Monday, March 26, 2007

Labels

We think of ourselves, and others, with labels all the time. Alex is ADHD and sort of dyslexic. The professionals are quick to say that Alex has ADHD, not Alex is ADHD; I need to be careful about that little detail… Dave and I are both at best "geeks" or "nerds." I label myself a Domestic Disaster. The other day at a meeting of Joseph's therapy team, the man that has been helping us with our home program for the last 5 years announced, in passing, that he wouldn't call Joseph autistic or PDD-NOS. Clearly Joseph's problems come from a genetic anomaly—but I’ve grown comfortable with the label autistic. It is never easy to say, but it is getting less hard to say. It has surprised me over the past few days how often I’ve thought about that one brief, off-hand comment. Autism isn’t a label I’m comfortable with, but I’m not comfortable without any label either. That is where we were for the first 5 years. Genetic anomaly. No record of any other person with the same genetic anomaly. The geneticist told us “Joseph will write his own book.” I used to think something like Downs would be easier, because at least we would know what to expect. At the very least, the PDD-NOS diagnosis gave us a place to be. It also gave us access to behavior therapies and teaching techniques that have been extremely useful. We will continue to label him “autistic” because there isn’t a better category, or a better way to make it clear to others that one shouldn’t expect typical behavior from Joseph. But it has had me thinking.

4 comments:

Jerry Grasso said...

I hear what you are singing, sister!

That being said, it is good to have the tag...in a way. You mentioned Downs - well, most Downs-affected children have certain characteristics. Others have different manifestations. Obviously these clue in the general population. Autistic kids - well, they are just kind of weird, and can be very irritating very quickly if you don't know better - Charlie S. is just a kid that can't mind and won't stop making noises, etc...

Is that a rationalization? Maybe...but at the grocery store when the boy is doing 'movie talk' and wants to give everyone a hug...this helps 'qualify' him to the receiver of said hug with chapter 8, verse 2 of the second season of Yu-Gi-Oh.

It ain't right, but is what it is....

BTW - are you ready for a possibly OSU/FLA rematch?

mcewen said...

Jerry's right. I just think label=services.....helps me.
Best wishes

a mommy said...

I have the same label issues. On the one hand, I worry about the boys being pigeonholed, but on the other, it serves as a useful shorthand for similarities among children's issues, and does = services.

To me, the label problem is just more of the infinite uncertainty. We've seen our diagnosis (along with such other "fixed" issues as IQ) change substantially over time. It hardly inspires confidence, now does it? We'd like to believe in something, and they make it kind of hard.

Norma said...

I like the word "idiopathic" when it gets attached to something. It means "We don't know why, but here's what you've got. . ." and it seems to explain so much.

I didn't go to book club either. Didn't like the book. Didn't even want to hear it discussed.