Many world-famous monuments are undergoing aesthetic changes this month. In support of Autism Awareness Month, monuments and people bask in blue. At the same time, Autism Acceptance Month seeks to promote acceptance of autistic people, a movement started by self-advocates.
Autism Speaks remains a driving force of Autism Awareness Month. Their “Light It Up in Blue” campaign has led monuments and people to wear blue on April 2. This provides an easy way for people and organizations to demonstrate their support of autistic people. What support exactly means varies, although it usually involves donations to autism-related groups.
Yet Paula Durbin Westby, who describes herself as an autistic disability rights activist, began Autism Acceptance Month in 2011 as a reaction to Autism Awareness Month. She, along with many other autistic people, believes that “awareness” campaigns demonize the disorder and often do not include autistic people. People have accused PSAs for Autism Awareness Month of being fear-mongering, often calling the increasing autism rates a “crisis,” or imply that a diagnosis effectively ends the life of the person and those around them. The lack of autistics in Autism Speaks prevents them from giving their viewpoints on the disorder. Westby’s month celebrates neurodiversity and promotes inclusion. Instead of blue, supporters are encouraged to wear red.
Connotatively, awareness and acceptance differ significantly. Knowing a condition or person exists differs considerably from understanding and embracing an individual. The first highlights the “otherness” of the individual. Most importantly, awareness does not involve action: it does not rally for inclusion in classrooms, fight stigmas or promote the idea that autistics do not need to change. Activists argue acceptance is an action which involves people celebrating and understanding autistics.
Because of the high rates of autism spectrum disorder, awareness is not an issue. The CDC’s Autism and Developmental Disabilities Monitoring Network estimates 1 in 68 children have been identified with autism spectrum disorder (ASD), occurring across all racial, ethnic and socioeconomic groups. The prevalence of ASD has increased from about 1 in 150 in 2000 to about 1 in 68 children in 2012.
Americans with ASD number about 3.5 million, which is close to the estimated number of gay and lesbian Americans. Arguing that people are unaware of gays and lesbians is difficult; the same goes for autism. Instead, the struggle is for acceptance. As rates of autism diagnoses increase, increasing numbers of people will know an autistic person, either as part of the family or as a friend.
Autism Speaks’ involvement in Awareness Month has also caused part of the backlash against it. Parents of autistic children, rather than autistic people themselves, dominate the organization, which was originally created by the grandparents of an autistic boy. If a movement to support black Americans was run by whites, many would consider it ineffective or unrepresentative. Many autism self-advocates believe this best demonstrates the organization’s views towards the disorder.
Ari Ne’eman, president of the Autistics Self-Advocacy Network, said Autism Speaks views “the goal of autism advocacy as a world in which autistic people do not exist. We think we should create a world where autistic people are included and can have a good quality of life.”
“Awareness” has often translated into fear under the influence of Autism Speaks. In 2009, “I am Autism” was released: a video with a voiceover that says “I am Autism…I work faster than pediatric AIDS, cancer and diabetes combined…and if you are happily married, I will make sure that your marriage fails.” The video was removed after backlash, although Peter Bell, then executive vice president of Autism Speaks, said there were positive reviews from the autism community. In 2012, the co-founder of the organization, Suzanne Wright, published a piece describing autistic children as missing and detailing their parents’ ever-present fear.
Activists took offense to these and other issues within Autism Speaks. While the organization has done its part to increase awareness, some argue it is now instilling fear and attempting to cure or otherwise eliminate autism and neurodiversity.
Because autism is a spectrum disorder, with a great diversity in presentation of symptoms, advocates differ on opinions about a “cure.” Curing autism, to some, would mean the elimination of all autism, which, to autistic people and their parents, would eliminate those currently with it, as their autism is essential to their personality. Alison Singer, former chief executive of Autism Speaks and parent to an autistic girl, believes her daughter, who has severe intellectual disabilities and self-injurious behaviors, would like to not “be spending time peeling skin off her arm.”
Some organizations and people have moved towards acceptance while still observing Autism Awareness Month. President Obama, in his proclamation April 2, called for “every man, woman, and child, regardless of ability or background, [to be] accepted for who they are.” Apple released a series of videos name-dropping autism acceptance and celebrating the differences of an autistic boy.
Even Autism Speaks declared they want to “go beyond simply promoting autism awareness to encouraging friends and collaborators to become partners in movement towards acceptance and appreciation” this year. Their actions this year, however, seem to be a continuation of previous years–fundraising for their organization, the “Light It Up In Blue” campaign, and some PSAs. These words challenge the ideology behind Awareness Month, showing the need to embrace a new title.