Causes, screening and why we don’t want or need an autism ‘cure’

I recently saw an article about it now being possible to identify autism at younger ages. This left me rather concerned and conflicted. In fact anything about causes of autism and identifying it at younger and younger ages fills me with a sense of stress and concern. While I think it is great to know about a child’s autism early to enable respectful supports to be put in place and understanding to happen, I also worry about the other things it may mean.

It is now possible to identify Down’s Syndrome in utero. In some countries late terminations are allowed in this instance. This is horrific and smacks of eugenics. Well actually it is eugenics.  You do not ‘fix’ discrimination by removing different people from the world. It is indicative of the prejudice around disability that this is considered OK. If there was a test for narcissism in utero would people be allowed to terminate their narcissist foetuses? Probably not although I would much prefer to have a friend or colleague with Down’s Syndrome than a narcissist. There is a prevailing attitude that disability is the worst thing that can happen, especially for parents, but parenting any child is challenging and almost 20 per cent of the population have some kind of disability. 

In terms of autism, all the talk about causes and earlier and earlier identification really scares me because I imagine a similar situation would occur if there was a pre-natal test for autism. How many parents would opt to keep their autistic child? It could mean we are wiped out within a generation.

I do not see autism in the extremist terms often used to describe it. I see that the disability element is predominantly related to autistic people living in a society which generally doesn’t understand or respect us. Certainly there are challenges to do with autism but there are usually strategies and workarounds which can address these. The key is understanding and listening. And before you ask, you can listen to people who do not use verbal speech. There is a huge range of communication devices and strategies which enable non-speaking people to communicate effectively. I have an advocate colleague who does not use verbal speech who gave an excellent TEDx talk.  Often non-speaking autistic people are called ‘low functioning’ and used as an example of why autism is a horrible thing and a terrible affliction. This is insulting to those people and not really true. And taking that view simply reinforces the issue. Taking a view of empowerment and enabling communication rather than despairing that the person will ‘never say they love me’ (or whatever) and seeing only the difficulties will simply perpetuate the issues.

Media representation around autism often feeds into these stigmatising attitudes and means people see autism as a curse and a tragedy. If a pre-natal test for autism were available I imagine this media representation would be instrumental in parents’ decisions so this is an area which needs a lot of work.

The other issue with looking for causes is that it is figuratively holding hands with another idea – that of looking for cures. Cures for autism is to my mind very dangerous territory. There are charlatans around now selling ‘cures’ for autism like ‘Miracle Mineral Solution’ (a bleach enema given to autistic children. It is as bad as it sounds and is illegal in many countries). If a ‘cause’ was discovered you can imagine that there would be even more of these quack ‘treatments’ which put autistic people at risk. And simply put, we don’t NEED a cure. We are not broken, we are different. 

Autism is a different processing system, not a dysfunctional one. If you look at the social model of disability it makes that statement a bit clearer. The social model of disability focuses on the idea that what makes disability so disabling is the environment we are in. If most people in the world were wheelchair users, a person who was not a wheelchair user would be disadvantaged. They would keep banging their head on door frames and have to crouch in buildings. They would have to bend down uncomfortably to use a kitchen bench. They would be disabled due to the environment they inhabit favouring the majority, who use wheelchairs. Autism is similar. A world populated only by autistics would probably work really well. We would understand each other’s needs and address things like sensory issues. Autism itself is generally much less disabling than being autistic in a predominantly allistic society is. We don’t need a cure at all. We need respect, understanding and being included in a significant way in decisions which affect us.

I shudder when I hear talk of autism causes and cures. I like being my autistic self. I cannot seperate the autistic bits of me from the other bits of me because autism is integral to who I am. It is literally wired in my brain. We are not broken, we are different. Autistic people do so many great things – from achievements in science and the arts to being great parents to their neurodivergent kids (and their allistic kids too!) A world without us would not be much of a world. I dread the day that a definitive cause for autism is found and I dread the day a pre-natal autism test is developed. I imagine these days will actually happen and may happen relatively soon. I hope that when those days come around that there is so much autism positive information and representation in the world that my fears aren’t realised. You ‘fix’ discrimination by building understanding and empathy for the ‘other’, not by destroying them or somehow removing what makes them different.