Thursday, February 19, 2009

Autism mom

I feel like it's been autism all the time here for a while.

In the past two weeks, we have had multiple meetings: annual IEP, school psychologist, regular parent-teacher. Trillian and I are working through three different autism books--plus a fourth the psychologist loaned us. There's research on the internet, videos, the monthly autism meeting, possibly a conference.

My mind is oh-so full.

The information overflow is one part coincidence, one part design. The IEP, parent-teacher conference, and monthly meeting were going to happen within a short span of time by coincidence of the calendar. A couple of the books arrived from Amazon around this same time. The IEP meeting spawned the meeting with the school psychologist, which spawned some of the reading and research frenzy.

The meeting with the school psychologist was one of the single most illuminating hours Trillian and I have spent in discussion of autism. This woman became part of Scooter's education team when we received the child development clinic's evaluation; she is the head of our district's autism team, so it seemed like a good meeting for her to attend. She was, at our request, also at his annual IEP meeting. Even without an official diagnosis, she has been very giving of her time and knowledge. Taking her at her offer, we scheduled an appointment to go over the clinic's report in a little more detail and ask her some Scooter-specific questions.

One particularly interesting interpretation has led us to a tiny, but significant, shift in our thinking. The evaluation report puts Scooter's score on the ADOS right at the cut-off for an autism spectrum disorder (as opposed to a higher score which is classified as autism). The evaluators did not, however, assign him any diagnosis, saying that he did not qualify for either a PDD-NOS or Asperger's label at the time. But, as the school psychologist explained, it only says they can't give him a specific diagnosis, not that he isn't on the spectrum. In fact, he is on the spectrum.

Even before all of this, the psychologist had remarked that his ADOS scores (no points on the communication portion, high points on the social reciprocity portion) matched what she'd expect to see with an Asperger's profile. She also confirmed for us what we had heard second-hand, that Asperger's is simply not diagnosed before age 6.

At this point, I think we're headed to one of two outcomes when we go back for re-evaluation at the end of the summer. Either we're waiting until Scooter turns 6 (and a bit) to get the Asperger's diagnosis or they'll find that the additional services he will have received by then have removed the single point needed to push him off the spectrum.

Regardless of the final outcome, we're already relying on Asperger's information to help us work with Scooter on his coping mechanisms. It all rings true--and if it works, all the better.


Bea said...

I just went to our initial meeting at the school yesterday, with the IEP to be created within a month. Bub has been doing so well this year that it's easy for me to be in a bit of denial about his diagnosis. His after-school caregiver has mentioned that his differences really aren't noticeable, that his work and behaviour are completely age-appropriate. So I was a little surprised to learn yesterday that his kindergarten teacher and EA are still struggling to help him through transitions (moving to music class is particularly challenging), and that he needs one-on-one attention to stay on task whenever crafts or worksheets are involved. Everyone is in agreement that he should move on to grade one next year, and that he will need an EA for that transition. He'll continue to get (limited) speech therapy and OT. It's all good - it seems to me that he's getting what he needs to be successful, and that he is learning, both socially and academically. But I felt a little tearful coming away from the meeting. I think I've stopped believing that a diagnosis has any real fortune-telling abilities - there's no way to know what his future will look like, even a year in advance. I hope that sending him on to grade one when he's so young will not backfire. I'm moved by the evident affection his kindergarten teacher has for him (the word "charming" is included in his official record). It's a lot to sort out, somehow, all these meetings and decisions.

Lisa b said...

I always feel better when I have a plan.

I've often wondered if Scooter would actually end up with a diagnosis or continue to defy definition.
Either way, it sounds like you have a plan and a great team to support you all.

Mouse said...

Next August/September we should finally have an official diagnosis--although at this point I wouldn't be surprised to be told they're still not sure. One thing the school psychologist said to us is that the issue of temperament is frequently down-played, even though personality definitely plays a role in all this.

As things stand now, he should be able to maintain an IEP under "other developmental delays" until the end of 4th grade, even without a diagnosis. If he ages out of that without qualifying for another category, we might be able to sneak some social stuff into his gifted IEP (for which his educational team seems to think he'll qualify at the point when they first do these).

We've been thankful that Scooter's academics are so strong. That leaves no question about moving him along grade-wise. And his teacher and the classroom assistant have figured out some phrases and such that can help him get out of a meltdown more quickly.

So on the one hand, I'm very happy with the services and his improvement and all that. But it sure doesn't keep this from being consuming and exhausting.

Paul Kemp said...

I've been in a few of those IEP meetings. As long as your school recognizes that Scooter is on the spectrum, he'll be able to get services. Our district reevaluates a child when he enters kindergarten and then again every 3 years. As long as he's eligible for services, take full advantage of them.