Up until recently, substance use disorder was considered rare among those on the autism spectrum.
Clinical instructor at UNC’s Addiction Detox Unit in WakeBrook in Raleigh Elizabeth Kunreuther and faculty member at the Carolina Institute for Developmental Disabilities at UNC Ann Palmer decided to research and write a book about the topic but found little information on the subject.
Kunreuther says at first they weren’t sure they even had enough information for a book.
“As we started researching after the initial ‘there’s not enough for a book here; we can’t do this,’ we realized there was a real need,” Kunreuther said. “We saw all over the internet, really we noticed first were the addiction treatment centers were catering to people with autism unbeknownst to us so it was already happening in the community and nobody seemed to be addressing it.”
The book, Drinking, Drug Use and Addiction in the Autism Community, uses current research and personal accounts from individuals with autism to explore why addiction is more common among individuals on the autism spectrum than it is within the general population, and investigates how addiction and autism affect one another.
“We were, first of all very appreciative when people would share their personal experiences as we have a friend who allowed us to interview him who is someone on the spectrum and an alcoholic,” Palmer said. “And he described his personal experiences starting to drink in college, and it just meant a lot to us to hear it from somebody who could actually talk about what his struggles were.”
Kunreuther says much of the work in the book is anecdotal and at first was not evidence-based, which was initially a concern. But while working on the book, a study was released in Sweden showing Kunreuther and Palmer’s research to be true.
“They had a sample size of 27,000 people with autism or on the spectrum, and they found that people with autism were double the risk for developing a substance use disorder.”
Kunreuther says that in many cases people consider those on the autism spectrum to have “protective factors” that would prevent drug use – sensory issues, rule bound behaviors, social issues and self-contained environments, which is why the problem is often overlooked.
“I think we’re all sort of victims of infantilizing people with disabilities, particularly developmental disabilities, so that you don’t think of substance abuse and disability in the same sentence sometimes,” Kunreuther said. “And I think we were guilty of that as well; we were so surprised, and we shouldn’t be.
“This is a group like anybody else who are under pressure and probably under more pressure to fit into a neurotypical world every day, having to socialize at work or looking for work or try to fit in with their classmates, and this is a lot to ask of people.”
According to Palmer, individuals on the autism spectrum may turn to substances to deal with stressors, anxiety, depression or sensory issues and calls for collaboration from people in both fields.
“That’s one of the main reasons we wrote the book was to raise that awareness,” Palmer said. “To remind people that things look a little different now for adults on the autism spectrum than what they were 20 years ago and that there are going to be more overlap with the accessibility to drugs and alcohol.
“If you have a child on the autism spectrum, remember to be talking about the risk of substance use. Don’t assume that our kids are not going to be exposed to it or make those choices and that we need to be talking about it early, before they’re adults.”
Last week the authors gave a presentation and signed books at Quail Ridge Books in North Hills.
The book is being published by Jessica Kingsley Publishers and is now available for purchase at any major book retailers.