How to Boycott Autism Speaks

Autism Speaks (abbreviated to AS or sometimes A$) is a highly controversial organization, run by non-autistic people, that seeks to eliminate autism.[1] Its goals and rhetoric have resulted in protests, led by autistic people, and many of their loved ones and allies. Here is how to do your research and speak out to help autistic people everywhere.

This article discusses some disturbing material, particularly in the section "Doing Your Research." Skip this section if needed.

Part 1
Part 1 of 4:

Doing Your Research

It's important to carefully analyze an issue before deciding where you stand. Here is how to do your research and find material.

  1. Image titled Disinterested Man.png
    1
    Consider your mental health. Information about Autism Speaks' history is deeply disturbing. If you have disabilities such as anxiety, depression, PTSD, or other mental health conditions, reading about AS may trigger a downward spiral. If you are prone to this, proceed with caution.
    • Autistic people with self-esteem issues should especially be mindful. Reading what Autism Speaks has to say may worsen your self-image.
    • Have a self care plan in case your mental health issues are triggered. This could be a warm bath, a good book, time with a loved one, making art, or something else. Do not research right before bedtime.
  2. Image titled Autism Speaks Search Results Controversy 2.png
    2
    Be mindful of search engine results. Autism Speaks is a very large and influential group, so it and its supporters may dominate the first pages of search results. You need to know where to look in order to find more critical opinions.
    • When searching "Autism Speaks," add keywords such as "controversy," "bad," "eugenics," or "ASAN" (an organization that has written about Autism Speaks). It might also be worth noting that boycotters of Autism Speaks sometimes refer to it as 'Autism $peaks', with a dollar sign replacing the S.
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  3. Image titled Young Autistic Woman Mentions Neurodiversity.png
    3
    Place autistic voices first. Autistic people have a personal stake in their futures, their needs, and how they are treated by others. Make sure that your research includes people of all ability levels, from the independent people to those who need round-the-clock support, and everyone in between.
    • Read from autistic people like John Elder Robison,[2] Lydia Brown,[3] Ari Ne'eman of ASAN,[4] and more.
  4. Image titled Mom Shields Autistic Son from Ableism.png
    4
    Consider parent and ally perspectives as well. Many non-autistic people are also concerned about the rhetoric and motives of AS. Their thoughts are also worth listening to.
    • Read from Ariane Zurcher,[5] Emily Willingham,[6] Deanne Shoyer, Steve Silberman,[7] Jess from Diary of a Mom,[8] and others.
    • Some people, such as Carol Greenburg,[9] are autistic parents of autistic children.
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    5
    Read what Autism Speaks itself has said and done. AS' rhetoric can give you a better sense of its attitude towards autism. Take your mental health into account.
    • Watch the video "I Am Autism,"[10] or read the transcript.[11] This video has a voice-over, calling itself autism, describing how it will destroy parents' lives.
    • Read the wording of the militant Call to Action, a letter that resulted in several resignations.[12]
    • Watch or read about the documentary "Autism Every Day." This video includes a scene of an autistic girl's mother talking about how she contemplated killing her, as her upset daughter listens.[13] [14] [15]
    • Consider its response to murder, which is often portrayed as a tragic but understandable result of lack of services.[16] [17]

    Keep in mind that Autism Speaks has made superficial changes lately, adopting the aesthetics and vocabulary of the neurodiversity movement. Yet its actions show little change,[18] [19] and it hasn't apologized or even acknowledged past harms.

  6. Image titled Tablet with Pie Chart.png
    6
    Check the math and science. Autism Speaks is known for spreading misinformation, especially in past years, despite evidence disproving their claims.[20] Compare things that Autism Speaks has said to the actual numbers and research.
    • Autism Speaks entertained and gave credibility to anti-vaccination beliefs for a long time, long after evidence was clear that vaccines aren't linked to autism.[21] [22] [23]
    • Autism Speaks claimed that having an autistic child causes divorce[24] and likely spread the myth that 80% of parents who have autistic kids get a divorce.[25] [26] But research shows no real difference in family separations.[27]
    • A petition was called to investigate Autism Speaks for fraud after people described inconsistencies about its financial claims.[28]
  7. Image titled Autism Search Results Trigger Warning.png
    7
    Be mindful of trigger warnings on articles. Some articles are more detailed and intense than others. Some discuss severe ableism, child abuse, torture, murder, murder sympathizers, eugenics, and other disturbing content. If you are a sensitive person, pause and consider whether you are able to handle it at the moment.
    • Autism Speaks does not use trigger warnings on its own disturbing materials. Be cautious if you visit the site or read about what it says.
    • The Judge Rotenberg Center, other abuses in ABA therapy, and restraint/seclusion may be especially upsetting. You may wish to avoid these subjects.
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Part 2
Part 2 of 4:

Boycotting Autism Speaks

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    Keep Autism Speaks media away from the children and autistic people in your family. If the TV or radio has an ad or episode about the group, turn it off. Keep blue puzzle pieces out. Avoid showing or telling them the worst of what you've learned about AS. This can help keep them from absorbing attitudes from it.
    • If they ask, give an age-appropriate explanation. For example, "That's a group that bullies people, so I don't want to watch that ad, because it's not true."
    • Teens or adults may wish to get involved. If they're autistic, consider whether their self-esteem is strong enough. Supervise their participation if you have concerns about them being exposed to something too disturbing.
    • Be especially cautious during April, when AS is the most active. This month can be hard on autistic people.
  2. Image titled Person Says No to Ableist Puzzle Piece.png
    2
    Refuse to participate in any events that benefit Autism Speaks. This includes "light it up blue," many autism walks, and many "autism awareness" events. Research an event before deciding to participate, to make sure that you are supporting a good cause.
    • As a shortcut, puzzle pieces and the color blue often suggest connections to Autism Speaks. This is not a perfect rule, just a red flag.
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    3
    Protest at Autism Speaks events if you are able. It is common for autistics, parents, and allies to protest at AS walks. You can make signs, write with chalk, and encourage people to learn about autism in a less stigmatizing way.
    • Protesting at these events is not for the faint of heart, because autistic people are not always treated well. Some AS supporters speak very aggressively,[29] and sometimes, they throw food.[30] Bring a support person if needed.
    • If you would be too stressed to show up, try making posters, or writing accepting messages in chalk before the event begins.

    Tip: Some people at these events want to be supportive to autistic people but don't realize what Autism Speaks stands for. Assume that they might be well-meaning people who may want to know the truth about AS. Some of them are potential friends and allies, so try inviting them to join you.

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    4
    Consider boycotting and writing to companies that support Autism Speaks. While AS is known for not listening, companies are different, and some (like Build A Bear) have withdrawn support after community outcry.[31]
    • A list of companies supporting AS is available online.
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    5
    Visit the official site of the boycott movement. There is a Boycott Autism Speaks website, in addition to various social media accounts. While you do not need to become officially involved, it may help you keep up to date with the news, if you'd like.
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Part 3
Part 3 of 4:

Supporting Autism Acceptance

Autistic people still need support from society. Here is how to take action with groups that do speak for them.

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    1
    Find organizations that support autistic people. These organizations will be run or co-run by autistic people, and have autistics at all levels of the organization. Here are some basic guidelines for a good autism organization:
    • Meaningful autistic leadership (not just tokenism)
    • Goal of support, not eradication
    • Includes support for autistics of all ages (not just children)
    • Unambiguous support for human rights; against abusive therapy and murder
    • Fights stigma; does not exploit fear for profit

    Tip: ASAN, the Autism Women & Nonbinary Network, the Thinking Person's Guide to Autism, and GRASP are examples that are widely supported in the Autistic community.[32]

  2. Image titled Laptop on Neurodiversity Website.png
    2
    Learn about the neurodiversity and autistic rights movements. Autistic people such as Jim Sinclair have been advocating since before the turn of the century.[33] In order to support autistic people, it's important to learn what many of them have to say.
    • Neurotribes by Steve Silberman offers a detailed history of autism.
    • The social model of disability presents a more inclusion-based, accepting view of disability.[34]
  3. Image titled Two Girls with Autism Acceptance Shirts.png
    3
    Celebrate Autism Acceptance Month in April.[35] This month focuses on social support, accommodation, and respect towards autistic people, and is distinct from Autism Speaks' fear-based campaign.
    • Wear #REDinstead for autism acceptance.[36] [37]
    • Share messages from autistic people online.
    • Post on social media about autism acceptance and neurodiversity.
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    4
    Observe the Disability Day of Mourning on March 1. This day commemorates the disabled people, including many autistic people, killed by their caregivers.[38] [39] Many disabled people fight back against the rhetoric that murder is understandable because disability is such a burden.[40] [41]
    • This day reminds people why acceptance, support, and inclusion are so important.
  5. Image titled Teens at Autism Acceptance Event.png
    5
    Teach people about autism in an autistic-friendly manner. Help spread accurate and compassionate information. Instead of saying autistic people are broken, say that they need extra support. Instead of saying they are burdens, say that they have unique skills, and that every person is lovable and important.
    • Try sharing information like helping someone with sensory overload or handling someone's stimming. WikiHow articles may be useful to distribute.
    • Encourage autistic people and their loved ones to reach out to the Autistic community for help.
    • Try making a list of autism resources, to hand out to people who need it. Consider the Autism Acceptance Month website (which has a resource list),[42] the Thinking Person's Guide to Autism, wikiHow, and other sites.
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    6
    Support policies that empower autistic people. This includes enabling self-determination, fighting abusive therapies, providing resources for every stage of life, and pushing for the inclusion of autistic people in committees about autism.
    • Join or organize letter-writing and email campaigns.
    • Create and sign petitions.
    • Signal boost articles describing the policies.
    • Encourage others to get involved.

    Tip: Be prepared for Autism Speaks to push back. For example, it blocked the Schakowsky amendment of the Autism CARES act, which would have helped empower autistic adults.[43] [44]

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    7
    Collaborate with autistic adults and other advocates. They can help you find events to participate in, and guide you towards good organizations and good people.
    • Consider the hashtags #AskAnAutistic (where autistic people can answer your questions) and #ActuallyAutistic (where autistics may post, and non-autistics may read).
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    8
    Support the autistic people in your life. Be patient and accommodating towards their needs. Remind them of their capabilities, and help them feel confident and strong. Look for ways for them to adapt and shine.
  9. Image titled Preppy Young Woman Talks.png
    9
    Educate others about Autism Speaks. Encourage them to join more positive campaigns. People might get involved with AS without knowing the details of what it says and does.
    • You could use a script like "That's a scam" or "That's run by a group that harms autistic people. Would you like to participate in _______ instead?"
    • Praise their willingness to help, and encourage them to participate in a group alongside autistic people (instead of despite their protests).
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Part 4
Part 4 of 4:

Working Well

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    1
    Assume ignorance before malice. People might share links to Autism Speaks articles, donate money, or participate in walks, without knowing exactly what they are supporting.
  2. Image titled Sad Guy Takes Deep Breath.png
    2
    Stay as polite and considerate as possible. Assume the best of people, and "take the high road" by keeping on your best behavior, even if they are not. Good manners are not required on or off the internet, but they are nice.
    • If you're too angry to do this, step away. Let someone with more patience or spoons handle it, or deal with it later once you feel ready.
    • Be polite and firm with mean people. For example, "Leave my friend alone," "You are creating an unsafe space and you need to leave," or "It is not okay to talk to people that way. Everyone has worth."
    • If you don't know how to deal with a mean person, ask a trusted person for help.
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    3
    Know when to walk away. It's very difficult to speak rationally and be nice to a person who is determined to be awful. Manipulation, intimidation, yelling, et cetera, are not okay. If someone is making you feel terrible, stop talking to them.
    • Learn how to block people on social media. You can block someone for any reason you want.
    • Use scripts like "I need some air," "This conversation is bad for my mental health, so I'm ending it," "Don't talk to me anymore," or "You've violated this site's comment policy, and if you don't stop it, you will be banned."
    • Remember, if someone is determined not to change their mind, you talking to them won't help anyone. You're just wasting energy that could be used productively.
  4. Image titled Girl Comforts Sad Friend 1.png
    4
    Deal with difficult emotions. People may say very mean and upsetting things to you. They might try to argue that things like murder, abuse, eugenics, etc. really aren't that bad. They might treat you, and others, like dirt. It's normal and okay to get upset about this. Treat your feelings as real and valid.
    • Walk away if you get too upset. You can always come back at a calmer time.
    • Talk to someone you trust if you become overwhelmed by bad feelings. Don't bottle it up.
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    5
    Take breaks as needed. You do not have to keep pushing if you feel frustrated or about to cry. Place your mental health first. Step away to talk to a loved one, snuggle with a pet, or take a walk in the sunshine. Or, spend time in a safe space or more protected community (e.g., an autism acceptance blog).
    • Ignoring your feelings won't help anyone. An over-stressed, overworked activist is not a very effective one.
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    6
    Support those around you, especially the autistic people who need it. Collaborate on projects, and encourage them to look after their mental health. If you see an autistic person feeling bad about themselves, say a few encouraging words or drop them a kind note. Boycotting Autism Speaks is a movement focused on supporting autistics. Reach out, accept them as they are, and show them that you care.
    • Autistic advocates may have trouble reading their own emotions. If you noticed that they are becoming over-stressed with activism, gently suggest a break to stim or do something fun.
    • Look out for the autistic people in your life, at all ages. Even if young children are kept away from Autism Speaks, they may still absorb negative attitudes about autism from the people around them. Remind them that you love and value them.
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References

  1. ↑ http://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks/
  2. ↑ https://www.disabilityscoop.com/2013/11/14/noted-cuts-ties-autism-speaks/18893/
  3. ↑ http://www.autistichoya.com/2012/07/georgetown-say-no-to-autism-speaks.html
  4. ↑ http://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks/
  5. ↑ https://emmashopebook.com/2013/11/13/whats-wrong-with-autism-speaks/
  6. ↑ http://www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/#30c0d6875ad6
  7. ↑ http://www.latimes.com/opinion/op-ed/la-oe-0824-silberman-autism-speaks-20150824-story.html
  8. ↑ https://adiaryofamom.com/2013/11/12/no-more-a-letter-to-suzanne-wright/
  9. ↑ http://www.thinkingautismguide.com/2011/04/interview-with-carol-greenburg-autism.html
  1. ↑ https://www.youtube.com/watch?v=9UgLnWJFGHQ
  2. ↑ http://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/
  3. ↑ https://www.psychologytoday.com/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle
  4. ↑ https://en.wikipedia.org/wiki/Autism_Every_Day
  5. ↑ https://www.facebook.com/notes/amy-sequenzia/transcript-of-selected-scenes-or-the-infamous-autism-speaks-video-autism-every-d/10152666260923701/ (quotes from Autism Every Day transcribed)
  6. ↑ https://leftbrainrightbrain.co.uk/2006/07/14/lauren-thierry-autism-every-day-why-lie/
  7. ↑ http://www.thedp.com/article/2014/10/autism-speaks-penn-neurodiversity-problem
  8. ↑ http://autismwomensnetwork.org/is-autism-speaks-a-hate-group/
  9. ↑ https://www.washingtonpost.com/outlook/2020/02/14/biggest-autism-advocacy-group-is-still-failing-too-many-autistic-people/
  10. ↑ https://misslunarose.home.blog/2020/07/03/autism-speaks-rebranding/
  11. ↑ https://mediabiasfactcheck.com/autism-speaks/
  12. ↑ https://shotofprevention.com/2015/02/21/autism-speaks-too-late-on-vaccines/
  13. ↑ https://www.disabilityscoop.com/2015/02/09/autism-speaks-vaccines/20040/
  14. ↑ https://www.thedailybeast.com/autism-speaks-but-should-everyone-listen
  15. ↑ https://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/
  16. ↑ https://www.science20.com/science_autism_spectrum_disorders/no_real_difference_divorce_rate_families_children_autism_spectrum
  17. ↑ https://www.washingtonpost.com/outlook/toxic-parenting-myths-make-life-harder-for-people-with-autism-that-must-change/2019/02/25/24bd60f6-2f1b-11e9-813a-0ab2f17e305b_story.html
  18. ↑ https://www.webmd.com/brain/autism/news/20100519/autism-famlies-high-divorce-rate-is-a-myth
  19. ↑ https://www.change.org/p/investigate-autism-speaks-for-unlawful-unethical-activity
  20. ↑ http://neurowonderful.tumblr.com/post/102907206441/a-long-sad-story-about-the-attitudes-that-autism
  21. ↑ http://autisticadvocacy.org/2012/11/protesting/
  22. ↑ http://autisticadvocacy.org/2014/08/asan-applauds-build-a-bear-ending-support-for-autism-speaks/
  23. ↑ https://www.psychologytoday.com/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle
  24. ↑ http://www.autreat.com/dont_mourn.html
  25. ↑ http://www.scope.org.uk/about-us/our-brand/social-model-of-disability
  26. ↑ http://www.autismacceptancemonth.com/
  27. ↑ https://www.facebook.com/doREDinstead/
  28. ↑ https://twitter.com/search?q=%23redinstead
  29. ↑ http://autisticadvocacy.org/projects/community/mourning/
  30. ↑ http://disability-memorial.org/
  31. ↑ http://autisticadvocacy.org/2012/04/killing-words/
  32. ↑ http://autisticadvocacy.org/home/projects/disability-community-day-of-mourning/anti-filicide/
  33. ↑ http://www.autismacceptancemonth.com/resources/
  34. ↑ http://www.thedp.com/article/2014/10/autism-speaks-penn-neurodiversity-problem
  35. ↑ http://autisticadvocacy.org/2014/06/asan-statement-on-autism-cares-act/

About This Article

LR
Written by:
Luna Rose
Community Expert
This article was written by Luna Rose. Luna Rose is an autistic community member who specializes in writing and autism. She holds a degree in Informatics and has spoken at college events to improve understanding about disabilities. Luna Rose leads wikiHow's Autism Project. This article has been viewed 72,121 times.
117 votes - 91%
Co-authors: 14
Updated: March 29, 2022
Views: 72,121
Categories: Autism Spectrum | Social Activism

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