The Intersections of Race and Autism: Diagnostic Disparities and Marginalized Existence
I am a Black, queer, disabled, and non-binary individual. This is quite an interesting intersection to live at and one that I feel is important to discuss. I have multiple disabilities, autism being one of them. I am often asked to speak on disability since I am a disabled scientist, as well as a disabled activist. Within this article, I plan to expand on the topic of race and autism from both points of view by delivering data and statistics, as well as discussing the societal factors and experiences that impact those of us living at this unique intersection.I will focus on diagnostic disparities as a way of inviting readers to broader conversations on intersections of disability and race.
To begin, let’s define autism. It is defined medically by the DSM-5, a diagnostic tool used by psychiatrists and psychologists. The DSM-5 defines autism spectrum disorder as “deficits” in social communication, social interaction, social-emotional reciprocity, nonverbal communicative behaviors, and developing, maintaining, and understanding relationships (CDC, 2020).
The term “deficit” is defined as the amount by which something is too small (Lexico Dictionaries). I argue that not only is the term “deficit” derogatory when discussing our autistic lives, but also incredibly ableist. The implication of a behavior being “too small” is mandating some form of standardized behavior. People and their behavioral characteristics are not to be placed and assessed within a one-size-fits-all standard. Instead, our unique traits should not only be normalized, but celebrated. Furthermore, I define autism as a developmental disability that may affect one’s social and behavioral characteristics.
There is very little data and few statistics about race and autism. A 2017 study explored autism among U.S. children from the years of 2002-2010. The data showed the distribution of children who were diagnosed as autistic in multiple states during these eight years. White children comprised 55.8% percent of those diagnosed as autistic in this study. This majority population is indicative of the racial disparity involved in autism diagnosis. Non-white children amounted to 44.2% of those diagnosed. Specifically, Black children represented 20.4% of the diagnosed population, ethnically Hispanic children represented 16.6% of the population, and those of races classified as “other” (likely including various Asian communities and Native peoples) represented 7.2% of the diagnosed population. And overall, non-white children were the smaller group of those diagnosed as autistic (Durkin et al., 2017.)
We must interpret this quantitative data in the context of underlying racial disparities. Autistic people of color are less likely to be diagnosed as autistic. The CDC states that 1 in 54 children have been identified as autistic (CDC, 2020.) Although that statistic indicates the high prevalence of autism, minoritized populations are underrepresented in cases of autism diagnoses. The CDC has also published prevalence ratios of autism by race. The data indicate that white people are more likely to be diagnosed as autistic than Black people. (CDC, 2020.) This finding coincides with the other findings regarding the intersection of race and autism (Durkin et al., 2017.) It further illustrates the racial disparities in autism diagnoses.
A study by Hannah Fufaro establishes that racial and class disparities contribute to disparities in autism diagnoses. White children are about 19% more likely than Black children to be diagnosed, and 65% more likely than Hispanic (as labeled by the study) children to be diagnosed. Furfaro argues that some factors to consider are disparities in access to quality education, access to medical care, and access to behavioral or psychological support (Fufaro, 2017.) When applying data to life, I can attest that many autistic people that I’ve met who identify within a minoritized race or ethnicity are often diagnosed as adults. As a Black autistic person, I too was diagnosed as an adult.
Fufaro also discussed the intersection of autism and socioeconomic status. Only 17% of the white children that were diagnosed lived in impoverished areas. But 28% to 57% of the non-white population that were diagnosed lived in impoverished areas. Black autistic children were the most likely to live in impoverished areas – at 57% representation. The data and the lived experiences at the intersection of race and autism correlate with each other. White children and those of higher socioeconomic status are more likely than Black children and children of lower socioeconomic status to be diagnosed as autistic (Fufaro, 2017.)
Although this article has focused on the intersection of race and autism, we should also discuss the overall intersection of race and disability. Disabled folks consist of the largest minority group within the United States. We comprise an estimated 20% of the population – and nearly a quarter of Black people have some form of disability (Harriet Tubman Collective, 2016.) The intersections of race and disability are hardly discussed. Why? Possibly because disability is highly stigmatized in communities of color. In a 2020 study, non-Latinx Black youth and Latinx youth reported wanting significantly greater social distance towards peers with mental illness than non-Latinx white youth (DuPont-Reyes, 2020.) Mental illness is just one form of disability, but this data attests to the stigma towards disability in negatively racialized communities.
We can support the statistics with personal narratives too. The Atlantic Press published an article entitled, “What It’s Like to Be Black and Disabled in America.” One person who was interviewed said, “You have to scream out!” They added, “Being Black and disabled is a constant struggle.” (Gupta,2021) It is indeed a constant struggle. Racially and ethnically marginalized people are often excluded from and not allowed space in major disability organizations. Disabled people represent around 60% of those who are victims of state violence, if not more, and Black disabled people are disproportionately represented within that group. (Harriet Tubman Collective, 2016)
Overall, far too few discussions on race and disability have taken place, especially addressing how living at this intersection increases the likelihood of being brutalized by police officers. Our generation has seen a rise in radical activists that have created appealing hashtags such as #BlackLivesMatter and #SayHerName. Such movements have raised awareness of state incited violence against people of color; however, mainstream activists and advocacy organizations have rarely discussed the disability aspect of this narrative. Being Black puts one at a higher risk of being brutalized, shot, and killed by police – and being disabled further heightens this probability.
It is time for us to fight (in any way accessible and possible) against ableism, stigma, violence, and erasure of disabled folks in racially marginalized communities. This article is not for leisure reading, but a call to action. We are at a point where the goal turns from raising awareness to creating action. We are at a point where actions must be taken to simply stay alive as disabled people of color. We must bring forth actions that force the recognition of our lives and significance. This is our intersection. This is our lives. We matter.
Works Cited
“Deficit English Definition and Meaning.” Lexico Dictionaries | English, Lexico Dictionaries,https://www.lexico.com/en/definition/deficit.
“Diagnostic Criteria.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 29 June 2020, https://www.cdc.gov/ncbddd/autism/hcp-dsm.html.
DuPont-Reyes, Melissa J., et al. “Adolescent Views of Mental Illness Stigma: An Intersectional Lens.” American Journal of Orthopsychiatry, vol. 90, no. 2, 2020, pp. 201–211., https://doi.org/10.1037/ort0000425.
Durkin, Maureen S., et al. “Autism Spectrum Disorder among Us Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities.” American Journal of Public Health, vol. 107, no. 11, 2017, pp. 1818–1826., https://doi.org/10.2105/ajph.2017.304032.
Fufaro, Hannah. “Race, Class Contribute to Disparities in Autism Diagnoses.” Spectrum, 20 Nov. 2017, https://www.spectrumnews.org/news/race-class-contribute-disparities-autism-diagnoses/.
Gupta, Shalene. “’You Have to Scream out’.” The Atlantic, Atlantic Media Company, 19 Oct. 2021, https://www.theatlantic.com/ideas/archive/2021/09/what-its-like-to-be-black-and-disabled-in-america/620070/.
Bio
My name is Alex Toliver. I am unapologetically Black. I haven’t figured out my political label but one of my goals is to dismantle capitalism by joining fellow workers in seizing the means of production and restoring power to the people: ALL people. I am radically pansexual and non-binary. My pronouns are she/her and they/them. I actively work to decolonize my mind and I personally believe that gender binaries are compulsory in Westernized culture. Because my ancestors were forced into this culture, I have no desire to adhere to it. Thus, I simply don’t have a gender. Society often places an emphasis on my identities as an advocate and as a scientist. I am radically disabled. I do work to better the lives of those of us with disabilities. One of my greatest accomplishments in life was becoming one of the many cofounders of a dope collective of Black Disabled Activists. We are the Harriet Tubman Collective. Scientifically, I attended Johns Hopkins University. In 2015, I graduated with a B.S in Neuroscience and minors in bioethics in music. After I completed undergrad, I spent two years at Harvard Medical School completing a post-baccalaureate fellowship in the neuroscience department. I then went on to pursue my doctorate degree at Brown University. In 2019, I completed enough work to earn my masters in Neuroscience. I am currently in year 5 of my PhD and completing my dissertation. I am a National Science Foundation GRFP awardee and a Howard Hughes Medical Institute Gilliam Fellow. I have united my disabled experience and scientific endeavors by lecturing at various universities and on a host of panels. I also have attained scientific grants to promote training of disabled students in STEM. I serve on the Accesibility Advisory Committee at Brown University and I promoted increased support of disabled students as the Brown Neuroscience Diversity and Inclusion Action Plan Graduate Chair… so here we are. I am multiply marginalized and multifaceted.