Blackness x Neurodiversity III: How Society Systematically Denies the Existence of Most Autistic People
Hi, I’m autistic. And to be a bit more specific, I’m a nonverbal autistic person. Talking isn’t my preferred method of communication (I prefer writing and texting, which is part of why I wanna be a writer), and I have a limited amount of energy for speaking before I go completely nonverbal until my social battery recharges.
I didn’t realize I was autistic until last year during the pandemic at the age of 29 (I’m 30 currently) for reasons I’ll get to in a bit. I’m glad that I finally did realize that I’m autistic because it helped make sense of a lot of things about myself, especially with regards to why I was so different from most people around me (including most of my family); however, with the realization came a lot of melancholy.
Not because I was sad that I didn’t realize that I was autistic until I was well into adulthood, but because all of the systemic and institutional barriers that kept me from understanding an important part of who I am has blocked and continues to block so many autistic people of color (especially Black, South Asian, and Indigenous autistic people) from understanding that they’re autistic instead of believing that something is inherently wrong with them.
Now, I know some of you may be wondering how I know for sure that I’m autistic if I don’t have “an official diagnosis” and why I would even “want” to be autistic, some of you may think I’m doing this to be quirky or fashionable, some of you may fundamentally disagree with self-diagnosing, and some of you may wonder why race has to be involved.
So, let me explain.
First, it wasn’t a conclusion that I came to easily. I wrote a thread on Twitter about the entire process:
From February to October of 2020, after it was brought to my attention that I may actually be autistic, I spent a fuck ton time researching autistic people from the perspective of clinicians, teachers, caregivers, etc. and from the perspective of other autistic people; it took me weeks before I was comfortable even publicly stating that I may be autistic, it took even longer to finally accept that I am autistic, and through it all I tried to and was denied an assessment and diagnosis 99% of the time because all the non-Black medical and mental health professionals said that I “didn’t look autistic” for one reason or another.
Second, contrary to popular belief, self-diagnosis isn’t as problematic as we’re led to believe. In his article on Psychology Today titled “Is Psychiatric Self-Diagnosis Valid?”, Devon Frye says:
Let’s first look at the notion that self-diagnosis will be less reliable than a diagnosis from a professional. The issue here is an epistemic one, in that it relates to the higher level of epistemic credibility accredited to professionals in light of their training. It’s certainly worth reading Dr. Srini Pillay’s various examples of the kind of issues that self-misdiagnosis can lead to in practice.
While it’s true that misdiagnosis can be harmful, my issue with this argument is that is little evidence that accredited professionals are more accurate at diagnosing psychiatric labels than patients are. The authors of a 2006 literature review concluded that “The unreliability of psychiatric diagnosis… is a major problem in psychiatry, especially at the clinician level.” Other studies, like this one from 2018, have found that self-diagnosis is pretty consistent with professional diagnosis if the same screening tools are used. Part of the issue here may be that in psychiatric settings, the testimonies of patients are routinely overlooked due to prejudiced beliefs found in both medical professionals and the wider population. As Crichton et al found, in psychiatry, not listening to patients is often driven by prejudices regarding disability or mental health issues that “go unchecked because they operate below the radar of the conscious scrutiny of our own beliefs.”
Other prejudices that hinder medical diagnosis relate to gender and race. For instance, autism has often misleadingly been portrayed as a white and male condition. Even though this depiction has no proven scientific basis, clinicians routinely internalize such beliefs which can then reemerge as biases that can exclude women and people of color in clinical settings.
Given all of this, there seems to be good reason for many people to rely on self-diagnosis. Even though I agree that a medical professional should be consulted, when possible, it is far from clear that professionals should be accredited with significantly higher epistemic authority than those who self-diagnose.’
Third, there’s actually not that much research or statistics on Black autistic people out there. And a large part of that is due to how racism, white supremacy, and anti-Blackness affects how medical and mental health professionals assess Black autistic people. In a study titled “To address racial disparities in autism research, we must think globally, act locally” Desiree R. Jones and David S. Mandell found that:
Black children are less likely to be diagnosed with autism spectrum disorder (ASD) than White children, despite Black and White parents reporting first concerns when their children are of similar ages, and Black autistic children are often misdiagnosed with other psychiatric disorders. Among those diagnosed with autism, clinical presentation is more severe, on average, than that of White children, suggesting that Black children with less impairing symptoms are missed altogether. These diagnostic disparities may reflect providers’ racial biases; many Black caregivers of autistic children state that their provider has expressed doubts about the parents’ knowledge of autism or made racist assumptions about their family structure or income. These assumptions may cause providers to dismiss Black caregivers’ concerns about ASD.
[. . .] A meta-analysis of intervention studies found that most failed to report the racial and ethnic demographics of participants; the few studies that included this information reported overwhelmingly White participants. These disparities highlight a broader culture of exclusion and ignoring people of colour in autism research.
Perhaps unsurprisingly, this exclusion extends to Black autism researchers. Although the International Society for Autism Research (INSAR) has made concerted efforts to improve diversity, the society has provided no metrics of its success and the annual conference has had no Black keynote speakers in the 18 years for which records are available online. While diversity may have increased among students and early career researchers, underrepresentation persists at all career levels. Although it is impossible to ascertain the race with which awardees identify without asking them, our search of federally and privately funded autism-related fellowship applications at the doctoral, postdoctoral and junior faculty levels revealed very few Black trainees.
While select grants and fellowships in autism research prioritize underrepresented trainees, these apply exclusively to research on disparities. This restricts Black students’ opportunities in other research areas and promotes diversity in a very narrow range of autism research. Organizations such as INSAR further limit the platform of Black researchers by merging cultural diversity among researchers with the connected, but distinct issue of cultural diversity among the people they study. While many related research professional organizations (Society for Research in Child Development, American Psychological Association, and Society for Neuroscience) include caucuses to support the needs of Black researchers, no such caucus, committee, or organization currently exists in autism research. INSAR has recently published a statement (INSAR Board of Directors and Cultural Diversity Committee, 2020) acknowledging the lack of diversity in autism research and promising to address these issues, but this alone is not sufficient for dismantling the toxic effects of systemic racism in our field. Instead, individuals, organizations, and institutions must work together, taking sustained action to address these inequalities and promote Black autism researchers.”
Much has been invested in a search for biological evidence that would allow mental disorders to be considered ‘true’ diseases by this logic. Szasz’s response was always that, were this to be successful, the result would be a category shift whereby the condition would cease to be considered a ‘mental illness’ and become a ‘neurological’ one instead. Despite decades of intensive research, there is still no conclusive evidence that enables any of the major categories of mental disorder, including schizophrenia, depression, anxiety and attention-deficit hyperactivity disorder (ADHD), to be considered a neurological condition in this way.
The fact that there are some subtle group differences between people with some diagnoses and ‘normal controls’ in aspects of brain structure or function does not demonstrate the presence of a neurological disease. None of the findings are sufficiently specific or capable of differentiating between a person who is thought to have a particular mental disorder and one who is not. Diagnosis is still made on the basis of behaviour, thoughts and feelings that are reported by the individual or those around them and that depend, of course, on judgements about what is ‘normal’ and what is not.
And fifth:
It is becoming increasingly clear in research and the public domain that autistic females are different from autistic males. The criteria for diagnosing autism originated based on the presentation of boys, leading to a gender-biased understanding of autism. Autistic females are underdiagnosed, particularly in individuals without an intellectual development disorder. Gender bias leads to fewer referrals for females, later diagnoses, missed diagnoses, and misdiagnoses.
Now, with all of that said, if you know anything about autistic people, how autistic people have historically (and continue to be) portrayed in the media, and how people are “diagnosed,” you’ll know that it’s all centered on white autistic people – and mostly, cisgender, heterosexual white autistic boys and men.
In the media, they’re either portrayed as – which I will preface as saying that these are fundamentally racist, white supremacist, anti-Black, ableist, and eugenicist ways to describe autistic people – either “mildly autistic” (usually the “genius types” aka people who were diagnosed with “Asperger’s Syndrome” (and, more recently, “level one autism”), which I’ll talk about when I get around to writing about critical psychiatry and critical psychology) or “severely autistic” (usually the “tragically autistic” autistic people).
Some examples of both of these stereotypes of autistic people portrayed in the media – which controls the dominant narrative of who gets to be autistic (mostly white people, namely cis het white men), what autistic people are “actually” like (or who is and isn’t “truly” autistic), affects how people are “diagnosed” as autistic (including how autistic people are studied by psychiatrists and psychologists, which affects the diagnostic criteria for “autism” as a “mental illness” or “mental disorder) – are Raymond Babbitt from Rain Man, Sheldon from The Big Bang Theory and Young Sheldon, Sam from Atypical, Shaun Murphy from The Good Doctor, and Sherlock from the BBC’s Sherlock.
And when you consider the ubiquity of those one dimensional caricatures of autistic people, it makes sense why globally we think autistic people are a rare and “disordered.”
And because we’re conditioned to see autistic people as being inherently disordered people who “have” a “mental illness” called “autism” that’s painted as a tragedy that befalls the families of autistic people – thanks to the anti-vaxx movement, organizations like Autism Speaks, the government, and institutional and systemic ableism and eugenics – so many autistic people, especially queer and trans autistic people of color (especially if they’re Black, South Asian, or Indigenous), don’t know they’re autistic, and are either unable to or won’t ever be “diagnosed” by medical and mental health professionals – much less seek out a “diagnosis” themselves.
Given all that I’ve said, you can see why it took me until I was 29 to learn that I was autistic, and why it’s both relieving to finally know and an event that fills me with melancholy every now and again. And this isn’t even taking into consideration the role “masking” played in all of this (which I’ll also address in the future).
And I know there will still be a ton of naysayers for any reason under the sun, and there ain’t shit I can do about that. All I can say to y’all is that I know myself better than y’all do, and it would be impossible for you to tell me I’m wrong about myself.
To be sure, it’s important to understand that none of what I’ve said will help you understand every single autistic person. I intentionally didn’t talk about things like “sensory processing disorder,” social and communication skills, and “special interests” (more on this later) because I don’t think it’s particularly useful for me to talk about autistic people in a way that validates, centers, and upholds the inherently oppressive, exclusionary pathology paradigm.
And this isn’t to say that I don’t think it’s useful to know what the diagnostic criteria are if you’re trying to figure out on your own whether or not you’re autistic, or if you’re helping someone close to you figure out whether or not they’re autistic. I wouldn’t know that I was autistic if I didn’t go that route.
What I mean is that because all the stereotypical behaviors and such used to “diagnose” and write about autistic people are based mainly on how young, cisgender, white autistic boys from Western, educated, industrialized, rich, and Democratic backgrounds navigate the world from the perspective of non-autistic (or allistic) medical and mental health professionals (most of whom are white, most of whom are men, most of whom come from the aforementioned backgrounds), the diagnostic criteria doesn’t help humanize autistic people, it’s antithetical to the neurodiversity movement and the neurodiversity paradigm, and they inherently leave out the perspectives and experiences of all autistic people who aren’t young, cisgender, privileged, white boys.
One of the main reasons why it took me so long to be certain about the fact that I’m autistic is that all of the information I came across was all about white autistic people, young white autistic boys in particular, and all the YouTubers and other YouTube videos I came across that were from the perspective of autistic people.
During the few weeks that I contemplated whether or not I was actually autistic since I couldn’t find anything about Black autistic people, I would say, “I don’t know for sure if I’m autistic, but xyz experiences that these white autistic people are talking about perfectly explains my experiences and why I do/don’t do xyz.”
In the future, when I figure out what I want to say, I’ll probably talk about what it’s been like growing up not knowing I was autistic, the impact that lack of knowledge had and continue to have on my life, and some of my autistic traits; however, what’s more important to understand is that even though all autistic people may have similarities, just like any other marginalized community in the world, each autistic person is an individual.
We aren’t a hive mind, we aren’t a monolith, and we aren’t all privileged cis het white people.
To paraphrase Dr. Stephen Shore, “If you know one autistic person, you know one autistic person.”
