Is neurodevelopment diversity a disorder to be treated or an identity to be respected? ERC grantee Kristien Hens challenges stigma, exploring first-hand experiences for a richer, more nuanced understanding.
How did you become interested in neurodiversity?
Neurodiversity refers to the diverse ways in which people experience the world around them and challenges the perception of these differences as deficits. My fascination with neurodiversity and autism started during my PhD studies and increased over the years. For a philosopher like me, autism is very interesting because it's a very complex phenomenon. It prompts profound questions: is it a disability, as defined in the Diagnostic and Statistical Manual of Mental Disorders (DSM)? Or is it a unique way of being, a distinct behavioural pattern?
The diagnosis of Autism Spectrum Disorder (ASD) is based on behavioural assessment as there is no measurable biological alteration associated to it. The attribution of the autism label is based on what is observed. Genetic research over the past 20 years suggests that autism runs in families, but the exact genetic cause is yet to be determined. Maybe autism is a distinctive lens through which individuals experience the world, a valid and valuable perspective that does not need to be treated. People get diagnosed with autism when problems arise at school, at home or at work. But if they are in an environment where they can flourish, they may self-identify as autistic.
What is the focus of your ERC-funded project?
I am interested in the philosophy and ethics of neurodevelopmental diversity, and I am deeply convinced of the importance of first-person perspectives. Our research aims to understand how individuals with developmental diversities personally experience their situations, and to examine the interaction between their condition and their environment.
Our research involves interviews with teenagers and adults diagnosed with autism, Tourette syndrome or Attention Deficit Hyperactivity Disorder (ADHD). Through these conversations, we try to understand the challenges they encounter, and explore their views on the control of their behaviour. Specifically, we aim to understand how they perceive the nature of their diagnosis, whether they see their difficulties as being innate, or influenced by social and environmental factors, and the extent to which they see their challenges and opportunities as dynamic aspects of their biology and/or social context. In a collaborative effort to ensure inclusivity and authenticity, we have worked with researchers who themselves are autistic. Together, we codesigned the questionnaires to better resonate with the lived experiences of those we aim to understand.
Which approach did you use to interact with people with compromised communication skills?
One of my team members, Leni Van Goidsenhoven, used artistic methods, leveraging elements such as music and play, to communicate with individuals who may not be very verbal or are nonverbal. She organised workshops with small groups, actively participating in drawing or dancing alongside them. This artistic engagement, though very time-consuming compared to interviews, proved invaluable in engaging with participants. A significant achievement of the project is the development of new art-based techniques that facilitate the inclusion of people with complex communication needs in research. The research was the topic of an exhibition in 2021 at the Museum Dr. Guislain in Gent.
Building on this success, we are currently exploring and promoting alternative ways to engage those who are often marginalised in research. We are still at the beginning of this new path in empirical ethics, and in the next years, we will reflect further on art as a method that allows researchers to go beyond conventional approaches. We have a very limited understanding of people who cannot verbally express themselves. And the lack of speech does not mean that they can't communicate. As an ethicist, I continually emphasize the importance of involving these people in research, advocating for a broader and more inclusive understanding of communication that extends beyond verbal expression.
As your project concludes, what additional outcomes have you achieved?
Talking to people on the autistic spectrum has changed my own thinking about developmental conditions. These are complex phenomena, which requires a shift in approach, one that integrates the life trajectories of people, and their experiences. Over the last five years, we have delved into diverse facets, including the conceptualizations of developmental diversities, perceptions of disability in different geographical areas of the world, defining quality of life for people living with autism, exploring resilience, and more. Our efforts have laid the basis for a new field of investigation: experimental philosophy of medicine.
In terms of practical applications, our findings will help the design of more inclusive psychoeducational interventions. We have drafted recommendations specifically tailored for child psychiatrists grappling with dilemmas related to the diagnosis and treatment of neuro-atypical children. Simultaneously, we are in the process of developing a toolkit for parents who have recently received an autism diagnosis for their child that incorporated ideas from neurodiversity scholars and people with lived experience.
Thus, the impact of our work goes beyond shaping academic inquire to directly influencing practical strategies that enhance the well-being of neurodivergent individuals and their families.
Kristien Hens earned a PhD in Biomedical Sciences (bioethics) in 2010 at the KU Leuven on the ethics of using stored DNA samples from children for research. She earned a second PhD in Philosophy in 2018 at the University of Antwerp on the ethics and philosophy of autism. Her main interests are the ethics and philosophy of neurodiversity and the normative implications of concepts of biology. She studies the ethics of proteomics, microbiomics and epigenetics, and entanglement of health and environment. She has written several books, including Towards an Ethics of Autism (2021, Open Book Publishers) and Chance Encounters (2022, Open Book Publishers).