Tuesday 16 August 2011

How broad is this spectrum, exactly?

The running has had to stop for a while. I have a virus that makes me feel off-balance, dizzy and out of kilter. It has lasted a week or so already. I forced myself through ten miles on Sunday, driven by guilt at not doing it on Saturday when I felt unwell, only to end up queasy and reeling back at my front door. (I completed the run though, and did it faster.) The doctor says my inner ear is at fault. I must be still for a while and take some pills.

This feeling is not new. Trying to get a fix on how Grace is feeling, or is liable to react, often feels like a balancing act: as though I'm tiptoeing along the beam of a ship braced for the next pitch and yaw, or clutching a spinning compass between two opposing forces.

I had thought Grace's diagnosis would bring certainty. At the end of last year when I received the phone call I found instead that it threw everything into question. The doctor on the other end of the line asked me if I could come in to discuss the test results. I said yes of course and then in a rush asked what it was, what conclusion had they reached? The doctor faltered. I rushed in again, the weight of five years' not knowing suddenly too much to bear for another few days. Sounding deeply uncomfortable the doctor then said: "Yes, it's an ASD diagnosis." There were a few more short exchanges, about which I remember nothing, and she rang off.

ASD. I had no idea what she meant. As far as I knew the tests had been to find out whether Grace had Asperger Syndrome. The affirmative in the doctor's response left me entirely at sea. So Grace did have Aspergers? Or something else? Was this a relief or a disaster? I stumbled through the rest of the afternoon with Grace and baby Betty, replaying the conversation in my head until I could get to my computer in privacy.

Eventually I got to Google and Wikipedia, which told me that ASD means autism spectrum disorder and that it is so termed to encompass the wide range of associated psychological conditions, characterised by abnormalities of social interactions and communication as well as restricted interests and repetitive behaviour.

The meeting with the doctor (chastened by her superior and embarrassed for having told me the result over the phone) and the team of assessors, psychiatrists and speech therapists, revealed that within the ASD diagnosis Grace had more specifically Asperger Syndrome, with a side order of ADHD -- Attention Deficit Hyperactivity Disorder -- for good measure.

Ten months have passed since that meeting and most of the time I'm still at sea. Afloat, yes, and paddling hard: making progress most certainly but never quite sure where the horizon is. And then there are the regular tidal waves, that turn me over and leave me disorientated -- like when people say to me they don't think there's much wrong with Grace. "She's eccentric, charming and interesting," they tell me. "Surely that's all it is?" Or they say: "Oh, my kid does that all the time!" Others declare: "It's just the age."

I don't know what to say when this happens. My first reaction is always the same, a lurch of distress in my stomach and taste of panic in my mouth. Am I wrong then? Are the doctors wrong? Have I condemned her by labelling her? Or is this where the spectrum comes in? Is everyone on this spectrum then? Are there days when Grace is closer to 'normal' on the spectrum? Just how broad is this bloody thing?

And I feel embarrassed, and I feel guilty as I try to explain that no, Grace has AS, and this is how it manifests itself. What, really, is the point of pigeonholing her if observers see nothing wrong? Do I need this more than Grace? Because, by God, if she's not autistic then she's often a brat and I, by extension, a bad mother.

To the parents who say their kids enjoy inventing stories too, should I just smile and nod in future? Or should I tell them that when Grace tells stories all the rest must stop, and for hours. Should I tell them how last weekend, as her stepbrothers played with their robots on the sitting room carpet, she knelt on all fours across their toys so that she could continue to recite into their faces the ongoing chapter when they got bored?

To the relatives who say, she's just a kid, it's normal when she argues, it's the age, should I just smile and nod? Or should I recount the number of aggressive 'No!'s I get every 24 hours, from asking her to get up, to asking her to get washed, to get dressed, to leave the house, to go home again, to switch the TV off, to eat her tea, to clean her teeth.. on and on and on?

To the friends who say, oh their son is totally obsessive too, and won't stop thinking or talking about dinosaurs, or trucks, or planets or whatever, should I just smile and nod? Or should I mention that Grace's mermaid obsession has so far lasted six years? Or that her Monster High obsession means that she draws monsters on every scrap of paper from morning til night? Or that she plays alone every day because she will only play her own Phantom Manor game and no other?

Maybe I need her to be autistic because it's the only answer I've got. The rest is dizzying, and there are no pills for it.


  1. I am so glad I have found your blog. This is such a heartfelt post. I do not have a child with ASD but as a head teacher of a primary school with experience of Hearing Impaired, SEBD children and all sorts in between, I have a tiny bit of understanding. Do let me know if there is anything I can do via my blog 'The Head's Office to promote / advetise ASD. I also have another blog which links with parents so could offer some contacts there. In the meantime - have a bouquet of hugs to be going on with!

  2. Me again. Just popping back to subscribe by email. Would it be possible to set one up? I want to make sure I don't miss any posts.

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