N. B.: This material was originally published on the University of Turku blog on October 16th, 2026. The text below has been updated to fix several grammatical errors and to clarify that the prevalence rate refers to the diagnosis rate, i.e., how often people are being officially diagnosed with autism spectrum condition.
Imagine going to the hospital, getting a life-altering diagnosis of a lifelong condition, only to be told that there are no official institutions that can provide care for you when you need it. This is what falling off the so-called service cliff1 is, and this is what happens to a lot of autistic adults around the world once they come of age or find out about their status in adulthood. I am one of these adults.
This instance of coming to know my neurotype later in life and revisiting how it shaped my day-to-day experiences made me reassess some of my prior knowledge and assumptions about autism. Namely, the fact that some disabling conditions do not come from an impediment or deficiency within an individual that needs to be fixed (medical model of disability). Instead, they come from socio-political structures that discriminate and marginalize certain conditions as “abnormal” (social model of disability2).
But most importantly, it posed an important question that guides my research: how and where can autistic adults get care and support, when none is available from the state or hospitals? And what does Japan have to do with in the context of Finland?
Japan is one of the countries where three distinct trends intersect. First, it has one of the highest autism prevalence (diagnosis) rates (up to 5%3) in the world compared to 1-1.2% in Finland4. Second, the pressure for conformity in Japan is high, and tolerance for unusual behaviours is low5. Therefore, social ostracism and financial instability are always looming on the horizon for autistic people6. While this situation is not unique to Japan and can be observed in Finland as well, the extent of is nowhere near Japan’s. Third, in Japan, disability status and the following care provision is ruled not by the medical or social model of disability, but by administrative categories7, which are a medico-political notion specific to Japan and very different from social welfare provision for disabled people in Finland.
This landscape of complicated interplay between the nature of autism, the unmet needs of autistic adults, tight social rules, and medico-political systems that guide care (un)availability in Japan is extremely hard to navigate. However, it has also fostered many creative ways in which families, friends, communities, non-governmental and non-profit organisations provide care to autistic adults. Yet, they are invisible if you only look at official social policies and medical protocols.
Therefore, in my research, I take a deep dive into the everyday practices of care providers working with autistic adults in Japan. I map out these practices, systematize them, and then compare and contrast them to the practices of Finland. By doing so it is possible to uncover what care providers working with autistic adults in both countries can learn from each other’s approaches and experiences. These findings will help to diversify the toolbox of care provision practices in both countries.
Bibliography:
1. Fairbank, Rachel. “How to Navigate Adulthood on the Autism Spectrum.” American Psychological Association, November 1, 2023. https://www.apa.org/monitor/2023/11/adults-autism-spectrum.
2. Oliver, Michael. The Politics of Disablement. Macmillan, 1991.
3. “Perustietoa Autismista.” Autismiliitto. https://autismiliitto.fi/autismi/perustietoa-autismista/.
4. Sasayama, Daimei, Rie Kuge, Yuki Toibana, and Hideo Honda. “Trends in Autism Spectrum Disorder Diagnoses in Japan, 2009 to 2019.” JAMA Network Open, May 3, 2021. https://pmc.ncbi.nlm.nih.gov/articles/PMC8097493/.
5. Sekizaki, Hironori. “Social Norms Reflected in Japanese Kenashi (Blaming).” Asian Journal of Language, Literature and Culture Studies, August 12, 2018, 1–16. https://doi.org/0.9734/AJL2C/2018/43404.
6. Nakajima, Takanobu. Shouhaisha no keizaigaku (障害者の経済学, Economics of people with disabilities). Tokyo: Toyokeizaishinposha, 2020.
7. Shinomiya, Sawako. “The role of administrative categories in the globalisation of a psychiatric concept: Case studies of autism in Japan.” Social science & medicine (1982) vol. 357 (2024): 117223. doi:10.1016/j.socscimed.2024.117223
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Viktoriya Kuzina is a doctoral researcher at the Centre for East Asian Studies at the University of Turku, Finland. Her interests include neurodiversity, critical autism studies, critical disability studies (crip studies), and care work, especially in contemporary Japan. She holds a Master of Social Sciences in East Asian Studies from the University of Turku, Finland; and a Master of Linguistics in Japanese language from the Oles Honchar Dnipro National University, Ukraine.
