Penni Winter: Time for a rethink on autism

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A laptop through Computers Against Isolation is helping autistic Rotorua boy Edward Haynes talk to family and come out of his shell. Photo / Stevem Parker, Daily Post
A laptop through Computers Against Isolation is helping autistic Rotorua boy Edward Haynes talk to family and come out of his shell. Photo / Stevem Parker, Daily Post

Today is Autistic Pride Day.

Some might ask, what is there to be proud of about being autistic? After all, they would argue, it's not like being gay or black - and surely autism is something no one in their right mind would want to have - or is it?

The stereotype of an autistic person is that of a screaming, non-verbal, 'unreachable' child, or, in the case of Aspergers, a young, male, socially inept computer geek. Autism is viewed as a 'tragedy', and the assumption is that the best thing that can happen to autistics is to make them 'normal'.

And yet few think to ask the views and opinions of those on the spectrum themselves. If they did, they would find that autistics have very different views on being autistic.

Having met a wide range of autistic people, and being on the spectrum myself, I can say that these stereotypes are just that - stereotypes. Some autistics may fit them, but the vast majority do not.

Moreover, many autistics feel that the stereotypes, and the 'autism as tragedy' mindset, are doing huge damage to autistics, both adults and children.

Because in the pursuit of that 'normality', all sorts of 'therapies', ranging from the punitive to the bizarre to the downright dangerous (for example, the latest fad of forcing autistic children to drink bleach), are being done to autistics, especially children.

These therapies are generally expensive, time-consuming, and ultimately useless. Many autistics feel that effort would be better spent on improving support and understanding of autism.

So what is autism, if not these stereotypes? At its core, autism is a profoundly different neurological pattern - a different mindset - which affects how we view, process and respond to the world around us.

Our priorities, focus, actions and reactions are profoundly different, and generally misunderstood or devalued by others.

Even the concept that autistics are usually non-verbal is incorrect, though our spoken language capacities do vary widely. And lack of speech does not equal lack of intelligence, as the now-renowned case of Carly Fleischmann, a non-verbal autistic young woman - who was thought to be 'low-functioning' until the day she started to type what she wanted to say - has proven.

Nor is she the only one of her kind, simply the most well-known. The dividing line between 'high' and 'low' functioning autistics is nowhere near as clear-cut as many think.

So if autistics aren't what people think they are, some would still ask, what is there to be proud of about being autistic? Surely it's still a 'handicap'?

And yes, there are difficult things about being autistic, I don't think any would deny that. But there is also much to celebrate and foster such as our refreshing honesty, our laser-like intensity of focus when absorbed in something, or our capacity to 'think outside the square' and try new ideas and solutions, to name but a few.

Moreover, there is a groundswell of discontent among adult autistics. We are tired of being misunderstood, mistreated, or pressured into a 'normality' that is as foreign to us as being forced to be straight would be to a gay person, or forced use of the right hand to a 'leftie'.

We are especially tired of the assumptions that our lives are worthless, that being autistic is a 'lesser' state of being, that we have nothing to contribute to society, that we cannot speak for ourselves, or that our voices aren't worth listening to. Increasingly, we reject the idea of a 'cure' for what we do not see as an 'illness'.

In 1993, autistic advocate Jim Sullivan wrote his seminal piece Don't Mourn For Us, a writing that is still, sadly, as relevant today as when it was written. It was the beginning of the autism rights movement, which is demanding acceptance of autism as a different but no less valid way of being human and no, this doesn't only apply to the 'higher-functioning' or 'Aspergers' type adults.

John Greally, who is on the spectrum and is also convener of Aspergers Syndrome New Zealand - an organisation for autistic self-advocacy - says the catchcry of the movement is, 'Nothing about us, without us!'.

"One of the key goals of the autism rights movement is ensuring that the human rights of autistics are respected. [We] want nothing less than honest transforming partnership, a proper voice for what only we can know," says Greally.

The autism rights movement is a movement for human rights for all autistics, wherever they are on the 'functioning' scale, whatever their 'official' label or lack of it, whatever their age or abilities - and its aim is the complete reframing of the conversation about autism.

Penni Winter is a writer and artist with aspergers syndrome, who blogs at Stranger in Godzone; and a member of Aspergers Syndrome NZ. She is also a member of ASK (Autistic Spectrum Kiwis) a group for adults on the spectrum, and will be speaking next month at the Altogether Autism conference in Hamilton.

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