Critter Corner: What Happens to Adults with Autism Who “Age Out”?

Dear Bebe,

There is a lot of funding for research about early diagnosis and early intervention for children with autism spectrum disorder (ASD). However, there doesn’t seem to be much attention paid to adults with ASD. My daughter is 18 and has ASD. What information can you provide to help someone who will be “aging out” in the next 3 years? Thanks for your help!

A. Jean Goutt

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Dear Jean,

The problem of “aging out” of services is a real hurdle every parent or caretaker of a child with autism inevitably faces.

Children on the autism spectrum are eligible for special education services while they are in school, and services can last until age 21. However, it becomes much more difficult to find help and services once kids age out of eligibility for special education. Research shows that after high school, most young adults on the autism spectrum do not have jobs, career training, or additional educational opportunities. Autistic adults also struggle to find independent living arrangements, maintain friendships, get involved with community activities, or have enough money to pay for their needs. Many autistic adults continue to live with their parents, raising concerns about what happens when the parents pass away. This is why Special Needs Trusts are so important!

There Really Isn’t Enough Attention Paid to Adults with ASD

According to Paul Shattuck, director of the Life Course Outcomes Research Program at the A.J. Drexel Autism Institute in Philadelphia, and a member of the scientific council of the Organization for Autism Research, there is not enough attention is paid to adults with autism.

By Shattuck’s latest research estimates, 70,000 to 80,000 or more autistic youths per year will turn 18. “That’s close to a million people over the next decade,” he said, highlighting an urgent need for research to address the health and well-being of autistic adults. “We’re expending a lot of effort for very young children with autism, but as a society we kind of drop the ball once these young people become young adults,” he said. “There’s really not much there for autistic adults or their families in terms of services or even thinking how to support autistic people across the lifespan.”

Some Tools for Young Adults with ASD

Autism Speaks does a good job providing helpful resources for adults with ASD. According to Autism Speaks, “it is part of our mission to ensure that all people with ASD and their families have transition plans that result in more independent adult life that is meaningful to the individual, along with effective interventions, services and supports throughout their lifetime.” They offer tools that can assist your daughter in all facets of adult life, including employment resources for job seekers, employers, and parents, housing and community living resources, tools for transitioning, and online networking groups. Click here to access these resources.

Hope this is helpful,

Bebe