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The Autism Speaks Controversy, Explained

Autism Speaks Inc. is the largest autism advocacy and research organization in the United States. Its status means that many are unaware of the controversy surrounding it . On the surface, it’s a nonprofit organization that seeks to provide support for individuals with autism and their families, raise awareness for autism, and further research on autism and its causes, but a deeper look takes a troubling turn.

Autism Speaks was first founded in 2005 by Bob and Suzanne Wright after their grandson was diagnosed with autism . The organization was kickstarted by a donation of $25 million from Bernard Marcus, the co-founder of Home Depot, who would go on to serve on its Board of Directors. Autism Speaks grew quickly as it merged with three other pre-existing Autism organizations including Autism Coalition for Research and Education, National Alliance for Autism Research, and Cure Autism Now.

Autism Speaks might sound appealing to individuals and families seeking to raise awareness or receive support. It’s an enormous and prominent organization, and it receives a high amount of attention and donations. It has been behind numerous public awareness campaigns, its founders advocated for the United Nations to recognize World Autism Awareness Day, and it claims to provide resources, services, intervention, and cutting-edge research for the autism community. However, Autism Speaks has received much criticism, especially from members of the autism community who urge others not to support the organization. Here’s why Autism Speaks is such a controversial organization.

Autism Speaks frames autism as a disease

The major reason Autism Speaks has received high-level criticism is because of how it views and frames autism. While they have changed their mission statement and campaign in recent years, Autism Speaks was founded on the idea that autism is a disease that needs to be cured. The organization’s original mission statement reads:

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.

Rather than focusing on raising awareness and advocating for the acceptance of autism in society, Autism Speaks treats it like a disease that needs to be cured or eradicated. Such a mindset increases the stigma and discrimination against people with autism as it presents the idea that there is something inherently wrong with them that needs to be fixed.

However, it has become increasingly clear that autism doesn’t need a cure. Contrary to what many misinformed individuals think, autism is not considered a disease or a medical condition. Jodie Hare, a member of the autism community, provides a strong definition of autism as “a neurotype that exists as a result of natural biological variation.” When autism is properly classified as a natural difference or variation instead of a disease or deficit, it prioritizes acceptance of those with autism rather than efforts to fix them. Many members of the autism community describe autism as a part of who they are and have reiterated the sentiment of wanting to be accepted, not cured.

Autism Speaks has promoted fear of autism

In addition to centering its focus on finding a cure for autism, Autism Speaks has also explicitly contributed to the stigma and discrimination surrounding autism by purposefully painting it as something to be feared. One of the most egregious things Autism Speaks has done was release a horrific 2009 commercial titled “I Am Autism.” In the commercial, “Autism” is an ominous narrator who makes chilling threats against families.

In the commercial, “Autism” states, “I work faster than pediatric aids, cancer, and diabetes combined and if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.” The narrator, speaking to parents of autistic children, also says that it derives pleasure “from your loneliness” and that it will “rob you of your children and your dreams” and make sure you “wake up every day and cry.”

The video was removed after backlash and Autism Speaks claims it is not part of their current message and campaigns. However, the damage was done the moment one of the leading organizations on autism released a video with horror film vibes, which demonized autism, portrayed it as a destroyer of families and livelihoods, and made it sound like something to be feared. A simple apology written on the FAQ section of their website and a promise of change can’t undo the immense damage that Autism Speaks’ horrific ad did.

Autism Speaks silences those with autism

What is also very odd is that the organization is titled “Autism Speaks,” but it has a history of not letting autism speak. Autism Speaks, from its inception to its present day, has been noticeably comprised of those who are not members of the autism community. In 2020 the Autistic Self Advocacy Network (ASAN) reported that of the 28 members of Autism Speaks’ Board of Directors, only one belonged to the autism community.

Autism representation has been scarce throughout Autism Speaks’ history. Additionally, those from the autism community who did gain administrative roles in the company didn’t come away with good things to say about it. John Elder Robison was the first individual on the autism spectrum to be “hired” by Autism Speaks. However, he recalled his role being greatly limited and regulated to merely making recommendations. Contrary to what was portrayed in the media, he didn’t consider himself an employee or spokesperson for the organization. He eventually resigned from his position in 2013 after Autism Speaks’ co-founder Barbara Wright made further egregious claims about autism destroying families.

Additionally, the ASAN also reported that Autism Speaks , in 2014, lobbied heavily against an amendment to the Autism CARES Act that would have required that federal boards like The Interagency Autism Coordinating Committee include members of the ASD community to give them a greater voice in the policy decisions being made about them. Needless to say, Autism Speaks has displayed a trend of not wanting to let the autism community speak and advocate for itself.

Where does Autism Speaks’ money go?

There is also some skepticism about what happens to all the money Autism Speaks receives. Tax forms have shown that Autism Speaks spends a significantly low amount of its funds on actually providing resources for and aiding those with autism and their families. Reports have suggested as little as 1—4% of their annual budget goes towards providing Family Services and their provision of family grants.

Meanwhile, a whopping 20% of their budget was dedicated to fundraising. Something certainly doesn’t seem to add up when 20% of your budget goes towards fundraising, but as little as 1% goes towards actual charitable activities and funding. Meanwhile, a large portion of their funds also goes towards research. In its early years, the organization was researching a cure for autism. Now, a lot of their research is focused on developing prenatal testing , so autism can be detected in the womb and the pregnancy terminated, and furthering their controversial Applied Behavior Analysis (ABA) therapy . Very little of their research is dedicated to helping or improving the lives of those with autism.

Autism Speaks has also been found to pay its top executives over $600,000 annually for compensation . There’s no set number for what a nonprofit CEO’s wage should be, but most can agree that a yearly salary of $600,000+ seems excessive.

Has Autism Speaks changed?

Many of Autism Speaks’ most damaging actions, such as trying to “cure” autism and its “I Am Autism” video, took place years ago. In the years since, they have dropped the word “cure” from their organization, rewritten their mission statement, and claim to no longer associate with their earlier ideals. However, it’s clear that, under the surface, they haven’t changed much.

As recently as 2019, Autism Speaks debuted its controversial “100 Day Kit.” They used the autistic Muppet Julia on Sesame Street to promote the product, which led to the ASAN cutting ties with the show. The 100-Day Kit was meant to give direction and advice to parents of children who have been recently diagnosed with autism. Instead, it compared autism to leukemia and encouraged parents to mourn and grieve their child as if they had died after receiving an autism diagnosis.

Additionally, the organization continues to lack autistic voices on its board, spends its funds questionably, and continues to adhere to the ideals of its founders, which is that autism is a disease. While they stopped trying to “cure” autism, they’ve instead switched to trying to prevent those with autism from being born. Historically, Autism Speaks has done much more to stigmatize autism than they have done to advocate for acceptance or provide much-needed resources for the ASD community and their families.

(featured image: Autism Speaks)

A Reporter's Guide to the Autism Speaks Debacle

The autism speaks summit sends the autism world into an uproar..

Posted November 14, 2013 | Reviewed by Ekua Hagan

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Autism Speaks is well-funded and influential, and its blue puzzle piece icon has come to symbolize autism. The organization is also stubbornly emblematic of the divisions within what I will call (somewhat desperately and inadequately) the autism community.

What was the occasion?

At the “Autism Speaks to Washington” Policy and Action Summit in Washington D.C., the organization pitched its advocacy strategy and research updates.

What was the trigger?

The day before the summit opened, Suzanne Wright, who co-founded Autism Speaks in 2005, published this commentary: " Autism Speaks to Washington—A Call for Action ." She described autism as an unmitigated disaster for families, consistent with her organization's established message. Advocates point out that this message stigmatizes and contributes to the exclusion and abuse of autistic people. In addition, as self-advocate Lydia Brown observed , the exhibitors at the resource fair of the Walk Now for Autism Speaks event in DC (November 2) included the Judge Rotenberg Educational Center, an institution notorious for its extreme abuse of disabled students.

What did the triggers trigger?

The Autism Women’s Network and the Autistic Self-Advocacy Network flooded Wright’s column with critical responses.

Jess Wilson, author of the popular blog A Diary of a Mom , renounced the organization , describing her futile attempts to move Autism Speaks towards a more respectful and inclusive message, and Wright’s physical interaction with Wilson’s young daughter against the girl’s objections.

John Elder Robison, author of Look Me in the Eye and Raising Cubby , and a Psychology Today blogger , resigned from the Science and Treatment boards at Autism Speaks. He had been the sole openly autistic person associated with the organization. “Autism Speaks has accomplished internally what it wishes to accomplish worldwide: zero autistic people," the self-advocate and blogger Brigianna Spencer observed [see below]. Update: Kerry Magro , the social media / marketing coordinator at Autism Speaks, is openly autistic, as is Amy Gravino , who volunteers on the Communications Committee. Apologies for the inaccuracy.

Others have withdrawn from Autism Speaks events, including a walk this weekend , and have ended their financial support . Seemingly hundreds of autistic and ally bloggers and commentators have reiterated their disgust with the organization and emphasized that it does not speak for them .

Surely Autism Speaks is all about working with people like them?

The organization is dominated by parents of autistic children, whose agenda can conflict with that of autistic people themselves. Self-advocates point out that an advocacy autism organization without autistic people is Autism Gagged, as troubling as a whites-only organization that purports to address racism or a men-only panel on sexism.

What’s the agenda of autistic people?

Appropriate, well-targeted services that enable autistic people to live more autonomous lives. In 2010, Autism Speaks spent just 4 percent of its budget [pdf] on services for autistic people, according to the Autistic Self-Advocacy Network. As John Elder Robison, referring to the need for support, pointed out, “the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised.”

How then does Autism Speaks spend its money?

“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism,” its website announces. Most controversially, that includes an emphasis on prenatal testing. Many autistic self-advocates claim that the organization has a eugenics-based mission and its goal is an autism-free world . Wright herself has publicly anticipated a future in which autism is "a word for the history books. "

But isn't autism a problem?

Autism comes with challenges, which are amplified by society as we know it. But autism also comes with advantages. Imagine an autism-free world. Inoperable rail systems. The abandoned, rusting remains of Silicon Valley. Distressed cows . Incomprehensible data. No one to blame for humanity’s ongoing empathy deficit.

There must be an upside to Autism Speaks?

Some decent, well-intentioned people are associated with the organization. They have been instrumental in, for example, passing state legislation requiring fully-funded health insurance plans to cover therapies for autistic children, including in Massachusetts, my own state. Some might still seek to reform the organization from within.

What’s the fall-out so far?

Less support for Autism Speaks, though for now, we can only guess its impact. A Diary of a Mom has sympathetically addressed the families who defend Wright’s description of autism. John Elder Robison has expressed his concern that the autistic and scientific communities remain too far apart.

You’re not neutral.

Who is? Instead of eliminating autistic people, let’s seek to understand the complex interactions of genetic and environmental factors that can cause people to undervalue and marginalize others.

Where can I go for a quote that represents autistic people?

The Autistic Self-Advocacy Network is a nonprofit organization run by and for autistic people.

The Thinking Person’s Guide to Autism is “a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.”

The Autism Women’s Network is an inclusive community of "autistic girls and women, their families, friends, and supporters."

GRASP is an Asperger's -focused organization in which the Executive Director, 100 percent of the Advisory Board, and 50 percent of the Board of Directors are diagnosed autistic.

The Asperger’s Association of New England was established to address what was then an absence of supports for autistic people with language who did not need intensive care. [Disclosure: I’m on the Board of Directors.]

Which autism organizations would spend my donation on supporting autistic people?

All of the above are good candidates.

Lucy Berrington is a Massachusetts writer and the parent of a teen with Asperger syndrome. She serves on the Board of Directors of the Asperger's Association of New England.

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Insights from life on the spectrum

What’s Wrong With Autism Speaks?

As probably the most well-known autism “advocacy” group in America, it’s understandable that parents or adults facing a new diagnosis might go to Autism Speaks for information and assistance.  But if you spend any time in the autistic community, you’ll soon find out that they are neither respected nor appreciated, and with good reason. 

The story that made me realize Autism Speaks was not to be trusted came from  Diary of a Mom .  I can no longer find the original post, but it’s quoted in the link above, about halfway through the post.  It was just a quick vignette, the story of how Suzanne Wright, founder of Autism Speaks and grandmother to an autistic person,  grabbed an autistic child’s face and forced the girl to look at her .  You should never touch another person’s child that way to begin with, and you absolutely do not forcibly grab an autistic child.   

That quick story told me all I needed to know: the founder of this group has no respect for autistic people and treats them like objects without any feelings or humanity worthy of consideration. 

I didn’t need any more convincing, but there’s plenty more to tell. 

Fear mongering

Let’s start with the horrific ad spot, “I Am Autism”.  I won’t link it here because I don’t want to even give them rage clicks, but it’s available on YouTube if you want to see it for yourself.  Personally, I’m hard pressed to call it anything other than hate speech and propaganda. A menacing voice, identifying itself as “Autism” threatens parents with statements like “I will make sure your marriage fails”, “I will bankrupt you for my own self-gain”, “I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain”, and of course, “I will fight to take away your hope.  I will plot to rob you of your children and your dreams.” 

Ignoring autistic voices

John Elder Robison , author of  Look Me  In The  Eye  and several other books, was the only autistic voice when he served on the Science and Treatment Boards of Autism Speaks.  In 2013, after years of trying to steer the organization in a more respectful, truly advocating direction, he resigned.  In his  essay announcing his resignation , he says: 

“I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people.  We do not like hearing that we are defective or diseased.  We do not like hearing that we are part of an epidemic.  We are not problems for our parents or society, or genes to be eliminated. We are people. 

The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community.  Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions.  The priority cannot be autism parents, or autism grandparents.  It’s got to be actual people with autism.”  

That’s another point that rankles many in the autistic community.  Autism Speaks has, throughout its existence, focused almost exclusively on the needs and struggles of parents and families of autistic people.  What programs and services they offer are focused on making life easier for the long-suffering parents and siblings of autistics.  They have done little to help actual autistic people, more often acting as though we were merely baggage that our parents carted around out of obligation – and those parents deserved sympathy and help to deal with us.  

Sketchy associations and practices

Autism Speaks also has a long history of questionable practices and associations.  According to the  Autism Self-Advocacy Network , less than 5% of the organization’s budget goes to programs to help families, with roughly 20% spent on fundraising and over 40% dedicated to lobbying and “awareness”.  For most of its history, the organization has been deeply ensconced with the anti-vaccination movement and other adherents of dangerous fringe theories.  However, to its credit, the organization’s website now specifically denies any link between vaccines and autism.     

Autism Speaks has also promoted the Judge Rotenberg Center, which is the only institution that still legally uses electric shocks on its disabled residents.  In January 2019, the FDA announced  “plans to ban”  that practice by the end of the year.   

Stealing an autistic person’s work

In what might be the most egregious example of disregard for the rights of autistic people, Autism Speaks used an out of context quote by an autistic woman who protested against them, without any permission and without proper attribution.  When she called them out, they lied, took it down, and then put it right back up as if they had done nothing wrong.  The misattributed, context-free, misapplied quote appeared on the Autism Speaks website off and on through at least January 2014.  You can read the  full account here .  

A mission to find a “cure”

The original mission statement of Autism Speaks specifically included language about being “dedicated to funding global biomedical research into…a possible cure for autism.”  This bothers many of us in the autistic community because it implies a genetic “cure”, which would effectively eradicate us by eugenics.  The language about a “cure” was removed in 2016, replaced with language about “a spectrum of solutions”.  About the same time, they finally added two autistic people to their Board of Directors, Dr. Stephen Shore and Dr. Valerie Paradiz (it should be noted that as of March 2019, Dr. Paradiz is not found on the Board of Directors page on their website).  Supposedly, there has been a lot of change in the organization, but time has not shown much as yet. 

We deserve better

This is just a sampling of the reasons the autistic community does not like or trust Autism Speaks.  For a larger roundup of stories explaining the problems with that organization, you can check out  this post at Medium .  Since its founding in 2005, Autism Speaks has felt that they have the right to speak for us, rather than listening to us.  They have demonized us, told us that we are burdens and tragedies, and then said to our faces that we don’t really understand what they’re saying about us.  Well, we do understand, and we demand and deserve to speak for ourselves. 

Nothing about us without us. 

Do you have any experiences with Autism Speaks you’d like to share?  Have you found evidence that things are getting better since the big changes in 2016? 

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clock This article was published more than  4 years ago

The biggest autism advocacy group is still failing too many autistic people

Autism speaks adopts all of the language of diversity. but its actions don’t match up..

This article has been updated to reflect several corrections. Autism Speaks did not “assert” that autism destroys parents’ lives. Its tool kit for parents does not say grieving is an “inevitable” consequence of their child’s diagnosis. A paragraph describing the organization’s spending on research to find an autism cure was not correct and has been removed.

Autism Speaks celebrated its 15th anniversary this week with a colorful new logo to replace its traditional blue puzzle piece. In a video, the organization said it was “sharing a new, more inclusive Autism Speaks” that represented “the infinite diversity of perspectives and experiences of people with autism.” On the surface, including many diverse voices and acceptance of autistic people seems nice. The problem is that Autism Speaks has actively contributed to the hostility that autistic people face.

Obviously, the organization did not create that hostility, which has caused great suffering. But as the largest nonprofit related to autism, it spent years promoting ideas and information that furthered stigma and misunderstanding about the condition. In 2009, Autism Speaks released an ad titled “ I Am Autism ” that portrayed autism as a silent and sinister killer. The ad claimed that autism “works faster than pediatric AIDS, cancer and diabetes combined” and ensures that marriages will fail , financial ruin will ensue and that it will “rob [parents] of [their] children and dreams.”

Autism Speaks has run high-profile advertising and fundraising campaigns suggesting that autism is a malevolent force that afflicts families and makes parents miserable. A few smaller groups, like Cure Autism Now and Defeat Autism Now! predated Autism Speaks, but none have had its massive budget and wide reach. The narratives about autism that Autism Speaks has put forth have defined and shaped autism in the public imagination.

Toxic parenting myths make life harder for people with autism. That must change.

Autism Speaks’ goals have seemed to change little. Last summer, it partnered with “Sesame Street ” to promote a tool kit for parents of newly diagnosed children that, among other things, compares autism to leukemia and suggests that mourning is a normal response to learning of an autism diagnosis. There is an entire section of the tool kit that walks parents through the Kubler-Ross stages of grief: denial, anger, bargaining, depression and acceptance.

“Many parents must mourn the loss of some of the hopes and dreams they had for their child before they can move on,” the guide notes in the section on sadness. Autism is neither a degenerative nor a fatal condition. No one dies of autism. But the rhetoric in the tool kit made autism diagnosis sound as though a child has died.

According to its most recently available annual report , a little less than half of Autism Speaks’s budget of more than $50 million in 2018 went to “awareness” campaigns and lobbying. Autism Speaks has consistently stood against autistic empowerment and self-advocacy on Capitol Hill. In 2014, the Autistic Self-Advocacy Network said Autism Speaks lobbied heavily to kill an amendment to the Autism Cares Act that would have set benchmarks for the inclusion of autistic people in the research and policies that affect their own lives. The Autism Cares Act gives billions of dollars to provider organizations and nothing to autistic-led organizations, services or quality-of-life improvements. The most recent reauthorization of the bill, signed by President Trump, allocated $1.8 billion.

This is a time of growing acceptance of the concept of neurodiversity, the idea that autism and other neurocognitive disabilities are natural differences rather than afflictions. Dozens of major corporations, including SAP, Goldman Sachs and Ernst & Young, have launched “Autism at Work” initiatives, to promote employment of autistic people in the technology sector.

Hiring neurodiverse people like me can give companies a competitive advantage

At the same time, more autistic adults have argued that they need to be at the center of any policymaking that affects their lives. This contrasts with Autism Speaks, which was founded by Bob and Suzanne Wright when their grandson was diagnosed with autism. The objectives of the organization have largely involved serving families — they have resources for parents, siblings and grandparents, but little for autistic people. The changes in rhetoric are meant to show that it is responding to shifts in society’s understanding of autism. But the attempt to appropriate the aesthetics of neurodiversity without changing conduct or content comes off as oblivious and craven.

Autism Speaks’s new logo, which now includes a rainbow gradient instead of the organization’s traditional blue, is meant to “embrace the diversity” of the autism spectrum. Since the 1990s, the symbol of neurodiversity has been an infinity symbol with a rainbow gradient for exactly that reason. But Autism Speaks does not acknowledge the connection in any of the materials it has released promoting its new, more inclusive look.

Similarly, Autism Speaks said it will use “identity-first language” in its materials going forward — saying “autistic people” instead of “people with autism.” It cited a poll last year on social media as the reason for the change. But again, the organization is decades behind much of the autistic adult community; in 1999, before Autism Speaks was founded, one of the founders of the neurodiversity movement, Jim Sinclair, wrote an entire essay about preferring identity-first language . Its change of heart came not because of a decades-long push for change by autistic advocates and organizations, but because of a Twitter poll.

To those outside the autism world, this may seem like an insignificant semantic difference. But it represents how Autism Speaks has had a monopoly on how people discussed autism and how it made a concerted effort to dismiss and disregard the opinions of autistic adults who have had the temerity to speak for themselves.

Autism Speaks has chosen to embrace the aesthetics of neurodiversity without adopting its principles in any meaningful way. It wants to talk about inclusion and acceptance while continuing to fund and promote precisely the opposite, and do it without acknowledging or crediting anything neurodiversity advocates have said or done for the past 30 years. Without even apologizing for the damage it’s done. To quote Autism Speaks’s latest campaign slogan: “Kindness counts.” But while kindness counts, listening and understanding can go much further.

Disability Rhetoric

Fall 2021 – english 401: seminar in writing and rhetoric.

A Disability Studies Analysis of Autism Speaks

Artist’s Statement:

The results of the research I conducted for this piece was far more shocking than I ever expected when I sat down to write it. Before looking into the organization Autism Speaks’ rhetoric and representation of autistic people on their website, I knew there would be issues. Autistic communities everywhere denounce this organization as a hate group but I did not realize how sinister their practices really were until I began to analyze their positions through a disability studies lens. As an autistic individual myself, I have a tendency to miss subtext and take the words of people and organizations at face value. What I found is that Autism Speaks wants people to take their word at face value and assign them authority over how autistic people need to be treated. However, because much of my piece is snapshots of tweets from autistic individuals around the country who have been hurt by their practices, my hope is that those who interact with Autism Speaks will begin to see through their façade of supposedly compassionate practices which hide their radical commitment to eugenicist ideology. One of the issues I’ve found with academic research is the lack of colloquial jargon that would allow everyday people to access the information presented. This is why my inclusion of these tweets from autistic people are so central to this piece, because when disability studies can be learned about and understood in familiar terms, it can then also reach far more people than it would have otherwise.

by Rachael Howson

The organization Autism Speaks was “founded in 2005 by Bob and Suzanne Wright after their grandson was diagnosed with autism” (Henkel). When considering these details about the origins of this institution, it makes sense that today none of the board of directors of this advocacy group are autistic, with nearly all of them either having family members who are autistic, or have no publicly recognized association with individual autistic people outside of those they market treatments and services to. This distinction is important because through the creation of their advocacy group, they centered the perspectives of neurotypical people, or non-autistic people in their advocacy instead of centering it around the voiced needs of autistic people themselves. Naturally, because the board of directors have no personal experience with autism, the aspect of their mission that states that they want to “increase understanding and acceptance of people with autism” in the world is unqualified because they themselves do not understand and accept autism in the way advocacy groups formed by autistic individuals do (Our).

This aspect of the organization’s leadership is no coincidence nor simply a byproduct of its origins. In fact, the career section of the Autism Speaks website clearly defines the organizations workplace culture and a specific list of “five core competencies” expected of employees if they are to contribute to the organization. These competencies include, building collaborative relationships, professional behavior, results driven, customer orientation, and flexibility. While characteristics might seem like easy to embody characteristics to non-autistic people, the organization is pointedly excluding autistic people who among other criteria are usually characterized as having social deficits including communication, lack of eye contact, “difficulty reading facial expressions and body language, difficulty understanding the rules of conversation” and group dynamics among others (Common). Likewise, autistic people are known for cognitive rigidity which presents as literal and absolute thinking, black and white expectations, “rules with little interpretive room, and a preference for predictability” and strict routine (Cognitive). As an organization that claims to strive to help autistic people, they should be one of the most autistic-friendly environments for autistics to work in. However these requirements are blatantly anti-autistic and exhibit the same ableist practices that these autistic twitter users describe as inaccessible work environments in a thread about having to choose to leave or losing a job due to a workplace that was not autistic-friendly:

ALT: Tweet from @17shadesofpurple “I lost two jobs that I was fantastic at. I was told flat out that I wasn’t a good fit “socially” and they had to weigh that against my top performance. Guess what won. Both times.”

ALT: Tweet from @Beczabu “Can’t handle the constant noise and rowdiness of co-workers. Makes me want to run and hide. And they seem to love making me feel bad about myself.”

ALT: Tweet from @pippa_louise “Yep. More than 18 jobs in 11 years and it’s impossible for me to work as I never last more than 3 months. For me it’s a lot of things that overload me but mainly social relationships I struggle massively with x.”

Along with their workplace intolerance for autistic people, another key facet that sets Autism Speaks apart from effective autistic led organizations is that they adhere strictly to the medical model of disability. The medical model sees disabilities as a defect within an individual’s body or mind that can be diminished or corrected through medical intervention, and emphasizes the importance of treatments and intervention for autistic people so as to address the “specific needs of each individual.” This is shown from their use of the smallest objectionable choices like the organization’s use of the phrase “people with autism,” to their larger offenses such as their unrelenting support of ABA therapy, which has been proven to cause PTSD in autistic people. The non-profit organization and publication “NeuroClastic,” which supports autistic people and their families through cataloguing “the experiences, insights, knowledge, talents and creative pursuits of autistics,” has stated publicly that Autism Speaks is a hate group (Bettin):

ALT: Tweet from NeuroClastic “Autism Speaks is a hate group. They have done and continue to do irreplaceable harm. They know the statistics about autistic suicide rates. They don’t care. They’re still pushing autistic conversion therapy which contributes to devastatingly high autistic suicide rates.”

When considering Autism Speaks’ use of the phrase “people with autism,” understanding that person-first language is a “linguistic prescription which puts a person before a diagnosis” and is “intended to avoid marginalization or dehumanization when discussing people with a chronic illness or disability”  is essential (Person). In many situations when referring to people with disabilities, person-first language is seen as the preferred etiquette in order to show respect to the humanity of those being referred to. Therefore, many would believe that this convention should also apply to autistic individuals. However, disability first language, which is in direct opposition to person-first language, is widely seen in the autistic community to be preferable. This is despite person-first proponents’ claims that ingrained ableism often leads to people seeing a person’s disability before their humanness, which is why person-first language is necessary. Autism Speaks abides by the person-first perspective despite the widespread agreement from the autistic community that “Autism is not an appendage…. autism is a way of being,” which Jim Sinclair states in his piece, Don’t Mourn for Us. Therefore the idea that autism is “an alternative neurology which reflects humanity’s natural neurological diversity, not as a mental disorder” leads to the conclusion that autism shouldn’t be described as something that a person has (Howard). Autism Speaks’ language implies that autism can be separated from the individual despite public backlash, which directly aligns with their ultimate goal of teaching autistic people how to be neurotypical in order to find “solutions” for their autism, under the guise of helping them “reach their full potential” (About). It should also be noted that their use of the term “solutions” only appeared in their mission statement in 2016, after public pressure to remove the word “cure” from their vocabulary regarding autism. 

Expanding upon Autism Speaks’ perspective on “solutions” for autism, their statement that “Autism Speaks’…. public service advertising campaign stresses the importance of recognizing the early signs of autism and seeking early intervention services” and “Appropriate screening can determine whether a child is at risk for autism as young as one year”  is particularly revealing of their commitment to the medical model of disability (Learn). This framing of autism as something that must be stopped in its tracks lest it overcome the “normal child hidden behind” their disorder shows the organization’s lack of awareness of how the autistic community advocates for the wider culture to understand and treat them (Sinclair). Under the organization’s section labeled “Learn the Signs of Autism,” they has a list of qualities that indicate autism in children of all ages including but not limited to “loss of previously acquired speech, babbling, or social skills,” “unusual and intense reactions to sounds, smells, tastes, textures, lights, and/or colors,” “restricted interests,” “avoidance of eye contact,” and “resistance to minor changes in routine or surrounding” (Learn). When describing autism through the medical model of disability, these kinds of negative traits come to the forefront as necessary for making a diagnosis because the medical model requires “deviation from the norm” as qualification for disability. However, if organizations like Autism Speaks wanted to actually improve the lives of autistic people, they would take inspiration from groups like “NeuroClassic” which work to adapt the social model of disability to neurodivergent labels instead of researching how best to mold them into caricatures of “normal people.” The social model functions on the idea that “the problem is not in the child and their impairment, but in the social and attitudinal barriers” produced and enforced by the society in which they live (Social). As explained by “Brooke Winters” on twitter, disability does not lie within the individual, but within the environment.

ALT: Tweet from @brookewinters23 “The social model of disability defines being disabled as something that happens when accommodations aren’t made and environments aren’t accessible. Autistic people are not disabled by autism. We are disabled by an inaccessible world. Autism is not a disorder.”

As an example of their adherence to the medical model is the organization’s research goals. Under their Research Programs section of the website, Autism Speaks lists these goals, the top one being “seek the causes and types of autism.” Underneath this, they highlight the database called MSSNG (pronounced as “missing”) that was created as a collaboration between Autism Speaks, Google, and the research community “to create the world’s largest genomic database on autism” (MSSNG). This database holds the genetic information donated by over ten thousand people and families “affected by autism.” Autism Speaks’ reasoning for creating this collaborative project is “to speed the development of more effective and personalized interventions for autism and its associated health conditions” (Hand). This approach of Autism researching how genetic intervention could be utilized in the future once research by MSSNG has enough evidence of specific autistic genes is highly reminiscent of the United States’ history of involuntary sterilization of disabled people pushed by the eugenics movement which acquired considerable momentum in the early 1900’s. While Autism Speaks has stated that they do not support eugenics, with no further elaboration, it should be noted that eugenics is defined as “a set of beliefs and practices that aim to improve the genetic quality of a human population” (Eugenics). Instead of sterilizing autistic people, they are using the donated genetic information to uncover the genetic causes of autism so that they may be edited or eliminated as a form of “intervention.” This goal of identifying autistic genes would also be used by parents to select embryos without the genes as put forward by Doctor Diana S. Fleischman, a psychologist and professor at the University of New Mexico whose field of study include the study of disgust, human sexuality, and hormones and behavior. It is the view of Doctor Fleishchman and many of the other researchers that fighting neurodivergence at its root rather than having to treat autistic people after they are born is a more effective solution, by removing neurodivergence from the gene pool as described by “myk says ho ho ho” on twitter. 

ALT: Tweet from @mykola “Apparently people are down with removing adhd from the gene pool. You can bet how this person and her followers might feel about autism. This is why google’s MSSNG project is so awful, because these fuckers would really do it.”

In response to tweet from @sentientist “Say, for the sake of argument, that Lisa has a form of attention deficit that has a specific genetic basis. She struggles to focus for long periods. Lisa does IVF and chooses and embryo that doesn’t have this genetic deficit to implant. What do you think of what Lisa did?”

However, the autistic community widely recognizes this as a form of genocide particularly because autism is becoming more commonly understood to be a “‘neurological culture group’ than a social disorder or a disability” as stated by “Autvntg” on twitter:

ALT: Tweet from @autvntg “I am of the opinion that…. it is more useful to view autism as a sort of neurological cultural group than as a social disorder or a disability. Autism, cures, genocide.”

The term “genocide” usually refers to the destruction of an ethnic, national, religious, or racial group. However, the destruction of disabled people have always been a key feature of genocides targeted towards these listed types of group. For example, during the Third Reich, Austrian pediatrician Hans Asperger who studied autism and eventually had “Asperger’s Syndrome” named after him was crucial part in the genocide of autistic individuals during the Nazi Regime. His job was essentially to sort the autistics into two groups, the intelligent and useful one who would be later classified as having Asperger’s Syndrome, and the others autistics who were considered genetically inferior because they were unable to perform labor or were seen as incapable of social conformity, and so were referred by the doctor to Vienna’s Am Spiegelgrund clinic which was a center for child euthanasia. “Asperger supported the Nazi goal of eliminating children who could not fit in with the Volk : The facist ideal of a homogeneous Aryan people” (Baron-Cohen). Partially because of his Nazi affiliations and recent studies that reject the differentiation between Asperger and Autism, members of the autistic community on twitter such as “Ghost of Bumplings Past” beg that the wider community stops using the term Aspergers. While Autism Speaks’ no longer uses this term to describe any of the individuals they treat because of public pushback, it should also be remarked that the differentiation is no longer useful to the organization. Now that they have the ability to receive genetic information from donors, they no longer need to rely solely on research recorded during in person medical evaluation post-birth, to decide whether the autistic individuals’ families would be better off without them as Hans Asperger did. 

ALT: Tweet from @Not_CharLatte “reminder that the Autistic community is begging you to stop using the term Aspergers. Hans Asperger was a Nazi who experimented on Autistic children. Aspergers because the term for folks on the spectrum who were able to work and therefore “didn’t deserve to immediately die.”

In regards to an ever growing autistic community whose collective neurotype is considered worthy of destruction by this more potent form of eugenics, an understanding that a culture is defined by “the behaviors and beliefs, characteristics of a particular group of people” becomes especially important as Autism Speaks continues to push their belief that environments do not need to be changed to increase accessibility, but instead that autistic people need to change in order to fit their environment more effectively. Their primary tactic for spreading this belief is through their preferred treatment called Applied Behavior Analysis or ABA therapy, which is on the top of Autism Speaks’ list in their treatments and interventions section of the website.   

Therapy can be defined as either “the treatment of a disease or disorders, as by some remedial, rehabilitative, or curative process” or as “any act, hobby, task, program, etc. that relieves tension.” These two definitions are important because what the autistic community refers to as “stimming” refers to “self-stimulating behaviors, usually involving repetitive movements or sounds” is widely proven to be a “protective response to overstimulation, in which people calm themselves to block less predictable environmental stimuli” (Stimming). Stimming therefore, is a form of therapy, and yet Autism Speaks’ promotes a type of therapy more akin to conversion therapy to correct this naturally therapeutic behavior exhibited by autistic people because it is seen as abnormal behavior. When autistic people are not allowed to stim, which is an essential emotional regulatory tool for many autistic, oftentimes internal tension builds until the individuals are forced to relieve said tension through other less healthy means such as self-harming or depersonalization as described by twitter user “Alice (ae/aem)” in response to their experience with ABA abuse where their adopter refused to allow them to engage with any stimuli that lead to the performance of autistic traits:

ALT: Tweet from @TheHorrorOf97 “My adopter was a psychologist. He took my most compelling things away. Music. Toys. All to try and force behavioral changes. What happened? I started to develop sever depersonalization and started self harming cuz I was using toys and music to stim, and they were seen as fun.”

ABA Therapy has been widely documented as harmful to autistic people because it teaches them to “hide sensory pain, and increases the likelihood of PTSD and suicidality in autistic people.” The goal of ABA therapy is to decrease problem behaviors, and increase desired behaviors through positive reinforcement whereby approved behaviors are encouraged by offering a reward as a stimulus. As stated by “art twink” on twitter, this form of therapy leads to immense guilt in individuals when they care for their needs without first doing something deserving of a reward:

ALT: Tweet from @art_twink “You know what ABA gave me? Immense guilt every time I give myself a “reward” without completing a task first. And by rewards I mean things like going to the bathroom, eating, doing anything other than keeping my body Very Still.”

When compared to effective dog training tactics, it is clear that they “largely stem from the same principles- teaching children or dogs to behave in a desired manner” such as in the case of giving a dog a treat for sitting down or rolling over (Natasha). The only difference is that most dog training tactics recommend a person first remove the pet from the environment that is causing them stress, whereas ABA therapy forces autistic people to endure those environments and ignore the stress signals they produce, which often leads to autistic masking. This goal of teaching autistic people how to pretending to be neurotypical, or from the perspective of the therapist- having the autistic child understand how and why they must not act on their autistic traits- stems from the assumption that the “children simply won’t do things and need to be incentivized” rather than assume that “autistic kids can’t do what they’re asking them to do” or understand that “what they’re asking them to do is painful” (Why). As explained by twitter user “E”, this type of therapy is nothing more than a legal form of human obedience training.

ALT: Tweet from @QueerDeaf “#SayNoToABA because I was a DEAF child who had my HANDS taped together for stimming. You cannot convince me it isn’t abuse/all about controlling another human being to the fullest extent without consequences. #ActuallyAutistic #AutisticPrideMonth”

Part of the reason why ABA therapy is so widely used is because autistic traits are seen as unexplainable to neurotypicals, and therefore meaningless, though autistic people have written at length about the meanings and reasons for different autistic behaviors. This narrative that autism is an inherently mysterious, puzzling, and complex disorder is why the blue puzzle piece logo created by the Autism Society of America has lasted so long as a symbol for autism, which Autism Speaks continues to utilize. The puzzle piece is also representative of Autism Speaks’ commitment to searching for answers, or to find the key piece of the puzzle that will make autism make sense to non-autistics. Likewise, the color of the puzzle piece is indicative of the higher rates of diagnoses of male autistics than female autistics because the criteria for the diagnosis was based on how it appeared in males rather than how it presented in everyone on the gender spectrum which led to a gender bias which also led to the assumption that autistic males are considered “more autistic” than autistic females (Crosman). As explained by twitter user “Shelby James Champion,” even if the puzzle piece logo began as a albeit misguided way for neurotypical people to respect the complexity of autism and was used as a symbol for positive research, now that it is close to solely associated with Autism Speaks, the symbol is widely regarded as having no use to the autistic community because of its tainted history.

ALT: Tweet from @shelbyjchampion “The reason I passionately dislike the puzzle piece symbol is because it categorizes us as “mysterious” or “puzzling”. It is largely associated with the infamous organization Autism Speaks. I had a very bad experience growing up with that organization.”

With the immense levels of misrepresentation and ableist rhetoric about autism that Autism Speaks puts into the world, it becomes necessary to recognize who their intended audience is and why this audience has allowed the organization to receive millions of dollars in donation every year. This specific audience which is widely discussed in autistic circles are the so-called “Autism Martyr Mommies” who present themselves as victims or celebrate themselves for being able to raise an autistic child who are regularly described as far much more difficult to raise than non-autistic children. While Autism Speaks also advertises to other groups of people for financial support, the community support created by mothers of children with autism through message boards, clubs, and social media groups is unparalleled. This demographic is useful to cater to because mothers traditionally expected to be the parent who deals with the medical matters of their children and has the most concern for their health, safety, and wellbeing. Therefore when an organization like Autism Speaks recommends that parents scrutinize their children for seemingly concerning signs of autism such as “little to no warm, joyful, engaging expressions, little or no babbling, and little or no response to name,” which could present themselves as early as a few months old, these caring mothers react to the organizations’ fear-mongering just as the organization intends, by viewing Autism Speaks as the authority on how to best care for their disabled child. 

Likewise, this choice of audience leads to an overemphasis on the voices of caregivers in regards to the wellbeing and needs of disabled individuals as a whole which in turn gives the organization more authority as one of the the leading researchers into Autism Spectrum Disorder despite none of the organization’s board member’s being autistic, as mentioned earlier. Disability rhetoric is centered around who has power in conversations about disability, and just like with issues about race, class, gender, and other societal power dynamics, those who are in control of the narratives surrounding these issues are the ones who will be most able to exploit them and the marginalized groups whose voices are left behind. As twitter users “Liz Both Dinosaurs Bernstein” and “Ultra Violet Rae” explain, organizations who care more able the parents of autistic individuals than the autistic people themselves continually silence them despite their supposed goal of advocacy, which is more often than not a front for money-grabbing and eugenics propaganda.

ALT: Tweet from @yeralizard “Sooo many organizations and individuals that purport to advocate for autistic people yet continually silence us when we criticize them just prove more & more that they care more about autism martyr mommies than they do about us.”

ALT: Tweet from @UltVioletRae “Glob give me the patience to survive the autism mommies during the rest of autism month. The audacity. The victimhood. The eugenics. The torture as treatment. This month is supposed to be for us, yet they make $ for eugenics off our struggles, and silence us. Nauseating.”

In the faceoff against organizations like Autism Speaks, the question boils down to, how can communities center autistic voices in order to create accessibility within schools, workplaces as well as remove the veil of inaccurate, ableist rhetoric that surrounds conversations about autism. How can our world be changed so that autistic individuals are not harassed, abused, manipulated, and controlled by others on the basis of the way they function as a representative of their neurotype? How can the rhetoric that infantilizes autistic adults, assumes certain capabilities and a lack of other capabilities be changed so that neurotypical people respect autistics as much as they would other non-autistics? 

“Corvid Working on comms” says to stop lighting it up blue for Autism Acceptance month, and supporting organizations like Autism Speaks. 

ALT: Tweet from @corvidcactus “small doodle because today is #WorldAutismDay and #AutismAcceptanceMonth. I’m autistic. please do not “light it up blue” or support orgs like autism speaks. listen to and uplift autistic voices. acceptance is more important than awareness. #ActuallyAutistic”.

“Punny and Pup” says to stop supporting films and media that advertise unsafe methods of helping autistic people regulate themselves and do not try to educate yourself about autism through popular media.

ALT: Tweet from @pupkittyfan1: Sia’s film about autism is very dangerous, in the movie the autistic character is restrained and held down, this method is very dangerous and can harm Autistic ppl when they’re having a meltdown. Many Autistic ppl have spoken against this movie so please listen to our voices.”

As “Sarah Boon #StopTheShock” says, believe those around you who confide in you the possibility that they are autistic regardless of your level of understanding or awareness of the neurotype and their behavior. 

ALT: Tweet from @Saraheboon “Hi, I am an autistic woman (yes we exist). Autism is often misrepresented in the media dramatically, which was one of many reasons why I didn’t get diagnosed until 24. Please listen/empower autistic voices when it comes to representation.”

Lastly, as “Kyle” says, listen to the autistic individuals in your life and at all costs, do not speak over them.

ALT: Tweet from @TigerDropped “Good morning and happy #AutismAwarenessMonth. As someone on the autism spectrum who was diagnosed when I was 14, I send nothing but love & support to my fellow autistic people. Remember to listen to our voices & don’t speak over us. And daily reminder: fuck Autism Speaks.”

Works Cited

“About Us.” Autism Speaks , https://www.autismspeaks.org/about-us. 

Alice (TheHorrorOf97). “My adopter was a psychologist. He took my most compelling things away. Music. Toys. All to try and force behavioral changes. What happened? I started to develop severe depersonalization and started self harming cuz I was using toys and music to stim, and they were seen as “fun”. 1 May 2021, 23:44 UTC. Tweet

art twink (art_twink). “You know what ABA gave me? Immense guilt every time I give myself a “reward” without completing a task first. And by rewards I mean things like going to the bathroom, eating, doing anything other than keeping my body Very Still”. 4 Apr 2021, 14:03 UTC. Tweet 

Autvntg (autvntg). “I am of the opinion that … it is more useful to view autism as a sort of neurological culture group than as a social disorder or a disability.” Autism, cures, genocide”. Oct 9, 2018, 4:51 UTC. Tweet

Baron-Cohen, Simon. “The Truth about Hans Asperger’s Nazi Collusion.” Scientific American , Scientific American, 17 May 2018, https://www.scientificamerican.com/article/the-truth-about-hans-aspergers-nazi-collusion/. 

Bec J (Beczabu) “Can’t handle the constant noise and rowdiness of co-workers. Makes me want to run and hide. And they seem to love making me feel bad about myself”. Feb 18, 2018. 22:06 UTC. Tweet.

Bettin, Jorn, et al. “Neuroclastic.” NeuroClastic , 6 Dec. 2021, https://neuroclastic.com/. 

Brooke Winters (brookwinters33). “The social model of disability defines being disabled as something that happens when accommodations aren’t made and environments aren’t accessible. Autistic people are not disabled by autism. We are disabled by an inaccessible world. Autism is not a disorder”. Nov 16, 2017, 2:16 UTC. Tweet

“Cognitive Rigidity in Autism – Nurture Pods.” Nurture Pods Pte Ltd , 31 May 2019, https://www.nurturepods.com/cognitive-rigidity-in-autism/#:~:text=Some%20traits%20characteristic%20of%20the%20cognitive%20rigidity%20found,is%20welcome%20to%20the%20autistic%20child%2C%20even%20comforting. 

“Common Traits.” Autism Citizen , 9 May 2018, https://autismcitizen.org/autism-a-learners-guide/common-traits/. 

Corvid Working on comms (corvidcactus) “small doodle because today is #WorldAutismDay and #AutismAcceptanceMonth. I’m autistic. Please do not “light it up blue” or support orgs like autism speaks. Listen to and uplift autistic voices. Acceptance is more important than awareness. #ActuallyAutistic” Apr 2, 2021, 6:47 UTC. Tweet.

Crosman, Cassandra. “The ABLEIST History of the Puzzle Piece Symbol for Autism.” In the Loop About Neurodiversity, 1 Dec. 2019, https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece-symbol-for-autism/.

E (QueerDeaf). “#SayNoToABA because I was a DEAF child who had my HANDS taped together for stimming. You cannot convince me it isn’t abuse/all about controlling another human being to the fullest extent without consequences. #ActuallyAutistic #AutisticPrideMonth”. 5 Apr 2021, 5:53 UTC. Tweet

“Eugenics.” Wikipedia , Wikimedia Foundation, 6 Dec. 2021, https://en.wikipedia.org/wiki/Eugenics#:~:text=Many%20countries%20enacted%20various%20eugenics%20policies%2C%20including%3A%20genetic,or%20forced%20pregnancies%2C%20ultimately%20culminating%20in%20genocide.%20. 

Hand, Dr. Brittany, et al. “Research.” Autism Speaks , https://www.autismspeaks.org/research. 

Henkel, Dani, et al. “7 Reasons to Not Support Autism Speaks.” The Odyssey Online , 5 Aug. 2020, https://www.theodysseyonline.com/7-reasons-not-support-autism-speaks. 

Howard, Brian. “’Autistic Person’ and ‘Person with Autism’ Are Not One and the Same.” TheHill , 9 Nov. 2021, https://thehill.com/changing-america/opinion/580597-autistic-person-and-person-with-autism-are-not-one-and-the-same. 

Kyle (TigerDropped) “Good morning & happy #AutismAcceptanceMonth. As someone on the autism spectrum who was diagnosed when I was 14, I send nothing but love & support to my fellow autistic people. Remember to listen to our voices & don’t speak over us. And daily reminder: Fuck Autism Speaks”. Apr 1, 2021, 2:19 UTC. Tweet. 

“Learn the Signs of Autism.” Autism Speaks , https://www.autismspeaks.org/signs-autism. 

Liz Both Dinosaurs Bernstein (yeralizard) “Sooo many organizations and individuals that purport to advocate for autistic people yet continually silence us when we criticize them just prove more & more that they care more about autism martyr mommies than they do about us”. Feb 10, 2021, 7:50 UTC. Tweet.

MSSNG , https://research.mss.ng/. 

Myk says ho ho ho (mykola). “Apparently people are down with removing adhd from the gene pool. You can bet how this person and her followers might feel about autism. This is why google’s MSSNG project is so awful, because these fuckers would really do it”. Apr 8, 2021, 19:28 UTC. Tweet

Natasha, et al. “7-Step Formula to Easily Change Unwanted Dog Behavior.” The Online Dog Trainer , 30 Nov. 2021, https://theonlinedogtrainer.com/7-step-formula-to-easily-change-unwanted-dog-behavior/. 

NeuroClastic (NeuroClastic) “Autism Speaks is a hate group. They have done and continue to do irreplaceable harm. They know the statistics about autistic suicide rates. They don’t care. They’re still pushing autistic conversion therapy which contributes to devastatingly high autistic suicide rates”. 22 Nov 2021, 8:31 UTC. Tweet

“Our Mission.” Autism Speaks , https://www.autismspeaks.org/our-mission. 

“People-First Language.” Wikipedia , Wikimedia Foundation, 20 Nov. 2021, https://en.wikipedia.org/wiki/People-first_language. 

Pippa Louise Berry (pippa_louise) “Yep. More than 18 jobs in 11 years and it’s impossible for me to work as I never last more than 3 months. For me it’s a lot of things that overload me but mainly social relationships I struggle massively with x”. Feb 18, 2018, 9:03 UTC. Tweet.

Punny and Pup (pupkittyfan1) “Sia’s film about autism is very dangerous, in the movie the autistic character is restrained and held down, this method is very dangerous and can harm Autistic ppl when they’re having a meltdown. Many Autistic ppl have spoken against this move so please listen to our voices”. Jan 23, 2021, 10:02 UTC. Tweet. 

Sarah Boon #StopTheShock (Saraheboon) “As #ActuallyAutistic is trending…. Hi, I am an autistic woman (yes we exist). Autism is often misrepresented in the media dramatically, which was one of many reasons why I didn’t get diagnosed until 24. Please listen/empower autistic voices when it comes to representation”. Nov 20, 2020, 7:10 UTC. Tweet.

Siebers, Tobin. Disability Aesthetics . The University of Michigan Press, 2010. 

Sinclair, Jim. “Don’t Mourn for Us.” Don’t Mourn For Us , https://www.autreat.com/dont_mourn.html. 

Shelby James Champion (shelbyjchampion) “The reason I passionately dislike the puzzle piece symbol is because it categorizes us as “mysterious” or “puzzling”. It is largely associated with the infamous organization Autism Speaks. I had a very bad experience growing up with that organization”. 7 Apr 2021, 14:10 UTC. Tweet

“Social Model of Disability.” Social Model of Disability – an Overview | ScienceDirect Topics , https://www.sciencedirect.com/topics/medicine-and-dentistry/social-model-of-disability. 

Ultra Violet Rae (UltVioletRae) “Glob give me the patience to survive the autism mommies during the rest of autism month. The audacity. The victimhood. The eugenics. The torture as treatmetn. This month is supposed to be for us, yet they make $ for eugenics off our struggles, and silence us. Nauseating”. Apr 19, 2021, 7:54 UTC. Tweet. 

“Why ABA Therapy Is Harmful to Autistic People.” Autistic Science Person , 4 Nov. 2021, https://autisticscienceperson.com/why-aba-therapy-is-harmful-to-autistic-people/#:~:text=ABA%20therapy%20also%20rewards%20autistic%20children%20to%20hide,to%20poor%20mental%20health%20and%20even%20increased%20suicidality. 

17 shadesofpurple (17shadesofpurple). “I lost two jobs that I was fantastic at. I was told flat out that I wasn’t a good fit “socially” and they had to weigh that against my top performance. Guess what won. Both times”. Feb 18, 2018, 18:27 UTC. Tweet.

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The Autist Papers: The problem with Autism Speaks

Autism Speaks is a controversial organization that claims to want autistic people to reach their “full potential” — but is this truly its focus?

Many people on the autism spectrum see Autism Speaks as a threat to the autistic community, as on its website it claims to represent the community through “global awareness” and “accelerating a spectrum of solutions for tomorrow.” Think about the word “solutions” here. This implies that autism spectrum disorder is just that — a disorder or inherent problem in society that needs fixing.

Many members of the autism community, including myself, have a problem with the way that Autism Speaks thinks and operates as an organization. It essentially consists of a vast majority of neurotypical individuals on its board of directors. As diverse as the autism spectrum is, I think it is quite ironic that many of these directors for Autism Speaks are men that are not on the autism spectrum. This doesn’t provide for much diversity of thought, nor does it promote “actually autistic” voices.

Autists have protested Autism Speaks since its inception. Their protests were even more validated in 2009 after the organization released a horribly offensive commercial, titled “I am Autism,” that portrayed autism as a monster or demon that children unfortunately deal with every day of their lives. While watching the old commercial,  I thought I was watching a PSA about childhood cancer, or something that was truly terrible.

I know this would never fly today, with the autistic children of that time growing up to be successful individuals within society. We now know that autism doesn’t only affect children, and it isn’t a disease that can or needs to be cured. It’s a neurotype that is lifelong, and instead of curing it or looking to find a cure, we should be more accepting of individuals with this neurotype. Autism should be celebrated, not stamped down in individuals from a young age.

I believe this is precisely what Autism Speaks aims to do: ostracize and isolate people with autism from society and “cure” them. This is an inherently hateful organization that views autism as a children’s disorder and exploits sympathy donations that most often come from parents of children with autism.

I’m so lucky that I grew up with parents that accepted my autism from day one. A common theme of children with autism is that they have parents who act like their child’s autism was the worst thing that has ever happened to them. My parents want to amplify my voice as an autistic adult through my columns, and other work, to make the neurodivergent community as visible as possible.

As for the previously mentioned phrase “actually autistic,” many people use #actuallyautistic on social media to amplify the voices of individuals with autism to protest Autism Speaks. In my work to have the autistic community be treated as equals among our neurodiverse peers, I think there is a lot anyone can do to support the #actuallyautistic community.

Think twice before you donate to Autism Speaks. If you want to donate to an organization that continues to try to find a cure for a disease that isn’t one at all, then be my guest. But please consider that Autism Speaks talks about autistic people without including them in the conversation, and it is not financially responsible.

The Autistic Self-Advocacy Network is a great example of an organization that provides support, community and public policy advocacy for people on the autism spectrum. The Autism Society of America is another great resource. These organizations, unlike Autism Speaks, are run by autistics, for autistics and are designed to be accessible and welcoming to the neurodiverse community.

There are other small things you can do to support the autistic community and protest Autism Speaks, like stopping use of the puzzle piece symbol to represent the autistic community. Although small, it is an outdated way of viewing the autistic community and is the logo for Autism Speaks. Use the rainbow infinity symbol, which symbolizes neurodiverse pride and represents this very column, an outlet to amplify #actuallyautistic voices and causes.

Liv Cushman can be reached at [email protected] .

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I’m the spectrum and don’t agree • May 11, 2023 at 1:13 pm

I talk as an autistic who hate autism speak for different reasons. Autism Speaks is little more than a money laundering scam that aims to have it’s “research” go nowhere. There have been actual research firms that actually have been able to treat an reduce symptoms of autism whereas Autism Speaks only aims to line it’s pockets.

Autism, Advocacy Organizations, and Past Injustice Adam Rosenblatt Associate Professor of the Practice in International Comparative Studies, Duke University Email: [email protected]

autism; neurodiversity; Autism Speaks; politics; transitional justice; ethical loneliness; temporality; violence

Fruitful connections can be made between Disability Studies and post-conflict transitional justice, two areas of scholarship concerned with human rights and the impacts of violence that have rarely been brought into critical dialogue with one another. For over a decade, one of the world's largest and best-known autism organizations, the US-based Autism Speaks, has been subject to criticisms and boycotts by autistic self-advocates and their allies. This article describes the forms of harm attributed to the organization, arguing that these harms can be viewed through the lens of what transitional justice scholar Jill Stauffer calls "ethical loneliness": "the experience of being abandoned by humanity compounded by the experience of not being heard" (2015b, 1). I argue that Autism Speaks's recent reforms and responses to criticism, in focusing largely on present-day organizational policies and structures, fail to grasp the full temporal dimensions of ethical loneliness or the importance of addressing past injustice.

Introduction

This article explores how past injustice informs contemporary politics in the U.S. autism advocacy landscape, focusing on the longstanding conflict between the organization Autism Speaks, on one side, and autistic self-advocates and their allies, on the other. Theories related to post-conflict "transitional justice" offer insights into claims of harm made by some autistic individuals and communities against Autism Speaks, and the failure of the organization's recent conciliatory measures to help it gain legitimacy with its critics or promote meaningful reconciliation.

To speak of autism and past injustice is to call forth a long legacy including stigmatization, abandonment in abusive institutions, lack of access to education, and "therapies"—many of them still common today—that punish and injure autistic people in the name of behavioral "correction." This article's focus is on a seemingly more banal, yet still painful, piece of autism history: the division between traditional autism organizations founded by parents and caregivers and the growing autism rights/neurodiversity movement. There is no more contentious example of that rupture than the decade-plus history of the largest US-based autism research and advocacy organization, Autism Speaks.

While there are multiple reasons why Autism Speaks has this emblematic status, many of them can be summarized in the fact that the organization has long promoted and been identified with what is called a "medical model" of disability as it applies to understandings of autism. In the medical model, autism is defined as an illness or disorder rather than a difference (see Michigan Disability Rights Coalition 2017); thus, the purpose of autism advocacy is to find ways of "treating" autistic people (by making their behavior more closely resemble that of neurotypical peers) and ultimately cure autism itself. This medicalized understanding of autism, and the way it has long driven the organizational priorities of parent-founded groups such as Autism Speaks, is the subject of sustained criticism and activism by autism rights activists and members of the neurodiversity movement, who argue for accepting autism as a natural form of human difference along the lines of race, gender, or sexuality, and thus fighting for inclusion, equal rights, and public policies that better serve people of many abilities, rather than seeking a cure (see Orsini and Smith 2010; Silberman 2015). These perspectives are in line with a "social model" of autism and other disabilities, elegantly summarized by autistic researcher Richard Woods (2017): "The primary goal of the social model has always been to take the focus from the individual impairment, and to shift the gaze towards societal structures" (2017, 1094).

While the tension between medical and social models of disability impacts many different spheres of disability advocacy (see Waltz 2012, 220-222), opposition to Autism Speaks is distinct in both its scope and its centrality to the autism rights movement. Well-known autistic author John Elder Robison, upon resigning from Autism Speaks' Scientific Advisory Board in 2013, wrote, "Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target. […] No one says the Cancer Society does not speak for them. No one describes the Cystic Fibrosis Foundation as an evil organization. All that and more is said of Autism Speaks every day." Robison may overstate the case somewhat; other high-profile disability organizations, especially those working through a "charity" framework, have been criticized for chasing cures rather than using their influence and funding to support other ways of making disabled people's lives better and increasing their access to public spaces and institutions (see Weiner 2011). Yet these divisions in the autism world stand out for not only the depth of feeling that Robison underscores, but also the breadth of issues they touch upon—including everything from the terminology used to describe autistic people, 1 to specific interventions such as Applied Behavior Analysis (discussed below), to fundraising and scientific agenda-setting. As autistic activist Larkin Parker-Taylor (2017) describes, opposition to Autism Speaks—especially during the month of April, when the organization engages in major fundraising campaigns to mark Autism Awareness Month (which neurodiversity advocates celebrate, in a form of counter-demonstration, as Autism Acceptance Month)—has become its own tradition in the autistic self-advocacy community, and thus part of the way that community remembers itself and reproduces a culture.

Robison's invocation of the concept of legitimacy is highly significant. Critics regard Autism Speaks not simply as engaging in problematic forms of advocacy, but as fundamentally illegitimate—unfit to speak about autism or for autistic people, and unworthy of funding or support. The specter of illegitimacy connects Autism Speaks to the predicament often facing regimes after episodes of authoritarianism and state-sponsored violence, since one of the central questions of transitional justice is how states can reestablish their (democratic) legitimacy after mass violence. Stephen Winter writes, "a broad spectrum of transitional justice practice embodies legitimating values. These connections are how transitional justice responds to the corrosion of political legitimacy by authorized wrongdoing" (2013, 237).

The controversy surrounding Autism Speaks is bound up with a particular institution's claim to legitimacy amongst the constituents it publicly represents, and how that legitimacy is still "corroded" by past injustices. Transitional justice concepts and scholarship offers useful tools for thinking about the relationship between past injustice and present legitimacy. While some might object to the implied comparison between Autism Speaks' policies and the state crimes most associated with the transitional justice literature (such as genocide, torture, and enforced disappearance), as I will show below, an understanding of these policies as embedded within a history of violence against autistic people—even though Autism Speaks is far from solely responsible for that history—is part of what is at stake for many of the organization's critics.

Transitional justice can be used to indicate a specific set of political and juridical practices, as in Winter's description above. Some examples of these practices are war crimes tribunals, truth commissions, reparations, and official apologies. But transitional justice can also be a way of understanding the relationship between justice and temporality, indicating transformative moments when the present and future hinge, even more than in "normal" times, on grappling with the past (Teitel 2002). In bringing a transitional justice lens to autism's politics, this article looks beyond the specific contexts and practices that have usually defined the field, such as genocide, mass violence, and the dilemmas of war crimes tribunals and truth commissions. It draws on philosopher Jill Stauffer's exploration of the myriad experiences of those who suffer grave injuries and then seek, often against great obstacles, to have those experiences recognized by a wider public. Stauffer joins these temporally separate experiences of harm—the initial injury, and the subsequent struggle for hearing and recognition—into a single concept, "ethical loneliness." She defines ethical loneliness as "the experience of having been abandoned by humanity combined with the experience of not being heard" (2015b, 1).

Ethical loneliness is particularly useful in understanding the Autism Speaks controversy because, unlike much transitional justice discourse, it does not depend upon a shared understanding that there is a clear break between a violent or troubled past and a stable, reparative present. Rather, it allows for more complex continuities and discontinuities, and even for the possibility that people's experiences of harm and marginalization impact what they experience as "past" versus "present." The relationship between time, injury, and personal or institutional conceptions of justice will be central to my analysis of Autism Speaks' conciliatory strategies and their failures. I argue that Autism Speaks assumes a distinction between past and present, and thus the potential to move forward into a future that is imagined as less divisive, without recognizing just how "present" the organization's harms still are to many autistic people. These differences play out not only in divergent discourses but also in concrete practices, such as the organization's deleting controversial videos and fundraising appeals from its website without any comment or apology (thus reinforcing the sense that it wishes to mark off parts of its past as distinct and distant), and autistic advocates' archiving and reposting of those same materials (reinserting the "past" into the unresolved present). Furthermore, Stauffer's decision to use the term "loneliness" in describing what it feels like not to be heard by an institution or the "surrounding society" (Stauffer 2015b, 29-33)—as opposed to other possibilities, such as frustration or marginalization—opens up a new and productively ironic possibility for scholarship about autism. The persistent trope of autistic people as "loners"—which one book of writings by autistic people refers to as "the myth of the person alone" (Biklen et al. 2005)—can be transformed into questions about a different, more politicized conception of loneliness. In Stauffer's view, ethical loneliness—as opposed to the aloneness of solitude or privacy—is imposed unwillingly on people "whose story cannot or will not be heard… [and thus] whose harms have not yet been addressed" (Stauffer 2015b, 32).

While applying ethical loneliness and other transitional justice-related concepts to the very non-traditional human rights context of the Autism Speaks controversy, this article nevertheless shares with much transitional justice scholarship the broader purpose of using conceptual tools to answer a concrete set of questions about how institutions gain and lose legitimacy, especially after histories of violence. Its central questions are as follows:

• What are the sources of tension between Autism Speaks and many autistic self-advocates/neurodiversity advocates?
• What has the organization done to address this history?
• Why have these steps largely failed to promote reconciliation or greater legitimacy for the organization?
• How might an understanding of ethical loneliness help inform a new approach to one of the deepest divisions in the autism world?

Before addressing these questions, I offer a brief history of Autism Speaks in order to provide some context for the following section, which categorizes the harms autistic self-advocates and their allies accuse the organization of perpetuating during the nearly fifteen years of its existence. The fourth section describes the potential contributions of a transitional justice approach to the Autism Speaks controversy, and the particular relevance of the idea of ethical loneliness. The conclusion examines steps taken by the organization to repair relationships with its critics and others in the autism community, and argues that these strategies will not meet with success when they continue to exclude explicit engagement, let alone a full reckoning, with the past.

Autism Speaks, Past and Present

While the United States is home to many autism research and advocacy organizations, none compares in stature, budget, or global profile to Autism Speaks. In 2014 alone, the organization raised close to US$60 million in grants and contributions, and spent over US$42 million on its programs (Charity Navigator 2017). Autism Speaks was founded in 2005 by Bob Wright, the chairman and CEO of NBC Universal, and his wife Suzanne (who died of pancreatic cancer on July 29, 2016). The couple's grandson, Christian, was diagnosed as autistic in 2004, prompting the organization's founding in 2005 (Autism Speaks 2012a).

Though Autism Speaks appeared on the scene relatively recently in the history of autism advocacy, the Wrights' networks of media elite and their fundraising might—starting with a kickoff donation of $25 million from their friend Bernie Marcus—allowed them to enter into the field with a show of force. Furthermore, Bob Wright's answer to the divisions that had already plagued the autism world for decades was to seek to unify the field. The group did this largely through takeovers (sometimes friendly, sometimes hostile) of other, less well-resourced autism organizations (Donvan and Zucker 2016, 466-470). 2

Autism Speaks funds research "into the causes, prevention, treatments and a cure for autism" (Autism Speaks 2012a), providing resources for autistic people and their families, as well as public awareness campaigns (for example, the annual "Light It Up Blue" campaign to mark Autism Awareness Day on April 2, and the ubiquitous puzzle-piece logo that the organization adapted from previous groups). In fact, because of its media literacy and connections, "awareness raising"—meaning bringing autism to the attention of a wider public, but also creating brand awareness of the organization as a source of help for the "problem" of autism (see Waltz 2012, 221)—is something Autism Speaks has been able to do perhaps more effectively than any other autism organization. The emphasis on speech in the group's name is thus appropriate, in the sense that speech and messaging are among its great capacities; but it also dramatically heightens tensions over whether Autism Speaks actually speaks for everyone affected by autism or represents the condition, and their lives, accurately.

The focus here on controversies and harms does not do justice to the complexity of an organization as large and multifaceted as Autism Speaks—or of an autistic community in which not all members share the same view of the organization (see, e.g., "'Autism Speaks' Response to autistic input" 2011). Even some longtime critics are now arguing that too much focus on one organization is not constructive, and that Autism Speaks' brand dominance in the autism advocacy world is fading, making the energy devoted to critiquing it of questionable utility (Anonymous 2017; Taylor-Parker 2017). As the organization evolves, it increasingly offers resources on uncontroversial issues such as back-to-school transitions and anti-bullying strategies. Thus no single, monochromatic view of Autism Speaks would be fair.

Yet the persistence of critical voices, and calls from autistic people to boycott the organization, cannot simply be brushed aside. The 2013 departure of Robison—a self-described "voice of moderation" (Robison 2013) who has put considerable energy and authority into finding a pro-neurodiversity, pro-science "third way" in autism advocacy—was one sign of how deep the fault lines had grown.

The harms Autism Speaks has been accused of perpetrating against the community for whom it claims to advocate—autistic people—are categorized and explained below. This is a simplified list constructed out of a long, contentious history; its purpose is not to log every single complaint made against Autism Speaks (for an attempt at a complete catalogue of this sort, see The Caffeinated Autistic 2017). Rather, it organizes the major claims of injustice into coherent categories in order to help readers understand what might be required in the name of justice and even "reconciliation," to the extent that ambiguous and troubled phrase is an appropriate goal for any process that seeks to repair both specific harms and ongoing relationships (see Stauffer 2013).

As I proceed, I am conscious of my own role as a non-autistic scholar and the parent of an autistic child. I know that I am now part of a history where parents' speech and advocacy has contributed greatly to some of the most important victories regarding de-institutionalization, access, and education, but has also been implicated in paternalism, pseudoscientific theories and treatments, and violence (both psychological and physical) against autistic people. I seek, in this and other works (see Rosenblatt 2015), to analyze stakeholders in the context of violent and contentious histories, and to do so in ways that do not reduce them to victims and perpetrators, or demons and saints. This article does not spend a lot of time editorializing, whether to affirm or raise objections, about the longstanding criticisms of Autism Speaks; though in paying intentional, sustained attention to texts written by individuals who identify as autistic (and who are often excluded or marginalized, by design, in the kinds of academic spaces I inhabit daily), 3 I do attempt to correct for the power imbalance that characterizes any clash between a wealthy mainstream charity and its far less widely recognized critics. As a scholar, I treat both Autism Speaks and autistic self-advocates as key and complex stakeholders in a contentious landscape of autism advocacy. Yet as an "autism parent," as well as a teacher and activist who supports the neurodiversity paradigm, I openly wish that the organization so many Americans associate with autism was better at listening to the voices of autistic people, more earnest in its engagement with a painful history, and more committed to the kinds of activism and policy work that center mutual care, radical inclusion, and the transformation of our deeply ableist society.

Categories of Harm

The focus on finding a cure.

Autism Speaks is far from the first or only organization to describe its highest purpose as finding a cure for autism. In fact, one of the organizations that Autism Speaks absorbed in its early years was Cure Autism Now, which had existed since 1995. Autism research pioneer Bernie Rimland's organization Defeat Autism Now! was started in the same year (Donvan and Zucker 2016, 559). No one issue pits large numbers of parents and caregivers, especially those with loved ones whose intellectual and/or social challenges require high levels of support, against neurodiversity advocates in the way that the fight over curing autism does. As Dana Lee Baker writes, "Taking pride in the presence of something is difficult to do while simultaneously attempting to eradicate it" (2011, 191). Ari Ne'eman, the founder of the Autistic Self Advocacy Network, argues, "The object of autism advocacy should not be a world without autistic people—it should be a world in which autistic people can enjoy the same rights, opportunities and quality of life as any of our neurotypical peers" (2010). Autistic self-advocates frame the search for a cure as, quite simply, a form of eugenics (Taylor-Parker 2016). Yet for many parents and caregivers, the challenges facing their loved ones seem too great, and the neurodiversity project too utopian, to cease searching for medical interventions that would make autism itself, at least as currently experienced by the people in their lives, go away (see Donvan and Zucker 2016, 521; Lutz 2013). Though it is beyond the scope of this work to address in depth, the 2012 decision to eliminate a separate diagnosis of Asperger's Syndrome, in the DSM-5, had major political as well as clinical ramifications; some parents and caregivers now accuse the neurodiversity movement of being made up largely of "high-functioning" autistic people with no intellectual impairments and Asperger's-type autism, who (according to these parents) have now been empowered to speak across the spectrum in the voice of all autistic people (Lutz 2013).

Having long framed its mission as a quest to cure autism, Autism Speaks has recently responded to sustained criticism by eliminating the word "cure" from its mission statement (Dahl 2016). Crucially, it has replaced the goal of "Funding global biomedical research into the causes, prevention, treatments and a possible cure for autism" with language about "promoting solutions […] for the needs of individuals with autism and their families" as well as "increasing acceptance and understanding of autism spectrum disorder" (Jones 2016). NeuroTribes author Steve Silberman and some neurodiversity advocates have been cautiously optimistic about the new mission statement reflecting a real shift in Autism Speaks' culture (Dahl 2016). A more skeptical self-advocate, Maxfield Michael Sparrow Jones, points out that the prominent use of the word "solutions," put together with a reference to "advancing research into causes" of autism spectrum disorder, still amounts to a cause/solution sequence that is consistent with the pursuit of prenatal screenings, cures, and other strategies for eliminating autism as a part of the human condition (Jones 2016). They also claim that unless the priorities, messaging, and expenditures of the organization are radically altered, changes to the organization's mission statement are merely cosmetic (Ibid.).

Messages of stigma, fear, and erasure

Autism Speaks's long-standing search for a biomedical cure for autism has been expressed in a specific discourse about the condition itself and about autistic people—a discourse the organization did not invent, but which in the US context it has done more than any other group to promote and spread. In 2009, Autism Speaks debuted a video campaign called "I am Autism." Though reminiscent of earlier ad campaigns, such as the NYU Child Study Center's "Ransom Notes" ads that helped galvanize the neurodiversity movement (see Kras 2010), the video takes scare tactics to a new level. It begins with ominous music, as a voice intones, "I am autism. I'm visible in your children, but if I can help it, I am invisible to you until it's too late. I know where you live. And guess what? I live there too." The voice goes on to make a series of increasingly dark threats: "[I]f you're happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain"; "I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?" (Autism Speaks, 2009).

Most critics focus on the scare tactics of these first, brazenly manipulative two minutes of the video. Equally significant, however, is the upbeat and seemingly more benign second half of the advertisement, in which the triumphant families of autistic people voice their strength and their promises to fight autism. Not only does the video's language cast autism as a hostile enemy rather than part of the self; it also excludes autistic people from its vision of living together in strength. Every voice in the second half of the video is that of a family member or caregiver pledging to do things for an autistic person or against autism: "You have not properly been introduced to this community of parents and grandparents, of siblings and friends and school teachers and therapists and pediatricians and scientists. Autism, if you are not scared, you should be" (Ibid.). Never is any agency, preference, or desire to live a satisfying life accorded directly to an autistic person.

When not imagining autism itself speaking in the voice of a predator, the organization has also used a metaphorical language in which autistic people are "missing" (see Wright 2013), their true selves absent or locked away. The message still echoes in the organization's "MSSNG" program that supports autism genetics research. Though Autism Speaks states that the title and missing letters "represent the missing information about autism that the research program seeks to deliver" (2017), they also reference a long tradition of seeing autistic people as changelings that are somehow less than the original person they were born to be, "empty fortresses" (Bettelheim 1967) devoid of an interior. As in the second half of the "I am Autism" video, the issue here is not simply one of embracing a medical versus social model of disability, but rather one of erasing the very personhood of the autistic subject.

"Speaking over" while claiming to "speak for"

The messages of stigma, fear, and erasure described above cut even deeper because of Autism Speaks' assertion, encoded in the organization's name, that it speaks for autism, autism families, and the best interests of autistic people. As Silberman says:

[T]he disability rights movement is predicated on people speaking for themselves and gaining their own voice in the formulation of public policy, while the original autism parents' movement was predicated on parents speaking for their children, because many of their children couldn't speak. That's one reason that some parents and self-advocates are at odds; now people who communicate through keyboards and other forms of assistive technology are demanding the right to speak for themselves and to set their own priorities. The very name of a parent-run organization like Autism Speaks implies erasure of their voices (Brooks 2016).

Since its inception, Autism Speaks has faced criticism for failing to include any autistic people in decision-making roles, attending hearings and setting agendas for autism funding without autistic people present ("nothing about us without us" 2012). The resignation of Robison, the most prominent autistic person involved with the organization, was a low-water mark. In 2015, two autistic people were appointed to the 31-person Board of Directors, a change greeted lukewarmly, at best, by major voices in the US self-advocacy community (Autistic Self Advocacy Network 2015).

Misrepresenting its mission and diverting funding:

One of Autism Speaks' official "four pillars" is "family services" (Advancing Futures for Adults with Autism 2014). Yet analyses of its spending consistently show the vast majority going to biomedical research, media awareness campaigns, and fundraising. While there may be reasons why these kinds of calculations are too simplistic a way to measure the organization's priorities or impact, 4 autistic self-advocates have mobilized them as evidence of the organization's fundamental commitment to efforts to cure/fix autistic people, and "raise awareness" about the condition amongst non-autistic people, over supporting programs for the inclusion and support of autistic people based on needs they express themselves. According to a critical analysis of its 2014 Non-Profit Tax Exemption Forms, only 4% of its budget was spent on services directly benefiting autism families (Autistic Self Advocacy Network 2016). Given the ways in which Autism Speaks has absorbed a heterogeneous set of other organizations, consistently attracted a lion's share of donations, and "occupied the field" (Kennedy 2014) of autism advocacy, some critics accuse the organization of misrepresenting its priorities and re-directing money that was donated in the hopes of helping families, in the present moment, to biomedical research with controversial, and often distant, outcomes (see Jones 2016).

Supporting controversial therapies and vaccine panics:

Autism Speaks supports Applied Behavioural Analysis (ABA) and other therapies to which many neurodiversity advocates object. ABA approaches have evolved since the "adversive"-heavy, often physically abusive techniques promoted by pioneers such as Ole Ivar Lovaas (Donvan and Zucker 2016, 191-223; Silberman 2015, 304-323); though it still exists in its worst form in the Judge Rotenberg Center, a "school for special needs" in Canton, MA and the target of sustained activism by autism and disability rights activists. Staff members at the Center regularly administer electric shocks as a disincentive for "unwanted" behaviors, and have been accused of beating and spitting on their "patients" (see Smith 2018). Even in less heavy-handed forms, many variations of ABA involve forcing eye contact and eliminating certain behaviors, such as the repetitive motions sometimes called "stimming" (short for "self-stimulation"), that self-advocates say provide an outlet for sensory overstimulation and help them remain focused. Some autistic people who have experienced ABA therapies say that forcing eye contact, and penalizing behaviors such as stimming, actually increases their stress and lowers levels of functioning in social and educational environments (see Bascom 2011; Devita-Raeburn 2016).

During the peak years in which British gastroenterologist Andrew Wakefield created panic by alleging that the ingredients in the MMR (measles-mumps-rubella) vaccine cause autism in children—research that has since been ruled fraudulent and retracted by its publisher, The Lancet —Autism Speaks attempted to maintain a "big tent" philosophy that avoided any official position on the controversy. The Wrights' daughter, Katie, publicly feuded with her parents after making various public declarations that her son's autism had been caused by immunizations. Still, throughout much of the period, the organization funded vaccine-related research (Donvan and Zucker 2016, 485-6).

Focusing on "awareness" messages rather than standing for rights and denouncing violence:

The final category of harm in this list is not the best known of the criticisms of Autism Speaks; yet it is key to this article because it sheds light on how the past informs the present. Furthermore, it gets to the heart of the controversies surrounding the organization because it exposes how, under the surface, what is at stake here is not only the divide between medical and social models of disability, or cure vs. celebration (see Baker 2011, 191-214) but also different constructions of "advocacy," based on different conceptions of what it means to be a political and historical subject within the frame of autism.

Many neurodiversity advocates see violence as a fundamental and salient part of autism's history (see Brown 2016). In Autism Speaks's discourse, in comparison, violence is not prominent. The organization provides resources related to the bullying and stigmatization of autistic people, especially children; and broaches the topic of violence obliquely. It has addressed questions such as whether video games make children more violent, and joined in the important work of publicizing research that debunks the link often made in the media between autism, violence, and mass shootings (Autism Speaks 2013b).

One of Autism Speaks's most controversial public service videos (shown at the Sundance Film Festival in 2007) features the organization's then-president, Alison Singer, confessing that in a moment of distress over the options available for her autistic daughter, she once contemplated driving off of the George Washington Bridge with both herself and her daughter in the car. The reason she chose not to do so, in her telling, is that she also had a non-autistic daughter in need of her care (Autism Speaks 2006). Though Singer intended the statement as an indictment of the inadequacy of services and educational options for autistic children, and an honest expression of the panic and abandonment some parents feel, many autistic people (and other parents and caregivers) heard it as a plain-spoken admission that Singer thought her daughter would be better off dead. Moreover, she seemed to suggest that the needs of her neurotypical child were the only relevant moral considerations. Critics were particularly angered by her choice to voice these feelings right in front of her autistic daughter, with a camera recording (in fact, most of the confessional interviews in the film are conducted with an autistic child present). The assumption—a perilous one, as many nonspeaking autistic people have illustrated when empowered with computers and other assistive technologies—is that the child cannot understand what is being said, that lack of speech is equal to lack of comprehension.

The research-centric, medical charity model of Autism Speaks, however—along with, perhaps, a narrow construction of what it means to be "political" (see Hendrix 2012)—has meant silence about institutionalization and torture-style treatments, alternative therapies that injure and kill, police violence, and "mercy killings" by distraught parents and caregivers. 5 Yet for autistic people these forms of violence are markers of the everyday, as well as central facets of what constitutes autism history: they are the ties that bind today's autistic self-advocates to the mostly voiceless generations that have gone before.

In the summer of 2016, disabled people around the world and their allies responded with horror to the police shooting of caregiver Charles Kinsey by an officer who reportedly was aiming at Kinsey's autistic companion (Rosenblatt 2016), as well as the brutal knife murder of 19 people at a care center for people with cognitive disabilities in Sagamihara, Japan (BBC News 2016). Autism Speaks released no official statement on either event.

"Extreme Autistic Aloneness" and Ethical Loneliness

Autism Speaks has gradually reconfigured aspects of its approach in response to criticisms, which have likely been internal as well as external. There have been a few major turnovers in leadership, including the Wrights both stepping down from the Board of Directors. The organization has recently highlighted the work of autistic volunteers and its new board members (Robison 2015). Despite dropping the word "cure" from its mission statement, it does not yet show signs of significantly shifting its focus from genetic and biomedical research; though it would also be too simplistic to say that all of this research is directly aimed at a cure or prenatal test. Some studies have more complex potential outcomes, such as those looking at the relationship between environmental factors and autism rates (see, e.g., Autism Speaks 2013a). While still often framed in stigmatizing terms of autism "risk," and thus politically fraught (see Baker 2011, 210-211), research of this sort might also help debunk popular (and poorly researched) theories such as vaccines or pesticides causing autism, while offering the public a more complex understanding of how environmental and genetic factors interact in the production of various manifestations of both diversity and disease.

At the time of this article's writing Autism Speaks still hosted on its website the "Autism Every Day" video and an op-ed by Suzanne Wright referring to autistic children as "missing." Both have been taken down since, and are preserved only on other sites, usually with critical responses from neurodiversity advocates. The organization rarely acknowledges its uniquely controversial status within the autism world, and seems not to have incorporated an understanding that its rhetoric in these advertisements and public statements, for many in the autistic community, were not simply bad branding: they were forms of violence .

The problem of past injustice—and especially violence—is at the heart of the practice and study of transitional justice. In an influential early work of transitional justice scholarship, Ruti Teitel defines the term as indicating moments when the "conception of justice" is "contingent and informed by prior injustice" (2000, 6). The question of transitional justice, in its starkest terms, is: because of then , what now ? It is a question that is relevant to the politics of autism in ways that popular accounts often fail to recognize, and its role in the prolonged crisis of legitimacy for Autism Speaks is particularly overlooked.

When it comes to autism, however, what "transition" is there? We have no story of an authoritarian regime finally being ousted by its democratic opposition, or of peace accords being signed. Autism Speaks' own relationship to its troubled history is, as we have seen, more one of halting and partial acknowledgement than of crisis and transformation. As the field of transitional justice scholarship has evolved, however, it has begun to offer conceptual tools that address these more complex timelines and more iterative projects of justice and injustice. Philosopher and legal scholar Jill Stauffer's concept of "ethical loneliness" is one such tool.

Stauffer defines ethical loneliness as "the experience of having been abandoned by humanity combined with the experience of not being heard" (2015b, 1). The term thus denotes the mingled effect of two events that are temporally separate: some form of violence and abandonment, and then also a compounding of that abandonment through the refusal of the outside world to listen or hear about that harm on the survivor's own terms. Stauffer identifies the harms inflicted on survivors during an atrocity and afterwards not as necessarily morally equivalent, but nevertheless important to understand in terms of their continuity within an individual's story of injustice—that person's unique experience of ethical loneliness.

The idea of transitional justice is generally premised on the existence of some events in the past, which now become relevant to the building of a shared future (see Teitel 2000). However, as Stauffer points out, we do not all share the same temporalities; and the experiences of trauma and harm can impact what we experience as "past," and what remains present. She writes, "only some conditions allow the past to be past" (2015b, 123). A person or community experiencing ethical loneliness cannot always accept the terms in which dominant projects of transitional justice or reconciliation are offered, because their "past injury" is still part of their present. Crucially, for Stauffer, the answer to this dilemma is not to focus exclusively on the individual victim's need for psychological healing or on the designation of individual responsibility through criminal law (though these things may be important too); but rather to understand the complex layers of shared responsibility in an unjust, "cooperatively authored" world (Stauffer 2015b, 140). Acts of listening and recognition are the first step in rebuilding a world that "make[s] hopeful revisions possible" (Stauffer 2015b, 137-141). As she summarizes in another work, "survivors want the harms they have undergone to be heard, and the wrongness of them affirmed in a lasting way not only by the perpetrators but by the surrounding society. They seek the help of others to reassure themselves that they are living in a world with others, one in which they will be protected when they are under threat. They seek meaningful human rights" (Stauffer 2013, 44).

Ethical loneliness is a provocative lens for understanding the history and politics of autism for at least three reasons. First, it is a source of unexpectedly fruitful ironies regarding how the rhetoric of "loneliness" has played out in autism discourse since the condition was first identified in the 1940s. Second, and more crucially, Stauffer uses the concept of ethical loneliness to cut across traditional divisions between transitional justice discourse—with its emphasis on mass violence and radical evil—and the everyday harms people experience in "ordinary" settings (for example, victims of sexual assault). Third, she shifts the focus from the traditional triad of victim/perpetrator/bystander to the role of institutions whose practices can allow for hearing or close off that possibility. Stauffer does not believe that institutions, alone, can guarantee all of the forms of hearing, affirmation, and rights protection listed above without more everyday and "anarchic" forms of solidarity (Ibid.); but she does seem to think that institutions bear a particular responsibility for hearing survivors' real needs, and that special forms of violence and harm ensue when the institutions charged with all or part of this task do not do their job adequately. So, again, if an organization is to be called Autism Speaks, it seems to call upon itself a particular form of responsibility for hearing autistic people—especially if one of the central things those people have been expressing is their desire to be recognized as survivors of widespread, widely accepted violence.

Some unexpected power and potential hazard in using the term "ethical loneliness" to analyze autism's history comes from the long history of "loneliness" being used as a trope in portraying autistic people. Stauffer's book tells the stories of people who survived the Holocaust, Apartheid-era violence in South Africa, sexual assault, and other violence. All of these people are rendered alone by outside forces and failures, and yet—with a few important exceptions (Stauffer 2015b, 97-105)—are largely able to persist in speaking about their own desire to connect and to be heard (through writing, sharing testimony in courtrooms, or oral histories, for example). Autistic people make for unique subjects of ethical loneliness precisely because popular conceptions of autism have, for so long, hinged on the idea that autistic people cannot or do not desire this kind of connection or storytelling—that they prefer to be alone, or know no other way to be. The word "autistic" comes from the Greek for "self"; according to autism pioneer Leo Kanner's original description of the condition, "Profound aloneness dominates all [autistic] behavior" (Kanner 1943, 247). In a letter to the mother of his famous "Case 1," a boy named Donald Triplett, he elaborated, "The main distinction [of autistic behavior] lies in the inability of these children from earliest infancy to relate themselves to other people" (qtd. in Donvan and Zucker 2016, 37). Kanner later labelled this trait " extreme autistic aloneness " (Kanner 1944, 211).

The understanding of autism has evolved so that the "loneliness" of autistic people is no longer seen as evidence of infantile psychic damage (traditionally blamed on insufficiently affectionate mothering) or a preference for solitude, but rather of impairments in communicative abilities and understanding of social cues. Nevertheless, the idea of autism as an "empty fortress" that walls the autistic person off from the world persists. It is present in the threats delivered (supposedly in the voice of autism itself) in Autism Speaks' "I am Autism" video (2009), as well as in the exclusion of autistic people from the triumphant chorus of voices vowing, in the second half of the video, to fight autism and create a better (defined as autism-free) future.

To look at the ethical loneliness of autistic people, rather than the problematic theories of psychological and cognitive loneliness ascribed to them, is to flip the script. In keeping with the insights at the heart of the social model of disability, it provokes us to ask not "how does autism isolate people?" but rather "how do features of the social world isolate autistic people?" In fact, one of the ways in which autistic people have been made ethically lonely, per Stauffer's description, is precisely through the trope of their supposed psychological loneliness. In other words, loneliness can become self-enacting: when the dominant culture promotes a notion of a group of people as having a "preference for aloneness" (Wolfberg 2009), it thrusts loneliness, and failures to be heard, upon them. It is difficult to understand the depth of the anger at Autism Speaks without grasping this broader dynamic.

Autism Speaks has its own special history with the "injustice of not being heard" because of the ongoing practices with which it has insisted on speaking for autism, on the largest stage to which any organization has had access, largely without engaging its many autistic critics. Stauffer notes, in the history of international transitional justice, a pattern of "institutions designed for hearing [that] fail to hear well" (Stauffer 2015a)—institutions that thus become participants in ethical loneliness rather than sites for its undoing. Autism Speaks's problem may be related but distinct: with its emphasis on speaking , its design for hearing did not simply fail. Rather, it was never constructed in the first place, because the organization did not originally identify hearing autistic voices as part of its mission.

Yet the concept of ethical loneliness also offers a small bridge across the troubled waters that lie between parent-led charities and the neurodiversity movement. The injustices experienced by caregivers, especially mothers in the era when Bruno Bettelheim and others were blaming them for causing their children's autism (Bettelheim 1967), can also be described through the lens of ethical loneliness. Caregivers found themselves responsible for children whose unique minds and challenges had not been (are still not) well understood, or accepted, by the society in which they lived. Until the anti-institutionalization and public education activism of the 1970s through 1990s began to have major successes (see Donvan and Zucker 2016, 147-187), it was possible to commit one's child to a prison-like institution for life, but not to enroll her at the local public school. Parents who resisted consigning their children to institutions were then faced with having them home at all hours, often with no outside assistance and little integration with their surrounding communities or feasible access to public space.

On both sides of this terrible choice, which Kristin Bumiller aptly describes as a shift in "the location of care […] from public institutions to the isolation of the household" (2013, 144), lie forms of being "abandoned by humanity." Either the child was abandoned in an institution, or the family retreated to the home and remained abandoned by most other key institutions of society: schools, sports teams, clubs, and so on. The first part of ethical loneliness, abandonment by humanity, was thus inescapable. On top of that original injustice, for decades the "experts" and most of the public demanded that these caregivers, mostly mothers, think of all of these problems as their own fault.

In the era of the "refrigerator mother," a narrative of parental/maternal culpability occupied the field where any other narrative, such as one of human diversity and common responsibility to care for one another, might have been voiced. Caregivers became unhearable, because these mothers, like their children, could only be seen as objects for corrective intervention and never as sources of knowledge or ethics. The "injustice of not being heard" thus completed a circle of ethical loneliness drawn almost as firmly around caregivers as it was around autistic people. If Autism Speaks and similar organizations were more able to think historically, about histories of voice and histories of violence, they might focus on these similar dynamics that still impact caregivers and autistic people. 6 In doing so, they might better perceive that challenging unjust and uncaring structures— politics , beyond lobbying for more research funding and beyond "charity"—should be the central and unifying thread of autism advocacy. But this perspective, of course, requires seeing autistic people as subjects: paying the same attention to their suffering and their agency as one does to that of (other) caregivers.

Conclusion: Autism History and Retrospective Justice

The recent boom in attention to autism and autism history is important in many ways. To many, it is a fascinating chapter in the history of science, featuring emergent understandings of the diversity of the human brain, moral panics about "refrigerator mothers" and vaccines, and now a new, neurodiverse chapter in the politics of identity and difference. A clear telling of autism's history, however, would also allow for the detailing of specific and complex injustices, and thus for answers—theoretical and practical—to the question of repair. Just as transitional justice casts the future legitimacy of the political order as bound up in its full recognition of violent histories, the building of a neurodiverse future must incorporate a project of revisiting the past.

The allegations that Autism Speaks has seemed least able to address are the very ones that make transitional justice a relevant framework for analyzing its history. Added up, these allegations illustrate how the injuries of the past, through the layered experience of ethical loneliness, are still present for many in the autistic community—and thus impact the institutional landscape shared by everyone in the broader "worlds of autism" (Davidson and Orsini 2013). The organization has made reforms in its present structure and mission statement without seeming to realize that what may seem like "the past" to its board, staff, and many stakeholders is still actively present for those who experience autism's socially produced forms of ethical loneliness. This divergent temporality is most evident when Autism Speaks attempts to make isolated reforms and move forward; these are met with repeated requests for backward-looking acknowledgement, such as autistic activist Lei Wiley-Mydske's reply that she is still waiting for "over a decade's worth of apologies" (qtd. in Boycott Autism Speaks 2016). She is waiting, in other words, to be able to let the past become past.

In the long-term, it does not seem constructive for autism advocacy to be framed as a war between two paradigms: the parent group and the self-advocacy community. As powerful as the self-advocacy movement has been, furthermore, it may not be possible for a group such as the Autistic Self Advocacy Network simultaneously to serve as a pioneering, rights-based builder of autistic community and as a broad umbrella under which multiple stakeholders—autistic self-advocates, scientists, families and caregivers, therapists and educators, and so on—come together. Gil Eyal et al. write, "Ultimately, both sides need each other… deinstitutionalization has saddled parents with the task of representing, advocating for, and translating their children for neighbors, teachers, and many others on a daily basis. The self-advocates provide them with the language, confidence, and support to make these translations" (2010, 233). Eyal's metaphor of "translation" is problematic, as is his casting of self-advocates as serving a utilitarian purpose of lending "support" to parents (who thus, in this formulation, are granted unquestioned authority as advocates for their children). But the rest of his point has merit. Parents, self-advocates, and autistic parents advocating for both themselves as caregivers and their autistic children—all are permanent stakeholders in the politics of autism, and best thought of as interdependent, and thus responsible for listening to one another.

Autism Speaks has the funding, stature, and capacity to be the "big table" where people meet to sort out these complex issues of autonomy, voice, and care. It cannot do so with legitimacy, however, until it addresses its past—until there is "an appreciation of the damage done" (Autistic Self Advocacy Network 2015). The exact means by which the organization addresses its past can only be the result of conversations and negotiations, and is difficult to prescribe in advance of that political process.

Nor should one assume that addressing the past would lead, immediately, to a repair of the rift between Autism Speaks and its large, heterogeneous group of critics. Stauffer argues that the act of creating spaces for addressing past injustice must be untethered from the expectation of forgiveness (2015b, 122). Autism Speaks can neither demand forgiveness nor guarantee its legitimacy in the eyes of people it has alienated while representing itself as their advocate. What it can do, in acknowledging past injustices, is place itself back on the same timeline—acknowledging that the past does not simply disappear along with links that are removed from its website, but rather stays present to those who feel harmed by it. The first step in achieving its stated mission of "bring[ing] the autism community together" (Autism Speaks 2012b), it seems, is to replace a politics of erasure with an honest dialogue about its place in a "cooperatively authored" (Stauffer 2015b, 140) autism world—a world that, like any other, cannot plan its future without grappling with its past.

Acknowledgements

The author wishes to thank Colin Cheney, Kristin Lindgren, and Jill Stauffer for conversations and inspiration, and the two anonymous reviewers for their helpful suggestions.

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• Many mainstream autism organizations and charities use "person-first" language, describing individuals as "having autism," "having ASD," or as people "with autism." Their argument is that no individual person is defined by their condition or disability alone; and person-first language reinforces common humanity rather than recalling the stigma long attached to terms such as "autistic." Neurodiversity advocates tend to argue that this stigma—which renders autism akin to diseases such as cancer—is precisely what they seek to counter by referring to themselves and others as "autistic people." They embrace the same kind of identity-first language generally used for terminology related to race, ethnicity, sexuality, and other forms of identity-based difference (see Brown 2011). This article uses identity-first language wherever not quoting from another source, in keeping with the preferences of many self-identified autistic people and the author's practice with an autistic family member in his own home. Return to Text
• The book by Donvan and Zucker cited here has itself come under critical scrutiny by neurodiversity advocates, many of whom find the book aligned with mainstream parent advocacy and pro-cure perspectives, much like Autism Speaks itself (see Human 2016). I cite the book for historical material the authors present, especially where its focus differs from that of its "competitor" that was much better received in the autism self-advocacy community, Steve Silberman's NeuroTribes . I agree with many of the criticisms of Donvan and Zucker's language and analysis, and have not relied on it for its outlook on the politics of the U.S. autism advocacy landscape. However, I do not think that a refusal to cite historical details from it would be a constructive way to engage with the text critically. Return to Text
• See Price 2011; Dolmage 2017. Return to Text
• For discussions about "overhead spending" and how the impact of nonprofit organizations is measured—often problematically—see GuideStar, BBB Wise Giving Alliance, and Charity Navigator, 2014; Palotta 2013. Return to Text
• Mitzi Waltz, drawing on the work of David Hevey, points to a tendency for disability charities to "dream of social change without political action" (2012, 221). Return to Text
• These two groups are emphatically not mutually exclusive; many autistic people care for others, including raising children. Autistic parents of autistic children—including people who identify as both self-advocates and caregivers—are not at all uncommon. Return to Text

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Where the autistic rights movement IS the news!

Autism Speaks: An Epidemic of Ableism

Trigger Warning: ableism, eugenics, and Autism Speaks

“This is generations of children to come that will be diagnosed with autism, and we as a country, and as a world, we have to stop.”

Those were the words spoken by Autism Speaks co-founder, Suzanne Wright, during an interview in Nantucket on August 14, 2013. That very statement sums up a deep-rooted hatred for a group of vulnerable people. Replace the word autism with gay, black, or deaf, and the organization would be condemned by the majority of people. This is the same organization where their former executive vice president talked about the thought of murdering her own child while they were in the same room . Based on their history, Autism Speaks seems to envision a world where autistic people no longer exist.

Suzanne Wright never did achieve her dream of curing autism before her passing in 2016. The fear of a potential attack toward the autistic population such as a prenatal test still lingers, as the MSSNG project has shown no signs of slowing down. MSSNG is a database compiling 10,000 genomes of autistic people and their families that utilizes Google’s cloud software throughout different labs across the world. It’s a collaborative effort between those scientists to, “lead to breakthroughs in identifying the causes and subtypes of autism, as well as advancing the diagnosis and personalized treatment of the disorder,” as Autism Speaks said .

While an ambitious effort, such an idea can be incredibly problematic because it can potentially give scientists unprecedented power to find ways of eliminating autistic people from being born, if they choose. A prenatal test for Down’s syndrome already exists, in which 100% of babies with the condition were aborted between 2008-2012 in Iceland. Having a prenatal test exist for disabilities such as Down’s syndrome and autism subliminally gives society the message that disabled people are undesirable and should not exist. A prenatal test for babies with a life-threatening heart condition or something deadly could certainly be beneficial so parents can prepare. But since Down’s syndrome and autism does not kill the person nor anyone around them, the only reason people would want to have such a test exist is out of ableism and quite possibly eugenics.

While parents should be prepared for a child that is disabled, the best way to do that would be by giving resources that will help the child thrive, rather than encouraging them to “mourn” the existence of their child such as that in Autism Speaks’ 100 Day Kit . Of course, integrating autistic people into the community and teaching young children in school to embrace autistic people would be a great start, as opposed to fearing them. Autistic behaviors can be difficult for people to understand at first, which is why education (through a compassionate, non-biased approach) is the key.

Despite how grim Suzanne Wright’s words were in that interview alone, her husband and the other co-founder, Bob, had his own equally harmful focus on the matter. “They do that because they see that the productivity loss here is significant,” Wright said. “If you’re going to lose one to two percent of your male population to autism, that means they’re not going to be productive. And that means part of your population is not only not productive, but they have to be cared for.”

That raises the question: what’s wrong with not working and having to be cared for? For societies to thrive, we have to take care of our most vulnerable people. Many autistic people are quite eager to work, but due to inherent bias and discrimination, they are not afforded those options because of an ableist workforce. Nonprofits such as Popcorn for the People display the eagerness of autistic workers in spades, but until businesses find a system to include autistic people among their employees (being paid a wage where they can live independently, which should apply to all other workers too), the population will suffer. And if companies do formulate such a system, the unproductivity that Bob Wright fears will be remedied, and autistic people would be paid, so everyone would benefit in some way in the end.

While social skills can be challenging for many on the spectrum, that does not mean they should be deprived of opportunities to work. If an autistic person chooses to be a cashier, for example, then perhaps a sign on a storefront window could display that the business in question hires autistic people. They could then lay out a list of things customers should expect from the autistic person tending the register. Not only would that help the company by showing that they are inclusive to hire autistic people, but it could also integrate autistic people in the community and teach customers how to better understand them by putting them together in the same environment. Such ideas of integration do not require reforming the system we live in entirely. All it takes are some subtle changes to the environment, as well as changes in perspective and attitude.

Since the video that this article responds to is an hour long, another section to unpack and discuss are the commercials sandwiched between each interview. One that undoubtedly stands out is the one featuring Mattias Hildebrand, who is the grandson of Bob and Suzanne. He is also the brother of Christian, who was the one that inspired the Wrights to found Autism Speaks after he was diagnosed as autistic (technically labelled under PDD-NOS, as stated by Bob Wright). The commercial showcases Mattias’ experience living with Christian while he narrates. Mattias’ tale is told through animation rather reminiscent of a cross between children’s drawings and an indie rock music video. It’s visually beautiful. However, the boy’s portrayal of Christian is what forces the overall message to juxtapose with the lush and whimsical art style.

He starts out talking about his love for Christian’s sense of humor and their time of diving together. It gives the viewer a sense of warmth at first. But then the video takes a sudden left turn when Mattias says, “it’s hard for him to talk, and when it does, it’s just… not right.” Christian has high-support needs and is nonspeaking, but just because he can’t speak in the way neurotypicals may expect does not inherently make his method of communication “not right.” There is no true correct way to communicate, as iPads and facilitated communication has opened amazing opportunities for nonspeaking autistics for years. Those words are not Mattias’ fault since he was so young, but if his grandparents taught him that it’s okay to embrace differences, it’s perhaps probable that his narration would carry a different tone.

After that, he then talks about how Christian cries in his bedroom, where Mattias states that, “it’s one of the times that it’s hard to have a brother with autism.” While it can be difficult to live with a high-support needs family member if the correct resources are not available or provided to the family, Christian’s nights of crying are private and not something any child would want their relatives talking about; it’s even more exploitative for the person in question when said private moments are included in an animated video produced for a mass audience.

A commercial included in the video which pales the previous one is a montage showcasing Autism Speaks’ accomplishments through their famous/infamous “Light it Up Blue” campaign. While it has the usual sensational elements a promotional video of a charity of similar size and scope would have, it quite subtly takes a sinister turn. After showing how much reach the campaign achieved across the world in different landmarks, the narrator mentions a $100 million brain science initiative brought forth by the Obama administration. The narrator then states that it aims, “to help researchers find new ways to treat, cure, and potentially prevent brain disorders such as autism.” She says all this without breaking stride while a children’s chorus sings the words “light it up blue” unendingly in the background. It can be easy to miss the quote, but when one does hear it, it can send chills down the spines of any autistics. It’s an alarming example of a video promoting the prevention of an entire group of people from existing while using imagery of people smiling and children cheerily singing.

Based on research of Autism Speaks’ materials, a common thread that the organization seems to focus on most is the high-support needs autistics. Many of those people have medical conditions such as seizures and gastrointestinal issues, which should undoubtedly be treated. With that said, there is a difference between treating things that would harm or kill a person if left untreated and preventing that person from existing entirely. Autism cannot be separated from a person, as it is the way a person’s brain is wired and forms the basis of their movements, thoughts, feelings, and everything else. If you remove the autism, you have nothing left. If anything, you would have a completely different person inhabiting that person’s body.

The thing is, when you talk about preventing autism, that includes the low-support needs autistics too. Autistics, no matter how their traits manifest, are deserving of the same amount of dignity and respect. For an organization to suggest that such a group of people should be prevented from existing is simply damning and warrants drastic changes to the society we live in. As long as such an attitude toward developmental disabilities is normalized, then the futures of the autistic population in the next century will hang in the balance.

Thank you for writing this. Great information and may this help many to understand better what Autism Speaks is about.

This is Amazing, in fact this part here, this whole paragraph displaying the hatmfullness of Autism speaks is something that I as an Autistic individual connect with because I’ve had someone else say the same about me

“he then talks about how Christian cries in his bedroom, where Mattias states that, “it’s one of the times that it’s hard to have a brother with autism.” While it can be difficult to live with a high-support needs family member if the correct resources are not available or provided to the family, Christian’s nights of crying are private and not something any child would want their relatives talking about”

The paragraph shows us what those associated with autism speaks are like and how they dehumanize and infantilize Autistics while removing their personhood through the violation of privacy.

The overall article was excellent.

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7 Reasons Why I Support Autism Speaks as an autistic adult

I’m autistic and I work for Autism Speaks as their Director–Social Media and Social Influencer Marketing. I work there because I support them, and have for a few years now. The opinions I’m sharing here are solely my own, as one autistic person. I don’t speak for Autism Speaks or the autism community. No one alone speaks for the autism community. 

Anyone who has read my book knows that until a few years ago I was neutral about Autism Speaks. Why? Because I didn’t have enough information. I had incorrect information, too. I’m not the type of person who reads an opinion online and takes it at face value. I formed my opinion based on my own research and what I discovered to be facts. 

Now that I’ve worked for Autism Speaks for a while, I can confidently say that what I discovered was correct, and I do support Autism Speaks and its mission.

Is Autism Speaks a hate group?

Every single time I mention Autism Speaks in one of my posts, someone comments that I need to do my research because Autism Speaks is a hate group. 

It’s people’s right to not support Autism Speaks, of course. If that’s the case with you, say “I do not support Autism Speaks,” not “Autism Speaks is a hate group.” I encourage you to do research to challenge your belief. See what you find. Spreading misinformation about an organization you don’t support has real-life effects.

7 Reasons Why I Support Autism Speaks

1. they listen to autistic people.

Not only do they want people on the autism spectrum to reach their full potential as individuals, but they listen and give a voice to autistic people.

In the past, they’ve listened to feedback from the autism community and made positive changes. 

One of the things that keeps being said about Autism Speaks is that they don’t hire autistic people and don’t have autistic people on their board. Both accusations are false. How do I know? I’m autistic and I work at Autism Speaks and I’m far from their only autistic employee. People aren’t obligated to disclose their diagnosis and honestly, I don’t blame those who don’t, when I see the bullying of anyone who supports Autism Speaks. 

On their board, there’s Dr. Stephen Shore, who is openly autistic. For those who don’t know, he’s the guy who originally said, “if you know one autistic person, then you know one autistic person.” but he’s not the only autistic board member.

Autism Speaks also has a podcast called Adulting On The Spectrum, produced and hosted by two autistic adults, me and Andrew Komarow. We have only autistic adults as guests — even those who don’t support Autism Speaks.

Autism Speaks also 5 autistic “ Champions of Change “, autistic writers, and autistic ambassadors.

2. They don’t support eugenics 

No idea where the rumor that Autism Speaks supports eugenics came from, but it’s completely false. “Autism Speaks does not support eugenics. Our research in the genomics field (via AGRE, MSSNG, and PATH) exists to help advance the field so that ultimately autistic people have access to personalized, precision care that will empower them to lead their best lives.”

3. They use the puzzle piece symbol

Just like many autistic adults, and loved ones of people with autism, I like the puzzle piece symbol. Contrary to what’s said on social media, Autism Speaks doesn’t use the puzzle piece symbol because they want to represent that people with autism are missing a piece. They use it because they believe that their updated, more colorful puzzle piece, represents inclusivity and optimism as they look toward a future of progress for those on the autism spectrum. It has never been about autistic people “missing a piece”. Let’s stop that rumor, okay?

4. They’re not looking for a cure

“Cure” was removed from its mission statement in 2016. The thing is, even if they were looking for a cure, it still wouldn’t be a reason to call them a hate group . Many autistic people are in favor of research into a cure. Many are offended by the idea. We don’t even know what a “cure” would look like. What if we could target a specific struggle that affects many autistic people, while keeping the more personal or preferred traits? 

Some of us struggle more than others and don’t see our autism as just a personality difference. It should be a personal choice. Back to the point though, Autism Speaks is NOT trying to cure autism.

5. They do a lot for the autism community

Recently, they helped get Medicaid to cover autism for children in all 50 states, Texas being the last. They also helped develop the WHO Caregiver Skills Training Program. Here are some other goals they have: 

• Increasing early childhood screening and timely intervention with our bilingual public service campaigns aims to lower the age of diagnosis to help children with autism reach their fullest potential and offer resources to help caregivers better support their children with autism. I personally was able to get an early diagnosis for Charlie (22 months old), thanks to the M-Chat , the results of the test are what got the ball rolling. He scored so high that doctors took us seriously right away.
• They give out grants : Autism speaks provided $320k in direct grants to local autism organization in 28 states who have the ability to serve many members of the community at the local area.
• Improving the transition to adulthood for the 70,000+ autistic Americans who age out of school-based support each year by offering free online resources for transition, employment, education, housing, and community living. We also launched our new inclusive employment initiative (WIN) to build and support inclusive workplaces through a comprehensive suite of resources. 
• Ensuring access to reliable information and services throughout the life span by continuing to expand our Autism Response Team’s reach, technical skills, and knowledge to provide more people– particularly in underserved areas and communities – access to resources, information, and support from time of diagnosis through adult life.
• Workforce development training programs for employers, jobseekers and the community to promote diversity in hiring : Educated and engaged 8,200 autistic jobseekers, employers and service providers through employment events and Workplace Inclusion Now™ course access. Courses are designed to raise awareness around differences in autistic thinking and communication styles along with strategies to build inclusive workplaces. It also included training for autistic employees and jobseekers on how to navigate their differences in a customer-facing workforce, including self-advocacy, autism disclosure, and employee rights in the workplace.
• Their autism hotline is amazing

Their hotline is The Autism Response Team. For everyone looking for help, The Autism Response Team (ART) is an information line for the autism community.  Autism Speaks Team members are specially trained to provide personalized information and resources to people with autism and their families. 

You’ll get personalized advice based on what your situation and needs are. It’s free, of course.

Get in touch with their Autism Response Team here .

6. Their website is a mine of autism resources

It’s not the easiest website to navigate but when you know where to look, you’ll be amazed at the resources available for free.

I often get asked about how to teach children AAC. That’s a complicated question and task but their guide is a great starting point:

• Getting started with AAC
• If you suspect your child has autism, take the M-CHAT here .
• Knowledge is power, particularly in the days after an autism diagnosis. The Autism Speaks 100 Day Kit helps families of children ages four and under make the best possible use of the 100 days following the diagnosis. A 100 Day Kit for school age children is also available.
• Haircuts? Autism Swim lessons? Autism evaluations. You’ll find your answers here .

7. They include everyone on the spectrum

Everyone on the spectrum is included at Autism Speaks, people with low support needs, people with higher support needs, and everyone in between. They also provide support to caregivers of autistic people. As someone with level 1 autism, raising a child with level 3 autism, I find this representation very important. Just take a look at the diversity of profiles and stories shared on the Autism Speaks Instagram page . No one is left out and that’s amazing!

The Autism Speaks controversy

So where does the controversy come from? Some of it comes from mistakes made over a decade ago that have since been fixed and some of it comes from the constant propaganda being spread on social media.

The main mistake was the “I am Autism” video, which depicted autism in a rather uncomfortable way with some questionable wording. Not only is that video TWELVE years old, but Autism Speaks has also apologized for it and it was taken down from their website within a few days of being posted. This video does not represent Autism Speaks. Here’s their statement about it:

“I Am Autism” was a mistake and the video was removed from our channels shortly after it was posted, in 2009. We apologize for the video and the harm it may have caused. Since 2009 we have not shared or distributed the video. We are aware that the video is still being posted and shared today by others as an example of our current campaigns and messaging – which it is not.

We are focused on supporting autistic people of all levels of need so that ultimately, they can lead their most meaningful lives – of their choosing. Our public service campaigns and marketing efforts reflect this focus on personal growth and inclusivity.”

I’d like to add that non-profit organizations are required to report their expenses publicly so if you see that fake pie chart being circulated, again don’t take it as face value. I implore you to go Autism Speaks website to look at public numbers and facts.

Give organizations the chance to evolve

Bottom line. Companies evolve. I think it’s amazing that Autism Speaks listened to the autistic community, took the feedback, and made meaningful changes. We can’t expect perfection but we can request to be listened to, and on that front Autism Speaks delivered.

I’m autistic and I support Autism Speaks, and I hope you give them a chance.

I also want to leave this Autism Speaks Pie Chart here:

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67 comments.

My life has been hell. I just learned that I am autistic in 2020 at the age of 57. Now my life is more hell!!!!

Why is it more hell after learning you’re autistic?

wow this is like bad like real bad did you get paid to write this by autism speaks bad still only 1 autistic person of 28 individuals on its Board of Directors from what i know and they are still funding cures do better.

They are not. No one is forcing you yo support them but don’t spead msinformation.

Source: https://www.autismspeaks.org/autism-speaks-questions-answers-facts

Alexa Votruba

I LOVE this article! I cringe back at my “anti-Autism Speaks/ABA” phase. Not to mention,Autism Speaks is the ONLY website where I’ve found guides for everything.

You do relaize that linking back to Autism Speaks for your defense of the company is extremely sketchy right? It’s blantent bias and did you know that soemtimes companies lie? They have proven their goal from the very start, and that’s to vilanize autistic people; which has obviously made bullying throughout my and other auties’ lives even worse. It’s like saying that PETA doesn’t kipnap and euthanize animals or euthanize over 80 of their animals, and then linking back to PETA as a source because “they said so”. There’s a reason why people can lie. Because their reputation and money is at stake.

They make said lies because their evil practices is how they make their money. The entire article itself comes from someone from Autism Speaks which could be a bias source and could’ve easily been paid.

I don’t understand why people are offended over talk of a cure? The high functioning autistics are rejected by society and the low functioning autistics need daily support. I am undiagnosed but I can say with certainty that I’m on the spectrum. I’m considering socialization training for myself and possibly for my daughter. It gets tiring living on the fringe of society.

You shouldn’t be living on the fringes of society, though. Therein lies the problem. What the good autism advocacy groups are doing, are fighting FOR autism’s acceptance in society, not AGAINST it like Autism Speaks is. Socialization training is good, and it worked for me, but I was taught to embrace my autism instead of suppressing it. If you have autism, you shouldn’t be living with the thought that there’s something wrong with you. Like you need to be “fixed.” It is the public view of autism that needs fixing.

You can be fighting for autism acceptance and still support a “cure”. Many people are capable of embracing their autism in a healthy way and that’s great – but many people will never be able to do that. And not just because society won’t accept them, but because for many people it is a disability that takes away their ability to function enough to reach that level of growth and fulfillment. Many people will never be able to speak, communicate, regulate their emotions, or have the basic autonomy to even try to “embrace their autism”. So while many people don’t want or need a “fix”, the idea that searching for a “cure” is WRONG, is exclusive to the many that do have autism steal their ability to even attempt embracing who they are.

Reluctantly Autistic

Thank you so much for this. I too want more autism acceptance but I also dearly want a cure for my condition. I’m high functioning but autism robs me of social connection with others (even autistic people) and limits my employment prospects. It is very selfish and dare I say immoral to say that we can’t search for a cure just because a few people wouldn’t want it. You have bodily autonomy so just don’t take it! However, do not leave people like me to suffer for your neurodiversity ideological nonsense.

As a Father of someone on the spectrum let me illuminate on what my position is on this. I say it every day to my wife, if there was a shot or a pill that could wipe away my sons autism I would have him take it without hesitation. My son is non verbal and has had every therapy available since his diagnosis at 2.5 he is now 8. He still needs constant protective supervision and will most likely live this way for the rest of his life. Can you or anyone here say with moral authority that I am wrong? My wife and I are his sole caretakers for the rest of OUR lives. He most likely will never know the joy of being married, or having children of his own. Driving a car with the wind in his hair listening to a song he loves on his own cognition. Yes he will always be loved and cared for with no questions asked or any hesitation. He is beautiful and I love him more than words can describe, but Autism is no blessing in disguise, it is not some cause for neuro diversity chants. It is real life, it is tough on all who love him, and I hate it with the passion of a 1000 sun’s. Not the people who have it, just Autism.

That is your personnal experience. Saying you hate autism because of that became ableism (discrimination toward autism). What is happening with your son is sad, and I will feel the same toward his autism if I was you, but hating autism for one person is really not OK. Every autism person is unique, and you will be surprise to know that some autism are way better as social skills than the majority of regular people. I am really sorry for your son, again, I understand the pain. But what you are saying is discriminating. Your life experience is not an excuse to put everyone in the same boat.

Your description sounds more like severe intellectual disability than autism. Medical and Hollywood bigots decided to make autism synonymous with intellectual disability in the 1980s. Even so, the stereotyping and bigotry your throwing in is dangerous and can irk on violence from ableists. Sure enough, a number of autis, myself included, have learning disabilities; ADD/ADHD; APD; some communication problems; & other neurological issues. However, autism is very much an umbrella term and is not one single condition. No two cases are the same. Most autis think outside the box, and can be very revolutionary in their thinking; which is the mixed blessing that makes it hard for us to communicate our views to the neurotypical populations.

as an autist, fuck off. whos paying you?

Fuck You... That's Why!!!

Was going to ask the same thing. I don’t for a minute believe this person is autistic and if they are they are being paid by Autism $peaks so autism speaks as someone who they can point to and say “look this autistic person supports what we’re doing”..

The idea that something that isn’t a disease and is completely genetic needs to be “cured “is fucking offensive and is a covert way of advocating for eugenics.

When it comes down to it autistic folks just want the same thing as everyone else we want to be accepted for who we are and we don’t want people to pretend something that is part of our lives/personalities is some sort of disease that needs to be “cured” when many of us are extremely proud to be autistic and we wouldn’t want to be neurotypical if we had the choice.

Not to mention autism speak pretty much only exists to let crappy parents feel like they’re in the right for wanting to abuse their autistic children because with the way Autism $peaks talks they genuinely make it sound like having a kid with autism is more devastating than losing your kid to cancer.

This whole piece reeks of “look at all the money Autism $peaks gave me to dunk on my own people”

And then you see the idiotic neurotypicals claiming that they don’t understand why suggesting something that isn’t a disease needing a curious offensive because they don’t realize that if it’s not a disease it doesn’t need to be cured and there’s nothing wrong with us it’s honestly fucking disgusting if you ask me.

I’m in my late 20s. I was diagnosed with Aspergers as a child and have been living with it, ADHD, and a learning disability my whole life. There are positives and there are negatives, but if I could choose not to be on the spectrum, I think I would. It is exhausting and overwhelming. Every day. It is possible to say this without devolving into stinking self-hatred and self-pity, as hard as that may be to believe. Do I think people could do more to just take me as I am and accept me, and help accommodate me in some ways? Yes of course, and hell, I’m in school to be a nurse right now and I get extended testing time on all my exams, among other things, but that doesn’t mean I’m not gonna do work on my end to improve my social skills and figure out ways to accommodate for my sensory processing issues.

And in regards to your comment that trying to find a cure is “eugenics”, people decide to get abortions or not have children all the time for any number of reasons related to their genetics (as is their choice), and there is no way I would sit and listen to some hysterical screed like what you’ve written trying to tell me and mine that choosing not to have a child or to abort, when there’s a very high chance our child could have autism or down syndrome or some other developmental disability, is eugenics and that it’s “wrong”. I know very little about Autism Speaks, I really just found this blog or whatever because I googled “are there any autistic people who support Autism Speaks” out of curiosity after watching that stupid “I Am Autism” video, but never forget that Autism is a diagnosis, not an identity, or at least it’s PART of an identity; not all of us who have it think the same and not all of us are obnoxious and cultlike about it (like you appear to be from your comment).

One more thing, the fact that you say “idiotic neurotypicals” and “dunk on my own people” tells me something too, I think you treat having autism as some kind of badge, as an identity, as something that makes you feel a part of some chosen few, almost like a race or an ethnic group. We’re not special. I know the world is hard to navigate for us, I know it often feels unconcerned and arbitrary, and I know people could often stand to have more patience with us, but truly, the pigheadedness and sectarian attitude that you put on display here is not going to do shit for anyone. Bye-bye for now xoxoxo.

Completely agree with you and autism isn’t an identity, it’s a damaging disorder for many of us. Eugenics has been discredited as a pseudoscience anyway, so people who go around thinking that there is a eugenics conspiracy are as deluded as flat Earthers. Eugenics doesn’t work and a cure doesn’t even fit the definition of eugenics. It is not interfering in reproduction to stop autistic people being born and that wouldn’t necessarily stop the birth of autistic people anyway, as de novo mutations happen as well as there being environmental factors. I hate the NT bashing crap that these types engage in and yes, lots of the neurodiversity movement is like a cult. You are right for telling them where to go.

I see this common rhetoric being spread and accepted in a lot of places on the internet. This idea that “autism isn’t a disease and if you think it is you are evil”. This way of thinking is terribly exclusive to the many autistic people who experience far more than just “different personalities”. Many autistic people have their basic ability of language stolen from them. They will never be able to communicate with others and speak for themselves. Many will struggle with regulating their emotions, understanding the world around them, and many will struggle with compulsive self harm.

This theoretic that autism isn’t a disease is exclusive to others and almost always a selfish point of view. ASD includes many people – some who are capable of accepting who they are and yelling at people on the internet, and some who will never even have that option.

Autistic Kangaroo

You don’t believe Eileen is autistic? You can listen to her podcast or read one of her books.

Thank you for writing this blog post! As an autistic person who personally knows former employees of AS, I know that the controversy around the org is not as black and white as the Internet likes to make it out to be.

Most of the people who vehemently hate on Autism Speaks haven’t actually done their research on the history of the charity. I kept on seeing the “I Am Autism” video going around on TikTok despite the fact it was made in 2009 and the board of directors agreed to take it down because it upset a lot of the community (and even some of the directors). Autism Speaks isn’t like that anymore. It’s upped its game and has progressively stopped with the fearmongering over the years, which indicates it’s going in the right direction.

As early as 2012, quite a few representatives of the organization spoke out after the Sandy Hook shooting. They were adamant in saying that autism does not cause violence, and that many autistic people would be stigmatized as a result of that false claim. Does that sound like something that members of a hate group would say?

I’m not saying AS is perfect, as they could do some more stuff to improve their reputation, but I don’t dislike them by any means. They’ve done a lot to help our community despite what people claim. I applaud autistics like Eileen who have joined the organization to represent us. Instead of writing hateful messages to her because of her opinions on a charity (that she personally works for and knows the ins and outs of), maybe do something to actively help the autism community?

I really wish that people would do actual research before making extreme claims. The iilluminaughtii (or however you spell her name) video had a lot of misinformation and even promoted some dangerous ‘advocates’ in the autism community, but it gained millions of views. Even the autistic employee who resigned from Autism Speaks due to Suzanne Wright’s questionable speech in 2013 doesn’t think they’re a hate group. He wrote a very nuanced essay about it, called “My Time With Autism Speaks” (by John Elder Robison). Anyone who wants a more middle ground perspective should take a look at what he has to say.

Again, thank you for speaking your truth and doing your best to counter misinformation in the autism world, Eileen. Always enjoy reading your blog!

What information specifically featured in illuminatii’s video was false?

Have a guess whose husband made the video for Autism Speaks?

Lauren Franklin

Wait – was it Eileen’s ex husband?

It wasn’t… No idea why “Fred” is saying that. My husband isn’t involved with Autism Speaks whatsoever and never has been.

Internalized ableism is bad and you should feel bad, especially if you’re autistic and support the Autism Speaks hate group.

I personally think that if even if Autism Speaks has changed their ways, why should we have to settle for a system created by allistic people scrambling around to fix their mistakes and understand our needs? So they set a place at the table for a few of us, so what. Why are we still not running the show? I don’t support Autism Speaks because we don’t need the middle man. We should still be de-platforming this organization because those resources and attention can be better placed in our own hands, such as with ASAN.

Get off your ass and run the show then lol! This is exactly why, because people like you are happy to make their mouth go on a keyboard but aren’t so happy about putting the work in to do what they say they want to do so…. rock and hard place mate.

Autism Speaks has been attacked by autistic advocates and autism speaks responded. The reaction by many but not all of autistic community reveals it’s extremism. I am autistic and have also been attacked. They aren’t actually advocates—they are narcissists with power. They pummel people who disagree. One day sadly they’ll be on the other end of the harassment.

So spot on, Thomas. They’ve attacked me and accused me of all sorts because I’d like to be cured from my autism. I got told to kill myself more than once but these oh so mental health aware and lovely people! They are like you said, narcissistic bullies.

Jesus christ. ‍♂️

This is a really, really bad article. First off you work there and are certainly biased. You were also probably paid to post this. There’s a reason AS get as much hate as they do. They’re a horrible organization and you thinking they’ve actually changed is laughable. They were just called out and didn’t want to lose more money. Also to say anyone who doesn’t support them just haven’t done their research is insulting.

I wasn’t paid a cent to write this. My article is based on facts, unlike your comment.

It’s a good article. The bias in these negative comments is palpable. I’m tired of this overly negative, entitled, unforgiving, intolerant culture we have fostered. I blame the internet (mostly), and the media corps that benefit from this discord. People are feeling powerless in their own lives and are looking for something—anything—to transfer their pain onto. They need to blame external things for their misery. And the bigger their miserable groups the better, and this is why we see pitchforks everywhere. I hope it passes. I’m tired of all these entitled jerks being abusive to everyone who has an opinion that differs from theirs. I’m tired of their unchecked bias and lack of grace.

Be strong. You know the truth, and the fact that you are a REAL advocate for something makes you more powerful than all these keyboard warriors. Much love.

I am not convinced, nor am I a f***ing puzzle piece. Don’t speak for me. They should change their name to “NTs speak”.

Not in my name, not in my voice.

Thanks, Eileen. The main thing that I know about Autism Speaks is that it hosts the wonderful podcast Adulting on the Spectrum, which features two autistic people interviewing other people with autism.

hey! fuck you!

This is abusive behaviour. You are a hypocrite if you are saying this because you think AS is a hate group. You are being hateful to a person you don’t know who clearly cares a lot about people in the autism community.

This is a profoundly, deeply problematic article that casually ignores a mountain of evidence to the contrary. Comments like KG’s simply want to brush this under the rug or pretend it isn’t black and white; it is. It is my hope the government formally classifies Autism Speaks as a hate group. The fact they sometimes do good things is the “what aboutism” logical fallacy. The fact they did good things doesn’t negate the momentous and systemic harm this group has done. I’d personally love to watch them burn to the ground or have autistic people perform a hostile takeover.

There was a post that depicted Blue from the Blues Clues show setting the blue puzzle on fire, despite being colored blue. Pure hypocrisy.

Using blue colored characters (such as Blue from Blue’s Clues) to attack the blue puzzle comes off as hypocritical.

The Autism Speaks deniers in a nutshell:

“I’m so obsessed with spreading lies and misinformation on an organization that I love to use fictional characters attacking the blue puzzle, making hateful comics on it, and wishing death on it by drawing a burning building because it makes me a better person, Go fucking me.”

Well gang, it looks like we got a case of lies and misinformation on our hands.

Stop Living in 2009 – The Musical.

In Stop Living in 2009 – The Musical, a bunch of people, both autistic and non-autistic continue to beat a dead horse by spreading lies and misinformation on a organization by doing hate art, protesting, making hateful comics out of it, brainwashing a lot of people into turning against the blue, attacking people whenever they tell them “Autism Speaks has gotten over their past mistakes”, using the “Autism Speaks is a hate group that wants to cure autism” excuse, making cruel videos and bad reviews on the organization, and refusing to accept change, and instead choose to get away with spreading so much hate, it would make Barney the Dinosaur’s hatedom proud.

Come see a broadway musical that will finally reveal the true colors of the #ActuallyAutistic community to the world and a lot of people on social media will finally regret their hatred on Autism Speaks and learn to accept its change once and for all.

Stop Living in 2009 – The Musical, coming soon to a theater near you.

The #DontLightItUpBlue is the new #BringBacktheNationalPokeDex. Change my mind.

finn sambono

i think that if ur sources are from autism speaks you need to actuaslly talk to autistic individuals about the subject and ask them. autism speaks has over and over again sent children with asd to convertion camps where they have been tortured for stimming and for BEING AUTISTIC?? and has donated to those programs, only 1% of its profits is used to help autistic people and their families. the problem is not that they are ‘searching for a cure’ the problem is that they are trying to cure people who have it are are willing to suport torture of LITERAL CHILDREN. idk maybe if youre going to say to do reserch you should maybe get your information from sources outisde of Autism speaks, because of cource they are going to say they are doing good for the world because they want to protect their brand and thir buisness

Autism Speaks has sent autistic children to conversion camps? That’s a big unfounded claim you’re making. We actually are big supporters of stimming at Autism Speaks. https://www.autismspeaks.org/blog/i-stim-communicate-my-feelings

they are killing autistic kids! believe what you want but we will never accept you in the autistic community if you support autism speaks. I’m autistic myself and I would rather kill myself over and over again than ever support a “company” that supports the exact opposite of what they apparently stand for.

Proudly Autistic

The internalized neurotypical supremacy runs deep with this one. You’re autistic and you work for and are paid by the org you’re defending? Not convincing. When the majority of the board is autistic, the head of the org is autistic, and over 85% of employees are autistic, talk to me then.

First off, I would like to point out that this comment section is highly toxic. We should accept everybody’s opinions, whether we agree with them or not. I think that it is best to understand both sides of a debate before making a decision, and I am glad to see that Eileen is sharing her opinions in a calm manner, and I think that whether we agree with her or not, we should totally respect that and strive to do the same. That being said, I am a 16-year-old with high-functioning autism (Aspergers) and I just wanted to share a few of my thoughts. I was diagnosed with Aspergers when I was 4 years old and since then I have gone through some social groups and speech therapy sessions. I believe that those sessions and groups have helped me a lot in terms of communicating with others, understanding facial expressions, and reading the room. My belief is that Autism should 100% be researched more. Not because we should be looking for a “cure” in terms of something along the lines of “turning off the autism switch” (my own words), but because it could lead to discoveries that could help so many autistic people like myself and for non-autistic people who ignorant about what autism really is. There is a wide spectrum of people with autism, and there is an even wider spectrum of opinions. I completely agree that Autism Speaks has made very questionable statements in the past, but let’s not let the past get in the way of the present. The “I am Autism” advertisement (which frankly, I can’t stand to look at another time so long as I live) was more than 10 years ago. A company can go through a LOT of change in that amount of time, let alone an organization. But we will see. They are still questionable in my eyes, but they seem to be making progress. I am in the process of researching both sides to make a decision on where I stand so I would love to understand everybody’s opinions! You are welcome to reply or message me, I even encourage it! It would be greatly appreciated. That being said, please don’t do it in a mean or negative way! Thank you!

I too am on the spectrum. I agree with what you said and the same goes for the article. From my personal experience, Autism Speaks has been one of the most involved groups in my needs. I was actually led to them because of my regretful experiences with other organizations.

I find it funny how most people diss on misinformation (like climate change being a hoax), clickbait, and propaganda, yet like to believe false information on Autism Speaks. Extremely hypocritical!

They take the notion of eugenics seriously and then go and make fun of people for believing in conspiracies. The neurodiversity movement in its present form is harmful and VERY hypocritical. They, like any conspiracy and/or cult only listen to things that confirm their belief that people want to harm them because they have autism.

Me *doesn’t trust any misinformation*

Also me *believes Autism Speaks is a hate group and the puzzle piece that represents a symbol of hate, which passes off as misinformation*

I think it’s time to accept the fact that a lot of users on deviantART (such as ArthurEngine, Tobymavisforever, etc), YouTube, Twitter (such as Jason the Cartoon Fan), Facebook, TikTok, tumblr, Instagram learn to live with Autism Speaks because it ain’t shutting down anytime soon. Doing stuff like clickbait content and hate art won’t make the organization disappear. It basically makes the Teen Titans Go! hatedom look tame by comparison.

I recently came across a few posts that implored people not to give to Autism Speaks and I wondered what it was all about. I’ve been reading articles on both sides of the debate to try to educate myself. I am left with one question that I keep coming back to, that can only be answered by people who have autism. In the pieces that are anti- Autism Speaks, it keeps coming down to the fact that they feel like their diagnosis is being treated like a disease, instead of just a naturally occurring neurodivergence. They don’t want to be “cured” but accepted. They don’t feel it is something a parent has to grieve and they don’t appreciate the negative connotations. It occurred to me that this may be coming from a privileged standpoint, so to speak. What about the people with higher lever Autism diagnosis? The people who struggle with being able to communicate to the point that they have no “voice”, the people with sensory issues so severe that they can not eat, leave the house, etc? These are not the people celebrating their differences. To them, Autism has profoundly affected their ability to live their lives. If they were able to cure some of the things that keep them from being able to independently live their lives, woukd their answer be different? Are these people speaking for them, as well? I’m not trying to be offensive but I’d really like to hear thoughts on this.

Butthurt Autism Speaks deniers: aUtIsM sPeAks ssUxXxXx!!11!!!111! tHeY wAnT 2 cUrE us!!11!!!111! aUtIsM sPeAkS hAtE aUtIsTiC pEoPlE!!11!!!111! tHe bUlE pUzZlE iS a hAtE sYmBoL!!11!!! dOn’T lIgHt iT uP bLuE!!11!!! Grover: Hey! Leave them alone! Big Bird: You don’t deserve us you toxic deniers! Julia: You are NOT welcome here! Percy: Autism Speaks is a hate group? Such delusion. Pah Gordon: This propaganda is disgraceful. James: Misconceptions are disgusting. Henry: False misinformation on an autism-based organization is despicable. Thomas: Cinders and Ashes. Those type of people do not deserve any attention. Elmo: Elmo doesn’t like misinformation-blinded fools. Cookie Monster: RAAAAARGH!!!! ME NO LIKE AUTISM SPEAKS/ABA MISCONCEPTIONS!!!!! RAAAAARGH!!!! Blue the Dog: *blows a raspberry to the deniers* Bert: Why I oughta… Barney the Dinosaur: And I thought I was delusional. The Count: These type of people are so delusional! Ah… ah…ah! Edward: Bust my buffers. Sir Topham Hatt: You people that fall for misconceptions like this have caused confusion and delay. Toby: Can’t these people just learn to get along with others that support Autism Speaks and ABA? Gee.

Did you just come out of the womb? This is a genuine question and I’m curious if you’re just a stupid little kid or a stupid adult with no friends

Sane and respectful Autism Speaks hater: Look, me and my friend may hate Autism Speaks but we can handle and respect your opinion if you like or love it. Besides, I love your content, including your blog.

Toxic Autism Speaks hater: HOW DARE YOU LOVE AUTISM SPEAKS!!11!!! YOU DON’T DESERVE RESPECT! THAT ORGANIZATION DISRESPECTS AUTISTIC PEOPLE!!!11!!! WE WILL WRITE A CALL OUT POST ON YOU BECAUSE YOU NEED TO TAKE CRITICISM! STOP SUPPORTING AUTISM SPEAKS! IT IS A BAD ORGANIZATION! SELF-DIAGNOSED AUTISTIC LIVES MATTER!!11!!! REEEEEEEEEEEEE!!11!!!

It’s utterly insane how many people act over an autistic based organization. I’m looking at you cartoonaboos.

The hate Autism Speaks gets and the things people do and say, like making terrible propaganda art, bullying, vandalizing, etc, is extremely embarrassing and just pathetic.

People like this make me sick. Autism Speaks may not be the best thing in the world but it’s what we got for a long time and your entitled to your opinion but when you hurt others, that’s not okay.

https://pbs.twimg.com/media/F9VYKVUa4AALo7g?format=jpg&name=900×900

Doing disgusting stuff like this is actually considered a crime. Did you know that?

Frank Sterle Jr.

As a boy with an undiagnosed autism spectrum disorder, my Grade 2 teacher was the first and most formidably abusive authority figure with whom I was terrifyingly trapped.

I cannot recall her abuse in its entirety, but I’ll nevertheless always remember how she had the immoral audacity — and especially the unethical confidence in avoiding any professional repercussions — to blatantly readily aim and fire her knee towards my groin, as I was backed up against the school hall wall.

Luckily, she missed her mark, instead hitting the top of my left leg. Though there were other terrible teachers, for me she was uniquely traumatizing, especially when she wore her dark sunglasses when dealing with me.

But rather than tell anyone about my ordeal with her and consciously feel victimized, I instead felt some misplaced shame: I was a ‘difficult’ boy, therefore she likely perceived me as somehow ‘deserving it’.

I was much too young to perceive how a regular-school environment can become the traumatizer of susceptible children like me; the trusted educator indeed the abuser.

Perhaps not surprising, I feel that schoolteachers should receive mandatory ASD training, especially as the rate of diagnoses increases. There could also be an inclusion in standard high school curriculum of child-development science that would also teach students about the often-debilitating condition (without being overly complicated).

If nothing else, the curriculum would offer students an idea/clue as to whether they themselves are emotionally/mentally compatible with the immense responsibility and strains of regular, non-ASD-child parenthood.

It would explain to students how, among other aspects of the condition, people with ASD (including those with higher functioning autism) are often deemed willfully ‘difficult’ and socially incongruent, when in fact such behavior is really not a choice.

And how “camouflaging” or “masking,” terms used to describe ASD people pretending to naturally fit into a socially ‘normal’ environment, causes their already high anxiety and depression levels to further increase. Of course, this exacerbation is reflected in the disproportionately high rate of suicide among ASD people.

As for my own autism-spectrum disordered brain, at age 56 I still am ‘undiagnosed’ [due to official-diagnosis unaffordability], though that means little to me. It’s an obvious condition with which I greatly struggle(d) while unaware until I was a half-century old that its component dysfunctions had formal names.

I’m sometimes told, “But you’re so smart!” To this I immediately agitatedly reply: “But for every ‘gift’ I have, there are a corresponding three or four deficits.” It’s crippling, and on multiple levels!

Besides the ASD, I also ‘live’ with a formidable combination of adverse childhood experience trauma and high sensitivity, the ACE trauma in large part being due to my ASD and high sensitivity. I self-deprecatingly refer to it as my perfect storm of train wrecks.

Coexisting with and seriously complicating this vicious combination is “core shame”. While my father had an ASD about which he wasn’t formally aware, my mother had suffered a nervous breakdowns and perhaps even postpartum depression that transpired around the time I was born. If so, it likely would have excluded shared/joyful interaction with me as an infant.

It would greatly help explain why I, among other debilitating traits of core shame, have always felt oddly uncomfortable sharing my accomplishments with others, including those closest to me. And maybe explain my otherwise inexplicable almost-painful inability to accept compliments, which I had always attributed to extreme modesty.

Thus, it would be very helpful to people like me to have books written about such or similar coexistent-condition life tribulations.

Largely as a result of the abovementioned, I’ve suffered enough unrelenting ACE-related hyper-anxiety to have known and enjoyed the euphoric release upon consuming alcohol and/or THC. However, the self-medicating method I utilized during most of my pre-teen years was eating, usually junk food.

While low-functioning autism seems to be more recognized and treated, higher-functioning ASD cases are typically left to fend for themselves, except for parents who can finance usually expensive specialized help. But a physically and mentally sound future should be EVERY child’s fundamental right, especially considering the very troubled world into which they never asked to enter.

Internalized ableism is bad and you should feel bad, especially if you’re autistic and support Autism Speaks.

You people are unbelievable on here! Everyone is passionate about how they feel about autism and Autism Speaks. However, acting barbarous and demeaning is vile. We can all share our thoughts and opinions without attacking each other’s comments. If you don’t support Autism Speaks then just say so and move on. There is no need to criticize this person’s personal experience. I see this time and time again on blogs and social media. Groups of people are being so nasty. Are we not supposed to support each other? Are we not supposed to be encouraging kindness and acceptance? Dear God, what is this world coming to if we don’t live by what we preach?

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Jackie Schuld Art Therapy Blog

• Feb 17, 2023

The Great List of Autistic Essays

I’m a late-identified autistic who loves writing about autism. How much do I love it? I’ve written over 150 essays on it in the past six months alone.

How do I think of so many autistic topics to write about? I’m an art therapist who specializes in late-identified autistic adults. That means I not only have my personal experience to draw from, but also the hundreds of hours spent listening to my clients.

I share most of my essays here on Medium, which means it has now become quite the library. In an effort to make my essays more accessible to those wanting clear, relatable information about late-identified autism in adults, I’ve sorted my essays into topics below. While I wish I could provide a link to each of them for you… I’ve got to prioritize my time and energy. So if a specific essay interests you, just pop it into the search and it’ll come up

Autism in a Neurotypical World

What Would a World Designed by Autistic People Be Like

The Harm in "They're a Little Autistic"

Autism Does Not Directly Cause Socializing Problems

Please Trust My Lived Autistic Experience

Can Someone Please Create a Neurodivergent Intentional Living Community

What if I Accept that Most Neurotypicals Won't Like Me

How Neuro-Bias Shows Up in Professional Testing

Your Autistic Experience Sounds Just LIke my Neurotypical One

Neurotypical Words that Don't Work for Autistics: Overachiever

But Neurotypicals Experience That, Too!

Neurotypical Norms That Don’t Work for Autistics: Hustle Goals

The Fear of Being a Hypocritical Autistic

Neurodiversity: Us vs Them?

How to Meet an Autistic Adult Exactly Where They're At

Autism Characteristics

The Autistic Mind Loves to Take Detours

4 Reasons Why Autism Symptoms Lists are Confusing

My Autistic Brain: Sunshine and Detours

The Joys of Being Autistic: Part 1

Stop Saying Autistic People Can't Empathize

Redefining Fun for Autistic Adults

9 Reasons Why Autism Looks So Similar to CPTSD

We Need More Depictions of the Interior Experience of Autism

Clarity is What my Autistic Mind Craves

How Trauma and Autism Can be a Confusing Mix to Decipher

Why am I like This? Understanding the Autistic Brain

My Autistic Mind Does What it Wants

The Dissociated Autistic Performance State

The Joys of Being Autistic: Increased Creativity and Innovation

My Autistic Memory Is Not the Same as Others

The Firehouse Dilemma: Autism and Infodumping

The Variability of the Autistic Sensory System

5 Reasons Autistics are Especially Hard on Themselves

The Shame That Often Accompanies Autism

Knowing You’re Different as an Autistic Adult

3 Reasons Autism is Worse After You Learn You're Autistic

Disability and Internalized Ableism

I Had to Dismantle My Fear of Autistic People

Is Autism a Disability?

I’m Ok With Saying I have a Disability, Right?

Dog Training

The Difficulties of Adjusting to a New Dog When You're Autistic

Tips for Adjusting to a New Dog When You're Autistic

5 Tips to Integrate a Dog into Your Autistic Life

Defining and Explaining Autism

What I Wish Others Knew About Autism

Let’s Drop the “Disorder” From Autism Spectrum Disorder

How Low and High Autism Labels are Misleading

We Need All the Autism Theories and Models

Autism Can Be a Murky Thing To Understand

How I Explain Autism to Someone Unfamiliar With It

What is Late Identified Autism

Autistic Statistics are Not Accurate for Late-Identified Autistics

I'm Here for the Autistic Awakening

How It Helps to Know You’re Autistic

Why It Matters to Know You're Neurodivergent

What is Neurodiversity and Why Does it Matter

How Neurodivergent Acceptance Can Improve Our Lived Experiences

How Unidentified Autistics are Taught to Socially Camouflage and Mask

Is There a World Where I can Be Unmasked?

The False Dichotomy of Masked and Unmasked Autism

6 Reasons Why UnMasking Is Harder Than it Sounds

What if You have to Mask Everywhere?

My Personal Experience as an Autistic

Hating Cooking as an Autistic Adult

I Make Giant Lists About Autism for Fun

The Challenges of Writing Publically About Autism

The Risk of Sharing my Autistic Passions with Others

I'm Reclaiming Weird for My Autistic Self

I Expand and Then I Contract

I Stopped Seeing Myself As Broken When I learned I was Autistic

Respecting my Limits as an Autistic Business Owner

I Need to Lessen the Pressure on my Autistic Self

My Autistic Brain Doesn’t Want to Watch TV Right Now

Embracing Who I am as an Autistic Adult

I Used to be a Very Judgemental When I Didn’t Know I was Autistic

A Letter from An Autistic Adult to Trust

Don’t Get So Upset: A Line that Doesn’t Work for This Autist

Why This Autistic Writer Didn't Respond to Your Comment

Relationships

Is Dating Worth it as an Autistic Adult?

Is it Possible to be Happily Partnered as an Autistic Adult?

Not Liking People as an Autistic Adult

Self-Identification

So You Think You Might Be Autistic

Dearly Newly Identified Autistic Person

Am I Actually Autistic?

Dearest Smart, Weird, and Caring Autistic

I Am Deeply Unsure About Autism

How to Self Identify Autism as an Adult

When the Past Makes Sense after a Late-Identification of Autism

Where to Start When You First Learn You’re Autistic

6 Strategies to Harness the Hyperfocus Power of an Autistic Mind

Leave the Gremlin In the Cave: Self-Isolation as a Necessary Autistic Tool

No Plans Days as an Autistic Tool

Making Accommodations for Myself as an Autistic Adult

How Many Accommodations Can We Ask for as Autistic Adults?

Using Art to Help Your Autistic Mind

Dissociation as an Autistic Tool

The Power of the Home Environment for Autistics

Is It Ok to Honor My Autistic Needs?

Recognizing When It's Not Time to Make Decisions as an Autistic

Therapy for Autistics

Dearest Autistic Client of Mine

8 Ways Therapy Can Help With Late Identified Autism

Gaslighting the Autistic Experience

Dearest Therapist Who Knows Barely Anything About Autism

I'm an Autistic Therapist: Sometimes It's Easier Than Everyday Life

Does Your Therapist Know Enough About Autism to Help You?

Questions to Ask a Potential Therapist When You're Autistic

How I Work with Newly Identified Autistic People

What to Ask When You're Seeking Therapy for Late-Identified Autism

12 Ways Therapy Can Enhance Life for Late Identified Autistic Adults

Therapy is Not for Fixing Autism

The Harm I Caused When I Didn't Know about Autism

A Newly Identified Autistic Therapist Working with Newly Identified Autistics

Common Therapy Advice That is Counterproductive for Autistics

A Therapist Told Me Treating Autism is Like Treating Depression

Who Can Diagnose Autism in Adults?

Autistic Adults Deserve Better from the Mental Health Field

Undiagnosed Autism

The Correlation Between Intelligence and Undiagnosed Autism

10 Consequences of a Life with Unidentified Autism

The Gap Between “Diagnosable Autism” and a Lifetime of Unidentified Autism

Autism Diagnosis Criteria are Limiting for Men Too

No Autistic Should Receive a Diagnosis Letter Like Mine

Identifying Autism in Undiagnosed Women Abstract

How I Identify Autism in Undiagnosed Women

Autistic Stereotypes Block People From Knowing They're Autistic

Thank you for reading. If you’d like to read more, sign up for my FUNletter . If you would like to explore your autistic identity with an autistic therapist, you can learn more about my therapy services here .

Recent Posts

My Autistic Sensory System is a Demanding, Bougie Princess

My Autistic Silence Does Not Mean Agreement

This Autistic is Quitting the News

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• Newsletters

Driver speaks about medical emergency after crash injures Franklin Co. family

‘i would like to ask them one day for forgiveness, if they’re able’.

Lindsey Kennett , Weekend Anchor / Reporter

FRANKLIN COUNTY, Va. – Joshua Wright doesn’t remember much about the crash that sent a Franklin County family to the hospital Tuesday night. From his hospital bed on Friday, Wright talked to 10 News about what happened that tragic evening when he was behind the wheel.

“I was mowing the yard. I got done mowing at my dad’s and so I decided to go to Dollar General and get some snacks,” said Wright. “My mentor, he called me and I put him on the phone. And we were talking and I said, you know, I’m going to have to pull over, I’m getting a little lightheaded.”

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Wright said he felt a pain under his left rib cage, but attributed it to a kidney stone. Wright said at that point he had trouble with his vision.

“And then I got this foul odor like fingernail polish remover in my nose. So I told him I needed to get off the phone. I’d hate to guess, but it was seconds and I was out,” said Wright.

Wright said his phone log shows he made a call to 911 for his medical emergency at 8:48 p.m., three minutes before the crash.

When Wright regained consciousness, he said he turned around and saw that the car had gone through the house.

”I heard screaming. I originally went the wrong way, then I crawled up around the house. I heard the man saying ‘Where’s the baby?’” recalled Wright. “Hearing those babies’ screams, I’m never gonna get that sound out of my head. It’s the most horrible thing I’ve ever experienced in my life.”

“I’m just bruised up. That’s what hurts the most,” said Wright.

Doctors said Wright had a seizure.

“With the smell in my nose and everything, they’ve come to the conclusion that it was epilepsy. And they’ve started me on a few medications which have helped.”

Wright provided 10 News with medical records confirming he had a seizure and was diagnosed with epilepsy.

Virginia State Police are still investigating the crash. VSP’s Public Information Officer Sgt. Rick Garletts confirmed that Wright was on the phone with someone complaining about his medical issue before the crash, but Garletts has ‘no knowledge if he was on the phone at the time of the crash.’

Troopers are working to confirm if the cause of the crash was a medical emergency and how fast the car was traveling. Investigators say Wright’s driver’s license was suspended at the time of the crash. However, Wright says he didn’t know until police came to see him at the hospital after the crash.

“I still to this point don’t know the reason why,” said Wright. “I’m thinking it’s for an unpaid traffic ticket.”

Wright provided 10 News with a copy of a DMV notice informing him that his license is suspended. It was signed by Wright and a state trooper on Wednesday, April 24—the morning after the crash.

“I’m sorry that this has happened. It’s just something I couldn’t control. It’s not like I could have pulled over any sooner,” said Wright. “I’m beating myself up, but at my heart I know there was nothing I could do.”

Court records show several charges against Wright over the years, including driving offenses. 10 News asked him about his past.

“I lost my brother to addiction and I’ve been clean for 3 years on drugs, 2.5 [years] on alcohol,” said Wright. “All my records in the past has been [due to] drinking. It’s all stuff like, just immature stuff. Just young and dumb.”

Wright says he is fully insured and hopes the family can make a claim to recoup money for the damages. Devastated, Wright is only asking for prayers and support for the family.

“I just want them to know that our prayers and thoughts are with them and whatever they need we’re there for them,” said Wright.

10 News spoke with Thomas Dean over the phone, who lived at the home. He said he is in a daze knowing he almost lost his family.

A GoFundMe has been created for Dean’s family. The Boones Mill Elementary School PTO also created a fundraiser to assist the Dean family since they lost everything in the crash.

“I just want this family to get the help they need. I would like to ask them one day for forgiveness, if they’re able,” said Wright. “It’s just something that’s going to take awhile to forgive myself.”

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Lindsey kennett.

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