When it comes to sharing opinions about what is best for underserved communities, I begin by learning from those communities themselves. I read and listen to the voices of poor people, black people, immigrants, refugees, LGBTQ people and so on. This month, issues related to people who have Autism Spectrum Disorder are on my mind, so I knew I wanted to hear from autistic people.
Before I could begin understanding what issues face autistic people, I had to learn what autism actually is. The U.S. Department of Health and Human Services describes autism spectrum disorder (ASD) as “a group of developmental disorders characterized by impaired social interactions, problems with verbal and nonverbal communication, repetitive behaviors or severely limited activities and interests.”
According to the Centers for Disease Control and Prevention, “the learning, thinking and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.” In fact, many people on the autism spectrum lead lives that seem quite typical to the outside observer.
As I sought information about the issues facing autistic people, I found that many of the one in 68 people who are on the spectrum are quite capable of stating what their needs are if people are willing to listen. The Autistic Self-Advocacy Network (ASAN), a group run by and for autistic people, has been empowering autistic people since the 1990s.
The strength of organizations whose staff and board members are actually on the spectrum lies in the attitude that the needs of ASD people will be met when the world accepts them as they are. That is why, instead of celebrating Autism Awareness Month — as promoted by other larger and well-funded organizations such as Autism Speaks — ASAN celebrates Autism Acceptance Month. According to the ASAN website, “Autism Acceptance Month is about treating autistic people with respect, listening to what we have to say about ourselves, and making us welcome in the world.”
This perspective is in stark contrast to the larger organizations behind Autism Awareness Month. Of course, many — if not most — people involved in Autism Awareness Month surely mean well. But digging into the websites of the largest autism organizations, the themes of “prevention,” “treatment” and even “recovering from autism” appear throughout. They treat autism as if it were a disease that needs to be eradicated, rather than a set of developmental conditions.
For years, autistic people and their allies have been putting pressure on organizations with this kind of disease mentality. It was only this past fall that Autism Speaks removed the phrase “possible cure for autism” from their mission statement. At the same time, Autism Speaks added two board members who are self-identified as on the spectrum, which means autistic voices are more directly represented in the oversight of the organization. The best advocates for autistic people are autistic people.
That said, there are many people on the autism spectrum who are not able to advocate for themselves. About 40 percent of autistic people are non-verbal, and, while this does not mean they are not able to communicate, it does mean effective communication can be a serious challenge. Intellectual disabilities, communication disorders, epilepsy or other genetic disorders are present in approximately 70 percent of people with ASD. And, of course, when autistic people are children, they all must depend on their parents to serve as their advocates.
Because not all autistic people can advocate for themselves directly, organizations that bring parents, caregivers and autistic people together for support and action may have the most impact. Notably, the Autism Society of Maine — an organization that began as a parent support group — makes it clear on the first page of its website that the organization includes the leadership of people with autism. In their case, it seems clear they are advocating for changes in our society and institutions to better accommodate the needs of people who are on the spectrum rather than trying to prevent or “cure” how they exist in the world.
Heather Denkmire is a writer and artist who lives in Portland with her two young daughters. After a few challenging years, she is growing her small business, where her team helps nonprofit organizations win grants. She can be reached at firstname.lastname@example.org. Her columns appear monthly.