Monday 11 April 2011

Autism : Love as a One Way Street?

Recently I read an article in the latest issue of the New Zealand magazine ‘North and South, called “Autism: A Mother’s Story”, also labelled, on the cover, as “Autism: When Love is a One Way Street”, about a young autistic boy and his parents. I was determined not to let this latter put me off – it was obviously done to sensationalise and sell copies, right?

At first, it seems, well, fairly ‘well-balanced’. This is a mainstream NZ publication after all, and the words ‘monster’ and ‘stolen’ are nowhere in evidence. And it’s sympathetic… But. A more discerning read reveals underlying biases: –

1) The sympathy is for the parents, especially the mother. Nowhere is there any sympathy for the child. When the mother explains, for instance, that she thinks his language delays are due to auditory processing problems, nowhere is there any hint that this, or anything else, might be a source of frustration for the boy, or for any autistic person for that matter. It’s all about how hard things have been for the mother, how ‘heroic’ the parents are, etc etc. (I’m not saying that it isn’t difficult bringing up an autistic child, but plenty of testimony has now emerged that life is damn hard for the growing autistic too.)

2) Much is made of the autistic child’s ‘inability’ to show love and affection. (Translation: he doesn’t show it how we expect, so therefore he doesn’t feel any.) Yet despite acknowledging that the boy “is capable of affection and loves hugs and the sensation of skin on skin”, they still bang on about ‘love being a one-way street’, pointing out that he sometimes calls his mother “by the name of one of his therapists as though the distinction between mother and therapist is lost on him”. Or, could it possibly be, that he simply doesn’t understand or remember names too well? And could it be that he does love his parents, but has no understanding that this can or should be expressed, let alone how? The underlying assumption or implication seems to be that autistics don’t have feelings like ‘normal’ human beings do, that they are cold, callous, selfish and uncaring.

3) Autism is still depicted as a ‘terrible’ thing. On the first page, we are told how, when she was told her son had autism, her reaction was that, having as older parents had all the tests to reduce the chance of a disabled child, “now they had a child with one of the worst of all”. Unquote. Sigh.

4) There’s no understanding that things might develop or change as the child grows older. The assumption is that the child will always be this way. (He’s seven!) Yet even a little research would have told the journalists that we on the spectrum are late maturers (often very late), and continue to grow our capabilities well beyond the usual age at which those of NTs become ‘fixed’.

5) There’s also no real understanding that autism is a spectrum varying in its degree of severity or its range of symptoms, and certainly no mention that at least some parents don’t see it as a ‘tragedy’. Or even that some parents are on the spectrum themselves.

6) And of course there is next to no mention of autistic adults. We might as well not exist, as far as this article is concerned, except in the sidebar about a different child, whose father is related to the now deceased author Janet Frame. And there they refer to her probable HFA or Asperger’s as “mental illness”. I kid you not.

This same family were the subject of a previous article in the NZ Listener in 2007, when the boy was only three. It had much the same tone, the only thing really different was that the family were then at the beginning of a whole host of therapies, which, the mother now admits, were “useless” and “a major scam”. (Oh, and the Listener article had a sidebar on Jen Birch, not the media’s first, or last, interview with her. I have immense respect for Jen, but the way the press uses her as a ‘go-to’ person for AS, you’d think she was the only adult on the spectrum in NZ.)

So my overall impression? That it’s ‘business as usual’ in the media regarding autism, it’s still ‘Awful Autism’, autistic children are still ‘cold’ and ‘heartless’, have no real feelings (and therefore we needn’t worry about them), they’re the last sort of child any parent would want, and autistic adults are invisible. Autism is getting ‘air-time’ and ‘page-time’, yes, and that’s good in a way, but there’s still little real understanding of autism, and the perspective of the autistics themselves is still missing, still not valued, not even truly recognised as existing. And this doesn’t look like changing any time soon.

Sigh. And double sigh.

(Quotes from “Autism: A Mother’s Story”, North and South magazine, April 2011 issue.)