Originally published at a denizen's entertainment. You can comment here or there.
Recently the organisation Autism Speaks released another video. You can see it by following this link here. A transcription of the audio can be read here. This is the outcome of "[a] press release [from August that] encouraged families to submit videos of autistic individuals for a PSA that would "shine a bright spotlight" on autism."
Naturally I and a whole lot of other people take issue with this supposed public service announcement. It wouldn't be fair, though, to attribute the views expressed in that video to all members of families of autistic people, nor even necessarily to all people who contributed footage to the final product. abfh|Whose Planet Is It Anyway? points out that people have felt deceived by this request and the results:
Would the contributors to the "I Am Autism" video have agreed to participate if Autism Speaks had admitted at the outset that it was planning to demonize autistic kids as embarrassing burdens who destroy their parents' marriages and dreams?
Well, at least one parent who posted a comment on the video's YouTube page, under the name BarrysDaughter, made it quite plain that she felt deceived by Autism Speaks' request for video contributions from parents. She wrote:
"I do have 2 autistic children and a husband on the spectrum. When they first suggested a video I was eager to send them one till they outlined what they wanted.
My children and husband don't want or need to be CURED what they do want is people to treat them the same as anyone else, stop the bullying and put more staff in schools to support them…"
My problems with the video. It is not addressed to autistic people. Indeed, the request for videos and the result of this request, despite being purpotedly for an autistic advocacy organisation, does not acknowledge the existence of autistic people. They don't talk to autistic people, they talk to the families of autistic people. They don't acknowledge that autistic people may have desires, or acknowledge anything as being a problem for autistic people which those people might want something done about. No, they address the desires of families of autistic people, they talk about what families of autistic people want for their own benefit, they talk about the suffering of people who associate with autistic people, they describe the autistic community as 'people who know autistic people'.
There is a tremendous failure of empathy on display in their selfish wish to eradicate autism from existence. Do not pretend they speak only of those to whom terms like 'low-functioning' or 'severe' are applied when they use words like
"I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain. You have no cure for me."
Is there any moderation in that? Any room for them to say "Ah, but we do not mean you who are 'high-functioning'? (by which is meant "Your life is easy, you have no problems and no relevance to this subject, so be silent")" It is a plain statement of what Autism Speaks considers autism to be - a debilitating and horrific condition which must be eradicated. No acknowledgement of the voices of autistic people. Rather, those are described as stolen away, so that others can pretend to know what these voiceless unfortunates want and claim desires in their name.
What they are doing, is not helping. Help would be to reduce the stigma of autism. Help would be to not portray it as some malevolent force which steals otherwise 'normal' children and hides them behind a monstrous facade. Help would be not be not comparing autism to a fatal illness. Help would be acknowledging the existence of autistic adults. Help would be pushing for the ready availability of accommodations that will aid autistic people and others with disabilities. Help would be publicly speaking out against the vast number of sham 'cures' which do nothing, or worse, so that people do not go bankrupt on the false hope of rescuing their family from the hell you have convinced them autism dooms them to. Help would be supporting health care reform so people do not have to worry about going bankrupt for medical reasons. Help would be listening to autistic people instead of speaking over them.
Not all of those things are entirely absent from their website on inspection, but they have a long way to go if they ever want to be a resource and organisation for the benefit of autistic people. Right now they look more like an organisation focused on eugenics to eradicate a segment of the population. I'm sure they don't see it that way. I expect they believe the best outcome for autistic people would be to cease being autistic and eventually cease being born, instead of whatever each autistic person considers eir personal preferred outcome. Accommodation and support I think benefits everyone, while the current state of Autism Speaks' rhetoric does not.
Further responses to this video and the organisation behind it can be found here: http://autisticbfh.blogspot.com/2009/09/solidarity.html
 Also annoyed by people who leap on the statement that among faith, technology, prayer, herbs and genetic studies people will also fight autism with voodoo, as something outrageous. Though I would not be surprised to learn either that this was included as an example of desperation, still voodoo despite being a religion associated with black people rather than white is not any more or less silly a thing to call on than, say, Christianity.