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Autistic Youth Speak Out on Adulthood

Author: Anne Kirby

The teen years can be fraught with emotion, but this difficult period is also a time of exploration and independence as adolescents begin to plan for the future. This transition is particularly demanding for autistic youth, who must navigate the additional challenges of assimilating with their peers, succeeding in school, and developing relationships with family and friends. A new study by researchers at University of Utah Health spoke with autistic adolescents to learn first-hand their own views on entering adulthood. The results are published in the premiere issue of the journal Autism in Adulthood

“Autism is often studied as a childhood disorder, but these kids grow up to be adults,” said Anne Kirby, PhD, OTRL, assistant professor of Occupational Therapy at U of U Health and first author on the paper. “Previous studies showed that during the transition to adulthood, autistic youth often fail to thrive, having trouble finding or maintaining employment and engaging socially.”

Kirby and her collaborators interviewed 27 autistic youth, aged 12 to 17, to understand how they perceive adulthood and prepare for the future.

“I think it is important to engage the youth in conversation about their own lives,” Kirby said. “Asking these questions provide us an opportunity to open doors to develop effective interventions.”

What did these kids have to say?

In response to the question “How will you know when you are an adult,” one respondent stated, “when you are required to make all of the decisions on your own.” In general, the participants often equated adulthood with productive activities, such as having a job, caring for self and others, and handling difficult situations.

In addition, most adolescents saw achieving adulthood through a step-by-step process. One participant stated, “I am going to have a puppy child before a real child.” Several participants aligned their future plans to mimic family members, seeking out similar career opportunities. Participants also spoke favorably about employment characteristics when discussing their future job opportunities. One participant stated, “I’m kind of interested in going into the construction industry because you get all the big toys there, but in robotics you get all the cool toys.

“There was an idea that people with autism were going to be very rigid in their thinking, but I was impressed by range of ways that they talked about adulthood,” Kirby said. “I want to find a way to harness these conversations to help autistic adolescents find careers that might be exciting or interesting to them.”

The project confirms that adolescents’ voices, interest, and abilities should inform future interventions to support autistic youth and their families during this critical transition to adulthood. The results suggest that future interventions should consider a timeline to connect seemingly isolated goals, such as graduation, to long-term goals of a future career as the youth plan for their adult futures.

 

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Kirby noted that this study is limited by the minimal number of female voices, but she is heartened by the consistency she saw in the responses provided by youth who face a range of strengths and challenges.

“I am so impressed at how articulate the study participants were and the depth of thought that they gave to thinking about adulthood,” Kirby said.

Autism in Adulthood is a new scientific journal that incorporates review and feedback from an autistic adult volunteer before papers are published.