Sunday, December 15, 2013

Functioning and Quality of Life

As a follow-up to my last post, this very interesting post goes into some more of the issues with assessing autistic people as high or low functioning:
For autism research, measures of success and function might better be tied to what is, after all, considered to be a core deficit of autism: social communication challenges and impairments. For people like my son, the answer to the question, “Is he high functioning?” isn’t the one the doctor probably has in mind. Yes, my son has good cognitive skills. But his ability to respond to cultural and social demands and expectations is what defines his functioning — and his autism. The doctor should really ask my son, “How satisfied are you with your quality of life?”
 We had a prime example of this recently.  My son is doing very well in piano class. His class was performing at an evening concert, and I was so happy that this was something he could participate in, with all the other kids.

We dressed up nicely, even getting him into a button-down shirt, and arrived at the scheduled time, only to discover that the concert was in progress and children were already at the keyboards and there was no empty spot. My son, being faceblind, couldn't tell if it was his class or a different class. He stood there desperately flapping, trying to get the attention of the teacher, but it was dark and noisy. By the time we established that it was his class, it was all over. And he wondered if he'd been deliberately left out because people thought he'd ruin the concert.  When you feel freakish a lot of the time, your mind tends to go to places like that.

It turned out that there were specific verbal instructions which my son missed, because he wears headphones in class. Or possibly because he spaced out or got distracted. Why his freakin' AIDE didn't make sure he got the info... in any event, the school let him down. And my son was left not feeling good about the fact that he can play piano well, but lousy about the fact that once again, everyone else knew something he didn't.

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