Not a day goes by without my heart breaking again as I see two communities at war with each other, two communities tearing each other down instead of building each other up, two communities that could offer each other so much yet seem so often to miss the opportunity to do so. Who are these two communities? Autism parents (neuro-typical parents of Autistic children) and Autistic adults (often referred to using the hashtag #actuallyautistic, some of whom are parents too).
It grieves me that this happens and it is a cause of great personal regret that at times I may have been a part of this conflict. Autism parents feeling that they are the people that know their child the most, that they know what is best for them, and that they have every right to speak about or write on their child’s behalf. Actually Autistic adults feeling that Autistic children are misunderstood and sometimes mistreated by their parents, and that non-Autistic people have absolutely no right to talk about Autism. Autism parents who feel that it is completely their right to grieve for the loss of the lives they had hoped for their children, and to share about the struggles and challenges that they experience in the hope that it will help them and others. Actually Autistic adults feeling that this grief is insulting to them and that parents are just attention seeking and over-sharing. The list goes on…
Every day I see it. Every day I read the social media comments, blog posts, articles. Every day my heart breaks. Being a teenager in the 80’s I grew up to the soundtrack of the band ‘Frankie Goes To Hollywood’, and lyrics from two songs fill my head whenever I see the conflict between these two communities…
“When two tribes go to war
One is all that you can score
(Score no more, score no more)”
From ‘Two Tribes’
When these two communities are tearing chunks out of each other, there can never really be a winner. Someone might feel that they have got their point across forcefully, have scored a direct hit and have scored a point for their ‘tribe’ but really, how has it helped? How has it changed anything? How has it improved the lives of Autistic children, which is surely something we should all agree on?
“I said, war, good god, now, what is it good for?
Say it again, war, what is it good for?
Absolutely, nothing, listen to me
War, it ain’t nothing but a heart breaker…”
So, if this war is good for absolutely nothing, what can we do? How can we end it? How can we turn all of this negative energy that is poured into conflict into something more positive? How can hostilities end and a better way be found? Well surely it has to start with a willingness to change, a desire to seek a better future. Change can be hard, and for many their mistrust and anger towards the other ‘tribe’ has formed part of their identity. It has become a badge of honour within their community. So it isn’t going to be easy to change… but what could it be like if we all did?
What could it be like if in every community there were more Autistic adults who were willing to get alongside families with Autistic children, especially in the early stages when parents have little idea about Autism, and help them to gain understanding through telling their stories of what life was like for them as children, what they wished their parents had known then, and providing ideas for how to support children better?
What could it be like if parents of Autistic children were able to help Autistic adults understand how they are feeling, the hard stuff that they carry (while recognising that some Autistic adults are parents themselves and so get this) and that this might help Autistic adults understand their own childhood and parents better.
What could it be like if instead of judgement and anger, there was acceptance, understanding and love? A world where both communities could share freely and in a spirit of mutual grace and a desire to learn and grow together. A world where there was no more point scoring, or settling of scores.
“Oh no, there’s got to be a better way
Say it again, there’s got to be a better way”
I’m up for taking a first step towards peace, to explore ways of bringing these two communities together, to highlight where these communities already overlap. To be a part of a positive discussion that, at its beating heart, has the well-being and thriving of Autistic children.
If you’ve read this far, you’ve now got a choice; there are possibly three responses you can give. You can ignore this and move on… nothing changes, the war continues. You can hit social media hard with a vitriolic outburst about this blog and how you fundamentally disagree with it… it might earn you some points in your tribe… nothing changes, the war continues. Or you can stop for a moment and think that maybe there is something in this that is worth exploring some more… you may disagree with some of what I’ve said, that’s OK, I know I’m far from perfect, let’s learn together, but maybe, just maybe, it’s worth taking a step yourself towards the ‘better way’ that could be our reality if we want it enough.
Are you with me?
Image rights: Header: Nevada National Security Site/Wikipedia (public domain)