Autism Awareness Day occurs every year on April 12. Originally created by the United Nations (U.N.) during the 2008 General Assembly, it has since been expanded by various organizations to the entire month of April, and has become Autism Awareness month.
Autism Awareness Day was started because, according to the U.N., “the rate of autism in all regions of the world is high and the lack of understanding has a tremendous impact on the individuals, their families and communities.”
Since 2008, the biggest organization involved in Autism Awareness has been Autism Speaks (AS), whose puzzle piece logo can be found all over the “Light It Up Blue” awareness campaign. This is a worldwide campaign where every year on April 2, buildings and monuments are covered in blue lights and there are races full of people dressed in blue puzzle piece shirts. However, despite its mainstream prominence, Autism Speaks is largely unpopular within the autistic community.
From their 2009 video, “I am autism”─which describes autism as a thing that “knows where you live” and “works faster than pediatric AIDS, cancer, and diabetes combined”─to only one of their 31 board members being autistic, Autism Speaks has a well documented history of speaking over autistic people. They focus instead on fundraising money for gene research, to find a cure to what they consider a tragedy to befall families.
They also support organizations such as the Judge Rotenberg Center (JRC), and the use of Applied Behavior Analysis (ABA) therapy. JRC is an institution in Massachusetts for children with disabilities, which is the only center in the United States to still use shock treatment as discipline on its residents.
ABA is a commonly used treatment for autism, which faces criticism from the autistic community because its goal, according to founder Dr. O. Ivaar Lovaas, is to make autistic children “indistinguishable from their peers.” The focus is to assimilate children by getting rid of autistic behaviors such as hand flapping rather than focusing on social skills in a way that accommodates for the individual, or sensory integration.
Ari Ne’eman is a leading autistic self-advocate and president and co-founder of the Autistic Self Advocacy Network (ASAN), a nonprofit founded and run by autistic people, which seeks to advance the principles of the disability rights movement with regard to autism.
In an article by the Child Mind Institute, an independent, national nonprofit which helps children with mental health issues and learning disorders, Ne’eman said he objects to ABA.
“The emphasis on things like eye contact or sitting still or not stimming”—i.e. self-stimulation such as flapping hands—“is oriented around trying to create the trappings of the typical child without acknowledging the reality that different children have different needs,” he said in the article. “It can be actively harmful when we teach people from a very early age that the way they act, the way they move is fundamentally wrong.”
The objection is not against structured early intervention for autistic children altogether. Rather, it is because of ABA’s origins in a focus of assimilation, as well as how this focus on getting a child to act socially acceptable detracts from interventions which may actually help the child adapt and learn, rather than just present well.
ABA also has a history of not only encouraging what is socially perceived as correct behavior, but also of implementing punishments for typical autistic behavior or any perceived disobedience. The child is not only rewarded for acting neurotypical, they are penalized for being unable to conform. While current ABA therapy in general is not allowed to use electric shocks on children, other than the JRC, there are still links between ABA techniques and lasting trauma.
In a 2017 study published in the Advances in Autism journal, researchers found that of autistic children exposed to ABA therapy, nearly half met the diagnostic criteria for Post Traumatic Stress Disorder (PTSD), whereas in the control group 72% of children met none of the criteria.
In 2011, ASAN began Autism Acceptance Month, also in April, as a direct response to the negative rhetoric surrounding autism awareness and the organizations who benefit from it. Autism Awareness Month focuses on the needs and voices of autistic people rather than fundraising for a cure or condemning autism as a social burden.
According to ASAN, “Autism Acceptance Month promotes acceptance and celebration of autistic people as family members, friends, classmates, co-workers and community members making valuable contributions to our world. Autism is a natural variation of the human experience, and we can all create a world which values, includes and celebrates all kinds of minds.”
The goals of Autism Acceptance Month go along with a slogan used by ASAN and many other disability advocates: “Nothing about Us without Us.” This phrase, which has been part of the disability rights movement in America since the 1990s, focuses on the fact that no policy should be made or organization created without full and direct participation from the people who will be affected.
Part of Autism Acceptance month is the “Red Instead” campaign, which encourages autistic people and their allies to wear red instead of blue on April 2 in hopes to counter the messages spread by Autism Speaks and Light It Up Blue.
In addition to ASAN, resources and groups which promote autism acceptance include the Autistic Women and Nonbinary Network (AWNN) , the Loud Hands Project, and books such as Neurotribes, by Steve Silberman, and anything created by and for autistic people.