Friday, February 27, 2009

The Great Debate

It's not news to anyone that I have been struggling with whether to further investigate Asperger's for C for some time. Years ago when we first became involved with the "Brake Shop" at CPRI to get the Tourette's diagnosis and services we also filled out an Asperger Rating Scale as part of the intake process and it indicated a high probability that he might qualitfy for the diagnosis. We had so much else that was front and centre, that took a back seat.

All the strategies we use with C would likely be useful for someone with Asperger's so most of the time I figure, why bother getting another diagnosis to add to the alphabet that already exists after his name? Then something will happen that cannot be adequately explained as TS or OCD or ADHD or learning diabilities. I admit, I have a hard time allowing someone to believe that my son is having a meltdown because of his TS - that's not what TS is. There are a lot of children who have TS who don't have full on meltdowns like my son. It's wrong to perpetuate false assumptions. At a school meeting a few months ago the Learning Support Teacher, who is new to the position but not to C (she was his Grade 1 teacher) shocked me by suggesting that rather than come up with a plan to help C manage some anxiety that we should "put it back on him - start making him take responsibility for how he chooses to act". Luckily the rest of the team was familiar with C and we were able to come up with a plan that worked for all of us. Truth is though, all those acronyms in all those reports in C's file mean very little to most people he will come across in life. I don't want him labelled to be minimized, put down, held back and I know that's is a possible side effect. But I can no longer fight the fact that Autism is becoming more known to people. More and more people know someone, love someone with an Autism Spectrum Disorder. The resources we most often use for C are ones written for individuals with Autism. All new government funding and initiatives, no matter how paltry, are for individuals with ASD and their families.

The last time I was at CPRI with C to see the Pediatrician I spoke to her briefly about what I have termed my own personal "Great Debate" - to pursue, or not to pursue - that is the question. At first she seemed inclined to dismiss the idea of Aspergers. I get it, he's not "brilliant" (I hate that misconception that those with Asperger's have to be brilliant at something). He seems so socially motivated. But as we talked and I explained all the things we work so hard at and yet he still struggles with - appropriate social responses, only wanting people to play so he can dictate what they do, his rigidity, his recent proclomations that he thinks in pictures and people need to stop saying so many words. People used to think things would be better if we could just get his behaviour under control. Now that he is so much calmer, why are so many of these things still an issue? In the end, she gave me a checklist to fill out and said we could discuss it further in April.

Even now though I wonder if he will be given the diagnosis or if the Psychologist will look at me and wonder how on earth I ever thought MY child might have an Autism Spectrum Disorder. Maybe I am just trying to fit a square peg in a round hole? Who knows?

But I do know that in that cehcklist the doctor gave us again to fill out - it was like a hundred items and I checked "observed" on all but 5 or 6 of the items.