I took part in a TV production recently; a “help-show” where people write in and each week a panel addresses a different topic. I was on a panel about autism, I was chosen because they liked my blog. I was shown in advance what the letters would be, and I’d prepared myself for what sorts of discussions and questions might specifically arise. Towards the end of the filming they threw us a curve-ball (“us” was myself and another mother of an autistic child). They wanted to end on an up-beat note, so could we tell them a funny story about what it’s like to raise an autistic child..? Um. I… no. I tried. Really, I did, but I couldn’t find any light-hearted stories, let alone funny ones. I know autism is funny for some other families, they seemed to be able to laugh, but I couldn’t. Was I defective, was I missing something..?
I’d had people tell me it gets easier, and I kept waiting for it to get easier, but all autism kept throwing me was endless exhausting challenges. I’d solve one problem and another would arrive. Life was one step forward, two steps back, and I couldn’t see that light at the end of the tunnel. Every time I tried to grasp how this could better, that light just turned out to be someone else waving a torch: It wasn’t real to me, it was false hope, and often it seemed like a cruel prank. Why were people lying to me about the prospects of my future?
Over-time I adjusted to the darkness, got used to the horror of it all. That’s not the same as seeing a light at the end of a tunnel though. And then, one day, a glimmer. So real, so full of hope, that everything I’d been through started to feel more distant, and I only wanted to look forwards. What changed..? Did I finally get the “right” attitude? Read the right book? Make the right friends? No. It was words. Beautiful, meaningful, words.
My son was largely non-verbal, so we couldn’t figure out what set him off, and he couldn’t tell us. Everything was a confusing madness where I’d stumble through each day, trying to fend off the next anxiety attack he’d have, constantly trying to pre-empt all his meltdown triggers, and try to reduce them when I could. In my desperation I’d often trap myself in a cage of everything I couldn’t do and everything I must do, just so I wouldn’t be screamed at and bitten. We’d tried to find alternative ways for him to communicate – sign language, pictures, but they were only small in-roads that became useless during the worst moments. So many therapies and therapists, but daily life was still near unbearable.
Over the past couple of months particularly, my son’s ability to put together sentences and original thoughts, has sky-rocketed. Now he can tell us what is upsetting him, and we can explain why he can’t have his way, or when he will have his way, or how he can alternatively have his way. He’s still very confusing at times, but now we can try to communicate with him about why he’s acting so oddly. His sentences are comically unusual. Comically. That’s where I started to laugh at autism. At words. His beautiful words.
I know every autistic child is so very different: I discovered this wonderful saying on a wonderful blog the other day, “If you meet one person on the Spectrum, you’ve met…one person on the Spectrum”. So utterly true. So in turn I know what drove us mad might be completely different from what drives you mad. And what gave me hope and ended up being the light at the end of the tunnel, might be completely different from what gives you hope. My tunnel light might just be like me waving my own torch at you, and I get that. But I’m just saying here, how truly and deeply and madly I love words.
My life is still hard, will probably always be hard. But everyone in the house smiles more these days, and that’s a damn good start.