By: Marissa Sison, Columnist
Views expressed in opinion columns are the author’s own.
Autism Speaks is one of the largest autism nonprofits. Many autistic people, including the members of the Autistic Women & Nonbinary Network, have called out the group as a hate group, pretending to be inclusive, while practicing exclusive tactics. While Autism Speaks claims to be a resource to help autistic people, they do more harm than help.
April is Autism Acceptance Month (AAM). Started by Paula Durbin Westby in 2011, AAM focuses on accepting autistic people as they are rather than simply being aware that autistic people exist.
Towson University recommends Autism Speaks as a resource for families of autistic children. Additionally, Alpha Xi Delta, a sorority that supports Autism Speaks as their philanthropy, has a chapter on campus. Alpha Xi Delta promotes Autism Speaks and raises money to donate to them.
To begin, the board of directors for Autism Speaks is composed of one autistic person and 27 allistic people. The board is not representative of those they fight for equality for, and this is just one of many ways the group has failed the autism community, already a huge problem as is.
The symbolism that Autism Speaks chooses is condescending and misleading. They have claimed the puzzle piece symbol they choose to represent their organization, which symbolizes their search for answers that will lead to a deeper understanding autism. The use of the puzzle piece to represent autism dates back to 1963 because it was considered a puzzling and mysterious condition.
The National Institute of Health recommends avoiding puzzle-piece-symbolism, and in a poll they conducted, it was proven that puzzle pieces have a negative connotation due to people associating puzzle pieces with “incompleteness, imperfection and oddity.” Autistic people are whole people, not people missing a piece or puzzles that need to be solved, and the puzzle piece symbolism opposes this.
One of the largest issues regarding Autism Speaks is their support for applied behavioral analysis (ABA). ABA is behavior modification using rewards and punishments as motivation. Rather than teaching autistic people how to self-regulate and accommodate themselves, ABA punishes autistic people until they become compliant, training people to hide their autistic traits.
Originally, ABA included electrical shocks as a punishment for children that did not behave in the way they were told to behave. Dr. Ole Ivar Lovaas, the creator of ABA, later used the same techniques to create gay conversion therapy, which is banned in 20 states and Washington D.C. ABA providers claim that it is different now because they have removed the tortuous elements of it, but the reward and punishment principle remains.
In a study conducted by Henny Kupferstein, an autistic autism researcher, survivors of ABA were 86% more likely to meet PTSD criteria than people who were not exposed to ABA. Organizations run by autistic people, like the Autistic Self Advocacy Network, condemn the use of ABA because the purpose of it is unethical and does not provide support to the individuals that receive it.
Additionally, in 2019 and 2020, the U.S. government reported that ABA does not produce the desired results. The research they did could not prove that ABA is effective because “changes [were] small and may not be clinically significant.”
Recently, Autism Speaks partnered with Sia and promoted the movie she directed, “Music,” which was supposed to be a “love letter to caregivers and to the autism community.” It received criticism for casting an allistic actress as an autistic character, rather than including an autistic person that could accurately understand and represent the autistic community.
In the movie, restrainment, which is also traumatic and can result in death, was depicted as a beneficial method for helping autistic people. “Music” was nominated for two Golden Globes, Best Picture – Musical/Comedy and Best Actress – Motion Picture – Musical/Comedy, and over 150,000 people signed a change.org petition requesting for the nominations to be rescinded because of the caricature-like representation of autism and the misinformation it spread.
Additionally, the media Autism Speaks has created regarding autism treat it as a horrible disease that needs a cure, rather than a neurological difference. A short film they released in 2006 called “Autism Every Day” focused on parents of autistic children who claimed they had to give up their lives because of their children, rather than focusing on their autistic children. One parent considered committing filicide by putting her autistic child in her car with her and driving off of a bridge, but only decided not to because she had another child.
While these parents may have needed more support than they were getting, murdering a person because they are autistic should never be considered a viable option. Their “I Am Autism” ad, released in 2009, portrayed autism as an evil entity, comparable to cancer, that desired to rob people of their hopes and dreams, destroy marriages, bankrupt people, ensure loneliness, embarrassment and pain.
Until 2015, Autism Speaks had an anti-vaccination position because they believed they caused autism, which is not true. While they have rebranded and no longer support these positions on their website, the damage has already been done and their stance and credibility is questionable.
Despite these claims Autism Speaks makes about the money they receive creating a meaningful impact on the lives of autistic people, only 1% of their money is spent directly supporting autistic community.
If you are looking to support autistic people, use information coming from an autistic-led organization, like the Autistic Self Advocacy Network or the Autistic Women & Nonbinary Network, and donating to them if you are able. These organizations allow people that are autistic to advocate for their needs, while Autism Speaks shouts over the voices of a majority of autistic people.