Autism and Society: Challenging the Narrative of Eradication
Navigating a world that is often unaccommodating and sometimes outright hostile is a daily challenge for me as an autistic person. This challenge becomes even more pronounced when considering the vast amounts of money funneled into research aimed at detecting and potentially eliminating autism. Studies like the recent one conducted in China, which explores gut microbiota markers for autism, and this ‘gene study’ in England, underscore a troubling trend. They reflect a societal desire to “fix” or eradicate autism, rather than support and understand autistic individuals. Using the Power Threat Meaning Framework (PTMF), it becomes clear that this research approach has significant implications for autistic people like me.
The medical community holds significant power in defining and addressing autism. This power is evident in the resources allocated to research aimed at early detection and ‘prevention’ of autism. The study conducted in public hospitals in China, which seeks to identify gut microbiota markers for autism, exemplifies this power dynamic. The underlying goal, though not always explicitly stated, appears to align with a broader societal objective of reducing the prevalence of autism, akin to the prenatal tests developed for Down syndrome. This power extends to the narratives created around autism. The focus on finding a “cure” or a means to ‘prevent’ autism suggests that autistic lives are less valuable or that autism is a condition that should be eradicated. This perspective fails to recognise the inherent worth of autistic individuals and disregards the diversity and richness they bring to society.
For autistic individuals, the threat posed by such research is both existential and immediate. The emphasis on detection and elimination implies that our existence is undesirable. This message is profoundly threatening, as it suggests that society would prefer a world without us. The financial disparity between research funding and support services further exacerbates this threat. Whilst millions are spent on studies to detect autism, there is a glaring lack of funding for services that support autistic adults. In many regions, including my own, resources for employment support, mental health services, and community integration are scarce or non-existent. This lack of support forces many autistic adults to navigate life without the necessary tools and assistance, leading to increased isolation and hardship.
Living under the constant threat of being “cured” or eliminated takes a significant psychological toll on autistic people. The anxiety many of us feel is not solely due to our neurological differences but is compounded by living in a society that is not only designed without us in mind but is openly hostile to our existence. The PTMF helps us understand how the medical community’s power and the existential threat it poses lead to profound psychological distress. The meaning we derive from these experiences is one of rejection and devaluation. It is difficult to reconcile the message that our existence is a problem to be solved with any sense of self-worth or belonging. This societal hostility manifests in various ways, from everyday interactions to systemic barriers. The constant need to justify our existence and fight for basic accommodations creates an environment of chronic stress and anxiety. For many autistic individuals, this results in mental health challenges, including depression and heightened anxiety, further complicating our ability to thrive.
The focus of autism research and funding must shift from detection and elimination to support and inclusion. This requires a fundamental change in how society views and values autistic individuals. Rather than seeing autism as a condition to be eradicated, it should be recognised as a natural variation of human diversity. Funding should prioritise services that directly improve the quality of life for autistic individuals. This includes employment support, mental health services, and community integration. Programs that help autistic adults find and maintain meaningful employment, accessible mental health care that understands and addresses the unique needs of autistic individuals, and initiatives that promote social inclusion and acceptance are all critical.
The current trajectory of autism research, exemplified by the study on gut microbiota markers, reflects a troubling prioritisation of detection and elimination over support and inclusion. Using the PTMF, we see how the medical community’s power threatens the existence of autistic individuals, leading to significant psychological distress. Again, as an autistic person, it is disheartening to witness the vast resources directed towards studies that seek to diminish our presence, whilst so little is invested in supporting those of us who are here, alive, and in need of assistance. The message is clear: society values the eradication of autism more than the well-being of autistic individuals. This critique calls for a reevaluation of research priorities and funding allocations. It advocates for a shift towards recognising the inherent worth of autistic individuals and investing in services that enhance our quality of life. Only by doing so can we begin to create a society that truly values neurodiversity and supports all its members.
Note: This article sparked a ton of comments on LinkedIn, which led to two more articles. Here they are:
I enjoy reading your thoughtful and well written articles on this topic of how society wants to erase the existence of autistics rather than accept autism as a natural variation of the human condition. What most people don’t understand is how reliant most if not all humans are on some form of technology and support from others for survival. We would not survive long by ourselves without resources and tools.