Autism Speaks

Autism Speaks is the largest and most influential organization regarding autism in the United States of America. The autistic community has criticized it for spreading destructive rhetoric, and it has been labeled a hate group by the Autism Women’s Network.[1] Autism Speaks claims responsibility for events such as “Light Up Blue” and “Autism Awareness Month.”

History
Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, thanks in part to Bernie Marcus who donated $25 million to get the organization up and running. The Wrights were inspired by the diagnosis of their grandchild with autism. From the very beginning, their intention was to fight against autism as though it was and is a scourge that has no place in society.

Publications
Autism Speaks has released numerous letters, video advertisements, and other media about its view on autism.

1. Autism Every Day
This was a video published originally in 2006.[2] Its claimed intent was to dispel the idea of the “refrigerator mother,” or a mother who neglected children’s emotional needs. Instead, mothers discussed how hard their children’s autism made it for them.

In the book “Battleground: The Media”, Robin Andersen describes that parents were told not to clean their house before the filming, and that film crews would show up at unexpected times.[3] Parents never had the chance to do their hair or bring in therapists, and cameras rolled as parents struggled to get their children ready for the unexpected filming.[4][5]

One notable moment discussed thoughts of murder-suicide. Alison Tepper Singer, sitting with her autistic daughter Jodie, explains how she considered driving off a bridge to kill herself and Jodie. The only thing that prevented the murder-suicide, she explains, was the idea of her neurotypical child waiting at home.

Four days later, Karen McCarron murdered her autistic daughter, explaining “Maybe I could fix her this way, and in heaven she would be complete.”[6]

2. Ransom Notes
After the debacle of Autism Every Day, Autism Speaks started another campaign intended again to tell the story of Autism this time in another way. Ransom Notes was a press advertisement campaign presented in New York City on billboards, kiosks and construction sites, as well as in Newsweek and New York Magazine.[7] It was produced pro bono by an advertising group with connections to Autism Speaks, despite having the name of Dr Harold Koplewicz attached to it.

The advertisements put Autism over as a condition that “imprisoned” children, and pleaded for help to release the child from said “prison”. This was a fear campaign in every sense of the word. It lasted not even a month before it was shut down by a massive protest heading up by Ari Ne’eman and the Autistic Self Advocacy Network.[7]

3. I Am Autism
The video I Am Autism was released to describe how difficult parents’ lives were. It portrayed autism as a life-destroying demon which parents had to fight. It featured an ominous voice over that claimed to be autism, saying things such as;

  • “I work faster than pediatric AIDs, cancer, and diabetes combined.”
  • “And if you’re happily married, I will make sure that your marriage fails.”
  • “Your money will fall into my hands, and I will bankrupt you for my own self-gain.”
  • “I don’t sleep, so I make sure you don’t either.”
  • “I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.”[8]

Autistic people and their loved ones criticized the video for its fearmongering and misrepresentation of Autism.[9]

4. Call to Action
Suzanne Wright’s “Call to Action” letter continued the portrayal of autism as a disaster. She wrote that “autism moms” lived “moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.” Autistic children were compared to missing children.[10]

This was the last straw for some people, including John Elder Robison[11] (the organization’s first autistic board member) and mother Jess. Both quit. Jess stated “[My daughter] is not lost. She’s right here. And she can hear you. Whether or not you choose to believe that Autistic people can hear you, they can. How do I explain your words to them? To my daughter? […] How do I tell her that her Mama does not see her as a burden and never, ever will? How when you are telling her the opposite?”[12]

5. Call for Unity
An LA Times Op Ed by Steve Silberman (author of bestselling book NeuroTribes) criticized Autism Speaks for failing to listen to autistic people.[13] In return, Autism Speaks issued “A Call for Unity,” which mostly discussed all of Autism Speaks’ achievements (and did not address Silberman’s criticisms).[14][15]

“What the vultures call unity, the giraffes calls getting eaten,” Nick Walker noted. Many autistic people criticized Autism Speaks for only responding once a neurotypical spoke, after autistic people (and some loved ones) had been trying to be heard for 10 years.[16]

Stating that there is not unity means acknowledging that autistic people have perspectives in the first place. Some autistic people took it as a sign of hope that there might be enough division to allow “space at the table” for their concerns.[15]

6. Other Publicity Efforts
Its video ”Neighbors” implied that autistic children could not make friends unless they received compliance therapy to make them act non-autistic.[9]

Autistic people had some hope when the video ”I Want to Say” was released in 2013, believing its title might suggest an acknowledgement of autistic voices and autistic people’s humanity. The rhetoric, however, focused on the “suffering” of autistic people.[17]

Criticism and “Hate Group” Label
John Elder Robison said; “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.”[11] The autistic community is highly critical of Autism Speaks and the messages it sends about autism. Many autistic people and their allies publicly oppose it.[18][19]

1. Nothing About Us Without Us
Autism Speaks did not follow the disability motto “Nothing About Us Without Us”, as none of its board members were autistic. It only had one member on a lower board, John Elder Robinson on the science advisory board. He resigned in November 2013 following Suzanne Wright’s call to action, which he said “says things I would never say to people with autism and cannot in good conscience stand by.”[11]

2. Demonization of Autism
Ari Ne’eman said, “Autism Speaks believes that its bottom line will be helped by portraying autistic people as less than human. This is really damaging if you’re trying to get your child included in school or if you’re an autistic person trying to find a job or get included in society more broadly.”[20] Critics argue that Autism Speaks paints autism as evil. Activists have argued that Autism Speaks’ rhetoric separates children from their autism, allowing the autism to be demonized until autistic people are broken by abuse or put guns to their heads to “kill the bad guy” that was their brain.[21]

This is especially dangerous when done to a population as vulnerable as autistic people, who are at high risk for depression and anxiety. For instance, Sharon Fuentes quoted her son; “Mom, do I make you ill?”[22] Autism Speaks has been criticized heavily for dehumanizing autistic people.[23] Co-founder Suzanne Wright explains, “This disorder has taken our children away. It’s time to get them back.”[24]

Autistic advocates such as Amy Sequenzia argue that rhetoric surrounding autism should avoid labels like “tragedy” and “devastating,”[25] instead presuming competence[26] and treating autistic people like capable and worthwhile human beings.

3. Judge Rotenburg Center Partnership
Autism Speaks is allied with the Judge Rotenberg Center. Its founder Matthew Israel used techniques such as “slaps, forced inhalation of ammonia, food deprivation, sleep deprivation, prolonged restraint, deep-muscle pinches intended to inflict maximum pain, and long-term seclusion”[27] and then added electroshock therapy, leading to the deaths of at least six children.[28] The Judge Rotenberg Center’s practices have been declared torture by the United Nations Special Rapporteur on Torture.[29][30]

Autistic People Speaking
Autistic people have spoken up against Autism Speaks since it was founded. They founded groups such as ASAN and organized events such as Autism Acceptance Month. The following are examples of organizations run by autistic people:

Change of direction?
When co-founder Suzanne Wright died on July 29, 2016,[31] subsequent events combined with the May 2015 resignation of the other co-founder Bob Wright as chairman led to a change in the mission statement from Autism Speaks. This was noticed by Jonathan Mitchell[32] and other outlets.[33][34][35] Phil Gluyas while responding to Mitchell’s comment pointed out that the language of the new mission statement was “suspicious” including the word “solutions”.[36]

References
[1] Autism Women’s Network: Is Autism Speaks a Hate Group?
[2] Autism Every Day
[3] Andersen, Robin (2008). “Battleground: The Media” Westport, Connecticut: Greenwood Press. pp. 127–128. ISBN 978-0-313-34168-7. LCCN 2007032454.OCLC 230095012.
[4] Left Brain, Right Brain: Lauren Thierry, Autism Every Day, Why Lie?
[5] MOM NOS: An alternate view of Autism Every Day
[6] Fox News: Illinois Mother Says She Killed Autistic Daughter to ‘Fix’ Her (archived)
[7] The “Ransom Notes” Affair: When the Neurodiversity Movement Came of Age
[8] I am Autism transcript
[9] Lydia Brown: Co-Opting the Movement
[10] Forbes: Why Autism Speaks Doesn’t Speak For Me
[11] John Elder Robison: I resign my roles at Autism Speaks
[12] A Diary of a Mom: no more – a letter to Suzanne Wright]
[13] Los Angeles Times: Op Ed – Autism Speaks needs to do a lot more listening
[14] Autism Speaks: A call for unity
[15] Thinking Person’s Guide to Autism: Liz Feld and Autism Speaks: No, Really, You Need to Listen
[16] The Art of Autism: Pressure is On Autism Speaks with Los Angeles Times Op Ed
[17] Autism Women’s Network: Not Good Enough, Autism Speaks
[18] ASAN: 2014 Joint Letter to the Sponsors of Autism Speaks
[19] The Caffeinated Autistic: New Autism Speaks Masterpost (Updated 4/4/17)
[20] Disability Scoop: Groups Outraged Over Video Released By Autism Speaks
[21] A Diary of a Mom: What I believe
[22] Mama’s Turn Now: Dear Ms. Wright, Autism Speaks and any others out there who may read this…
[23] Small But Kinda Mighty: Why are so many people mad at Autism Speaks right now?
[24] Suzanne Wright: A Call to Action
[25] Ollibean: Autism Speaks Time to listen
[26] Emma’s Hope Book: “Presume Competence” – What Does That Mean Exactly?
[27] Lydia Brown: An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center
[28] Lydia Brown: Judge Rotenberg Center Resources
[29] Forbes: Autism Shock Therapy Practiced In US Is Torture, Says UN Official
[30] ASAN Statement On JRC At Association for Behavior Analysis International Conference
[31] CNN: Suzanne Wright, autism advocate, dies at 69
[32] Autism Gadfly: Autism Speaks’ October Surprise: They no longer want a cure?
[33] Special World: Autism Speaks drops search for ‘cure’ from its mission statement
[34] Special Needs Digest: Autism Speaks Updates Their Mission Statement. “Cure” is Now Gone (archived)
[35] Welcome to my inner world: Autism Speaks Changes Mission – No Longer Seeking Cure (archived)
[36] Mitchell’s Gadfly: Has Autism Speaks seen sense?