Sunday, November 24, 2013

It's official

My son is autistic. Official diagnosis: Autism Spectrum Disorder, ASD.

I've suspected as much since he was a baby, but only left it at the thought in the back of my mind. Always there. Always nagging at me. Sure I asked the pediatrician a few times but was always told things like "it sounds like he needs a snack, when blood sugar level drops children can have difficulty dealing with things and can throw fits". But the fits he has always thrown are unlike any I've witnessed from other children. His anxiety and distress is severe and there is no off switch. No carrot to dangle, no punishment to threaten will prevent a meltdown. Once triggered, a meltdown can go for hours and will only stop when he's ready. The parroting, the tics to soothe himself, so many behaviors that are not seen in a neurotypical child have always been there. As the days, months, and years have passed, they are always there. He's going to be 8 in just over a week, and over the years I had hoped, knowing it wasn't going to happen but hoping nonetheless, that he would "outgrow" the things that make that voice scream at me that there is something wrong.
So I turned to the internet. To my friends on twitter. To anywhere I could find some information and it became apparent that AJ had all the characteristics of Aspergers. A few twitter friends with experience in ASD encouraged me to get him assessed. They helped me to realize that his behaviors were because of the ASD. First I went to my insurance website and found a child psychiatrist who specialized in ASD. That was a waste. The guy did no assessment. He dropped a file and asked AJ for it, when he picked it up as directed the Dr said "thank you", and because AJ has learned good manners and said quietly "you're welcome" the Dr surmised that AJ has ADHD and not ASD. Wait, what‽ So according to this guy, spending 30 seconds with my son is long enough to diagnose anything‽ Um, no. But I did feel defeated. As though I had nowhere else to turn. But again my friends encouraged me to not give up. So I didn't. I remembered a patient at work whose mother works in the schools with autistic kids to be sure they are getting the assistance they deserve. I talked to her and she gave me the name of the Dr who would help us. AJ was finally given a proper assessment as well as being observed at school by this Dr, who gave us the diagnosis.
The funny thing? My emotional reaction to it. If the report came back saying he wasn't on the spectrum, I know I would have said "BULLSHIT!" But to see it in writing? The diagnosis that I have always really known? It was still hard to swallow. It changes nothing in terms of how I feel about my son. And I wouldn't change him for the world. I know him. I know he is a loving, caring boy. Others may see him as unfeeling, unempathetic, and even spoiled. But I know him and couldn't love him any more.
So now I feel a bit overwhelmed. There's a lot to take in. To learn. To do. But at least now we have something to go on. The ball is rolling and now we have a chance to help him grow up and get him the help he needs to be successful in school. We have answers as to why he does the things he does. I'm more understanding when a meltdown happens and there's less yelling (from me) as it won't help and doesn't make anybody feel better.
He knows he is different. He confided in me that the kids at school think he is "weird". I haven't told him anything about ASD or that he has it. I am hoping to get guidance from a support group as to how and when to teach him about it. I'm not embarrassed about it and he shouldn't be either, so when the time is right and I know how to, I will explain it to him.


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