The Problem with Autism Speaks

This is my synthesis essay that I wrote for AP Language and Composition/whatever the AP English was called for juniors. At a loss at thinking of a topic to write about that I know I could find a lot of sources on and that I actually cared about, autism here we go.

“Autismo” is one of the new ‘hip and cool’ insults that the kids are using these days. Most of those people often only have vague background knowledge on autism, let alone on the discourse of the community. Autism Spectrum Disorder (ASD) is a group of neurological developmental disorders first identified in 1938 by Hans Asperger. Early research showed that autism was different from other intellectual disabilities. ASD usually presents itself early on in life with characteristics such as impaired social interaction, lack of emotional expression, repetitive movements, developmental delays and extreme difficulty coping with changes in routine. The autistic community uses terms like neurotypical and allistic to describe non-autistic people. No cause or ‘cure’ for autism is known, however there are medications and therapies that help autistics cope. The common misconceptions that vaccines cause autism originated in a London magazine in 1998. The experiment violated ethics concerns, had no replicable results and manipulated conclusions. This link between vaccines and autism still exists in many people’s minds and is a growing issue as the reported number of autism cases worldwide has doubled within the last year and according to the World Health Organization, many cases are speculated to go unreported (“Autism”). The organization Autism Speaks is notorious in the autistic community for perpetrating the vaccine myth and others for the promotion of its own agenda. Although they do help some families, Autism Speaks is a hate group because they dehumanize autistic people, focus on finding a ‘cure’ for autism and are not inclusive.

Autism Speaks dehumanizes and silences autistic people. The FBI’s definition of a hate crime is “[A] criminal offence against a person or property motivated in whole or in part by an offender’s bias against a race, religion, disability, sexual orientation, ethnicity, gender or gender identity”, and the Southern Poverty Law Center (SPLC); a group dedicated to maintaining civil rights, educating people in the forms of advocacy and fighting hate, defines a group as “an entity that has a process through which followers identify themselves as being part of the group” (“Frequently Asked Questions about Hate Groups”). Although Autism Speaks has not yet reached the ‘criminal offense’ stage of the combined definitions, they do appear to be a group that does not like autistic people. Autism Speaks was founded in 2005 by allistic grandparents of an autistic child aimed to help families with autistic children. Steve Silberman, who has given numerous speeches about autism and the advocacy of autistics wrote that Co-Founder and NBC Universal Chairman Bob Wright has repeatedly referred to autistic children as ‘missing’ and his wife, Suzanne, is not any better (Silberman). According to Sarah Hands, a journalist from Washington University in St. Louis, Suzanne Wright gave a speech in 2013, where she defined autism as synonymous with terror, compared autism with a massive physical disappearance of children, claimed that families with autistic children are ‘not living’ and called the whole ordeal a “fatal global health crisis” (Hands). Children aren’t actually dying, but this idea is not new to Autism Speaks, as they presented a video to the UN in 2009 called “I am Autism”, which has since been taken down from the web (Ouyang). The video is ‘narrated’ by the disembodied adult voice of autism, where it claims that autism “work(s) faster than pediatric AIDS, cancer and diabetes combined” and that autism “will plot to rob you of your children and your dreams” Isabelle Ouyang, a journalist from the University of Pittsburgh claims that this “ad capitalizes on the dehumanization of autistic children” and resorts to portraying autism deeply sinister rather than a child with complex needs and behaviors. As Silberman said, Autism Speaks was started by non-autistic people, making it easier for the SPLC’s definition of a hate group to apply; it’s easier to have bias against a demographic when you are not a part of it. Silberman and Hands agree that the founding couple use horrible words to describe the group they aim to help, and Ouyang confirms that this issue extends to material released from the organization as a whole, meaning that their public image is associated with calling autism a disease. When starting an organization to help families understand their children, get help and cope with their lives, that message should prevail over any other actions the organization takes. Autism Speaks’ financial plan does not align with that idea.

Autism Speaks focuses the majority of its budget on a ‘cure’. For an organization founded to support families with autistic children, the financial records sure don’t agree. Directly from Autism Speaks themselves, they assert that “since [their] inception, [they have] committed more than $570 million to [their] mission, the majority in science and medical research” (“Autism Speaks: CDC”). In Autism Speaks’ 990 Non-Profit Tax Exemption Form, curated by Nick Hughes, an autistic man of Millersville University in Pennsylvania, less than two percent of their budget is used for family services. This could be reasonable; depending on what the rest of their money is used for. Hughes claims that the money that Autism Speaks receives is used mainly for lobbying, as 42 percent of their annual 60 million dollar budget goes toward ‘awareness’ (Hughes). What he means by lobbying is that Autism Speaks takes actions to spread its agenda: spreading awareness and fear of autism to get people to donate to them, usually to find a ‘cure’. Silberman agrees with Hughes here, as he claims that Autism Speaks sets the global scientific agenda (Silberman). Hughes backs him up with more information from the tax exemption form, where 32 percent of the organization’s budget goes toward research (Hughes). In 2011, Autism Speaks partnered with the Beijing Genetics Institute to launch an effort to identify the genes responsible for autism at a cost of 50 million dollars (Silberman). On its own, this fact is not cause for concern, but paired with the other offenses toward autistics and under the SPLC’s definition, it becomes scary. With the dehumanization and large amounts of money to try and rid the world of this disorder, it starts to sound more and more believable that Autism Speaks is a hate group. Ouyang reinforces Hughes’ claim that Autism Speaks spreads awareness and fear as in her article where she quotes Cori Frazer, the president of the Pittsburgh chapter of the Autism Self Advocacy Network (ASAN), in saying “when you’re listening to this constructed narrative that your child has an awful disease and is going to break up your marriage, and Autism Speaks is working on a cure, of course folks donate” (Ouyang). Instead of trying to help families by funding social therapies or medication, which are known to help autistics cope, Autism Speaks wants people to be afraid of their children and completely get rid of the things that make them unique. As Frazer said, “Autism Speaks makes people afraid, and fear is powerful” (Ouyang).

Autism Speaks is discriminatory and non-inclusive. The organization was founded to help families with autistic children and only helps those with small children. Only two percent of studies funded by the National Institute of Health, with help from Autism Speaks, were focused on autistic adults (Silberman). To aid Silberman’s argument, Ouyang brings in a quote from a mother of an autistic child that had early intervention therapy through the help of Autism Speaks. Cathy Hughes, the Senior Coordinator of Autism Speaks Pittsburgh has admitted that “The motto [of Autism Speaks] used to be ‘early intervention is key’, but many of our kids have grown up … our kids were younger when the organization first started,” and that “[Autism Speaks] could be doing better” (Ouyang). As Silberman has said, Autism Speaks was founded by allistic people, which is an alright fact on it’s own. But in the decade that the organization has existed, only two autistic people have served on the 26 person board of directors (Hughes). That is seven percent of the team that runs the organization. The most notable former member is John Elder Robinson, who resigned in 2013. He is an autistic man and has written three memoirs. According to Hands, he wrote about his decision to leave the Science and Treatment board, saying that “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” (Hands). Hughes comments on this issue by saying “as an autistic person [he] think[s] that [his] opinion on what is good for autistic people should be [his] own” and that “there is no backing for proof for [people’s] claims. Autism Speaks does not understand [his] autism and [he] doubt[s] they ever will” (Hughes). Ouyang includes quotes from Frazer, the president of the Pittsburgh chapter of ASAN, and Hughes elaborates on the group, explaining how most, if not all members of ASAN are autistic and that they “work to empower autistic people across the world to take control of [their] own lives”, including the motto of the group: “Nothing About Us Without Us” (Hughes). Here is a group created for autistic people, by autistic people, dedicated to the betterment of their demographic and an organization that barely has representation in the internal structure of the group they aim to help.

Autism Speaks has recognized some of their problems. The organization has increased autism awareness, although it may not have been done in the best way. As mentioned by Ouyang in her article, Autism Speaks has a great focus on early intervention and it works. And they admit that they need to change. They appointed two autistic board members in 2015 who are still serving, and acknowledge the demographic statistics (Ouyang). In an article published by PR Newswire, Angela Geiger, the CEO and President of Autism Speaks said in 2016 that “It’s vital for us to remember that the 1 in 150 children counted in the first 2007 CDC prevalence report are now adults … while some individuals are thriving, many, many others need personalized support and services to reach their full potential” (“Autism Speaks: CDC”). More recently, in 2020 Autism Speaks announced they are working on changing their image. In an article by Madeline Coe, a journalist under PR Newswire quotes Geiger in a statement made in February: “So much has changed in the world of autism since we were founded … With 15 years of momentum and learning behind us, we chose this moment to reintroduce ourselves to the world” (Coe). In response to criticism about their logo, Autism Speaks has changed their blue puzzle piece to a multicolor puzzle piece. Geiger comments: “Over the years, we have heard from the vast and diverse autism community - from our supporters to our critics” (Coe). How wonderful, this organization is acknowledging its faults, but it still has a long way to go. Many autistics feel like the puzzle piece in Autism Speak’s logo symbolizes that autistic people are incomplete and are missing a piece (Hands). In response, the neurodivergent community, consisting of people with a wide variety of conditions and disorders, has adopted a multicolor lemniscate, or infinity symbol as the symbol of neurodivergence.. They feel like this better represents the many unique individuals who live on this planet, and the continuous loop leaves no room to debate if something is ‘missing’ from these people. Autism Speaks still uses the puzzle piece, but just with a new coat of paint. And, there is little to no evidence that Autism Speaks has improved relations with the autistic community or changed their programs enough to make an impact within the last five years. They claim to be attempting to change big time in 2020, calling this year its ‘year of kindness’, and only time will tell (Coe).

The organization Autism Speaks has various problems and can be considered a hate group. People should not be supporting any group that has these types of faults. Do not show support for this organization by ‘lighting it up blue’ each April; autism awareness month. Think ‘Red Instead’ which the neurodivergent community has come up with to combat the negative stereotypes perpetuated by Autism Speaks. Do not donate to them, do not participate in one of their ‘walks’. This only helps the definition of a hate group fit over the organization. Instead, think about supporting the various groups founded by autistics, for autistics, like ASAN, or the Autism Women’s Network. These groups go out of their way to help autistic people of all ages to cope with their lives, offer support, and treat autistics like unique people with unique problems instead of helpless children with a monstrous disease. Supporting these other groups forces Autism Speaks to change its focus to helping the current autistic population of all ages, not just children, and to take even bigger steps toward fixing it’s image within the autistic and neurodivergent community.

Although they do help some families, Autism Speaks is a hate group because they dehumanize autistic people, focus on finding a ‘cure’ for autism and are not inclusive. The organization Autism Speaks perpetuates negative stereotypes and stigmatizes autistic people, and if left unchecked, it could continue to use fear tactics to deny agency and support to young and old autistics. The group spreads misinformation, then society as a whole spreads that misinformation as if it were the truth. The facts, without tilt or sway, should be spread. The spread of knowledge is one of the most noble causes and Autism Speaks spreads fallacies. Support an organization that actually has representation in the board of directors, like ASAN. Like their motto says: Nothing About Us Without Us.

Works Cited

“Autism.” Gale Global Issues Online Collections, Gale, 2019. Gale In Context Global Issues

“Autism Speaks: CDC Update on autism shows gap between early concerns and formal

evaluation risking a delay in intervention for children; Autism Speaks calls for personalized medical care, services and supports across the lifespan,” PR Newswire, 31 Mar 2016, ProQuest

Coe, Madeline. “Celebrating 15 Years of Progress, Autism Speaks unveils reimagined a visual identity and effort to make 2020 its ‘year of kindness”: New look reflects the breadth and depth of the autism spectrum, released on Autism Speaks’ 15th birthday in tandem with commitment to inspire one million acts of kindness” PR Newswire, 11 Feb 2020 ProQuest

“Frequently Asked Questions about Hate Groups.” Southern Poverty Law Center, 4 Oct 2017

Hands, Sarah. “Autism Speaks Silences and Stigmatizes People with Autism.” University Wire, 13 Apr 2016 elibrary

Hughes, Nick. “Autism Speaks: The so-called face of autism” University Wire, 3 Oct 2019 elibrary

Ouyang, Isabelle. “Autism Speaks doesn’t speak for Autism.” University Wire, 8 Apr 2016 elibrary

Silberman, Steve. “Autism’s Funding Gap.” Los Angeles Times, 24 Aug 2015 SIRS Issues Researcher