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Autism Speaks

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Autism Speaks (known in the UK as Autistica[1]) 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."[2] California State University, Northridge professor of philosophy Jacob Hale, who has Asperger's syndrome, has described Autism Speaks as "incredibly condescending and parentalistic."[3]

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.[4]

In 2016 it elected two autistic board members, Valerie Paradiz and Stephen Mark Shore, and its horrible co-founder Suzanne Wright died.[5] Its mission statement was revised to "increasing understanding and acceptance of autism spectrum disorder" rather than seeking a cure.[6] 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.

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]

Rhetoric and other vileness[edit]

They were saying that I had to be defeated, cured from a terrible condition, exterminated. They never paused to think that I, and other autistics, did not really want to be discarded as undesirable. And it is scary when people keep saying that we don’t deserve to be here.
—Amy Sequenzia, a nonspeaking autistic writer[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.

[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[13]

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.[14]

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[15][16] 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.[17] The video seems to equate divorce and public embarrassment with having an autistic child.

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.[18] The producers, not done being assholes, said these feelings were not unusual. The staff member in question, Alison Singer, has since distanced herself from these comments, left Autism Speaks, and founded an organization promoting actual scientific research.[19]

Judge Rotenberg Educational Center[edit]

In addition, Autism Speaks allowed the Judge Rotenberg Educational CenterWikipedia's W.svg 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 biker gang. When people pointed this out on their Facebook page, they responded that they were "looking into it."[20][21]

The "charitable" organization[edit]

Autism Speaks – lighting it up blue and walking away with the green
—Debra Muzikar[22]

Autism Speaks is heavily into the charity as business model, on a level comparable to Susan G. Komen For The Cure.[23]

As of late 2017, Charity Navigator rates its financals with 1 out of 4 stars, giving the organization barely 2 out of 4 stars overall.[24]

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.[25] 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.[26][27]

Autism Speaks and Neurodiversity[edit]

In 2010, WrongPlanet started to accept money from Autism Speaks for its Autism Talk TV series, despite claiming that "Asperger's is not a disease". Mitchell criticized both parties as mutually working against their stated goals. Interestingly enough, Autism Speaks also gave Laurent Mottron, a neurodiversity researcher, half a million dollars.

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)[28] - motto "Nothing About Us Without Us" - instead.

See also[edit]

External links[edit]

References[edit]

  1. https://www.autismspeaks.org/about-us/press-releases/autism-speaks-uk-announces-change-name-autistica
  2. I’m Autistic, And Believe Me, It’s A Lot Better Than Measles
  3. Zide, Jeffrey. "Autism Speaks does not represent the voices of autistic people." The Sundial. Cal State Northridge. April 23, 2012.
  4. http://nosmag.org/big-talk-little-change-for-autism-speaks-research-agenda/
  5. Autism Speaks welcomes three new board members
  6. https://www.disabilityscoop.com/2016/10/14/autism-speaks-no-longer-cure/22884/
  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
  11. Vaccines and Autism, Autism Speaks
  12. https://www.thinkinclusive.us/why-autism-speaks-hurts-us/
  13. https://www.autismspectrumexplained.com/our-blog/i-too-my-autism-speaks-story
  14. Autistics, Autism Awareness Campaigns, and the Mental Health Care System
  15. Why Autism Speaks Doesn't Speak For Me, Forbes
  16. https://www.psychologytoday.com/us/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle
  17. I Am Autism, YouTube
  18. Speaking Out About “Autism Every Day”
  19. http://www.autismsciencefoundation.org/
  20. Autism Speaks caught partnering with white supremacists
  21. Autism Speaks: How long does it take to look into it?
  22. https://the-art-of-autism.com/autistic-people-parents-and-advocates-speak-about-autism-speaks/
  23. Why I am Against Autism Speaks (and you should be, too)
  24. Charity Navigator - Autism Speaks
  25. Before you donate to Autism Speaks, Consider the facts, Autistic Advocacy
  26. https://autisticmama.com/do-not-support-autism-speaks/
  27. 11 Reasons Why You Shouldn't Support Autism Speaks
  28. http://autisticadvocacy.org/