Diagnosis of ASD – what’s next?

 

Yep. There it is in black and white. Feels kind of weird to be honest. I mean, I knew this was a possible – even probable – destination for the journey we’ve been on over the last 16 months.

And yet.

I’ve heard so much about how difficult it is to get a diagnosis of ASD. Of appeals and arguments. Of whether high functioning autism should even be a thing because if they’re clever enough to know they’ve got it, surely they’re clever enough to learn to cope with it. Of parents who are convinced there is something not right, of professionals who are convinced this is a genre of pushy parenting.

I suppose in my head I’d hoped I’d be written off as one of the over anxious ones. I mean the world and his wife knows I’m capable of inordinate amounts of irrational worry over ridiculous things; that I occasionally teeter on the brink of not being able to hold things together – this isn’t news, right? So the SCAT panel coming back with a non-diagnosis means I might feel slightly foolish, but as that’s how I spend most of my waking hours, no biggie there.

I’d also had moments of thinking the opposite; that if he was diagnosed with ASD that it would be a relief, because it would finally give us something to work with; that it might be helpful to him to start secondary school with a diagnosis on record; that being able to talk to him about there being a reason behind all the *stuff* might make the *stuff* easier for him to handle.

When the phone call came, the day after he left Primary school, I was totally knocked sideways. I didn’t feel relief at all. And when the letter arrived, which set out in black and white how he met each of the five criteria for a diagnosis of ASD, I still didn’t feel relief. More a mixture of guilt and fury. Guilt because had he had this diagnosis years ago, he would have had the support he needs sooner, and that lies at my door. Fury because although his teachers individually have been supportive (especially his Year 6 teacher who really has gone over and above in his efforts to support him and work with us) the school as a body did not engage with me or listen to my concerns about him until he hit major crisis point and a CAHMS referral in year 5. And then guilt again, because at the end of the day, I should not have allowed myself to be fobbed off for so long when I knew something was not right, even if I could not articulate exactly what that something was.

Fury and guilt are exhausting, but not as exhausting as the worry about how 11 will react to this, and how I can present it to him as something positive about himself that he can embrace. In fact that’s what this post was going to be about; I’ve discovered so many positive things about ASD over the last 16 months, and I’ve had many of my misconceptions shattered; I was all set to write a constructive and upbeat post about what next for 11 and how it’s all good, man….guess I’d forgotten how fingers and a keyboard sometimes drag stuff into the open that you didn’t even know was there.

I will write that post. Soon.

 

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