Autism & Adults: What Happens to Us After Childhood

Zoey Giesberg, MSW & Executive Assistant

When talking about autism, the public seems to focus on children. Google “autism” in the images section and among the multitude of puzzle pieces is pictures of children. I completely understand why this is – autism is a developmental disorder that begins presenting itself in toddlers and that creates a need for early intervention so that these children can learn vital skills so they can adjust to the greater world. In fact, the biggest area of autism research revolves around determining causes of autism so that it can be detected in children earlier than toddlerhood to help create more effective interventions.

But autism isn’t merely a childhood condition. Autistic kids grow up just like everyone else and with the current diagnosis rate 50,000 autistic people turn 18 every year. And with the heavy focus on child support and intervention, there isn’t much available to help support autistic adults.

And I can attest to this personally because I had to adjust to adulthood without public support.

I received my autism diagnosis in 1990 when autism awareness and intervention was not especially widespread. And because I was an “unusual” case to that time’s understanding of autism (highly intelligent and adaptable but still developmentally delayed), figuring out what I needed was a never-ending guessing game. When I look back on my life, I think my parents made a lot smart decisions towards my childhood growth. Having a one-on-one aide in my mainstream classes helped me adjust to the academic and social rigors of school, my parents’ encouragement in my participation in extracurricular activities got me to engage with my neurotypical peers in productive ways, and my childhood therapist helped me not only in developing cognitive strategies in development but understand and build on my strengths. It was definitely not a conventional intervention, but it did work. And by the time I graduated high school (where I was in honors and AP classes), I felt like there wasn’t anything in the world I wasn’t able to handle.

That did not turn out to be true. In fact, I needed more support than ever before. And I encountered very little of it in the world I was entering.

It’s been a rough road adjusting to adulthood without reliable or even reliable supports. I faced a world that was hesitant to make allowances and would choose not to if presented with the opportunity. Despite the emotional and practical support of my parents and individual therapy, I found that if I wanted to get support I had to fight for it. My parents and I barely managed to get guaranteed on-campus housing during my college education and had to convince my teachers in undergrad and graduate school to make some allowances for me if I get emotionally overwhelmed. (I thank God every day that most of those professors were willing to do so.) I had a hard time finding and holding down a job because I didn’t feel I could disclose my diagnosis and advocate for myself. And the one social skills group I participated in post-college wasn’t much use to me – despite understanding why it worked, I already knew how to do most of the curriculum. All of this made me I feel on my own and alone.

All of this is why I’m elated FACT understands this issue and thus created the GAP program. They know that autistic kids grow up and there aren’t a lot of support opportunities available for them as emerging adults. The GAP program provides so much to help the transition to adulthood from school support to social and work opportunities. And the most impressive thing about GAP to me is that it creates a real community with the students. I could have used that support as a young adult and I’m happy to see others are benefitting from that.

In this sense FACT has been ahead of the curve. After years of focus on autistic children, there is a newfound media focus on the growing population of autistic adults. In last April’s World Autism Awareness Day, the UN’s “Call to Action” theme was employment and challenged businesses to commitments ending the over 80% unemployment rate for autistic adults. NBC’s Dateline addressed the challenges young autistic adults face upon turning 18.Multiple colleges have created support and inclusion programs for autistic college students.Microsoft just announced a pilot program to hire autistic adults. And there are growing community efforts across America to create businesses that accommodate autistic adults from software development to car washes. And all of this comes from a newfound awareness that autism isn’t just a childhood thing.

It’s crucial we support efforts to help autistic people adjust to adulthood in whatever way we can. In a world where the picture of autism is a child, we often forget that those children change and grow into adults just like everyone else.