In 2010, when I was a graduate student, I received my first research grant and attended a conference organised by Autism Europe. As I listened to the lectures, sometimes with simultaneous translation from Italian to English, I learned that there is a need for early detection, early intervention, and the development of biomarkers for autistic people, although this direction is now changing.
I saw several Japanese researchers giving poster presentations in the hall, but no Europeans came to listen to the talks. I thought it was a conference for Europeans, and so ever since then, I did not attend overseas autism conferences. Ten years later, in 2020, Dr Sophie Sweden of the University of Birmingham kindly invited us to join her team to promote diversity and inclusion in autism research, through global collaboration as a Japanese researcher. At that moment, I felt that a door that had long been closed by Western researchers had been opened to Asian autistic people and researchers. It was very pleasant for me.
Most autism studies are based on WEIRD (White, educated, industrialised, rich, and democratic) countries, so diversity and inclusion are necessary. Is this true? If so, what is the barrier to participating in research in both autistic people and researchers from ethnic minority regions and countries? I would like to raise two structural problems based on my own experience.
The first is language. Some Western researchers pointed out that language differences can be a barrier. This is because the best tools developed by Western researchers in English cannot be used by minority researchers until they have been translated and validated. I felt that this was only half of the problem. When I was a postgraduate student, one of the things I learned in designing my research was not to use questionnaires made by Japanese researchers, regardless of their quality. This is because, during peer review, English-speaking people cannot read Japanese papers, so the research paper is rejected. I don’t have any experience of verifying whether a paper is really rejected for publication, but you can get a sense of the reality by checking whether papers written in non-English languages are cited in papers by non-English speaking researchers.
Furthermore, much of the research that is closer to the practical field, such as education and support, is published in Japanese. I have heard that one of the reasons for this is to reach Japanese people in the field, such as school teachers, who cannot read English. For instance, when I search for research text by Google scholar related to autism, I found 1,150,000 papers for English and 56,500 papers for Japanese. If there is a meaningful finding from a unique perspective in these Japanese papers, it is unlikely that English-speaking researchers will have access to that information. Language is not a one-way problem; it is a two-way problem.
The second is the review and publication process. In the case of autism research, there is the suggestion that more research should have a clear benefit to the autistic community. I absolutely agree with it. However, if I look up the country of the institution to which the editorial board of representative articles (Autism Research, Molecular Autism, Autism, and Journal of Autism and Developmental disorder) belonged, I found that over 60% were in the US and over 20% in Europe. How can a journal, where more than 80% of the editorial board are researchers affiliated to Western institutions, be judged to match the social needs of autistic people in a minority country? For example, there may still be unique social problems that cannot be solved in a minority country, which cannot resolve by the previous study. How can a majority of researchers judge the value of a paper seemingly resolved topic that incorporates specific problems that only a minority of autistic people and researchers can perceive? The issue of diversity and inclusion in autism research is not only an issue for the participants but also the people evaluating the value of research.
Diversity and inclusion in research is a very important challenge. I hope that this will lead to initiatives to redesign the overall research system to include the voices from diverse cultures and people, rather than simply Western-led international comparative research and the spreading of Western values.
Yuko Okamoto, PhD is an assistant professor at Waseda University. She studies cognition and brain development in autism and is part of an international collaborative research team on autism.