To mark the end of Autism Acceptance Month, let’s reflect on a brief history of the important change in language from “awareness” to “acceptance.”
April was once widely known as Autism Awareness Month, especially by those outside of the autistic community. This language of “awareness” began to be used over 50 years ago in the United States as a way to increase knowledge regarding the challenges and difficulties related to being autistic or an autistic person’s family member.
But in 2011, Paula C. Durbin-Westby, an autistic disability rights activist, began calling for the use of “acceptance” in place of “awareness.”
Before that, leading up to each Autism Awareness Month, “we [autistics] were just waiting for April to start, to find out what new twist on ‘devastating disorder’ we would have to survive this year, and then to get through the month and breathe a sigh of relief on May 1st,” says Durbin-Westby, in an interview for AssistiveWare.
Autism awareness campaigns portrayed autistic people as suffering and as tremendous burdens to their families and to society as a whole. For example, a 2009 Autism Speaks campaign included a video entitled I Am Autism, where a menacing voiceover states:
“I am autism. … I know where you live. … I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. … I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain. … I am autism. I have no interest in right or wrong. … I will fight to take away your hope. I will plot to rob you of your children and your dreams. … Autism, if you are not scared, you should be.”
At the height of this era, characterized by fear-mongering and inaccurate portrayals of autism, Durbin-Westby decided she’d had enough. “I was done waiting to see what ‘the other side’ would come up with and did not want to be forced to take a reactionary stance every year. I did not want April to be always conducted on non-autistic people’s terms. I wanted to pre-empt anything negative and create something strongly positive for us,” she says.
Autism Acceptance Month was officially born. Since then, many autistic individuals around the world have been helping to inspire lasting change in how we talk about autism and autistic people.
The symbols and words used in autism-related campaigns are important. Some symbols and words can call to mind a painful shared history. For example, the puzzle piece symbol still seen in many campaigns has been used to indicate that autistic individuals are broken, incomplete, and in need of fixing. The infinity symbol, a symbol representing human neurodiversity, is far preferred.
Why is this language shift so important?
Awareness days and months are usually used to spread knowledge and public health information about illnesses and diseases. In line with this, Autism Awareness Month is associated with the deficit or medical model of autism. This medical model focuses on autism-related symptoms, risks, problems, challenges, and weaknesses, often in an amplified or exaggerated way.
When viewed through this deficit-heavy lens, autistic individuals are construed as less-than or as disordered individuals in need of a cure — in sharp contrast to their non-autistic peers. From the newer social model of autism, however, autistic traits are seen as mere neurological differences that are neither better nor worse than non-autistic traits.
The message of acceptance is directly linked to the rise of understanding autism through this social lens. Autism is a neurotype signifying normal diversity in human brains. Autism is not something to be feared, but should be embraced, even celebrated.
“Acceptance is pro-neurodiversity, a focus on supports and services tailored to the needs of the autistic individual, [and a] rejection of cure-oriented projects.” —Paula C. Durbin-Westby
Looking ahead, what is beyond acceptance? Some point to a time of full inclusion of autistic and other neurodivergent individuals, where days or months promoting acceptance will no longer be needed.
