Journal of Child Psychology and Psychiatry 64:5 (2023), pp 834–838 doi:10.1111/jcpp.

13802

Commentary: Best practices and processes for

assessment of autism spectrum disorder – the
intended role of standardized diagnostic instruments
Somer L. Bishop,1 and Catherine Lord2
1
Department of Psychiatry and Behavioral Sciences and Weill Institute for Neurosciences, University of California,
San Francisco, San Francisco, CA, USA; 2Semel Institute for Neuroscience and Human Behavior, University of
California, Los Angeles, Los Angeles, CA, USA

Given the relatively low recognized prevalence of differs significantly from labs or other medical tests
autism prior to 2000, and the extreme phenotypic that can be “ordered,” with results later interpreted
heterogeneity of the condition, researchers have long by the diagnostician. With a behaviorally defined
recognized the value of combining samples from condition, such as ASD, where conceptualizations of
different sites or replicating study results across what is or is not characteristic of the condition
modestly sized samples. However, because autism is change over time, and exclusive reliance on self-
a behaviorally defined condition, diagnostic prac- report measures is not possible—the administration
tices may vary widely between practitioners, prompt- of diagnostic tests simply cannot be divorced from
ing concerns about how autism cases are defined. the clinician’s expertise and understanding of that
Even before autism was formally recognized as a condition.
DSM diagnosis, major efforts were undertaken in the While standardized ASD diagnostic instruments
1960s and 1970s to establish standard diagnostic were designed to be used by individuals well-versed
criteria to facilitate the accurate identification of in ASD diagnosis, even experts benefit from system-
patients for epidemiological or other larger-scale atic procedures for collecting information. Studies
studies (Evans, 2013; Lotter, 1966; Rutter, 1966). show that quick diagnostic judgments by expert
Later, in the 1990s–2000s, the development of clinicians lead to high rates of false positives and
standardized diagnostic and screening practices false negatives (Gabrielsen et al., 2015). Importantly,
became a focus of clinical research (Gillberg, 2013; the contexts that we create for hearing about or
Lord, Elsabbagh, Baird, & Veenstra- directly observing behaviors may drastically affect
Vanderweele, 2018; Rosen, Lord, & Volkmar, 2021). the information that we obtain (Lord, Rutter, &
As the pace of autism research accelerated, DiLavore, 1999). Thus, when clinicians are idiosyn-
interest in characterizing participants using similar cratic or overly hasty in their information-gathering
methods propelled widespread adoption of standard- efforts, the potential for error and bias increases. In
ized instruments such as the Autism Diagnostic the observational context, people behave differently
Interview (ADI; Le Couteur, 1989)/Autism Diagnos- in a room full of toys than in a room with only
tic Interview-Revised (ADI-R; Rutter, Le Couteur, & furniture. Children behave differently when adults
Lord, 2003), and the Pre-linguistic Autism Diagnos- attempt to engage them directly in play or conversa-
tic Observation Schedule (PLADOS; DiLavore, Lord, tion, as opposed to when they are left to play on their
& Rutter, 1995)/Autism Diagnostic Observation own. People also behave differently when faced with
Schedule (ADOS; Lord, Rutter, DiLavore, & tasks that are developmentally appropriate versus
Risi, 2001)/Autism Diagnostic Observation those that are too advanced or too juvenile. There-
Schedule-2 (ADOS-2; Lord et al., 2012) in research fore, “The goal of the ADOS-G is to provide presses
protocols. The original intent of these tools was to that elicit spontaneous behaviors in standardized
formalize the procedures through which clinicians contexts. Structured activities and materials, and
and researchers gather information about autism- less structured interactions, provide standard con-
related symptoms in patients referred due to concern texts within the ADOS-G in which social, communi-
for autism spectrum disorder (ASD), thus providing cative, and other behaviors relevant to the
standardized methods for eliciting descriptions or understanding of PDDs are observed” (Lord
observations of behaviors that are diagnostically et al., 1999, p. 205). In addition, reports from
relevant. Moreover, recognizing that the process of parents and caregivers about the developmental
administering and scoring these tools is at least as history and pervasiveness of ASD-related behaviors
valuable as the scores they yield, the ADI-R and are also essential to the diagnostic assessment. The
ADOS were designed for use by diagnosticians. This ADOS provides a relatively brief observation, during
which information about certain behaviors, such as
Conflict of interest statement: See Acknowledgements for full
restricted, repetitive, and sensory interests or behav-
disclosures. iors (RRBs), or “developing and maintaining

Ó 2023 The Authors. Journal of Child Psychology and Psychiatry published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent
Mental Health.
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and
distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
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doi:10.1111/jcpp.13802 Best processes for assessment of ASD 835

relationships,” may be difficult to elicit. Further, pandemic when in-person testing was prohibited or
RRBs significantly decrease with age (Bishop, Rich- severely restricted (e.g., requiring PPE; Spain
ler, & Lord, 2006; Esbensen, Seltzer, Lam, & et al., 2022; Wagner et al., 2021; Zwaigenbaum
Bodfish, 2009; Uljarevi
c et al., 2022) and may et al., 2021). During this time, clinicians adapted the
manifest differently in some girls with ASD (Kaat use of existing tools and developing new tools (Dow
et al., 2020). Therefore, relying on families to et al., 2022), so that diagnostic assessments could
spontaneously report behaviors that they consider continue, thus providing another example of how
repetitive, as opposed to systematically collecting a clinicians must modify specific assessment proce-
detailed history of behaviors that a clinician could dures depending on the circumstances.
appropriately conceptualize as examples of RRBs, Here we come to the critical point: best practice
risks missing diagnostically critical symptoms in processes for diagnostic assessment exist indepen-
certain patients. dently of the use of any single tool. Standardized
Although standardized instruments offer several diagnostic instruments were developed to aid the
potential advantages in the diagnostic assessment of expert, to structure the assessment to ensure that
autism, which specific tools can or should be used diagnostically relevant information would be avail-
vary according to several factors. For example, the able for making diagnostic judgments. Never were
ADI-R and ADOS were not developed for individuals they meant to prevent access to appropriate services.
with severe vision, hearing, and/or motor impair- And yet, healthcare delivery and funding systems are
ments, nor are they valid for individuals with increasingly trying to mandate the use of specific
profound intellectual disabilities (Lord, Luyster, tools in the diagnostic assessment of ASD. This can
Gotham, & Guthrie, 2012). Because individuals with be extremely damaging in situations when standard-
these conditions make up a minority of individuals ized instruments cannot be validly administered. In
referred for ASD diagnostic assessment and require addition, blanket requirements directly contradict
additional specialized assessment procedures best practice recommendations for individualizing
(Thurm et al., 2021), they were not represented in assessment procedures.
the original validation samples. However, compared A related problem that comes about with mandat-
to the general population, rates of autism are higher ing the use of specific tools is when systems require
in blind and deaf individuals and those with severe/ that an individual’s scores exceed ASD “cutoffs” in
profound intellectual disabilities (Rosenhall, Nordin, order to access appropriate clinical services. As
Sandstrom, Ahlsen, & Gillberg, 1999; Rydzewska indicated above, an original goal of standardized
et al., 2018). Thus, to say that they cannot be ASD diagnostic instruments was to provide
diagnosed with autism is both inaccurate and researchers with a way of more validly classifying
clinically irresponsible. ASD “cases.” Instrument thresholds for yes/no ASD
Special circumstances, such as the examples classification were identified to maximize diagnostic
above, require modifications to typical assessment validity—as measured by agreement with best-
procedures. Adaptations of existing instruments for estimate clinical diagnoses of ASD. However, such
use in special populations are beginning to appear, thresholds are never capable of yielding perfect
but we must be careful about implementing new sensitivity or specificity values, and they are highly
tools or procedures that have been developed based dependent on the samples from which they were
on anecdotal observations of a particular group (e.g., derived. This means that there will always be
females), and that may only reflect the opinions of individuals with ASD whose scores fail to meet
one or a few clinicians. Instead, the field will benefit cutoffs, as well as individuals without ASD whose
from the development of empirically derived tools, scores incorrectly exceed cutoffs. As with any tool,
based on careful and systematic research, which are clinicians must be empowered to make an overall
more appropriately targeted and have improved best-estimate clinical diagnosis, using the process of
diagnostic validity for certain groups of patients standardized test administration, regardless of
(Bal et al., 2020; Phillips et al., 2022; Wright instrument-derived ASD/non-ASD classification.
et al., 2022). Modifications to typical assessment This is especially relevant in light of increasingly
practices are also required when a child or their complex clinical referral populations, comprised of
family do not speak the same language as the individuals with ASD with less prototypical ASD
diagnostician, as standardized instruments cannot symptom presentations, as well as individuals
be validly administered via a translator, or when without ASD with various psychiatric and medical
there is no living parent/caregiver who is familiar diagnoses, all of whom may be likely to receive scores
enough with the individual’s developmental history very near (and on either side of) the established
to complete an interview like the ADI-R. However, the cutoffs (Elias & Lord, 2022; Klaiman et al., 2022;
overall goals of the assessment—to collect informa- Lord & Bishop, 2021; McDonnell et al., 2019).
tion needed to make diagnoses and inform treatment Ironically, attempts to require the administration
planning—remain the same. The importance of of standardized instruments like the ADOS-2 are
flexibility in ASD diagnostic procedures became a likely rooted in a shared goal of enhancing the
focus of several papers during the COVID-19 validity and reliability of diagnoses. For example,

Ó 2023 The Authors. Journal of Child Psychology and Psychiatry published by John Wiley & Sons Ltd on behalf of Association for
Child and Adolescent Mental Health.
 14697610, 2023, 5, Downloaded from https://acamh.onlinelibrary.wiley.com/doi/10.1111/jcpp.13802 by Cochrane Colombia, Wiley Online Library on [12/04/2024]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
836 Somer L. Bishop, and Catherine Lord J Child Psychol Psychiatr 2023; 64(5): 834–8

requiring the ADOS was probably intended to serve treatment or service that is always needed or always
as a proxy for whether the assessment included a effective in supporting people with autism (Thapar,
direct observation, which is central to best practice. Cooper, & Rutter, 2017). Thus, the autism diagnosis
Relying exclusively on parent-report measures is itself is just a start. Along with the diagnostic label,
likely to result in a high number of false positives individuals with autism and their families have a
(and false negatives) (Havdahl et al., 2016; Hus, right to expect to understand why they are receiving
Bishop, Gotham, Huerta, & Lord, 2013), meaning such a diagnosis, and this may vary considerably
that systems could risk serving and paying for large across individuals. Moreover, given the extreme
numbers of children who did not have autism if the heterogeneity that characterizes this population,
direct observation was not required. Further, when the ASD diagnosis itself is less likely to guide
the ADOS was initially developed, it was adminis- treatment planning or provide meaningful informa-
tered by people with extensive training in autism. tion about prognosis, than information about an
This is reflected in the validity data, which were individual’s profile of cognitive, language, and adap-
collected by experienced and research reliable exam- tive behavior skills, as well as medical and psychi-
iners, and which show high levels of sensitivity and atric symptoms. Thus, families also have the right to
specificity using expert clinical diagnosis as the expect that recommendations for services reflect
reference gold standard. Therefore, it was likely individual differences in strengths, difficulties asso-
hoped that requiring an ADOS would ensure that ciated with autism, and also difficulties that may be
the diagnosis was made by an expert. related to other commonly occurring conditions with
Sadly, the shared goal of enhancing diagnostic autism, such as intellectual disability, ADHD, or
assessment practices by encouraging the use of depression. Each treatment recommended should be
standardized instruments appears to have been lost at sufficient scope and intensity to fully address the
in translation. Systems have come to focus too much symptoms targeted.
on scores from certain tools, and too little on what As a field, we must find ways to hold on to best
can be gained from the actual administration and practices for diagnostic assessment: applying stan-
scoring of those tools. Moreover, requirements that dardized, comprehensive methods for collecting infor-
certain tools, such as the ADOS, be used in mation about current and past social communication
diagnostic assessment have resulted in large groups deficits and RRBs across settings, cognitive and
of professionals who are technically trained on the language abilities, adaptive behavior, and genetic,
ADOS (e.g., after completing a 2-day introductory medical, psychiatric, and behavioral conditions—
training), but who lack broader training in assess- while also understanding how to be flexible, especially
ment and differential diagnosis of autism and other when working with special populations who were
neurodevelopmental disorders. Such professionals excluded from or under-represented in instrument
may be inappropriately emboldened to diagnose or validation samples. There are many situations in
rule out autism because of the overemphasis on test which the use of any given tool might not be possible.
results, rather than assessment processes. This is As such, requiring the use of specific tools, without
especially troublesome given that ADOS scores exception, is discriminatory and damaging. More
obtained from administrations by minimally trained importantly, no tool or combination of tools can make
and/or nonresearch-reliable examiners are highly up for a lack of clinical expertise in autism and related
unlikely to work as well as the validity data would disorders. The negative consequences of misdiagno-
suggest. On the other hand, attempts to efficiently sis, resulting in part from inappropriate use of
train large numbers of providers on autism diagnos- standardized instruments, have been repeatedly
tic instruments result directly from massive short- highlighted by clinicians, researchers, and individ-
ages of expert clinicians, and numbers of uals with ASD and their families as a major challenge
assessment referrals that far exceed any clinic’s for our field at this time. Thus, the responsibility lies
capacity. Further, while brief training courses are by with all of us to ensure that we are appropriately using
no means adequate to prepare anyone to administer any tool we choose to employ and to not allow systems
these instruments with fidelity, the alternative is to to force practitioners to behave unethically or practice
offer no formal training at all, which is unlikely to outside of their scope. These systems must know that
dissuade professionals interested in using the clinicians make diagnoses, not instruments. It is the
instruments from purchasing and using them on experts, who know how to apply best practice pro-
their own. In the end, professional ethics codes cedures for assessment beyond diagnosis, whom we
dictate that we practice within our competency, are desperately lacking. This is where we must focus
including only making diagnoses that we are trained our resources and training efforts moving forward.
to make.
Beyond diagnostic accuracy, we serve families
better and more equitably when we prioritize the Acknowledgements
assessment process itself. The reality is that, though C.L. receives royalties from sales of the ADI-R and
an autism diagnosis is often a significant event in a ADOS/ADOS-2. S.L.B. receives royalties from sales of
child or adult’s clinical “life,” there is no one the ADOS-2.

Ó 2023 The Authors. Journal of Child Psychology and Psychiatry published by John Wiley & Sons Ltd on behalf of Association for
Child and Adolescent Mental Health.
 14697610, 2023, 5, Downloaded from https://acamh.onlinelibrary.wiley.com/doi/10.1111/jcpp.13802 by Cochrane Colombia, Wiley Online Library on [12/04/2024]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
doi:10.1111/jcpp.13802 Best processes for assessment of ASD 837

University of California, San Francisco, San Francisco,

Correspondence CA, USA; Email: [email protected]
Somer L. Bishop, Department of Psychiatry and Behav-
ioral Sciences and Weill Institute for Neurosciences,

Key points
 When used appropriately, standardized autism diagnostic instruments may inform and enhance diagnostic
decision-making and treatment planning.
 These instruments were developed to support and enhance expert clinical judgment, not to replace it.
 Use of specific instruments is not appropriate in all situations. Instrument development work should focus on
creating and adapting tools, based on sound research, that can be efficiently administered to diverse patient
populations by a range of providers.
 Professionals involved in the diagnostic assessment of autism must be trained in best practice methods for
differential diagnosis (not just in the use of specific instruments), including how to individualize test batteries
appropriate to each particular situation.

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Child and Adolescent Mental Health.