Sunday, May 20, 2007

A Glimpse Behind the Autism Curtain

Amanda Baggs, the remarkable young woman who's blog I have been reading ever since I discovered it, talks at length about the challenges facing herself and other autistic individuals. Those of us who are (I love this term) neurotypical have no clue how hard it is for others to communicate.
Go have your senses worked on. Read this post carefully from beginning to end.
Then read the comments.

...Treating a person equally is not the same as treating them identically. If you have to pretend my brain works just like yours in order to see me as a person, you have a problem. And you are creating a problem for me: people who do this will almost invariably be incapable of seeing the extreme inequality they are perpetuating between us. Making wheelchair users climb stairs is not “equality,” and neither is pretending my brain works like yours if it doesn’t. To do this sort of thing to someone is not a compliment, it’s a form of erasure, you’re ignoring who they are and you’re putting barriers in their path that don’t have to be there.

But that's not all...

This autism business is a vast unknown universe for those of us who have never known anyone autistic. We hear the word in conversation or catch a glimpse of a different world on television. But we live in ignorance of the everyday realities that autistic people face.

Here is another illustration from the UK...

Teenager Rory Hoy has won three awards for his film about what it's like to live with autism. The work rings so true because it's told from personal experience. Sheena Hastings reports.

IMAGINE not knowing that when someone calls your name you should probably turn around, wave or shout back. Imagine being overwhelmed and maybe panic-stricken by crowds and loud noises, whether they're in a school corridor or a shopping mall.

Imagine waking in the morning and having no idea of what happens next, and with bodily sensations that might be hunger or the need to go to the loo – you're not sure which. And, when someone uses an everyday expression like, "It's raining cats and dogs", you look to the sky in terror, in case a spaniel lands in your lap.

It's a lengthy piece. Highly recommended. Read the whole thing, with this near the end.
"Whether it's because he's autistic or not, we don't know, but he sees things from a different angle to the rest of us, and his angle is a highly-imaginative one."

Rory and his parents are often asked to meet other families with a young autistic child, so that those at the beginning of the journey can see what progress is possible with enough attention, love, good teachers and co-operation between family and school.

"One of the many positives about Rory is that he lives very much in the moment, and doesn't see obstacles," says Geraldine. "That makes him optimistic, and usually very cheerful. We've learned so much from him, and it's been a privilege that we've been able to enter his world, and bring him into ours."

Thanks to Autism Diva for the links.

Her blog is a rich wellspring of information about autism. If you are new to the subject, I advise take your time. Do a lot of reading and reflecting. This is not a simple topic with quick and easily understood questions and answers. There is a spirited debate within the autism community that non-autistic people need very much to know about. Even more, there is within that community what can be thought of as a "counterculture," a growing critical mass of articulate individuals whose advocacy on behalf of autistic people has recently become more in-your-face, mainly because they represent the voices of autistic individuals themselves.

The message I am hearing from autistic people is not the same as what I find from non-autistic educators, therapists, researchers, and other well as family members, neighbors and other lay people whose concern with autism derives from observation, not personal experience as someone who is autistic. A growing number of non-autistic advocates are organizing and speaking out.

Discussion threads make reference to acronyms and buzzwords that strike the newcomer like another language. ABA means Applied Behavior Analysis. RSI stands for Reciprocal Social Interaction. They are not the same, and in fact represent two very different approaches to interacting with autistic children and adults. And like all such shorthand references, each carries with it philosophical and cognitive implications not understood by newcomers to the conversation.

It's an exciting time to watch and learn. I'm still in the learning stage. And what I am finding is that in the same way that society denied the contributions of women, racial minorities and other populations because of embedded prejudice, there is a creative and important source of energy that will take human social development to yet another level.

1 comment: said...

I was lucky to have spent a lot of time with autistic individuals while I was growing up...when my boys were having their vaccinations I was a wreck worrying about thimerosol. I will check out this blog you linked to.

It will be an easy thing teaching my boys about the autistic little girl across the street from us...and the way I go about it will most likely come from what I read when I visit this site.

Thanks dude - - - I was hoping for something uplifting when I came over here.