Tuesday, September 30, 2008

Borderline

Just over a year go, after the first mention that Scooter might be on the autism spectrum, Trillian and I struggled to wrap our minds around that idea. Our hope, right at the beginning, was that getting him the therapy that had been suggested to us would mean that he would improve enough to be (at least) just on the other side of the diagnostic criteria.

Once we had some time to settle into the idea, read a lot, watch our son thrive in occupational therapy, we began to worry that we would push him just out of a diagnosis. The fear wasn't enough to stop us from pushing forward with interventions that seemed to make a difference.

Guess what we just found out?

The evaluators told us that he is "as borderline as a kid can be." But for the time being, they don't feel he quite meets the diagnostic criteria for autism, PDD-NOS, or Asperger's, primarily in the social skills* category. The final deciding factor (and apparently it was a lively debate that took the better part of an hour) was his improvement of the past 12-18 months and the idea that if he continues on the same trajectory for another year, he will definitely not meet the criteria.

From the history and previous evaluations we provided, they agreed that they probably would have diagnosed him a year ago (PDD-NOS, I'm guessing), but that there is a small subset of children who improve beyond their diagnosis in a few years. And they didn't tell us to stop any of the therapy he currently receives, even suggested looking for a social skills speech group to help with his fluency issues.

A year ago, I would have burst into tears if given a report like this. I would have felt dismissed and unsupported. It's a little easier now because we have support through the school system. My biggest fear right now is that he might no longer qualify for an IEP under his current category before he's ready to leave those supports. (I think, though desperately need to check this with his OT, that the catch-all category--other developmental delay--he's in can only be used for a limited number of years.)

So we have to wait another year for another round of testing.

*The fact that he has friends is, apparently, enough to qualify as having social skills that move him beyond the diagnostic criteria. Despite having no real answer to the question "What is a friend?" and "problematic" eye contact.

7 comments:

cinnamon gurl said...

That's great that he's made such progress! I hope he gets to keep the supports for as he's benefiting from them.

Team Serrins Springfield said...

Wow. It sounds like he has made a ton of progress in the past year. So OT is working and what the two of you are doing is working and most importantly, what Scooter is doing is working.

Aliki2006 said...

I think all the progress he's made is definitely worth celebrating. I understand the concerns you have about supports being removed, but I think he should still qualify for them long enough to see him through any difficult patches.

Bea said...

I know, I know, I know! I'm pretty sure that when I take Bub in for reevaluation he'll lose his diagnosis. I think the speech therapy and OT would stick around for awhile, but I'm terrified that we'll lose his wonderful EA. If we could just keep her for one more year to get him through the transition to Grade One I'd feel so much better. I was supposed to call in September to make the appointment for reevaluation. Oops.

Mouse said...

We're definitely happy about the progress and know that he wouldn't be in such good shape if we hadn't pushed and gone outside the system for some help 18 months ago.

But, as Trillian was just saying to me, this doesn't mean that he isn't autistic, just that he learned enough coping mechanisms before getting an evaluation to compensate for some of the deficiencies they're testing. They even recognized that he's employing coping mechanisms--I think they were trying to "spare" us by withholding a diagnosis for at least a year.

We may be able to get the social skills group through the school's speech program, especially since we have at least one person on his team who's willing to fudge things just a bit. For speech, he was borderline (again) and the SLP wanted to keep an eye on him but not do anything yet. With this, we can probably get his OT and case manager to decide he does need more speech support after all.

But argh, we were kind of hoping we wouldn't have to continue finessing the system like this. (And Bea, we definitely think that the 1st grade transition will be a test of everything and are really hoping he can continue support at least into 2nd grade.)

Caelan Ethan said...

gahh I know the stress of worrying your kid does just well enough to disqualify themselves from services.
Fingers crossed that scooter will get all the supports he needs for as long as you think he needs them.

At Julia's playgroup monday there was a kid, nothing that I could figure out that would get him into special ed playgroup so I ask the mom and she tells me he is autistic. 'problematic' eye contact. 11 months and this kid has a diagnosis? I have to get more details since Julia's ped won't listen to my questions about autism despite the major overlap in symptoms between sotos and autism.

Mouse said...

Scooter had a rough day at school yesterday, so bad he made it to the bottom of the discipline chart. I didn't get a chance to find out the problem from the teacher, but Scooter said he was "impatient" multiple times. On at least one occasion, the issue was that he wanted to color with a specific marker and it wasn't available/appropriate to what they were doing, but he was absolutely stuck on that one color, couldn't let it go.

We've also been told that because he can learn social skills, he can't be considered autistic. Which seems like an oversimplification to me. And to Google too when I search on it.