LaVida SoCal: Three Dirty Little Secrets about Autism
Finding the right school for our son showed us just how many people are doing it wrong
By Tony Peyser
April being Autism Awareness Month, I’m setting the dials on the time machine back to 1997 — the year my son, then around 11, left Third Street Elementary in Hancock Park. My wife, Kathy, and I were incredibly anxious about where Jeremy would wind up next. The three schools we looked at would prove to be an education in ways none of us had anticipated.
The first school was a special education center on Centinela Avenue. The enormity of this transition for Jeremy overwhelmed me, and I lost it in the principal’s office, an event she seemed prepared for by the ease with which she offered me Kleenex.
I was handed off to an aide to tour the campus. I wandered behind this young woman and wondered how I could ever make the right decisions for my autistic son. I was led into a room that was surprisingly unadorned. I asked, “Why is there nothing up on the walls?”
This was the aide’s unforgettable reply: “These kids don’t notice those things.”
Jeremy’s classroom was covered with artwork which he and his fellow students obviously enjoyed.
I was in a rage that someone could be that callous. However, I smiled and shook her hand, grateful for how her ignorance showed me that I could figure whatever predicament presented itself with regard to my son.
One school down, two to go.
The second school was Paul Revere Middle School, between Brentwood and the Palisades. This visit had a peculiar element to it because it was the school I’d attended many years earlier. Our tour commenced while students were in class. As a teacher walked Kathy and I around and talked about their special education classes, we saw a child — who looked a little like Jeremy — sitting with an adult outside a classroom. The teacher sighed and explained this autistic boy had (at his parents’ insistence) been mainstreamed. However, he was disrupting the class so much that his one-on-one aide frequently took him out of the class and they spent a lot of time outdoors together.
Dirty Little Secret No. 1 about Autism: Sometimes the biggest problem is the parents. We knew ones who were desperate to mainstream their autistic children to make it look like everything was OK and that their kid didn’t really belong in dreaded Special Ed, which didn’t fit into their life-style. To those like them I always say: Get real. You’re not fooling or helping anybody, and your autistic children deserve better.
The third school was in Culver City. Jeremy — who understands pretty much everything but can only say a few words — was being observed with an alarming amount of incredulity by an administrator. This woman not only found Jeremy baffling but behaved as if she had never seen anyone with the autism diagnosis. She obviously didn’t feel he was right for their school.
On the way home, Kathy and I realized what had just happened: This school only wanted the verbal, easier-to-handle, high-functioning autistic kids. Of course they couldn’t say that, but the message was clear nonetheless. It was deeply unsettling to see that there was discrimination afoot even by those working to help people in this population.
This would not be our last encounter with this prejudice, which is Dirty Little Secret No. 2 about Autism.
Jeremy wound up for many years happily going to The H.E.L.P. Group in Sherman Oaks, one of the best programs for autistic children in the country.
He now attends One Step Ahead, a small and very well run day program in Pasadena.
Dirty Little Secret No. 3 about Autism: There aren’t enough adult day programs around. Many of the people in charge of them still act as if people with Down syndrome and the mentally disabled are the main part of the special needs community. This simply is no longer the case. The sooner the people running these programs — and the state and local politicians who supervise them — accept this and pivot accordingly, the better it’s going to be for everyone. People with autism will spend many more years in day programs than any of the schools they attended.
I’ve frequently been asked why we didn’t have more children. I always reply that having an autistic child is like having three kids, and on some days four, five or six.
Jeremy is now 28 and “talks” with a text-to-speech app on his iPad. A recent exchange reveals his skills at thinking and communicating. While watching a PBS show on aging, I asked him if I was old or young.
Jeremy typed “old” several times.
Despite getting on in years, I’d foolishly tried to regard myself as young.
Thanks for setting me straight, pal.