My son had a speech therapy session yesterday, and we were all thinking things were going pretty well. He's been doing so well that I didn't even take time off work to go to the session (I have been to almost every other session). Then, I get a phone call at work from my wife, and something's not right. Hard to make out what she's saying on the phone, and then I recognize a few words. Autism. Asperger's Syndrome. The therapist says she saw some signs that were pointing to a possible case of Asperger's Syndrome, and that she'd like to refer us to the Children's Hospital for a full assessment and possible diagnosis.
I go a bit numb. Then, I go the rest of the way. I leave as soon as I'm able, and when I get home we've all had some time to think about it. We're alternating between being completely OK with the possibility of it - we know we can handle it, and he's such an intelligent and sociable boy that even if it is true he'll be able to function normally. Then, we start thinking about the stigma. Even if he's able to function 100% normally, he'll have a Label attached to him. If he's diagnosed, there will be Programs. Specialists. He won't be Normal. That's when it hits - there is a chance that his childhood could really suck if this label and associated stigma is applied to him. How will he cope with being Different? Should he have to?
I grew up with a mild case of epilepsy - I was just different enough to feel that I didn't fit in (medications, doctors, occasional seizures) but normal enough to do everything that my friends did. There was a bit of a stigma ("epilepsy? isn't that when there's something wrong with your brain?") but nothing anywhere close to what's associated with autism. As irrational as it is, I kept seeing Corky Thatcher (I know, he had Down's Syndrome - my own irrational fear and association).
The irony is that a diagnosis would help explain a lot - he's been a much more challenging boy than any of his friends or cousins ever have been, right from day 1. In a sense, there would be a bit of relief - it's not something we've done wrong, but a bona fide medical condition. But then I start wondering if I brought it down on him. Feelings of guilt (rational or otherwise) and fear.
Regardless, he hasn't been diagnosed - we'll be having some assessment sessions in the new year - and he seems so completely normal that I have trouble picturing this possibility as being anything other than a drastic mistake by his speech therapist. She's not a doctor, and is not an expert in autism, so she may not be on the mark.
And this is not a plea for sympathy - none is needed (and please don't offer any). I am (yet again) simply using my blog to help me structure my own thoughts.