There is a rather annoying article from The New York Times today which talks about new definitions of autism that will reduce the number of children diagnosed. A sort of bell curve of autistic symptoms where high functioning autistics and those with Aspergers or PDD-NOS may not get the early intervention services they need because they aren't autistic enough. As Dr. Fred R. Volkmar says in the piece of the surge in autism diagnoses:

“We would nip it in the bud.”

Wow, that sounds like a guy who doesn't get it. We would nip it in the bud? Great choice of words doctor! This reads like he believes autism is like welfare abuse or some sort of insurance scam. I'm still not sure what people think parents of autistic children are getting from the diagnosis. If they are handing out money to parents of children on the spectrum, I'm still waiting for a check. Do they think we long for our kids to have their own personal babysitter at school in the form of an ed tech? Yeah! Isn't that every parents dream??? I think it's more likely there are budget cutting agendas in mind and not so much what's best for these kids who need some help. Color me shocked.

I was watching a little Spongebob with Curt the other day and just before the end of the episode, he asked me why Mr. Krabs had set up a hotel. As so often happens, Curtis had missed the entire point of the episode which unfolded in the the first few minutes. That Mr. Krabs set up a hotel and you had to rent a room in order to get a Krabby Patty so he could make more money. It took a long time to explain that, because in the world of autism, this plot makes no sense and doesn't even register. Curtis has seen entire movies like Shrek or Madagascar several times before finally asking us the most basic plot line questions. So many things are going over his head all the time.

Now translate this into the school setting. When the teacher is speaking to the class, Curtis likely gets lost quickly without some help. Any number of words or phrases confuse him and then you've lost him. And if he can't follow the trail, he isn't going to pick up the path. Without the support he has now, he would need to be home schooled. Curtis is only now beginning to ask enough questions and eliminating those times where he doesn't understand something as just lets it go.  He looks like a normal kid and even manages to sound like one sometimes, but right now he can't do it on his own. He's making progress towards that, mostly because he's had years of early intervention that have developed his speech and ability to interact with and befriend other children and he's had the support he needed to be successful in school. Support we fully intent to ween him off as soon as he can handle it.

“Our fear is that we are going to take a big step backward,” said Lori Shery, president of the Asperger Syndrome Education Network. “If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”

I'm inclined to agree with Ms. Shery. The article also mentions autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. together to lump them into one category, though there are pretty clear differences between my son with classic autism and someone with Aspergers.

Dr. Volkmar said that although the proposed diagnosis would be for disorders on a spectrum and implies a broader net, it focuses tightly on “classically autistic” children on the more severe end of the scale. “The major impact here is on the more cognitively able,” he said.

Sure hope my kid isn't too "cognitively able" to get the services that have allowed him to make so much progress thus far. Or any other autistic child who would greatly benefit from early intervention and similar services.

I'm willing to admit could be a flip side to the argument. There are probably some kids who have developmental delays by means of flat out parental neglect or other factors and they aren't truly autistic. Who knows. I have no idea what percentage of the autistic population this comprises but I doubt it's a lot.

People on the spectrum are typically diagnosed as such because their brains are wired differently and I would hope the specialists who are diagnosing autism know the specific behaviors. I believe for the most part they do. We have a terrific specialist who has seen Curtis every since months since his diagnosis and is always charting his progress.

The continued rise in autism and Asperger's probably has more to do with recognizing signs that have existed for years but around a lack of awareness that now exists. These kids need intense support at a young age in order to unlock their potential and my hope is that they continue to get it once this redefinition goes though.

Greg, Dad