Autism Speaks

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Autism Speaks is a vile and highly controversial autism “advocacy” organization founded by Bob and Suzanne Wright after their grandson was diagnosed with the disorder. The organization has garnered huge criticism for their vilification and dehumanisation of autistic people, their treatment of autism as a curable disease and their past flirtation with anti-vaxxers. They operate on the principles of age-old anti-modernists. Essentially, they fail to believe mental conditions are natural.

Actual autistic people generally despise them. One described Autism Speaks as "a charity for neurotypical people who have been afflicted with the horror of having autistic people in their lives."[1] California State University, Northridge professor of philosophy Jacob Hale, who has Asperger's syndrome, has described Autism Speaks as "incredibly condescending and parentalistic."[2]

Its choice to focus on the cause of autism no longer aligns with the priorities of many parents and loved ones of autistic people, many of whom are opposed to preventing autism or trying to train children to act non-autistic, and want autism organizations to focus on acceptance and support.[3]

In 2016 it elected two autistic board members, Valerie Paradiz and Stephen Mark Shore, and its horrible co-founder Suzanne Wright died.[4] Its mission statement was revised to "increasing understanding and acceptance of autism spectrum disorder" rather than seeking a cure.[5] Some see this as a sign of improvement, while others see the changes as superficial and doubt that Autism Speaks will start treating autistic people like actual human beings.[6]

Vaccine denialism[edit]

Autism Speaks used to hold the view that immunizing children put them at risk of autism and committed a great deal of funding to prove it.[7] It continued to spend money on researching a possible connection despite evidence to the contrary, resulting in several resignations from frustrated board members.[8][9]

When anti-vaccination beliefs suddenly became unpopular, Autism Speaks quickly changed its tune and urged parents to vaccinate their children.[10] However, its spokespeople did not comment on whether it would continue spending money on research into vaccines.[11]

Vile rhetoric[edit]

Destroy the autism at whatever cost and then you'll free the real human being, right?
YOU SHOULD NOT HAVE BRED! We do not need any more people with autism. What is wrong with you?
—Autism Speaks worker to an autistic parent. In front of the kid too.[12]

Autism Speaks uses shocking, militant language to urge people to donate and "fight" autism. Their rhetoric consistently paints autism as the enemy and parents as either heroes or tragic martyrs.

It isn't above telling a few lies, either. Autism Speaks has long claimed that parents of autistic kids have an 80% divorce rate.[13] (They don't. There's no significant difference in divorce rates between families with autistic and non-autistic kids.[14]) Its information on the prevalence of deadly diseases, which it likes to compare to autism, isn't always fact-based.[15]

Autistic people who speak out against Autism Speaks may be dismissed with the no true Scotsman fallacy: real autism causes suffering, so if you aren't suffering and don't hate your life, then you aren't truly autistic.[16][17]

Effects on autistic people[edit]

[My autistic sister] sobbed for hours, having been told that she was the source of all our parent’s woes – including the very divorce she’d been seeking help for.
—Creigh Farinas[18]

This rhetoric can hurt autistic people, who may already suffer from issues with anxiety, depression, and self esteem problems. One survey found that negative "autism awareness" campaigns worsen mental health issues for a majority of autistic people.[19]

Ads and videos[edit]

While the most egregious examples are in the past as Autism Speaks has become more savvy, many of its videos contain negative messaging (overt or subtle).[20]

The "I Am Autism" video[edit]

In 2009, Autism Speaks released a sinister and inflammatory video which personified autism as some sort of living demon-figure that can ruin marriages, embarrass family members and spread like cancer. The video, directed by much-respected film-maker Alfonso Cuarón, displays numerous home videos of children in a way reminiscent of how serial killer Francis Dolarhyde chooses his victims in Red Dragon. The video drew ire from autistic people and their families[21][22] for its portrayal of the condition as one where the person who has it is totally incapable of rational thought or taking care of themselves.[23] The video seems to equate divorce and public embarrassment with having an autistic child.

Not to mention the logical fallacy of comparing autism to "pediatric AIDS, cancer, and diabetes combined"[24] when autism is not fatal.

The "Autism Every Day" video[edit]

Autism Speaks sponsored the short film Autism Every Day, in which a staff member says in the presence of her daughter, that when faced with the prospect of inadequate school, she contemplated driving her car off a bridge with her child inside.[25] The producers, not done being assholes, said these feelings were not unusual.

The staff member in the video, Alison Singer, has since distanced herself from these comments, left Autism Speaks, and founded an organization promoting actual scientific research.[26]

Autism Speaks has never apologized for this. It has, however, stated that parents kill their kids because they lack services to deal with their children's "challenging behavior,"[27] and it's not surprising in general if a parent "breaks".[28] It also failed to speak out when Harry Slatkin, the husband of a board member stated in an interview that sometimes he wished his son would fall into the pond and die.[29][30]

Eye contact ad[edit]

One Autism Speaks mall ad features a young girl. A 3D camera captures viewers' movements, and the girl on the screen moves to avoid eye contact.[31] The ad is supposed to help people empathize with how "frustrating" it might be for a parent whose child won't meet their eyes.[32]

Here's the problem: many autistic people find eye contact uncomfortable or frightening,[33][34] and they prefer to avoid eye contact in order to have a pleasant conversation. By encouraging people to make eye contact with the virtual girl, Autism Speaks is teaching people to persistently try to violate autistic people's boundaries. Forcing or training them to make eye contact would do more harm than good.[35][36]

The "charitable" organization[edit]

Lots of money on stigmatizing ads, little money for families.
Autism Speaks – lighting it up blue and walking away with the green
—Debra Muzikar[37]

Autism Speaks is heavily into the charity as business model, on a level comparable to Susan G. Komen For The Cure.[38]

As of late 2017, Charity Navigator rates its financials with 1 out of 4 stars, giving the organization barely 2 out of 4 stars overall.[39]

In 2010 Autism Speaks dedicated 44% of its funding for research and a cure, despite the extreme unlikelihood of "curing" different brain development. In the same year, only 4% of their budget went towards actually helping families of autistic people.[40] The organization also funds research for genetics, which would likely result in a pre-natal test to allow potential families to test for autism and choose to abort if they deemed the fetus undesirable.[41][42]

Legal issues[edit]

Autism Speaks faced legal action for disability discrimination in 2012. The autism organization rescinded a job offer because the prospective employee wanted flexibility so she could care for her autistic son when he came home from school early on Wednesdays. Even though the boy's grandmother offered to babysit, Autism Speaks didn't want to deal with making accommodations for her, so it rescinded the offer.[43][44]

There have also been issues with Autism Speaks quoting an autistic writer, failing to remove the quote when she asked, and then white-texting it in order to remain higher on search engine results.[45]

Autism Speaks also threatened legal action against an autistic 14-year-old girl named Kelly for creating the parody website "NT Speaks," claiming that she repay them the $90,000 they had supposedly lost because of her.[46] They dropped the suit when they said they discovered she was a child,[47] since suing children is illegal.

The issue was summarized on Fark as "Autism Speaks, a charity that claims to speak for autistic people sues 14-year-old autistic kid when she starts a parody website about autistic people being able to speak for themselves."[48]

Autism Speaks has also chosen not to take action to prevent child abuse, calling it "too political."[49]

Evil BFFs[edit]

Judge Rotenberg Educational Center[edit]

In addition, Autism Speaks allowed the Judge Rotenberg Educational Center to be a exhibitor at their resource fair at their Walk Now for Autism Speaks event. Anyone with any form of ethics can see why this would be highly objectionable, as the center is infamous for its abuses, particularly the use of electric shock devices as negative incentive for behaviour modification in children (which was even controversial when Ole Ivar LovaasWikipedia's W.svg first experimented with using it on autistic people).

White supremacist ties[edit]

Autism Speaks has partnered with the Soldiers of Odin, a white supremacist group. When people pointed this out on their Facebook page, they responded that they were "looking into it."[50][51]

Confusing support for neurodiversity groups[edit]

Jonathan Mitchell pointed out that Autism Speaks has given money to WrongPlanet (which claims that Aspergers is not a disease) and researcher Laurent Mottron (who believes autism can't and shouldn't be cured).[52][53]

Sheep's clothing[edit]

Autism Speaks has tried to rebrand itself so it can profit off the growing culture of acceptance and neurodiversity. It has started using bright colors and optimistic statements to lure people in and convince them it's something positive.

Autism Speaks removed the word "cure" from its mission statement in 2016, replacing it with "solutions."[54] Dr. Stephen Shore, one of its 2 autistic board members (out of 31)[55] felt it was because Autism Speaks actually cared about empowering autistic people.[56] Other people were skeptical.[57] Maxfield Sparrow noted that Autism Speaks is still pouring money into genetic research and has yet to do anything beyond lip service.[58]

After being criticized for spending so little money on family services, Autism Speaks renamed its categories so that "family services, awareness, and advocacy" became a category (meaning that nobody can see how much money is spent on family services anymore).[58]

Autism Speaks has gotten involved with Sesame Street, using the Muppet named Julia to advertise its stigmatizing "resources."

In early 2020, Autism Speaks unveiled a new logo, which was the same thing but with a few rainbow colors. Autistics weren't impressed.[59] "Appropriating the neurodiversity movement's spectrum iconography is a slap in the face, especially since that imagery is used to differentiate ourselves from Autism Speaks," said autistic writer and advocate Steve Asbell.[60]

It's worth noting that despite all these superficial efforts, Autism Speaks hasn't apologized for anything so far, and they continue to share the same stigmatizing resources (like their 100 Day Kit).

What to do about Autism Speaks[edit]

Approach organisations fooled into working with Autism Speaks, and explain that Autism Speaks is a group that hurts autistic people instead of helping. Then, suggest they work with more positive groups, like the Autism Self Advocacy Network (ASAN)[61] - motto "Nothing About Us Without Us" - instead.

See also[edit]

External links[edit]

References[edit]

  1. I’m Autistic, And Believe Me, It’s A Lot Better Than Measles
  2. Zide, Jeffrey. "Autism Speaks does not represent the voices of autistic people." The Sundial. Cal State Northridge. April 23, 2012.
  3. Big Talk, Little Actual Change for Autism Speaks' Research Agenda - NOS Magazine
  4. Autism Speaks welcomes three new board members
  5. https://www.disabilityscoop.com/2016/10/14/autism-speaks-no-longer-cure/22884/
  6. Autism Speaks Hasn’t Really Changed Anything
  7. “Autism Speaks”- but Should Everyone Listen?
  8. Resignations Highlight Disagreement On Vaccines in Autism Group
  9. Charity chief quits over autism row
  10. Autism Speaks Alters Position On Vaccines - Disability Scoop
  11. Vaccines and Autism, Autism Speaks
  12. Why My Dealings with Autism Speaks is Personal - Fierce Autie
  13. [1]
  14. 80 percent autism-divorce rate debunked in first-of-its kind scientific study - Science Daily
  15. Lies, Statistics, and Autism Speaks - Welcomed Intruder
  16. Real Consequences - Ollibean
  17. I'm Not "High-Functioning" - Autistic Dreams
  18. https://www.autismspectrumexplained.com/our-blog/i-too-my-autism-speaks-story
  19. Autistics, Autism Awareness Campaigns, and the Mental Health Care System
  20. Not Good Enough, Autism Speaks - Autism Women's Network
  21. Why Autism Speaks Doesn't Speak For Me, Forbes
  22. https://www.psychologytoday.com/us/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle
  23. I Am Autism, YouTube
  24. Horrific Autism Speaks “I am Autism” ad transcript
  25. Speaking Out About “Autism Every Day”
  26. http://www.autismsciencefoundation.org/
  27. Desperate Act: Mom Accused of Trying to Kill Autistic Daughter - NBC News
  28. Autism Speaks and Signal Boosting - Emma's Hope Book
  29. Autism's Angels (PDF of magazine)
  30. "Autism's Angels" and a "hidden, dark thought" - Autism Vox, via Wayback Machine
  31. Eye Contact Installation
  32. No Missing Piece: Why Autism Speaks is Dangerous - Medium
  33. Should We Insist on Eye Contact with People who have Autism Spectrum Disorders - Indiana Resource Center for Autism (spoiler alert: definitely not)
  34. For Those With Autism, Eye Contact Isn't Just Weird, It's Distressing - Science Alert (Proving the point, the picture at the top of this article scared one of our autistic editors)
  35. Why Eye Contact Is So Distressing For People With Autism - Huffington Post
  36. ABA - Maxfield Sparrow (contains very disturbing descriptions of child abuse)
  37. https://the-art-of-autism.com/autistic-people-parents-and-advocates-speak-about-autism-speaks/
  38. Why I am Against Autism Speaks (and you should be, too)
  39. Charity Navigator - Autism Speaks
  40. Before you donate to Autism Speaks, Consider the facts, Autistic Advocacy
  41. https://autisticmama.com/do-not-support-autism-speaks/
  42. 11 Reasons Why You Shouldn't Support Autism Speaks
  43. Autism Mother Sues Autism Speaks For Disability Discrimination - Care 2
  44. Mom sues Autism Speaks after job offer is rescinded - WJLA
  45. Autism Speaks Are Work-Stealing, White-Texting Liars. - Alyssa Hillary
  46. Autism Speaks Silences Autistic Child - Whose Planet Is It Anyway?
  47. Autism Speaks attempts to sue autistic child - Autistext
  48. Autism Speaks, a charity that claims... - Fark
  49. Stopping Child Abuse "Too Political" for Autism Speaks - via Wayback Machine
  50. Autism Speaks caught partnering with white supremacists
  51. Autism Speaks: How long does it take to look into it?
  52. http://autismgadfly.blogspot.com/2010/08/alex-plank-sycophantic-saga-continues.html
  53. http://autismgadfly.blogspot.fr/2009/06/why-would-autism-speaks-give-laurent.html
  54. The White House Turned Blue for "Autism Awareness." That's Actually Bad for Autistic People - Mother Jones
  55. Editorial: The editorial board stands against Autism Speaks Eagle Angle
  56. Why Autism Speaks Dropped The Word 'Cure' From Its Mission Statement - Huffington Post
  57. Autism Speaks Revamps Its Mission Statement - Autism Speaks
  58. 58.0 58.1 Autism Speaks Hasn't Really Changed Anything - Unstrange Mind
  59. Autistics don't love Autism Speaks' new logo (Twitter moment)
  60. Tweet by Steve Asbell
  61. http://autisticadvocacy.org/