A Question of Humanity?

Image by Simon Owen Design via Flickr

Autism is often referred to in ways that dehumanize autistic people: That autism leaves a child seemingly soul-less; that the person once present in that body and mind is now missing or unreachable. That autism robs something from the person which otherwise makes them part of the human race; such as social intelligence or empathy more broadly. Or that autistic people are robots; more interested in calculations and computers than people.

To a limited extent, these sorts of statements are responding to the very real and important challenges that autism poses. Autism does indeed affect expected social interactions, “mind-reading”, eye contact, and the sorts of interests that become fixations / passions for autistic people. But the dehumanizing language used to convey these problems – talk of robots and lost souls – goes beyond observation of the challenges and expressions of concern. Rather, that sort of language deeply stigmatises and damagingly misrepresents the experiences and capacities of autistic people as a whole.

Often the most heated rhetoric comes hand-in-hand with efforts to stimulate government and public interest and concern in autism; to encourage funding into causes and cures, but also to raise awareness more generally. When parents in particular, try to make others understand how hard their lives and the lives of their children are, it is understandable that they turn to emotive metaphors. Metaphors that shock, and capture the imagination.

But with autism still being so poorly understood by the general public, such metaphors seem to have taken on a life of their own, so that autism is now more than the definition you find in professional manuals used to identify autistic people. So much so that I have read of people with Aspergers being told that their diagnosis must be mistaken because they care what other people think of them; that there is something inherent in autism that not just makes it less likely, but makes it impossible for them to experience empathy (for example).

Fighting these sorts of attitudes and opinions on autism, puts autistic people and their families in the position of having to defend their very humanity in the eyes of others. As if their starting point is “less than human” and they must prove their humanity; that is it not a given. That they are less equal and less deserving of equal respect, because they lack something vital that the rest of us never had to prove in ourselves.

Essentially, you end up with a war between those inciting fear and concern about what autism “does” to a person, and those trying to defend their humanity in the eyes of society. In such a war, both “sides” tend to over-state their claims, as they try to out-voice the other. Absolutes and universals about autistic people, get stated with little or no grounding, (or mis-stated in the case of misrepresenting an opponent’s view-point). Both sides have something to fight for and something to lose; these are not small philosophical matters of little import or practical relevance. They matter to questions of law, relationships, support services, funding, research, etc.

Besides the actual criteria required for an autism diagnosis, there is a limit to what you can claim about all autistic people (and even then, it is complicated since there are so many varieties and different groupings of symptoms for autism). You can make generalisations, and common observations; “most autistic people do behaviour X or many autistic people have a problem with Y even though it’s not required for a diagnosis.” But all too often people leave out the word “most” or “many” and jump straight to “autistic people.” And as I’ve said, the chosen wording to convey those commonalities – even when they are supposed restatements of elements in the criteria for autism (such as social communication difficulties restated as “robots”) – can have a far wider reaching impact than that intended. (Supposing here that the intention is not to isolate and demonize autistic people.)

It can be hard to connect with some autistic person – to touch them, talk to them, even be in the same room as them (for reasons such an anxiety and violence) – particularly if you have no experience with or knowledge of autism. But to take those challenges and mark them out as failures of their humanity – rather than as reasons to try to better understand the presentation of the problems – is arguably a failure of humanity itself.

These are not easy issues, with easy answers. But a way forward from this point, would seem to be more care with the colourful and emotive language used to describe the problems faced by autistic people, and more care around the use of universal statements that distort the experiences and realities of autism. Fighting to prove humanity, is just one more fight autistic people shouldn’t have to “win” in the first place.

I realise this topic can touch a lot of raw nerves. I don’t mean to insult anyone, or to downplay the challenges faced by autistic people. I am publicly sharing what I’ve observed, and trying to organise my thoughts as I wade through these debates and try to make sense of the disagreements and emotions involved. To that end I openly invite you to share your own views, and in doing so to help me better understand these issues. But please do so calmly and respectfully, thanks!