Medicalisation of autism has consequences
The EU seems stuck in eugenics. Despite wars and other evils, the mindset remains. I bring this up in light of a recent article from the European Commissions’ Horizon magazine.
The article explores supposed connections between gut microbiome research and autism (ugh, that again). I’ve already debunked that here. Nevertheless, here, the author makes a noteworthy omission regarding the initial identification of autism. Whilst the piece situated first recognition of ‘autistic traits’ in the 1940s, you and I both know that child psychiatrist Grunya Sukhareva first described symptoms aligning with autism spectrum conditions in 1925 Russia (see here and here and my book). Given the eugenics movement’s fascination around causes and cures, this glaring erasure risks perpetuating questionable assumptions if left unaddressed.
Sukhareva’s work emerged from assessing how to support citizens with atypical development to actively contribute following Russian societal traumas—a divergent context from the Western medically-defined pathology paradigm that gained prominence years later. However, acknowledging these contrasting historical frameworks highlights ongoing tensions around whether autism constitutes an inherent disorder in need of treatment or an alternative way of being requiring accommodation. As such, failures to recognise Sukhareva’s initial insights facilitate narrow assumptions that autism is defined by deficits awaiting correction only recently made visible rather than a longstanding natural variation (again, as noted in my book).
Problematic omissions enable problematic narratives. In assessing autism research, we must critically examine what conceptual distortions arise from utilising an incomplete historical lens as well as how this influences material outcomes for autistic people ourselves regarding self-determination. Doing so makes clear the stakes of such framing for whether those embracing neurodiversity get centered as rights-bearing persons or anomalies awaiting remedy.
Let’s go a bit deeper …
As I’ve written, Dr. Sukhareva first described autistic symptoms in 1925 Russia in a context shaped heavily by the need for societal support and inclusion following the mass trauma and population losses of WWI and the Russian revolution. Her identification of what she called “schizoid psychopathy in children” stemmed from assessing how to enable all citizens, including those with mental disabilities and developmental differences, to actively participate in and contribute to society during a period of incredible hardship.
Thus, Sukhareva’s foundational observations emerged from a lens not solely focused on clinical diagnosis or treatment of deficiency, but on ensuring even those exhibiting atypical behaviors could find community belonging. This standpoint diverges starkly from the Western medical model of intellectual disability that broadly took hold in the mid-20th century categorising deviations from “normal” cognition and functioning as individual pathologies to cure or eliminate.
Framing autism primarily as recently “discovered” by Western medicine facilitates positioning it as an unambiguous disorder inherently requiring and awaiting medical solutions like those proposed in the article. Yet as Sukhareva noted nearly a century ago, those with alternative ways of being possess self-worth beyond medical metrics, with the ability to enrich their communities when provided appropriate support. Erasing recognition of these pioneering insights enables assumptions that risks, challenges, and gifts associated with ways of being like autism have escaped previous notice.
Ultimately, for autistic individuals, the narrative lens employed in the article carries lasting implications. Medical models emphasise identifying pathology within a person to remedy, whereas social models seek to remove barriers or provide appropriate support to facilitate self-determined participation. Prioritising visions centered on respecting variability and interdependence rather than defective normalcy remains vital.
Enough with the cures already …
So let me re-write the article for them. Here is a re-written version of the article that corrects the ableism, medicalisation, and outdated gut-brain claims:
Recent autism research projects have revived outdated claims of a gut-brain connection, despite such theories being scientifically debunked. Whilst exploring medical issues frequently accompanying autism has merit, problematic assumptions undermine this work.
Rather than a mysterious novel condition, distinct autistic traits were first identified in 1925 by psychiatrist Grunya Sukhareva in Soviet Russia through a lens of inclusion and support rather than pathology. However, Western medicine has since overwhelmingly medicalised and attempted to “cure” autism despite self-advocates stressing it as a natural variation, not sickness.
Present-day rhetoric of “curing” autism via questionable gut-based interventions echoes this misleading framework. All humans possess diverse neurological wiring, not definitive norms. Positioning non-conformity to typical development as something to eliminate risks eugenics and ignores actual support needs.
Whilst the original article showcases EU-funded research on connections between gut health and autism, no scientific consensus exists. The priority must be enabling those with different ways of being to thrive, not treat uniqueness as defects requiring elimination. Otherwise we risk the dignity of those who enrich communities in atypical ways.
Sukhareva recognised this risk nearly a century ago. Her insights reveal why discourse failing to recognise autism diversity enables real harm - whether malnutrition of individual potential or violation of basic rights and freedoms by narrow-minded conformity. We all lose when we cannot accept one another.