Thursday, October 22, 2009

Closer to official

We've only been asking questions since E. was 18-months-old. To be fair, A. is the one who initiated them. Mostly I felt like I understood why he was odd in the ways he was--and most of them pointed to my family's bank of personal quirks, so I mostly didn't want to follow that trail too far, at first.

I wrote a while back about a particular student whom I recognized as likely having Asperger's. There's a moment I left out from that anecdote. As I read the article, I so got it. I completely understood where the kids they were profiling were coming from. But, I told myself then and a thousand times after, I am empathetic to a fault and overly sensitive to others' feelings. That means this isn't me.

A couple years later, A. and I were sitting in the coffeeshop near our condo. Our conversation, as was common in those days shortly after E. turned 4, turned to autism. Both of us had moved into fix-it mode, lining up OT and looking into other options for him. I had mostly gotten over the guilt I'd been feeling about the role of my genetics. And I finally spoke out loud an idea that had been brewing for a while at that point: I have Asperger's. My ability to read emotions and my sensitivity to others are both the result of years of observing and categorizing.

I think that since then, we've known that E. would end up just on one side or the other of the diagnostic line for autism spectrum disorder--our guess has long been Asperger's, a suspicion that has only grown stronger as E. gets older.

And now we're moving towards official.

E. went in for educational testing last week, the ADOS administered by the district's autism team.

The written report will take a few weeks yet, but the word has come back to us that he most definitely qualifies. He goes in for a full evaluation and possible medical diagnosis soon. We don't expect that outcome to be substantially different, perhaps just further refinement of where we are now.

This reminds me a bit of when we got our second-parent adoption. Suddenly we had official recognition, but at the same time nothing changed. Everything is exactly as we've known it to be all along.

Except that this time there's the kernel of the potential for where this will take us down the line.


Aliki2006 said...

I'm glad you're moving closer to "official"--I do think it's important, and people who argue that a diagnosis is just a label don't have any experience dealing with what it's like to live with a child who not only has a diagnosis, but needs one AND needs the interventions that will come from it.

Mouse said...

I have really embraced the distinction you make between a label and a diagnosis. It's been important for us to make this step since it moves him from the nebulous "other developmental delay" (which technically only covered his OT and speech needs) to a category that has more specifics attached. Now there's the expectation of us addressing social skills and pacing and other things that our IEP team has brought up in discussion, but that hasn't been officially warranted.

Aurelia said...

Hi Mouse,

I;m very glad that you have this diagnosis and maybe even some insight into yourself--never a bad thing. So glad to have seen you in person this week, and I hope you do well going forward.

P.S. Also can't wait to see if you get any change in diagnosis by getting more testing done in the future.

Jeff Deutsch said...

Hello Mouse,

Congratulations on your discovery - and good luck with your pregnancy! (I know I wasn't an easy baby, as my mother tells me.)

I saw your post on Penelope Trunk's blog. I may be able to get you what you're looking for. I don't see any one-to-one contact information here, but please stop by my site and drop me a line!


Jeff Deutsch