Monday, October 10, 2011

What IS a diagnosis anyway?!?

Yeah, that's what I was forced to contemplate today. I took Rachel to a developmental pediatrician for an evaluation. We made the appointment knowing that we had a co-diagnosis of "Autism" and "ADHD". I was resigned to that truth and really just trying to figure out what the best option really is to allow her to succeed. Should we continue the Focalin? Should we change that medication? Should we do something completely different?

We went to a different facility. The doctor we saw recently has retired. And since we're talking medications, I want her to see someone more local than Kennedy Krieger Institute (all right -- KKI isn't far, but it really is quite a haul), and it has been a while since we've been up to Baltimore. So we got a referral from someone we know and trust, and took Rachel to her office at Children's Hospital. This is the first time this doctor would be observing Rachel.

Overall, the appointment went quite well. We didn't give her the Focalin this morning so that she could be observed in her "natural" state. She ran off a few times, but always returned when called (and when she reached her desired destination -- she never wanted to lose sight of me). We had to wait a while, but thanks to the iPhone, we were able to have that time pass with minimal issues. I had that long talk with the doctor while Rachel (again) played on the phone. And then her examination of Rachel took place. The last time we did these, she was COMPLETELY uncooperative. Then again, the last time we did these was just after initiating in-home ABA 2 years ago. This time, she was far more compliant. She answered all of the doctor's questions to the best of her ability. And she was reasonably cooperative for the medical exam as well. Overall, she tested like a young 4-year old in most tasks (but not auditory memory).

And the results.....ADHD, yes. Autism (specifically "Autism Disorder"), NO!!!!!

She told me that she doesn't doubt that Rachel is on the spectrum, but she does not feel that Rachel has "Classic Autism" or "Severe Autism" as we have previously been told. I asked her if this was just because she progressed beyond that as she has learned and as we have learned to address her needs, and she really doesn't doubt that. We really were just starting out at that time and had just discovered things that worked. But Rachel wanted my approval of games she was playing on the phone. Rachel gave this stranger (the doctor we were seeing) eye contact. She wanted to SHARE her experiences with us. You DON'T see this in "Classic Autism".

So, over the next few months, I need to decide if I really want to know what her real diagnosis is. Does it really matter? ADHD is clear and present. That is the condition that requires medical intervention. And we know she is on the spectrum. That's the more important part. The rest really doesn't matter.

She's still just RACHEL!!!!!! (Really Aggravating but Charming and Happy who EVERYONE Loves)

1 comment:

  1. Thanks for posting this. We are taking our son to be evaluated in November and I've been kind of sitting on pins and needles, wondering what his diagnosis will be since the county won't say more than "he's on the spectrum".