Autism Awareness Month or Autism Acceptance Month? April is caught in a tug-of-war, and I am pulling for the latter. I am only one autistic person and cannot speak on behalf of the entire community, but I know I am not alone.
Autistic disability rights activist Paula C. Durbin-Westby held the first Autism Acceptance Day in 2011. It was a direct response to the negative portrayals of autism associated with campaigns about “autism awareness.”
The narrative that autism should be fixed is tired and mostly promoted by people outside of the autistic community.
In an interview with AssistiveWare, a software company that partners with the Augmentative and Alternative Communication (AAC) community, Durbin-Westby said, “Acceptance is: pro-neurodiversity, a focus on supports and services tailored to the needs of the Autistic individual, rejection of cure-oriented projects.”
This definition challenges the previous prevalent attitude toward autism, which equated autism to a disease. Until 2016, Autism Speaks — the largest autism advocacy and research organization in the U.S. — stated an interest in finding a “cure.”
The organization is known for perpetuating the negativity Durbin-Westby fought against. In 2009, it published the short film “I Am Autism” on its YouTube channel. The video was framed like a horror movie narrated by the disembodied concept of autism. Lines like “If you are happily married, I will make sure your marriage fails” and “I will plot to rob you of your children” were intended to scare the parents of autistic children.
Autism Speaks has removed and apologized for the video, but continues to frame autism as negative and promote treatments that do more harm than good. Applied Behavioral Analysis (ABA) uses a combination of praise and punishment to reduce the expression of neurodivergent traits such as avoiding eye contact. In 2019 U.S.-based research found “[Autistic] Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA.”
I champion acceptance over awareness because no one should be traumatized into suppressing harmless behaviors. The narrative that autism should be fixed is tired and mostly promoted by people outside of the autistic community.
Out of the 28 people on Autism Speaks’ Board of Directors, only one is autistic. 23 are current or former executives of corporations such as PayPal and American Express. Based on the organization’s 990 Non-Profit Tax Exemption Form from 2018, only 1% of its budget goes towards funding services intended to improve autistic people’s quality of life, while 20% goes to fundraising. With some executives making over $600,000 annually, what the board really cares about is obvious.
Autism Speaks is designed to counter autism acceptance. The organization profits from speaking over autistic people and scaring parents into believing that ABA is the only way their autistic children can excel.
We need more groups like the Autistic Self Advocacy Network (ASAN), which is “run by and for autistic people.” ASAN’s mission is to protect autistic people’s autonomy by ensuring they are involved in policy-making.
One of my favorite lines from ASAN’s website is as follows, “We celebrate and promote autistic community and culture.”
That is what acceptance means to me. Not just tolerating autistic people or giving us the bare minimum resources to survive, but embracing us and our self-expression as another part of what makes our neurodiverse world so rich and complex.
In closing, I will remind you that autism is a spectrum. Some of us require assistive care. Some of us are capable of living independently. Some of us may avoid eye contact, be nonspeaking, stim in public or express a combination of the myriad of other traits associated with autism. All of us deserve respect.
dbongiov@ramapo.edu
Featured photo courtesy of Tara Winstead, Pexels
