Talk:Autism Speaks/Controversy links

This is a collection of links discussing various controversies involving Autism Speaks. While most of them are not WP:RS in themselves, they may be useful to identify topics to discuss, and/or point to RS's that can be included in the article. Further additions are appreciated. JesseW, the juggling janitor 21:57, 9 December 2012 (UTC)

Beyond adding more links (which is helpful), it would also be useful to add summaries of each entry, to facilitate picking out particular posts to answer particular questions, or that are best suited for particular audiences. JesseW, the juggling janitor 19:56, 31 March 2013 (UTC)

Autism Speaks to Washington press release

http://www.autism-society.org/news/autism-society-response.html -- Autism Society of America's response to the press release — Preceding unsigned comment added by ASchedulingError (talk • contribs) 18:29, 16 November 2013 (UTC)[reply]
http://blog.thearc.org/2013/11/16/open-letter-suzanne-wright-co-founder-autism-speaks/ -- open letter from the CEO of the ARC to Autism Speaks — Preceding unsigned comment added by 76.88.39.135 (talk) 18:24, 16 November 2013 (UTC)[reply]
https://twitter.com/stevesilberman/status/400064045639675904 -- a critical tweet from Steve Silberman
http://evilautie.org/2013/11/11/this-is-autism-speaks/ -- a altered version of the press release, switching to to focus on actual Autistic people talking
https://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/ -- a long time apologist for AS who has been trying for years to make "change from within" gives up and leaves -- also discusses Autism Every Day and I am Autism videos
http://travelingmonkeys.org/2013/11/12/fear-loathing-and-autism-speaks/ -- another parent vehemently objects
http://www.blog.mamasturnnow.com/2013/11/12/dear-ms-wright-autism-speaks-and-any-others-out-there-who-may-read-this/ -- yet another parent objecting; includes questions from her son
http://thautcast.com/drupal5/content/autism-speaks-cannot-help-people-it-refuses-learn-anything-about -- quotation and comentary on adiaryofamom essay above, including a comment from John Elder Robison (Autism Speaks' one prominent autistic supporter) stating: "This latest missive is profoundly disappointing to me too, Landon."
http://paulacdurbinwestbyautisticblog.blogspot.com/2013/11/autism-speaks-kidnaps-policy-summit.html -- points out efforts to counter Autism Speaks attempt at influencing Congress
http://theautismwars.blogspot.com/2013/11/a-mouse-that-roars-standing-in-defiance.html
http://raisingrebelsouls.blogspot.com/2013/11/the-price-we-pay-for-autism-speaks.html?spref=tw
http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html -- John Elder Robison resigns!
https://theconnorchronicles.wordpress.com/2013/11/12/autism-speaks-does-not-speak-for-us-this-is-autism/
http://pucksandpuzzlepieces.com/2013/11/13/living-not-existing/
http://autisticcommunity.org/2013/11/12/statement-on-the-autism-speaks-to-washington-policy-summit/
http://autismwomensnetwork.org/node/1646
http://feministsonar.com/2013/11/autism-speaks-does-not-speak-for-me/
http://www.decipher-morgan.com/2013/11/autism-speaks-isnt-speaking-for-us.html
http://www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/
http://blog.sfgate.com/lshumaker/2013/11/14/who-does-autism-speaks-speak-for/
http://www.blogher.com/yes-autism-speaks-sucks-what-now
http://thatcrazycrippledchick.blogspot.com/2013/11/this-is-week-autism-speaks-meets-its.html
http://the-art-of-autism.com/autism-speaks-aut-to-listen-to-john-elder-robison/
https://dmitrylaughs.wordpress.com/2013/11/12/my-son-is-not-lost/
http://yeahgoodtimes.blogspot.com/2013/11/autismspeaks-does-not-speak-for-this.html
https://autismandoughtisms.wordpress.com/2013/11/13/crisis-despair-and-everything-else-wrong-with-autism-speaks-call-for-action/
http://www.mostlytruestuff.com/2013/11/autism-speaks-speak-son.html
http://reinventingmommy.blogspot.com.au/2013/11/this-is-not-our-autism.html
http://www.stuartduncan.name/autism/autism-speaks-is-not-and-has-never-been-listening-despite-their-slogan/
http://sharon-theawfultruth.blogspot.co.nz/2013/11/a-view-of-autism-speaks-from-afar.html
http://emmashopebook.com/2013/11/13/whats-wrong-with-autism-speaks/
https://spellitaut.wordpress.com/2013/11/13/autism-speaks-the-last-straw/
http://theepicautistic.com/2013/11/13/does-autism-speaks-really-speak-for-me-2-obviously-not-and-today-they-gave-me-a-new-reason-why/
https://www.facebook.com/qability/posts/229421530552968
https://neitherhighnorlow.wordpress.com/2013/11/15/a-letter-to-an-autism-mom/
http://autismwomensnetwork.org/node/1647

Misuse of donations

Supporting anti-vaxers

http://autismsciencefoundation.wordpress.com/2010/09/10/asf-signs-on-to-asats-open-letter-to-autism-speaks/

I am Autism video

Autism Science Foundation started by ex-AS exec

http://www.nature.com/news/2011/111102/full/479028a.html

Promoting myths

John Elder Robison

http://autisticcats.blogspot.com/2010/03/celebrity-autistic-teams-up-with-autism.html
http://autisticcats.blogspot.com/2010/06/meet-new-autism-speaks.html
http://autisticcats.blogspot.com/2010/03/more-thoughts-on-robison.html
http://www.disabilityscoop.com/2010/03/09/autism-speaks-appointment/7271/
http://autisticsspeak.wordpress.com/2010/03/17/is-autism-speaks-turning-around/
http://autisticbfh.blogspot.com/2010/03/robison-squeaks.html
http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html -- John Elder Robison resigns over the "Autism Speaks to Washington press release"

2011 interview with Steve Silberman

Difficult to categorize

Counter-productive awareness

Bad statistics

΄Stopping Child Abuse "Too Political" for Autism Speaks‘

http://web.archive.org/web/20090223113143/http://autism.change.org/blog/view/stopping_child_abuse_too_political_for_autism_speaks

Liz Feld, new president

http://leftbrainrightbrain.co.uk/2012/06/20/what-will-autism-speaks-look-now/

AutismCares -- fraudulent fundraising around Hurricane Katrina

http://autisticbfh.blogspot.com/2009/12/autism-speaks-to-hurricane-victims-what.html

WrongPlanet takeover by AutismSpeaks

Autism Speaks discussion of Neurodiversity

http://web.archive.org/web/20080615022826/http://meridiusmd899.blogspot.com/2008/06/autism-speaks-token-to-neurodiversity.html

Reports from protests at Autism Speaks Walks

http://www.autistichoya.com/2012/11/protesting-autism-speaks.html

Lack of representation by autistic people

http://www.autistichoya.com/2013/11/autism-speaks-and-representation.html

Multiple issues

http://asancentralohio.blogspot.com/2009/08/why-autism-speaks-does-not-speak-for-us.html
http://dkmnow.wordpress.com/2009/10/10/disability-rights-community-vs-autism-speaks/
http://autistichoya.com/2012/07/how-autism-speaks-must-change.html
http://notragedyhere.blogspot.com/2010/04/toys-r-us-supports-autism-speaks-wtf.html
http://thautcast.com/drupal5/content/whats-still-wrong-autism-speaks
http://web.archive.org/web/20131104201059/http://aspieweb.net/why-is-autism-speaks-so-bad/
http://web.archive.org/web/20100319212901/http://www3.telus.net/anemonecerridwen/AutismSpeaks.htm
http://www.change.org/petitions/tell-lindt-chocolates-that-autism-speaks-doesn-t-speak-for-us
examiner.com/article/why-you-should-not-support-the-upcoming-autism-speaks-walk-events-south-florida-and-elsewhere (examiner.com is on the WP blacklist)
http://autisticselfadvocacynetwork-virginia.blogspot.com/2009/10/asan-and-allies-protest-autism-speaks.html
http://nostereotypeshere.blogspot.com/2009/11/protesting-autism-speaks.html
http://autistichoya.com/2012/07/georgetown-say-no-to-autism-speaks.html
http://autistichoya.com/2012/03/responding-to-autism-speaks.html
http://thecaffeinatedautistic.wordpress.com/so-what-is-the-problem-with-autism-speaks/
http://thecaffeinatedautistic.wordpress.com/2013/03/05/why-i-am-against-autism-speaks-and-you-should-be-too-2/
http://sundial.csun.edu/2012/04/autism-speaks-does-not-represent-the-voices-of-autistic-people/
http://www.califmom.com/home/2012/2/22/autism-speaks-doesnt-speak-for-our-family.html
http://goldenheartedrose.tumblr.com/post/17644810872/so-whats-the-problem-with-autism-speaks
http://disabilityand.me/autistic-people-dont-like-autism-speaks/ -- June 8, 2013
http://illusionofcompetence.blogspot.ca/2012/03/dont-support-autism-speaks.html -- "Very little money donated to Autism Speaks goes toward helping autistic people and families; Autism Speaks talks about us without us; Their fundraising strategies promote fear, stigma, and prejudice against autistic people. ; Autism Speaks is not financially responsible"
http://www.autistichoya.com/2013/11/coopting-the-movement.html
http://smallbutkindamighty.com/2013/04/02/why-i-dont-support-autism-speaks-which-is-why-i-dont-light-it-up-blue/
http://smallbutkindamighty.com/2013/11/12/many-people-mad-autism-speaks-right-now/
http://theepicautistic.com/2013/08/27/does-autism-speaks-really-speak-for-me/
http://www.onequartermama.ca/2013/10/why-i-dont-like-autism-speaks.html — Preceding unsigned comment added by Ilagleti (talk • contribs) 22:29, 11 December 2013 (UTC)[reply]

Social media crisis post

http://timetolisten.blogspot.com/2011/02/autism-speaks-shut-up-and-listen.html
http://lizditz.typepad.com/i_speak_of_dreams/2012/01/when-national-organizations-offend-those-they-are-supposed-to-serve.html
Liz Ditz did a writeup after it came out that they’d whitetexted rather than deleting

Non-negative reporting on Autism Speaks

Can’t load

http://www.parade.com/articles/editions/2008/edition_01-27-2008/Autism_Changes_Everything

Videos

http://mediamatters.org/video/2012/04/02/on-fox-donald-trump-pushes-dubious-link-between/184590
http://www.youtube.com/watch?v=R3DwCn6VeZY
http://diversityrules.typepad.com/my_weblog/2009/07/more-misleading-images-of-autism-displayed-by-autism-speaks.html
http://www.youtube.com/watch?v=xbZOD9xOnJs
https://www.youtube.com/watch?v=yU2paLv1MGE
I Am Autism Speaks!
http://www.youtube.com/watch?v=R3DwCn6VeZY
Project VoiceScape: No Pity (A Documentary by Drew Morton Goldsmith)

Responses to the "I Want to Say" video

http://www.autismwomensnetwork.org/article/not-good-enough-autism-speaks
I watched a video about AAC changing lives of non-speaking Autistics. It sounded great and the title - I Want to Say - seemed to indicate that our voices, the voices of Autistics who type to communicate, would be the main focus.

...

Autistics in the video were not allowed to get their message across. They were never asked what their message was, how they feel or even asked to type their names.

Not good enough, Autism Speaks. Not even close.

Simone Greggs -- AS refuses to hire an Autism parent when she asked for accommodations

http://www.wjla.com/articles/2012/08/mom-sues-autism-speaks-after-job-offer-is-rescinded-78415.html
http://www.care2.com/causes/autism-mother-sues-autism-speaks-for-disability-discrimination.html
The mother of a teenage autistic son is suing the organization Autism Speaks for alleging rescinding a job offer after she asked if workplace accommodations might be possible due to her child’s needs.

That is, an organization that says it champions the needs of autistic individuals and their families is being sued for failing to accommodate the needs of a mother and of her autistic child.
[According] to the court filings, Greggs was then told that Autism Speaks was ΄rescinding the employment offer because they did not want to make any accommodations for the care of her autistic child.‘
http://www.care2.com/causes/a-mother-offers-an-autism-organization-some-food-for-thought.html - August 23, 2013
The outcome of Greggs’s lawsuit has yet to be determined. In the meantime, she has written a self-published book, “Here’s What I Want You To Know.”

Opposing hate and fear based language but not directly calling out Autism Speaks

https://ollibean.com/2012/04/05/epidemic-awareness-and-us-autistics/
http://autismwomensnetwork.org/article/autistic-people-spoke
https://ollibean.com/2012/12/26/it-is-about-respect/
http://autismwomensnetwork.org/article/autism-acceptance
http://srsalas.com/?p=3577 -- "Autistic History Month 2013: ACCEPTANCE"

Links to additional posts

http://autisticswanttosay.blogspot.com/p/postroll.html

Unsorted

http://imgur.com/TA3GK
http://welcomedintruder.wordpress.com/2012/07/12/lies-statistics-and-autism-speaks/
http://austryzor.tumblr.com/post/43773201395/attention-followers -- list of companies that support Autism Speaks, copied from their website, with some commentary at the end
http://www.tuftsdaily.com/op-ed-autism-speaks-does-not-speak-for-autistic-people-1.2802262 by Finn Gardiner -- general explanation of why campus groups should not support AS
http://autism.lovetoknow.com/Autism_Speaks :
One is the policy of Autism Speaks to view Autism Spectrum Disorder as a disease or medical condition. … Another medical controversy is the view of vaccinations and their alleged role in causing autism. … The short film mentioned above, Autism Every Day, has also been the center of controversy. There is some dispute between the producer Lauren Thierry and Autism Speaks in regards to her payment. Also, she was criticized by many for portraying only the most negative aspects of raising an autistic child, and also for including an Autism Speaks staff member with her autistic child speculating that sometimes she felt death would be preferable to living with autism.
squidoo.com/autistics-speak-for-themselves (squidoo.com is on the WP blacklist)
There are no Autistic members in any controlling position of Autism Speaks, only parents and other related family members.
http://www.ageofautism.com/2008/07/autism-speaks-t.html :
Is a prenatal test for autism what Autism Speaks/NAAR has in mind with its unrelenting search for the genetics behind autism? Is this what it this huge charity is doing with the millions of dollars it has at its disposal (good word choice, yes?)
http://autism.about.com/b/2007/06/07/autism-speaks-problems-grow.htm -> http://www.foxnews.com/story/0,2933,278814,00.html :
This week, the Wrights posted a press release on the Autism Speaks Web site in effect disowning daughter Katie's comments in a video interview she gave to a critic of Autism Speaks. … Filmmaker Lauren Thierry is accusing the Wrights of appropriating her award-winning film "Autism Every Day" for their own purposes.
C.f. http://www.mindlessmommy.com/2007/06/a-little-autism-speaks-controversy-brewing.html
http://web.archive.org/web/20090207143137/http://www.autismvox.com/katie-wright-does-not-speak-for-autism-speaks/
examiner.com/article/why-autistic-people-don-t-like-autism-speaks : (examiner.com is on the WP blacklist)
There are various reasons, many of which involve where their money goes, the stances they take regarding issues that are important to autistic people, their outright refusal to have autistic adults on their board of directors (autistic people do not even have a token presence in Autism Speaks's leadership), their continual use of pity advertising, their unreproducable facts and figures, and their insistence that autism is universally tragic and that autistic people should not exist
http://autisticbfh.blogspot.com/2006/07/autism-speaks-poisonous-ideas.html -> http://web.archive.org/web/20081015191637/http://www.autismvox.com/autisms-angels-and-a-hidden-dark-thought -> http://www.autismspeaks.org/docs/Town_and_Country.pdf
At times, the pain has become almost unbearable. In a documentary entitled Autism: True Lives, Harry describes the very large pond next to their house in the Hamptons. "We put locks on all the doors leading outside because we didn’t want David possibly going into the pond. But there were times when-–he stops, then talks through his tears--you hoped he did, because you wouldn’t want him to suffer like this all his life."

Everyone urged the Slatkins to cut this from the documentary, Laura says, but they left it in. ΄Since then, we’ve spoken to many families who say, "We all share that hidden, dark thought."
http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php
We, the undersigned:
Utterly repudiate the notion of murder being an acceptable response to disability

Vehemently deny that most parents of autistic — or otherwise disabled — children harbour thoughts of murder

Testify that the false 'reality' concocted by Autism Speaks film 'Autism Every Day' is not a true reflection of the reality of parenting an autistic child
http://web.archive.org/web/20131104195046/http://aspieweb.net/aspieweb-being-bullied-by-autism-speaks/
I just received a legal notice from the big bad bully Autism Speaks because I designed a t-shirt that says "Autism Speaks Can Go Away."
C.f. http://web.archive.org/web/20131104201021/http://aspieweb.net/aspieweb-vs-autism-speaks-fight-for-the-right-for-autistics-to-speak/
http://web.archive.org/web/20131104195128/http://aspieweb.net/the-word-from-zazzle-management/ : ΄Because Autism Speaks has displayed this behavior before, i assumed they were involved and they were not. I apologize to Autism Speaks about that assumption.‘
http://web.archive.org/web/20131104201024/http://aspieweb.net/governor-parents-and-lawmakers-furious-with-autism-speaks/ : Autism Speaks while advocating for what it thinks is best for Autistic People disregards others input and upsets Parents and lawmakers in Pensylvania.
http://autisticbfh.blogspot.com/2007/09/autism-speaks-attacks-local-charitys.html
When a local autism charity in Vermont decided to hold its own fundraising walk and keep the proceeds in the community, rather than inviting Autism Speaks as it had done last year, Autism Speaks reacted like a spiteful schoolyard bully and deliberately set out to sabotage the local group's event.
http://www.care2.com/causes/autism-mother-sues-autism-speaks-for-disability-discrimination.html
http://aspiewarrior.com/2012/08/10/ignorance-breeds-ignorance-autism-speaks/
"Autism Speaks doesn’t advocate for Autistic people. They advocate for people inconvenienced by Autistic people."
http://tigerbeatdown.com/2012/04/09/autism-speaks-but-you-dont-have-to-listen/