Friday, January 19, 2018

The Problem with Autism Speaks: A Primer for Well-Meaning Library Staff

Note: this post is heavy with links so you get the full picture. Please read all of them.

This  post is inspired by an email I recently wrote to ALSC, which I was informed has been forwarded to their leadership. Following and making friends with quite a few members of the disability community in the past year or so has alerted me to this specifically, and I want to make sure library folks at a large are aware. Many people in our profession are in fact #actuallyautistic, and a few have written about their experiences.

Accessibility series logo


We need to talk about the view a very large and growing percentage of autistic adults have.

They see Autism Speaks as a harmful organization. At best, as I've come to understand, Autism Speaks is seen by many, many #actuallyautistic people as exploitative (Autism Speaks is often shortened by disability activists as A$); at worst, it's seen as a hate group.

A hate group.

Has your library partnered with Autism Speaks? Do you have "Light it up Blue"* displays  or other events related to the campaign? Do you refer to articles and resources from Autism Speaks as a go-to resource for autism-related tips, especially on behavior? This post is submitted for your consideration.

I know this is not widely known information for people outside the disability community, so especially in the recent climate  want to be clear that I come to you not to shame but to provide information and make this humble request in the hope that library staff receive the most disability-centered information possible, as well as stop partnering with this organization.

You may be wondering why so many people dislike Autism Speaks. There are several reasons; here are a couple:
1. Autism Speaks has a long history of centering allistic/non-autistic voices in their resources, prioritizing the feelings of abled parents and caregivers rather than centering autistic individuals and what is best for them. This includes an uncritical support of ABA therapy, which many autistic adults have spoken out against. Accusations span from it being traumatizing to denying autistic children the allowance we've recently begun to grant children as a whole as a society: that behavior is communication. Mel Baggs illustrates this in action in a great post called "Exactly Who is Unresponsive Here?"

2. Autism Speaks sends harmful messages to autistic children. Many people in the disability community live with internalized ableism, and autistic people who have written about it cite Autism Speaks's specific place in contributing to it. The puzzle piece analogy adds to it.

3. Autism Speaks sends harmful messages to parents with autistic children. Where empowerment and community are needed, fear can be instilled under the guise of "validation". One video that has now been removed due to criticism called "I Am Autism" was filmed like a horror movie and included lines like "“If you’re happily married, I will make sure that your marriage fails” and “You are scared, and you should be." Another video, that Autism Speaks has since taken down but has been uploaded elsewhere and was accepted to the Sundance Film Festival the year it came out, paints a bleak existence of living with autism including this clip of a mother considering murder-suicide right in from of her daughter. This type of messaging can lead to overworked and isolated parents feeling as though this is a righteous decision, and public opinion and courts can show sympathy for the accused.

4. Autism Speaks focuses on a "cure" for autism, rather than helping to reduce barriers for autistic people who already exist. You know, why help people exist when you can eradicate them instead?

The view that Autism Speaks is a hate group is not shared by all autistic people or autistic families, but enough people do that it's worth finding other organizations to partner with and learn from, and other displays and programming (how about an #actuallyautistic or #WalkinRed theme?) in support of autistic people to offer.

Please stop referencing Autism Speaks as a go-to resource about autism. Please advocate for this change in your library and community. A much better resource and partnering organization is the Autism Self-Advocacy Network.They do such good work and need your donations way more than Autism Speaks does.

Groups like FACT Oregon are family advocacy organizations that are in tune to the disability community and are dedicated to empowering families. While they have several resources for planning for families in the early years, you will find there is no mention of Autism Speaks on their website. They are creating a supportive community of parents who are educated about their rights in IEP meetings and rally for legislative days to demand proper funding for accessible education. It can be done.


*this campaign plays into the stereotype that more boys have autism than other genders, which leads to girls and NB people going misdiagnosed or undiagnosed

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