By Amy Silverman
By Olivia LaVecchia
By Monica Alonzo and Stephen Lemons
By Chris Parker
By Michael Lacey
By Weston Phippen
Until July 2005, parents had the right to refuse services, once a special-ed determination was made, and the school had the ability to force mediation or a hearing in that case, too.
In reality, schools almost never requested hearings because it was too expensive. And ultimately, the law as it was written and practiced led to lawsuits from parents who, years later, realized that their kids whoops in fact should have had services, and sued the district, saying, in effect, "You should have forced it on us at the time."
So the Bush administration and Congress changed the law. Now IDEA still requires that the students be evaluated. And if a parent refuses, the district can still take the school to mediation or a hearing. But once it's time to begin delivering services, if the parent says no, the district says "Okay," and walks away. Case closed. The parent's decision is final and the district can't take it further. Nor can the parent come back years later and sue, saying the school should have forced the services.
No one can say how many autistic kids are slipping through that crack, but judging by the population I've seen firsthand, there are some.
Apparently, the denial thing just goes on and on, into adulthood. I couldn't get more than halfway through The Curious Incident of the Dog in the Night-Time, the novel written from the perspective of an autistic teenager, but I raced through another book that came out recently. Send In the Idiots: Stories From the Other Side of Autism was written by a guy named Kamran Nazeer. Nazeer, who is Pakistani, was raised in New York City, where, when he was 5, he attended a school for autistic kids.
Nazeer is clearly on the very high-functioning end of the spectrum (I won't ruin the book by giving away his final diagnosis) and works as a policy analyst for Parliament in London, where he now lives. He got the idea to track down several of his old classmates and see what had become of them. The book plays with the nebulous definitions of autism. Without a blood test, an autism diagnosis is like a hologram. Look at it one way, and the person has trouble relating to others, shows other classic signs of the syndrome. Look at it again, and he's just an odd duck.
For me, the striking part of the book is that it shows that the struggle over whether to accept a diagnosis of autism continues on into adulthood, particularly for the high-functioning.
The book's title, Send In the Idiots, comes from a classroom anecdote: One of Nazeer's teachers had the habit of reading the newspaper headlines to the students each morning, and when she did, one member of the class, Greg, always stood up and yelled, "Send in the idiots! Send in the idiots!" over and over. Nazeer tells Greg's story, along with several others. He also tracks down Andre, a classmate who is living in Boston with his sister. Andre is doing pretty well, although he does lock Nazeer in the bathroom shortly after the following scene. Andre often communicates using puppets, and this excerpt is about the autism label.
Andre went on to study computer science. He excelled at it and was offered a research job straight out of college. I know computer scientists who do their programming from inside tubes made out of tinfoil, who obliviously wear pants with embarrassing holes in them, who devote their living rooms to experiments in super-cooling processor chips, or who can recite Ovid's Metamorphoses backward, and none of them is autistic. Though I knew that Andre was autistic, still, when I saw him sitting on a brown leather sofa with a wood frame that matched the finish of the coffee table, in a room with nice table lamps and a vase full of fresh flowers, he looked more normal than any of those computer scientists. Then I noticed that there were three more puppets on the coffee table and I noticed the content of the poster above his head. I recognized it immediately. It was a blown-up quotation from the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders.
Before age three, the patient shows delayed or abnormal functioning in 1 or more of the following areas:
Language used in social communication.
Imaginative or symbolic play.
I pointed to it. "The poster?" I said.
"Oh, my sister put that up."
"You don't mind it?"
"I don't mind it," he replied. He picked up a puppet from the table.
"Why leave people to guess whether I am autistic or not? It's hardly a game," pointed out the puppet, whose name, I later learned, was Ben-Gurion.
But of course, without a medical diagnosis, for many people it is a game.
Each time we begin a new Mothers Who Write workshop, Deborah and I ask the class members to introduce themselves and tell us about their families. Right away, Kathy Hoffman announced that she had a son with autism. And when she overheard me talking to Cheryl Fisher about the story, she volunteered to be interviewed before I could even ask.