Asd and Substance Use Disorder

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A u t i s m S p e c t r u m D i s o rd e r

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

Elizabeth Kunreuther, MSW, LCSW, LCAS*

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]

Psychiatr Clin N Am 44 (2021) 35–49


https://doi.org/10.1016/j.psc.2020.11.004 psych.theclinics.com
0193-953X/21/ª 2020 Elsevier Inc. All rights reserved.
36 Kunreuther

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.

A DUAL DIAGNOSIS: AUTISM SPECTRUM AND SUBSTANCE USE DISORDERS

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

ritualistic elements: addiction to a substance is learned behavior that occurs after


administering the substance repetitively. It is repetitive behaviors that can eventually
lead to dependence. In addition, like a “special interest” for those with autism, individ-
uals with SUD often report a ritualized aspect to their use, at least initially. There is also
evidence that, for individuals with SUD, finding and administering the substance,
particularly an illicit substance, is almost as addictive as the substance itself.11

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

Acceptance and Fitting in


There is a fundamental factor as to why adolescents with or without autism abuse
alcohol and drugs: fitting in.17 Although awareness of ASD has reduced stigma among
the general population, people with ASD often know they are different and many report
they struggle with not fitting in. The Centers for Disease Control and Prevention cites
bullying, both verbal and physical, as a risk factor for developing an SUD, and, accord-
ing to the National Outcomes Indicator Report: Transition to Adulthood, half of the in-
dividuals surveyed cited they were victims of bullying.4,18 It should be no surprise that
adolescents might start to drink or use drugs to cope or as a means to assimilate with
their neurotypical peers. Assimilation requires a wide range of adaptations, including
tolerating some of the ritual school activities that promote social bonding, such as
sporting events, parties, and dances. People with ASD claim that substances can
help them to manage sensory sensitivities that are a part of daily life:

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

Perceived Protective and Risk Factors


Particular characteristics of patients with autism might be seen as protective factors
for developing an SUD. Social and communication challenges, sensory sensitivities,
a desire for structure and rule following are generally viewed as barriers against devel-
oping an SUD. The sensory issues of autism might lead to assumptions that there is a
low risk for consuming alcohol or illicit drugs because sensory sensitivities might
discourage intake. For example, someone with ASD might not be able to abide the
taste of alcohol or its aftereffects. “I’m alcohol intolerant - all the types I’ve tried
have a horrible taste/after-taste and the stuff makes me feel like crap later.”23 Sensory
issues might prevent individuals with ASD from managing the feel of drug delivery
nasally, intravenously, or via smoke inhalation, “I find the consumption methods
disgusting ex: smoking, snorting, injecting.”24 It may also be assumed that individuals
with autism do not have the social wherewithal to locate and purchase illicit sub-
stances or the communication skills to navigate the nuanced and discreet interactions
necessary to purchase illegal drugs or alcohol when underage.
These assumed protective factors of ASD for preventing a SUD may be risk factors
for developing an SUD. Individuals with autism often report that drugs or alcohol
dampen sensory sensitivities. One vlogger reports: “. dealing with a lot of the sensory
integration problems people with Asperger’s sometimes have—noises being too loud,
lights being too bright, too much commotion going on at once, not liking how your shirt
feels on your skin . a lot of people with autism and Asperger’s might use a substance
to block all that shit out and that’s what I did.”25 Some researchers misinterpreted in-
dividuals with ASD’s social challenges, assuming these challenges indicated a lack of
interest in social interaction rather than an unwanted barrier to connecting with
others.5 Most people with autism desire relationships and, like the general population,
may use drugs or alcohol to help facilitate social interactions. As 1 study participant
noted: “‘‘I always used to drink before going out to social occasions, because having
Aspergers you’re not always comfortable in social situations.”5 This observation is
also true for communication challenges, because people with autism report that sub-
stances can help facilitate social exchanges: “When I’m drunk . I’m just so much
more relaxed, more sociable. I can have weird conversations with people. I walk up
to people and introduce myself. People think that I’m just a normal person.”26
Cooccurring ASD and SUD 39

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.

The Constructed Narrative of Autism Spectrum Disorder


It is common for individuals with disabilities, particularly developmental disabilities, to
be infantilized.29 These narratives may evolve benignly but, left unchecked, they can
inadvertently propagate stereotypes, stigma, and prejudice that can be exceedingly
harmful. Adolescents or adults with autism are often portrayed as innocent or naive.
People with ASD are regularly described as childlike and guileless, unable to lie and
easily taken advantage of.30 Although this narrative may be accurate in some cases,
it can be overused and misleading. For example, the much-lauded television series,
Atypical, about a high school student with ASD and his neurotypical desires, propa-
gates the cultural narrative of an individual with autism as an innocent used as a foil
to neurotypicals in order to offer the audience a bit of humor and just enough trans-
gression for some family-friendly shock. The program’s official trailer ends with the
adolescent with autism sitting in the passenger seat of his mother’s car. As she drives
he states: “At some point, I really, really hope I get to see boobs.”31 The mother’s
straight face shifts to an expression that is a mix of surprise and dismay. The viewers
are all in on the joke. The person with autism’s direct and unfiltered verbal expression
of sexual desire is akin to the desire of an 8-year-old: so sweet, so guileless, and, ul-
timately, desexualized. This narrative has some basis: individuals with autism may lack
nuanced social or communication skills that could filter or phrase their desires subtly.
However, what if this high school student expressed the same desire in adult slang? If
he had, how would it have been received? If the series hero had said “I really, really
hope I get to see tits” while sitting next to his mother, the narrative would become a
little more dangerous, a bit frightening, and perverted. Although equally accurate, it
does not fit in with society’s construction of an individual with disabilities, particularly
developmental disabilities, safely expressing sexual desire in a childlike manner,
essentially desexualized.32

The Constructed Narrative of Substance Use Disorder


What about the narrative associated with someone who has an SUD? Innocent and
guileless would probably not be the adjectives that come to mind. The narrative linked
to those with SUD is usually one of dangerousness, dishonesty, and corruption.33 No
doubt the criminalizing of this medical condition has significantly influenced its narra-
tive. The cultural construction of the person in active addiction is someone who has no
scruples, no morals, and no compassion, rather than someone struggling to survive.
40 Kunreuther

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

An Example of an Accepted Intersection of Constructed Narratives


Why is SUD screening a standard practice for most mental health diagnoses but not
autism? Individuals with autism share a variety of symptoms and challenges with
those diagnosed with schizophrenia. However, there is significantly more research
addressing a schizophrenia/SUD dual diagnoses than one of ASD/SUD, even though
an autism diagnosis is more prevalent than a diagnosis of schizophrenia.35,36 Although
other factors could be at play, such as high-functioning autism’s late arrival in the early
1990s to the disorder’s diagnostic criteria, from a constructed narrative perspective,
the discrepancy is most likely caused by the narrative associated with schizophrenia
being more in line with that for SUD. This connection is particularly provocative
because patients diagnosed with schizophrenia have eccentricities and social chal-
lenges similar to individuals with an autism diagnosis, but the constructed narratives
associated with both diagnoses are considerably different.37 For example, even
though individuals with autism and schizophrenia diagnoses may be equally repre-
sented in the criminal justice system, the diagnosis of schizophrenia is more likely
than autism to evoke a cultural narrative of danger and uncontrolled violence.38,39
Of course, this narrative is inaccurate: clinical research clearly shows that people
with schizophrenia are significantly more likely to be the victim of violence than the
perpetrator, but the constructed narrative allows a connection between schizophrenia
and SUD to be accepted.40 The narratives of both schizophrenia and SUD align and so
the medical community has been able to accept and endorse the connection, giving it
significantly more attention than a dual diagnosis of ASD and SUD. The unintended
consequence of the endorsement of schizophrenia’s and SUD’s common narrative
tropes could be a robust body of research addressing the connection between the
two.41 However, the lack of convergence of the ASD and SUD narratives has led to
a paucity of research, even though addiction to substances is just as serious a prob-
lem for the ASD community.

ASSESSMENT AND TREATMENT OPTIONS

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

innovative. Most of the literature recommends a team approach and collaboration


among providers from both the autism and recovery communities.

Screenings and Assessments


The Diagnostic and Statistical Manual of Mental Disorders, Fifth Revision, cross-
cutting symptom measure is a 23-question self-rated and informant-rated health
assessment with 2 questions dedicated to substance use/misuse.42 If an individual’s
scores on either of those questions raises concern, the ASSIST screening tool is rec-
ommended.42 Although the alcohol, smoking and substance involvement screening
test (ASSIST) is thorough and easy to understand, many of the questions are predi-
cated on someone who has had successes that are now compromised because of
substance use. An adult with autism may not have the same baseline as someone
who is neurotypical, and so the answers to questions such as “During the past
3 months, how often have you failed to do what was normally expected of you
because of your use of (FIRST DRUG, SECOND DRUG, AND SO FORTH)?” or “Has
a friend or anyone else ever expressed concern about your use of (FIRST DRUG, SEC-
OND DRUG, AND SO FORTH)?” may not reveal as much information as intended.43
Some providers recommend the car, relax, alone, forget, friends, trouble.(CRAFFT),
a screening tool used for teenage substance use, with its simple wording and yes-or-
no answer format, the CRAFFT could be a good fit for individuals with ASD who have
concrete thinking and would benefit from simple yes-or-no questions.44 The
CRAFFT’s queries “Do you ever use alcohol or drugs to relax, feel better about your-
self, or fit in?” or “Do you ever use alcohol or drugs while you are by yourself, or
alone?” may also be a good fit for patients with social and intellectual challenges.
Whatever screening tools providers choose, they need to read them first to ensure
that the language is clear and direct. For example, questions such as, “Have people
annoyed you by criticizing your drinking?” or “Have you ever had a drink first thing
in the morning to steady your nerves or to get rid of a hangover (eye-opener)?” from
the often-used CAGE (cut- annoyed-guilty- eye) screening tool might need to be
reworded to something like, “Do people complain about your drinking? Does their
complaining annoy you?” or “Do you sometimes wake up nervous or shaking?
Does drinking make it stop?”45
Individuals with ASD may be more comfortable with online screening tools. Again,
providers need to be aware that the questions can be unclear. Some online tools
have questions such as, “Do you use more than 1 drug at a time?” which might be
confusing if medications are being prescribed. The tobacco, alcohol, prescription
medication, and other substance use (TAPS) is an online tool that is simple and
straightforward, is meant to be done with a health care professional present, and
can be completed by either the patient or the clinician.46 Once the screening is com-
plete, the outcomes include clear and detailed recommendations for how a clinician
might move forward with the patient, including links to recommended interventions.
The National Institute on Drug Abuse Screening and Assessment Tool Chart has links
to a variety of evidence-based screening and assessment tools and resource mate-
rials for both adults and adolescents (although not specifically for those with ASD)
that are easy to access and explore.47

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

short-term objectives that include harm reduction or abstinence-based action steps.


This approach treats the client’s addiction as a barrier to a desired outcome rather
than alcohol or drug cessation as the desired outcome. For example, if a client has
a dream goal to live independently, short-term objectives could address the impor-
tance of financial autonomy via maintaining employment and saving money, both of
which could be compromised by substance use. The clinician then uses MI to help
the client gain understanding of how substance use might be an obstacle to achieving
the long-term goal. So, if clients share that they drink until they pass out, empatheti-
cally ask the clients some questions: was the client able to make it to work on time the
next day? Does the drinking affect work performance? If the client reports they make
excuses for tardiness or poor job performance, the clinician can ask whether that feels
honest. If not, how does being dishonest make the client feel? Does it make the client
feel isolated or lonely? Using MI as a means of self-actualization can motivate individ-
uals with SUD to consider change, and then the therapist and client can collaborate to
create achievable actions steps such as cutting back on substance use for 3 weeks or
trying at least 1 Alcoholics Anonymous (AA)/Narcotics Anonymous (NA) meeting a
week (with or without family or support).
One role ASD professionals or their clients should expect when seeking treatment is
that of interpreter to ensure that health care professionals unfamiliar with ASD are
aware of the characteristics of autism and adapt protocols accordingly. If detox, inpa-
tient, or intensive outpatient treatment (such as a partial hospitalization program) is
considered, it is critical that the facility’s staff understand ASD and the importance
of consistency when treating someone with autism. Even though facilities should
have structured schedules throughout the day, there still can be a lot of unknowns
that might make it difficult for someone with ASD to adapt. For instance, in an inpatient
detox facility, a doctor may prescribe a taper to treat alcohol, benzodiazepine, or
opioid withdrawal without explaining how the taper works. For someone with autism,
transparency could reduce anxiety because the treatment may change daily because
of medications being introduced and then tapered back. Sometimes a patient’s pre-
scribed medications may be contraindicated while detoxing from the substance of
addiction. For example, if the individual has had seizures in the past while detoxing
from alcohol or benzodiazepines and is taking the antidepressant bupropion (Wellbu-
trin), the medication may be discontinued while the patient is in detox because sei-
zures can be a side effect of bupropion.55 These sorts of changes need to be
explained in a clear and understandable manner. In inpatient treatment facilities, clini-
cians often meet with patients when time is available, and those meetings could vary
from day to day. It may be important to educate SUD providers that clients with ASD
might benefit from adding structure, such as offering a daily meeting time or a warning
if a meeting time might change. In order to facilitate consistency and reduce anxiety,
clinicians may want to work with the clients to create a protocol and print an agenda
for their sessions that they can adhere to each time they meet. Facilities may have
rounds or team meetings every other day or once a week, and, again, explaining
this component to the patient in advance could reduce anxiety and allow the patient
to prepare and process. It might also be helpful to educate SUD clinicians on how
to coach their patients with ASD for participation in groups, because SUD treatment
often adheres to group treatment protocols. It is common for those who are uncom-
fortable attending groups to be labeled noncompliant.56 Individuals who attend sub-
stance abuse intensive outpatient treatment (SAIOP) may need the group process
explained on when/how to share and how much to share (role playing could help).
Given developmental disability, mental health, and substance use services are often
siloed, educating SUD providers about social, communication, and sensory
44 Kunreuther

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.

Peer Support Groups and Fellowships


There are no studies regarding the efficacy of fellowships such as AA, NA, SMART
(Self-Management and Recovery Training), or Refuge Recovery for individuals with
autism. In addition, the evidence for some peer group outcomes, such as AA, is mixed
for the general population.58 Anecdotally, individuals with ASD post that these fellow-
ships’ rules bring a welcomed structure and the meetings offer a much-needed social
network, or they complain about AA’s or NA’s rigidity, a religious/cultish/judgmental
feel, and the ritual of the meetings, not understanding the process and the unspoken
rules.59 SMART recovery, a fellowship rooted in CBT, might be a good fit for someone
with co-occurring ASD and SUD but it is not as ubiquitous as AA and NA. It is impor-
tant to assess and reassess whether a group setting is amenable for someone with
ASD. Individuals in AA joke about the 13th step, alluding to predatory behaviors of
more established members toward newcomers (most often men toward women)
that could be dangerous for someone that may have challenges reading social
cues. Often the criminal justice system mandates individuals facing charges related
to their substance use to attend group treatment, and modalities such as AA or SAIOP
may not be the right fit for somebody with an autism diagnosis.

Psychopharmacologic Treatment Options


The Internet provides an array of illicit substances as treatment of ASD and SUD, with
MDMA (3,4-methylenedioxymethamphetamine) and cannabis being the most com-
mon (in some locales, cannabis is not illicit anymore). Because this article is address-
ing substance misuse that might lead to SUD, it would be hard to justify their inclusion
as possible treatment options.
Medication-assisted treatment such as methadone or buprenorphine (Subutex or
Suboxone) is a highly effective treatment of opioid use disorders. The latter has had
extremely positive outcomes because, unlike methadone, it can be prescribed and
so does not tether individuals to their treatment.60 There is no evidence as to any dif-
ference in effectiveness for patients with autism because there has been no research.
Acamprosate can reduce the effects of alcohol on the brain, limiting rewards and
reducing cravings. Naltrexone and the long-acting monthly shot, Vivitrol, is an opioid
blocker that can offer improved outcomes for both opioid use disorder as well as
Cooccurring ASD and SUD 45

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

The author receives (minimal) royalties from Jessica Kingsley Publishers.

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