This isn't just an academic debate: By rewriting autism's definition, the American Psychiatric Association will affect services for thousands.
Everyone, now, has something to say about autism. While TV shows, such as Touch, portray autistic children as possessing superhuman powers, the American Psychiatric Association (APA) is busy revising its definition of the disorder to focus on only the most affected individuals. Under their new revision of the Diagnostic and Statistical Manual of Mental Disorders (DMS), the tome that describes and codes psychiatric issues ranging from autism to substance abuse to schizophrenia, people with higher functioning autism, sometimes called PDD or Aspergers or simply high functioning autism, could lose the autistic label.
The new DSM V definition, which reads like a Dim Sum menu of dysfunction, states that an autistic person must have three deficits in social communication, show two out of four patterns of repetitive behavior, and begin to display deficits in childhood. Together, these deficits must impair everyday life. The previous definition in DSM IV had more options on its menu and would include kids whose issues were lumped in one area. The new definition also adds language that would only apply to the most severely affected individuals. It's no longer just about showing an "apparently inflexible adherence to specific, nonfunctional routines or rituals."
What's in a name? Why is the autism community up in arms about this change in the DSM? What exactly is at stake?
When my son turned two, he could not talk. He made hand gestures to ask for things, but the words that swam around in his head could not come out of his mouth. To make sense of the world, he taught himself to read. At three, when he was upset, we would write him notes, instead of talking to him. He understood written words better than anything we said to him.
Ian was clearly different than other kids. In very important ways, he was disabled. In less important ways, he was gifted. What was wrong with him?
When my son stopped developing like other kids, I took him to see specialists. Because he didn't look classically autistic, they gave him a dozen other labels for his condition -- Sensory Integration Disorder, Apraxia, Speech Delay. He didn't receive an autism diagnosis from a neurologist until he was five. The doctor sat us down in the examining room and asked, "has anyone every used the word autism with you?" We sat in stunned silence in that room for 20 minutes trying to wrap our minds around this word.
After we recovered from that blow, we slowly realized that the autism label was our savior. Ian now qualified for a school that specialized in high functioning autistic kids. There, he received targeted help from individuals with an expertise in autism. He received speech therapy four times a week, occupational therapy to help with his fine motor control, and ABA therapy to help him control his focus and limit his OCD tics. While our insurance company still tortured us about paying for certain therapies, laws were in place that gave us some protections. In the state of New Jersey, the Autism Insurance Act requires that private insurance cover diagnosis and many programs for the autistic. With his new schools and services, Ian made rapid progress.
During those three years when we wandered lost through the forest of disability labels, Ian missed out on years of services that would have better targeted his needs. I suppose that regret is an inevitable part of parenthood. For us, we'll always regret that we didn't find the right label for him until later.
According to the APA's new definition, autistic children should have "excessive adherence" to routines and have "highly restricted" interests. Those words, excessive and highly, are subjective and might exclude my son, as well as all of his classmates. Outside the school, as they wait to pick up their kids, the nervous parents whisper. If our children no longer qualify as autistic, what will happen to them? Will insurance companies pay for their speech and ABA therapy? Will the school district pull them out of their special classrooms? So many parents of autistic children have huge financial problems due to unreimbursed therapy and the loss of income. Will this new law make their financial burden worse?
Make no mistake: What may appear to be a purely academic debate over the autism label will have a real impact on thousands of families. For those of us whose lives are inextricable from the politics of autism, it is the label -- the one that was so difficult for us to accept at first -- that has been the key to getting help for our children.
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