April is known nationally as Autism Awareness Month. During this time, many people speak out about autism and participate in various events and activities such as wearing blue and the Light It Up Blue campaign. Autism Awareness Month is organized by Autism Speaks — a largely known charity and by and large the loudest voice on the topic of Autism. Charities have a very specific place in our society, to do good for the planet we live on, and so it is not often that they are questioned. Larger organizations such as Susan G. Komen for the Cure, Red Cross, and Autism Speaks have an additional layer of credibility because they are so established in our society. Despite this credibility, Autism Speaks speaks without the autistic community in mind.
Founded in 2005, Autism Speaks was created by Bob and Suzanne Wright, grandparents of an autistic child. The intentions of the organization are ostensibly good, but the actions of Autism Speaks routinely silences the autistic community and acts almost as a parental pity party. In 2009, Autism Speaks produced a commercial featuring a voice-over that claims that autism works “faster than pediatric AIDS, cancer and diabetes combined” and that if you are “happily married,” autism “will make sure that your marriage fails.” Autism Speaks regularly compares autism to a death sentence. To a terrible national crisis. “If three million children in America one day went missing – what would we as a country do? If three million children in America one morning fell gravely ill – what would we as a country do?” asks co-founder Suzanne Wright. She claims that because of the additional concern about these autistic children and the need for parenting with some extra attentiveness, that “these families are not living” and they are “in despair. In fear of the future.”
Maybe this is true for some families, but imagine if you were an autistic child. Imagine if your entire life, because of a condition you cannot control, you are depicted as a burden. The reason why your parents divorced. Killing your family. Imagine being described as one of three million lost children. Autism Speaks focuses on the hardships of the families, but not the hardships of the children themselves. The organization vilifies autism in a way that ultimately dehumanizes those with autism in such a way that creates a terror around autism in the United States.
Autism Speaks has spoken for the autistic community, without acknowledging the voices of those actually within the autistic community. In response to backlash that never had Autism Speaks had never had someone with an autism spectrum disorder on their executive board, the organization reached out to John Elder Robinson. Robinson is on the autism spectrum and wrote the popular book “Look Me In The Eye” about experiencing life with autism. Shortly after, Robinson resigned from his association with Autism Speaks claiming that they are not the advocacy group they claim they are and the majority of the autistic community does not support them.
Robinson and many others agree that there need to be greater resources for the autistic community. In some part so does Autism Speaks. Autism Speaks claims that in 2014, 37.4% of their budget goes to family service, awareness, and advocacy. Despite the organizations’ apparent concern for the families of those with autism, only 4% of Autism Speaks’ budget goes to “family service.” The majority of the money is going into awareness — public relations campaigns and advertisements such as Light It Up Blue and sponsorships of popular sports teams.
By representing people in the autism spectrum as burdens, refusing to acknowledge their voices, and using funds to push their agenda as opposed to make an actual impact in the lives of those on the autism spectrum, Autism Speaks is failing to use their voice to do the good they are capable of. With some changes, Autism Speaks could use their resources to create a massive impact, but year after year they fail to do so. Several different organizations such as the Simons Foundation Autism Research Initiative and the Autistic Self Advocacy Network whose motto is “Nothing About Us, Without Us” push for inclusion and accurate advocacy of the needs of the autistic community or quality research and scientific advancements of Autism Spectrum Disorders. Despite their work in the autistic community, these groups and many others are often overlooked in favor of Autism Speaks. As society has the tendency to bandwagon and blindly support charities we know little about, these groups will continue to struggle. This Autism Awareness Month, ask yourself — are you aware of what you are supporting?
