Open Society

When it comes to human neurodiversity, the dominant paradigm in the world today is what I refer to as the pathology paradigm. The long-term well-being and empowerment of Autistics and members of other neurocognitive minority groups hinges upon our ability to create a paradigm shift – a shift from the pathology paradigm to the neurodiversity paradigm. Such a shift must happen internally, within the consciousness of individuals, and must also be propagated in the cultures in which we live.

My MSc and Ph.D. research were into the utility of the minority stress model for understanding poor mental health in the autistic community (Botha and Frost, 2020), and whether autistic community connectedness would buffer against the effect of minority stress on mental health (Botha, 2020). I used qualitative and quantitative methods, and did four studies—a qualitative, critical grounded theory investigation into autistic community connectedness; a scale creation and evaluation study for measuring autistic community connectedness; a cross-sectional investigation into whether community moderated the effect of minority stress on mental health in autistic people; and finally, a longitudinal study investigating the effect of minority stress and autistic community connectedness over time.

The minority stress model posits that social disadvantage and marginalization results in an increased burden, which in turn can result in mental and physical health disparities (Meyer et al., 2002; Frost et al., 2015). Predominantly, it has been used to investigate the health disparities seen in the queer community. The focus in the minority stress model shifts away from there being something inherent about LGBTQ+ communities and focuses instead on the experiences that sexual and gender minorities have within society. It sounds cliché, but it was a light-bulb moment—it was a lens through which I could reflect on an entire lifetime of experiences and make them coherent for once. Yet, as an idea, minority stress ran counter to the literature which associated the traits of autism itself with suicidality (Mikami et al., 2009), centered suffering as inherent to autism (Baron-Cohen and Bolton, 1993), or focused on the specific thinking styles of autistic people as causative of poor mental health—as if autistic people exist in a societal blackhole, and would still suffer in the absence of our entire social structure. It is not hard to see the potential utility for the minority stress model when you pause and take stock of how autistic people are treated in society. The minority stress model captures the some of the complexity of existing while autistic. Autistic people are stereotyped—and the vast majority of stereotypes are negative (Wood and Freeth, 2016). Autistic people face employment discrimination, higher unemployment, and underemployment, as well as experiencing bullying in the workplace (Shattuck et al., 2012; Baldwin et al., 2014). Autistic children are more likely to be excluded from schools (Timpson and Great Britain, 2019). In the United Kingdom (UK), one-third of autistic people have access to neither employment or welfare payments (Redman, 2009), while 12% of Welsh autistic adults report experiencing homelessness (Evans, 2011). Statistics show disproportionate use of force against autistic people and those with learning disability in the UK (Home Office, 2018), while a third to half of all incidents involving the use of excessive force by police involves a disabled person (Perry and Carter-Long, 2016)—experiences which will obviously be further compounded by institutional racism (Holroyd, 2015). Autistic individuals are more likely to experience (poly)victimization, including being four times more likely to experience physical and psychological abuse from adults as children, 27 times more likely to experience teasing, and seven times more likely to experience sexual victimization (Weiss and Fardella, 2018). At the extreme end of the victimization—autistic children are more likely to die to filicide (Lucardie, 2005). Autistic lives are marked by an often-astounding excess stress burden across the life span. Considering the study by Hirvikoski et al. (2016), I chose to study mental health and minority stress because people like me were (and still are) dying to suicide in their droves. To be clear, wanting a better future for my community is a value, and my work embodied it from the very beginning. I was propelled by values. How can you belong to a community who is actively suffering, and not want to make it better anyway that you can?

I found that exposure to minority stress does predict significantly worse well-being and higher psychological distress in the autistic community (Botha and Frost, 2020), including exposure to victimization and discrimination, everyday discrimination, expectation of rejection, expectation of rejection, outness (disclosure), concealment (masking of autism), internalized stigma, and it explains a large and significant proportion of the variance—in lay-man's terms—the constant marginalization of autistic people is contributing to high rates of poor mental health. Aside from this, I noticed that despite being normally distributed (and not containing outliers), the mean psychological distress score was above the cut-off for indicating severe psychological distress (Kessler et al., 2003). Between the sadness of these findings and being exposed to all of these disturbing accounts of autism I considered (albeit briefly), giving up on academia all together without pursuing my Ph.D.

The poster detailed my MSc paper which found that a large proportion of the variance of poor mental health and well-being could be explained by exposure to minority stress, and parts of my first study of my Ph.D.—a qualitative investigation into autistic community connectedness. A conference delegate asked, “why did you do this research?.” I disclosed being autistic, and pointed to the clear need for the research and the delegate's response was “oh… are your supervisors? I just worry that you might be biased in, like… you know… this research?.” In that moment I recalled reading all the accounts that I detailed above—all these “objective” accounts of my sub-humanness. I asked the delegate what they meant, and they explained further that they are not necessarily sure that an autistic person would be best placed to talk about autism, but that it should be fine as long as I have non-autistic research supervisors checking over my work, to make sure that I am being “fair,” and “equal” in my representation of autistic people. I was discounted again.

In the end, my thesis (Botha, 2020) showed that autistic community connectedness buffered against some of the effects of minority stress and was related to better mental health over time. Yet, I worry constantly that by trying to measure a function of autistic community connectedness, that I objectified it, in a way not dissimilar to the way people objectify autistic people—especially if others come to conflate the function of autistic community connectedness with its value. I studied autistic community connectedness, because I was worried that to only study minority stress would be to see only the worst of what happened to autistic people, and not appreciate our lives as a whole—which are much bigger than our trauma. But, to me, the numbers only explain a mechanism—the real joy, the real value, and the beauty of the autistic community was captured in my very first study. Autistic people talked about the autistic community with such a warmth, brightness, and with hope. The vibrant stories of belongingness, friendships, and political strength tell you exactly what you need to know about the value of such a community. This is something, that its function cannot, and should not even tell you.

Epistemic injustice pervades autism research in a way that only ever marginalizes autistic people in knowledge creation while providing an almost all-encompassing blanket of protection for non-autistic researchers—non-autistic people have an assumed objectivity that means they do not have to defend their involvement in the creation of knowledge.