“I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too” (Autistic Self Advocacy Network). These eerie words opened the 2009 video “I am Autism,” which quickly gained internet views and caused a world of problems for the autistic community. This video, set to sinister music, shows hazy images of children playing alone as a narrator’s voice booms, addressing a parental audience directly. The narrator, or “autism,” tells the audience, “I will bankrupt you for my own self-gain,” and “I don’t sleep, so I make sure you don’t either.” After rattling off countless other exaggerated threats, “Autism” states, “I have no cure” (Autistic Self Advocacy Network). This statement, in tandem with the rest of the video, likens Autism to a tragedy and death sentence for autistic individuals and their families. Rather than approaching Autism with a perspective of appreciation and tolerance, it approaches it with disgust and retaliation.
While the content of “I am Autism” reflects a discriminatory and hateful view of Autism Spectrum Disorder, it was produced by Autism Speaks, the nation’s most prominent Autism advocacy organization. Ironically, Autism Speaks, an organization widely supported by parents of Autistic children, has used this kind of rhetoric to inspire irrational fear of Autism Spectrum Disorder. This disturbing irony can ultimately be attributed to the cure-driven paradigm that advocacy groups, particularly Autism Speaks, employs. In short, this cure paradigm uses medicalized discourse to portray as a tragic and abnormal disease (Saunders 5). An example of
this medicalized discourse is Baron Cohen’s Theory of Mind, which generalizes that people with Autism are cognitively inept (Saunders 4). As a society, our institutionalized drive to find an Autism cure has proven counterproductive to true Autism advocacy. As demonstrated by “I am Autism,” American mainstream culture has blindly supported rhetoric that stigmatizes and hinders the social equity of autistic individuals. The neurodiversity movement, a lesser-known advocacy paradigm, could counteract the stigma that cure-driven advocacy perpetuates. In brief, neurodiversity is the concept that neurological differences in the human genome, such as Autism and ADHD, are simply variations in genome and behavior rather than tragic diseases (“What is Neurodiversity?”). To avoid further stigmatizing individuals with Autism, our society should work to diminish the cure-driven approach to Autism advocacy, both institutionally and culturally. To do so, we must discuss Autism through a neurodiversity lens.
Analyzing the stigmatizing rhetoric of cure-driven advocacy, such as “I am Autism,”
shows the need for neurodiversity based advocacy. Unfortunately, “I am Autism” is only one of many counterproductive efforts to advocate for individuals with autism. The first-person language utilized in “I am Autism” closely resembles that of New York University’s 2007
“Ransom Notes” campaign. One of these notes begins with “We have your son,” portraying
Autism as a merciless kidnapper (Donvan et al. 513). A variety of these notes plastered New York City kiosks and billboards (Donvan et al. 514). Widely known campaigns like these, though unquestioned by many, have sparked controversy among scholars, parents of autistic children, and autistic adults. The unsettling rhetoric “I am Autism” and “Ransom Notes” share spawns from a lack of understanding or awareness of neurodiversity. These campaigns villainize and sensationalize the neurological differences characteristic of Autism, which contradicts the destigmatizing viewpoint of neurodiversity. Portia Iversen, one of the parent founders of Cure Autism Now, compared Autism to the “Village of the Damned,” going on to say, “It’s as if someone has stolen into your house..and left your child’s bewildered body behind” (Donvon et al. 516). While these institutions and their campaigns create a macabre, alienating image of Autism, neurodiversity framework reflects the complexities and diverse perspectives of individuals with Autism. It regards people with Autism as intelligent human beings rather than as elements of an epidemic.
Although stigma is often viewed as an abstract and immeasurable construct, the significant number of filicides of autistic children proves the severity of this stigma in society. In 2007, Alison Singer, former board member of Autism Speaks and founder of the Autism Science Foundation, admitted on camera that she often considered throwing her autistic daughter and herself off a bridge (Donvan et al. 519). This footage was included in the documentary Autism Every Day, sponsored by none other than Autism Speaks (Singer). Shortly after this footage was released, a mother attempted to murder her autistic daughter. Ari Ne’eman, founder of the Autism Self Advocacy Network, rightly addressed the correlation between these two instances.
The 2014 report “Anti-Filicide Toolkit” later supported Ne’eman’s assertion, outlining that from
2009 to 2014, fifty people “with disabilities” were killed by their parents or caretakers (“ASAN
Anti-Filicide Toolkit”). The 2018 update of this report detailed that, from 2013 to 2018, the rate of filicide increased to 550 (“ASAN Anti-Filicide Toolkit”). Evidently, harping on sentiments of hopelessness for autistic children gives parents the impression that their suffering should end (Coorg et al. 745). Advocacy that centers around an unresolved Autism cure generates similar feelings of hopelessness. Because neurodiversity upholds that Autism needs no cure, responding to these sentiments in terms of neurodiversity could reduce the hysteria and loss of rationale among parents.
Although fear and filicide of autistic children still occurs at alarming rates, the cure-driven paradigm has also shown success in producing the opposite effect. For one thing, it is outlandish to assume all parents of autistic children contemplate filicide or feel that their child’s Autism has alienated them. On the contrary, many parents find moral support and community within cure-driven organizations like Autism Speaks. Although Autism Speaks is flawed in its portrayal of Autism, its cure-driven agenda has succeeded in bringing autistic individuals and their families together. Although campaigns like “I am Autism” have portrayed Autism as socially alienating, other cure-based initiatives, such as community meetings, town halls, and the annual Autism Speaks Walk have operated using more optimistic rhetoric (“Community Outreach”). These resources have helped to ease potential distress surrounding an Autism diagnosis, as well as maintain a constant discussion of Autism. The research and political lobbying that comes from this likely provides a sense of comfort those who are cure-driven as well (Donvan et al. 470). Although Autism Speaks has created ignorance and misunderstanding through campaigns like “I am Autism,” the organization has also educated a broad audience about Autism. Ultimately, it sets an example for the scope that any Autism advocacy, cure or neurodiversity driven, must reach.
To further alleviate the confusion, distress, and fear that many families of autistic individuals experience, advocates must give an effort to showcase neurodiversity, or an autistic person’s subtle differences, in action. This is necessary to improving the public’s overall perception of Autism. To accomplish this, it is vital to advocate for more autistic leaders. Under the cure-driven paradigm, autistic leadership has been practically non-existent. John Elder Robison, the only autistic individual to ever serve on the board of Autism Speaks, resigned expressly because the other board members fully ignored his warnings about their destructive rhetoric, and he felt his peers did not respect his perspective (Robison). Clearly, mainstream audiences must not only include, but validate autistic voices like Robison’s. When people disregard the unique perspectives and experiences of someone with Autism, they rob them not only of their voice, but of their keen ability to inspire and reassure others. Showing the communicative capability and success of autistic leaders would help to alleviate families’ feelings of distress and fear towards Autism. Seeing autistic leaders’ success could bring hope to families who have not fully grasped their children’s unique needs and behaviors. This improved representation of neurodiversity and autistic voices would foster a more accurate and positive understanding of Autism.
In order to silence the broader hysteria surrounding autism, neurodiversity-driven advocates must be willing to check the power of cure-driven institutions and campaigns. For example, each April, the mainstream audience is regularly exposed to Autism Speaks’ “Light it up Blue,” which permeates through social and journalistic media. Politicians wear the campaign’s blue puzzle piece logo as a badge of inclusion and honor, while ordinary Facebook users change their profile frames and share automated posts to collect donations for Autism Speaks. While these mainstream audiences have noble intentions in supporting Autism Speaks, the vast majority remain ignorant to the social harm and digression its initiatives have caused for the people it claims to support. For example, audiences are largely ignorant to the eugenic nature of the organization’s medical research, which presumes that the world would be better off without autistic individuals (“Autism Speaks: Torturing Autistics for Profit”). For the sake of lifting this stigma, parents, autistic individuals, and allies alike must publicly critique and question these cure-driven initiatives. The neurodiversity paradigm, which rests on legitimate sociological and scientific arguments, provides an intelligent and reputable alternative to cure-driven advocacy.
To effectively critique the cure-driven advocacy paradigm, allies and advocates must increase the caliber of neurodiversity-based organizations and platforms. The neurodiversity movement, which, though prevalent in academic discourse and within niche communities,
seldom reaches the generic audience that “Light it Up Blue” and “I am Autism” have reached.
To have a more widespread impact, neurodiversity awareness campaigns and conversations must acquire a level of popularity akin to that of these campaigns. To achieve this, neurodiversity awareness must be marketed as a collaborative, organizational initiative rather than as independent advocacy. The most successful instance of this thus far is an Autism Self Advocacy
Network letter entitled “2014 Joint Letter to the Sponsors of Autism Speaks,” which respectfully points out the offensive rhetoric, lack of autistic leadership, and poor scientific and fiscal responsibility of Autism Speaks. This letter acts as a clear call to action against cure-driven
advocacy and led to the removal of “I am Autism” from the internet (Saunders 2). Overall, this letter shows that by giving the neurodiversity paradigm a marketable name and premise, new and existing advocacy groups can broadly acknowledge society’s stigmatization of Autism. Once the neurodiversity paradigm has been reiterated and legitimized, society will more easily recognize the need to destigmatize Autism.
While growing up with Autism or raising a child with Autism can pose significant challenges, Autism should never be equated to a terminal epidemic or a ruthless monster.
Because Autism diagnoses have become nearly fourteen times as common since the 1970s, it is more crucial than ever for society to understand the true nature of Autism (Doheny). However challenging it may be to negotiate one’s neurological differences, those differences serve as a valid facet of one’s social identity. Just like race, sexuality, or gender, neurological differences should be celebrated and understood rather than stigmatized. While the complete de-stigmatization of Autism Spectrum Disorder will be a slow and challenging process,
discussing the condition in terms of neurodiversity will make realistic strides towards this goal.
By treating the autistic community with equity and respect, our society can work toward creating a more inclusive space for people across abilities and neurological differences.
Works Cited
“Autism Speaks: Torturing Autistics for Profit.” Ownshrink.com, Vaughter Wellness, ownshrink.com/neurodiversity/autism-speaks-genocide-for-personal-gain/
Autistic Self Advocacy Network. “Horrific Autism Speaks ‘I Am Autism’ Ad Transcript.” Autistic Self AdvocacyNetwork, autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/.
“ASAN Anti-Filicide Toolkit.” Autistic Advocacy, Autism Self Advocacy Network, 2014, https://scdd.ca.gov/wp-content/uploads/sites/33/2016/10/Anti-Filicide-Toolkit.pdf
“ASAN Anti-Filicide Toolkit.” Autistic Advocacy, Autism Self Advocacy Network, 2018, Grimaldi 8 autisticadvocacy.org/wp-content/uploads/2015/01/ASAN-Anti-Filicide-Toolkit-Complete.pdf.
“Community Outreach.” Autism Speaks, Autism Speaks, www.autismspeaks.org/community-outreach.
Coorg, Rohini, et al. “Filicide-Suicide Involving Children With Disabilities.”
Journal of Child Neurology, vol. 28, no. 6, 2013, pp. 745–751.
Doheny, Kathleen. “Autism Cases on the Rise; Reason for Increase a Mystery.” Web MD, www.webmd.com/brain/autism/searching-for-answers/autism-rise.
Donvan, John, et al. In a Different Key: the Story of Autism. Broadway Books, 2017.
Robison, John Elder. “I Resign My Roles at Autism Speaks.” Look Me in the Eye, Blogger, 4 Feb. 2018, jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html.
Saunders, Pamela. “Neurodivergent Rhetorics: Examining Competing Discourses of Autism Advocacy in the Public Sphere.” Journal of Literary &Amp; Cultural Disability Studies, vol. 12, no. 1, 2018, pp. 1–17.
Singer, Alison. “Speaking Out About ‘Autism Every Day.’” ASF Blog, Autism Science Foundation, 9 Sept. 2009, autismsciencefoundation.wordpress.com/2009/09/09/speaking-out-about-autism-every-day/.
“What Is Neurodiversity?” Autism Awareness, 12 Apr. 2016, autismawarenesscentre.com/un-adopts-new-goals-disabilities/
You say,
“discussing the condition in terms of neurodiversity will make realistic strides towards this goal.
By treating the autistic community with equity and respect, our society can work toward creating a more inclusive space for people across abilities and neurological differences”
I agree! When will this be a reality in the public education system? Specifically, Texas! TEA and Public School Systems systemically place and stigmatize children with Autism by systemically separating them from their peers, siblings, and home campuses. It is a systemic epidemic in the stigma of placing able learners in the infamous labeled ” L.I.F.E. Skills” programs. Slower paced learners don’t equate to incapable learns.