AUTISM AS AN HISTORIC STRUGGLE FOR RIGHTS

It just occurred to me that for the first time in history, a group with literally, in some cases, no voice is gathering together in, for the most part, physically no place, for their rights to exist as individuals and a group.

Never has the ability ever existed for people with a communication and social disorder to band together. With women's rights, rights for African Americans and even gay rights there was mobility, numbers, and vocality; this time, the revolution will be blogged. With this movement, I almost envision a dispassionate Stephan Hawkins-like voice giving a passionately written speech. Not a wildly cheering crowd but a potentially deafeningly precise voice at whatever would be genuinely considered harmful to their existence. It's not hard to hear the passion in many of the voices of the autistics, even if it only can be delivered in the written form.

It is surreal that a group of people almost literally discovered and 'incorporated' a little more than 20 years ago with the DSM III criteria, has taken the tool of the day, the ONLY media they could have gathered together in and achieved levels of understanding and comprehension literally impossible just a few years earlier. They (we) have discovered each other; formed groups, formed opinions, discovered common symptoms, dreams, abilities and indignations. Parents found a way to network; Autistics found a voice, both individually and as a group.

Being a parent of young autistic children, I feel like an outsider, watching what's going on but not yet affected by it. But to steal someone else's phrase: if you're watching it, you're part of it; if you're close enough to see it, you're in it. I understand the indignation that many autistics and their families feel about the language being used to describe autism and what should be done. Words like: combating, War, Defeat, Cure, Disease certainly do not invoke a sense of well being when you are in the 'crosshairs' of what they are 'defeating'.

I have been defending the language with something akin to 'the ends justify the means'. That those using the language are only trying to help autism get into the mainstream media and mainstream money. With the advent of the combating Autism Act and that Autism Speaks has gained national notoriety, it seems this has been accomplished. Now is an opportune time to attempt to take hold of the reigns from those who may have been misguided or single minded in their quest to 'save' their children from unseen enemies.

While my sentiments have been with the autistic 'pride', I shall endeavor in the future to be more vocal in the attack of inflammatory language and pressure those large organizations to change their attitude and rhetoric. It's not a war, it's their life...
Bill

AUTISM BLUEPRINT

I made a comment today on the AutismWeb board and I wanted to expand on it a little. The discussion was along the lines of "If you could cure autism with a pill". I'm going to plagiarism my own stuff:

"The 'magic pill' certainly puts a different spin on it all. Implications of changing who they are at the core is disturbing (especially in the genetic manipulation category). I would prefer to work with the 'architect plans' we were given and use the best materials and find the flaws that can be corrected as we build. I would hate to think that I messed with the 'Frank Lloyd Wright' plans to come up with a cookie cutter ranch..."

I liked the Frank Lloyd Wright reference and, as I thought about it, it had more and more connections to my life dealing with a autistic daughter:

• Frank Lloyd Wright buildings went notoriously overbudget, those of dealing with the spectrum, nuff said
• Buildings were often leaky...Again...spectrum...nuff said
• Frank himself, if I recall, was notoriously tough to deal with, not to the extent of many autistics.
• He made the most of the space he had... What was that one house called? Waterfall or something like that. I imagine my daughter has created a beautiful personal space; even if it has only enough room for herself and her fingers in front of her face! She's letting us visit more and more lately.
• His buildings are arguably some of the most beautiful in the modern age. You KNOW MY daughter IS the most beautiful in the modern age. Actually, its 4 way tie with the other girls in the house.

Alright, turned sappy, thanks for listening,

Bill

GOTCHA!

Could also be that I had less than 75 minutes left to think up something for April Fools Day. Sorry...APRIL FOOLS