Autistic Activist Amy Sequenza to Pope Francis: “Autism Speaks Does Not Speak for Me”

by Memoirs Of A Dead Woman

Autistic activist Amy Sequenzia wrote an open letter to Pope Francis. You need to read it. Like, yesterday.

Why? Because in November 2014, the Vatican hosted a three-day conference on autism. Present and speaking at that conference was Suzanne Wright, co-founder of Autism Speaks.

Her presence at the conference was quite unfortunate. Scratch that — it’s downright deplorable that she, along with her organization which continually stigmatizes autistic people and does not listen to autistic adult voices despite repeated efforts to reach out to them — gained an audience with His Holiness.

If you’re new to this — i.e. if you’re unfamiliar with the number of issues that autistic adults have with Autism Speaks below are a few reasons why autistic folk (myself included) have a problem with them. In short, Autism Speaks has:

1. in its advertising, repeatedly relied on “offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society”;
2. has “supporting dangerous fringe movements that threaten the lives and safety of both the autism community and the general public“;
3. in its fundraising, repeatedly diverted money “away from local communities“, resulting in less funding for “critical investments in services and supports needed by autistic people and our families”;
4. in its own budgets has devoted little of its research money to the “the areas of most concern to autistic people and our families–services and supports, particularly for autistics reaching adulthood and aging out of the school system”; and,
5. in its senior leadership “failed to include a single autistic person” — and the only autistic advisory board member, John Elder Robison, resigned after attempting to reform the organization from inside out and being met with resistance.

(Note: all quotes in the above list are from the “2014 Joint Letter to the Sponsors of Autism Speaks” by the Autistic Self Advocacy Network.)

Research scientist, university professor, and blogger Emily Willingham also weighed in about why Autism Speaks’ audience with the Pope is a problem. Also, check out this transcript of Wright’s speech at Unstrange Mind. I also recommend the links below as further reading to understand the problem:

• “Why I Protest Autism Speaks” (my original post at Raven’s Wing Poetry)
• “Autism Speaks Hurts Autistic People” (by Lei Wiley-Mydske at Autism Speaks Hurts. Real People Speaking.)
• “Why I Am Against Autism Speaks (and You Should Be, Too)” (The Caffeinated Autistic)
• “An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center” (Autistic Hoya)
• “Why Autism Speaks Doesn’t Speak for Me” (Emily Willingham at Forbes)
• “I Resign My Roles at Autism Speaks” (Look Me in the Eye)