“Normalizing autism – the challenge of medical research at the light of neurodiversity” by Rita Serra

Text written for iMM Newsletter from Faculdade de Medicina da Universidade de Lisboa. Besides being a PhD in biology and a researcher in Centro de Estudos Sociais of Universidade de Coimbra, Rita is autistic and part of APVA – Associação Portuguesa Voz do Autista. Read below a personal intake on the definition of normal and the future of “autistic medicine”. 

Not that time ago, medicine understood menstruation as a curse. It took centuries to accept women’s bodies as part of the normal human experience. This step was absolutely essential to develop women’s health. I offer here a similar argument for autistic bodies.
The struggle to normalize bodies follows two opposite trends: one results from the activism of monsters – all those excluded from the definition of health by nature, that seek to expand what is acceptable to our species; the other results from all those that seek to reduce such acceptation, creating a narrowed normal and a cure for deviations. The frontier between normal and pathological opens the space for clinical research. Nevertheless, the afflictions of the body are not always visible from the outside – an external point of view. Although the body speaks to doctors able to understand its language, the subjective experience of wellbeing is accessible only through the living embodied experience.

As I write these words, autistic advocates, together with clinical professionals, some of which are diagnosed as autistic, are working to redefine these boundaries at the light of the neurodiversity paradigm [1]. Neurological diversity is not the problem to be cured. As all bodies, autistic ones can suffer from afflictions that are being defined by autistics themselves: sleeping issues, inertia, transitions between activity and rest, among others. Clinical research can and should conduct inquiries into the afflictions prioritized by autistics, that can surely improve the lives of autistic people and their families. Additionally, clinical research, and neurosciences in particular, can help us to understand better the differences that trouble communication between autistic and non-autistic people at the light of the double empathy problem. Such is essential for true collaborations to emerge between different minds.

The acceptance of diversity in neurological bodies should have an effect on researchers as well. As research is an embodied practice, we should oppose to an “unmarked normal” vs. an increasing list of “special groups”. By expanding normal, one should, eventually, abolish it, recognizing the diversity of cognitions that must be supported to flourish, its own flaws and pitfalls. This cannot be done by constantly comparing normal and abnormal bodies. Methodological challenges must be overcome to avoid “blaming the fish for not having wings, and blaming the birds for not breathing under water”.

One of the ways of responding to these methodological problems is by including autistic people in research as participants, not only as subjects. Mixed teams of autistic and non-autistic researchers are essential for the progress of autistic medicine. This is already in progress, although it will take time. The diagnostic is certainty a starting point for such medicine to emerge. Supporting autistic professionals is absolutely essential, as well as overcoming stereotypes of autistic doctor heroes. Maybe we can finally recognize that doctors are human as well, in need of prevention of burnout, job security, nurturing and accommodating environments as we all are.

[1] Pellicano, E., & den Houting, J. (2022). Annual Research Review: Shifting from ‘normal science’to neurodiversity in autism science. Journal of Child Psychology and Psychiatry, 63(4), 381-396.