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

Monthly academist Prize 3rd adopted

Kana Grace

University College London、Honorary Postdoctoral Research Fellow

Challenge period

2023-09-05 - 2024-08-30

Final progress report

Thu, 28 Mar 2024 10:53:11 +0900

Progresses

31 times

Supporters

5 people

Elapsed time

Tue, 05 Sep 2023 10:00:00 +0900

Profile

Kana Grace

Hello! My name is Kana Grace. I am an Honorary Research Fellow at University College London, UCL where I completed my PhD. Prior to my doctoral study, I completed my undergraduate and graduate degrees in America and England. My research focuses on the wellbeing of neurodivergent people. In addition to research, I run a non-profit startup called Valtameri for support and advocacy for neurodivergent people.

I am multiply-neurodivergent myself, and I am passionate about co-producing my research and advocacy work with other neurodivergent people. My research/advocacy has previously been featured in some major media such as BBC and Spectrum.

I am striving for the world that embraces the diversity in human minds.

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.

Recommender Comment

Dr Luke Beardon
Senior Lecturer in Autism, Sheffiled Hallam University

As a Senior Lecturer in Autism I was fortunate not only to supervise Kana on the Post Graduate Certificate in Autism but also, some years later, to be the external examiner for her excellent PhD thesis on Autism and Loneliness. I have always been struck by Kana’s unwavering determination to positively influence the autistic community in any way that is available to her. Over the years I have worked alongside many individuals, some of whom havereally struck me as integral to the ongoing autism movement; I would regard Kana as one of those people.

Dr Vicki Gibbs
Head of Research, Autism Spectrum Australia; Adjunct Associate Lecturer, University of Sydney

Autistic people are disproportionately disadvantaged across their lifetimes. They are more likely to experience bullying and victimisation, are less likely to be employed, and have higher rates of anxiety, depression and suicide and die younger compared to non-autistic people. Many of these disadvantages are not directly related to their autistic traits. Rather they arise from the widespread stigma and discrimination that is associated with autism in the wider society which can lead them to be excluded and isolated. Kana’s PhD exploring loneliness among autistic people shed light on this important topic and highlightedthe need for further research in this area and concerted efforts to increase awareness of autism and make the world more “autism friendly”. I am excited to hear about Kana’s plans to be a driving force for positive change in Japan and look forward to following her progress.

Dr Shinichiro Kumagaya
Associate Professor, Research Center for Advanced Science and Technology, University of Tokyo

To achieve an inclusive society, it is necessary to transform the social environment into one that guarantees access for diverse individuals, taking the perspective of a social model of disability that recognizes design bias towards certain groups of people. Additionally, based on the principle of "Nothing About Us, Without Us," the process of transformation needs to be led by the minority themselves. Kana’s work, grounded in the social model, is promising as the neurodivergent-led research/activity aiming at
mproving the well-being of neurodivergent people.

Nova Matthias
BA, MA, PGCert TADLHE, Specialist university mentor and tutor in Autism, Mental Health and Specific Learning Difficulties.

It is vitally important that we have a better understanding of how neurodivergent people experience the world and the richness and diversity that they bring. A key element of this is recognising the particular challenges they face and how they can be supported to ensure they can participate fully in society and flourish. Kana has a longstanding commitment to work in this area in order to improve the lives of autistic and neurodivergent people and their families and to give them a voice. Her research on loneliness in autistic people in the UK was significant in that it both consulted autistic people about their experiences and provided practical recommendations of what could be done to support them. Her planned work is important in trying to expand this awareness and understanding in Japan and to understand further how neurodivergence intersects with other physical and cognitive conditions to get an insight of how neurodivergent people can be better supported.

Project timeline

Date Plans
2023, 9 Launching this academist project
2023, 9 Launching the research on suicidality in AA
2023, 9 Launching the work with UCL Co- Production Collective to effectively communicate their work on co- production
2023, 9 Launching meetings with Embracing Complexity
2023, 10 Talk on Zoom
2023, 10 Ehlers-Danlos international conference
2023, 10 Submitting a paper on my qualitative study within my PhD
2023, 11 Talk on Zoom
2023, 12 In-person talk at Okinawa Institute of Science and Technology (OIST)
2023, 12 Talk on Zoom
2023, 12 Finishing up the research on suicidality in AA
2024, 1 Talk on Zoom
2024, 2 Talk on Zoom
2024, 3 In-person talk at Okinawa Institute of Science and Technology (OIST)
2024, 3 Talk on Zoom
2024, 4 Talk on Zoom
2024, 5 Applying to Postdoc fellowship?
2024, 7 Ehlers-Danlos international conference
2024, 12 Publishing the paper on a study to adapt a measure to assess loneliness in autistic adults

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