In last night's otherwise-fabulous Chris Packham television documentary about autism, a Head Teacher of a large and well funded Applied Behaviour Analysis school in the USA was interviewed. The Head Teacher told us that ABA is 'educational chemotherapy' for autistic children. Vital to ensure their survival.
I, and a very large number of my national autistic colleagues, sat in stunned silence. The therapies shown involved hour after hour of exhausting training for the children, ignoring signs of distress. I've blogged before on ABA and why I and many others are not keen on it. No, not even the 'nice' sort that bribes the children endlessly to comply with non-autistic culture and communication. But especially not the sort that regards us as cancer.
I have a particular perspective on the words of the ABA Head. I am autistic. For some years, functionally non-verbal.
In 2011 I was diagnosed with an aggressive form of cancer. I was given four sorts of chemotherapy. And radiotherapy. And surgery. And wonder-drugs. And further surgery when the radiotherapy caused further difficulties.
It worked. The chemo worked. So far....
Great.
But...the net effect of all of that was appalling. Ignoring the nausea, the hair loss, the exhaustion. at the time.. I live with a huge amount of damage caused by the treatments. Damage to nerves. Scars. PTSD type stuff around anything medical now. Damage to veins. Constant pain. We are seeing a lot of chemo patients with heart disease, with all manner of other long term conditions caused by chemo. There are days when I wonder if it was worth it. Truly. Yes, even though I love my family and friends.
The chemotherapy and other treatments were offered because otherwise, I would have died.
They were offered because we had no other choice if I wanted to stay alive.
None.
To compare autism to cancer is appalling. I want to say that first of all. I am not a cancer.
Your child is not a cancer.
To suggest that our autistic lives are so terrible that we must be treated appallingly for years 'as our only chance' is not only wrong, but damaging beyond words. Humiliating. Damaging to self-advocacy. A risk to safeguarding, teaching children to comply at all costs. Teaching them that their natural behaviour and natural ways of communicating are irrelevant. Yes, a small number seem to benefit. The ones that don't are removed, quietly, from the schools and the studies. Oh yes they are.
Yes, some behavioural specialists are kind, and considerate, and don't use ABA on the children at all. They use stuff that is a long, long way from actual ABA, but call it ABA because it gets insured, that way. I'm not talking about things-that-are-not-ABA. I'm talking about actual ABA. I hope that's clear.
And, to that Head Teacher, supervising the teams for those children screaming in distress, comparing them to a cancer - goodness me, I have no words.
Parents, there are endless respectful, lovely therapies and techniques out there. Truly there are. ABA is not the 'only cure'. In fact, it's not a cure at all. I've seen the research that shows that children who appear to 'lose their diagnosis' after ABA in fact revert back to autistic behaviours later on. Of course they do. They're autistic. They were trained to pretend. Exhausting, dispiriting.
"But all children need to learn skills". Yes. So find a respectful therapy that teaches those. Basic parenting skills around autism. Occupational therapy. Autistic trained specialists who will happily teach your child. All sorts of possibilities.
"But my child injures themselves - do you want that to continue?" Of course not. Find a respectful therapy that works out why they are doing it, and works with them to find a solution. Plenty out there.
This isn't chemotherapy. And, if it was, you certainly wouldn't want to be giving it to a child when kinder treatments are available, would you?
If you are booking your child into ABA therapies..or any other therapy... take a good long look at your motives. Ask really, really good questions about which 'behaviours' they are training out of your child. And how. Really ask. You can find a good, respectful, kind, caring therapist who believes in your child... believes in their humanity and their need to be an actual autistic child. Lets your child be a child, playing autistically and having fun autistically, without every single moment of their lives being manipulated to 'teach them' to be some other child.
Look for places that have autistic leaders. Autistic trainers. No, not 'trained autistic zoo exhibits' that stand up and tell you how fab the school is. That's something different. Actual autistic people working in positions of authority and influence, in that setting. Can't find them? Be concerned. This is the future of your child they're modelling. Why aren't they using 'out and proud' autistic people as paid managers in that school? As teachers?
Avoid anything that describes itself as 'chemotherapy' for your child. They deserve better than being compared to a cancer.
Good luck out there.
