by Cara Boim and Hannah Ridings
This presentation discusses the shift in definition of autism to a biologically rooted disorder and an “epidemic” through the lens of autistic activism, hypothesizing causes for and pointing out issues inherent in this discourse. The role of Autism Speaks in contributing to a pathologizing narrative is discussed, using the example of the 2009 “I Am Autism” video. Social versus medical models of disability are compared, and the work of the Autistic Self Advocacy Network (ASAN) in response to the 2007 “Ransom Notes” campaign is discussed as an example of autistic activism.
Perceptions of Autism over Time: Shift to a Genetic Disorder
- Today, our understanding of autism is that it has a biological basis. This is an understanding that has developed over the past several decades.
- Prior to this understanding, it was assumed that autism was caused by social factors. Namely, mothers who were too “cold” to their children were blamed for the development of childhood autism.
- Activists and other advocacy groups pushed for understanding a biological rather than a social basis for autism. This understanding began to take hold in the 1960’s; prior to this point the “refrigerator mother” hypothesis was uncontested.
Appeal of the Biological Model: A Two-Sided Coin
Portraying autism as a disorder with a biological root removes blame from mothers, and provides leverage for families to demands state and federal resources allocated for other medical conditions
Understanding autism as a “disease” with a biological root morphed rapidly (and predictably) into a quest for “autism genes”–with the explicit intention of editing these genes so that autism might be removed from the general population.
Why do activists seek to find biological bases for pathologized identities? What leverage does this bring? What risks?
The Autism “Epidemic”
With the shift to understanding autism as a biologically derived “illness,” we have seen the development of the concept of an autism “epidemic.” The most familiar example of this is vaccination hysteria, but the concept is widespread.
Why the hysteria?
(transcript available on YouTube)
- Autism Speaks has since its inception promoted the understanding of autistic people as burdens on society, people who would be better off unborn.
- Working within the medical model of disability, and alongside genetics, it seeks to find a “cure” for autism
The Puzzle Piece
Unsurprisingly, the logo of Autism Speaks is also problematic:
- Makes it seem like autism is a problem that needs solving
- People with ASD are incomplete
- Puzzles are primarily for children, which contributes to infantilization and the myth that autism is only for kids
However, as of February 2018, Autism Speaks said they have no intention of changing the logo.
Infantilization of People with Autism
- The attention of Autism Speaks, like that of mass media, tends to focus exclusively on children. In fact, the organization flat-out denies that autistic adults exist, even though research indicates there are just as many autistic adults as children. Suzanne Wright the founder of Autism speaks, was quoted in 2008 asking:
“Where are all the 50-year-old autistic people?”
Why do you think autistic individuals are always portrayed as children? What are potential consequences?
- Portraying only autistic children fits into the model Autism Speaks supports–that that dictates that autistic people shouldn’t be born, or if they’re born, they should be cured. It also leads to infantilization.
“Many of the most frightening (and erroneous) claims of a so-called autism epidemic have been made by charitable organizations to fuel their marketing campaigns. For instance, one charity’s depiction of autism as a national emergency akin to mass kidnapping (e.g., Mergenthaler, 2009) undoubtedly was purposed to exploit parents’ fears. Simply acknowledging that autistic adults exist in numbers equal to that of autistic children would jeopardize this rickety platform for fear-based fundraising.”
– “Infantilizing Autism” 2011
What does infantilization look like?
- Changing speech patterns
- Pet names (in a condescending manner)
- Speaking for them or not speaking directly to them when they are capable of speaking for themselves
- Making decisions for them or disregarding their opinion
- Being overly protective: withholding information or forbidding age-appropriate activity
Autism Speaks vs. ASAN
- Less than 4% of their budget goes to family services (as of 2016)
- While 32% of their budget is devoted to research, most of it is surrounding causation and prevention of ASD
- Only has 2 autistic people out of 26 people on its Board of Directors
- Fundraising strategies promote fear, stereotyping, and labeling people with ASD as “burdens on society”
- Nonprofit run by and for autistic people
- “Nothing about us, without us!”
- 74% of their budget is focused on advocacy, which includes:
- Promoting acceptance not “awareness”
- Joining forces with other groups to promote intersectionality and solidarity
- Compiling a resource library of tools for self-advocates
Autistic Self Advocacy Network and the 2007 “Ransom Notes” Campaign
Founded in 2006, ASAN came into the public light prominently in 2007, when its president, Ari Ne’eman, worked instrumentally to bring together disability rights activists in protest of the Ransom Notes public health/commercial campaign. ASAN is “an organization run by and for autistic people” and advocates for a social model of disability (ASAN).
Autistic Activism: Centering the Work of Autistic Persons, and Challenging the Pathology and Tragedy Narratives
“Autistic people are frequently described… as empty shells without souls, burdens on our families and society, contributing nothing, ballast that merely weighs everyone down…I am and have been exactly the sort of person who is meant when these awful concepts are used”
– Amanda Baggs, autistic activist and author
High vs. Low Functioning and the Autistic Spectrum
Pros of the spectrum metaphor for autism:
- Breaks down some binary understanding of autism/allows for fluidity
- Allows for group advocacy
Cons of the spectrum metaphor for autism:
- Reinforces a binary
- Creates a scale from “high” to “low” functioning
- Groups together autistic individuals with very different needs