A recent academic study reveals unique cultural influences and common challenges.
Introduction
Autism research has largely been concentrated in Western countries, leaving a significant gap in understanding how autistic individuals in East Asian cultures experience their lives.
A recent study by N Harada, E Pellicano and more, focusing on the life experiences of late-diagnosed autistic adults in Japan sheds light on this issue, revealing unique cultural influences and common challenges faced by autistic individuals worldwide.
By conducting semi-structured interviews with seven Japanese adults diagnosed with autism in their twenties and thirties, researchers gained insights into their experiences from childhood to adulthood.
Key themes that emerged include: feeling different and misunderstood, the impact of the diagnosis, and a strong desire for acceptance.
Key themes that emerged include: feeling different and misunderstood, the impact of the diagnosis, and a strong desire for acceptance. All participants faced significant challenges, such as bullying at school, workplace discri-mination, and lack of acceptance from family members. They expressed a strong need for understanding and a desire to reduce the stigma surrounding autism.
There is a growing call to take the testimonies of autistic individuals seriously in research. For a long time, core features of autism, such as atypical eye contact and echolalia, have been considered signs of reduced social motivation. However, autistic people often report that these behaviors do not necessarily reflect their social interest. Avoiding eye contact, for instance, helps autistic individuals focus and regulate their emotions. Additionally, much conventional research has been conducted without input from autistic people, leading to findings that are often irrelevant to their daily lives.
Feel misunderstood, the impact of the diagnosis and a strong desire for acceptance
Feeling Different and Misunderstood
Participants felt different from a young age, often confirmed by their surroundings. Many were bullied because of their differences, sometimes leading to school changes or isolation.
Participants were aware of their differences from an early age. Yusuke often wished to be a ‘normal’ child. Haruko felt similarly, saying, “When I was small, I was aware that I was different from everyone around me.”
This feeling was externally confirmed by others’ treatment. Yusuke recalled how classmates saw him as an eccentric. “They treated me as an eccentric,” he said, leading to feelings of isolation.
All participants reported varying degrees of bullying. Yusuke, for example, faced severe bullying, being locked on the balcony, beaten, and verbally abused. This led him to change schools in fourth grade.
Hitomi struggled around age 15, feeling different but having her concerns dismissed due to good grades. “They thought it was a luxury problem because my grades were good,” she said.
Daiki had trouble forming and maintaining friendships at university, facing issues in study and mountain climbing groups, leading to frequent changes due to interpersonal conflicts.
For many, the realization of potential autism began with mental health struggles
The Impact of the Diagnosis
Many participants sought help for mental health issues before receiving their diagnosis. Some began their search after reading books or through interactions on social media.
For many, the realization of potential autism began with mental health struggles. Daiki described experiencing severe symptoms that led him to seek psychiatric help, resulting in an ASD and ADHD diagnosis. Yusuke similarly sought help after severe mental health issues and a stay in a psychiatric ward.
Some participants began their search through self-research and social media. Haruko found a group on X (formerly Twitter) and attended a meeting that led her to seek a diagnosis. Hitomi discovered an online forum that resonated with her feelings, leading her to seek a formal diagnosis.
The diagnosis often confirmed suspicions and provided a framework for understanding past experiences. Daiki found validation for his suspicions, while Haruko felt relief and understanding. Hitomi also found comfort in the diagnosis, recognizing her experiences in those of others.
Many participants kept their diagnosis a secret to avoid negative consequences.
Strong Desire for Acceptance
Participants often felt misunderstood by their family and friends. There was a general fear of stigmatization, leading many participants to choose to hide their diagnosis.
Many participants kept their diagnosis a secret to avoid negative consequences. Mikako faced resistance from her family, while Hitomi feared changing her friends’ perceptions.
Some participants faced negative consequences after sharing their diagnosis. Yusuke lost friendships, and Ichiro noted that many people hide their diagnosis to avoid similar outcomes.
Participants were often discouraged from being open about their diagnosis, especially at work. Daiki was advised not to disclose his autism to avoid negative reactions.
Hiding their diagnosis took a toll on participants’ mental health. Constantly masking their traits led to stress and feelings of isolation. Hitomi reported multiple burnouts due to trying to meet others’ expectations.
My critical reflection
As an autistic adult living in Europe, I find this study both illuminating and thought-provoking. The experiences of autistic individuals in Japan resonate with many challenges faced by autistic people globally, but there are also distinct cultural nuances that merit attention.
The study highlights themes that are strikingly similar to those experienced by autistic individuals in Europe. Feelings of being different and misunderstood, struggles with societal expectations, and mixed emotions following a diagnosis are common to many autistic Europeans. These shared experiences underscore the pervasive nature of autism-related challenges across different cultures.
The exploration of Japanese cultural norms, particularly the emphasis on conformity and harmonious relationships, exacerbates difficulties for autistic individuals. In contrast, European societies often place a higher value on individuality and diversity. This cultural difference significantly impacts how autism is perceived and managed. The pressure to conform in Japan seems more intense than in many parts of Europe, where there is some recognition of neurodiversity and the need for inclusion.
The lack of accommodations and rigid expectations in Japanese workplaces are troubling and lead to significant stress and mental health issues. While Europe is not perfect, there are generally more legal protections and initiatives aimed at workplace inclusion. For example, the European Union’s directives on disability rights encourage reasonable accommodations and anti-discrimination measures, though effectiveness varies across countries.
The study points to significant stigma surrounding autism in Japan, leading many individuals to conceal their diagnosis. This is an area where Europe has made some progress, though stigma still exists. Public awareness campaigns and advocacy by autistic self-advocates have helped reduce stigma and promote acceptance, but the fear of being misunderstood or discriminated against persists.
The impact of societal attitudes and workplace environments on mental health is a critical issue. High levels of stress, anxiety, and burnout reported by Japanese participants are also prevalent among autistic people in Europe. This highlights a universal need for better mental health support tailored to the unique needs of autistic individuals. While there is increasing recognition of this in Europe, gaps remain in service provision and quality.
Recommendations and Future Directions
The study’s recommendations for increasing public awareness, providing better support during transitions, and creating more inclusive workplaces are relevant and align with ongoing efforts in Europe. Continuous improvement and sharing of best practices across borders are essential. Collaboration between autistic communities in different countries can foster better understanding and effective strategies.
Conclusion
The study provides valuable insights into the experiences of late-diagnosed autistic adults in Japan, highlighting significant cultural influences. As an autistic adult in Europe, I see many parallels between the challenges faced by autistic individuals in Japan and those in Europe. However, the cultural context adds a unique dimension crucial for understanding and addressing these challenges. By learning from each other and fostering global dialogue on autism, we can work towards a more inclusive and supportive world for all autistic individuals.
The European Autist 