Why Don’t We Support Autism Speaks?

Image Description: Pie chart in various colors showing Autism Speaks’ 2013 expenses with 43% going to Advertising & Donated Media; 19% to Salaries, Benefits, and Payroll Tax; 13% going to Science Grants Awards; 21% to “Everything Else”; 4% to Family Services Grants & Awards

Autism Speaks is the largest autism non profit in the United States. In 2012, they raised over $58 million (source: Autism Speaks website). Unfortunately, very little of the funds raised by Autism Speaks actually go towards helping Autistic people and their families. Only 4% of the  money raised is directed towards family services and supports! Where does the rest go? Well, 5% goes towards “administrative costs and salaries”. That’s more than is spent on actually helping Autistic people. The bulk of the funds raised by individuals for Autism Speaks go toward awareness and advertising campaigns, fundraising, and research.

http://autisticadvocacy.org/wp-content/uploads/2014/09/AutismSpeaksFlyer2014.pdf 

http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=12720#.Up9eUNk7pkR

Awareness and advertising campaigns, like the recent “Autism Speaks to Washington” summit, consistently attempt to speak for Autistic people without our input. Other “awareness” campaigns by Autism Speaks have portrayed Autistic people as burdens, as hopeless, as ruining families and marriages, as tragic and voiceless.

On their “I Am Autism” campaign:

 http://www.disabled-world.com/health/neurology/autism/autism-speaks-video.php

On their “I Want to Say” video:

http://www.autismwomensnetwork.org/article/not-good-enough-autism-speaks

On their promotional documentary “Autism Every Day”:

http://thautcast.com/drupal5/content/autism-every-day-teaches-people-nonverbal-means-no-feelings

Their most recent “Autism Speaks to Washington” campaign called for a national policy on autism without a single Autistic voice at the table. Autism Speaks co-founder, Suzanne Wright wrote of autism as a “crisis”. She wrote that our children were “missing” (ignoring Autistic adults), she wrote that our families were “not living”. We were merely “existing”. She used words like “despair” and “fear” to describe Autistic people and our families. In response to this, Autistic people, parents and allies had this to say:

http://thisisautismflashblog.blogspot.com/

We are opposed to organizations that would attempt to speak for Autistic people without their input.  We are opposed to organizations that use fear-mongering to raise money at the expense of the dignity and personhood of Autistic people. We are opposed to organizations that ask families and individuals to raise money for their salaries, take money out of our communities and in turn give little back for appropriate supports and services. We are opposed to organizations that prioritize an unwanted and unneeded “cure” over acceptance, love, and respect for Autistic neurology.

For these and many other reasons, we at PACLA do not support Autism Speaks.

We support Autistic people. 

 We support acceptance.

For more on why Autism Speaks is NOT an organization that helps Autistic people, you can follow these links:

http://www.autistichoya.com/search/label/Autism%20Speaks

http://yesthattoo.blogspot.com/search/label/Problem%20with%20Autism%20Speaks

http://amazingadventuresautism.blogspot.com.au/2013/04/what-does-awareness-get-us.html

http://timetolisten.blogspot.com/search?q=autism+speaks

https://sites.google.com/site/notautismspeaks/home

http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

https://www.facebook.com/autisticpartygiraffe/

This is just a small sample of the problems that the Autistic community has with Autism Speaks. They do not help Autistic people. They actively do harm to our community. They tell us that it’s “time to listen” while refusing to hear Autistic people. Until Autism Speaks can begin to undo the damage they have caused and make genuine efforts to work collaboratively with Autistic people, we can not and will not support them.