I’ve won many battles for my son with autism but what am I fighting for?
First there was the battle for a diagnosis. We celebrated this victory despite it being both a mixed blessing and a minor anticlimax. Then we had an EHCP, which was also a bit of an anticlimax given how many hours went into it from so many people. Now we also have funding for the school we wished for, which would give us a real sense of achievement if only it could relocate into our county.
As a self employed parent, I approach every September with optimism. By October, I realise that my eldest son, who has high-functioning Asperger’s, is yet again not going to manage full days or a full week at mainstream school. I have booked days of client work only to cancel them. I have shouted at people I really shouldn’t have shouted at. I have cried tears that made absolutely no difference. I have written and reviewed numerous documents and I continue to read countless books and articles in the vain hope of some kind of eureka moment where everything makes sense. It never really does.
The most profound shift in my own thinking came whilst watching Chris Packham bravely share his own journey through autism and point out that even if there was some magical cure that would make him “normal”, he wouldn’t want it.
How many times have I prayed for my son to behave “normally”? How many ways have I tried to help him to fit in and do what the other kids do? How much have I focussed on his autism and what is wrong, while under appreciated him as he is, with all the things that are so right. Even the recommended books I have read to him and his brother to help them to understand autism seem to focus on the “odd” things about him – as if we are all normal and he needs to be made more aware of how he is different.
What if he is normal and it is our need to focus on difference that causes the discomfort in our relationship with autism?
I spent four years studying various elements of psychology, physiology and personality and in all that time I failed to recognise how determinedly we work to define disability as a certain level of deviance from the norm. Where we place that boundary is surely a socially driven decision. Where does eccentric behaviour sit on the curve? What about wearing socks with sandals, speaking too loudly or only eating certain foods? No account is taken of changes in what is “normal”. Would those who spend all day staring at a small screen be considered antisocial 50 years ago or strange? Would we think the desire to throw oneself off tall buildings with a parachute odd and potentially disordered? What if autism is actually more normal than “normal” in a world where we never stop moving and communicate via text, email and messaging apps and we sit in isolated “connectivity” assessing the “special needs” of our children?
Since my Chris Packham moment, I have been doing my level best to help my son to see that he is not non-normal. Although I still find myself using the autism word to describe his behaviour to others, I have been practicing seeing his diagnosis the way he sees it – as just a “thing”. When you look through this lens, he becomes far more than the sum of his diagnosed differences. He is special in so many ways and however hard he finds it at times to be accepted and fit into “our” world, those difficulties will only ever be a “thing”. One day he may define his own world and we will be the ones who seem odd.
Rachel Jackson is a parent and a management consultant:
N.B. The photo is a library shot and does not depict anyone mentioned in the article.