Tuesday, 07 February 2012

• Outing the ASD to the Family

  

  It is a pleasure today to introduce a special guest poster: Amanda from Diary of a Mad Cow.
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  Last year, my eight year old was officially diagnosed with Aspergers Syndrome.

  It was, as those of you who have been through the process, an arduous and extremely emotional task. And yes, I was more than a little shocked when presented with the diagnosis.

  The shock surprised me, because I was expecting it. We’d actually been through the same process four years ago, because we suspected something was “not right”. Unfortunately, we were lumbered with an incompetent psychologist who, amongst other things, managed to screw up the assessment leaving us in a place of no official diagnosis, and the inability to redo the test as it was “too soon”.

  I’d dealt with all the feelings of guilt, the feeling like an incompetent parent, the feeling like the worst mother in the world back then. I was ok with this outcome. Albeit shocked.

  Despite how emotionally draining the process is, and the hard work my “Aspie Child” is, not to mention the husband!, none of it is as difficult as talking to the extended family.

  I have watched, over the years, the way he is spoken to by others, the tellings off he receives and the teasing by other cousins because he cries during games.

  It’s not severe, although more recently it is becoming harsher and more obvious. Maybe I’m looking for it now? Who knows?

  It’s more prevalent because he is now 8 and “should know better”.

  I watch as he is unable to answer questions because he needs time to process what has been asked of him. I watch him nod as he is given instructions; “In the cupboard, beside the oven, the third draw down, at the back, behind the paper towels …” and know that he can’t take on that many and will, inevitably, muck it up somewhere.

  I hear them say he is annoying, I see them roll their eyes and mutter things about “stupid”.

  On more than one occasion, when I’ve stepped in and said “you need to be more specific when you ask him to stop” and even “if you want him to stop, you need to stop doing it to him first” (although I believe that applies to ALL children) I am told I let him get away with too much, I’m too soft on him, I spoil him.

  I “let him get away with too much” … and I want to scream “Do you think so little of me, think that I’m such a crap parent, that I would allow him to do that?”

  Part of the issue is his Aspergers is mild. He’s an incredibly quirky, bright, fun kid who often sees the bright side of everything, who makes people laugh. He often appears “normal”, albeit a little strange at times.

  The other part of it is that I have spent so much time and effort on doing what he needs, to help him understand and fit in that, yes, he does appear to be “normal”/Asperger-Free.

  In defence of the extended family, they don’t see what I’ve put in. They don’t know what it has taken. They don’t know the stress of my every day, the work I have put in to remove this stress and to help the day just … flow.

  I find telling them – and I haven’t yet – about this diagnosis extremely difficult.

  I don’t want him labelled, or for them to pigeon-hole him, or even make excuses for him. I don’t want them to think less of him, or differently of him, or fob him off. I don’t want his quirky and fun nature – the part I see as “just him” being viewed as a disorder.

  I DO want them to understand what is going on.

  So why is it so hard?

  Because for years, by family (mostly) and some others, I am constantly told “Oh, there’s nothing wrong with him”.

  “All 3/4/5/6/7/8 year old boys are like that.” – yep, every year, when I’ve expressed concern, or tried to explain, this is what I’m told.

  “That’s normal.”

  No, it’s frigging NOT, I want to yell. The level of obsessiveness he has is not “normal”. His inability to understand rules and instructions and questions at the level is not “normal”. His extreme, literal interpretations and incapability of moving on from these interpretations is not “normal”.

  I have seen so many of my friends go through the same thing; being told they are exaggerating, or being dramatic or creating something out of nothing.

  Because when the extended family have made a decision about your child and about your parenting abilities – and they are “right” in this assumption – sometimes it’s just easier to damage control as necessary.

  Because, sometimes, you’ve put so much energy into your child that you don’t have the energy to fight these assumptions … and all you want is the comments to stop and to be offered some support.

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