Marina Sarris

Date Published: April 17, 2024

“Mr. B.” wandered the streets all day, and sometimes all night, hoping it would ease his anxiety. At 45, he had an intense interest in history, but no friends to listen to him talk about it. He followed a rigid routine, and changes would add to his anxiety. He also drank. A lot.

He ended up in a hospital for treatment of his alcohol problems, anxiety, and depression. But he left with a new diagnosis, one that was missed during childhood. Mr. B. has autism,¹ and his situation ─ having both autism and substance use disorder ─ is not unique.

A small but growing number of researchers are investigating the old assumption that autistic people rarely use alcohol and drugs, and rarely have problems with those substances. Their task is not easy.

For one, the relatively few studies that exist sometimes contradict each other. Some studies report that autistic people are less likely to have alcohol and drug problems than the general population.^2,3 But other studies say autistic people face a higher risk than others.^4,5

Anywhere from 1 percent to 36 percent of autistic people have drug and alcohol problems, according to a scientific review of more than two dozen studies.⁶ That wide range in results may be explained by the different ways the studies were conducted and how the participants were selected.

By comparison, 17 percent of all teenagers and adults in the United States have substance use disorder, according to the 2022 National Survey on Drug Use and Health.

“We really don’t know much about substance use in the autistic population,” says Anthony Spirito, Ph.D., a psychiatry professor at Brown University and expert in substance use. He is co-leading a team that is researching substance use among autistic teens and young adults, some of whom are participants in the SPARK autism study.

The Changing World of Autistic People

As Spirito and others have noted, times have changed for autistic people. Many years ago, autism was a rare diagnosis, reserved primarily for people with significant support needs. They often went to different schools and workplaces than people who did not have autism. They may not have been exposed to alcohol and drugs.

But in recent decades, a growing percentage of people have been diagnosed with autism across a wide spectrum of needs. “From a scientific point of view, the population of people we are diagnosing with autism is a lot different from the 1970s and the 1990s as well,” says autism expert Stephen Sheinkopf, Ph.D., a University of Missouri professor who is leading the study with Spirito and Kristina Jackson, Ph.D., of Rutgers University.

Today, autistic people often go to the same schools, colleges, and workplaces as people who don’t have autism.

“In the last decade or two, there have been major shifts in the way people with autism are viewed in the community and how teenagers and young adults with autism are mainstreamed into activities,” Spirito says. “They are going to be exposed to substance use where they might not have been before, when some of these older studies were conducted. For that reason, we wanted to conduct a more contemporary assessment study” of substance use in young people on the spectrum.

Spirito, Sheinkopf, Jackson, and their team are enrolling autistic people ages 12 to 24 who do not have intellectual disability. They are following them as they get older. “It’s important for us to understand what the current substance use is and the reasons for that use in this population,” Spirito says.

Preliminary results show that older autistic teens and young adults who are verbal drink alcohol at about the same rate as their non-autistic peers. The story is different, however, for younger autistic teens; their substance use is lower than other teens. The study is ongoing.

Misperceptions About Autism and Substance Use

The public, along with many healthcare providers, have not focused on alcohol and drug use among autistic people, says Sam Gardner, an autistic graduate student at Columbia University who is researching the topic.

“That’s also part of the problem: people don’t think it’s an issue, people don’t think that autistics develop substance use disorder. Combatting that perception is an uphill battle in the U.S.,” Gardner says.

Part of that perception is based on stereotypes of both conditions, according to social worker Elizabeth Kunreuther of the University of North Carolina medical school. Autistic people are seen as “innocent and deserving,” while people with substance use disorder are seen as “unworthy,” she says in her article, “Autism Spectrum Disorder and Substance Use Disorder: A Dual Diagnosis Hiding in Plain Sight.”⁷

Autistic people are more likely to have the conditions that are linked to substance use disorder, namely anxiety, ADHD, depression, and having been bullied, Kunreuther points out. So why would substance problems be rare?

Learning From Autistic Patients

Agnieszka Butwicka, M.D., Ph.D., a child and adolescent psychiatrist, became interested in researching alcohol and drug use while working with autistic teenagers. “I observed that many of my autistic adolescent patients reported misuse of alcohol and other substances,” says Butwicka, assistant professor at the Karolinska Institutet in Sweden. “Some of them use it to diminish their general anxiety, social anxiety, and enhance social skills.”

Butwicka led a team that studied the medical and other records of about 27,000 autistic people and 1.3 million non-autistic people born in Sweden over a 35-year period. The team defined a substance-related problem as having substance use disorder, a substance-related death, an alcohol-related disease, or a conviction for a drug crime.

The autistic people who did not have intellectual disability or ADHD were two times as likely to have substance use problems as the general population. Having ADHD raised that risk for autistic people even higher. Their parents and siblings also had a higher risk than other people. This suggests a genetic and/or environmental link to substance problems, the study says.⁴

Similarly, a records study involving 33,000 youth in Taiwan found that those with autism had a higher risk of substance use disorder than non-autistic youth. This study also found that the risk of death was higher for autistic youth with substance use disorder than it was for their non-autistic peers with substance use disorder.⁵

Are Drinking and Drug Use Actually Less Common in Autistic People?

Other studies, however, have found that autistic people have a lower risk than the general population. Unlike the large population-based studies from Sweden and Taiwan, which rely on medical records, these studies often involve smaller numbers of people from autism clinics.

One study, for example, involved 230 teens and adults from an autism clinic in the Boston area. Researchers found that the autistic people were less likely to have substance use disorder when compared to non-autistic people and people who had ADHD. Autistic youth who developed an alcohol or drug disorder did so at older ages than these other groups.²

Other studies found less overall drinking and less binge or hazardous drinking in autistic people than in their non-autistic peers. One study involved 16- to 20-year-olds in SPARK,⁸ and the other surveyed an international group of 2,400 people from ages 16 to 90.³ Drinking is considered hazardous when it can hurt someone’s health and safety. A medical records study in California also found less “alcohol abuse/dependency” in autistic adults.⁹

What About Substance Use Among Undiagnosed Autistic People?

Most studies start with people who already have an autism diagnosis. What about undiagnosed people like Mr. B, who may have been born before childhood autism screening was common or whose autism traits were missed when they were young?

Some researchers in Boston began their study at a drug treatment clinic, with 69 teens and young adults seeking help for alcohol and drug problems. They gave an autism survey to those youth. A sizable number ─ one in five  ─ scored in the moderate range of autism traits.¹⁰ That is almost 10 times higher than the overall percentage of autistic people in the U.S.

Are there many undiagnosed autistic people in substance treatment programs or attending 12-step meetings such as Alcoholics Anonymous or Narcotics Anonymous?

Researchers do not know. Drug and alcohol treatment programs do not routinely screen their clients for autism, and 12-step programs do not collect such information.

Do Autistic People Drink for the Same Reasons as Others?

Some researchers are examining whether autistic people drink or use drugs for the same reasons as non-autistic people.

A study of underage drinking among SPARK participants found some differences. Autistic youth were less likely to drink for social reasons, to have a good time, and to fit in than their peers, according to that study. But they were just as likely as their peers to drink because they thought it would help them cope with problems.⁸

In a different study, a 19-year-old autistic woman explained why she drank: “It’s a good crutch to compensate for all of the other difficulties that I have in my life…. It helps me make up for the difficulties that I have like reading other people and having trouble in social situations and stuff.”¹¹

Gardner, the autistic graduate student, became interested in the topic through personal experience. They began drinking at 12 years old to cope with difficult circumstances. Gardner lived with friends’ families or on the street, and drinking was a way to escape.

When Gardner entered a treatment program for drinking, they found that some aspects of the program, including group therapy, were difficult. For example, staff misinterpreted the many questions that Gardner asked about the logic and theory behind the program. Staff saw Gardner as argumentative and unwilling, rather than as an autistic person searching for information. “Everybody was kind of baffled that someone with autism would need something a little bit different,” they say.

After beginning recovery, Gardner saw a need to create substance use programs that considered the needs of autistic people. “There’s no program in this country that I could find that looks at these two identities – autism and substance use disorder.” Some researchers have also noted the need to modify or design drug and alcohol treatments for autistic people.¹²

“A Hunger for Intervention”

Researcher Laura Graham Holmes, Ph.D., who worked on the study of underage drinking, is among those creating and studying an online group intervention for autistic adults who use alcohol, drugs, or nicotine. Researchers worked with autistic adults to design and run the intervention, which is ongoing, says Graham Holmes, assistant professor at CUNY Hunter College Silberman School of Social Work.

“Ideally, what we would want is some really deep, long-term research about substance use disorder in autistic people to help us understand the kind of interventions they need, but we also have autistic adults who need an intervention now,” she says.

The response so far has been positive. “There was a hunger for intervention and also for ongoing support and connecting with other people around being autistic and having challenges with substance use,” she says.

Interested in joining SPARK? Here’s what you should know.

Photo credit: iStock

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