April is Autism Awareness Month.
Are you aware of autism?
Excellent, we’re done!
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.