Making the world a better place for neurodivergent people and their families

What do you want to achieve through your research?

My ultimate goal in research is to make the world a better place for neurodivergent (henceforth ND) people and their families.

ND people are the neurominority, and neurodivergence encompasses neurodevelopmental differences such as autism, ADHD, Tourette’s, and dyspraxia. ND people often have more than one diagnosis (i.e., multiply-ND), and I am multiply-ND myself. Because of the hidden nature of neurodivergence, ND people are prone to be stigmatized.

For example, autistic people are likely to experience negative social experiences such as exclusion and bullying, which could lead to loneliness.

I am aiming for the world where ND people and their families feel accepted, understood, and supported. To achieve this, I value listening to ND people to guide research and conducting research that has a positive impact on ND people’s lives. I want my research to provide an evidence-base to the experiences of ND people and their challenges and to improve the understanding and acceptance of ND people.

What kind of process are you trying to achieve?

In my PhD research, I investigated loneliness in autistic adults (AA) to further our current understanding on the topic.

Existing measures of loneliness were designed for the general population and not specifically for AA. Using existing loneliness measures that are not validated in AA might be problematic for several reasons. For example, some frequently-used loneliness measures ask about friendships, but AA may understand friendship differently from non-AA. Also, at the time of my doctoral research, there had only been one study that exclusively explored the experiences of loneliness in AA.

I used online surveys to examine the appropriateness of the existing loneliness measures for AA and to explore the first-hand experiences of loneliness in AA.

Many autistic adults do desire social relationships with others but experience multiple barriers to build such relationships. Such barriers include sensory environments (e.g., social situations being sensory overwhelming), a perceived lack of societal understanding and acceptance of autism, and a perceived lack of shared understanding and experiences (i.e., not being understood and being misunderstood). The uniqueness of loneliness in autistic people lies in the internal conflict (dilemma) between their desire for connections and difficulties in realizing their desire.

As part of my PhD research findings, I found the need to pay close attention to the experiences of loneliness in AA. Future studies could use Otter/Parrot AIs which transcribe speech to make it more accessible for those who have difficulty understanding through conversation alone (e.g., due to dyslexia) to participate in research.

Moreover, a lack of understanding of ND people is a serious issue that is linked to loneliness and/or their negative experiences with support/services. I am actively giving research presentations and talks to improve the understanding of ND people.

What research topics are you currently working on?

Currently, I am working on multiple research topics concerning the well-being of ND people.

As a research partner with the largest autism charity in Australia (Aspect), I am working on research to adapt a loneliness measure for autistic adults (AA) with stakeholders (e.g., autistic adults) based on my PhD research findings, and to evaluate its validity and reliability using statistical tests (e.g., factor analysis, correlation analysis).

I am also involved in other research projects as a research collaborator. For example, I am currently co-designing research on suicide in AA. Furthermore, I act as a member of the steering group in the ‘Embracing Complexity’ project in the UK which is a coalition of more than 60 organizations and aims to improve the societal understanding and inclusivity of ND people.

Additionally, many ND people experience physical health issues (e.g., pain, gut health issues) which I emphasize as an ND person and professional working with ND people. Thus, I am now expanding my work on physical health issues among ND people (e.g., connective tissue’s issues).

Why are you challenging Academist?

As I had learned much about neurodivergent minds in the UK, I was appalled by the lack of understanding and support for ND people in Japan. The biggest reason why I joined the Academist Prize is because I want to share the cutting-edge neuroderversity-affirmative research and its evidence-based knowledge on ND minds in the Japanese society. This is hugely important to reduce the stigma towards ND people and to make the society a better place for them and their families. Through this project, I aim to share my research and knowledge with the wider Japanese society, and eventually improve the understanding of ND people in Japan.

As an unpaid honorary research fellow, there is a limitation to my research activities. I would like to use the financial support from Academist mainly for sharing evidence-based knowledge with the wider public. For example, I will be able to spend time doing regular lectures/talks for a variety of audiences online and in-person, and sharing free educational videos on Youtube. I am planning to provide English-Japanese simultaneous interpretation at lectures where I invite ND activists and researchers from English-speaking countries. Once the financial support reaches ￥20,100, I will subscribe to the Zoom Pro (￥20,100/year) to regularly hold talks on Zoom.

*Academist Prize is the scheme to maximize the social impact of this crowdfunding project. For my advocacy and research work, I have been awarded the 1st place to join their 2023-24 cohort.

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