I used to work for an autism treatment program, but now I work on an addiction and detox unit. Recently, I was sent a video from a series posted by the Des Moines Register titled “The Lost Boys of Heroin.” The video featured an anguished mother telling the story of her son’s overdose, summed up by the caption: “Richard, was a bright young man who loved fixing computers and navigating the web. He began using heroin to cope with the social stresses that came from having Asperger’s.”
Twenty years ago, the “autism epidemic” was making headlines and felt like a crisis. The Centers for Disease Control and Prevention released graphs illustrating steep increases in autism spectrum diagnoses (ASD). Articles, documentaries, news specials, and websites devoted to the autism epidemic dominated the cultural landscape. Celebrities, politicians, doctors, and writers publicly shared their or their children’s diagnoses. The increase in ASD had our attention, and we argued over vaccines, diagnostic criteria, and gluten-free diets. Meanwhile, prescription opioids and cheap potent heroin infiltrated our small cities, rural towns, and upscale suburbs. It is not a surprise that the autism and opioid epidemics intersect. If the rise in autism diagnoses was thought to be a crisis 20 years ago, we may be about to experience the second wave of that crisis.
Those diagnosed during the beginning of the “autism epidemic” are now adolescents and young adults. Their potential impact on underprepared communities has been referred to as a tsunami crashing toward overburdened and underfunded social services. Outcomes for most adults on the spectrum are dismal, and providers and policymakers are now scrambling to identify and implement appropriate assistance. Despite much-publicized success stories of optimal outcomes, early interventions rarely eradicate the need for substantial support as individuals with ASD age. Substance use presents a unique risk for this group. A recent quantitative study of over 25,000 Swedish subjects found that adolescents and adults with autism are twice as likely to develop a substance use disorder compared to the general population. Individuals with autism have significantly higher rates of anxiety and depression than their neurotypical peers. Struggles with mental health along with a desire to fit in socially, sensory sensitivities, and communication challenges might lead anyone to find solace. Yet despite the rumblings of a pending tsunami, we are not educating the autism community about the high risk for substance abuse.
Why is this? Perhaps aspects associated with an autism diagnosis such as compromised social abilities, rule-bound behaviors, sensory issues, and a history of sheltered school and living environments might lead family members and providers to assume a limited desire to use drugs or a lack of access to them. One parent of a 10-year-old with autism shared: “He won’t even touch unlit cigarettes or empty wine bottles for fear they might harm him—I doubt he would ever use drugs/alcohol if given the opportunity.” Often it is assumed that those with an ASD who have a concurrent substance use disorder turned to drugs or alcohol because they were undiagnosed or misdiagnosed. For instance, in the 2008 book Asperger Syndrome and Alcohol: Drinking to Cope, author Matthew Tinsley (an adult with autism) and his therapist/co-author Sarah Hendrickx suggest he turned to alcohol to self-medicate undiagnosed Asperger’s syndrome. Certainly there are YouTube videos and web forum postings to support this assumption. An adult who received his autism diagnosis well after his college years told me that in college, “Once I started drinking I didn’t want to stop because the effect was boy this is different and I sure as hell wanted different.”
But according to the numbers and online postings, it is not just those with late ASD diagnoses who grapple with substance use. Although early interventions can decrease behavioral issues, increase social interactions, and raise IQ scores, for the most part the interventions do not eliminate autism. Applied Behavioral Analysis and other behavioral strategies certainly make it possible for toddlers with autism to enroll in mainstream classrooms. This is a vast improvement for individuals who in the past might have been held back or placed in school settings that underestimated the student’s abilities. But in inclusive educational settings, students with ASD usually have a desire to socialize and develop peer relationships, and thanks to early interventions, they may also be more able to. Essentially, the gains also bring risks. The question is whether mitigating characteristics of autism also reduce possible protective factors for developing a substance use disorder.
As they age these same students, like their neurotypical peers, want to maintain relationships but may have difficulty doing so. The self-advocate and author Maia Szalavitz remembered: “when my health teacher said that peer pressure could push you to take drugs, what I heard instead was: ‘Drugs will make you cool.’ ” Mainstreaming could certainly increase the desire to fit in and wanting to fit in is one of the top reasons adolescents start using drugs and alcohol. As one participant in a study about substance use and ASD put it: “It just takes the edge off the nasty feeling you get when you’re trying to talk to somebody, that you feel stupid. You don’t get that if you’ve had alcohol.” Another protective factor–turned–risk factor of inclusion is that having more friends can expand access to drugs or alcohol. More often than not, the parents I talked to who had children on the spectrum were confident their child did not have the wherewithal to acquire and administer substances. But as peer relationships increase, drugs and drug use may offer a much desired form of adolescent social capital for a teen with autism.
There are risks after young adults age out of school, too. Plenty of studies, statistics, and stories document the experience of twentysomethings on the spectrum “falling off a social cliff” after mandated K–12 services end. Post-secondary completion rates are low. This means that after kids age out of school, “there are high levels of unemployment associated with ASD, leading to boredom, frustration and a sense of uselessness and under-achievement,” wrote autism author and clinician Tony Attwood in the forward to a book I co-authored on the topic.
Providers and family members in the autism community often assume heightened sensory stimulation would deter someone with autism from using alcohol or drugs but, as with the neurotypical population, the effects of drug use can outweigh aversions to drinking, inhaling, snorting, or injecting. In fact, many with a dual diagnosis of autism and substance abuse report they turned to drugs and alcohol to dampen their sensory hypersensitivities. As one YouTube commenter wrote: “The main reason I use is self-medication—opioids take away the symptoms of hypersensitivity associated with Asperger’s and make life far simpler.” As a patient of mine once said about heroin: “They don’t call it a fix for nothing.”
Tsunamis hit with little warning. But we can prepare. We can elicit the input of those with autism and substance use diagnoses, their families, and their communities. We know early interventions are effective, but we may need to adjust our expectations. We may need to consider that the immediate success of a program may, over the long run, introduce unanticipated problems. By offering ongoing social, psychological, educational, and vocational interventions, we could offset the potential inadvertent risk factors that inclusion may bring.
Those currently affected by both ASD and SUD diagnoses either independently or concurrently have the right to receive comprehensive wraparound services such as housing opportunities, social enrichment activities, dedicated legal advocacy, educational and vocational assistance, as well as targeted research addressing prevention, treatment, and maintenance. We need to offer a healthy means to acquire social capital such as worthwhile employment, housing, and recreational activities. Doctor’s offices, schools, and autism providers need to routinely screen for substance abuse. One job coach from the autism community confessed that “drugs weren’t on our radar” and was genuinely surprised when clients regularly failed their employers’ drug tests. Effective preventative education that addresses drug and alcohol use directly and without hyperbole needs to be offered to all children starting around age 12. Since it was assumed that people with autism weren’t at risk, there are currently no tailored treatment options for those with co-occurring autism and substance use diagnoses. Clearly we need more research so that appropriate treatment is available.
Twenty-plus years ago, the parents of toddlers on the spectrum fought for more services and early interventions to address their children’s autism. Those toddlers are grown and advocating for themselves now. As one commenter wrote on a YouTube video page: “I was addicted to opiates because of aspergers [sic]. They took all the worry away…” The opioid epidemic continues to ravage communities including the autism community. Adolescents and adults should not risk their lives in order to alleviate their worries.