(Trigger warnings: ableism, eugenics, murder, abuse, torture, ABA, bullying)
Autistic people have been criticising the American non-profit organisation Autism Speaks for years, while they ignore us and actively try to silence us. For people who are unfamiliar with Autism Speaks, here is a summary of what it does wrong:
- There are no Autistic people in positions of power within Autism Speaks. They used to have an Autistic person, John Elder Robinson, on their science advisory board, but he resigned in protest against a piece of hate speech written by the organisation’s co-founder.
- Autism Speaks promotes hatred, fear, pity and stigma of Autistic people. They portray us as tragic burdens who destroy our families. They have compared autism to cancer and Autistic people to ‘lepers’.
- Autism Speaks spends only 4% of its budget on services for Autistic people and our families.
- They fund research aimed at preventing and curing autism. Many, quite possibly most, Autistic people are opposed to prevention and cure of autism because we see autism as inseparable from who we are.
- Autism Speaks has indirectly supported the murder of Autistic children by their parents in a video and in a Facebook comment.
- Autism Speaks supports the use of applied behavioural analysis (ABA) as the best therapy for Autistic children at the expense of other therapies. ABA has been heavily criticized and can even cause PTSD.
- Autism Speaks has supported a residential school that tortures its students.
There is a Boycott Autism Speaks movement.
So when this happened…
…Autistic people and our allies saw an opportunity.
We pretty much took over the #AutismSpeaks10 hashtag!
And this time, somebody listened to us. Buzzfeed featured a news article on the takeover. A few other articles have also been written about it:
Autism Speaks asked people to email their positive stories instead. They abandoned #AutismSpeaks10 and switched to using #AutismChampions. Autistic people stared posting in the new hashtag.
It’s not the first time Autistic people and allies have taken over an Autism Speaks hashtag. When Autism Speaks created the hashtag #Mssng to promote their genetics project, Autistic people used #Mssng to express their hurt and anger. ‘#Mssng’ implies we are lacking something important, and that autism has hidden our true, neurotypical selves. The same piece of hate speech that prompted John Elder Robinson to resign referred to autistic children as missing. And when a hate group is collecting genetic data on their targets, it’s easy to imagine that ‘prevention’ or eugenics is the goal.
I sat at my computer watching new tweets appear in the #AutismSpeaks10 or #AutismChampions, retweeting them, and seeing other Autistic people retweeting them again. I felt some kind of collective emotion, of anger and excitement, which I’d only really felt before during #Mssng. In groups made up of mostly NT people I had been aware that other people were experiencing a collective feeling, but I was apart from it. Andrew Main’s parody description of allism (a fictional diagnosis that represents the absence of autism) describes allistic people catching emotions from each other and these emotions becoming amplified as they spread through a large group. Many Autistic people are proud of their independence of thought. But since I have experienced something like this spreading of emotion, I wonder if it comes about because a group of people have similar neurology and experiences, not just because of allism.
#AutismSpeaks10 has distracted me from my university work, but good things have come out of it for me. Some of my #AutismSpeaks10 tweets were retweeted by Amy Sequenzia and Lydia Brown, two Autistic disability activists who I greatly admire. I’ve been added to a list of Autistic Autism Activists on Twitter. I would never have called myself an activist, since the only thing I do that resembles activism is tweeting in support of the Boycott Autism Speaks movement. I feel honoured to be included along with so many people I admire. Taking part in the hashtag made me feel proud to be part of the Autistic community.
Supporters of Autism Speaks also posed in #AutismSpeaks10. A few of them pointed out that Autistic tweeters can’t speak for those who are unable to tweet. Which is true, but they also implied that Autism Speaks and its supporters can speak for Autistic people who can’t communicate in a way the majority understands. I don’t see any reason why allistic people can better represent the interests of people with limited communication than other Autistic people can.
Strangely, several people posted pictures of their happy Autistic family members, thanking Autism Speaks. These messages don’t fit at all with the way Autism Speaks describes our families’ lives, so it doesn’t make sense to me, unless they consider their Autistic family members to be ‘cured’.
And disturbingly, some parents of Autistic children used the hashtag to bully Autistic adults.
I really hope the Buzzfeed article will encourage people to stop supporting Autism Speaks, and that this is the start of a larger backlash against them. But Autism Speaks is powerful, and has recently been promoting itself on American TV programmes that didn’t mention the criticism by Autistic people. I’m still scared that they will wipe us out before we manage to convince the majority that Autism Speaks is wrong and that Autistic people should exist.