Nuerotypicals Speak
Each year, the Department of English awards the James Strickland Award to the top essays from ENGL 102 Critical Writing. These pieces are selected first by writing instructors, narrowed down to 10 by a select committee of reviewers made up of department faculty, and then ultimately selected by professor emeritus James Strickland.
Below we are proud to present the winner of the 2022 James Strickland Award for Writing, Zach Sterza.
Dr. Strickland explains: “I enjoyed reading Zach Sterza’s essay, “Neurotypicals Speak,” because it was so professionally written, so carefully researched, and rhetorically so in control. I had some experiential understanding of autism, so I knew his essay was probably about autism spectrum disorder (ASD), since those in the community often make the point that those with autism are not neurotypical. I was also familiar with the Autism Speaks organization and its mission to promote awareness of ASD–hence the title. But then Zach spun me on my head, indicting the Autism Speaks organization with promoting the extremely negative stigmatization it purports to erase. Zach takes the reader through the charges step by step until the organization is seen as self-righteous and self-serving. And I could not help but read his conclusion as his summation for the jury, who will vote by what organizations merit future donations. Well done.”
Essay by Zach Sterza
Photo by Connor Beer
Whenever I was in elementary school, it was not uncommon to hear the word “autistic” thrown around as often as food was. I will admit, I was one to use that same insult because of its popularity within the elementary school dialect, but I lacked the knowledge behind the insult. So, what is the definition of autism and why is it so negative? According to the Center of Disease Control (CDC), autism spectrum disorder can be defined as “a developmental disability that can cause significant social, communication, and behavioral challenges,” (“Basics About Autism Spectrum Disorder). The answer to the negative connotation regarding autism comes from the lack of understanding about this neurodivergent disorder and/or the possibility of preestablished stigmas concerning a person with this disorder. To combat this societal standpoint and lack of knowledge, the organization Autism Speaks aims to increase the global acceptance and awareness of this community; however, the autism community, in an online outcry in early 2021, claims that the organization does the complete opposite. As a member of the autism community, I was intrigued and found that Autism Speaks is an organization that focuses on how to help parents and others, instead of autistic people. In doing so, they reinforce stigmas and try to force a neurodivergent individual to be more neurotypical.
The leadership of Autism Speaks lacks one major thing, autism. Throughout the board of directors and other leadership positions, there are only two autistic individuals who inhabit such high-ranked positions (Rosenblatt). These individuals are Dr. Valerie Paradiz and Dr. Stephen Shore (“Meet Valerie P.”) (“Board of Directors”). Despite the presence of two autistic people holding leadership positions, this representation is overshadowed by the fact that they represent such a small fraction among some 27 board of directors (including Dr. Shore) and other leaders within the organization (“Board of Directors”). Along with miniscule representation, the introduction of these autistic leaders in Autism Speaks is relatively recent. Both Dr. Paradiz and Dr. Shore were appointed to leadership positions in 2015, which is ten years after Autism Speaks was founded (Rosenblatt). Autism is mostly represented indirectly from the large sum of board members who are parents of at least one autistic child and not from individuals who possess personal experience and knowledge that neurotypical people lack (“Board of Directors”).
In addition to the current lack of autistic representation within the leadership of Autism Speaks, the history of autistic leaders is also grim. In fact, there was only one autistic member, who had enough power to be heard by others within the board of directors or other leadership roles if needed. He was John Elder Robinson, a member on the science and treatment advisory board of Autism Speaks. However, Suzanne Wright—one of the original founders of the organization who has since passed away in 2016—posted a piece of commentary on Autism Speaks’ website saying, “This week is the week America will fully awake to the Autism Crisis,” (Diament, “Noted Self-Advocate Cuts Ties with Autism Speaks”) (Pitney). The reference of autism as a “crisis” led Robinson to post this as a response on his blog: “For the past four years I have worked very hard to defend Autism Speaks after a series of public relations missteps; beginning with the I Am Autism video [This video will be talked about later]. The most recent “Autism Speaks Point of View” http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action [This article has been deleted from Autism Speaks’ website] shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization.” Because Robinson felt as if his efforts were insignificant, he resigned his position at Autism Speaks in 2013. This meant the only self-representation of autism within the organization was gone, leaving the organization in control of neurotypicals until Dr. Paradiz and Dr. Shore’s appointment in 2015. Despite these few autistic individuals, Autism Speaks was, and is, an organization run by neurotypicals trying to solve the “problem” that is neurodivergence and neuroatypicality. To put it another way, it is as if white people were leading the Black Lives Matter movement, which would counteract the entire argument. These people think they understand how to solve the issue about society’s lack of acceptance and understanding of the autism community, but they are looking at the macroscopic issue through the microscope of their own neurotypical perspective.
As a nonprofit organization, Autism Speaks requires more money than what is received through government funding. So, the organization relies heavily on donations from the public and partnerships with other organizations and/or businesses. To persuade these people and others to donate, Autism Speaks implements scare tactics. These scare tactics come in the form of public statements, posters, and videos. Two such videos, I am Autism and Autism Everyday (more of a short film than video), are the most popular examples of these scare tactics in practice. Released in 2009, the I am Autism video portrayed autism as a villainous disease. For half of the video, there is a voice (autism) talking in a maniacal tone explaining how autism will destroy the autistic individual and their family. The other half of the video shows a more positive outlook, but the negative stigmatization of autism came before any positivity. In addition to villainizing autism, the video is aimed towards parents. There is no voice of an actual autistic individual; it is all parents and how they will help their child. In the other video, Autism Everyday, the video follows the lives of several mothers of at least one autistic child. The mothers explain all the hardships that come with raising an autistic child. Yes, there are true hardships faced with raising an autistic child, or any child for that matter, but this short film explains how autism ruined the mothers’ lives. When one mother was talking about taking care of her daughter, she said this: “…But I remember that was a very scary moment for me when I realized I had sat in the car for about fifteen minutes and actually contemplated putting Jodie [Autistic child’s name] in the car and driving off the George Washington bridge, and that would be preferable to putting her in one of these schools [a school specially designed for autistic children].” After that comment, the same mother explains that the only reason she did not go through with this horrendous act was because she has a neurotypical daughter at home. These are real videos/short films Autism Speaks promoted in order to scare people into donating to the organization as if the donor would be a superhero fighting against the villainous autism. Because of Autism Speaks’ global publicity, the messages within these videos spread and further increase the negative stigmatization of autism. This media teaches us to feel sorry for autistic individuals, this media teaches us to stay away from autistic individuals, and this media teaches us to throw money at Autism Speaks in order to keep the autistic individuals away.
Donations received by Autism Speaks are not being used in ways the organization is claiming to use them for. On the Autism Speaks’ website under the “For the Record” page, the organization claims, “Eighty-five cents of every dollar Autism Speaks spends funds research, advocacy, programs and services, exceeding Better Business Bureau guidelines each year.” This seemingly positive usage of donations is too good to be true. According to a flyer posted by the Autism Self Advocacy Network (ASAN), Autism Speaks’ 2018 budget report showed that only 1% of the budget was used towards family services, and 27% of the budget was used towards research (“Before You Donate to Autism Speaks, Consider the Facts”). This is a far different from the previously claimed 85% usage towards family services and research. In the same flyer, it goes on to say, “…its [Autism Speaks] rates of executive pay are the highest in the autism world: some salaries exceed $600,000 a year,” (“Before You Donate to Autism Speaks, Consider the Facts”). In the end, the scare tactics used to increase donations only benefit the leaders within the organization, awareness, and lobbying. The only thing these donations are directly doing for autism is increasing and spreading the negative stigmatization behind it.
The image most commonly associated with autism is the blue puzzle piece. This blue puzzle piece has been the logo for Autism Speaks since the organization was founded back in February 2005 (Crosman). The puzzle piece itself was created in 1963 by Gerald Gasson, who was a parent member of the executive committee within National Autistic Society in the United Kingdom (“Perspectives on a Puzzle Piece”) (Diament, “Autism Journal Abandons Puzzle Piece”). The purpose of this puzzle piece was to represent how “[their] children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’,” (“Perspectives on a Puzzle Piece”). Since the image’s creation, many autistic people do not agree with the image and/or simply reject it. The puzzle piece implies that “…autistic people are incomplete or are missing puzzle pieces…” with the solution to the puzzle being “’Until all the pieces fit,’ or ‘Until the puzzle is complete…”’ (Crosman). This image further separates autistic people from society because it represents how they do not fit in or are not allowed to fit in.
When questioned about the blue puzzle piece, Autism Speaks held its ground and did not show any future intentions of changing the shape of their logo. In a statement back in 2018, Autism Speaks had this to say: “The blue Autism Speaks puzzle piece has had a huge influence on raising awareness of autism around the world, which is why we believe it is still a worthy and effective logo. It represents the search for answers that will lead to greater understanding and acceptance of people on the autism spectrum, their diverse challenges, abilities, and strengths. (Diament, “Autism Journal Abandons Puzzle Piece”)”. The organization claims that the image represents continued research into autism, yet they overlook all the research proving the negativity and misinformation the image is based upon (Diament, “Autism Journal Abandons Puzzle Piece”). However, Autism Speaks did modify their logo back in 2020. Now, the logo is more colorful to “signif[y] the diversity of perspectives and experiences with autism spectrum disorder and signals our deepened commitment to inclusivity,” (“Introducing the New Autism Speaks!”). Despite the change to attempt to represent increased inclusivity, the shape of the puzzle piece remains the same along with the same implications behind the simple, yet damaging image.
To start over for the better, Autism Speaks decided to rebrand itself in 2016. The organization claims to have listened to supporters and critics in order to “…better serve the autism community…” (“For the Record”). In this rebranding period, Autism Speaks changed their mission statement to remove the word “cure”, and they used this period to correct supposed misinformation which has previously led to several controversies (“For the Record”). Concerning eugenics, aversion therapy, “bleach cures”, and vaccines causing autism, Autism Speaks opposes and does not agree with any of those topics (“For the Record”). The opposition to these listed topics may be true, but the removal of the word “cure” from their mission statement is still questionable. Yes, Autism Speaks’ mission statement does not directly have the word “cure” in it, but it may still be there indirectly. The organization has had a past in searching for an autism cure because the neurotypical leadership sees autism as a “biomedical condition” instead of “a way of life,” (Bagatell). Autism Speaks does not deny their controversial past searching for a cure, but they also do not apologize for it. The organization goes on to say, “Since Autism Speaks was founded in 2005, research funded by our organization and others has shown that there is no single ‘autism.’ Science also tells us there will be no single ‘cure,”’ (“For the Record”). In this statement, there is a lot of room for interpretation because the organization does not give a definite answer on whether there is or is not a cure for autism. A Swedish researcher, Sven Bölte, says, “ASD [Autism Spectrum Disorder] is generally not curable, although it is treatable to varying degree to prevent worse outcomes.” Even though Autism Speaks no longer has the word “cure” in its mission statement, they have added the word “intervention.” These interventions are a series of therapies and workshops that are suggested to be implemented early on in an autistic individual’s life, and the hope is to have these interventions be life long (Green). In short, the purpose of these interventions can be seen as an “autism cure” to make an autistic individual more neurotypical.
Another aspect of Autism Speaks’ rebranding is the claim of autism advocacy “with and for the autism community,” (“For the Record”). In that claim, Autism Speaks goes on to say, “Autistic people are directly involved in the work and mission of Autism Speaks everyday: as employees, board members, volunteers, and grant reviewers,” (“For the Record”). As previously mentioned about Dr. Paradiz and Dr. Shore, these are the only two autistic individuals within the leadership of the organization (“Meet Valerie P.”) (“Board of Directors”). Two individuals cannot speak for the whole of Autism Speaks, especially because Autism Speaks is a global organization, not something small or local.
To make autism more widely accepted in society, Autism Speaks attempts to make an autistic individual act more neurotypically. Consequently, this fuels further negative stigmatization of autism. Autism Speaks is an organization mostly run by parents of autistic children in order to help parents understand this disorder. This leadership lacks self-representation of autistic individuals, which leads to the spread of misinformation on a global scale. In addition to the lack of autistic leaders, the organization utilizes scare tactics to increase funding and donations from the public. The scare tactics cause the public to think of autism as an evil that needs to be solved instead of an issue of societal acceptance. The issue of societal acceptance can be seen through the organization’s logo, which is a multicolored puzzle piece. To the autism community, this puzzle piece is seen as if they do not fit into society and/or are missing puzzle pieces that would make them normal in society’s eyes. Even though there is research to suggest the claim made by the autism community, Autism Speaks holds their ground believing the puzzle piece is a positive global image for acceptance and understanding. In an attempt to change their public image, Autism Speaks decided to rebrand in 2016 without admitting to any past wrongdoings and without any real change. The next time you want to donate to an autism organization, consider these organizations instead of Autism Speaks: The Autistic Self Advocacy Network (ASAN), Association for Autistic Community, Autistics Against Curing Autism, Nonspeaking Community Consortium, Foundations for Divergent Minds Autistic Inclusive Meets (AIM), or research an organization before sending your donation.
Works Cited
“About Us.” Autism Speaks, https://www.autismspeaks.org/about-us. Accessed 29 Sept. 2021.
Bagatell, Nancy. “From Cure to Community: Transforming Notions of Autism.” Ethos, vol. 38, no. 1, Mar. 2010, pp. 33–55. DOI.org (Crossref), https://doi.org/10.1111/j.1548-1352.2009.01080.x.
“Basics About Autism Spectrum Disorder (ASD).” Centers for Disease Control and Prevention, 25 Mar. 2020, https://www.cdc.gov/ncbddd/autism/facts.html.
“Before You Donate to Autism Speaks, Consider the Facts.” Autistic Self Advocacy Network, 2020, https://autisticadvocacy.org/wp-content/uploads/2019/03/AutismSpeaksFlyer2020.pdf.
“Board of Directors.” Autism Speaks, https://www.autismspeaks.org/board-directors. Accessed 23 Nov. 2021.
Bölte, Sven. “Is Autism Curable?” Developmental Medicine & Child Neurology, vol. 56, no. 10, John Wiley & Sons, Ltd, Oct. 2014, pp. 927–31. onlinelibrary.wiley.com, https://doi.org/10.1111/dmcn.12495.
Crosman, Cassandra. “The Ableist History of the Puzzle Piece Symbol for Autism.” In the Loop About Neurodiversity, 20 Mar. 2019, https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece-symbol-for-autism/.
Cuarón, Alfonso. I Am Autism. Autism Speaks.
Diament, Michelle. “Autism Journal Abandons Puzzle Piece.” Disability Scoop, Feb. 2018, https://www.disabilityscoop.com/2018/02/02/autism-journal-abandons-puzzle/24668/.
—. “Noted Self-Advocate Cuts Ties With Autism Speaks.” Disability Scoop, 14 Nov. 2013, https://www.disabilityscoop.com/2013/11/14/noted-cuts-ties-autism-speaks/18893/.
“For the Record.” Autism Speaks, https://www.autismspeaks.org/Autism-Speaks-facts. Accessed 30 Sept. 2021.
“Meet Valerie P.” Autism Speaks, https://www.autismspeaks.org/profile/meet-valerie-p. Accessed 23 Nov. 2021.
Perspectives on a Puzzle Piece. 14 July 2007, http://web.archive.org/web/20070714093137/http:/www.nas.org.uk/nas/jsp/polopoly.jsp?d=364&a=2183.
Pitney. Autism Speaks Contoversy. http://www.autismpolicyblog.com/2013/11/autism-speaks-contoversy.html. Accessed 23 Nov. 2021.
Robinson, John Elder. “I Resign My Roles at Autism Speaks.” I Resign My Roles at Autism Speaks, 13 Nov. 2013, http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html.
Rosenblatt, Adam. “Autism, Advocacy Organizations, and Past Injustice.” Disability Studies Quarterly, vol. 38, no. 4, 4, Dec. 2018. dsq-sds.org, https://dsq-sds.org/article/view/6222.
Thierry, Lauren. Autism Every Day. Autism Speaks, Milestone Video, The October Group, 2006.
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