Autism is Not a Disease – review

As someone who has always existed on the fringes of society, it may shock people to find that the most destabilising part of my marginalisation that undercut all my identities – being neurodiverse – is the only one I really started to understand well into adulthood. It was the only time I had a name for it, and I could express to people what I meant by it and how it impacted my life. Growing up and understanding that neurodiversity existed beyond white boys who were autistic, Jodie Hare’s Autism is Not A Disease: The Politics of Neurodiversity is a perfect foundational book encouraging us to challenge misconceptions we have on neurodiversity namely autism, through key concepts and her own experiences as an autistic person.

The book opens by highlighting the juxtaposition that exists between the growth of the neurodiversity movement in parallel to a very stagnant understanding of neurodiversity, particularly autism. Hare points out how neurodiversity has started to be weaponised by people who understand it the least, including the state, for their own agendas at the individual, collective and structural levels of society, contributing to ‘the word being stripped of its political potential’. 

A misunderstood yet growing movement

Hare’s introduction where she points to the flaws and implications of such rigid understandings and applications of disabilities and neurodivergence resonates especially. Through the retelling of the history of neurodiversity with specific focus on autism, Hare highlights Judy Singer as the propagator of the idea of neurodiversity. I wish Hare had illuminated the present controversies surrounding Singer and how she has deliberately chosen to sideline online autistic communities who not only developed the idea of neurodiversity but also organised around it. What is even more terrifying is Singer’s lack of political consistency as she fails to make the links with the collective struggles of the transgender community and chooses to contribute to their discrimination and the transphobia they face. So whilst Hare is wrong in her illumination that Singer popularised the term neurodiversity from online communities, she is correct in illuminating that Singer was not the first to theorise about  and offers alternative beginnings that contributed and moved our understanding of autism – a history I was not even aware of.

Our medicalised understanding of autism in particular can be traced to Eugen Blueler, who coined the term in 1911. Phsyciatrist Leo Kanner built on this foundation, introducing the concept of autism to the world in 1943. Singer’s own contribution was to encourage a paradigm shift in understanding for people with autism and beyond that that their difficulties were not symptoms of disorders or disease: it was not just about having autism versus not having autism, or being normal versus pathological but that there were direct and devastating consequences of living in a world organised to meet the needs of the neurotypical or neuroconformist majority.

Despite ongoing complaints around online spaces enabling self-diagnosis, Hare demonstrates in her book that the significance of internet chatrooms, forums and culture is normal in linking neurodiverse people with one another. Hare highlights through Singer’s own research on the internet that this only further helps strengthen our shared experiences and our calls to liberation for those who do not exist in a neuroconformist reality. 

Introducing readers to these foundational concepts, Hare enables her book to be in conversation with more advanced and critical understandings of neurodiversity such as Robert Chapman’s Empire of Normality which highlights the limitations of viewing neurodivergence, in this context autism, as being good or bad. Chapman builds on this by rejecting binarised value based judgments and instead calls for a holistic focus on the impact of autism on our other cognitive functions. For me, this understanding is important because it provides an opportunity for people, at different starting points in understanding their diagnosis or lack of, in relation to the world, to find and demand the resources and support they need – whatever that may look like.  

As someone who still does not understand their neurodiversity, it was really important for Hare to introduce ideas of neurodiversity and the framework it exists in away from a pathologilising model because of how limiting definitions and boundaries of neurodivergence are. Which of my mental illnesses make me neurodiverse? Where do these experiences of neurodivergence start, meet and end? How do they interact with one another? Most importantly, what are the implications for me, someone who is already pathologised, in the world?

I found how Hare forces us to think about the language we use within the neurodivergence framework useful, not only because attempts to be politically correct for autistics or more generally disabled people (i.e. the use of ‘person with autism’ or ‘person with disability’ respectively) end up contributing to disableist discrimination and ironically pathologise them even more by their experiences into a disease. 

Neurodivergence in our other collective struggles

I particularly enjoyed how Hare linked her ideas on the problematic nature of categorising forms of neurodivergence like autism as diseases because it reaffirms my own thoughts towards how biased such categories can be. Many disease categories reflect how the world is organised and binarised, whereas the experience of any disease does not exist in these confines. This is made clear by Hare’s unpacking the political nature of neurodivergence as she explores the discrimination, brutulisation and violent victimisation autistic people face in their lives. Importantly, Hare highlights the unspoken element of the neurodiversity movement – as with many liberation movements – the disproportionate impact of neurodivergence, on people from minoritised communities. 

Discrimination is never distributed universally. I wish Hare explored the layers of oppression neurodivergent people, especially autistic people, face in more depth, for example a black women with co-existing disabilities like me. I have often had to over-explain myself to people for being perceived as intense and too direct in my communication – which I find very normal – but have had to learn that these are not accepted in any ‘normal’ social setting.

Hare begins (and I wish she never stopped) dismantle the misconception that autism is only prevalent amongst white men. In doing so, she illustrates the many barriers it creates for anyone who is not white, cisheteromormative, disabled in any other way, a man and especially – neurodiverse in a palatable way to actually get diagnosed (if they want or need it), and receive any support. 

Hare asks that we proceed in our campaigning beyond the buzzwords and aesthetics of the neurodiversity campaign by understanding the architecture, function and power of language we use

This is useful for thinking about the next steps Hare hints at, which is refusing to adjust or ‘mask’ our behaviours just to fit into a  disableist society – not only because of what it takes away from neurodiverse  individuals and their communities but because of the hostility it normalises for them. Rightfully, the message here is that those who are neuroconformist, should meet the rest of us where we are.

Exploiting neurodivergence

In her final chapter, of the book describes how neurodiversity is framed as a ‘superpower’ to be exploited by neoliberalism. This exists directly in tandem with the shame the UK government lauds over disabled people trying (and often failing) to access the support they are entitled to through the welfare systems – rather than solving the problem of our disenfranchisment, as Chapman states, we recreate the same harmful neoliberalism under the guise of performative ‘neuro-inclusivity’.

Hare acknowledges that we have made some progress, but calls for more political urgency as we think about how to reorganise our societies, our cognitive functions and disability in these discussions within the wider neurodiversity campaign. She asks that we are mindful and we proceed in our campaigning beyond the buzzwords and aesthetics of the neurodiversity campaign by understanding the architecture, function and power of language we use, to root our work in the Care Manifesto proposed by the Care Collective in the absence of a well-funded, non-privatised health and social care system, and most importantly that we employ greater nuance in our understanding of autism and neurodiversity more generally. This understanding should be a continuous process, one where we all remain teachable, where we are able to learn and unlearn, re-negotiate everything we know, so autistic people and by extension neurodivergents can live their lives in a better world and be valued as they are.