Keep Autism Speaks out of library-service discussion

As a woman on the autism spectrum who is beginning a library career, I was excited to read about Project PALS online training for library service to people with autism.

Project PALS is a joint venture between the Partnerships Advancing Library Media (PALM) Center and the School Library Media Center at Florida State University’s School of Information. PALS stands for Panhandle Autism Library Services.

I am a strong advocate for the success of any project that enables library staff to better serve patrons who are on the autism spectrum.

Of particular interest was a statement by American Libraries Direct in its brief write-up of the program, that Project PALS developers “teamed with people with autism.” But when I clicked through to the Project PALS news release, I encountered a reference to “Autism Speaks.”

It concerns me that Autism Speaks is quoted in course description and publicity and that Project PALS describes it as an “advocacy organization.”

Project PALS organizers need to know that Autism Speaks is not an “advocacy organization,” but a promoter of hateful and degrading stereotypes. I recommend “No More - A Letter to Suzanne Wright” at A Diary of a Mom for a comprehensive write-up of the ways that Autism Speaks demonizes people with autism, including descriptions of its loathsome films, “I Am Autism” and “Autism Every Day.”

(At Autism Women’s Network, Lei Wiley-Mydske reviews Autism Speaks’ 2014 documentary, “Sounding the Alarm, Battling the Autism Epidemic.” She draws attention to its continued rhetoric of combat — which self-advocates and allies reject, its out-of-context citing of autism’s increased rates, its intrusion into children’s privacy by showing them during moments of distress and its failure to ask adults on the spectrum what they want or need for themselves.)

Autism Speaks has no autistic people on its governing board and, in the words of John Elder Robison when he resigned from its Science and Treatment Boards, “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”

So as libraries address the question of service to people on the autism spectrum, I ask that they reconsider quoting from Autism Speaks or in any way describing it as an “advocacy organization.” Instead, give greater prominence to the contributions of autistic people and their allies.