Autism Speaks

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, and are stuck in the 60s. Essentially, they fail to believe mental conditions are natural.

Needles are scary
Anti-vaccination
movement
Pricks against pricks
v - t - e

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, ironically the same year 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] However, most people are seeing the latter.

Questionable relationship with the truth

Vaccine denialism

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] Its Strategic Plan for Science for the years 2013-2017 included spending money on looking for a link between vaccines and autism.[10]

It promoted anti-vax celebrities including Jenny McCarthy, Doug Flutie, and celebrity board member Holly Robinson Peete; all these celebrities claim that vaccines played a role in their children being autistic.[10]

When anti-vaccination beliefs became unpopular during a measles outbreak, Autism Speaks changed its tune and urged parents to vaccinate their children.[11] However, its spokespeople did not comment on whether it would continue spending money on research into vaccines.[12]

Other unscientific claims

Autism Speaks has long claimed that autism frequently causes divorce,[13] likely spreading the unscientific myth that 80% of families with autistic kids divorce.[14][15] (They don't. There's no significant difference in divorce rates between families with autistic and non-autistic kids.[16])

Autism Speaks has also promoted pseudoscientific "autism diets"[17]. In 2011, it drew criticism for promoting Floortime[note 1] despite there being little or no scientific evidence for it at the time.[18] It has also been called out for doing nothing to prevent horrifying "autism therapy" scams such as Miracle Mineral Supplement and chelation therapy from hurting autistic children.[19]

Its information on the prevalence of deadly diseases, which it likes to compare to autism, isn't always fact-based.[20]

Vile rhetoric
“”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.[21]

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. This is an archaic view that should have been dismissed as bull crap before the mid-70s.

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.[22][23]

Effects on autistic people
“”[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[24]

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.[25]

Ads and videos

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).[26]

The "I Am Autism" video

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[27][28] 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.[29] 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"[30] when autism is not fatal.

The "Autism Every Day" video

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.[31] 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.[32]

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,"[33] and it's not surprising in general if a parent "breaks".[34] 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.[35][36]

Eye contact ad

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.[37] The ad is supposed to help people empathize with how "frustrating" it might be for a parent whose child won't meet their eyes, instead of empathizing with the poor autistic child who gets forced by adults who are up to 3 times as big as them, to look them in the eyes or get hit, sprayed, or forced to eat hot chilli sauce.[38]

Here's the problem: many autistic people find eye contact uncomfortable or frightening,[39][40] 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.[41][42]

The "charitable" organization
“”Autism Speaks – lighting it up blue and walking away with the green
—Debra Muzikar[43]

Autism Speaks is heavily into the charity as business model, on a level comparable to Susan G. Komen For The Cure.[44]

As of 2020, Charity Navigator rates its financials with 2 out of 4 stars, giving the organization 3 out of 4 stars overall.[45]

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.[46] 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.[47][48]

A petition called for a fraud investigation after people noticed issues with Autism Speaks' financials. The organization claimed to have funded "over $62 million" in Arkansas, Arizona, Delaware, Hawaii, Idaho, Indiana, Louisiana, Mississippi, Montana, Nevada, North Dakota, and Vermont (each); after a woman named Kimberly Steiner reported that at least one of these numbers was untrue, the organization pulled these claims without notifying stakeholders.[49]

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.[50][51]

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.[52]

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.[53] They dropped the suit when they said they discovered she was a child,[54] 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."[55]

Autism Speaks has also chosen not to take action to prevent child abuse, calling it "too political."[56]

Evil BFFs

Judge Rotenberg Educational Center

In addition, Autism Speaks allowed the Judge Rotenberg Educational Center to be an 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 LovaasFile:Wikipedia's W.svg first experimented with using it on autistic people).

White supremacist ties

Predictably for an organization steeped in eugenecist thought, 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."[57][58]

Confusing support for neurodiversity groups

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).[59][60]

Sheep's clothing

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."[61] Dr. Stephen Shore, one of its 2 autistic board members (out of 31)[62] felt it was because Autism Speaks actually cared about empowering autistic people.[63] Other people were skeptical.[64] Maxfield Sparrow noted that Autism Speaks is still pouring money into genetic research and has yet to do anything beyond lip service.[65]

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).[65]

Autism Speaks has gotten involved with Sesame Street, using the Muppet character Julia to advertise its stigmatizing "resources."[66] Fans of the series have concluded that Sesame Workshop (who worked with the Autistic Self Advocacy Network (mentioned below) in developing Julia[67]) were essentially forced into working with Autism Speaks thanks to AS being the go-to Autism charity in Hollywood.

In early 2020, Autism Speaks unveiled a new logo, which was the same thing but with a few rainbow colors. Autistics weren't impressed.[68] "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.[69]

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

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 Autistic Self Advocacy Network (ASAN)[70] - motto "Nothing About Us Without Us" - instead.

gollark: Do not reveal these secrets.
gollark: The question is how much the rules enforce it.
gollark: Well, we sort of have that.
gollark: Interesting question, that.
gollark: I don't actually know how strong switchcraft property rights are.

See also

Notes
  1. A 2015 literature review said that while Floortime may potentially work, the research isn't strong enough yet

References
  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 Too Late on Vaccines, Shot of Prevention
  11. Autism Speaks Alters Position On Vaccines - Disability Scoop
  12. Vaccines and Autism, Autism Speaks
  13. "I Am Autism" transcript
  15. No Real Difference In Divorce Rate For Families With Children On The Autism Spectrum, Science 20
  16. 80 percent autism-divorce rate debunked in first-of-its kind scientific study - Science Daily
  17. ASAN Has Ended Partnership With Sesame Street, ASAN
  18. Autism Speaks should pause to listen, for just a moment, Autism Pundit
  19. “Everyone Can Do Something to Stop Autism Pseudoscience”: Interview with Melissa Eaton, Noncompliant
  20. Lies, Statistics, and Autism Speaks - Welcomed Intruder
  21. Why My Dealings with Autism Speaks is Personal - Fierce Autie
  22. Real Consequences - Ollibean
  23. I'm Not "High-Functioning" - Autistic Dreams
  24. https://www.autismspectrumexplained.com/our-blog/i-too-my-autism-speaks-story
  25. Autistics, Autism Awareness Campaigns, and the Mental Health Care System
  26. Not Good Enough, Autism Speaks - Autism Women's Network
  27. Why Autism Speaks Doesn't Speak For Me, Forbes
  28. https://www.psychologytoday.com/us/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle
  29. I Am Autism, YouTube
  30. Horrific Autism Speaks “I am Autism” ad transcript
  31. Speaking Out About “Autism Every Day”
  32. http://www.autismsciencefoundation.org/
  33. Desperate Act: Mom Accused of Trying to Kill Autistic Daughter - NBC News
  34. Autism Speaks and Signal Boosting - Emma's Hope Book
  35. Autism's Angels (PDF of magazine)
  36. "Autism's Angels" and a "hidden, dark thought" - Autism Vox, via Wayback Machine
  37. Eye Contact Installation
  38. No Missing Piece: Why Autism Speaks is Dangerous - Medium
  39. Should We Insist on Eye Contact with People who have Autism Spectrum Disorders - Indiana Resource Center for Autism (spoiler alert: definitely not)
  40. 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)
  41. Why Eye Contact Is So Distressing For People With Autism - Huffington Post
  42. ABA - Maxfield Sparrow (contains very disturbing descriptions of child abuse)
  43. https://the-art-of-autism.com/autistic-people-parents-and-advocates-speak-about-autism-speaks/
  44. Why I am Against Autism Speaks (and you should be, too)
  45. Charity Navigator - Autism Speaks
  46. Before you donate to Autism Speaks, Consider the facts, Autistic Advocacy
  47. https://autisticmama.com/do-not-support-autism-speaks/
  48. 11 Reasons Why You Shouldn't Support Autism Speaks
  49. Investigate Autism Speaks for unlawful & unethical activity, Change.org
  50. Autism Mother Sues Autism Speaks For Disability Discrimination - Care 2
  51. Mom sues Autism Speaks after job offer is rescinded - WJLA
  52. Autism Speaks Are Work-Stealing, White-Texting Liars. - Alyssa Hillary
  53. Autism Speaks Silences Autistic Child - Whose Planet Is It Anyway?
  54. Autism Speaks attempts to sue autistic child - Autistext
  55. Autism Speaks, a charity that claims... - Fark
  56. Stopping Child Abuse "Too Political" for Autism Speaks - via Wayback Machine
  57. Autism Speaks caught partnering with white supremacists
  58. Autism Speaks: How long does it take to look into it?
  59. http://autismgadfly.blogspot.com/2010/08/alex-plank-sycophantic-saga-continues.html
  60. http://autismgadfly.blogspot.fr/2009/06/why-would-autism-speaks-give-laurent.html
  61. The White House Turned Blue for "Autism Awareness." That's Actually Bad for Autistic People - Mother Jones
  62. Editorial: The editorial board stands against Autism Speaks Eagle Angle
  63. Why Autism Speaks Dropped The Word 'Cure' From Its Mission Statement - Huffington Post
  64. Autism Speaks Revamps Its Mission Statement - Autism Speaks
  65. Autism Speaks Hasn't Really Changed Anything - Unstrange Mind
  66. "Sesame Street's autistic muppet, Julia, was a huge success-why some of her developers are now cutting ties." - Fast Company
  67. "'Sesame Street' Unveils Character With Autism" - Disability Scoop
  68. Autistics don't love Autism Speaks' new logo (Twitter moment)
  69. Tweet by Steve Asbell
  70. http://autisticadvocacy.org/
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