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Don’t support Autism Speaks this April

The logo of Autism Speaks. Used for identification purposes.

From April 1 to April 30, it is Autism Awareness and Acceptance Month. Part of autism awareness and acceptance is listening to autistic people in their experiences and how they feel about representation of autism. Many autistic people have spoken out against Autism Speaks, a self-described autism advocacy charity, and the largest autism research organization in the United States. 

Autism Speaks is infamously known for their puzzle piece logo, which is one of many critiques that they’ve received over the years. Autistic people have pushed back on the puzzle piece logo that dates all the way back to its first use in 1963 by the National Autistic Society in the United Kingdom, because it originally stemmed from the notion that autism was a “puzzling condition” (1). While some autism research related journals have decided to move away from the puzzle piece logo based on research and feedback from the autistic community, Autism Speaks has decided to change only the color of their blue puzzle piece into a multi-color puzzle piece to signify the spectrum of autism (2). In a public statement, Autism Speaks said, “The blue Autism Speaks puzzle piece has had a huge influence on raising awareness of autism around the world… It represents the search for answers that will lead to greater understanding and acceptance of people on the autism spectrum, their diverse challenges, abilities and strengths” (3). The issue with this argument is that they are using a logo that is offensive to the autistic community in order to “raise awareness”, but ultimately they mean “raise profits” for the lining of their own pockets. Furthermore, Autism Speaks has only existed since 2005. Within 17 years of raising awareness, they’ve created a strong association with the puzzle piece, autism and their charity, and have ultimately caused harm to the autistic community by doing so. 

Autism Speaks has also been criticized for their referencing of autism as an “epidemic,” and supporting efforts to find a cure to autism, although there is not one, because autism is not a disease but a neurological disorder, such as ADHD.  In 2016, they responded to the criticism by removing the word “cure” from their mission statement on their website (4).

Another issue connected to Autism Speaks was Parade’s 2008 publication of an op-ed written by Suzanne Wright, cofounder of the charity, in which she used inaccurate statistics and gave an unfair representation of the lives of autistic people. While today, Parade has deleted all digital footprints of Wrights’ text, the Internet is not a forgiving place, and rebuttal articles have republished it in order to talk about the damage that op-ed caused. When talking about her grandson’s diagnosis with autism, Wright said, “we mourned the loss of the little boy we knew and all we hoped he would become someday.” Wright’s description of her grandson’s experience didn’t specify that all autistic people have a different place on the spectrum, and that good days were still possible when raising a child with autism (5).

A more recent critique people have of Autism Speaks is their lack of representation on their board of members. There are 28 members of the Board of Directors at Autism Speaks, and only a single one is on the autistic spectrum (6). How can you expect those who don’t experience life as an autistic person to be able to identify the problems and advocate for the needs of those that Autism Speaks serves?

Perhaps the most egregious problem that people have recently had with Autism Speaks is their budgeting. In Autism Speaks’ 990 Non-Profit Tax Exemption Form in 2018, they used one percent of their profit towards family services, while 20 percent was spent on fundraising (6). Clearly, they are prioritizing the wrong things in this “charity.”

This April, celebrate Autism Awareness and Acceptance Month by doing research on charities that support, serve and prioritize the autistic community. 

  1. https://themighty.com/2021/03/autism-puzzle-piece-problem/

  2. https://www.autismspeaks.org/blog/introducing-new-autism-speaks

  3. https://www.disabilityscoop.com/2018/02/02/autism-journal-abandons-puzzle/24668/

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

  5. https://autistichoya.net/2016/08/12/parade-2008-autism-changes-everything-by-suzanne-wright/

  6. https://autisticadvocacy.org/wp-content/uploads/2017/04/AutismSpeaksFlyer2020.pdf