Many Young Adults With Autism Also Have Mental Health Issues

NPR <email, October 1, 2017

Tara Haelle

Nick Lowndes/Getty Images

College involved "many anxiety attacks and many trips home" for Daniel Share-Strom, an autistic 27-year-old motivational speaker in Bradford, Ontario. It wasn’t just the challenge of organizing his assignments and fighting the disability office for the extra time he needed for tests. It was also managing all the aspects of daily life that most people not on the autism spectrum take for granted.

"Relationships are so much harder to understand or initiate when by default you don’t really know what certain facial expressions mean or what certain actions mean," Share-Strom says.

Young adults on the autism spectrum are more likely to also have been diagnosed with a psychiatric condition, such as depression, anxiety and attention deficit hyperactivity disorder (ADHD) than are typically developing people or those with other developmental disabilities, a study finds. And managing those multiple conditions can make the transition to young adulthood especially difficult.

It’s not clear how much biological factors may contribute to the higher rates, but Share-Strom definitely sees environmental factors playing a major role.

"People with autism aren’t immediately born anxious or with depression," Share-Strom says. "The world is fundamentally not built for us, and people are always judging and trying to change you, whether they have the best intentions or not," he says. "Of course that’s going to cause a higher rate of anxiety and depression and even suicide rates. I’d be surprised if it didn’t."

That makes providing resources for these young adults all the more important during that transitional period.

"When it comes to mental health diagnoses and use of psychiatric services, there’s a really strong need for the entire developmental disabilities community, but it’s an even bigger need for folks on the autism spectrum," says Yona Lunsky, a senior scientist at the Centre for Addiction and Mental Health in Toronto and coauthor of the study. "I think sometimes people will dismiss something as being part of autism when, in fact, it’s not," she adds. "There are people with autism who don’t have psychiatric issues."

Lunksy’s study is not the first to find a higher prevalence of mental health conditions among those on the spectrum compared to those with typical development. But it is the first to compare autistic young adults to those with other developmental disabilities. It also uses a standard method of gathering data, relying on diagnostic codes in administrative health data instead of using surveys.

Their data came from two groups of young adults, ages 18-24, in Ontario, Canada.

One group included 5,095 young adults with an autism diagnosis and 10,487 people with another developmental disability diagnosis and no autism diagnosis. (Those with both were excluded.) The other group was a random selection of 20 percent of young adults in Ontario without a developmental disability diagnosis.

They chose age 18 as a starting place because that’s when people switch from child to adult social and mental services in Canada; they ended at age 24 because Canadians with developmental disabilities usually remain in school until age 22, providing two years of follow-up data. In the U.S., public special education services continue until high school graduation or until age 21 in most states, 22 in some others.

Those on the spectrum were more than five times more likely to have a psychiatric diagnosis than typically developing individuals and nearly twice as likely compared to others with developmental disabilities, the study found.

While 52 percent of autistic young adults had a psychiatric diagnosis, 39 percent of those with other developmental disabilities did and 20 percent of typically developing people did. Those with an autism diagnosis were also more likely to visit the emergency department for psychiatric reasons (8 percent) than those with other developmental disabilities (7 percent) or typically developing (2 percent).

By contrast, non-psychiatric ER visits were similar between autistic and typically developing young adults: 26 percent of those on the spectrum and 25 percent of typically developing adults, compared to 34 percent of those with other disabilities. Those on the spectrum were also less likely to have asthma, high blood pressure or addiction disorders than those with other developmental disabilities.

"We weren’t doing the study to look at mental health," Lunsky says. "It’s just what emerged. Unmet needs have a social cost, so we want to be able to recognize both physical and mental health needs for everyone and get them the right care."

That means recognizing that symptoms and behaviors of depression and anxiety may look different in those with an autism diagnosis than in those without, she adds, and caregivers and providers need to understand that.

Indeed, it is especially important to individualize care for youth on the spectrum, according to Lynn Davidson, a pediatrician and member of the American Academy of Pediatrics executive committee on disabilities.

"Transition for youth with autism is a very challenging process," Davidson says. "It is doable, but it takes a lot of preparation and a lot of time on the part of the families, on the part of the patient and on the part of the providers. The earlier one starts, the better."

Research literature suggests that it’s good to start learning daily living skills, such as laundry, cooking, bathing alone and similar chores, around 12 to 14 years old, Davidson says. But she believes that should start as early as possible, depending on a child’s intellectual, social and mental health disabilities.

"Youth on the autism spectrum may need repetitive modeling and experiences so that they get those skills down and become as independent as possible," Davidson says. Too many families, she says, do tasks for their adolescents long past when the teen could do them on their own. Other youth continue to need support for what might seem like basic tasks, so parents and care providers have to work to learn the boundaries and abilities for each person on the spectrum.