Autism awareness, or empathy

Last week was autism awareness week, or it’s this week; I’m not sure. There was a flim-flam of a drama on the telly which the radio did a talking about, and lots of worthy articles in the guardian. This is fine; autism exists, and it’s good to be aware of things. In fact being aware of things seems to be the most important thing. More than actually doing anything. But that’s another argument. Autism is not only a thing but it is also something that has profound impacts, especially on those at the more autistic end of the spectrum (who, despite claims to the contrary, very rarely show up on tv or in these kinds of discussions). I’ve taught some amazing children on the autistic spectrum and value the work I did with them as some of the most important I’ve done. The wisdom of creating a spectrum which includes the relatively able and non-noticeable with those who need round-the-clock care is, to me questionable, but the existence of autism is not.

Caveats aside, the more I’ve read worthy articles and heard people doing their talking about it, the more worried I’ve become about what underlies our current obsession with (the less severe end of the spectrum of) autism, (a faddish obsession which fifteen years ago was focused on dyslexia, recently was adhd, and soon will be the new made-up-name-to-describe-prickish-tantrums-syndrome-disorder).

I’m going to start my argument with the pretty unforgivable voice of my teenage self arguing against the way that the then-fashionable dyslexia was treated fifteen years ago. He asked: “Why do we define one type of stupidity as deserving of extra time in exams and special support etc., and not others?” He didn’t like it – couldn’t see the logic. I don’t like the way he expressed himself but we’ll follow through the argument before we completely condemn him.

He was told that it was because the dyslexic child’s profile of abilities was high in all other areas but low where written words were concerned. Dyslexic children can understand and reason and speak and do maths and such, but have a specific measurable deficit in this one area. This deficit is unusual – it doesn’t fit what we’d expect – so we should support them to catch up to their overall level.

Teenage Phil thought that the fact that someone had a particular ability-profile with noticeable troughs with the reading and the writing made them no more deserving of special treatment than those who had uniformly low ability, or a whole jumble of abilities which didn’t fit into a pattern at all.

He was told that lots of people had a similar pattern and so there must be some common cause of the unusual pattern. And if something has a common cause it’s not the individual child’s fault: dyslexic children were not responsible for their deficit.

Why, he wondered aloud (though not very loud; he was scared of the bigger boys) should the fact that one person’s issues were shared by another make any difference to their treatment? And didn’t this invalidate the previous argument about them having unusual profiles?

Teenage Phil was told to stop being clever. The uneven development must be caused by some thing, and so did not reflect an underlying level of cognitive ability (like ability does in normal, evenly-able people). The thing that caused unevenness was as yet unknown (take your pick of made up science), but regardless it was a thing and so not their fault.

Whereas the uniformly, evenly-unable children, he was told, were just, well, slow. And although the argument was never made, the implication to Teenage Phil was clear: people whose cognitive development was uniformly lower were more responsible for their problems – because they more accurately reflected who they were as a person – than the dyslexics who aren’t responsible for theirs, or at least not to the same extent.

Teenage Phil made his case a bit too forcefully, and although he had a point he drew the wrong conclusion. Where he thought there should be less support and understanding for dyslexic children, he should have though that there should be more support and understanding for everyone who was struggling, in whatever way. Nevertheless, that teenage voice rose up again this week when I was reading about autism awareness. In a similar vein I became teenagerly and self-righteously-indignant at the badly-thought-through arguments and vapid cliches. Fortunately, I’m a little less gauche than I was back then, and have recast my teenage self-righteousness into one that paints me in a much better light, to wit: I believe that our focus on autism, adhd, dyslexia and the like not only limits our empathy but also manifests a very murky set of norms which are fundamentally conservative and intolerant.

First, then, how does it limit empathy? Consider the classroom (it is, after all, the battle ground for autism and pretty much the only thing I know anything about). In my experience, in a class of thirty there will be at least two children with specific additional needs. These are needs which schools address because they’re clearly defined and there’s protocols to follow for them. The other 28 children see their 2 classmates being additionally supported and come to accept that little Ian or Terry are different and deserve to be understood and made allowance for. Teachers are generally ace at helping children with additional needs’ classmates to understand and make space for them. This is good. It is empathy and is essential to children growing up as tolerant good people.

But what of the other 28? What of the child whose particular behaviour/inability falls into a pattern not recognised as autistic or dyslexic or adhdish? They don’t get any special treatment, and are not empathised with. What of the child who feels isolated, or struggles to integrate into a class of children who belong to a different race? What of the child who smells, or is cripplingly shy (though not with the specific verbal markers that would lead to a spectrum diagnosis)? Because they don’t have a clear set of symptoms associated with their problems – a set which fits a predetermined pattern – these children receive no additional support. And their classmates are taught, implicitly, that these people don’t need to be empathised with: they’re, well, they’re normal. Normal, but a bit rubbish. In this way our empathy (as well as theirs) is limited to the special cases. This is bad enough, but it gets worse when you consider what this picture tells us about ourselves.

The children with recognisable patterns (syndromes, conditions or disabilities) are empathised with because they’re different. Or, to put it another way, because they’re abnormal. But not just any old abnormal; vitally, they have to be an abnormal in a way which we understand, or think we understand. They must be a normal form of abnormal. Why is this? Because it allows us to stay safe in our normality. By understanding their normal abnormality and giving it a name and a pretend (normally biological, often genetic) cause, we free the child of responsibility for those aspects of them which are not normal. Thereby we tell them: you’re not normal, but that’s ok because your abnormality isn’t your fault – it’s not really a part of you it’s just something that happened to you. You’re still normal really, like us, but it’s just some silly genes have gotten in the way of that. We thus tell them: “We accept you but only because we understand the ways in which you are different”. To understand, in this case, is to forgive – to pardon an abnormality which we would otherwise find offensive because of what it might tell us about ourselves. An undefined un-caused un-labelled abnormality is an offense to us becaus eit might change how we view ourselves as parents, friends, teachers, or society as a whole. A ’caused’ abnormality does not.

This is awful, if you think about it. We talk loads about tolerance, but, under the banner of tolerating difference, the message we’re actually sending is that people must disown their bits which are different in order that we can accept them. What’s that? Oh, Teenage Phil wants to give an example. Ok, go on: “Well I’ve heard that we can’t handle the existence of middle-class well-bough-up children being bad at reading so we invent dyslexia and instruct the newly dyslexic children that they are not responsible for this deficit. This achieved, we can now accept them back into middle-class society and claim to be tolerant”. I’m not sure I agree with him – dyslexia exists too – but he has a point in some cases.

And what of the other children?  The ones who don’t have neatly patterned behaviours or aptitudes? Well, they have the opposite problem: as there is no quasi-cause to which we can attribute their issues, they are seen as normal and so held responsible for their sins. They are normal but not good so are, for want of a better word, bad. Children who are less able across-the-board are forced to own all of their difficulties: they are ignored because they should be responsible for themselves. So too are children who are cripplingly shy or needy (that is, until such a time as we can ‘find’ a syndrome which ’causes’ their shyness or neediness with which we can forgive them).

In this way both parties are poorly treated: our empathy is reserved for those who are different (but only if we understand their difference, so the empathy is ultimately distancing and intolerant), and the normals are required to be completely responsible and un-understood. Our empathy is false because it doesn’t allow us to be changed – it tells us nothing about ourselves, because that with which we empathise is precisely that which we are not: abnormal. Genuine empathy means being vulnerable to change: it means understanding that which is different and may tell us something important about ourselves, not about the Other.

And it gets worse, because all the while we’re concerning ourselves with autism and adhd and dyslexia, who is it doing worst in schools? Who are we failing most? Is it the children who have a label? Well, partly yes, for the reasons I’ve set out above, but I’d argue we need to treat them more as normal people and expand our definition of normal, rather than seeing them as special cases (and as with all of this argument, I’m thinking about the less severe end of the spectrum here).

But the children who we are really failing, in their hundreds of thousands, are those children whose parents have little cultural and social capital, and so are worse at playing the game of school-preparation and networking and all of the bullshit that really makes a difference to life chances. There’s loads of them and we’re failing them, every day. They don’t get any empathy, though, because social exclusion and class-inequality are not things that we, as a society, have that much of a beef with. Sure, we might feel a bit bad about it, but if it’s a choice between empathising with a clean clear-cut medically-named case with medical names and a sweet white child from a good family, or a swathe of socially-deprived families whose very deprivation is causally related to our own privilege, we find it a hell of a lot easier to empathise with the former. Add to that our post-ideological distrust of any arguments made without ‘evidence’, and the medical model’s inability to consider anything beyond the biological individual, and you have a great way to empathise in such a way that keeps us safe from being implicated, from changing.

Our empathy only stretches as far as our politics do. Without wishing to sound glib, autistic children (and all of those other children to whom we have assigned labels) are easy to empathise with – their existence comforts us because it reinforces our own normality. Empathising with someone who’s been diagnosed as ‘different’ is never going to change you; you’ve decided that in advance. But being changed is the whole point of empathy. Similarly, tolerance is not about accepting that others exist who are different but separate; it’s about accepting that the way we define ourselves is open to change.

Autistic children need our empathy – especially those on the more autistic end of the spectrum who tend not to show up on tv because they’re not high-functioning enough for us to engage with unproblematically – but so does every child, including the non-specifically-struggling ones. And so, most importantly, do those people who live on the margins of society and do not have the cultural capital to access it. Empathising with them is difficult, but it’s a much better use of a week.

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