‘I don’t think they understand the reality of autism’: The lived experiences of autistic adults in Japan

Most autism research has been conducted in Western settings, which means that we know little about the lived experiences of autistic adults across a wide range of sociocultural contexts and countries. This study is, to our knowledge, the first to examine the lived experiences of autistic Japanese adults, eliciting their experiences of growing up autistic from their time at elementary school to the time of interview. We used semi-structured interviews with seven autistic Japanese adults, who had been clinically diagnosed in their 20s and 30s. Using reflexive thematic analysis, we identified four themes, including (1) people feeling different and misunderstood, (2) the books, doctors or other autistic people enabling the journey towards diagnosis, (3) the many and mixed emotions that emanated from the diagnosis and (4) a strong desire to be accepted. All interviewees experienced significant hardship throughout their lives, including a lack of acceptance of their diagnosis from their families. While this took its toll on the interviewees' mental health, they desired to be understood by others and to address stigma. More efforts are needed to increase the knowledge, understanding and acceptance of autism in Japan through the lens of neurodiversity and with the input of the autistic community.Lay AbstractWe know more and more about what it's like to be autistic and autistic people's experiences at school and at work. But most studies are from Western cultures, especially the United Kingdom and the United States, which means we know little about what it's like to be autistic in other cultures, including East Asian cultures. In this study, for the first time, we investigated the life experiences from school to employment of Japanese autistic adults. We asked seven Japanese autistic adults, who had received their clinical diagnosis in their 20s and 30s, about their experiences from their own perspective. We found four major ideas or 'themes': (1) people feeling different and misunderstood, (2) the books, doctors or other autistic people enabling the journey towards diagnosis, (3) the many, mixed emotions that came from getting an autism diagnosis and (4) a strong desire to be accepted. All participants experienced bullying and felt different from others around them from an early age. Some participants were happy to receive their autism diagnosis, which made them understand themselves better, while others had mixed feelings - such as feeling hopeless because autism has no cure. Our findings are consistent with previous Western research. We also found some distinctive experiences from Japanese participants, who faced a significant amount of stigma, potentially because of negative attitudes towards autism/disability and Japanese social expectations and rules. Future research should focus on the needs of autistic people in Japan and work with them to increase understanding, awareness and acceptance of autism.