Young Adults With Autism Deal With Mental Health Issues, Too : Shots - Health News Young adults with autism are more likely to have anxiety, depression or other diagnoses than people with other disabilities. And that can make transitioning to adulthood more challenging.
NPR logo Many Young Adults With Autism Also Have Mental Health Issues

Many Young Adults With Autism Also Have Mental Health Issues

Nick Lowndes/Getty Images
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.

Kyle Echakowitz repeated 12th grade, but he still found the first year of college overwhelming. Courtesy of Kyle Echakowitz hide caption

toggle caption
Courtesy of Kyle Echakowitz



"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."


"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."








"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."




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.


Even more important is for parents to ensure their children have the proper diagnosis, says Jodi Echakowitz, a mother in the Toronto suburbs whose 20-year-old son Kyle was initially misdiagnosed with social anxiety disorder. He received a correct diagnosis of Asperger's (now included under the autism diagnosis umbrella) in first grade. Diagnoses of generalized anxiety disorder, ADHD, a learning disability and depression followed over time.

"A lot of parents with younger kids remain in denial and feel it's a detriment to put a label on their child, but that does a disservice to their child," Echakowitz says. "I say, embrace your child, embrace their differences — it's not necessarily a negative thing — and once you understand the clinical diagnosis, then you can actually provide them with the support and services they need."

Kyle stayed in school for a second 12th grade before college to ensure he had the support he needed, which included social workers, social skills coaches and the school board psychologist. But the transition was still rough.

"In high school, I was given a lot of accommodations and leeway, and in college, I didn't get that," Kyle says. "In high school, I'd never failed a class, and I failed two classes in my first semester of college, easy ones, because the sheer thought of just how much work there was in other classes prevented me from even thinking about work in the easy classes."

Kyle agrees that getting his diagnoses early on, which opened up access to support and services, was crucial to transitioning to college at all. Just as crucial, however, is listening to what autistic young adults say they need, he says.

"Oftentimes parents, psychologists and experts who are not on the spectrum are the ones consulted, but it's really important that the message becomes 'nothing about us without us,'" Kyle says. "For those who are nonverbal, that's also important — giving a platform to those who don't speak."

That platform could take various forms depending on each child's needs, but that's part of planning for transition to adulthood, determining what those needs and supports are.

In the US, formal transition planning through the school system is required, starting with an Individualized Education Plan (IEP) at age 14. By age 16, the IEP legally must include information on transition services, such as postsecondary agencies and other community services, the student needs to successfully move into adulthood. But those are rarely plentiful. Resources such as Interactive Autism Network, GotTransition, The Arc, the National Collaborative on Workforce and Disability/Youth, Wrightslaw, the National Center on Secondary Education and Transition and AAP resources can help.

"It is very hard to get services when patients turn to the adult world because there's not the funding nor the orientation toward youth [with ASD]," Davidson says. She noted that subspecialties in pediatrics, such as neurodevelopmental disabilities, lack parallels in adult care fields. But the numbers of autistic people reaching adulthood is only going to grow. The CDC has reported a steady increase in autism diagnoses; currently, one in 68 children have the diagnosis.

"There needs to be an effort to train behaviorists, psychologists and psychiatrists to be available and accepting of youth with ASD and to be able to handle them in the offices where they see their patients," Davidson says. "Whether that means funding from a government source or funding to do the training for adult providers, that's essential."

She also highlighted the need to provide young autistic adults with social skills training and support related to the nuances of social hierarchy and work climates that typically developing people tend to pick up on naturally.

"That's something youth with autism don't automatically understand, and it often can cause major disruptions and firing in job situations," Davidson says. "The use of job coaches, who can help those kids with autism adjust to the social stress and milieu of a work environment, and ongoing counseling during the young adult transition, is very, very helpful to youth."

Share-Strom says it took him years to get his current position, a communications coordinator at Community Living Ontario, because so many interviews ended early when he couldn't maintain eye contact or autism came up. He talks about these experiences in his TED talk "Dear Society ... Signed, Autism."

"The thing I found most challenging about autism is that when you're growing up, even people with the best intentions who are trying to help you are always telling you you're wrong, that your basic instincts are incorrect, so you learn not to trust your own judgment," Share-Strom tells NPR. "One of the biggest difficulties with transitioning to adulthood is trying to realize where you've been correct versus where you need to change, where the boundaries are between what you need to do to fit in and what other people need to do to accept certain things that are a part of who you are."


Correction Oct. 2, 2017

A previous version of this story incorrectly spelled Yona Lunsky's last name as Lunksy. It also incorrectly said she works at York University. She is at the Centre for Addiction and Mental Health in Toronto.