New Autism Speaks Masterpost (Updated 4/4/17)

Update 4/4/17 – as of December 2015, Autism Speaks now has two autistic board members, Dr. Stephen Shore and Dr. Valarie Paradiz.   In addition, their mission statement no longer includes the word “cure” .  You can read more specifics here. 

When a person thinks of the term “Autism Awareness” in the United States, it’s usually one organization that comes to mind – Autism Speaks.  It is heralded by celebrities, politicians, nonprofit and for profit organizations alike. Many parents of autistic children enthusiastically applaud their “efforts”, even partaking in fundraising, despite not knowing much about what those efforts entail.

Ask an autistic person, however, and you might get quite a different picture of Autism Speaks.

The number one tenet of any activism among disability groups is “Nothing About Us Without Us”, yet Autism Speaks can’t even manage to meet this one basic qualification.  They have never had an autistic member on their board.  Their current board consists of parents, including one who founded SafeMinds, which has contributed to the anti vaccination movement, as well as another board member who used be a board member for Cure Autism Now. To view the full list, click here. To view a list of other leadership in their organization, click here.

The only autistic person high enough up in their leadership to be worth mentioning was John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s Syndrome and part of their science advisory board.  He resigned his position in November 2013, a decision he spoke about on his blog.

Autism Speaks spends just 3% of the money they raise back into helping families and autistic people.  This comes in various forms, and not all of it is aimed at actually helping autistic people.  Some of it is aimed at communication devices for autistic children and teenagers, and this is of course a very good thing.  Much of it is also aimed at providing ABA therapy for autistic people, which is a behavioral intervention that much of the autism community opposes, particularly autistic people who are now adults who were subjected to it as children.  Some accounts of this are here, here, here and here.

Autism Speaks’ goals are clearly stated in their mission statement.  It reads:

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families, and society: and we work to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

I have bolded the parts that stuck out to me as harmful and problematic.  Autism Speaks wants to cure autistic people of our autism.  Have they involved us in the process? Have they asked any of us? Again, the guiding principle of the disability rights movement is “Nothing about us without us”, but Autism Speaks has left autistic people out of the equation entirely.  In addition, it’s clear to see when perusing their scientific research that much of the research is focused on identifying genetic markers for autism, presumably so that autism can be prevented.

Is autism an “urgent, global health crisis”?  I don’t believe it is.  Studies have shown that there is a similar percentage of adults that show the same symptoms of autism as is shown among children currently being diagnosed with autism.  Link here.

The above mission statement is indicative of a larger problem in the way that Autism Speaks speaks about autistic people.

  • Autism Speaks is responsible for the atrocity known as I Am Autism. Directed by Alfonso Cuaron, this promotional video utilized a disembodied voice to tell the audience what precisely “autism had stolen” from the families of autistic children, even citing divorce as a result of autism, likely relying on a now disproven statistic that 80% of marriages in which there is an autistic child end in divorce.  Neither Cuaron or Autism Speaks has ever offered an apology for this monstrosity, though they did remove it from their YouTube channel.
  • Autism Speaks is responsible for another media piece called Autism Everyday.  There are several issues with this video.  The parents spend most of the time talking about what they cannot do with an autistic child.  They cannot go out for coffee with their friends, they cannot do x, y, and z, because their child is autistic.  The conversation seems to be only focused on what the parents’ lives are like, and there is almost no discussion on how it feels for the autistic child themselves.  The worst part of this video, however, is when Alison Singer, former Autism Speaks board member and founder of the Autism Science Foundation, speaks about her desire to drive her daughter and herself off the George Washington Bridge, and only stopped because she was thinking of how it would affect her non-autistic daughter.  The heartbreaking part of this is that she says all of this in front of her autistic daughter, with no regard as to whether her daughter can hear and understand.
  • Autism Speaks often refers to autism as a “puzzle”, making use of a human-shaped blue puzzle piece in their logo.  The puzzle piece did not originate with Autism Speaks, but their continued use of it, in addition to phrases like “…will find the missing piece of the puzzle” as stated in their mission statement shows that they don’t really value autistic people as fully human people.  We are puzzles and we are missing pieces of ourselves, and we must become neurotypical in order to be respected by this group.
  • Suzanne Wright, one half of the founding team of Bob and Suzanne Wright, who founded Autism Speaks in 2005, focuses her “founder’s message” on speaking about the ways to supposedly help the families of autistic people, with little discussion of how to help autistic people ourselves.  She concludes this message with the phrase “This disorder has taken our children away.  It’s time to get them back.”
  • Jess, a blogger at  A Diary of a Mom and mother of an autistic daughter, detailed her encounter with Suzanne Wright and Autism Speaks here. This details everything that is wrong with ABA therapy, lack of consent, as well as just having no idea how to relate to an autistic child.  The fact that Suzanne Wright was one of the first voices of an organization such as Autism Speaks, while having no idea what consent even means, is horrifying.

Autism Speaks has been involved in legislative issues, and while many people would consider this to be a positive effort, the effect this has on autistic people is actually quite negative.

As stated previously, they have members of their board who are very concerned with environmental factors (such as vaccines) and how they contribute to autism diagnoses.  Autism Speaks was, for quite a long while, very much anti vaccination.  Alison Singer left Autism Speaks in 2009, no longer wanting to be a party to an organization that wanted to spend so much on researching vaccines, a link that has long been disproven.

Autism Speaks, among other groups, blocked the inclusion of the Shakowsky Amendment in the recent Autism CARES ACT, which would have included some of the following:

  • A requirement that the Leadership and Education in Neurodevelopmental Disabilities (LEND) program, a federally-funded training program to provide interdisciplinary training to students seeking to support children and youth with disabilities, take steps to recruit trainees on the autism spectrum and those with other developmental disabilities;
  • Specifically emphasizing the needs of racial and ethnic minority groups, women and girls and adolescents and adults on the autism spectrum in the definition of “culturally competent services”;
  • A requirement that autistic people make up at least four of the public members of the Inter-Agency Autism Coordinating Committee or one-third of the public membership, whichever number is higher, and that at least one such individual be a person who has received Medicaid Home and Community Based Services;
  • A requirement that LEND programs convene stakeholder advisory committees consisting of a majority of individuals on the autism spectrum or with other developmental disabilities;
  • Opening the Autism Centers of Excellence research funding stream to include research on developmental disability service provision, supported employment, inclusive education and other fields related to the integration of autistic people into the broader community; and,
  • A requirement that each Autism Center of Excellence grant awarded include a stakeholder advisory committee with a majority of individuals on the autism spectrum.

Autism Speaks has also allied themselves with the Judge Rotenberg Center. If you don’t know what the Judge Rotenberg Center is, it is an institutional that routinely uses electroshock on autistic people as punishment for even minor infractions.  Here are a few links for more information.  xxx Please read all links with caution.  This is a gruesome practice, and the fact that Autism Speaks is offering such an organization a place at one of their resource fairs, as a potential resource for parents of autistic children is quite alarming.

Autism Speaks has recently teamed up with Google for the Ten Thousand Genomes Project, also known as AUT10K.  The major issues with this project are mentioned at the link, but they include questioning Autism Speaks’ intentions with the information as well as ethical and privacy concerns .  Some information regarding autistic people’s rights with regard to genetic testing can be found here.

A short list of a few other notable failures of Autism Speaks:

  • Autism speaks has plagiarized/violated the copyright of an autistic adult.
  • Autism Speaks shared the news of Google removing hate speech regarding autistics from Google’s autofill feature, completely erasing any mention of autistic people’s flashblogs having anything to do with the change.  It was only after a member of the autism community (and not a parent, but an autistic person themselves) spoke with a reporter about the flashblog and a statement was released to the media that Google decided to make this change.
  • This woman’s job offer was rescinded after she asked Autism Speaks for accommodations in caring for her autistic son.  They refused, and she made necessary accommodations for childcare, but they withdrew her offer anyways.
  • Autism Speaks has threatened at least two autistic teenagers with lawsuits over legal parodies.  Here and here.
  • Autism Speaks has reported on the murders of autistic people by their parents/caretakers, but has never reported said facts without somehow pointing to “lack of resources” as a reason for such tragedies, as well as continually ignoring their own possible culpability in these crimes.  One example is the attempted murder of Issy Stapleton. The more negative rhetoric there is about autism, the more people will dehumanize autistic people to the point that autistic people become a list of behaviors instead of actual people with emotions and needs.
  • Autism Speaks often utilizes functioning labels when speaking about autistic adults.  They use the numbers of so-called “high functioning” autistic adults to prove that autism is an epidemic, but refuse to listen to anyone they deem as high functioning (essentially, anyone who can use a computer).  They incidentally also ignore people they deem as “low-functioning”, because they refuse to presume competence.  Here is a lovely message written by a nonspeaking Autistic advocate, Amy Squenzia.  In addition, here is why you should not be using functioning labels (or tell me how “high functioning” you think I am because I am able to type this document).

 

Interested in learning more?

 

Want to support autistic people? Here are a few worthy organizations/groups/pages.

83 thoughts on “New Autism Speaks Masterpost (Updated 4/4/17)

  1. Would it be possible that I could reblog this? I love, love, love this post, and it needs to be shared around the world.
    Rachele @ mypuzzlingpiece.com

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      1. Oh, thank you! I don’t get to write as often as I’d like, but I’m glad that there are people who still read when I do!

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  2. My partner is Autistic. Said partner has no problems with the existence of Autism Speaks, as a bridge. However, we do not support them as an organization (financially or with volunteer efforts or anything). This is because my partner thinks there are organizations that do a better job and aid in better ways; with actual help. My partner and I are of the mind that Autism doesn’t require treatment; that it isn’t something that needs to be treated. Instead, it needs to be lived with and understood. We do support behavioural therapy, but that does depend on what is needed. It is also ludicrous that the majority of Americans and the majority of organizations believe that Autism is really only something which affects children. It is not a health crisis, and my partner (nor I) do not seek any kind of cure and I feel offended, on behalf of my relationship, when people speak about being Autistic as needing a cure.

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  3. Would it be an offense if instead of high-functioning we used the word mild? My sister has autism and I’m doing a awareness poster for school. I want to make the poster accurate without sticking labels on anyone. Thank you.

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    1. It’s still a problem to refer to autistic people with mild or severe labels, because these labels don’t mean anything, they get us all dismissed by nt people (just in different ways). Here is a good post about that :
      http://autisticbfh.blogspot.com/2006/12/high-functioning-is-insult-too.html?m=1

      Some people are called “high functioning” Because they can write and speak and can’t live independently, while some people called “low functioning” might not be able to speak and need an aide but live more independently. The labeling is inconsistent and not all that useful.

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  4. The part of the mission statement about a cure was set in bold, but no mention that I can see of the fact many of us do not want a ‘cure’, or that autism is not separate from us so the only way to ‘cure’ autism would be to eradicate autistic people. This to me is a big issue with Autism Speaks, they show no interest in helping autistic people (e.g. via care, treatments to deal with negative symptoms, research in utilising positive symptoms, life coaching, assisting independence, employment rights, etc.) but they seek to wipe us out – essentially they represent eugenics.

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  5. As the secretary of Autism Eastern Cape, based in Port Elizabeth, South Africa, thank you for this information. In our country in particular, where there is so much misinformation about autism we definitely need to be more open to hear the autistic voice more often, and more clearly.

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  6. Your link to the dreadful “I Am Autism” video doesn’t work anymore. Autism Speaks are determined to erase all traces of its existence. It can still be found on YouTube here:

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  7. I’m a psychology major slated to graduate this fall. My boyfriend was diagnosed with Asperger’s as a child, and I’ve heard of Autism Speaks, as have most people I know. In fact, at least two of my friends at my college have siblings with autism. I think both of them support Autism Speaks, so I assumed the best. But whenever I see comments from people with autism, those comments overwhelmingly seem to oppose the organization. So I started digging.

    I’m glad I found your post. It’s eloquent, your evidence is fairly and conscientiously presented, and you were respectful. I’ve shared it on Facebook, asking for opinions on the organization, and am emailing my psychology professors for their professional opinions on it, too. Thank you for helping get this dialogue going! I think it’s very important.

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  8. Thank you so much for this masterpost. I am autistic and ever since I learned how bad Autism Speaks is I have been trying to get my family informed. I am dependent on them so it’s very important to me that they understand, but they never listen. Each time it comes up I repeat what I have told them time and again and they are surprised at what I have to say. So now with print offs from this post and many of the links provided I am creating an informational packet to give to them (since coming to the website would apparently be too much effort for them :/ ). Once I finish the packet and give it to them I will share the results, if you are interested. Thank you so much for putting this together, it has all the words I can’t put together myself.

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    1. You are so welcome! Good luck! Let me know if there’s anything else I can help with. I have a post on here directed at parents (especially those of the newly diagnosed), which might be useful even if your diagnosis is long standing. I wish you much happiness and I know how nerve wracking it is to have parents who don’t understand. I’m in my mid-30s and I still have to explain some things to my parents about autism and Autism Speaks. They’re getting it, but it’s a longish process.

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  9. Would you be able to recommend a charity that is reputable? One that supports things like resources for parents and for individuals with autism, research into which therapies work best, respite, awareness, etc.

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    1. If you read both this and the post titled “Old Autism Speaks masterpost”, you’ll see that at the bottom, I’ve included alternatives to Autism Speaks.

      Also if I’ve not already mentioned it, Parenting Autistic Children with Love and Acceptance is a fantastic resource page on Facebook.

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  10. Hey there,
    First of all, I’d like to congratulate you on your morality and the enthusiasm to organise and publicly share the data herein.
    I mostly appreciate that you keep on constantly updating it with new threads and that you prove you CARE.
    To be sincere, I have read your article on “Autism Speak” while digging on possible help with my struggle against French associations/organisations/psychologists.
    A foreigner, perceived as “normal just not adapted to the country” (when all facts show the inverse!!!), I’d like to ask you what trustworthy organisation, European or that deals with cases in Europe, would you advice me on to possibly help me at least be officially diagnosed. I am sure about me having Asperger in a pretty severe form (spent all my life with me), and I “have the gut” that two of my kids might have it too. Fluent in several languages, I would learn a new one, if I have to.
    Thank you in advance for your attention!
    Best regards,
    Mer Ida

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