The UK's embrace of a celebratory stance on autism obscures autism’s harsh realities and invites de-funding, writes Jane McCready.
The author with her husband and son on a trip to historic Bath, England.
By Jane McCready
I have grown increasingly alarmed by the silencing of the severe autism voice over here in the UK.
Around half on the autism spectrum also have a learning disability (you call it an intellectual disability in the US). Very often they will also have the type of autism that requires 24/7/365 support, like my son. Yet you’d not know it from the depiction of autism in the UK media, in research, online and via our UK autism charities.
I was leafing through the magazine sent out by our national autism charity. I realised that of the 6 major articles, 5 were about autism at what you’d call Level 1 (we don’t really use those terms much here, but I am no longer allowed to say high functioning). So, the tennis ace or the autistic person now writing for TV comedies. The only story about severe autism in the whole magazine concerned a child who tragically died, due to pica. But generally you would come away with the idea that autism is really quite good news, so no wonder governments don’t feel the need to prioritise it.
The UK is the original home of the idea of the “social model of disability”, whereby my boy is not disabled (entirely) by the autism but by a society that doesn’t accommodate his autism. It’s why we don’t use medical model language like “treatment” for autism over here.
But to be honest the social model works better for physical than developmental disabilities. There is no equivalent of the ramp that will render the world safe for our children to venture out into alone.
And there’s another problem that militates against my son’s needs.
The mere fact of being diagnosed autistic does not confer spokesman rights for the whole spectrum. Yet increasingly a select few autistic folk are being cited as “the autistic voice”.
It has become de rigeur over here to have an autistic person or “ambassador” on the board or committees of our autism charities and parliamentary bodies. But what that generally means is a verbal autistic person - who can take the Tube to the meeting, who has an email address to receive the papers, who can talk and make logical points.
And, still more harmful, some of the more militant crowd will argue that parents’ voices “don’t count” as they are not actually autistic themselves.
At which point my boy’s voice is twice lost: once because he is severely autistic, and twice because I am disallowed from speaking for him, pushed off the platform.
“My boy’s voice is twice lost: once because he is severely autistic, and twice because I am disallowed from speaking for him.”
At this point, I am actually angry. I know from my own family how different the two “ends” of the spectrum really are.
My wonderful boy, 16, has severe autism and a severe learning disability – his IQ was recently reassessed at about 45. He is doing so well at his outstanding ABA school, but the severity of his disabilities (he has medical issues on top) means he will never be safe to set one foot outside the house alone and has only basic speech/understanding. ABA has helped us with many of his more challenging behaviours, but it’s an ongoing journey (and we are slap bang in the middle of the teen years!).
I am also stepmum to a beautiful, higher cognitively functioning stepdaughter, age 22: she’s a politics graduate, has a brilliant career, a partner, an independent life - they’re about to buy a house together.
Very different autisms.
A study from the University of Exeter looked at all autism research carried out in 2016. A whopping 94% of it was done with autistic folk with no learning disability. So even though they make up half the spectrum, autistic people like my son are pretty much invisible in research. And not just in the UK but the world over.
What we’ve thought of as autism research has in fact been “demi autism” research. An erasure of severe autism. And what gets researched, gets done – so the lack of research focus on severe autism has real policy, funding and societal consequences.
“Being dishonest about the very real challenges autism brings does no-one any favours except cost-cutting funders.”
It’s as if a decision has been taken somewhere that we need to celebrate the good parts of autism, and it’s somewhat rude to focus on any difficulties. There’s even a heated and fairly ludicrous debate over here about whether it’s actually a disability or disorder – though not, I’ll warrant, when it comes to collecting disability benefits.
Being dishonest about the very real challenges autism brings - at both ends of the spectrum and at all points in between - does no-one any favours except cost-cutting funders. It dishonours our children’s reality, hides their struggles.
Like most of us parents, I spend a lot of time planning for my own and my husband’s deaths.
“Not sure anyone other than severe autism/disability parents can understand that race to sort things out before we die.”
Not sure anyone other than severe autism/disability parents can understand that race to sort things out before we die. Dying with a severely autistic son feels a bit like leaving a 2 year-old standing alone in the middle of a busy motorway. Helpless and vulnerable out in the world. Plans have to be made, siblings consulted, we have to make watertight wills, have to make sure he learns as many independent skills as possible. Before we become little old people too frail to help him with the skills he hasn’t learned to manage himself. Shaving, showering, cutting his toenails, making food, taking a bus to the supermarket, talking to express his needs. The list is endless. All stuff that the late-diagnosed, level 1 autists who lecture me on Twitter, and take places on autism boards, have picked up easily and take for granted.
But from our government, forward planning for our severely autistic children is absent. To change this we mums (and dads) must speak up and fight against the feel-good mythologies that have taken over autism narratives.
I was very chuffed to have been appointed to the Leadership Council of the US-based, ground-breaking National Council for Severe Autism. Where our kids are not able to speak up, we parents won’t be silent any more.
Jane McCready lives in London, England. She is the founder of a UK parent campaign for better state access to ABA services (www.abaa4all.com). You can follow her on Twitter at @ABA4ALL_UK.