Monday, January 29, 2007


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...


abfh said...

With this movement, I almost envision a dispassionate Stephan Hawkins-like voice giving a passionately written speech.

Yes... and there really are videos just like that on YouTube. Maybe not Hawkins exactly, but speech synthesizers of one sort or another.

I recommend In My Language by Amanda Baggs. This autistic rights video with computer-generated speech is a very thought-provoking exploration of what we mean by language, awareness, and personhood.

Thanks for your support in this post!


I have seen a couple of these YouTubes. I won't lie and say that having my daughter be non-verbal doesn't scare the living daylights out of me; but that's not going to stop me from exploring every avenue for her ability to express herself. There's a quick witted mind in there, I've 'seen' it; we just need a way to give 'voice' to it.

She's beginning to work well with the PECS, it's just very hard to coordinate it with the various people working with her to be consistant...

Thanks, Bill

Ian Parker said...

Hi Bill,

Nice to make your acquaintance (on and my blog). I've read your comments elsewhere and like what I've seen. It's nice to finally 'meet'.


Thanks for visiting. I hope to start posting here some more. I used to be a fair writer, but writing emails all day has eroded my skills; that and I usually write, then think!
Meanwhile, I admire those of you standing up for, with and within the aututism community.

Do'C said...

Hi Bill,

I enjoyed this post. Indeed the history books should be quite interesting years from now looking back. It's also interesting that as you document your thoughts about the subject, they become part of the subject.