This April marks the 49th annual Autism Awareness Month, a national initiative begun in 1970 by the Autism Society 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 59 children, and Autism Spectrum Disorder (ASD) is now understood to be a relatively common neurodevelopmental disability with highly variable and diverse traits. In 2019, 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, people with autism remain misunderstood by the general population.
This is in part due to the leading voices in the Autism Awareness Month initiative; the nonprofit Autism Speaks is at the forefront of the autism conversation. An internet search of the word “autism” yields Autism Speaks’ website as the first result, and the Light It Up Blue initiative recognized worldwide each April 2 is strongly associated with the organization. Throughout the month of April, when businesses donate to a nonprofit in the name of autism awareness, the money often goes to Autism Speaks.
Many may not see this as a problem, and may even consider it a good thing—after all, why wouldn’t we want to fund research into a disability that affects nearly 2% of the population? The issue lies in the type of research that Autism Speaks promotes—AS views autism as a curable disorder and, in the past, has painted autism as a villain that “kidnaps” an otherwise “normal” child from their parents, as evidenced in a former ad entitled "I Am Autism." By removing the autism from the child, a healthy neurotypical child will be left in its place. The puzzle piece in Autism Speaks’ logo symbolizes the “missing piece” in people with autism that would otherwise make them nonautistic. This stance on prevention and a cure borders on eugenics and completely ignores what we do know about autism’s cause— that it is a combination of genetic and environmental factors—and invalidates the reality that autism shapes the way people think, process and perceive the world. In fact, many people with autism see it as an inseparable part of their identity and thus choose to refer to themselves as autistic.
Autism Speaks also perpetuates the long-held misconception that autism is predominantly a male condition; the blue in their logo is intended to highlight the (incorrect) gender disparity that boys have autism four times more than girls. As someone who was assigned female at birth, my autism was mislabeled as shyness and social anxiety. I was 17 before I realized I might be autistic and 20 before I received a formal diagnosis. When I tell people I’m autistic, some seem surprised. Others say it makes sense.
I need people to be more than just aware of my and others’ 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 first result of an internet search, from unknowingly supporting an organization that silences those for whom it claims to advocate. It perpetuates the idea that autism is a condition to be fixed, rather than a relatively common form of human variety known as neurodiversity. I need people to accept and even celebrate that my brain works different from theirs, to realize that my differences are both weaknesses and strengths and that with the right supports, autistic people can and will be successful.
Those who want to support autistic people and learn more can look into the Autistic Self-Advocacy Network, the Autistic Women and Nonbinary Network and autistic members of their own communities.
By Caroline Garrett, A&E Editor