Saturday, June 19, 2010

A shifting scale...

It feels like we've been in autism world for a while now, long enough to see what amounts to a generation move through Early Intervention and into big kid world. Not surprisingly, there's a whole new cohort bringing up the rear.

This morning I was reading a 'new' mothers' questions about the whole issue of High vs Low Functioning Autism, and what the qualifiers really mean in a very small child. Billy's diagnosis is High Functioning Autism, and it always seemed like a namby-pamby way to reassure the adults that the future wasn't all doom and gloom.

It got me thinking about how on the journey to acceptance in the autism game, reality shifts constantly. And it's taken me this long to understand that part of it is human nature, and the other part is related to the fact that we still know sooooo little about autism that everyone's guessing.

When Billy was a baby, it was the 'is he or isn't he?' question. We could see the hyperacusis, we watched him shy away from big crowds, but at the same time we were blessed with a funny, chatty, outgoing little dancing man, so it seemed insane to consider him autistic.

In the early stages of our journey, we were reading lists of autistic behaviours as though they were pre-determined attributes, not biological reactions to different wiring/chemical imbalance (whatever you want to call the differences in an autistic make-up). So, I'd look at my boy and think, 'but he's not remote' or 'he doesn't want to be alone' thinking that those tendencies were what made an autistic person. I could see he was capable of all the things a little boy should be doing, and clearly autistic kids were not capable... ergo, he's surely not autistic.

It was like bargaining with the intellectual devil in an odd sort of way. Or the emotional devil... though maybe they're the same little fellas, just choosing different shoulders to sit on. Sorry, diverted off the path for a second there. Back to understanding and acceptance.

At a little under two, we got the first kick in the guts, also known as 'the first time a medical professional agreed with my concerns that maybe a toddler shouldn't turn and run when another toddler enters their field of vision'. I fought those medical professionals (thus setting up a long term pattern of behaviour for myself) because again, though I was the one flagging an issue, I truly didn't believe it was autism.

My nephew had been diagnosed by this time, and though I knew enough to understand that all autistic kids were different, I just didn't see a connection between the functioning of the two boys. It seemed like a different thing. I was sure Billy's issue was hearing related - not a hearing loss, but a hearing gain. Too much hearing, I reasoned was just as possible as too little.

Billy's reaction to the MMR (developing measles, ceasing language development) made me fear we were moving into more autistic territory, but it still seemed as though he was experiencing an illness - a transitory slow down as he recovered from vaccine induced measles (or rubella, they never bothered to test).

My bargaining now was about illness. It seemed like he was a bit more like what people would think of as autistic (by now completely averse to the company of children, not keen on adults other than close family, sweaty, unable to play functionally for any length of time, not developing speech) but... this was because, for the first time in his short life, he'd been sick. Properly sick.

Then we hit pre-school age. Two or so years into Early Intervention, he was talking, playing, laughing and the only real concern was his dogged determination to avoid his peers. The hyperacusis was a little more manageable, but again, it seemed logical that he would stay away from noisy, unpredictable little kids.  He was obviously different to a lot of the kids, but hey, lots of pre-schoolers are a little eccentric. In our lives, he was a joy. Happy, funny, engaged... maybe a little more rigid than your average 3-4 year old, but again, he's ours... we get him, we understand what he wants, so it didn't seem like much of an issue to us. He HATED pre-school for good reasons.

We had a diagnosis at this point (PDD-NOS), and used it very much as a way to contextualise behaviour for other people. I still thought he might defy the experts, though, because I knew that the behaviours had a logical root. I thought (because it's really the impression the professionals and books give you) that he was unusual in autism terms. He wasn't mysteriously trapped in himself, he was overwhelmed by the world.

Transverse Myelitis hit him like a ton of bricks not long before his 4th birthday. In the parallel universe of hospital life, his differences crunched hard into us all. It was like skating on crocodiles. Every slip meant some horrible assault on his being. It was a challenge to protect him from the sensory onslaught of a children's neurology ward, and then the sensory onslaught of the TM hit him... we were all leaping around like the characters in Peter Pan, trying to get higher than the crocodiles' jaws.

Even though he recovered (amazing in itself) it threw us off the acceptance track because we were well and truly back in medical condition territory. Maybe it's not autism, maybe it's some odd neurological/metabolic something or other. After all, he's not typically autistic...

I threw up the day he received his official diagnosis: Autistic Disorder - High Functioning. I'm not sure whether it was anger (he's NOT typically autistic) or the sting of humiliation (crap, I was wrong... me??) or resistance (you don't know him like we do...) that made me throw up, but it sucked (the vomit and the diagnosis). I haven't read the report since, but I guess I should.

Fast forward to now, a year and a half into primary school, and the acceptance game has a whole new set of rules.

It struck me for the first time this week, when Billy went on a rowdy, independent boy's playdate, that it's not really about my acceptance anymore... it's all in Billy's hands. It's about him having the skills to say, 'I don't like that noise' or 'please leave me alone for a while'. It's about him understanding and accepting his capacities as a human being.

The fact that he's autistic is neither here nor there to him. He is just living, responding as the stimulus hits. His behaviour is his own. It is genuine, not dysfunctional. It may be different, but to him, that barely rates a mention. He is truly (as they tried to tell us we should be at drama school in my youth) 'in the moment'.

Just like he was when he was a baby, and a pre-schooler, and recovering in the hospital.

I genuinely wish I was more like him. Acceptance shouldn't be transitory, it should be unconditional.

Hear that, little fellas on my shoulders??


Ro said...

I've been slapped in the face again with Aspie teens diagnosis since the onslaught of puberty and found I'd been able to skate around his diagnosis as we hadn't had bad issues to deal with for a while.
I'm awake, now, though! lol

DQ said...

I think this is my favourite post you have written here (so far, I hasten to add). This is just, I , oh I have no words. See what you did?! All I can say is this makes me feel kind of understood, it is what I sometimes think and feel. I over-think things too. I over feel things. Your throwing up with the diagnosis makes perfect sense to me. Even though I was prepared for Perky's diagnosis (which is Autistic Disorder) I still fell to pieces, I got him outside from that appointment, into the car, crying quietly but persistently, felt a sharp pain in my nose and suddenly it was bleeding. It stopped fairly quickly but it kind of made it worse, that I was so distressed that I kind of broke a bit, physically. I continue to struggle against the diagnosis - like you I think 'but he doesn't shy away from the world' and 'he is so cuddly and affectionate'. I could go on. But enough of my ramble, thank you, once again for a wonderful, heartfelt and articulate post. Just that - thank you.

fiona2107 said...

WOW Valerie!
If you weren't already a writer- I'd be telling you to become one!
What an awesome post - and even I can see how far little Billy has come!
Denial is a hard thing to admit but look at the progress you all have made!! Woohoo!

carriemumof2withasd said...

LOL (i don't mean to laugh at you! you just made me think of what I was like at that point in my life)

Valerie I was the same!

When our pre-school said there was "something" about my son and we should see a speech therapist I went home and said to my husband...

"I'll see this speech therapist, I'll show these teachers there's nothing wrong with MY child" (now picture this eyes popping out and my head doing that thing african american woman do when annoyed).

anyway I hear ya girlfrieeeend!

michaeldoneman said...

It's a long slog, isn't it, Val? I feel so much for what you're expressing here, the incremental coming to grips with things. It's not easy and it doesn't get easier with time, just more familiar, but in the way of hope let me remind you of a story you know well. It's about a small girl with special needs who always took a little bit longer to get where she wanted to go, but having learned resilience from her parents and friends (including her smart role-model girl writer friend) she prevailed, and continues to prevail, in her own time, at her own pace, with her own style.

Anonymous said...

hi Val ... it's Bec Riggs... beautiful, honest post my dear lady... just thought I'd share Gen Jerrobs take on Diagnosis... there was a kind of skepticism i think that such complex behaviours on such a broad spectrum were being labelled this or that... but ultimately I think she didn't care...her point was this .. if it gets you funding/ if it gets you help... just accept it... be thankful for it even.. and then get on with loving and glorying in the unique person you have been gifted with...something like that anyway ... it spoke to me... love to you and yours

sonidoinquieto said...

I needed to read this today. Thank You

sonidoinquieto said...

I needed to read this today. Thank You

sonidoinquieto said...

I needed to read this today. Thank You