This is an Accepted Manuscript of a book chapter published by Pavilion Publishing and Media in The Neurodiversity Reader on 25th
September 2020 available online: https://www.pavpub.com/mental-health/the-neurodiversity-reader
Autism and Addiction
Let me introduce myself. My name is Tania Browne, I’m an alcohol and addiction
researcher at the University of Stirling, and at the sprightly age of 46 I found out I
was autistic.
Now, this is hardly a dramatic revelation. In fact, it’s increasingly common here in the
UK. Many people from past generations, like me, have slipped through the
diagnostic net. In recent years there has been an increasing demand for diagnosis of
people with suspected Autism Spectrum Condition (ASC) in adult mental health
services (Crowley et al, 2018).
There are several reasons why we adults with ASC may not have been diagnosed in
childhood. Firstly, until recently there was quite simply a lack of awareness in the
educational and health care communities. Autism wasn’t recognised in the DSM until
1980, and Asperger Syndrome in 1994 (though it’s worth noting that in the latest
edition of DSM, Asperger Syndrome has been removed as we realise the broad
variety of autistic adults and their “spiky” profiles*).
Some of us are misdiagnosed with other conditions for long periods of time until one
day, the penny drops; obsessive-compulsive disorder, ADHD, and (in my own case)
bipolar disorder are all common, and women especially are often misdiagnosed with
borderline personality disorder. Our parents may have thought there was something
a bit “odd” about us, but they may have been unwilling to pursue a diagnosis due to
the stigma and discrimination that autistic people still face. There is also a racial bias
in diagnosis. A study in the USA in 2007 found that white children were over twice as
likely to be diagnosed with an ASC than their African American peers. These
children had very similar symptoms, but were more likely to be diagnosed with
ADHD (Mandell et al, 2007)
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Many of us will have been considered a little “shy” or “introverted” as children, but
without what many people think of as the “classic” symptoms of autism. Our
problems dealing with the world might only have become apparent as we grew into
adulthood and faced social demands in the world of work, and the need for executive
functioning skills (skills such as timekeeping and the ability to organise yourself). It’s
now thought that women in particular learn “masking” skills to conceal their autism,
especially mimicking small-talk, rehearsing expected conversations, and having
more “feminine” special interests (Cage and Troxall-Whitman, 2018).
There has been a lot of talk in the media about how diagnosis of ASC is increasing,
and from this some people deduce that the condition itself is on the rise. However,
there is no evidence to support this – the illusion is created by changing rates of
diagnosis, rather than an increase in autistic people. There has only been one large
scale study in the world measuring prevalence of autism in adults. In 2011, Terry
Brugha and colleagues at the University of Leicester found that while the prevalence
of autism in the population was not age dependant, the rate of existing diagnosis did
correlate with the age of participants. In other words, autism rates are pretty constant
over time, it’s just that we’re better at spotting it than we used to be. Brugha’s best
estimate was that around 1 in 75 people of all ages are on the autism spectrum. In
their conclusion, he and his colleagues write that:
“In our clinical experience, providing….social care to adults with a diagnosis of ASD
leads to improvements in quality of life and reductions in the inappropriate use of
high-cost hospital services.….. A great deal more research should be directed at the
epidemiology and care of adults with this condition.” (Brugha et al, 2011)
This last quote is important, because the general health of autistic adults has rarely
been studied and, as I’ve discovered during my own research, there’s barely any
published evidence at all about autistic adults and addiction to alcohol and drugs.
The assumption that an autistic person would rather read a nerdy website all night in
their room than party hard might prevent people, including medical staff, from
suspecting substance use in autistic teens and adults. In my case they’d be
In Milton D, Murray D, Ridout S, Martin N & Mills R (eds.) The Neurodiversity Reader: Exploring
Concepts, Lived Experiences and Implications for Practice. Shoreham by Sea: Pavilion Publishing.
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absolutely right, but everyone is different. As the saying goes “If you’ve met one
autistic person….. you’ve met one autistic person.” The fact is that autistic people
can, and do, use alcohol and drugs. Even the briefest scan of Reddit autism forums
will show many discussions among those who self-experiment with cannabis,
cocaine, and MDMA to see if it alters their personal “symptoms”, as well as those
who are seeking advice as they drink to combat their loneliness. Of course, this
doesn’t necessarily lead to addiction, but if combined with other conditions such as
depression and anxiety it can be a slippery slope.
Though screening for a substance use disorders is common for many mental health
conditions, it is not routine for those with ASC. Arnevik and Helverschou (2016)
surveyed previously published scientific studies, and identified only 18 examining the
association between ASC and substance use disorders. The results of these showed
rates of adults diagnosed with ASC with substance use problems varied widely
between 0.7% and 36%. However all of the identified studies were on small,
specialised populations, such as offenders and patients in mental hospitals. The
samples were also predominantly male, which makes drawing comparisons and
establishing a good estimated rate difficult.
A population-based study trying to establish the rate of substance use disorders in a
general population of autistic adults was not published until 2017. In a Danish study
of over 26,900 individuals, Butwicka and colleagues documented a doubled risk of
alcohol and substance use-related problems among autistic adults when compared
to the general population. A population study such as this had never been done
previously, and provides stark contrast with the studies of niche samples gathered by
Arnevik and Helverschou. It suggests that prevalence of substance use disorders in
autistic people may be much higher than previously estimated – something that I
myself am keen to study further.
In Milton D, Murray D, Ridout S, Martin N & Mills R (eds.) The Neurodiversity Reader: Exploring
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There are several good reasons why we should make the effort to establish the rates
of autistic people having problems with alcohol and drugs, and to further study the
links between autism and addiction;
• the perceived “protective factors” of autism are overstated
• depression is strongly linked to substance use, and a higher proportion of
autistic people experience depression and anxiety than in the general
population
• Social isolation and anxiety are shared common factors in both ASC and
substance use disorders
• There is a significant discrepancy between need and support for autistic
adults
Let’s go through these points in turn.
Perceived “protective factors” of autism are overstated
The protective factors of an autism diagnosis may appear to outweigh the risk of
alcohol and substance use. For example, many might assume that autistic people
tend to be strict rule-followers, and the idea of social boundaries or breaking the law
would be unthinkable. Sensory processing sensitivities could make the taste of
alcohol unpleasant and the concept of snorting, smoking, or intravenous drug use
abhorrent (Kunreuther and Palmer, 2017). The assumption that an adult with ASC
doesn’t want to socialize or feel accepted may prevent primary care staff from
suspecting substance use in autistic adults.
It has sometimes been argued that there is no link between autism and substance
use disorders, and some studies identify autism as a protective factor for alcohol or
drug addiction (eg. Ramos et al, 2013). However, such studies often use young
people in specialist care settings, and not those in general education. Kunreuther
and Palmer (2017) point out that if an autistic adolescent is in a mainstream school,
then the desire to “fit in” may still lead to experimentation with alcohol and substance
use. More and more children diagnosed with ASC are being ‘mainstreamed’, so are
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Concepts, Lived Experiences and Implications for Practice. Shoreham by Sea: Pavilion Publishing.
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more readily vulnerable to social situations, peer pressures, relationship issues, and
school (and employment) successes and failures. This is important, as alcohol and
substance use disorders in adulthood frequently begin in adolescence (Levy and
Sundaram, 2018).
Clarke and colleagues (2016) also note that there is a significant discrepancy in past
studies regarding substance use in autistic adults. Most studies didn’t factor in any
kind of desire for social interaction, but in their own thematic analysis of 8 interviews
they found that the theme of social difficulties dominated their overview. The desire
to “fit in” with their peers appeared to be an important motivator in the participant’s
use of substances including alcohol, cannabis, codeine, cocaine, and MDMA.
Depression is strongly linked to substance use. A higher proportion of people
with ASC experience depression and anxiety than in the general population
A systematic review reported by Rydzewska and colleagues suggest that
depression, bipolar disorder, schizophrenia, suicidal thoughts and behaviour, and
non-affective psychosis are more common in autistic adults than other people
(Rydzewska et al, 2019).
In their 2018 study, Wang and colleagues note that there is a well established
connection between depression and substance use in neurotypical people. They
suggest a mechanism through which the stress of stigma relating to mental illness
may lead to “emotional dysregulation”, and maladaptive coping strategies such as
alcohol and drugs. Wang and colleagues suggest that this stigma undermines self-
esteem, increases isolation, and deters people from seeking help – this may equally
be a factor when considering the stigma of autism, especially when seeking
diagnosis as an adult (Kunreuther and Palmer, 2017). However, it’s important to note
that Wang and colleagues also acknowledge the line of causation may be the other
way around – substance use might lead to emotional dysregulation and maladaptive
coping.
In Milton D, Murray D, Ridout S, Martin N & Mills R (eds.) The Neurodiversity Reader: Exploring
Concepts, Lived Experiences and Implications for Practice. Shoreham by Sea: Pavilion Publishing.
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Symptoms of anxiety and depression are commonly reported by adults diagnosed
with ASC, and this can make core autism symptoms worse and lower a person’s
quality of life. Hollocks et al (2019) reviewed a total of 35 studies of anxiety and
depression in autistic adults published between 2000 and 2017, and found a pooled
estimate of current anxiety and depression of 27% and 23% respectively in clinical
studies. This was considerably higher than would be expected, based on estimates
of 1–12% in the general population. The finding was similar for pooled lifetime
estimates of anxiety (42%) and depression (37%). Hollocks and colleagues also
found that specific anxiety disorders, particularly social phobia and obsessive
compulsive disorder (OCD), were more common in autistic adults.
Murray and colleagues (2019) found that 46% of 205 British adults who received a
diagnosis of ASC in adulthood reported symptoms that reflected moderate or severe
anxiety and/or depression. Cassidy and colleagues found that in a large sample
(n=374) of newly diagnosed British adults 66% had contemplated suicide,
significantly higher than both the general population (17%), and patients with
psychosis (59%). Further, 35% had attempted suicide, higher than previous
estimates of attempted suicide in general (2.5%) and university (10%) populations
(Cassidy et al, 2014). A later research paper from Cassidy suggests unique
contributors to suicide in autism when compared to the general population, which
need to be addressed in addition to important well-known factors such as mental
health, employment, and living arrangements (Cassidy et al, 2018).
In Sweden, Bejerot and colleagues (2014) discovered a higher rate of self-reported
social anxiety in 50 autistic adults when compared to the general population. A
systematic review of 25 papers also found strong links between autism and social
anxiety (Spain et al, 2018).
Social anxiety can produce a higher risk of problem drinking and drug use,
particularly when autistic adults are accustomed to using masking behaviours.
Masking is defined as camouflaging particular aspects of one’s behaviour from
others to “pass” in social situations, and is common in autistic people navigating the
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Concepts, Lived Experiences and Implications for Practice. Shoreham by Sea: Pavilion Publishing.
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non-autistic world (Bargiela et al 2016; Cage and Troxell-Whitman 2019). Peer
influence has been shown to be a predictor of alcohol use among college students
and young adults. Perceived norms are considered a strong predictor of alcohol use
and alcohol related negative consequences among young adults (Villarosa et al,
2016).
While the studies above can be seen as a first step in furthering our understanding,
the sampling and methods chosen are extremely homogenous. None of the studies
included adults with ASC tendencies but without diagnosis, or adults who had not
been in contact with clinical services, This means that they may not fully represent
adults with ASC in the whole population. They might possibly be of value in clinical
practice settings, but they have limited value to an understanding of the relationship
of autism to anxiety and depression in the wider community.
Social isolation and anxiety are shared common factors in both ASC and
substance use disorders
Many adults with ASC and related mental health issues report a sense of loneliness
and social isolation. Todd and colleagues (2004) defined ‘social exclusion’ as having
housing problems, being unemployed, having a lower education level and being
isolated (ie living alone). All of these factors regularly occur as a result of the
executive functioning problems frequently reported by autistic adults, leading to a
more chaotic lifestyle than the general population (Hollocks et al, 2014).
Drake et al (2002) noted that the biological emphasis formerly placed on
investigating people dually diagnosed with substance use disorders and mental
health disorders meant that vital issues such as social networks, boredom, poverty,
dysphoria and expectations of drug effects were neglected. The reasons may be
complex, but the desire to fit in with peers plays a key role in substance use among
those with psychiatric disorders. Boredom, loneliness and stress have been cited as
key reasons why people with mental disorders may use (and relapse into using)
In Milton D, Murray D, Ridout S, Martin N & Mills R (eds.) The Neurodiversity Reader: Exploring
Concepts, Lived Experiences and Implications for Practice. Shoreham by Sea: Pavilion Publishing.
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substances (Laudet et al, 2004). Participants in Laudet’s study also mentioned other
reasons why they used substances – to increase happiness, energy, and emotions,
and to reduce feelings of anxiety and depression.
Agwu et al (2016) note the role of social capital in substance use disorders, defining
social capital as a multidimensional concept “operationalised as economic, cultural,
and social assets, civic engagement, solidarity, trust and reciprocity.” Importantly,
Kunreuther and Palmer (2018) suggest that becoming involved in drinking and drug
subcultures may be a way for autistic people to gain social capital among other
marginalised groups when they feel rejected by mainstream culture.
Clarke et al (2016), in their interviews with 8 adults with ASC, come to the conclusion
that some socially oriented adults with ASC feel isolation and a lack of
connectedness, and will use substances to aid communication with others, and to
gain a sense of social inclusion. Clarke and colleagues conclude that “…contrary to
the protective factors of autism contained within earlier literature, the presence of…
[ASC]…leaves an individual as vulnerable to the development of SUD as the wider
population, and perhaps arguably more so.”
There is a significant discrepancy between need and support for autistic
adults
It’s now widely recognised that ASC is severely underdiagnosed in the adult
population, and that as a direct result of this there is very limited support available for
newly diagnosed adults. Similarly, adults diagnosed with ASC during childhood ‘find
themselves “falling off a cliff” into unstructured and overwhelming adult environments
for which they lack the tools for successful integration’ (Wallace et al, 2016). All
physical and mental health outcomes for autistic adults are poor, which puts them at
risk for alcohol and other substance use.
The autistic advocate John Elder Robison writes that outcomes for autistic adults
range from institutionalisation to seamlessly “blending” into the community. This
means that there’s a wide range of implications for support and services (Robison,
In Milton D, Murray D, Ridout S, Martin N & Mills R (eds.) The Neurodiversity Reader: Exploring
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2019). There’s still a great deal of stigma attached to an autism diagnosis which,
combined with a distinct lack of post-diagnostic support and services, may
discourage people who suspect that they’re autistic from seeking psychiatric
confirmation. Robison further points out that if the currently undiagnosed community
have similar outcomes to those with a diagnosis, the implications for future health
outcomes and the need for tailored treatments are sizeable if we consider Terry
Brugha’s prevalence estimate of 1 in 75 people in the UK.
The lack of monitoring and social support networks for autistic adults may ultimately
be a major factor in drinking and other substance misuse, and it’s an issue that
needs to be addressed. But how?
Adults with ASC may be under-served in mainstream addiction services
Arnevik and Helverschou (2016) point out that little is known about successful
interventions for autism and substance use disorders. They postulate, in fact, that
typical interventions may do more harm than good. Forced involvement in group
sessions or community based programmes could make autistic people anxious and
cause them to drop out. This could lead to further feelings of failure and alienation in
autistic adults, leading to more substance misuse…. a self-perpetuating cycle that
would be very hard to break.
Attwood (2018) agrees with this general view, stating that rehabilitation services
often rely on social living and group therapy and activities and provide limited
opportunities for personal space and solitude. Autistic people might need solitude,
guidance, and support in the social and disclosure requirements of group therapy.
They may have difficulties recognizing social and personal boundaries, converting
their thoughts and feelings into speech, knowing when to talk in a group, and
understanding how to show that they acknowledge the experiences and emotions of
other group members with substance use issues who may not be autistic.
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Much investigation still needs to be done to establish the scale of the problem of
autistic people with alcohol and substance use problems. What studies have been
done are on small niche populations, which are too varied to provide a comparison
even between themselves, and certainly not representative of the adult autistic
population in general. What’s more, the only existing population study focuses on
adults who have received a diagnosis, when it is known from Brugha that a large
proportion of autistic adults don’t have an official diagnosis.
The next steps are therefore to establish
• A clearer picture of a general community prevalence of SUDs among autistic
adults
• An initial scoping picture of the rate of alcohol and substance use among
people who are not officially diagnosed, but who suspect they have ASC
• The experiences of treatment so far; or if treatment has not been sought, the
perceived barriers to seeking help
• How clinicians may be able to tease apart the often mixed presentations of
ASC and SUDs, in order to provide more tailored effective treatments
Research already shows that autistic adults are more likely to report unmet medical
needs and dissatisfaction with their care than the general population (Nicolaidis et
al., 2012) as well as barriers in accessing medical care (Raymaker et al., 2017).
Additionally, only 38% of GPs report having had any training in ASC, and even those
who have report a lack of confidence in caring for their adult patients with autism
spectrum conditions (Unigwe et al, 2016). However, little has been published on
how to improve healthcare access and delivery for autistic adults. As the adolescent
and adult populations with autism spectrum conditions continue to grow, it becomes
increasingly important that we seek a better understanding of their health care needs
(Rydzewska et al, 2019; Robison, 2019).
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In a series of focus groups and an online survey of almost 2000 stakeholders,
Pelicano and colleagues found almost unanimous disappointment that autism
research is still primarily limited to the basic science – neural and cognitive systems,
genetics and other potential risk factors. As one autistic adult said, “it represents the
priorities of neurotypical people, not autistic people” (Pelicano et al, 2014). All
stakeholder groups agreed that much more research is needed in in services and
support, and they unanimously called for evidence based services and interventions.
Any research on alcohol and substance use disorders would contribute to such an
evidence base, for both the development of brief interventions directed at autistic
adults, and for more effective and “user-friendly” recovery services. There is clearly a
need for specialist staff within community mental health and addiction services who
have received training in the core issues surrounding autistic adults, and it has even
been suggested that a model of “ASC hub” workers be adopted. This would co-
ordinate autistic people’s mental health and recovery with psychosocial supports
such as future life/career planning, further education and independent living skills
(Crowley et al, 2018).
In a 2018 paper about the co-production of research, Sue Fletcher Watson and
colleagues describe activities necessary to build a culture where autistic people and
their allies can have meaningful roles in research. These included changing the
language describing autism, modifying or identifying physical spaces to enable
autistic participation, and adapting the structures and bureaucracy of academia to
facilitate autistic involvement and leadership in research. A similar approach needs
to be taken by the medical profession and addiction services, to provide a more
autism friendly space for those seeking help with problem alcohol and drug use. The
health of autistic people, and in some cases even their lives, may depend on it.
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