Asd and Substance Use Disorder
Asd and Substance Use Disorder
Asd and Substance Use Disorder
a n d S u b s t a n c e U s e D i s o rd e r
A Dual Diagnosis Hiding in Plain Sight
KEYWORDS
Autism spectrum disorder Substance use disorder Prevention Treatment
Constructed narrative Cognitive dissonance
KEY POINTS
Individuals diagnosed with autism spectrum disorder (ASD) have double the risk of devel-
oping a substance use disorder (SUD) compared with the general population.
Many factors can contribute to the development of co-occurring ASD and SUD. However,
the research and literature addressing this particular comorbidity is scarce.
Evidence-informed prevention, screening, and treatment approaches are possible when
providers from both the ASD and SUD communities collaborate to adapt protocols.
Constructed narratives associated with both disorders may be at the root of the scientific
and medical communities’ disinterest in this life-threatening comorbidity.
Clinicians should always screen for SUD in cognitively able individuals with ASD and, if
present, develop appropriate treatment plans to address the comorbidity.
INTRODUCTION
Substance use disorders (SUDs) are a problem for adolescents and young adults with
autism spectrum disorder (ASD). A quantitative study drawn from Swedish registry
data showed that individuals diagnosed with autism spectrum disorder (ASD) have
double the risk of developing an SUD compared with the non-ASD control group.1
This finding is in contrast with the prevailing wisdom that SUDs are not as common
in ASD, possibly because of ASD providing protective factors for the comorbidity.2
Therefore, screening individuals with autism for SUD is not the general practice. There
is a dearth of general epidemiologic research and treatment studies for the popula-
tion.3 There is no clinical evidence explaining the lack of attention to the dual diagnosis
of ASD and SUD. This disconnect may be understood by considering the distinct
This article originally appeared in Child and Adolescent Psychiatric Clinics, Volume 29, Issue 3,
July 2020.
Department of Psychiatry, University of North Carolina School of Medicine, Chapel Hill,
NC, USA
* UNC WakeBrook Addiction and Detox Center, 107 Sunnybrook Road, Raleigh, NC 27610.
E-mail address: [email protected]
culturally constructed narratives for ASD and SUD: the ASD narrative depicts the in-
dividual as innocent and deserving, whereas the narrative of SUD depicts an individual
as degenerate and unworthy. Allowing for a relationship between ASD and SUDs also
sanctions the intersection of the stereotypes created by their associated narratives,
leading to cognitive dissonance. Clinicians should overcome this bias, screen individ-
uals with ASD for SUD, provide appropriate treatment, and conduct research into this
prevalent and life-threatening comorbidity. Despite minimal research and literature
addressing a dual diagnosis of autism spectrum and substance use diagnoses, there
are recommendations for preventive strategies, adapted assessments, and treatment
possibilities.
SUD has been considered rare in individuals with ASD.1,2 Prior studies have reported
rates from 0.7% to 36% and have had significant limitations.3 Drexel University Na-
tional Outcomes Indicator Report: Transition to Adulthood’s section on high-risk be-
haviors reports about a third of respondents having at least 1 drink of alcohol and
8% using illicit substances in the past 30 days.4 No follow-up questions were asked
regarding frequency or quantity of consumption. The report’s dataset, culled from in-
dividuals seeking or mandated to seek special education services, may omit precisely
those individuals with ASD most at risk for developing an SUD, those who have been
successfully mainstreamed and no longer seek or require special education but still
may not fit in. As Clarke and colleagues5 noted in their study, individuals with ASD
used alcohol to help ease social anxiety and to facilitate social interaction. Butwicka
and colleagues1 had a broader dataset, Swedish population registries, to identify a
2-fold higher risk for substance use–related problems in individuals with ASD without
attention-deficit/hyperactivity disorder (ADHD) or intellectual disability. ASD with
ADHD conferred the highest risk in the sample.
Shared Comorbidities
Although there is scant literature addressing a dual diagnosis of SUD and ASD, a
connection between the 2 disorders would make logical sense. Individuals with
depression, anxiety, ADHD, and a history of witnessing or experiencing violence
(such as being bullied) are at a significantly higher risk for developing an SUD, and in-
dividuals with ASD have appreciably higher rates of depression, anxiety, ADHD, and
victimization from bullying than the general population.4,6–8
Despite limited evidence-based research linking ASD and SUD, it is not difficult to
make the connection that people with autism would be at greater risk for developing
an SUD because of the well-documented and studied comorbidities associated with
both autism and SUDs.
Behavioral Connections
There are other connections between substance use and autism, such as behavioral
connections. The author and self-advocate Maia Szalavitz9 addresses the behavioral
associations in her book, The Unbroken Brain: “It seems that the same regions that
gave me my intense curiosity, obsessive focus, and ability to learn and memorize
quickly also made me vulnerable to discovering potential bad habits and then rapidly
getting locked into them.”9(p17) Characteristics of ASD include repetitive, compulsive,
obsessive behaviors and special interests. The same could be said for SUD. With
autism, the repetitive behaviors manifest themselves in movements such as rocking
or stimming, but they can also present as ritualistic behaviors.10 SUD also has
Cooccurring ASD and SUD 37
Self-Medication
Another connection between ASD and SUD is self-medication. The book Asperger
Syndrome and Alcohol: Drinking to Cope hypothesizes that it was the coauthor
Matthew Tinsley’s anxiety and undiagnosed ASD that led to his alcohol misuse.12 On-
line, there are hundreds of posts and video testimonials by people with ASD who use
substances. The content of these postings suggest that individuals with ASD use
alcohol or illicit substances to relieve anxiety, increase social empathy, ease social
communication, reduce stress, and dampen sensory stimulation.13–15 Tinsley and col-
leagues12 describe alcohol as a “numbing device which enables tolerance, integra-
tion, acceptance and flexibility, which the person with AS [Asperger syndrome] may
not naturally possess.”12(p22)
Tinsley and colleagues,12 Szalavitz,9 and many online posters report that substance
use is also a means of coping with an undiagnosed/misdiagnosed developmental dis-
order. Some patients suggest that a lack of a proper diagnosis was the cause of their
substance use rather than the traits and comorbidities related to their ASD. However,
Butwicka and colleagues’1 findings, along with anecdotal evidence from online fo-
rums, suggest it is not only those undiagnosed/misdiagnosed that self-medicate.
Although the evidence is for the most part anecdotal, it is clear that individuals diag-
nosed early in life may also seek substances to self-medicate uncomfortable aspects
of their autism. “I’m a 20 year old guy. Ever since I was about 14 I have used all kinds of
drugs (marijuana, Adderall, pain killers) to help me feel better about having this ‘disor-
der’. For a 4 year span I became addicted to pain killers. They make me feel ‘normal’
and help me forget about being an Aspie.”16
I did go to a normal high school and I couldn’t cope with it. It was too big and I
didn’t really get on with anyone in my class. I remember being in the corridor
when the bell went for another lesson and everyone just came out at once and
went to go to their next room and I thought “God, this is absolutely horrific.” It
[high school] was just really, really overwhelming.19
38 Kunreuther
One ASD blogger wrote that in high school the only crowd that would accept him
were the people who used marijuana and other illicit substances because they were
more tolerant of his differences. “I was friendless through high school, but when I
started meeting people who smoked cannabis I found it much easier to make friends
with them. Many of them also used psilocybin and LSD, so they were used to being
around people with much weirder behavior than mine.”20
Biological Connections
Various studies seem to indicate biological connections between the 2 diagnoses.
There is research addressing genetic connections as well as overlapping neural cir-
cuits and molecular signaling pathways in both autism and SUDs. For example, in But-
wicka and colleagues1 study, parents and siblings of individuals with ASD also had an
increased risk for developing an SUD. Patrick Rothwell21 released an article describing
a host of neurologic similarities between ASD and SUD, such as common elements of
circuitry supply and the pathophysiology of both autism and addictive behaviors.
Research addressing underlying dopamine and oxytocin dysregulation in individuals
with either diagnosis indicate that individuals with autism or addiction disorders
may respond to rewards differently than the general population.22
CONSTRUCTED NARRATIVES
Constructed Narrative and Its Impact on Health Care
A narrative is a way of giving meaning to experience by reconciling inner beliefs with
outer observations. An active blending of personal and cultural resources is at the root
of narrative. Jerome Bruner27 offers that narrative is a means of organizing experience
and constructing reality. He goes on to explain, “Narratives, then, are a version of re-
ality whose acceptability is governed by convention and ‘narrative necessity’ rather
than by empirical verification and logical requiredness.”27(p4) With that definition of
narrative in mind, for the purpose of this article, constructed narratives have an addi-
tional layer of culturally constructed meaning. Essentially, constructed narratives form
once a culture or society upholds and maintains a particular version of a narrative’s
reality until it takes hold.28(p106) A constructed narrative is often propagated in order
to bolster political aims. One example might be after 9/11, when the acts of a few radi-
calized Muslims became part of a constructed narrative that had an impact on all
Muslims.
Like Atypical, the television series Nurse Jackie about a dedicated nurse who strug-
gles with an opioid addiction is said to offer a grounded, compassionate, and under-
standing portrayal of someone with a diagnosis of SUD, essentially debunking the
cultural construction of the addict. The official trailer for Nurse Jackie ends with,
“Walking the line between saint and sinner, Edie Falco is Nurse Jackie.”34 Instead
of lessening stigma, the narrative of addiction could not be clearer: Nurse 5 saint,
nurse with SUD 5 sinner. Again, this narrative would be seen differently if the tag
line had been: “Walking the line between helper and sufferer” or “provider and patient”
or “saint and substance user, Edie Falco is.”
The 2 narratives surrounding autism and addiction are not expected to converge,
and they do not. That is to say that the dearth of concern, research, and action in rela-
tion to the dual diagnosis of ASD and SUD is most likely caused by each narrative’s
disconnection from the other. A 2016 literature review of the few publications address-
ing co-occurring ASD and SUD concluded that screening for substance use is stan-
dard practice for most mental health diagnoses but far less routine for those with an
autism diagnosis.3
There is significant evidence that SUD should be a concern within the autism commu-
nity and the medical community, but there is minimal attention being paid to this dual
diagnosis. There are a very few studies addressing treatment, and those that do have
very small sample sizes. In addition, for the most part, the treatment is not particularly
Cooccurring ASD and SUD 41
Treatment Options
The 1 evidence-based treatment that overlaps for both diagnoses is cognitive
behavior therapy (CBT), and 1 study cites that patients benefitted when SUD treat-
ment providers were educated about ASD and then trained in CBT adapted to
ASD.48 The study’s CBT protocols were based on adaptations by Wood and
42 Kunreuther
colleagues49 that maintain traditional CBT goals such as exposing and challenging ir-
rational beliefs while adding behavioral support and other treatment elements tailored
specifically for ASD. Although Wood and colleagues49 promote using a manual, Hel-
verschou and colleagues’48 explorative study of CBT for co-occurring ASD and SUD
found the needs of the participants too complex to simply follow a manualized CBT
format, and instead providers adapted their treatment according to each individual’s
particular strengths and challenges. Despite the call for flexibility and creativity, the
study recommends treatment be structured, direct, and concrete. Supplemental writ-
ten instructions are also recommended. In order to add predictability and reduce anx-
iety, providers are encouraged to regularly clarify duration of treatment and keep to a
set schedule. Another recommended component of treatment is psychoeducation for
both the providers and the patients regarding the characteristics of ASD and their
impact. Study results emphasize that supervision for the SUD providers is critical
because they may think they are incompetent because of their lack of familiarity
with ASD. The biggest takeaway of this study seems to be less about CBT as a
stand-alone treatment protocol and more about the necessity of collaboration among
SUD, ASD, and area services providers, emphasizing significant and ongoing commu-
nity support (eg, housing and employment opportunities) during and after treatment to
achieve and sustain positive outcomes. Wraparound services to improve individuals’
quality of life and maintain recovery have been a consistent long-term rallying cry of
SUD providers for their clients with or without ASD.50
A more novel approach to treatment appeared in a published case study that found
that the usual mandated treatments for SUD, such as group therapies and fellowships,
did not work for the study’s participant and so the investigators tapped into the sub-
ject’s desire for routine, using a tracking log to monitor and reduce use.51 In their
article “Treatment of Addiction in Adults,” Lalanne and colleagues52 advocate for
various treatment modalities such as cognitive remediation therapy (CRT), an interven-
tion that targets executive dysfunction that can accompany both excessive alcohol
use and ASDs. Although there are no evidence-based studies endorsing CRT for a
dual diagnosis, Lalanne and colleagues52 found that their patients benefitted from
enhancing executive function before enrolling them in traditional psychosocial thera-
pies such as CBT to treat SUD. Another recommended approach is motivational inter-
viewing (MI), which is not a therapy but a means of steering individuals to consider
treatment by tapping into their own desire for change.53 MI is a technique that ac-
knowledges ambivalence in order to encourage change. The goal of MI is to resolve
ambivalence toward giving up a drug of addiction by tapping into the client’s desires
and values. Rather than confrontation or argument, the clinician forms an alliance with
the client by using empathy, understanding, and support but also direction and guid-
ance. The patient and therapist work together collaboratively to move toward
change.53 Although MI is being explored as a technique that might be effective for pa-
tients with ASD, there seem to be no evidence-based studies endorsing its efficacy.
Lalanne and colleagues52 recommend clinicians be wary of abstract goals and moti-
vations. Providers might need to assist a patient with verbalizing ambivalence and may
need to use diagrams or other visual aids to illustrate the discrepancies between their
current behaviors and their goals.
The director of transition services for University of North Carolina treatment and ed-
ucation of autistic and communication related handicapped children (TEACCH) autism
program uses MI by folding it into TEACCH’s Transition to Employment and Postsec-
ondary Education Program (T-STEP), which is used to achieve a variety of goals.54
SUD treatment is reframed by using T-STEP’s goal-setting techniques, such as formu-
lating a “dream goal,” which may or may not be related to recovery, and distilling it into
Cooccurring ASD and SUD 43
challenges might allow more considered treatment and follow-up care for individuals
with autism.
Family interventions are traditionally stressed more for autism interventions than
addiction treatment. In their article on treatment of addictions for adults with ASD,
Lalanne and colleagues52 advocate family interventions. Most SUD treatment facilities
tend to separate the individual from the family while the patient is in treatment and
might, toward the end of treatment, cautiously reintroduce family back into the pro-
cess. The National Institute for Drug Abuse endorses several family-based treatment
modalities for SUD. Including family while treating both diagnoses makes sense
because treatment can reduce stress for the family, which ultimately benefits the pa-
tient. Families may also benefit from clinical counsel as they navigate the fine line be-
tween support and enabling, particularly for families used to autism early-intervention
treatments. Family members may also need guidance on how to support recovery; it is
common for family to inadvertently push the person with an SUD back to using.57
Although for-profit residential addiction treatment providers tout tailored treatments
for patients with co-occurring disorders including autism, there seems to be no evi-
dence of their effectiveness.
alcohol use disorder. There are several studies of Naltrexone as a treatment of autism
(in children) with modest results.61
Psychopharmacologic treatments such as antidepressants or non–habit-forming
antianxiety medications should be considered for underlying mental health conditions
if they are contributing to substance use. It is not recommended that benzodiazepines
be prescribed for someone with an SUD as they can be habit forming. If benzodiaze-
pines are prescribed, the course should only be for a short period of time, such as a
week or 2, not long term.
Although several treatment options are possible for patients with co-occurring ASD
and SUD, most are not evidence based and those that have been studied, such as
Helverschou and colleagues’48 recent exploratory study of CBT or Rengit and col-
leagues’51 study of the use of a tracking log, have small sample sizes and no control
groups. Despite the evidence that treatment is needed, there is still no evidence-
based treatment of individuals with a dual diagnosis.
SUMMARY
According to recent research, individuals with an autism diagnosis are twice as likely
to develop an SUD than the general population. However, despite this research and a
handful of published studies that bolster the connection between these 2 diagnoses,
there does not seem to be much alarm within the autism community or the medical
community at large. At present, there are a few evidence-informed treatment studies,
but small sample sizes and uneven outcomes offer limited and modest options.
One means of increasing awareness is to deconstruct narratives propagated by the
medical community and, more broadly, society. Respecting individuals with an autism
spectrum and/or SUD and not stereotyping them by accepting constructed narratives
in which the person is either innocent or dangerous, guileless or nefarious, childlike or
duplicitous could help to change outcomes. Ultimately, those with both diagnoses
deserve support and a decent quality of life. Deconstruction of constructed narratives
is critical to overcoming biases, raising awareness, expanding preventive initiatives,
increasing screenings and assessments, offering support and resources, and encour-
aging innovative research into the most effective treatment strategies. Both ASD and
SUD have a history of inaccurate constructed narratives such as the so-called refrig-
erator mother as the root cause of a child’s autism or the so-called crack baby as the
inevitable offspring of someone struggling with cocaine use disorder. Thankfully, those
descriptors have faded, but other harmful culturally constructed narratives remain. It is
the duty of clinicians to continually step back, assess, and reassess and it is their re-
sponsibility to propagate narratives that are nuanced and respectful.
DISCLOSURE
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