What’s in a name?

Jonah’s spinning. Standing in the middle of the kitchen floor he turns circle upon circle upon circle. He hardly ever tips over or crashes into the fridge. He simply walks away when he’s had enough. Or when his attention’s caught by something more stimulating. Like a rhinoceros bookmark; when you tip it forward and back, the rhinoceros look like they’re running. Which is probably what he’d like to be doing right now.

But he’s waiting for me to finish writing so that we can make “warm chocolate pudding” together. He insists on calling it “warm chocolate pudding.” Just pudding won’t do. He lives for the whip cream (whoop cream as he calls it) on top. When I ask him why he’s spinning, he doesn’t seem to understand. I try again. What does it feel like when you’re spinning? His response: “I just want you to get on with it.”

He’s been having trouble hearing lately, and I can’t tell if it’s drainage from the cold he had last week or something else. His hearing was checked this year at school. Nothing of note. Maybe it’s neurological. We’ve never actually visited with a neurologist, and I’m starting to think, as a point of reference, it might be a good idea.

We have been incredibly fortunate to have almost all of Jonah’s therapy covered by either our medical insurance or Ohio’s state autism scholarship program. When it comes to getting Jonah help and services, being labeled autistic (Asperger’s) has been invaluable. And not just for the services. For us in our struggle to understand him. Maybe one day for Jonah naming his difference will be helpful. Maybe he might even be a little bit proud. It sounds like a funny thing to say, but count on Jonah to see a diverging path as the most interesting one to be on.

So when I read a recent article in the New York Times concerning the DSM’s new autism diagnostic guidelines, anxiety and worry began to catch hold in my gut. And they spread. According to the article’s explanation of what’s going on (I’m not going to go into depth; you can read the article yourself HERE), the committee redefining the parameters of what it means to be autistic are tightening the reins. Kids (and adults) like Jonah with a diagnosis of Asperger’s or even high functioning autism may slip through the diagnostic cracks.

Jonah has Real issues—intense sensory needs, trouble with social pragmatics, fine motor delays, gross motor delays, difficulty with transition and self care, anxiety, cognitive quirks/impediments that make learning in typical ways stressful and confusing. Where will the money come from if “they” no longer consider him autistic? Forget the insurance coverage. Cross us off the scholarship list.

And this isn’t just about Jonah’s issues (and others like him). Call me selfish, but it’s also about us. We’ve spent the last year and a half trying to get our heads around this autism diagnosis. It was a big deal. Still is. That said, we have always done our best to accommodate J’s intense and very particular needs. Lately, I’ve heard both myself and John say in exasperation, “Jonah, the world doesn’t revolve around you.” But, in a way it does. That’s the reality. Any parent could say so, to some extent. Being a parent is a paradigm shift, and the best thing that’s ever happened to me. But there are days when I need help, because Jonah needs help, and John and I can’t do it alone. We’re worn out and losing ourselves. We need the perspective of professionals. We need a break, and we don’t have the skills or the energy to give J everything he needs.

Commenting on the panic generated by the NYT article, Landon Bryce of thAutcast.com pointed out that the DSM isn’t really the issue here. It’s the money. As he put it, “the panic is legitimate but misplaced: people are already losing diagnoses and services because of economic pressure. The chairman of the [DSM] committee making the changes has admitted that this is one of the purposes for the change.” Okay, there’s not enough money to help autistic people, so let’s change the rules and get rid of some of the people. I guess you can give them credit for being upfront about it.

If you’re interested in further reading or perspectives on the matter, read Landon Bryce’s post, Panic Over DSM-5 Changes in Autism Diagnosis and his follow-up, DSM-5 Pandemonium: Updates and Worthwhile Reading. Melody Latimer uses apples as an instructive (and funny) analogy to explain the problem in DSM-V Under Attack, and Michael Forbes Wilcox points out that autism is a neurological condition, not essentially a behavioral one. So why is the DSM the authority?

So what’s in a name? Money, assuredly. But also my son’s understanding of himself as a human being. No, autism is not his identity, but it’s a fundamental—an ineradicable—part of who he is. He will (hopefully) find support and help from other people who share his disability and his spark as he grows older and comes to identify and understand his difference.

I can’t believe I’m writing this. Just a little over a year ago, John and I were wrestling with the idea of labeling our son. Now I’m concerned that he might lose that label. If you feel strongly about this issue, you can sign a petition to keep the DSM-V autism diagnostic criteria the way it is at change.org. More importantly, cultivate awareness. There’s a lot of kids and adults like Jonah out there. Take notice. Reach out. Make room.

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