Ok, this is gonna be a bit of a rant as it's something that bugs me a lot....
I’m assuming that Dizzle J Wizzle is reffering to the ‘curebie’ movement when he/she claimed they’re backed by ‘big pharma’ – which of course is the case…and in my opinion why the autism rights movement is played down by the mainstream media.
Sorry if I’ve got that wrong Dizzle J Wizzle. Perhaps you could clarify.
If you look back to the issues being dealt with by the disability rights movement in the 1970s their ideas didn’t really enter the mainstream discourse for over a decade…and even now social concepts of disability still don’t figure on many peoples’ radars. It may be recognised by most people that it’s not OK to call someone with a physical disability ‘handicapped’ but many of them still don’t understand why. Regardless of this though, the persistence of the movement has resulted in many practical and social issues improving (although not enough) for physically disabled people compared with a few decades ago, as disabled access and in-work inclusion policies etc have become the norm and things like mainstream coverage of the Paralympics etc, have helped to keep disability rights issues in people’s minds.
I once read an article comparing the autism rights movement with the deaf movement in its early years. Without trying to draw false comparisons, the author made some salient points about them both involving social and communication issues, but then highlighted the fact that ‘deafness’ is a concept that most people can relate to. Even though without experiencing it we can't fully appreciate how it might feel, we can all imagine how difficult it must be to be deaf in a predominantly hearing world – it’s not a particularly difficult concept to get your head around. There are also some obvious, and usually welcome steps that can be taken to assist with varying degrees of deafness including hearing aids, learning and encouraging sign language as a form of communication, and encouraging the hearing majority to behave in a more enabling/accommodating way – which of course they’re happy to do for the most part, as they can empathise with the concept of deafness.
Deafness, although an invisible disability is also in my opinion often less invisible at the subconscious level than high functioning autism/Aspergers as, once identified in an individual, all non-typical communication signals they send out are then understood by the receiver as being purely down to the deaf person’s lack of hearing. With ASD, our non-typical communication signals continue to be misconstrued or misinterpreted even after we’ve told someone we have ASD, because they just can’t get their head around the concept of what ASD is. It’s almost impossible for them to empathise with; they can’t just put their hands over their ears to block out the noise and go, “Oh, so that’s ASD then”, like they can with deafness. So they do what most people do when they can’t understand something or it’s too difficult…..they apply simplistic rules that they can understand….such as “She’s plainly just being difficult” or “a weirdo”, or "she's simply not trying hard enough"…etc etc… This is the problem with NTs in my experience….they have empathy (and bucketloads of wasted sympathy) for people they can identify with, but they have no empathy with anyone who doesn't conceptualise the world in a similar way to them (which begs the question, what's their 'disorder'?)!
I think it’s also worth mentioning (and I’ll probably be pilloried for this) that our autism presents itself very differently from that of people with severe autism with learning difficulties. I think the majority of NTs will find it far easier to empathise with the parents of (visibly) severely autistic children than they will with us apparently “stroppy/antisocial/quirky” types, who as I’ve already pointed out, they are absolutely incapable of identifying with.
Anyway, the author of the article (which was in an academic journal and not the mainstream press) believed that the autism rights movement, although embryonic had the potential to take off in the same way as the deaf rights movement in the coming years, and that this would be facilitated by use of the internet as a communication tool that many people on the spectrum feel more comfortable using to support each other and share their ideas. She believed that it could not have taken off before the advent of internet because of the amount of physical social interaction that would have needed to have taken place.
Much as I’d like to think that her optimism was well founded , I think there is another key difference between the autism rights movement and many other social disability movements – which takes me back to the point made at the beginning. Whilst’ the pharmaceutical industry still have a financial interest in the medicalization of autism for the purposes of ‘discovering a cure’, any movement that challenges their medical standpoint, attempting to place autism firmly back in the social corner and garner acceptance by the mainstream will be blocked, as they have the lobbying power and the financial backing to make their voices heard by governments and in the mainstream media….and we don’t. Look at how the medical establishment tried to silence people with psychiatric problems for so many years….the recovery movement has only taken off in mainstream parlance since it also became the cheapest option for governments in welfare terms….and even then I’m sure ‘big pharma’ only permitted its promotion because pharmaceuticals are being incorporated into the mainstream recovery ethos.
It’s no coincidence that the article I described was in a sociology journal. I’ve read many similar articles in academic journals, discussing the world of online aspie communication and what can be learned from these interactions that might help improve public services etc for people with ASD/Aspergers. Most of these are written by well-meaning social work types who are genuinely interested in working with us in fighting our corner. Unfortunately, I’ve barely come across any positive articles in the mainstream press relating to ASD; the only purportedly positive stories are in relation to medical ‘breakthroughs’ or the occasional light-hearted non-article about how great aspies are supposed to be at computer programming. Other than that it’s all doom & gloom of the kind stabulator mentioned.
No coincidence!
29 Sep 2013, 9:44 pm
as far as we know the extermination of Autism is impossible but think it is most prudent for us to assume that there is a danger and we should be on guard)
