Tag, You’re It

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.


About Jeff Katz

Jeff Katz is the former 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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4 Responses to Tag, You’re It

  1. I can understand some of the reasoning behind the new definitions. I also understand the fear. Doctors, therapists, school officials, and other people in our everyday lives tell us how significant the change has been with Jakin. He operates on such a ‘higher functioning level’ that most people just think he is a tad rebellious if they don’t know us well. What scares us is that in our state, diagnosis is not considered official until they are at least 9 years old. So, what happens when they re-evaluate him and he loses his services. Yes, we would still continue with what we have learned from them ourselves as we are a very active part of each therapy he goes through. But, we also recognize the possibility of major regression since he has showed signs during times of vacation and even growth/hormonal changes for himself. Then what would happen… And though I agree that the tags are fairly insignificant, it does mean a lot when doctors start talk of medicating. Luckily, our pediatrician is very hungry for knowledge and more homeopathic/holistic in her approach. However, we have had the talk of what if these therapies and exercises are not enough for him to cope.
    I know I have been vocal about how much I appreciate your blog, but I must say it again. As parents we have found books and blogs and vblogs about people on the spectrum by people on the spectrum. These help, but at times it is hard for us as parents to relate. Your blog helps us relate to the joys, struggles, and options. Thanks for the updates and sharing so much of your lives with us! It truly is a blessing.

  2. Tags are important except when they aren’t. I know that sounds dopey. Absolutely they are important when it comes to getting the services needed. When it comes to medicating, that’s a whole ‘nother entry. We’ve had some real ups and downs with Nate over time in that field, although not for the last 8 years. Experimenting on him was awful. And that’s what it was (I was going to put experimenting in quotes, but it doesn’t need them), no doubt about it. We had some of our most horrible experiences of all when different pills and different dosages were being ironed out.

    Thanks for your nice words, as always. Glad you’re reading.

  3. KB Clancy says:

    Back when I was the only CSE parent rep in our town I remember sitting with many many parents who were upset at the fact that their kid was going to have a “label”. My advice to them who gives a rats ass if your kid has a label. No one needs to know except the people who can get services for your kid. No one else knows unless you choose to tell them.

  4. KB, you said it better than I did!

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