The Gift of Autism

The 'Elle' of A Day In The Life Of Elle recently put up an excellent post about how parenting an autistic child feels. Big hats off to her because she really nailed it, at least from my perspective.

I don't think 'why me?' anymore. I think 'why NOT me?' Because - and perhaps this is waxing a bit too lyrically, but bear with me - autism is a gift.

Yep, you read that right. A gift. A great big pass-the-parcel of thorns, no less, but a gift just the same. You unwrap the first crying, tantruming, frustrating, bewildering layer and you're stuck with the next issue to deal with.

But eventually, and ever so slowly, you get closer and closer to the treat in the middle. Because it doesn't matter what the outside packaging is, or the trials you have to endure to unwrap each layer along the way. What matters most is the core.

Five years ago I spent a great deal of time crying. We'd just been diagnosed, and life looked bleak. Now, looking back, I can see the scattered remains of past, challenging 'layers' all around me, and we're nearing the heart of who Master J is. We still manage a few thorn-pricks along the way and sometimes we're forced to RE-wrap with particularly challenging behaviours on occasion, but we've made it this far and I wouldn't swap any moment, any layer, for anything. We feel the way we feel and we are the people we are today precisely because we've walked this road, not in spite of it.

For those interested, please see Jim Sinclair's "Don't Mourn For Us" essay in the sidebar to the left. When I first read this several years ago I instantly began to change my perspective on how I viewed my son's 'gift'. I used to think of it as a burden, as something that, if medical science provided a safe and foolproof way to avoid or remove the issue altogether, I'd be signing him up for immediately. But you can't remove the child from the condition. As Jim puts it:

"Autism is not an appendage. (It) isn't something a person has, or a 'shell' that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive, it colours every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person -- and if that were possible, the person you'd have left would not be the same person you started with.

Therefore when parents say 'I wish my child did not have autism', what they're really saying is 'I wish the autistic child I have did not exist and I had a different (non-autistic) child instead'. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces."

Woah, huh? Those are some pretty powerful words, but ones I've taken to heart in the years since. Life won't be easy. One would be pretty naive to assume that. But focussing on the layers ahead, the seemingly insurmountable task of raising this bundle of sparking nerve fibres, is probably going to have an enormous impact on how you relate, or even how you love, the child in front of you.

For the record, I count Master J's success as both the most challenging, and most rewarding of my time as a parent :)

Cheers,
Lizzie