Autism research's diversity problem: a look at the roots of the problem
Maybe it's a feature and not a bug
A recent article from StatNews emphasises that autism research populations, like the SPARK study, remain predominantly white, despite recent increases in autism diagnoses among children of colour. This lack of diversity in research participation is a significant issue, as it limits scientists’ ability to comprehensively understand autism across all racial and ethnic groups. For example, researchers are currently unable to fully explore the reasons behind the higher co-occurrence of intellectual disability diagnoses in Black autistic children compared to their white counterparts.
The author argues that diversifying research participation will not happen organically; instead, researchers must take active, deliberate steps to engage with communities of colour. This engagement involves rebuilding trust, expanding access to diagnostic and support services, and ultimately encouraging more diverse families to participate in autism research.
The article portrays this outreach as essential for several reasons. First, it ensures that research findings are relevant and applicable to the full diversity of the autistic population. Second, it helps direct more research-derived knowledge, resources, and services back to underserved communities. Finally, it addresses racial disparities in access to autism diagnoses and care.
Thus, the article asserts that autism research has historically been skewed towards white participants, and researchers have a responsibility to proactively connect with communities of colour. The goal is to achieve more diverse, representative, and equitable research participation and outcomes. The author frames the current state of autism research as both a scientific and ethical imperative that must be addressed.
But … there are several glaring omissions in the piece.
The author calls out SPARK for not being inclusive, without noting that this lack of inclusion might not be a bug but a feature. Head on over to SPARK to see what they say about themselves. I did. I noticed a ton of things that need calling out.
Firts, the omission of Dr. Grunya Sukhareva’s groundbreaking work in the SPARK overview is a significant oversight that warrants further discussion. Dr. Sukhareva, a Soviet psychiatrist, published detailed descriptions of children displaying autistic traits in the 1920s, well before the more widely recognised work of Leo Kanner and Hans Asperger. Her contributions were largely overlooked by the Western scientific community, likely due to a combination of language barriers, political tensions, and a lack of recognition for the work of women and researchers from non-Western countries.
It is important to acknowledge that Dr. Sukhareva's approach to understanding and supporting autistic children differed significantly from the perspectives of Kanner and Asperger, who were influenced by the eugenics movement and the concept of “perfecting” humanity by eliminating “undesirable” traits. In contrast, Dr. Sukhareva focused on supporting autistic children and integrating them into Soviet society, which was in the process of rebuilding after the devastating effects of the Russian Revolution. Her work emphasised the importance of understanding the unique needs and strengths of each child and providing appropriate support and interventions to help them thrive.
The different historical and sociopolitical contexts in which these researchers operated had a significant impact on their approaches to autism. Whilst Kanner and Asperger’s work was shaped by the eugenics movement and the idea of creating a “perfect” society, Dr. Sukhareva’s work was rooted in a post-revolutionary context that emphasised the value and potential of all individuals, regardless of their differences. This contrast highlights the need for a more inclusive and comprehensive understanding of the history of autism research, one that acknowledges the contributions of diverse researchers and the impact of societal values on scientific inquiry.
Recognising Dr. Sukhareva’s pioneering work is not only a matter of historical accuracy but also an opportunity to learn from her approach, which emphasised empathy, understanding, and support for autistic individuals. By acknowledging her contributions and the different perspectives she brought to the field, we can work towards a more inclusive and compassionate approach to autism research and support, one that values neurodiversity and seeks to create a society where all individuals can thrive.
And yet …
SPARK’s control of the narrative surrounding autism research and their omission of Dr. Sukhareva’s work raises serious concerns about the direction and potential misuse of their genetic mapping efforts. By failing to acknowledge and learn from Dr. Sukhareva’s empathetic and inclusive approach to understanding and supporting autistic individuals, SPARK risks perpetuating the harmful legacies of Kanner and Asperger, whose work was intertwined with the eugenics movement and Nazi race science.
The development of prenatal screening tests for autism based on genetic information is a deeply troubling prospect that could lead to the systematic elimination of autistic individuals before they are even born. This echoes the dark history of eugenics, which sought to create a “perfect” society by weeding out those deemed “undesirable” or “unfit.” The fact that SPARK, a major autism research initiative with both public and private funding, is pursuing genetic mapping without openly addressing these ethical concerns or engaging with the perspectives of autistic individuals and advocates is alarming.
Moreover, SPARK’s exclusion of Dr. Sukhareva's work from their historical overview suggests a deliberate attempt to control the narrative surrounding autism research. By focusing solely on the contributions of Kanner and Asperger, who were influenced by eugenics and race science, SPARK is effectively erasing the legacy of a researcher who challenged these harmful ideologies and advocated for a more compassionate and inclusive approach to supporting autistic individuals. This selective retelling of history raises questions about SPARK's true motives and their commitment to neurodiversity and the well-being of the autistic community.
The potential misuse of genetic information to eliminate autistic individuals before birth is a chilling reminder of the dangers of unchecked scientific pursuit without ethical considerations. It is crucial that autism research organisations, including SPARK, engage in transparent and inclusive discussions about the implications of their work and actively involve autistic individuals and advocates in shaping the direction and priorities of their research. Failure to do so risks perpetuating the harmful legacies of the past and contributing to the further marginalisation and devaluation of autistic lives.
In light of these concerns, it is essential that the autistic community, advocates, and allies remain vigilant and continue to challenge narratives that prioritise genetic “solutions” over understanding, acceptance, and support. We must demand transparency, accountability, and the centering of autistic voices in research initiatives like SPARK. Only by confronting the troubling historical roots of autism research and actively working to create a more inclusive and equitable future can we ensure that the rights and dignity of autistic individuals are protected and upheld.