Autism Spectrum Disorder and Substance Use Disorders
Lisa R. Macafee
May 24, 2022
This paper discusses the unique challenges that individuals on the autism spectrum face with substance abuse disorders. To honor autism advocacy groups, individuals with autism will be referred to mostly using identity-first language of “autistic” as opposed to person first language of “a person with autism” and for this paper, autistic includes all diagnosis that were previously under the autism spectrum disorder umbrella in the DSM-IV. While many disabilities are separate from the core of an individual, autism is a difference in neurology, so many autistic people experience autism as part of what shapes their core. I am a 40-year-old autistic person who received my diagnosis at age 37 after being in and out of therapy for autism-related symptoms and traumas and struggled with substance use when I was younger. I wanted to explore the variety of reasons autistic individuals turn to substance use and what therapies and treatments are most effective for this population.
Autism and substance Abuse
Autism is a developmental disorder that includes deficits in social reciprocity, social communication, and restricted, uncompromising, or rigid interests and activities (Helverschou, Brunvold, Arnevik, 2019). Autism in adults is a field with underdeveloped research because only recently have adults been diagnosed with autism, and clinical diagnosis are still more commonly understood to be diagnosed as children, and with a bias towards male children. High functioning autistic people often go undiagnosed in childhood, and without treatment in adulthood, may find other ways to manage their symptoms such as substance abuse. 44% of autistic clients took more than two years in psychiatric care to receive an autism diagnosis, and it is estimated that many adult autistics are undiagnosed and underserved, leading to increased co-morbid disorders that could have been preventable (Nylander, et al., 2013).
Diagnosis of autism is on the rise in the last 20 years. Many attribute the increase in diagnosis to broadened diagnostic criteria and increased awareness about atypical and high-functioning autism presentation. While no one knows the cause of autism, certain factors can lead to higher prevalence. One such factor is opioid use of the mother during pregnancy (Feder, 2020). Other contributing factors include heavy drinking, smoking cigarettes, or being exposed to neurotoxic chemical pollutants such as lead and mercury during pregnancy. Autism is also highly hereditary, leading some to ask if autism is caused by substance use of the parent, or if the parent use substances because of their (un)diagnosed autism, and the autism is simply genetic? It seems that autism is about 20% - 30% genetically predictable and environmental factors affect the neuropsychiatric development of an individual with genetic susceptibility for autism (Xi, Wu, 2021).
Approximately 0.6% of the global population struggles with substance use disorder (SUD), and individuals with conditions such as personality or affective disorders, anxiety, schizophrenia, bi-polar disorder, PTSD, and attention deficit hyperactivity disorder (ADHD) are affected by SUD more than others (Helverschou, Brunvold, Arnevik, 2019). Lifetime rates for substance-use disorder (SUD) globally range from between 10% to 20% (Kronenberg, et al., 2015). Autistic individuals struggle with substance abuse at close to a doubled rate than their neurotypical peers with 19-30% of autistic clients in clinical settings also struggling with substance abuse. While many autistic adults have negative attitudes towards psychoactive substances, possibly due to most being illegal, interestingly, the more autistic traits a person exhibits, the higher their risk of substance-use disorder. It is also true that 1st degree relatives of an autistic person have a higher risk of substance-use disorder. This suggests that there may be genetic, shared environmental, or epigenetic factors surrounding autism that lend towards substance use (Butwicka, et al., 2017).
Between 1% - 2% of the population is autistic and autistic individuals are at risk for many secondary problems, including substance abuse. Autistic people are up to seven times more likely to come into contact with the criminal justice system than their neurotypical peers, and the autism community has generally responded with dissatisfaction or even been traumatized from their treatment by police. Police may in part respond to autistic individuals negatively because some autistic traits can be confused for signs of substance use or aggression including avoiding eye contact, egocentricity, social communication impairments, and dependence on routines. Police can easily perceive a struggle to verbally respond appropriately under stress as deliberately ignoring or refusing to comply. This difficulty in responding appropriately to the police is of course exacerbated by substance use of an autistic person. Autistic people tend to respond most positively when approached quietly, calmly, in a non-threatening manner (Mogavero, 2018).
There are many reasons that substance use may appeal to autistic people. At the top of the list are decreased social anxiety and increased (self-perceived) social functioning and reducing overall tension (Butwicka, et al., 2017). I will say that for myself, I turned to substance use because it was the only time I felt part of a social group. If everyone was intoxicated, they were all unable to make correct social interactions and my inability to predict subtle social cues was mitigated by no one expecting complex social interactions when high or drunk. It seemed to me that when other people were high or drunk seemed to be the time I had the easiest access to meaningful conversations and social interactions. When sober, I found it difficult to engage with people and became much more reserved. It took years of therapy for me to be able to comfortably interact with individuals socially sober, and even now, in new situations or with people I don’t know, I find it challenging. Overall, individuals with autism report dissatisfaction with parts of their life that substance abuse can diminish or dull temporarily and those autistic individuals with SUD often receive ineffective care and treatment (Kronenberg, et al., 2015).
While autistic individuals who are less socially proficient may be protected from peer influences of drugs or alcohol, autistic people who are socially outgoing and with higher intelligence have higher risk of substance use disorder. Screening for SUD during autism assessments is not standard procedure and it is likely that many high-functioning autistic people are missed for SUD upon assessment because they do not feel substance abuse pertinent to bring up when being supported for autism. Reasons for using substances as stated by 18 college students with ASD ranged from reducing social anxiety and inhibitions to finding peace, calming down, overcoming frustrations, or forgetting problems. Substance use is problematic when relied on long-term however, because of its effect to reduce already impaired social functioning. While getting drunk or high may reduce social anxiety temporarily, it also reduces the ability of the autistic person to judge what behaviors are socially acceptable in the setting they are in and they may experience consequences for unintentionally violating unspoken social mores and face increased social isolation or relationships challenges as a result of substance use after the fact (Helverschou, Brunvold, Arnevik, 2019).
Assessment and treatment of primary, secondary, and co-morbid disordersDiagnosing autism and substance use disorder can be challenging because some autistic traits could be products of substance use (Helverschou, Brunvold, Arnevik, 2019). Also difficult to navigate in substance abuse treatment is that 55% of people seeking SUD treatment also have a co-occurring psychiatric disorder. Individuals with co-occurring disorders typically have more severe symptoms, higher relapse rates, higher risks of hospitalization and incarceration, serious infections, and unstable housing, which all contribute to greater treatment needs (Kronenberg, et al., 2015). Additional comorbid conditions complicate the rate of substance-use disorder among autistics as well. For example, autistic people who also have ADHD are more likely to have substance use disorder, while autistic people with intellectual disability are less likely to turn to substance use (Butwicka, et al., 2017). Approximately 60% of autistic individuals have co-occurring psychological disorders (Nylander, et al., 2013). The challenge for mental health providers of individuals with autism who also have SUD is that 87% of adult autistics also have a co-occurring mental illness, and often multiple diagnosis. Each symptom needs to be addressed for effective care, and this can get overwhelming for the client and the practitioner (Houting, 2019).
Autism in general is likely underdiagnosed in adults who missed a diagnostic window as a child in k-12 education due to their presentation being milder. There is also a likelihood that females with autism are underdiagnosed due to diagnostic bias for males and higher masking social difficulties in females with autism. Autistic adults who are undiagnosed with autism are at a higher risk for mental health disorders, and possibly SUD due to untreated autism. Adults with autism have high rates of co-occurring disorders including intellectual disability, affective disorders, anxiety, and psychotic disorders, all applicable disorders will need to be taken into account for each individual to receive effective and individualized care (Nylander, et al., 2018).
Adults who go undiagnosed often face increasing mental health problems as they cannot find the solution to why they cannot fit in, cannot understand what others imply is simple, and cannot navigate complex employment. Undiagnosed autistics often default to the idea that they are simply bad, and there may be a lot of work to do in therapy to address and reverse these ideas (Stagg and Belcher. (2019). It may be beneficial to screen for autism for clients with serious mental health disorders such as borderline personality disorder (BPD) as there are an often an overrepresentation of autistic traits present in clients with BPD and treating the autism symptoms separately, such as rigidity, patient-therapist communication issues, emotional understanding, executive function deficits, and difficulties relearning may be helpful for best outcome potential (Kaltenegger, Philips, Wennberg, 2020).
One assessment tool that is free and available to the public online is the Autism-spectrum Quotient (AQ), which has been demonstrated to be effective in discerning if an individual may have enough autistic traits to warrant further exploration of a diagnosis. This assessment relies on self-reporting, so is not as reliable as a clinical assessment. For many in the possibly-autistic-and-exploring-options community, having a free and easy to access assessment to let them know they may be on the right track in even attempting to look into autism can be a lifeline. The AQ can also be used by practitioners who are less familiar with autism to determine to they should refer to a developmental psychologist or autism specialist for further testing. That being said, caution should be used when using assessments like these because many traits highlighted as autistic in the AQ could also be traits for obsessive compulsive disorder, social anxiety disorder, or ADHD (Sizoo, et al., 2009).
While ADHD has been shown to have high rates of substance abuse disorder comorbidity and autism has not shown as high rates, autism often co-occurs with ADHD. About 28%-80% of autistic individuals also meet the diagnostic criteria or show signs of ADHD, but often will get one diagnosis or the other, and the 4th edition of the Diagnostic and Statistical Manual of Mental Disorders specifically prohibited an ADHD diagnosis in addition to an autism diagnosis, therefore it is likely that many autistic individuals are underdiagnosed for ADHD and at higher risk for SUD as well. Autistic individuals with SUD are more likely to abuse alcohol than illegal drugs because of the complex social interactions needed to secure illegal substances and the challenges that autism poses in negotiating these spaces (Kronenberg, et al., 2015).
Recovery and resilience interventions for autistic substance abusers
There have been few research studies to find appropriate SUD treatments for autistic individuals, and traditional processes such as group therapy may be counterproductive for some autistic clients because it may create undue stress in trying to verbalize substance abuse challenges while balancing social skills deficits. On a positive note, autistic clients may have higher levels of program completion once they decide they will enter treatment and may have greater potential for improvement because they were operating from a greater initial social deficit and theory of mind and mentalizing skills can be learned (Kaltenegger, Philips, Wennberg, 2020). 50% of clients drop out of SUD treatments before completing their programs, and autistic clients are more in need of individualized treatments. This is partly due to the fact that autistic folks with SUD tend to have more extensive and severe needs than their neurotypical peers, often involving not only medical, psychological, and social support, but also housing, transportation, education, and legal support (Helverschou, Brunvold, Arnevik, 2019).
Autistic women often have increased needs than autistic men as they have increased risks of mortality, incarceration, and co-morbidity. There is a need for more research in this subgroup and how best to serve them (Olsson, Fridell, 2018). As clinicians working with SUD in the disability community may be working with a triple or more diagnosis and the client needs can be very intense, it is especially important to work collaboratively with other professionals. Collaboration with psychiatrists can be especially important to provide appropriate pharmaceutical interventions and ensure proper care and support around those pharmaceutical interventions. Often times, treatments should be prioritized and the clients understanding of what each treatment is for should be scaffolded so they are able to understand and be an active participant in their treatment path (Lakhan, 2020).
One treatment method that shows promise for autistic individuals with SUD is adapted Cognitive behavioral therapy (CBT). Adaptations in CBT for autistic people include using familiar routines and activities with structured roles between the client and therapist to maintain predictability and structure that can help reduce anxiety. Similar to working in other sensitive groups, it can be helpful to set-up community guidelines for behavior of both client and therapist during treatment and set goals for treatment and decide on the treatment plan together. (Helverschou, Brunvold, Arnevik, 2019). I have used CBT for myself and autistic students and have found that it feels more tangible as a therapy option. CBT appeals to my autistic brain to have concrete tasks and explanations why this may work and seems to have more clear response goals, which I found helpful to have.
Relapse prevention for autistic individuals and substance abuse
To prevent relapse with autistic clients, therapy needs may need to be more extended than for a typical individual in substance abuse treatment. Therapists treating autistic people with SUD have said the therapy was more demanding than work with neurotypical SUD clients; they needed to be more structured, use more directive therapy strategies, and SUD treatment took more sessions. Treatment needs are partially so much more demanding because many autistic clients needed education about autism itself to understand how and why their brains operate differently than those around them, education about drugs to truly understand the scientific results of specific drugs on the brain and body, assistance navigating their social contacts and pro-social coping mechanisms to use when experiencing stress, housing assistance, leisure activities support and facilitation advice, and employment support to be able to function in their professional environment without relying on substance use to self-medicate. Some autistic clients tended to view their therapists as their friend and there was a higher-than-average emotional involvement with autistic clients that suggests a need for supervision and collaboration when working with autistic people in recovery (Helverschou, Brunvold, Arnevik, 2019).
It is helpful for autistic clients with substance abuse disorder to be treated with integrated mental health support and substance abuse treatment instead of a fragmented separate care for each disorder. Finding a practitioner who can work with other specialists, autism experts, and psychiatrists and collaborate on appropriate care is essential for autistic people to receive effective support (Kronenberg, et al., 2015). Many autistic people have psychological care needs that bleed into physical care needs and care is most effective when all parties are operating with the same information. For example, I once became very sick with serotonin syndrome because I was on an anti-depressant and took two triptan migraine pills, not realizing these prescriptions could have a drug interaction. Clients need to be part of their therapies and feel included to prevent relapse.
Treatment for autistic individuals with SUD should focus on helping the client learn coping and socialization skills so they can live their life to the fullest potential and reduce their troubling symptoms, so they are better able to function. Because autism affects so many areas of life that are also impacted by substance abuse, but the added issue of social impairment means that autistics often turn to substance use to help their social functioning, but substance use can have much more dramatic effects on an autistic individual because they cannot process their social interactions with the fluency of a neurotypical person, often resulting in significant support needs in mental health, financial literacy, unemployment, family and social interactions, adult living skills such as maintaining a home, activities, and sexual health support (Kronenberg, et al., 2015).
Another component to consider for autistic people with deficits in social-emotional reciprocity and communication is that motivators that seem clear to the average person may not be clear to an autistic person and they may need potential harms explained to them. For example, an autistic youth caught for drug dealing did not immediately understand the harm that using drugs could have on minors because they did not have the ability for easy empathy and needed to have the effects described to them before they grasped the problem. For true rehabilitation, extinction of substance use, and social integration, explicit teaching of theory of mind and mentalizing skills is necessary (Riolo, et al., 2021).
I believe that the most important components of effective care for an autistic person with substance abuse disorder are education about the exact and real functions of substance use on the brain and body, physical care support that may include prescriptions for anxiety and/or depression, which are rampant among adult autistics of normal intelligence, and especially common among adults autistic people with substance use disorder, emotional support in self-regulation and assistance in understanding social roles, expectations, and support to understand and meet these expectations, and traditional therapy of some sort to help the individual process through their experiences and find a way to feel grounded and to live a life of purpose. My biggest problems came from not knowing I was autistic and being desperate to “be normal” and not feel the constant anxiety of hypervigilance that was my life then. Help autistic people live their lives and help them find the meaning in their lives that allows for them to enjoy the process.
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Hello friends! I would like to publish writings from myself and other people with autism as snapshots of how autism has affected them, since there are so many misconceptions and confusions about adults with autism.
Some background: I completed a 12 unit certificate program to be able to serve autistic students and am angry at how the program focused only on little boys as autistic and completely left out adults, the trans autistic population, and girls/ femmes/ women autistics. I am currently pursuing a PsyD to do more research on autism and gender.
Please contact me if you would like to add a story! If so, please send me your piece, publish name, title, and an image (can be a picture related to your content, your picture, an autism meme, etc).
I am interested in publishing this collection, because people don't know enough about us (but sure do assume a lot). Also on Facebook!
Lisa Macafee, autistic counselor with a hankering for social justice.