April is Autism Awareness Month.
Are you aware of autism?
Excellent, we’re done!
Just kidding.
Let’s start over.
April is Autism Awareness Month. Originally developed in the 1970s, it’s designed to educate the public about autism and what it means to be autistic, demystifying autism and fighting ableism directed at autistic people. Like a lot of other ‘awareness’ initiatives, it’s been plagued with problems, and a lot of those problems are compounded by Autism Speaks, which is an extremely high-profile ‘advocacy’ organisation that you shouldn’t be supporting.
There are a lot of great reasons not to support Autism Speaks, and one of the most important to me is the fact that the organisation has no autistic people on its board. Unlike the Autistic Self Advocacy Network, which lives and breathes ‘nothing about us without us,’ Autism Speaks reinforces the idea that people with autism cannot communicate, cannot articulate ideas, cannot be their own advocates. Autism Speaks, all right: for the parents of children with autism.
This is a common problem in disability advocacy. Instead of focusing on people with disabilities and their own lived experiences, including what they have to bring to the table and their differing opinions on policy and other issues, the focus is on their parents and other loved ones and how disability impacts them. This inherently positions disability as an externality, something that happens to someone else, to people who are not quite real, to faceless and amorphous individuals rather than actual human beings. It also positions disability, typically, as something that requires endless sacrifice, work, and misery from the people around the disabled person. And, of course, it suggests that disabled adults don’t exist.
Autism Speaks and organisations like it silence people with disabilities. The organisation’s name is fantastically misleading, as is its tagline, ‘it’s time to listen.’ It is time to listen, but not to Autism Speaks.
It’s bad enough that the organisation doesn’t actually include autistic people in its endeavors, but the kind of rhetoric it propagates is also really harmful. Instead of promoting self-advocacy and independence, it effectively promotes elimination of people with autism. This is very upfront and clearly advertised, as well; Autism Speaks makes no bones about the fact that it thinks people with autism shouldn’t exist. The organisation’s own mission statement leads: ‘We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism.’
This is eliminationism, where autism is positioned as a problem that needs to be solved, and actual autistics aren’t mentioned at all. When you’re talking about ‘curing’ autism, you’re talking about getting rid of human beings. The attitude is reinforced in the kinds of ‘awareness’ campaigns the organisation is involved in, which routinely position autistic people as a burden to their parents and society in general. The overall message sent in these campaigns is that autism is a terrible, bad, no-good, horrible thing, and that people saddled with an autistic child live in misery and woe. With the claim that autism is something that needs to be eradicated, the organisation writes off existing people with autism and their own needs, and certainly does nothing to support self-advocates and people who see autism as anything other than a horrible thing.
Autistic adults are strangely absent from much of the organisations marketing and awareness campaigns. Especially those who are successful self-advocates, illustrating that being spoken for is actually both insulting and not necessary. Anything that doesn’t fit the narrative is quietly swept away, and Autism Speaks has a chokehold when it comes to lobbying, interacting with policymakers, and direct involvement in decisions that affect the autistic population in the United States. It pressures the Centers for Disease Control into substantial spending on autism, for example, which sounds great on the surface, until you realise that most of this spending is directed at research.
Because direct family services aren’t a priority for the organisation. People donating to Autism Speaks may be under the impression that they are directly helping autistic people, but this is simply not the case when the vast majority of contributions are funneled into research, fundraising, and administrative expenses. Helping autistic people is better accomplished by working with groups like ASAN, or looking for locally-based self-advocates who need funding or in-kind donations to reach the autistic community; a community that includes adults, not just children.
Autistics who have criticised the organisation have been sharply rebuked, when they’re not being ignored. Attempts to get autistics on the board of Autism Speaks have been repeatedly rebuffed, and defenders of the organisation shout autistic people down when they demand that the group live by its own tagline and take a turn listening instead of speaking. Or, indeed, move beyond narrow bands of communication where speaking and listening are the only ways to convey and receive information.
Autism Speaks is a hateful and deeply harmful organisation, and self-advocates are constantly having to work to undo the messaging of Autism Speaks. Instead of spending the month of April educating people about autism, comparing experiences, advocating for themselves, speaking out, fostering disability pride, self-advocates are forced to spend their time explaining why people shouldn’t contribute to Autism Speaks or circulate its materials.
An advocacy group with the kind of power and social clout Autism Speaks has could be doing immense things for autism, and Autism Speaks definitely is, but they are bad and terrible things rather than excellent ones. Sadly, Autism Speaks is probably going to continue to dominate the landscape while smaller organisations remain largely unknown. Groups like ASAN enjoy a fraction of the visibility because they represent everything people are afraid of: autistics speaking for themselves, rejecting eliminationism, being out and proud, demanding full social inclusion, and working for better lives for people with autism, rather than trying to get rid of autism altogether.
18 Comments
Thanks so much for this article s.e. – it’s short, to the point, and the perfect reference for sharing with people who don’t yet know the truth about Autism Speaks, which unfortunately is quite a few social-justice-y people I know.
To me, it seems like the other main problem with Autism Speaks (other than the deal-breaking lack of autistic people in leadership positions), is that it presents a single, homogeneous view of what autism looks like, and doesn’t allow in the least for a diversity of experiences (which is a extra preposterous given that ‘specturm’ is right in the name of the ‘disorder’!!) nor a diversity of perspectives on any of those experiences.
And with regards to Autism Awareness Month, ThinkGeek is doing a fundraiser for the Austism Self Advocacy Network and selling these sweet Neurodiversity t-shirts: http://www.thinkgeek.com/blog/2012/04/april-donation-asan-and-the-ne.html
Many thanks for this.
I’m one of those poor autistic people who is unable to communicate, or advocate, or do anything other than be a burden on society.
According to Autism Speaks, that is.
The better day to highlight is Autism Speaking Day: http://autisticsspeakingday.blogspot.co.uk/
Autistic people do have a lot to communicate. I’d be willing to bet that most neurotypical people who think they know what being autistic is like actually have no real idea. Autistics Speaking Day is a chance to change that – if people are willing to listen. Given that 1% of people are on the spectrum, some comprehension would be nice.
Thank you so much for this important and informative article. I am happy to have read this because a society I am president of has been considering doing events for a number of charitable organizations and Autism Speaks was suggested by one of the other executives. We have many members in the society who have varying degrees of Autism spectrum disorders diagnosed, and wanted to show our support for them. I will definitely push for us to consider an alternative organization which deals with autism and assisting autistic people without an elimination agenda. Thanks again, I really appreciate the awareness booster.
Thank you for the info. Our local high school admin allowed an Aspergers youth to be bullied into suicide. This might prevent another death at the hands of the local Deliverance set.
I’m so glad you wrote this! I’ve been half joking for YEARS that we need an “Autism Speaks Awareness Month,” and try to do a linkspam every year rounding up all of their issues. I’m a proud member of ASAN; I’d love to see us get half the respect Speaks does.
Dragon_Snap:
ThinkGeek set out to give money to Autism Speaks a while ago. People called them out about it on their Facebook wall. At first, whoever was running the Facebook page started blaming their fans for it because the organization had won a poll. Then someone linked to an article about how it’s a poorly run organization and it sounded like they were wising up about it. I have no idea what happened with that because I got tired of keeping up with the comment thread.
The whole thing was pretty weird. I was wondering why that logo appeared on my Facebook wall, and when it turned out it was because of ThinkGeek, I was furious. I thought they were alienating a lot of their customer base and it turned out I was right.
I’m glad they’re giving money to worthier organization but it’s not something that just happened. But hey, it is pretty good to actually be listened to.
I am not all that familiar with the autistic spectrum, but I thought that Asbergers was no longer considered under the Autism spectrum for some reason.
And I do agree that it is terrible to have organizations that aim to speak for all people who have a disability as though they are a hive-mind while also not letting people who actually come from that point of view say anything.
On the other hand, when I took a psychology class in college, they did end up showing a video of varying degrees of autistic people and some of the most severe cases don’t sound like they would be a fun thing for the autistic person either.
Of course, it was explained to me by my aspie friend that when it comes to those with aspie tendencies, his experience is feeling really detached from social and interpersonal interaction but wanting to belong and feeling kind of alienated with no real reason, whereas he’s noticed that most of the severely autistic tend to have no interest in the outside world whatsoever.
Of course, this is all second-hand knowledge and I don’t want to presume about things that I am not well-versed in, but this is very eye-opening and interesting to me. I definitely am interested in finding out more about this topic!
Wow, it’s like deja vu – I just just juuuuust wrote this for class yesterday. Granted, it was in the context of shifting perspectives of (what to do about) difference, specifically the way they play out in the historical part of Just One Of The Guys? Transgender Men and the Persistence of Gender Inequality, but for some reason, they could’ve been brain-twins or something. (Except for the part where yours was a billion times better and more concise, naturally.) A day later, and I could’ve just linked to this and said “what ou said.”
I have a son (now 21) diagnosed first with Autism, and then later with Asperger syndrome (same symptoms, different DSM.)
We ran into two problems in dealing with the outside world: first, because he didn’t fit the rocking/headbanging/weird-noise-making stereotype of ASD, people assumed he was the way they thought kids should be, and treated any deviation as willful defiance or bad upbringing. Second, those who actually saw that he was ASD tended to treat him as some sort of non-human animal, like a dog or a cat, sort of the way 18-th and 19th century Europeans treated Africans or South American Indians. This included some medical professionals who IMHO should really have known better.
I think the problem is that there is a very narrow range of social behavior and reactions that is considered “normal,” but because most humans fall within this range, we aren’t aware of just how narrow it is. People with ASDs are simply people who fall somewhere or other in the vast territory that lies outside of “normal,” and on the whole differ as much from one another as they do from neurotypicals. In order to deal successfully with people with ASDs, you have to get to know and adjust to each one as an individual. Most people, including people who deal with children, don’t bother, because with most people, you don’t have to.
I’m glad you brought up the point about ASD adults. ASDs are developmental disorders, and focussing on children, and the most extremely impaired ones at that, obscures the fact that most of these children eventually grow out of and/or develop coping mechanisms for their impairments. It also helps that as an adult you can get away with the little weirdnesses that got you mercilessly bullied as a kid.
@7: … I thought that Asbergers was no longer considered under the Autism spectrum for some reason.
I don’t doubt that someone, somewhere, has “considered” this. There’s a lot of disagreement about almost everything in this area, including how to label things.
(BTW: is there some way to enlarge the text entry window for comments to something bigger than a postage stamp?)
Quijotesca: Thanks very much for sharing that background, of which I was definitely unaware. Autism Speaks does an extraordinary job of presenting itself as a worthy organization – I’m sure the disingenuous and misleading name is a big help.
The text about the fundraiser on ThinkGeek’s website looks pretty legit to me, including their reasons for picking ASAN: “ASAN is a nonprofit organization run by and for Autistic people. ASAN was created to provide support for people on the Autistic spectrum and to provide a genuinely autistic voice in the world, bringing autistic people to the forefront of community conversation about autism.”
It really sucks that ThinkGeek didn’t do their homework in the first place, as I originally thought, but it seems as though they listened to people’s concerns (eventually at least), and actually understood them. I’m not saying they deserve a cookie or anything, but it certainly gives me hope for the world at large.
YES. Yes yes yes. I’m the proud mom of an Aspie son who is NOT a goddamn puzzle piece. I saw those blue lightbulbs on sale as part of Autism Speaks’ “awareness” campaign and realized that they want to co-opt, market & brand ASD just like Komen did with breast cancer. The concerns of people actually dealing with autism and/or cancer are irrelevant to the survival of the corporate foundations.
Thank you! I’m on the spectrum myself (Asperger’s) and work at a grocery store that took part in that Light It Up Blue thing for Autism Speaks. It was upsetting to go to work for those two weeks. The blue things everywhere, announcements about how the store was ‘proud’ to support Autism Speaks every few minutes, little informative puzzle pieces everywhere about how autism is AN EPIDEMIC!!, and supervisors who were not in the least understanding about why I didn’t want to solicit donations or wear blue shirts. Luckily, most of that misunderstanding was, well, thanks to my Asperger’s. Once I got angry enough to send my supervisor an email, she said she understood where I was coming from, and that it was fine if I didn’t participate. At least, with my direct supervisor. . .the woman who was actually running the campaign was saying vaguely threatening things that seemed to suggest that I wasn’t part of the company if I didn’t want to participate in ‘a company initiative’, but luckily nothing came of that since I barely work when she’s around.
One problem with Autism Speaks is that it’s basically the only voice people hear about autism. . .which is so horrible when it’s such a shitty voice. It’s not uncommon for otherwise good people to be taken in by it and think supporting them is a good thing. I hadn’t known what was mentioned in the comments about ThinkGeek, and it sucks that they had supported Autism Speaks in the past, but I find it encouraging that they’re supporting ASAN now. It seems like they actually listen to people who criticize them. Now if only I could get people I know to do the same.
D/x’d PDD-NOS (some kinda autism that didn’t fit into a neat DSM box) at 14.
aut$peaks doesn’t speak for me. Good column.
This is old news, but not only does Autism Speaks position itself as the only “advocate” for people with autism, it bullies actual people with autism into silence: http://autisticbfh.blogspot.com/2008/01/autism-speaks-silences-autistic-child.html
For a work assignment I have been reading and linking blog posts and news articles about autism. I’d been taking a lot more care with this than with other topics to keep out woo (antivax woo especially, but any woo) but this post was a helpful reminder to also monitor posts I link to so as to avoid giving positive attention to neurotypical people speaking for autistic people, neurotypical people describing what autistic people experience, or neurotypical people explaining autism other than in a strictly neurobiological sense.
Thank you very much for this entirely relevant article. As someone who works one-to-one with several autistic children, it has been made emphatically clear time and time again that even those with the most “severe needs” have enourmous potential for communication – if you spend the time listening.
Trained proffessionals have so much they could offer to autistic children and adults if they worked for them, instead of doing what “normal” people thought all the autistics wanted.
On the other end of the spectrum you have my closest friend – a beautiful and vibrant woman, who happens to also have autism. She is a powerful advocate, and the thought that she might be silenced, eradicated, or thought of as being in any way less-than is more criminal than stupid.
Autism Speaks is just a tea party front group founded with Home Depot ceo Bernard Marcus millions. He ran ads against the affordable care act with the groups money, making it a political organization. Combine that with the eliminationism, his union busting, his calling occupiers imbeciles and his war lust we are talking about a very deranged authoritarian eugenicist individual.
@7 and 9
Asperger’s is currently considered to be an Autistic Spectrum Disorder. However, when the DSMV comes out the diagnosis of Asperger’s is going to be eliminated and will just be called “high functioning autism.” Personally, I have found both positive and negative effects to using the hfa term instead of Asperger’s; as autism is a more well-known issue it gives me more allowances for my differences but also more stereotypes that I don’t fit into.
As an Aspy, who can and has spoken for herself, thank you for this article.