I spent a lot of time thinking about what to write about for my last blog post in 2017. So much has happened in PALS Society, I have learnt so much working with talented young people with autism, and talking to a host of wonderful people who work in the field of autism or learning difficulties. It was really difficult to come up with a single topic.
And then I read a post about the latest 'cure' for autism. It started out as they all do with a description of the latest wonder drug.
The series of comments on the post followed the usual lines with half the contributors hailing it and wanting to know how to get their hands on it. The other half argued equally eloquently that autism isn't an illness that needs to be cured. Nor do many adults who have autism want to be 'cured'. They are happy/comfortable with who they are. And if they see the world in a different way to the other 99% of the population, then that's not a problem.
For those of you who follow my blogs, you won't be surprised that my views fall firmly on the side of 'stop wasting your money trying to find a cure, and start spending it on improving the lives of those who have autism'. Spend it on awareness raising. On changing society to be more inclusive of those who have sensitivities which make it difficult to live in the modern world of noise, light, smell, and touch (modern fabrics etc). A world that can see a child having a meltdown in a supermarket and know what to do in that situation - as opposed to tutting and trying to gently push the child to one side with a trolley to get to the special offers.
Bit i thought that it is too easy to dismiss the other side of this perennial argument. Maybe I am missing the point and only seeing it through my own distorted lens?
So, I thought I would try to capture the opposing argument.
But I will try to do so through the perspective of the social model of disability which, when relating to autism posits that a person with autism's disability is caused by the way society is organised, rather than by a person’s impairment or difference. And 'Society' in this case begins in the womb, the maternity ward, the family, the education system, the child's peers and members of the community, advancements in technology, pollution etc etc etc.
I use this social model perspective because I simply do not believe that people with autism, per se, have an impairment.
Given how pervasive this causal society is, getting it to change to become more inclusive is not a matter of policy change (noting that we have had an Autism Act since 2009). Nor is it something that will happen quickly. And perhaps will need such incredible co-ordination that it may never happen successfully whatever the resources that we throw at it.
When I read about the latest miracle 'cure' I immediately think that it is something designed to make an autistic person become non-autistic.
I need to stop here for a moment. What does it mean to be non-autistic, when autism is a spectrum condition? One could argue that everyone is on the spectrum somewhere. If you take an assessment for autism, the results will say that you either 'meet' or 'do not meet' the criteria for an Autism Spectrum Condition. I believe that there are neural scans that can show autism, but I have never seen one, nor heard of anyone who had one.
Because it is pretty pointless.
You could imagine a brain scan to determine whether you are left handed or right handed, but there would be no point!
So if the point is not to take someone who 'meets' the criteria, and turns them into someone who 'doesn't meet' the criteria, then perhaps the point is to ameliorate some of the factors that make it difficult for a person with autism to interact with modern society.
This is what parents, carers, teachers, employers, and shop keepers do when they become autism aware. When they turn down the lights, mute the sounds, provide weighted blankets, speak clearly and unambiguously, accept without question mannerisms that are difficult to understand, and above all provide love and support. And the rewards for doing so?
You've got it.
Rather than being disabled by their environment, they are enabled. And what a change it brings about!
So, would I advocate a cure for autism? Of course I would. But I think that the drug companies have got it all wrong. They are trying to create a pill that has a market size of approximately 1% of the population.
I would create a pill that would make people behave in ways that don't disable those with autism. A market size of approximately 99% of the population!
I'm sorry, I failed in my attempt to argue from the other perspective.
I can see why well meaning scientists are working on drugs to help people with autism. To help them manage their lives better in the society that they find themselves.
I understand this, but would not advocate it.
My late father was left handed. At school they only taught him to write with this right hand, and he spent his whole life doing so. It would have been much easier if he had learned to write with his dominant hand, but the society of the day wouldn't let him.
Thankfully, nowadays no one is looking for a cure for left handedness, nor is it a disability to be left handed in our society.
I hope that one day we can say the same for autism.