With its menacing music and ominous narration, Autism Speaks released “I am Autism”, a 2009 commercial that personifies autism as a sinister and burdensome force with lines such as, “I am autism. I have no interest in right or wrong. I take pleasure in your loneliness. I will fight to take away your hope.” After ‘autism’ concludes its first-person account of how it seeks to tarnish the lives of those around it, family members of autistic children make a pronouncement to autism, saying, “Autism, if you are not scared, you should be. When you came for my child, you forgot: you came for me.”
This PSA has been derided by autistic advocates since its release, with the Autism Self Advocacy Network describing the ad as “horrific.” While Autism Speaks removed “I am Autism” from their platform and apologized “for the video and the harm it may have caused”, the distasteful 2009 commercial is only one of the many insidious actions taken by the self-proclaimed autism awareness non-profit organization. “I am Autism” serves as an emblematic example of the non-profit’s propensity to center the voices of parents and caregivers while ignoring the concerns of the autistic community itself.
According to their website, Autism Speaks was founded in 2005 by Bob Wright, a former NBC executive, and his wife, Suzanne, because they were“inspired” by their grandson’s autism diagnosis. From that point onwards, their mission was to “create awareness and to get scientific and medical research on autism and to also provide treatments,” as Wright stated in a 2014 MetroFocus interview. Today, Autism Speaks remains the largest American autistic research group, and it has made strides towards correcting its earlier outward hostility of autism through transforming their mission statement to promote autism acceptance and support instead of seeking a “possible cure” for the condition.
However, the same criticisms of the group’s internal functioning largely remain valid: the board of directors and leadership team contains only one autistic person and is largely composed of members from companies like Goldman Sachs and Mastercard. Autism Speaks continues to refuse to center the input of the autistic community, as indicated by their website still listing Asperger’s Syndrome as a key part of ASD (autism spectrum disorder), despite the fact that the condition is no longer diagnosed in the USA and Hans Aspergers, the physician after whom the condition was named, was infamous for his collaboration with the Nazi Party. Furthermore, the organization’s website is still largely aimed at providing information about autism to parents and caregivers rather than resources for autistic people themselves.
Perhaps most visibly, Autism Speaks has popularized the use of the puzzle piece as a symbol of autism and continues its use despite a growing backlash towards the symbol. After shifting their blue puzzle piece logo to include a gradient of complementary colors in 2020, Autism Speaks professed that their logo is a representation of autism’s many complexities and the diverse variety of experiences with autism. However, many members of the autistic community argue that the puzzle piece symbol implies that there is something inherently childish and incomplete about autistic people. Originally, the puzzle piece was created by a board member of the National Autistic Society in 1963. It included a puzzle piece with a weeping child in it, suggesting that autistic people, specifically children, are ‘suffering’ from a ‘puzzling’ condition. In recent years, a rainbow infinity sign has grown in popularity as a representation for the wide spectrum of presentation and traits of autistic people and neurodiversity more generally. Unfortunately, even the positive intentions behind the logo connote deeply unsettling goals that pervade the non-profit. The bright colors are meant to symbolize hope for a cure or treatments to minimize autistic behaviors and traits, The continued use of this logo symbolizes a continued deliberate ignorance of autistic voices and feelings. Their logo truly represents the group’s outlook on autistic people: as a puzzling and infantilized population unable to speak for themselves.
The group’s corporatist roots and its years of villainizing autism and, by proxy, autistic people, speak for themselves. The group isn’t focused on making the world more accessible or producing a place in which autistic people are allowed to speak; it’s simply focused on aiding caregivers in reinforcing conformity onto their autistic loved ones. Numerous articles and groups have criticized Autism Speaks’ conduct in public discourse and as a non-profit. Medium contributor and autism advocate Toni Morales recently wrote an insightful article on the harm that Autism Speaks has caused. She notes that most of the apparent strides made by Autism Speaks have actually maintained and continued the harm they’ve caused since the group’s beginning.
Morales points out Autism Speaks’ continued support of Applied Behavioral Analysis (ABA) as a documented “treatment” for autistic people. Based on the principles of operant conditioning,ABA has been fiercely criticized for its underlying objective to “train” autistic people in extinguishing their autistic behaviors. However, ABA has resulted in poor mental health outcomes for those subjected to the “therapy”, with one 2018 study by Henny Kupfersteing suggesting that 86 percent of patients that have undergone ABA have experienced increased PTSD symptoms. Most importantly, Morales highlights the dread that she, as an autistic person, feels for another Autism Awareness month centered around the powerful body’s poorly designed symbols and ideas. Instead of a month of celebration, she and many others are forced to endure a month of patronizing and inaccurate information.
As a well-funded research body, Autism Speaks’ current legislative actions and scientific exploration demands further explanation and exploration. The organization often reiterates that one of their main objectives is to “increase knowledge through research.”However, this year, they’ve spent over $44 million on advertising alone and just over $20 million on research. Almost half of their massive $95 million budget isn’t directed towards actual research into autism, and less than 14 percent of their entire budget contributes to “science” according to their annual budget report. Despite being the biggest autism research body in the US, they don’t seem focused primarily on research; their main focus remains on creating mean-spirited advertisements like “I am Autism.”
Nonetheless, it is still worth asking how Autism Speaks’ research and advocacy has changed the autism landscape. The most recent legislative action that the group has supported was the Autism CARES Act in 2019, which expanded the previous Combating Autism Act of 2006. According to Autism Speaks, the act has allocated $3.1 billion of government funds towards autism to the National Institutes for Health, the Center for Disease Control and Prevention, and the Heal Resources and Services Administration. The non-profit proudly announced that this money has led to:
- “A reliable diagnosis age of 18-24 months
- Established that timely interventions makes a lifetime of difference
- Identified co-morbidities
- Increased understanding of biological causes of autism
- Identified genes and possible medication targets
- Developed early career autism researchers”
Despite the length of this list, there is very little elaboration on each point. In addition, in some sense, the act merely represents another attempt at curing ASD without directly saying so. Moreover, the concept of a “reliable diagnosis age” contradicts a CDC study published in 2020 which highlighted a discrepancy between the number of adult autistic people and autistic children. They found that children, especially those assigned female at birth, are likely underdiagnosed and unrecognized as having autistic traits, so an increased subjection to diagnosis makes little difference if the current ASD diagnostic process is flawed. Additionally, the vague “timely interventions” that could potentially alter an autistic person’s life and the identification of “possible medication targets” also marks a continued pursuit of potentially altering autistic people towards neurotypical standards.
Other interactions with the government that the group mentions are detailed in a 2018 Autism Speaks blog titled “How the autism community guided the FDA.” A reference to autistic communities would usually signify the inclusion of autistic people. However, the community that “guided” the FDA in developing drugs that supposedly reduce autistic behaviors was composed of two neurotypical parents. In a question and answer style interview, readers learn that, with the aid of Autism Speaks, the FDA can now “give clear guidance on designing clinical trials to achieve what matters most to patients” despite neither organization consulting autistic patients. What best highlights the negligibility of the medical investigations by Autism Speaks, which likely is worth millions of government dollars, is their descriptions of current medications that mitigate autistic behaviors. The parents state that they worry “‘about the long-term effects’” and effects that have had a detrimental impact on the autistic people who use them, but they also emphasize that finding “‘life-saving’” medication (as described by parents of autistic children) is still needed to “increase function” in autistic people.
With the group’s influence on various government agencies and policies as well as their continued ignorance towards the autistic community, Autism Speaks prioritizes the comfort of parents and caregivers over the opinions of autistic people themselves. Despite their past apologies and incremental changes, it is apparent that Autism Speaks still believes that “family is stronger than autism,” as mentioned in “I Am Autism”, but only because they are doing their best to make it so. They are bringing their vision of mitigation and ignorance to the real lives of autistic people who must live with the consequences of their misdirected actions.
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