29 March 2013

Autism Speaks video "I Want to Say..."

The video is called "I want to say...". The organisation is called "Autism Speaks". I've said it before and I'll say it again, autism isn't doing the talking here.

I had thought this video might share more of what the autistics included in it wanted to say. Instead, parents are lovingly describing their kids. The doctor is intensely talking and telling us what to think. The teacher is sharing his heartfelt experiences and observations. The technology used by the kids is paraded before us occasionally, while adults describe their observations of how it appears to work well, almost miraculously. These voices are fine, in general. But really, where are the voices of these children we are watching? What is their message? What do they want to say? What was it like for these young people to finally be able to communicate? How did they feel?

This was a wonderful opportunity to allow them to share, to educate us on their experience. An opportunity sadly set aside.

Autism Speaks' latest promotional video is a vast improvement on the blatant scaremongering of the past, where they would show frightening scenes of screaming children, desperate crying parents and families in disarray. Before, they slapped us in the face with terrifying trauma and told us that was autism. Disappointingly though, I find this new one more cunningly manipulative.

There is still some clear intent to frighten viewers, with alarmist statements from the doctor, such as "more children will be diagnosed with autism than AIDS, diabetes and cancer combined". These things don't belong in the same sentence with autism, and this statement is offensive and irresponsible. It's an unreasonable comparison - all three of those others are potentially deadly and devastating diseases. Putting these together is Autism Speaks' cunning way of continuing to perpetuate their ongoing message that autism is a disease. They have declared war on autism, so I guess we shouldn't be surprised if they hold onto their original message in different forms.

Let's be clear - autism is not a disease.

Also, the intensely dramatic statements by the doctor make it seem like more and more children will get autism over the coming years, and we should all be very afraid. He is making it everyone's potential problem. It appears his role is to intensify the urgency of the "problem" and make people want to send money before their child gets autism. Without actually using the word, he is cleverly reminding us of the long time message of "epidemic". At least previously, they came right out and said it. It feels much more manipulative now, and honestly I find it disingenuous, condescending and offensive.

I loved seeing all the beautiful children and their experiences. I loved seeing the passionate parents who obviously love their children completely as they are, and only want what they think is best for their kids. (Sure, they made some mistakes, but it was a nice change to see adoring parents instead of overwhelmed parents on one of these videos). I loved the teacher, and his obvious humility in the face of the courage of his students. I appreciated his honesty when he described how he realised now, that he had previously pushed them so hard, without knowing what he had been putting them through. There was generally a lot more empathy expressed for the experience of the kids as well. I wish though, that the kids got to communicate more. Nobody was asking them questions for the video. I wanted to know what they were thinking, instead of having that guessed by and those guesses imposed on me by neurotypical adults. It seemed like it was more important to show a blend of minorities across genders (which I will say, is still an improvement on the previous videos), than to take a moment to hear what these young people had to share.

I always love seeing Temple Grandin on anything, she is so awesome. But where were the other autistic adults? And anyway, she was talking about her experiences as a child. Do Autism Speaks really still not realise that these same challenges/needs exist for adults? Or is this a  purposeful exclusion of autistic adults because they have clearer messages about what they want/need?

Other phrases/statements which bothered me:

"Swallowed by his autism" - in that particular case, he is swallowed by his pain, not autism. Autism does not equal pain and the two concepts should always be separated. And besides, the autism was already there, it is who he is. To act like it is a separate entity, some sort of invisible enemy swallowing him up, is not okay.

[Autism] "is a nightmare imposed"- the doctor should know better than to use alarmist words/phrases like this.

"He's really sweet, for being an autistic child" - this suggests that autistic children are generally something other than sweet. Apparently this boy must be very unusual, to be considered sweet. I know this is his mother (a layperson) who says it, not Autism Speaks. But Autism Speaks chose to include it in the video. Shame on you, Autism Speaks. How irresponsible can you be?

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