Katie McCarron

The on line memorial for Katie McCarron is being co-ordinated by the Autism Hub. There is nothing I could say that could add a thing to this amazing tribute. Please go to

http://aspiefamily.org/dad/2006/05/19/katherine-mccarron-memorial-on-the-24th/

Autism Speaks; Ersatz Representation

"During the Chinese cultural revolution such revelations were called "speaking bitterness." And in the women's movement, it was called consciousness raising. The goal is to build awareness, understanding, and solidarity. Autism parents, and autistic people, and autistic parents each have their anguish — and triumphs — to share."

This comment was made by Mothersvox as a way of explaining the negative tone and emphasis of Autism Speaks’ Autism Everyday video.

Mothersvox has it about half right. Yes, the goal is to build solidarity. But how can this be a rational means of building understanding based as it is on an extreme of negative emphasis? Is this the kind of ‘awareness’ we want the general community to have? Who knows, our kids might want a job and a life some time in the future.

Things like Autism Everyday come to be because the main goal of 'autism' societies of every stripe, unless they happen to be run by autistics, has very little to do with swapping notes to help the kids and much more to do with sympathy and emotional support for the plight of the parents. When Sally is asking ‘What do I do about Joe jnr’s tantrums, meltdowns, violent outbursts’ (insert horrible behaviour here), she is not really seeking advice, she already knows what the options are and all she wants is the collective support of her fellow sufferers, well maybe some advice as well, but that’s not the main aim of the game.

There’s nothing wrong with that in principle. It's a social thing. It's what all social people do in situations where they can have a sense of solidarity or group identity about something. But in practice the emotional bonding and solidarity become the social imperative, overriding all other considerations, including the ostensible reason for the group’s existence. But you won’t find that anywhere in the blurb advertising the aims of the site. To a site, they will claim to represent autism. It will be taken as axiomatic that they are the advocates for their children.

And that is true up to the point where the social imperative takes precedence. That point can be seen in this video, on the ASA’s ‘Getting the Word Out’ campaign and in virtually all pronouncements emanating from Autism Canada.After that point, it must be blindingly obvious that the interests of autistics, including their children are no longer paramount.

Would you like these folks to be speaking for you?

Autism Speaks - For Whom?

Autism Every Day, a 17 minute expose of autism was very recently showcased on the Autism Speaks website. In the short time available the producers nimbly jumped from one ‘autistic moment’ (borrowing a phrase from Phil Schwartz) to the next. There are tantrums aplenty replete with ear shattering screams, sleepless nights, diaper changing of (looked to be about a 3-4 year old), escapism into traffic etc. Interspersed with the footage was commentary from the parents and the occasional sibling on the trauma of sharing house with an autistic child, threatening sanity, marriage and the family’s financial viability.

Is this the real story of autism?

Can’t be. What’s missing is the real voice of autism, the voice of the autistic child. Don’t they get a say? Can we get an idea of what they might have to say about being a hybrid affliction/burden and the impact of this on their lives? Should we do a little extrapolation here and speculate on the trauma of living in a hostile environment, which would have to be what these autistic children are living in wouldn’t you say? If people think of your existence as a threat to their autonomy, integrity, relationships and finances, they aren’t going to like you very much, now are they, no matter what they say?

Maybe we should get the APA to have a quick look at this video. They’re the ones who cite the rates of child abuse of developmentally delayed children at 7 times the rate for normal children and 2-3 times the rate for children with other disabilities. Isn’t it the case that people abuse other people including children when they feel they have the right to?

SHIT HAPPENS - well maybe not

There’s a recurring theme running through the stereotypical portrayal of autism in cyberspace. Along with ‘cut off from the world’ and ‘self-injurious’ there’s very often the dramatic ‘smearing faeces everywhere’, which conjures up very unpleasant images indeed plus a whole bundle of sympathy for the plight of the poor parent having to clean up this foul mess on a regular basis. It also leaves the marked impression that there’s no hope for the poor lost soul doing the smearing. Of course this smearing is abnormally occurring in the older autistic child since typically developing children have been known to do this sort of thing – before the age of 2.

I never had a reason to question the veracity of this assertion until Mr John Best Jr used it and that gave me pause. Mr Best is not exactly the shy and retiring type. Generally he lets you know his views quite forcefully. He runs a weblog with the title ‘hatingautism’ after all and it would be reasonable to surmise, so all consuming is his plight in raising his autistic son, that if faeces smearing really had been a major and enduring part of the autistic scenery post infancy, we would have heard about it long ago and rather often. But no, there it was - this solitary reference – very un-Best-like.

Now once the seed of doubt is planted, it niggles. How often do we hear this ‘faeces smearing’ descriptor of parenting in extremis? On reflection, but this could very easily be recall bias, it seems that the parents making the call are usually referring to OPKs – Other People’s Kids. In which case, this could very well be the very stuff of myth making. Statements are made with a dramatic flourish – seems to garner lots of sympathy. So it is repeated endlessly and urban legend here we come!

But, lets not lose sight of the fact that these kids are autistic. Autistic kids have some rather entrenched sensory sensitivities – particularly to texture. You won’t find either lima beans or scungy slimy things including bread and butter pudding in my household. The unimaginable, to me, is how an autistic kid could stand the sensory insults involved in handling faeces. Here, my imagination simply quits.

So, is this for real? Do autistic kids smear faeces as a rule? Are the perpetrator’s really autistic would be my question.

So, when you hear this descriptor, check to see if this is about their child or an OPK, whose parent might very well have heard it about another OPK and so on. We get exaggerated to on a regular basis, so I think it’s reasonable to be a little more sceptical. Of course, if this is really real we’d better know about that too.