Autism Acceptance vs. Autism Awareness
By Caroline Garrett, Service Navigator
This April marks the 49th annual Autism Awareness Month, a national initiative begun in 1972 by the Autism Society of America to increase public knowledge of what was then a little-understood disorder diagnosed in just 1 in 5,000 of the population. In 2007, the United Nations General Assembly declared April 2 World Autism Awareness Day to kick off Autism Awareness Month each year.
Since the 1970s, autism diagnoses have risen to approximately 1 out of every 54 children (about 2% of the population), and Autism Spectrum Disorder (ASD) is now understood to be a relatively common neurodevelopmental disability with highly variable and diverse traits. By 2021, thanks in part to the efforts of several nonprofits, schools, parent groups, online communities and more, most people have at least heard of autism. However, decades after the inception of the first Autism Awareness Month, the leading voices of autism are, for the most part, not autistic.
Autism Speaks is a prominent organization that has popularized Autism Awareness Month and established fundraising walks for autism research throughout April. Currently, Autism Speaks is one of the leading voices on autism; a Google search for the word “autism” shows Autism Speaks as the third result (after the biomedical sites National Institutes of Health and Mayo Clinic). In 2010, Autism Speaks began the Light it Up Blue campaign, encouraging people to wear blue on April 2 and partnering with landmarks and buildings to turn on blue lights outside to recognize autism. However, these annual initiatives have mostly focused on the rising numbers of autism diagnoses each year while having limited representation of autistic people.
On autism-related social media posts during April, people may see the hashtag “#AutismAcceptanceMonth” alongside “#AutismAwarenessMonth”. Is there a difference between the two, and if so, what is the distinction? In 2011, an autistic self-advocate named Paula C. Durbin-Westby founded “Autism Acceptance Month” in an effort to push back against the discrimination and misunderstanding that autistic people faced, particularly leading up to and during Autism Awareness Month. In an interview with the assistive technology software company AssistiveWare, Durbin-Westby said that some awareness campaigns compared autism to cancer and that the general attitude around the month framed autism as something that individuals and their families suffer from. She stated, “I did not want April to be always conducted on non-autistic people’s terms. I wanted to preempt anything negative & create something strongly positive for us.”
The autistic community needs people to be more than just aware of autism. Awareness is limited; it allows people to donate a few dollars, participate in a walk, wear a blue T-shirt and feel like they have done enough. It excuses people from not looking past the top results of an internet search that describe the clinical aspects of autism without representing the unique strengths and insights of the autistic community. It perpetuates the idea that autism is a condition to be fixed, rather than a relatively common form of human variety known as neurodiversity. Beyond awareness, autistic people deserve acceptance and even celebration, with the recognition that our differences are strengths as well as challenges and with the right supports, we can and will be successful.
In October of 2011, after Paula C. Durbin-Westby’s efforts, Samantha Bodwell, an autistic board member of the Autism Society of Northern Virginia, encouraged the organization to also make the switch to Autism Acceptance Month for the April 2012 campaign. Throughout the past decade, the idea of acceptance has grown. The Autistic Self-Advocacy Network started the Autism Acceptance website, many major organizations began celebrating “Autism Awareness and Acceptance Month”, and now the Autism Society of America has shifted the focus entirely to acceptance and is calling on other organizations to do the same. The theme for the Autism Society of America’s 2021 Autism Acceptance Month is #CelebrateDifferences, which “focuses on providing information and resources for communities to be more aware of autism, promote acceptance, and be more inclusive in everyday life.”
In addition to supporting Autism Acceptance campaigns such as the Autism Society of America’s #CelebrateDifferences, autistic self-advocates and allies can elevate autistic voices throughout April. Great autistic-led organizations to start with include the Autistic Self-Advocacy Network and Autistic Women and Nonbinary Network, and people can follow the hashtag #ActuallyAutistic on social media accounts to learn from autistic individuals themselves.