs people to address his comment, so that he can assess whether DRN is a good venue for discussion of the conflict / whether discussion there is likely to be helpful. FactOrOpinion (talk) 18:52, 25 December 2024 (UTC)

My two cents worth

I have been off here and not editing for a very long time but I have been watching and this is not an easy situation to solve. It all boils down to the rules of Wikipedia and what constitutes a reliable source first and foremost. Now what we have here is a situation where reliable sources are supporting both sides of the argument. So in essence both should be included in the article and in a neutral manner. Now the minute we start talking about deleting stuff in what has been proposed, we are crossing the line into personal opinion or a political slant - and that has to be shut off pronto as NPOV has gone once that line is crossed. ND is a fluid subject and off wiki politics is causing this leading to an abundance of sources - some of which are not reliable (blogs are a great example). A lot has changed since the DSM-IV and balance is being lost in the shuffle as people (not necessarily those involved here) push certain interpretations that might be right but need sources. It's a very touchy subject that needs outside help and the DR should help if everyone decides to get involved. Wikipedia is an encyclopedia. Never forget that. Let's get this balanced on the sources. Not everyone will be happy with the result but if the sources say this AND that, it is what we go with. That is what an encyclopedia should be. Aspie Lover (talk) 01:12, 21 December 2024 (UTC)

Right! The extremely tricky thing is getting the balance right, and I haven't found anything in Wikipedia's guidelines which comes close to resolving the question of how to do that in a dispute of this specific nature. Hence the many open questions in my essay about all this...

The only bit I'm not sure about in what you've posted is about deleting stuff - I'm not sure how to interpret this, and my perspective is that the main autism entry is at least 2-3000 words longer than it should be, while also missing many important subtopics that should clearly be in; we really need to make some collective calls about what needs to go. It does help that there is currently a lot of content which ought to be brought down to summary length because there are already separate articles covering those topics extensively, though. Oolong (talk) 10:36, 21 December 2024 (UTC)

Both the 'medical' and 'neurodiversity' viewpoints on autism admit that there is a difference in brain architecture and function between autistic and allistic people and that these affect behaviour and sensory reactions to stimuli. Both recognise that genetic and environmental influences are important facets of the etiology of autism. It is the interpretation of these facts where difference lies. The medical paradigm views autism as a pathology, with symptoms and deficits - the description of which can, quite easily, stray into being offensive to many autistic people. The neurodivergence paradigm sees autism as part of he natural variation in humanity, with, what are otherwise described as symptoms and deficits being described as merely differential traits. Additionally, the neurodivergence view recognises that autism can confer advantages, such as heightened abilities to concentrate on a task (pathologised as 'hyperfixation'), an enhanced eye for detail and unusual abilities in problem solving.

In my view, any topic that has two major interpretations or theories being used to describe its core features, in simultaneous existence, requires that each interpretation is given as close to equal weight and coverage as possible. That is, if any respectable encyclopaedic treatment of the topic is envisaged. Both the medical and neurodivergence viewpoints have numerous reputable scholarly publications behind them, the only difference being that neurodivergence is a newer concept and therefore has fewer publications. Urselius (talk) 10:14, 23 December 2024 (UTC)

Wikipedia's official view is that neutral point of view (NPOV) means "representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views that have been published by reliable sources on a topic."

As far as I understand it, the central question here is around what counts as reliable sources, and how do we decide? Whose voices count towards this assessment?

I think it is worth saying that my perception is that some of the combativity has been motivated by anxiety about people doing things which nobody has expressed any intention to do. Perhaps it could be worth being quite explicit about what is actually being argued for, but it would be helpful to also have a clearer picture of what exactly people are afraid of happening here. I don't believe that anybody here is coming from an anti-science perspective, for example. I haven't seen any suggestion anywhere of people wanting to include things that are contradicted by empirical findings. I hope this can be borne in mind in future discussions.

While you suggest that when two major interpretations exist, each should be given "as close to equal weight and coverage as possible", this isn't quite how Wikipedia interprets neutrality: rather, "avoiding giving undue weight means articles should not give minority views or aspects as much of or as detailed a description as more widely held views or widely supported aspects."

However, it is not clear, as above, whose voices count towards this assessment. "Widely supported" among whom? One extreme position would be that only clinicians' voices should matter in this assessment. A slightly less extreme position would be that all relevant scientists (or other researchers?) should also count. I am sure that many other people would say that the view of the 'autism community' are the most important ones here: clinicians and researchers with relevant experience, yes, but also autistic people, their families, and people who work with them in non-clinical contexts. Another extreme position might be that only autistic people should really be important in deciding which sources are reliable.

Perhaps we can find a compromise that most of us can live with.

I suppose another approach would be to ask "what do scientists working in the field think about how much autistic people, for example, should be listened to about autism?" - I don't expect that we'll find definitive answers to that, though; I don't know that anybody has done a survey study asking researchers about this, but it is certainly true that many prominent autism researchers by now have spoken up about the importance of listening to autistic people, and how much they have learned about doing so. For example, "Making the future together: Shaping autism research through meaningful participation" (Fletcher-Watson et al 2018) calls for "the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them."

§

It is interesting to note that apparently a neutral point of view "neither sympathizes with nor disparages its subject (or what reliable sources say about the subject), although this must sometimes be balanced against clarity."

So, we should be avoiding language that disparages autistic people. That seems worth bearing in mind.

It is also good to notice that according to the Manual of Style - which mentions the preferences of patient groups as a motivation for these sorts of choices - "Words like disease, disorder, or affliction are not always appropriate."

There are questions here that Wikipedia's explicit policies and guidelines don't provide unambiguous answers for, but it seems clear to me that there is a strong case for toning down the pathologisation considerably, while ensuring that the scientific evidence that exists is fairly and accurately represented, and different viewpoints are represented in as balanced a way as possible. Oolong (talk) 18:21, 23 December 2024 (UTC)

The full spectrum of Asperger syndrome is not included in the diagnostic criteria for Autism spectrum disorder, but is exempted from the diagnostic criteria by a “grandfather clause”.

Many people used to think that the full spectrum of Asperger's Syndrome was encompassed by Autism Spectrum Disorder, and I used to think so too. But I learned something new from the official DSM-5 guide, or from resources such as the American Psychological Association; Committee to Evaluate the Supplemental Security Income Disability Program for Children with Mental Disorders; Board on the Health of Select Populations; Board on Children, Youth, and Families; Institute of Medicine; Division of Behavioral and Social Sciences and Education; and The National Academies of Sciences, Engineering, and Medicine.The diagnostic criteria for autism spectrum disorder in DSM-5 and DSM-5-TR are subject to a “grandfather clause,” which is the concept of an exemption from the diagnostic criteria. And the full spectrum of Asperger's Syndrome in DSM-IV is not included in the Autism Spectrum Disorder in DSM-5! However, there was an exemption called the “grandfather clause” for political and social reasons, as people with Asperger's Syndrome would lose social services if they lost their diagnosis, so the exemption included the full spectrum of Asperger's Syndrome.

First,

American Psychiatric Association(2023), Understanding Mental Disorders: Your Guide to DSM-5-TR®, American Psychiatric Association Publishing, 22-23. https://psychiatryonline.org/doi/book/10.1176/appi.books.9781615375370

"Social (Pragmatic) Communication Disorder

Social (pragmatic) communication disorder involves problems in the social use of verbal and nonverbal communication. . . .Because of the problems in social communication, this disorder might look like autism spectrum disorder, but those with this disorder do not have fixed interests or repeating behaviors. Those who in the past had a diagnosis of Asperger's disorder or pervasive developmental disorder not otherwise specified based on their problems in social communication might better fit this new diagnosis of social communication disorder."

second,

Committee to Evaluate the Supplemental Security Income Disability Program for Children with Mental Disorders; Board on the Health of Select Populations; Board on Children, Youth, and Families; Institute of Medicine; Division of Behavioral and Social Sciences and Education; The National Academies of Sciences, Engineering, and Medicine; Boat TF, Wu JT, editors. Mental Disorders and Disabilities Among Low-Income Children. Washington (DC): National Academies Press (US); 2015 Oct 28. 8, Clinical Characteristics of Autism Spectrum Disorder. Available from: https://www.ncbi.nlm.nih.gov/books/NBK332891/

"The diagnosis of ASD is typically made during childhood, based on comprehensive behavioral evaluations by specialists in child psychiatry or psychology or by those in behavioral and developmental pediatrics. ASD was not officially recognized until DSM-III, the third edition of the Diagnostic and Statistical Manual of Mental Disorders, in 1980 (APA, 1980; Kanner, 1943). The current version of the DSM introduced in 2013, DSM-5, is the first edition of the DSM to use the term “autism spectrum disorder.” This version does not distinguish subtypes such as “autistic disorder” or “Asperger syndrome,” and the diagnostic criteria specified in the DSM-5 for ASD are somewhat narrower than used previously. DSM-5 criteria require that a child has persistent impairment in social communications and interactions across multiple contexts as well as restricted or repetitive patterns of behavior, interests, or activities; that symptoms should present in early childhood and cause significant functional impairments; and that the impairments are not better explained by intellectual disability (APA, 2013).

DSM-5 introduced major change by eliminating subcategories and providing an overall approach to the diagnosis of ASD (Volkmar et al., 2014a). Concerns about individuals losing services prompted the addition of a “grandfather clause” in DSM-5 granting continued diagnostic assignment to cases previously diagnosed under DSM-IV."

third,

American Psychiatric Association (2018), APA Handbook of Psychopathology Volume 1: Psychopathology: Understanding, Assessing, and Treating Adult Mental Disorders, American Psychiatric Association Publishing, 44-45. https://www.apa.org/pubs/books/4311535

"What constitutes  a mental disorder is not a trivial decision because it  can have quite an important impact on significant  social and political issues (e.g., see Bayer & Spitzer,  1982, for a discussion of the controversy surrounding the inclusion of homosexuality in previous editions of the diagnostic manual).

For example, proposed for DSM–5 was a revision  to the criterion set for autism disorder that arguably  increased the threshold for diagnosis, leaving many  persons diagnosed with DSM–IV Asperger’s disorder  no longer qualifying for the special benefits, services, and support that had been available to them  before DSM–5 (Volkmar & McPartland, 2014). The  authors of DSM–5 therefore made an essentially  sociopolitical decision to allow persons who had  been diagnosed with autism using DSM–IV to continue to receive the diagnosis (American Psychiatric  Association, 2013, p. 51), even though they had  concluded that the DSM–IV threshold was wrong.  At some point, this grandfather clause will expire,  but presumably, the parents of the children who no  longer qualify for special services will not protest in  large part because they had never experienced the benefits of receiving the DSM–IV diagnosis."

Some people who are currently diagnosed with autism do not have autism according to the DSM-5 diagnostic criteria for autism spectrum disorder. They should have been diagnosed with social (pragmatic) communication disorder. However, because of the “grandfather clause” in the DSM-5 and DSM-5-TR, some people are exempt from the diagnostic criteria and have been diagnosed with autism. I don't know why the current editors of this article hid the “grandfather clause”, because from what I've seen, there's no way the editors of this article didn't know about it.

I just joined Wikipedia today to make this known, but I can't edit this article due to access restrictions. Autisticattitudes (talk) 05:45, 22 December 2024 (UTC)

Thanks for this valuable information, but it creates 2 more confusions.

• 1. You wrote "However, there was an exemption called the “grandfather clause” for political and social reasons, as people with Asperger's Syndrome would lose social services if they lost their diagnosis, so the exemption included the full spectrum of Asperger's Syndrome." So it looks like the consideration is once upon a time people accessed social service and supports will be allowed to "continue" the social service and support. But my question is, what would be the policy for new patients (Who are supposed to be diagnosed with "Social communication disorder" instead of Aspergers syndrome?) Would they qualify for disability support, social services, social support, etc. ? Note that the clinical profile of SCD and NVLD can include repeatitive behaviour, developmental delays, etc. IF NOT, then how they are justifying one group of people (Former Aspergers) getting supports and services, and newer people with same cognitive profile aren't getting the support and services?
• 2. Up to my knowledge, the former "Asperger syndrome" did not differed from other Autism spectrum disorder except that relatively normal or early language development and relatively unimpaired or specialized intelligence. It was distinguished from related conditions like SCD or NVLD from very begininning because it is "Syndromic" (Many symptoms together) than a few symptoms. What is the point of further splitting "Asperger syndrome" and telling only some part of it is Autism, and the other parts aren't? 2409:40E1:E:E5A0:8000:0:0:0 (talk) 07:39, 22 December 2024 (UTC)

This is my first time writing for Wikipedia. But I do know that Wikipedia is meant to be neutral.  The topic of discussion here is whether the material I imported can be cited in the current documentation. There is no reason to have a value judgment discussion. Autisticattitudes (talk) 08:32, 22 December 2024 (UTC)

Thanks for explaining why my questions may not be answered. I didn't mean to judge anyone. The logic behind grandfather clause appeared confusing, as I read it that it protects the formerly diagnosed Aspergers, but does not protect people with similar deficits or problems but only new to this planet or have not accessed a diagnosis YET. How does the authorities behind that granfather clause address this?

2409:40E1:3:4132:8000:0:0:0 (talk) 16:36, 22 December 2024 (UTC)

Autism diagnosis using DSM-IV is still in use today, so don't worry about that one.

See the following articles

"Likewise, an individual that would now have no diagnosis at all (because she meets neither the ASD criteria nor the SPCD ones), would still be diagnosed with ASD if she had a DSM-IV diagnosis of Asperger’s Disorder or PDD-NOS, for instance."

"More generally, one problematic aspect of the grandfather clause is that it extends the lifespan of some DSM-IV categories and thus creates two competing—and to a certain extent contradictory—diagnostic systems, both of which are currently in use (Smith et al., 2015, p. 2542). Such a situation is quite unique and certainly odd if compared to other psychiatric categories."

Amoretti, M. C.; Lalumera, E.; Serpico, D. (2021). "The DSM-5 introduction of the Social (Pragmatic) Communication Disorder as a new mental disorder: A philosophical review". HPLS. 43: 108. doi:10.1007/s40656-021-00460-0.

Autisticattitudes (talk) 21:50, 22 December 2024 (UTC)

Issues in recent editing by Oolong

Oolong has been repeatedly changing the third paragraph on the lede, and I'd like to address the many problems with their most recent edit in further detail than the edit summaries permit.

The edit is clearly ideologically motivated for it casted the story in the form of a sporting event with (at best) evenly matched competitors. The citations of a trade book, and an online PDF document (not of a peer-reviewed journal) are contrasted against the international scientific consensus as if both views had equal merit. The neurodiversity movement and their idea that ASD is an invalid disorder was positioned as an "alternative perspective", with the wording rephrased in a more convoluted way than the original to convey much of the underlying same point while repeating ontologies, such as neurodiversity. Moreover, due to a sort of selection bias, the views of scientific articles refuting the neurodiversity movement were significantly oversimplified, as much of the contextualising detail was erased.

This skewed the narrative by making the neurodiversity movement seem more universally accepted or less contentious than it actually is within the scientific community. Such attempts at balance give readers the false impression that there is substantial scientific disagreement over whether ASD is a real disorder.

I am deeply concerned with the editing by Oolong, as it increasingly appears that factors other than the totality of evidence is influencing their deliberations. Strangely, "guideline developers" was also changed to "diagnostic manuals", but the citations they were presumably referring to, in the context, represent guideline developers and not diagnostic manuals.

The original paragraph was worded with far more due weight. The universal scientific classification is mentioned, as is the perspectives of the Autism Rights Movement, and some researchers, while the opposing scientific viewpoint is also mentioned. This is written in a way that provides a comparable degree of detail to both positions, while not overstating the importance of one or the other.

On a final note I'd like to address this user's grammatical concern about including "other scientists" in the paragraph. Because "and some researchers" is mentioned in parentheses for the former viewpoint, that phrase is contextualised and thus grammatically valid. Now, if one perceives "scientists" and "researchers" as terms incompatible with eachother, the reasonable step of action would not be removing the detail. The two words are interchangeable, so one of the words could be consistently used instead. Димитрий Улянов Иванов (talk) 21:24, 24 December 2024 (UTC)

A few points:

• Most readers won't know what a guideline developer is, so a link would be helpful.
• I disagree that scientist and researcher are always interchangeable, and I suggest that only researcher be used in this article. Also, these labels should not be used to describe any individual unless their research area is autism. There might be some reason to say that Alice Expert says that autism is best understood as a medical condition, but if her field is astronomy, then we should describe her as "Astronomer Alice Expert, not "Scientist Alice Expert" or "Researcher Alice Expert", because calling her a scientist could mislead people into believing that Alice is an autism expert.
• The lead needs to reflect the body, so if the whole article is "wrong", then you should fix the body of the article first, and the lead last.
• But if you're serious about using Wikipedia:Dispute resolution noticeboard#Autism to address concerns in the article, then you shouldn't be pushing to get Wikipedia:The Right Version on the page right now.

WhatamIdoing (talk) 22:52, 24 December 2024 (UTC)

1. Not so sure I'd agree with that. People are as about as aware of the meaning of guidelines, and a developer of something, as they are about public health authorities. In either case, it wouldn't necessitate changing it to "diagnostic manuals".

2. I didn't say they are always interchangeable, but certainly in this context they are. Following your reasoning, we can't use "researcher" either because someone can be a "researcher" in astronomy making claims about ASD and we therefore would risk implicitly overrepresenting their expertise. This is a nonissue because the citations pertain to scientists researching autism.

3. I have never said nor implied the whole article is wrong at all. I was merely reverting a problematic edit, which certainly does not reflect the due weight provided in the body of the article.

4. I was restoring the original wording, not applying my own edits. You should really be directing that innuendo to Oolong for making article changes despite initiating the dispute resolution request. Moreover, we haven't heard back anything as of yet but I have been generally abstaining from replying to discussions on this talk page, despite others commenting on my replies. Димитрий Улянов Иванов (talk) 00:47, 25 December 2024 (UTC)

Semi-protected edit request on 25 December 2024

Existing TOP section:

"Autism spectrum disorder[a] (ASD), or simply autism, is a neurodevelopmental disorder characterized by repetitive, restricted, and inflexible patterns of behavior, interests, and activities; deficits in social communication and social interaction; and the presence of high or low sensory sensitivity. A formal diagnosis requires that symptoms cause significant impairment in multiple functional domains, in addition to being atypical or excessive for the person's age and sociocultural context.[11][12]"

Kindly reframe it as:

Autism, Autism spectrum condition (ASC), Autism spectrum disorder (ASD), or Autism Spectrum (AS) is a set of neurodevelopmental conditions, which have been described variously as a disorder, a condition, a valid human neurotype, and a socio-cultural misfit. No two Autistic persons are same, differing in their abilities and inabilities in multiple dimensions, and usually show a spikey or highly uneven cognitive profile. Many Autistics are capable of reading, writing, speaking clearly, or taking part in logical arguments, while having unnoticed deficits in working memory, information filtering, gross or fine motor skills issues, executive functions, sensory issues, trouble making eye contact or reading facial expressions etc. On the other hand, in some Autistics the deficits or differences can be immediately visible. In such cases the strengths might be unnoticed or ignored. Although an Autistic person may fall somewhere in between- and described better through a multidimensional approach than a unidirectional or linear "mild" vs "severe" categorization. Autistics often use repeatitive behaviour as a means of coping mechanism, and often requires structure and predictability to cope up. Autism is sometimes classified as a hidden disability or an invisible disability, as its features could be not immediately noticeable, and in some cases highly masked or camoufledged. Autistics may differ in the amount and nature of support they need in order to thrive and excell. Autism has close overlaps with specific learning disabilities (Such as dyslexia or dyscalculia), Personality disorders (Schizoid personality disorder, Pathological Demand avoidance), etc. that makes it often hard to differentiate from other psychological diagnoses. Autistic people are valuable member of society, regardless of their talents or impairments. 2409:40E0:1F:E636:8000:0:0:0 (talk) 18:42, 25 December 2024 (UTC)

2409:40E0:1F:E636:8000:0:0:0, rather than acting on this edit request right now (or someone launching into a discussion of why they're not going to act on it), I suggest that you copy it into the First statements by editors (Autism) section on the Dispute Resolution Noticeboard. I think it would be better to pause discussion of the lead here, and instead discuss the lead there, since the possible moderator has said "If an editor thinks that the article should be revised to reflect multiple viewpoints, I will ask that they provide a revised draft of the lede section." I'm not sure whether you also like alternative text in the rest of the lead, but if so, you can add that to your DRN response.

@WhatamIdoing, a quick question re: DRN: in the Summary of dispute section, each participant was told "Please keep it brief - less than 2000 characters if possible, it helps us help you quicker." Does that apply to all comments posted at the DRN? And if so, am I remembering right that an editor can ask for an additional allowance and needs to do so before posting a longer comment? I'm asking because the lead of the Autism article is currently longer than many article leads, so "a revised draft of the lede section" might be more than 2000 characters (I'm not even sure how to count characters in WP comments, especially if they include references). Thanks, FactOrOpinion (talk) 19:35, 25 December 2024 (UTC)

User:FactOrOpinion - The notation to keep introductory statements to less than 2000 characters applies to introductory statements, such as Summary of Dispute by FactOrOpinion, which are entered before a volunteer accepts the case. Thereafter the moderator specifies any rules. If I ask for a draft rewrite of a section, in particular, it may be the same length as the original section or longer. I think that I will change the 2000-character objective to 300 words, but that is not the original question. After a moderator accepts a discussion, the moderator makes the rules, and should use common sense, which includes having reasonable length limits. Robert McClenon (talk) 05:47, 26 December 2024 (UTC)

I think that they often process larger changes in small chunks. I don't think that the 2,000-character recommendation is a firm limit, so you don't need to request an extension. However, in practice, you should keep the comments as short as possible. For example, try "I think we should change X to Y, because this will more accurately represent the POV described in these sources.[1][2][3]" and avoid saying the same thing in 10x as many words. WhatamIdoing (talk) 02:15, 26 December 2024 (UTC)

I am declining the change request for three reasons:

• The rewrite of the lede section is under discussion at DRN.
• The rewritten lede section has no references.
• The last sentence is not encyclopedic because it is not summarizing existing knowledge, but is an opinion. It is morally correct, but Wikipedia is not a pulpit.

The unregistered editor is strongly advised to register an account if they wish to take part in dispute resolution. Robert McClenon (talk) 04:40, 26 December 2024 (UTC)