Who’s Autistic?

Sorry to have been gone all week. I’ve been working on other writing projects.

During the last week, I read with great interest the stories regarding the American Psychiatric Association’s impending changes in the definition of autism. Anyone who has been looking at it with an unbiased eye could only conclude that the explosion in autism, leading to the present 1 out of 100 children proliferation, only came with the expansion of the spectrum in 1993. For all the vaccine-centric, diet-centric arguments, there was one thing that changed the game: a new definition.

It’s been interesting to observe the growth of cultural awareness since then. 1993 was when we realized something serious was up with Nate, so our experience coincided with the widening in diagnosis and publicity. Since then, we see that it’s very easy to catch almost everyone in the autism net. The Asperger’s kids, some of who we know well, remind us of similar types from when we were in school: brilliant, overly social, prone to saying the absolute wrong things at the wrong times. And, as Asperger’s sufferers became conversationally interesting subjects for the media, it became easy, too easy, to look at older friends and relatives and say, “You know, I bet he’s got Asperger’s.”

Nate is different from those kids and certainly different from non-verbal kids. He would have been diagnosed with something. At the heart of the proposed revisions is how they will affect the most important thign for all parents traveling in this giant autism boat. What will happen to the services we all depend on? Perhaps many of the Asperger’s kids will be able to get by, though less well.

I know Nate would have found it impossible to succeed had he not been diagnosed autistic. I vividly recall the school meeting we had when he was around 6 or 7, when we were asked if it was OK to label him autistic for their files. We didn’t care, though we heard that some parents did. They didn’t want their children labelled as such. It was a blow to their family image.

We didn’t care about that stuff. There was only one question: Will Nate get everything he needs if he is put down on the form as autistic? Once we got the answer that, yes, his autism opens new doors to help, there was no other choice we could reasonably take. We didn’t care about the term, we cared about Nate improvement.

So, I have great concerns for all the kids who may be lopped off the autism wagon and lose their services. There’s much potential in these children; we all know that. To deprive them, their families, and society, of their unique abilities would be shameful. I do understand the position of parents with much more troubled kids who feel that the higher functioning autistics get the most benefits, both dollar- and coverage-wise.

It’s undeniable that the widening of the criteria back in the early ’90’s did one thing that is irreversible. It created a world where autism is no longer an unknown, where public tolerance for “offbeat” kids is at an all-time high and growing, and, now that kids like Nate are turning into adults like Nate, the world is a bit more ready to include them than they would have been otherwise.

There’s no going back from that, regardless of what the revisions turn out to be.

**********************************

There may be some exciting news about Nate in the coming weeks. Fingers crossed. I’ll fill you in if something develops.

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About Jeff Katz

Jeff Katz is Mayor of Cooperstown, the “Birthplace of Baseball” and home to the National Baseball Hall of Fame and Museum. His latest book, Split Season:1981 - Fernandomania, the Bronx Zoo, and the Strike that Saved Baseball, (Thomas Dunne Books, 2015), received national attention, with coverage appearing in The New York Times, Chicago Tribune, Sporting News and NPR’s Only a Game, among others. Katz appeared on ESPN’s Olbermann and The Sporting Life with Jeremy Schaap and MLB Network’s MLB Now, with Brian Kenny. Split Season: 1981 was a finalist for the 2016 Casey Award for Best Baseball Book of the Year.
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3 Responses to Who’s Autistic?

  1. SG says:

    May I ask how old is Nate now? What are the services that you think helped him the most? I am in a similar boat as you, I dont think my kid is the brilliant prodigy , the image that usually comes with aspergers but at the same time he is quite verbal too. What services do you think would help the kids the most?

    • Nate is 21 & 1/2. He’s no prodigy either, but does have some strong skills in computing and a remarkable memory that has served him well. The services he’s used since he turned 18 have all helped him get through college. He has a one on one aide which New York State pays for. That aide drives him to and from school and keeps him on task. At school, he has notetakers available for him, as well as a testing center where he can take exams outside of class. Other than that, he doesn’t have much.

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