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Jeff Katz


I was reading an entry on Cafemom.com about whether hyperlexia was autism. Seems like this mom was told her twins couldn’t be hyperlexic AND autistic at the same time. This “serious” assessment was made by her new physician’s assistant and, though a PA is not a doctor, we had issues with our medical man. Our pediatrician dealing with Nate was a complete zero when it came to knowing what was wrong. He was unhelpful and destructive and, if we didn’t carry the ball, would have done Nate a serious disservice.

When we were set to mainstream Nate back into second grade, whether he was categorized as autistic or not seemed like a very casual discussion. It was really a matter of giving him a label that would allow him to get the programs and aid he needed to succeed. This meeting between Karen and I and school representatives was in the spring of 1998. Maybe funding and assigning services was less stringent then. I don’t know.

When Nate was 18, I took him to Albany to meet a doctor. Nate was applying for Social Security disability dollars and he had to “prove” he was autistic. I sat next to him as the state doctor asked questions, nothing too difficult, in order to test the truthfulness of his diagnosis. Again, it was clear he was off, and that was enough for her. Again, very casual, very informal.

Early in the life of this blog, I wrote that we’ve never cared about the whys. It didn’t matter what Nate was: autistic, hyperlexic, ADD, Tourette’s, or any of the myriad issues that he sometimes exemplifies. We had a problem and we dealt with it. But I realize that it is important for kids and parents to get the help they require. That’s why the impending new definition of autism is spooking so many.

So here’s my advice: when a diagnosis matters in relation to services, push for the diagnosis that’ll get you what you need, whether the label makes you feel bad or not. When it doesn’t have a direct relation to services, don’t sweat it. It’s not that important and, whether your child is tagged appropriately or not, it has an insignificant affect on your day-to-day life.

Courtesy of Mission of Complex


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