Non-autistic parents and autistic adults are among the groups that sometimes clash on social media. The reason for the clashes can be disagreements over language, how autism is viewed and how autistic children are discussed.
The first autistic adult I met, or at least the first person who I knew was autistic, was Alan Gardner, the presenter of the Channel 4 show The Autistic Gardener. I interviewed him as part of my day job – a journalist on a newspaper – and we got on. I asked him if I could also interview him for a book I was writing on autism. At this point, he politely but firmly said no: he didn’t want to be part of a book on the subject written by a non-autistic person.
I was surprised at first, but then as I thought about the issue, and spoke to more autistic adults, I could see why.
Non-autistic parents have been the ones writing, speaking and being listened to about autism.
One of the problems with this, as I soon realised when I started speaking to autistic adults, is that it means neurotypical parents like me haven’t had access to the best insight and most accurate information.
Take eating, for example. I had been speaking to all sorts of (non-autistic) professionals about why autistic children have trouble with eating a varied diet, and received the usual advice. And then I started speaking to autistic adults, who told me about the sensory aspect; how a lump in their mash potato would literally make them gag.
I decided to put autistic adults at the centre of my book. I interview them more than any non-autistic professional or academic (though I gained some amazing insight from those groups too). I knew it was the right thing to do if I was talking about autism, but I also knew it was the way to gain the best advice for my book.
I made sure an autistic adult read every chapter of my book, but I worked closest with Laura James, an autistic journalist who has written a number of books. I had never written a book; she is a veteran, and generously supported me throughout the process.
Laura and I have become friends and I now ask her advice on a range of things, including about my autistic son when I don’t understand how to help him, or what might be upsetting him. Laura suggests ways of dealing with the situation that are brilliant. I turned to her for help when my son took to screaming a lot when things didn't go his way: she suggested writing down that screaming hurts people’s ears and they won’t want to do nice things for you.
Obviously autistic adults are not to be expected to answer all our anxieties and queries – as I try to remind myself when I feel I'm imposing on Laura – but how wonderful would it be for the younger autistic generation if they and neurotypical parents could collaborate more?
I heard of a Facebook page in the US where non-autistic parents pose questions about their children that are answered by autistic adults. I have toyed with the idea of trying to start something similar in the UK, as I honestly feel this is the best way to create understanding quickly, but I’m frankly not brave enough.
Trying to mediate this Facebook page is not going to be for the fainthearted, for the reasons given at the beginning of this post, but if it happens and works, it will be brilliant.
I suspect that once neurodiversity takes hold as a concept, and we learn that being non-autistic is not the goal, then it will make this conversations a lot easier. I'm hoping my book plays a small part in bridging the gap.
Jessie Hewitson is a staff writer at The Times. She is a mother of two sons, one of whom is autistic.
Jessie Hewitson and Laura James appeared on our latest podcast on writing about autism. You can listen to it here