(source: Autistic UK)
Being Black in the US necessitates a kind of hyper-visible invisibility in the spaces that can have the most impact on your life (ex: education, law, and economics), and having to be part of the vanguard to make people realize that the group of humans they unnecessarily hate the most – shout-out to white people who made and continue to make this possible – are actually an endless sources of creativity and a net positive for x institutions.
One of the traps we often fall prey to is the “get the formal education and training, then change things from the inside” trap. Because it argues that the inner-workings of the institutions that are institutionally hardwired to keep us out and oppress up will somehow be less hostile to any new Black individual who dares swim against the current. And that once inside, the unmistakable brilliance of said new Black individual will convince those socialized to think Blackness un-brilliant will betray their very nature, and hop on board with any new ideas.
We all know that is an exception to the rules within places where many contradictions are also rules. Yet, it’s a myth we all believe in because the fiction is more inviting than the truth we face on the daily.
And it is once again something I have to contend with when looking at the vacant lot that is Blackness in Autism.
Now, I don’t mean this to say that there aren’t any Black people who’ve been professionally diagnosed with autism. They exist. The issue, though:
Black children are less likely to be diagnosed with autism spectrum disorder (ASD) than White children (Mandell et al., 2009), despite Black and White parents reporting first concerns when their children are of similar ages (Jang et al., 2014), and Black autistic children are often misdiagnosed with other psychiatric disorders (Mandell et al., 2007). 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 (Jarquin et al., 2011). 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 (Dababnah et al., 2018). These assumptions may cause providers to dismiss Black caregivers’ concerns about ASD (Magaña et al., 2015; Pearson & Meadan, 2018).
[. . .] 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 (West et al., 2016). 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.
And to give an example of how common it is to deny Black people an autism diagnosis, here a comment from my other post where I address how the mental health industry fails Black people:
And this is just one of many instances where someone heard snippets of my life, had very few and/or very limited (time-wise) encounters with me, read something in paperwork I filled out, and decided there’s no possible way I could be autistic. I was “too smart,” “too self-aware,” “too academically accomplished,” “too functioning” to be autistic.
The comment above is the first time a stranger decided to weigh in completely unsolicited. And also the first time I heard someone imply that I’m too traumatized to be autistic.
The others were encounters I had with psychiatrists, psychologists, and social workers who despite saying that they’ve only studied autism in school and aren’t qualified to diagnose anyone with autism, they were for sure certain that I wasn’t autistic.
It makes me wonder if people understand what’s meant when we say autism is a spectrum, and that knowing one individual autistic person or many different autistic people does not mean you know every autistic person and all there is to know about autism (especially because of how limited the existing body of knowledge on autism is in scope).
One of my favorite justifications also was that some adult in my life between kindergarten and the end of high school (1995 – 2008) would’ve noticed and had me tested.
As if severely underfunded public schools in poor Black and Latinx communities in the NYC had the resources to even do that, let alone the notion that Black parents struggling to make ends meet in the NYC during that time even had the bandwidth to consider if their children were autistic on top of everything else.
And I highly doubt autism research that existed between those thirteen years were nearly as nuanced or inclusive as autism research and advocacy is today.
Autism didn’t even really exist as a reality in my world until last year because of how white autism is.
And that leads us back to the vacant lot.
Something that I found interesting in my exchanges with professionals was a dismissal of my autism due to the fact that I’m also bipolar, I have anxiety, and my trauma is no stranger to my life. As if autistic people can’t also be bipolar, have anxiety, and experienced a lot of trauma throughout their lives.
And that, to me, is one of the key issues preventing more Black people (and other PoC) from getting properly diagnosed: the lack of research on how racism, white supremacy, and anti-Blackness affect how autism presents differently in Black people than white people. Because Black people don’t have the luxury of not experiencing racial trauma, which means Black autistic people are having to find ways to navigate a world that’s hostile to both Black and autistic people with far less resources than the white boys and men from privileged backgrounds who take center stage in autism research and, consequently, diagnostic criteria and therapy available for autism and autistic people.
And then factor on gender, sexual orientation, class, etc. and all the trauma inherent to being a marginalized person – especially if you sit at the intersection of many (in my case poor, queer, gender neutral, autistic, and Black) – and you start to see how research into autism (and other psychiatric conditions that fall under the neurodiversity umbrella) fails to consider the experience of billions of autistic people around the world, and reproduces data that continues to keep them out of autism research (which is made worse by the fact that not much is being done to actually address the lack of diversity in psychology research, and the lack of diversity in psychiatry).
All of which inherently continues to leave vacant the lot that should be filled with intersectional research on autism, specifically regarding Blackness and autism. And since joining the field and accomplishing many firsts doesn’t seem like the best way to affect change, Black people often have to rely on self-diagnosis to create our own space within the autistic community.
And I know that people often discredit the validity of self-diagnosis; however:
While it’s true that misdiagnosis can be harmful, my issue with this argument is that there 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 (2017) 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 internalise such beliefs which can then reemerge as biases that can exclude women and people of colour 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.
For too long Black autistics have been denied our reality as being autistic because people don’t imagine Black Autism to exist. And were it not for social media and internet access, many more of us would’ve went our entire lives not knowing something important to who we are.
And it’s better to do it from the outside rather than trying to reform an institution that cannot be reformed. Because you can’t reform racism, white supremacy, and anti-Blackness out of psychiatry and psychology; however, we can help lead the charge for a radical approach to mental health that doesn’t treat people unnecessarily as “disordered,” “sick,” or “ill” using diagnositc criteria that creates more problems than it solves.