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!

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7 Responses to A Question of Humanity?

  1. Sharon says:

    This is really good. Bravo.

  2. nostromo says:

    I’m sorry to say there were times when I sat watching my son, and felt that by definition he lacked some of the core characteristics of what we would use to describe a human. It felt like an ‘alien’ presence in the true sense of the word. Sometimes it still feels that way to me.

    • Hi nostromo.

      Not only do I sympathise with what you’re saying, I’ve been there personally so I understand it too. Some autistic people even refer to themselves in such terms; that they feel like they arrived on the wrong planet.

      I felt like my son “wasn’t there” though I never used those words because they would have been misleading or wrong: it wasn’t that he was missing, it’s that I couldn’t get through to him and had to fight to find a way; a way to communicate and a way to securely bring him into an overwheming and confusing world. I never thought of him as without a soul, or less of a human being, though I intimately understand why people would turn to such metaphors.

      The problem is not with the sharing of those feelings per se; indeed I think it’s incredibly important to try to voice what we see and how we feel so people can help us through and address such issues. The problem is rather that seeing autistic people in this way over simplifies the problem; the seeming disconnect / “absence” is not inherent / unchanging, so much as a product of the sensory, communication and social relation issues that stand in the way. Once such issues are acknowledged and addressed, and people come to better understand the ways in which autistic people do interact with and understand the world, a lot of those problems can be significantly reduced. Not always of course (and sadly), sometimes the autism is too severe. Again though, it’s important to not over-simplify those who are so severely affected as if they’re not human, and to not over-generalise such severe cases to all cases of autism.

      I know these issues are difficult, and emotional, and it can be hard to find the words. But when we reach for the words, I think it’s incredibly important not to choose ones that make the lives of our children harder and more isolated.

      I appreciate your comment, and I hope my rambling reply has made sense!

  3. Jim W. says:

    I quite literally JUST finished the blog at http://thinkingautismguide.blogspot.com/2011/09/with-autism-empathy-issue-is-human.html, and sort of dismissed the idea that there is a bias toward dehumanizing people on the spectrum, only to have the issue crop up here.

    NOW i’m starting to liken it to the blind eye some people turn to racism because they have not themselves experienced it, but once aware of it, start noticing it everywhere.

    I think you’re right to suggest (correct me if i misunderstood) that generalizations made out of ignorance of the problem and unwillingness to develop any deeper understanding are at the heart of it. i think most parents of children on the spectrum would vehemently deny their child’s lack of empathy. But i know prior to my experiences with my daughter, I was just as ignorant.

    • Hi Jim,

      First off, thanks for the link to Rachel’s piece. I hadn’t read hers before writing mine – I think they went up around the same time – but much of what she touches on is relevant to what I’m trying to say. It’s not the same as what I’m arguing; in some (relatively minor) ways I disagree with Rachel’s stance, though I understand her concerns and have a very real respect for herself and her projects.

      And yes, I am definitely suggesting that “generalizations made out of ignorance of the problem and unwillingness to develop any deeper understanding are at the heart of it.” I think this is a multi-layered issue; it’s about language choice, it’s about general misunderstandings and false generalisations around autism, and it’s about the consequences and motivations of “dehumanising” autistic people. I’m still working my way through the issues; peeling back the layers to make better sense of the dialogues, and I think you’re quite right that in the very heart of it is something very much of the sort you have identified.

      Thanks for your thoughtful comment.

  4. Pingback: A Question of Humanity? | Neurodiversity

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