Transitioning to Adulthood with Autism Spectrum Disorder

Autistic young adults from the Washington, D.C., area join students at Milken Institute SPH to share their experiences and areas of need.

An autistic young adult in Sean Cleary's "The Experience of Autism" class uses an alphabet board to communicate. (Harrison Jones
An autistic young adult in Sean Cleary's "The Experience of Autism" class uses an alphabet board to communicate. (Harrison Jones/GW Today)
April 17, 2019

By Ruth Steinhardt

Early this April, Joan Kester delivered a guest lecture on the challenges and pathways for autistic young adults transitioning into the workforce to a class at the George Washington University’s Milken Institute School of Public Health. Dr. Kester, an assistant professor of special education and disability studies at GW’s Graduate School of Education and Human Development, is an expert on autistic young people’s career development and transition to adulthood.

The audience to Dr. Kester’s lecture included another group of experts with an essential perspective: 12 young adults who are themselves on the autism spectrum.

“It’s a shame you have to meet so many requirements” to find employment as a person on the spectrum, one said. He spoke, as most of the young autistic adults in the class did, by pointing to letters on a laminated alphabet board held by an aide.

The visitors were nonspeaking and minimally speaking autistic youths from Growing Kids Therapy Center in Herndon, Va. They are one group of several from the autistic young adult community who, along with their families, have participated in the class all semester alongside GW students.

“The most effective means of education is coming from individuals with autism and their families,” Dr. Kester said. “The biggest impact that I’ve seen is when people speak for themselves, in whatever form that takes.”

Integrating the voices of the population under discussion is a key component of Sean Cleary’s class, “The Autism Experience: A Public Health Perspective.” As a result, his classroom is unique. The audience was not silent during Dr. Kester’s lecture: some attendees engaged in near-constant self-stimulatory behavior, the repeated phrases, noises or motions that, to outsiders, often characterize ASD.

Dr. Cleary, an associate professor of epidemiology, has a background in community-based research, in which academics and the populations they study work together to identify where needs are and where solutions should come from.

“Structurally the class is designed to cover the science of autism, its epidemiology and those aspects,” Dr. Cleary said. “But it also has sessions on viewpoints and more practical issues.”

“This first-of-a-kind class not only highlights the real world experience of autistic young adults, but adds to that interdisciplinary knowledge from autism experts drawn from the GW campus and the nation’s capital,” said Stacey DiLorenzo, executive dean of external relations at the Milken Institute SPH. “The unique content of this course helps our school train the next generation of leaders in the field of autism.”

An estimated 50,000 adolescents with autistic spectrum disorder (ASD) turn 18 each year, and Dr. Cleary said members of the population are underserved in multiple ways as they transition out of pediatric care and seek more independence. Parents, who are often their primary caretakers, also age out of their ability to fulfill that role.

And few health professionals are trained to address the challenges specific to young autistic adults. In fact, Dr. Cleary said, little data exists on autism in young adults and adults in North America, where the disorder is primarily studied in children.

Dr. Cleary’s goals for the class are twofold: to introduce GW students to the basics of community research and also to expose them to the voices of their peers with ASD.

“There are misperceptions about this population regarding their cognitive abilities, whether they have an intellectual deficit or not,” he said. “Once our students hear from these young adults, they realize very quickly how much they contribute to the discussion.”

He hopes that exposure will stick with his students. Participants in the class come from a range of study areas both graduate and undergraduate, and not all are pursuing degrees in the Milken Institute SPH.

“Whether they approach this class from a clinical perspective, a counseling perspective, research, whatever, they can draw on that experience,” he said.

In designing the class, Dr. Cleary spoke directly to college-aged young people with ASD.  What would they like to learn about? What would they like their neurotypical peers to learn about them?

In some ways, he said, the answers surprised him. When he proposed that the class could get away from just discussing autism—reading a piece of poetry, for instance, and discussing that piece as a kind of community-building exercise between neurotypical and neuroatypical students—the autistic students expressed disinterest.

“They really wanted to hear lectures about the science of autism and the statistics around it, to be able to learn from and respond to that,” he said.

Though the class covers a range of practical subjects regarding young autistic adults, including employment, self-advocacy and housing, Dr. Cleary said he hopes future iterations will be able to cover even more. Interviewing participants, he learned that many of them wanted to talk about health care and about relationships, neither of which were able to have dedicated class sessions this semester.

“One of the reasons we’re doing this class is to identify areas that need more attention,” he said. “It’s been invaluable to have these young adults come to the course. Afterwards, I’ll continue to meet with them, to learn what works, what didn’t work, what they’d like to see, and we’ll start really figuring out how to engage them in the research.”

Learning & Research, Ruth Steinhardt