In Glasgow recently, at a Celebration of Autistic Talents conference that we attended, a young boy asked the following question of the speaker, who was an author and mum of two autistic children.
‘Is autism a disability?’
The lady speaker had misjudged the tone of the event, I rather thought. Her speech about life with her two children erred on the side of negative; she described her son as ‘a complete nightmare’ ‘worse than Rainman’ and went on to say that she wouldn’t wish an autistic child on her worst enemy.
How this speaker could have got it so wrong, I am not sure. Having three children on the spectrum myself, I have a good understanding of the extreme challenges that parenting a child with autism can present, and these can never be underestimated or pretended otherwise. A fundamental resolution that I made very early on in my journey as an autism mum, though, was to NEVER speak disparagingly about the children, or about autism in general, in front of them. What message does this give? That something so intrinsically entwined in their personality (the autism) is bad, distasteful, a source of misery and stress.
I found out later from his teacher that the young boy who had asked the million dollar question had autism himself, and had, up until that point,never considered himself to be disabled. He was a charming, very academically able young man. He wasn’t being sassy, he was genuinely surprised to have this label of ‘disabled’ cast over him like a dingy blanket, especially here, at an event where many kids with autism were attending, and had been primed by their teachers to receive praise for their achievements.
She hadn’t really thought it through. In all probability, she was at the event purely to promote her new book. I can’t really say that her speech filled me with any burning desire to rush out and buy a copy.
But to get back to the young man’s question, ‘IS autism a disability?’
The events of that day caused me to think long and hard about the issue. The wishy-wishy conclusion that I eventually arrived at was ‘Not necessarily, sometimes, kind of, in a way.’
Anyone with a foot in the world of autism will have met people who they would definitely consider disabled, and most people will have met an autist who is quite autonomously getting on with life, enjoying a successes in personal interests, career and relationships. I guess my youngest and eldest children would illustrate this difference quite well. The more I thought about the disability question, though, the more I realised that every one of us needs support. Without practical, medical and social support we would not last very long. I see a world populated only by Ray Mears, Bear Grylls and that warrior woman from The Walking Dead. I would estimate that having to somehow procure my own food and water from a totally natural environment I might last for about a week, or maybe a bit longer in Autumn (blackberries) I was just going to say that my husband, a keen fisherman, would fare a little better, but then I remembered that, as an insulin dependent diabetic, his time on this planet would probably amount to about three days. Even Bear Grylls might struggle to extract natural insulin from wild boars without sterile medical equipment.
So, every one of us needs support from all kinds of other people, if we are even to survive, not to mention enjoy the luxury of comfort and happiness. That this is true of our autistic brothers and sisters should be no surprise.
Our society is a delicate, supportive web. We are not lone creatures, we need the support of our communities to function in any way.
We must get used to the fact that, although the type of support that we give to people with autism may differ from the help that the average person requires, in an ethical, credible society this difference should not create a problem. It should never be a case of those in power administering patronising charity. My husband doesn’t plead or show excessive gratitude when he picks up his diabetic goody bag each month from the chemist, and, when putting forward his list of what he needs to be able to function, neither should the person with autism feel that he has asked for anything above and beyond that which he is entitled to.
When we are able to think clearly about the type of benefits that we receive through being part of a rich, compassionate and fair society, it is much easier for us to challenge ourselves, and make some resolutions about what kind of gifts we must weave back into this web of support that keeps us safe, happy and well,