August 6, 2007


'It is not a disease, it is a way of life': Today, an event run by and for autistic people kicks off in Somerset, the latest act of a burgeoning autism rights movement. Emine Saner reports on the campaign to celebrate difference, rather than cure it (Emine Saner, August 7, 2007, Guardian)

While I wait for Gareth Nelson to arrive, I worry that he will not like it here. I am in a cafe in a town in north Wales. He suggested it, because he lives nearby, but it is very noisy - babies are screaming and chairs scrape across the floor - and the artificial lighting is quite bright. Nelson has Asperger's syndrome (AS), a disorder (though he would not like me calling it that) on the autism spectrum, and I fear he might get sensory overload in a place like this.

"I don't mind it too much," he says, when he arrives. Sudden movements, apparently, affect him more. I knew it was him. He is dressed all in black and looks young (he is 19) and nervy. When I smile at him, he does not smile back although he seems slightly more friendly when we sit down. His lack of social skills is one negative trait of his AS, which was diagnosed when he was 14, he says, but it does not bother him greatly (like a lot of Aspies, the term many with AS give themselves, he prefers to socialise online). The only other negative characteristic he can think of is his bad organisational skills. "I've never considered the other traits, like being introverted, as a negative," he says.

Nelson, with his wife Amy, who also has AS, is leading the UK's autism rights movement. They run their group, Aspies for Freedom (AFF), from their home; it started as a website three years ago and now has 20,000 members, most of them autistic. AFF came about partly to campaign against the search for a cure. It holds protests - its members turning up with banners - at fundraising events for autism charities.

"I don't think you should cure something that isn't purely negative," says Nelson. "It's the same as black people, who seem to be more at risk of sickle cell disease than white people but you're not going to attempt to cure 'blackness' to cure sickle cell."

That is, of course, just an idiotic comparison. The notion that you shouldn't try and cure sickle cell because it afflicts blacks would sound better coming from David Duke.

But the truth is that autism/Aspergers is so overdiagnosed nowadays that it does include people who have a choice whether to remain antisocial. The tragedy would be if we stop trying to find a cure for the people who are truly diseased and stop helping the ones who aren't.

Posted by Orrin Judd at August 6, 2007 8:33 PM

A family member thinks I have this disease. I'm not sure why. My organizational skills are admittedly not very good but I have a number of friends and I don't think I'm antisocial. I do get jumpy if someone touches me and I have trouble looking people in the eyes, and I suppose I have some unusual interests. Those are supposedly some red flags but in my experience it's typical of people to read a story about some disease, see a few similarities in others and jump to conclusions.

Posted by: Matt Murphy at August 7, 2007 12:19 AM

You must read this book: Born on a Blue Day, a memior by Daniel Tammet

DT chronicles his life as an autistic/as person.

Do you know that some AS can read two books at the same time, one eye on each?

Posted by: ic at August 7, 2007 2:16 AM

Years ago we posted a personality test here and seemingly 80% of those males who took it scored as having Aspergers--including all of the Brothers.

Posted by: oj at August 7, 2007 7:17 AM

This is about on par with the 'Deaf Rights" movement that hates the invention of the Cochlear Implant.

It is one thing to celebrate the natural rights of all sentient beings, but it is quite another to celebrate refusal to fix something that is broken.

Posted by: Bruno at August 7, 2007 7:44 AM