By Kiana and Lorane
Autism Speaks was founded on February 11, 2005 by Bob and Suzanne Wright and is currently the largest autism advocacy group in the United States. They are “dedicated to promoting solutions, across the spectrum and throughout the lifespan for the needs of individuals and their families.” They focus on advocacy and increasing awareness and kindness around the world for people on the spectrum. Nationally, Alpha Xi Delta has been partnered with Autism Speaks since 2009 and raises funds for them annually through various events throughout the year.
This organization has faced its fair share of controversies in the past that have promoted ableism within the community they claim to advocate for. Their mission statement in the past has implied that there is a “cure” to autism and has partnered with and donated to a multitude of organizations that focus on researching various treatments and potential cures. However, there is no “cure” as autism is a neurological and behavioral disorder and not a disease. In the past, they have merged with Cure Autism Now which has donated 39 million dollars to finding a cure. They also work with the Autism Genome Project which partially focuses on developing a screening for prenatal babies to look for a certain gene which would contribute to eugenics.
Autism Speaks’ advertising has also utilized offensive rhetoric and inappropriate analogies such as comparing autism to “being kidnapped, dying of a natural disaster, [and] having a fatal disease.” The organization’s logo, a blue puzzle piece, has also sparked controversy due to both their color and shape. The blue color has received backlash from the community as it perpetuates false gender stereotypes and promotes the idea that autism is more common in boys, making it difficult for individuals with diverse gender identities to receive a diagnosis. The puzzle symbol of the logo has been rejected by many people from the autistic community, arguing that it “promotes the mentality that autistic people are incomplete or are missing puzzle pieces.”
Additionally, the organization lacks neurodiversity as only one member on the board of directors is on the spectrum. Despite protests from members from the autism community, the majority of their leadership team is not on the spectrum and some have in fact, made problematic statements regarding autism. Songwriter Billy Mann, a board member of Autism Speaks, released the advocacy video “I Am Autism” which depicts “images of children with autism, paired with a menacing voiceover that intones: ‘I am Autism…I work faster than pediatric AIDS, cancer and diabetes combined…you have no cure for me…I will plot to rob you of your children and dreams. The truth is, I am still winning and you are scared.’” Autism Speaks have also received criticism regarding their funding as “only 1% of [their] budget goes towards the ‘Family Service’ grants that are the organization’s means of funding services.” Local communities have also stated that Autism Speaks’ fundraising efforts take money away from them without reinvesting it back into their communities, preventing them from providing essential services.
What They’ve Done to Improve
In response to the controversies and criticism they received, Autism Speaks made changes regarding their organization and how they function. In 2016, they updated their mission statement and removed “cure” from it to reflect what their organization currently stands for. They stated that while the organization did fund research to search for a cure when it was first founded, they now know that there is none and have since removed it from their mission statement. Additionally, Autism Speaks recently rebranded their logo to include the colors from the Rainbow Infinity Symbol, which was “created by Autistic people as a protest to Autism Speaks,” but have decided to keep the puzzle piece symbol. In regards to what the organization funds, they state on their website that “eighty-five cents of every dollar [they spend] funds research, advocacy, programs and services, exceeding Better Business Bureau guidelines each year,” 10% goes to fundraising, and 5% goes toward management and general expenses.
For more information on Autism Speaks’ response to the controversies, click this link.
What They Can Still Work On
Unfortunately, there are still many things Autism Speaks need to work on to improve themselves. While they have changed the color of the puzzle piece to include more colors to represent the unique experiences of many people on the spectrum, they have not acknowledged the issue of the logo itself. The puzzle piece still gives off an impression that the disorder is puzzling and something to fix, instead of something to embrace and accept. It would be better for Autism Speaks to address the shape rather than change the color of it and ignore the other issue.
While it is great that they switched their funding to make sure eighty five cents of every dollar goes to research, advocacy, services and programs, they no longer share how much money exactly goes to this and specifically where the money goes. They could be giving seventy three cents of every dollar to advocacy through advertisements and media awareness campaigns which is a great way to promote acceptance, but that would mean maybe services and programs would only get six cents per dollar. This is speculation, however, they need to be more transparent about where exactly the research money goes and what is being researched or where the services and programs money goes and how that is helping families. It is a meticulous criticism, but with their history of controversial decisions, it is necessary.
Finally, they could look into having more people on the spectrum on their board, or at the least, a part of their decision making. They currently have one member on the Board of Directors and one member who is a Vice President who have Autism Spectrum Disorder. The organization should look into having more people on the spectrum on their Leadership Team. Out of their six members on their current leadership team, only one of them mentions having a family member on the spectrum. Some of the other members do have a personal connection in one way or another, but there needs to be more people who would benefit the most from Autism Speaks, in high positions to help the organization do better.
What We Can Do
As the Eta Chapter, there are many things we can do to help people in the autism community, especially locally. First and foremost, we need to educate ourselves on the history of Autism Speaks and what they are doing now. Through this new educational plan with nationals, we should be able to learn more about the organization, how they are helping, and where our money is going. We would still participate in the Autism Speaks Walk as well as donate some of the money we raise from philanthropy events to meet our donation quota. However, we can donate our excess money, time, and energy elsewhere.
Temple University’s chapter of Alpha Xi Delta participates in a fundraising event with the Children’s Hospital of Philadelphia at their Center for Autism Research. On our campus, there are opportunities to work with students Best Buddies and InclusiveU. Best Buddies is an organization that advocates for inclusivity and has different events we can partner with or participate in. InclusiveU has Peer2Peer, Campus Mentoring, and Residential Mentoring for their students. While both of these do not focus specifically on people with autism, as individual members we can be a part of these organizations and some of our sisters already are and have spoken so highly of them.
In addition, we can donate our excess money to The Kelberman Center which is right in Syracuse. They focus on providing families with programs and services that help people with Autism Spectrum Disorder to find ways to address their needs and support them in whatever way they can. Next, the Center for Autism Research and Electrophysiology (C.A.R.E.) is a research team right on our campus that has undergraduate and graduate students all under Dr. Natalie Russo. They “focus on understanding the neurophysiology of sensory processing and multisensory integration” and have different ways to get involved. It is unclear if we can donate our money to them to further conduct more research, but that is something we should look into doing. There is also the Autistic Women and Nombinary Network. They focus on progressing through the neurodiversity movement and committing to disability and gender justice.
These new ideas would be things our chapter would have put in a lot of effort and would change our normal philanthropy direction. This is something that as a whole chapter we would have to dedicate the energy it takes to apply these changes. This will not be an easy change, and would be something we would have to work hard for and care about, but it is a change that should be made.
Autism Speaks has just recently decided to change their approach towards increasing awareness. They have taken baby steps, but will hopefully start to make strides in making their community more inclusive and accepting for people on the spectrum. For now, as a chapter, we can acknowledge their faults and grow from them. We encourage everyone to research more about where our money goes and think about other organizations to spend our energy with.