Experts say that there wasn’t a lot of good music created in the 1980s. But I’ve found that two songs from that decade provide good advice for raising a child with autism: Steve Winwood’s “Roll With It” and Kenny Loggins’ “Don’t Fight It.”
Our son Greg was born in 1987 and diagnosed with autism in 1990 at age 2 ½. Upon receiving the diagnosis, we went into a frenzy. The internet wasn’t much back then, so we used “old school” methods like going to the library, making phone calls and joining a support group. We were willing to try almost anything. We had many consults with speech therapists, psychologists and other professionals. We gave Greg a vitamin B-12 supplement. We tried a tactile stimulation of brushing his skin. We got him additional speech therapy outside of the school setting for about five years. We tried to find medications to improve some of the behaviors that hindered his development. By the age of ten, his behavior moderated, and we stopped searching for treatments, relying instead on the public school system, summer camps, caregivers, and our own efforts to help maximize his capability.
The years went by and Greg progressed, often with two steps forward and one back. Now he’s 24, holds a part-time job, attends an adult day services program, and is doing just fine. His transition to adulthood and the working world was the impetus for me to write a book entitled What Happens Next?.
As I gathered my thoughts for the book, I felt compelled to write down a handful of opinions I’d formed after 20+ years of living with a person with autism. Here’s one of them:
I’m really uncomfortable with the notion that we’re fighting autism. We may be fighting to find the cause and cure, but not the condition itself. It’s common to hear that someone fought a battle with cancer or another disease. But autism isn’t a disease. It’s organic. It’s part of who Greg is. We haven’t fought autism all these years. We’ve adapted to it. In turn, we’ve helped Greg adapt to the confusing world he lives in.
Autism awareness is at an all-time high. Research is progressing. We have good momentum. We must continue to push for early diagnosis and early intervention. Yet, I can’t help but think that we’ve got a blind spot: adults with ASD. To be sure, there are people who are actively working on transition and adult services. There are also some organizations focused on this issue. Even so, I don’t feel that there is enough intensity to address the issue of services for adults with ASD.
As our country recovers from the recession, federal, state and local governments face very tough times. Special education, adult services and Medicaid might not be immune from the budget ax. This is a recipe for big trouble – a growing population that needs to receive services from a shrinking resource pool. It’s time for the autism community to join with a wide range of professionals to shed some light on the topic of adult services. Autism is, after all, a lifelong neurological disorder.
You can learn more about Greg and our family’s journey through stories and experiences like these in the book What Happens Next? Raising a Son with Autism: A Father’s Story and on www.whathappensnextbook.com
Rick Schostek
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