Thursday, September 11, 2008

Moving towards answers on a different front

One positive that came out of my unhappy meeting with Cid (Clueless Infertility Doctor) is that our endless go around on Asperger's served as a catalyst for me to finish up the paperwork we needed to compile for Scooter's evaluation.

The process in our state is a bit different than it was in Ontario. Instead of getting on a waitlist immediately and not having to do a lot of paperwork until we'd made it to the first stage (and then waiting to see if they'd recommend a full evaluation after the initial appointment and, I assume, more paperwork then), we had to fill out the paperwork up-front--with the payoff being that our first appointment would be the evaluation.

The clinic's cover letter said the wait could be 6 or more months. The woman Trillian spoke to on the phone said to expect at least 4 months. More waiting, but it was shorter than we'd had in Toronto.

We sent the paperwork off in mid-June. Twenty pages of their questionnaires and another 60+ of supporting papers, all the evaluations we have on file from the past 18 months.

Scooter's appointment is at the end of this month. 3 1/2 months. They wanted to get him immediately. It took this long only because every member of the evaluation team reads through a child's paperwork before they meet and discuss their suspicions.

Trillian thinks that their eagerness to get Scooter in quickly is due to the fact that he has just started school and they want to make sure he can get necessary supports in that environment as soon as possible. Both of us still expect an Asperger's diagnosis, although 5 1/2 is on the young side for that particular diagnosis. (Did you know that the average age of diagnosis for Asperger's is 11?)

I'm not sure what other support Scooter might need at school. He already goes to OT, and his IEP addresses issues like sitting on the periphery to limit distractions. His teacher seems attuned to his personality, and Scooter definitely fits in with his class on a social level. Again, the makeup of the town means that Scooter is not especially odd and most of the kids are already accustomed to being around others with quirks.

But I do think that there would be additional benefit to having a label at last, especially in an educational setting. It gives us more authority in explaining our son; there is more leverage in definitively saying "Asperger's" instead of "Asperger's-like" or "high end of the spectrum."

And if I may turn the spotlight to myself and get a little introspective, this process turns many questions back on me.

In doing all of this research and reading on autism, I've become dead-certain that I too have Asperger's. That it is a family trait, heavily on my mother's side, a bit less so on my father's, but there for at least four generations. So what does this mean?

Here I am, pushing, pushing, pushing to get this evaluation for my son, long decided that I want the label if one is suggested. But what about me?

I balk at any evaluation for myself. Part of this is an uncertainty of where to begin. There may be waitlists, but autism evaluation clinics for children, in one form or another, can be found all over the place. Grownups, not so much. I know, again from my readings, that it is possible to get a diagnosis as an adult, but it can be more difficult since it requires balancing childhood personality with adult function.

But the other reason I've resisted is the label. Do I need one? Do I want one? What would I do with a label if I had one? I know that I can function fine in the life I have. My field is a particularly nerdy one, so it's not like I stand out as being unusually odd. If I become a professor, my immediate colleagues will be just as quirky as I am (and, if previous experience predicts, less aware of it). So I'm unlikely to need the buffer of an official diagnosis at this point in my life.

But then again, I see so many autism alarmists and critics who use, as their proof of the supposed autism epidemic, the rhetorical (to them) question, "So where are all the autistic adults?" And I wonder if I have an obligation and responsibility to wave my hand and say, "Right here."

Luckily, I can sit this one out a bit longer and focus on Scooter's evaluation instead.


Merle said...

The most helpful thing about a diagnosis is that it clarifies your strengths and weaknesses in your mind. Then you can proactively compensate for things that you know you find difficult. It can also give you ideas of how to compensate that you never dreamed of before as you learn and read about your diagnosis. The best way for an adult to get diagnoised with ASD is to pay a psychologist privately to do a full diagnostic assessment. Here is Canada such an assessment costs $2000. But make sure the clinican specializes in ASD or you may end up with the wrong label. All the best.

Lisa b said...

I think that a label is a means to getting services. Would it be useful for you? Maybe.
One of my friends/former professors is face blind, dropped out of highschool, is a computer geek, and is super sensitive to light.
With a diagnosis he gets the accomodation of no fluorescent lighting in his office and classrooms.

Mouse said...

When we go to Scooter's evaluation, I may ask them if they can recommend anyone in the state who diagnoses adults with ASD. If anyone would know, they would.

Team Serrins Springfield said...

I have some questions for you about the evaluation and wondered if you'd mind e-mailing me. Thanks,

Mouse said...

I couldn't find your email address when I took a quick look. Feel free to email me: mouse nest at g mail dot com