Providing improved educational opportunities for children with autism
Lucie Ducarre has researched the right to education for autistic children within the framework of international and European law. She hopes her PhD project will contribute to a better learning environment and experience for children with autism.
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– In brief, can you describe what your PhD project is about?
– My thesis focuses on the right to education of autistic children in international law (especially the UN Convention on the Rights of the Child and the UN Convention on the Rights of Persons with Disabilities) and European law (especially the European Convention on Human Rights and the European Social Charter). It aims at providing a neurodiverse and rights-based interpretation of this right.
– Briefly explained, a neurodiverse interpretation requires considering autistic children’s social, communicative, sensorial and cognitive functioning as different, but not inferior to the normative functioning. A rights-based interpretation requires adopting an interpretation that is supportive of and supported by other human rights, including the principle of the child best interests and the right to participation.
– What have you discovered through your project?
– My research is conceptual rather than empirical so there were no findings per se, but I think what transpired from the early stages of the research was that the legal notion of quality education was still underdeveloped and under-researched both in general and with regards to autistic or neurodivergent populations in particular. On the other hand, the legal notion of inclusive education had been more discussed but remained mostly anchored in a neurocentric approach and in questionable legal and conceptual grounds.
– Why is this topic important to research?
– Autistic children are regularly reported as one of the populations with the worst educational experience and outcomes around the world. Even though this partly stems from challenges at the implementation level (including a lack of required reasonable accommodations), my thesis contends that there are also conceptual issues at stake. It is hoped that developing an interpretation more respectful of neurodiversity and children’s rights can, in turn, help address the poor educational situation and denial of rights faced by autistic children.
– In addition to the autistic population, the thesis’ reflections and some of the potential solutions it proposes (e.g., diversification of educational offers and settings, individualized and neurodiverse approach to quality education) can be relevant for other children who, for whatever reason, are struggling to fully benefit from their right to education within the normative developmental and social model that schools currently rely on.
– How did you end up doing your PhD on this particular topic?
– I have previous education and experience within the field of children’s rights and with autistic children. When UiB’s Law faculty published a call for PhD applications, I had been wanting to research the lack of neurodiversity in law and legal practice for a while, but I was not sure whether or not it would be welcomed by the field, especially at a PhD level.
– Then I heard about, and read, the PhD thesis of Jenny Krutzinna (The Ethics of Enhancement of Intellectual Abilities in Children: A Risk of Creating ‘Superhuman’ Disabled?) who addresses, among many other things, questions of normalcy and neurodiversity, and which was written in the fields of law and ethics. This gave me the courage I needed to apply with a project on neurodiversity in children’s rights.
– What has been the most rewarding part about the work process?
– I think that the most rewarding has been to have my articles accepted for publication and some of the feedback I got on them from reviewers or editors.
– What have been the biggest challenges for you?
– To me the biggest challenge was to define and limit the scope of my project. I spent several months on this at the beginning of my contract in order to arrive to a project that was doable in the limited time I had.
– The other main difficulty was how to delimit my daily work in general. I am a bit of a ‘precrastinator’, meaning I struggle to rest until I feel like I have completed my tasks. The problem with a PhD is that you cannot complete a 3-years task in a few days or weeks, and it can be hard to subdivide it into smaller, more manageable, tasks. I remember feeling like there was always so much more that I could do and therefore rarely feeling satisfied by the work I had actually done this day, week, or month.
– Did you ever regret starting?
– I don’t think I have regretted starting, but I have thought many times that I would not manage to finish. I think what helped me was first to know that this was relatively common within PhD candidates, and to find an approach to my thesis that was more manageable for me (including choosing an article-based format). The mid-term review also helped me feel more confident about the relevance and the progress of my project.
– I think it is also important to remember that your PhD is not something you are stuck with, that it does not define your worth, and that even in the worst-case scenario, like if you quit or if you fail, the world will keep on turning and your life will not be over. I know for me realising that it would also be okay to quit if it came to that made me feel less pressured and guilty and actually helped me find a better approach to my job.
– How have you been able to balance work and leisure during your studies?
– I had a very flexible work schedule since I was working on an individual project, so logistically it made it easier to fit in other constraints or priorities.
– On the other hand, it was difficult to mentally disconnect from work in the evenings or weekends both because I didn’t get the feeling of having finished my job since it is a very long-term process, and because, maybe especially for conceptual research, it is hard not to think about it even outside of working hours. Longer holidays were easier for me to enjoy because I could press pause and take a real break from my project.
– Now that you have crossed the finish line, what are your plans?
– I am currently working on the DIMENSIONS project, led by professor Linda Grönig, where I research how autism is perceived in criminal justice and especially with regards to criminal accountability and risk assessment. In the future, I hope to continue doing research on human/children’s rights, autism and neurodiversity, or related questions.
– Would you recommend others to pursue a PhD here at University of Bergen?
– Yes, if you want to do a PhD in Law, I can definitely recommend the law faculty and UiB as a very positive and supportive work environment.