Tuesday, July 7, 2009

Same kid, new label

Now that the summer is half over, we now finally have the official letter in hand that tells us what Ben's kindergarden placement will be.

I actually knew several weeks ago when I made an under-the-radar call to the most likely elementary school on the list of possibilities and asked the school secretary if she could confirm that his name was on their Kindergarden roster.

(Note: I'm beginning to collect many bureaucracy survival techniques and one of them is being really, really nice to school secretaries.)

He'll be in an inclusion program, which means that he'll be in a regular kindergarden classroom, sharing an instructional aide with one other child. The inclusion program at this particular school focuses on students who are on the mild end of the the autism spectrum. It's known in our district as the Asperger's Inclusion Program, or ASIP.

We're pretty optimistic at this point that it's going to be a good place for Ben.

What's been interesting is that when I've explained where we're going next year, I got a couple questions like, "Oh, so that's what Ben has now - Asperger's?"

Implicit in the question is that Ben has changed somehow. That he now officially has Asperger's, whereas before he was hyperlexic or "on the spectrum" or autistic. Has he changed? Has he graduated?

What's happened is that he's developed to the point where he meets the school district's very loose criteria for this program: 1) on the spectrum but with typical to above-average academic and verbal skills and 2) no severe behavior problems.

In other words, he'd be bored in a special day class, but he's not ready to be thrown into the general ed wilderness without support.

For the school district, that's Asperger's.

They don't have the resources to split hairs over Asperger's and high functioning autism or PDD-NOS or non-verbal learning disorder or sensory integration disorder.

And that's fine with me right now.

I don't know if Ben "has" Asperger's or autism or hyperlexia with or without a side order of autism. There's no antibody test or MRI or CT scan to pinpoint these things.

I'm just hopeful that the people who run the inclusion program are skilled when it comes to the specific kinds of support Ben needs to be successful in the long run. And I'm grateful that professionals in our school district will sign pieces of paper saying that we get this stuff for free.

But as ambivalent as I am of the labels, as much as I think of the categories as subjective and arbitrary and insufficient for describing a person, there's something strangely satisfying about adopting, even embracing, the Asperger's label.

After all, it's more specific than "on the spectrum" and most people actually seem to have heard of it, as opposed to hyperlexia. And it seems to almost become fashionable (have you noticed how anyone who has ever felt uncomfortable at a party claims these days to have "a bit of Asperger's?")

So, we're still a hyperlexia family. But I'm happy to also fly our new Aspie flag high and proud.

graduation.jpg

Pre-school graduate looks to the future.

5 comments:

Jordan said...

I'm so happy to hear that Ben in heading into what sounds like the right kind of kindergarten for him, whatever the label - and I can see that it would be nice to have a label that is better known and - in some circles - better understood. I'll look forward to your reports on kindergarten!

goodfountain said...

Sounds like the right fit for Ben.

Your school district impresses me! I wish we had an option like that. I live in the 2nd largest school district in my area - we're bound to have loads of kids who would fit that descriptor and for whom the inclusion class makes sense.

I'm sure Ben will do great!

Christa said...

Post script:

I read this post by Dora Raymaker today on the Autism page of Change.org (great material here, if you don't already know about it.)

It's quite relevant to the discussion about labels. Check it out:

http://autism.change.org/blog/view/labels_vs_life

Diane said...

I, too, have found that "a diagnosis" - even not exactly the right one - has been the key to getting the right services in the public schools. Doesn't make sense to me - I'm not a label lover and don't think that one that's kinda right, kinda not is better than none. Except in the public schools where calling a spade a club (only different) seems to be the name of the game.

Diane said...

And I forgot to say that I COMPLETELY agree about the school secretary thing. I had this underscored recently when I went to say goodbye to the secretary at my son's middle school and say thank you for all her help. She said, "Don't worry. You'll see me next year." She was transferring to his high school! Good thing I'd made friends with her early!