Episode 220: Autistic-led autism research – with Dr. Kana Grace

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

Carolyn Kiel: On today’s episode, I’m speaking with Dr. Kana Grace, a research psychologist, advocate, specialist mentor, and educator specializing in the mental and physical health of neurodivergent people. Currently, Kana is an honorary research fellow at the Center for Research in Autism and Education at the Institute of Education, University College London, where she completed her PhD.

Kana has lived experiences with autism, ADHD, dyslexia, Tourette syndrome, dyspraxia, hypermobility Ehlers Danlos syndrome, postural orthostatic tachycardia syndrome, or POTS, and mast cell activation syndrome, or MCAS. She founded Valtameri, which means “ocean” in Finnish, to advocate for and support neurodivergent people and their families based in Okinawa, Japan.

Through Valtameri, she offers one on one support for neurodivergent people of all ages. She also gives talks and public lectures to deepen the understanding of neurodivergence in Okinawa, Japan, and all over the world. Fluent in both English and Japanese, Kana bridges cultures in her extensive work. Kana, welcome to the podcast.

Kana Grace: Thank you so much for welcoming me, Carolyn.

Carolyn Kiel: I’m really excited to talk with you about your experience as a researcher and your, your lived experience with multiple neurodivergencies. So to start out, how did you discover that you’re neurodivergent?

Kana Grace: Yeah, so my my story of discovering that I was neurodivergent really started from discovering that I was autistic.

So it all started from seeing a school counselor in my second year in my university here in Japan. And then, she recommended me to see a psychiatrist. So I went to see him, and he diagnosed me with several mental health conditions. And so I thought I was mentally ill. And then I took a break from the university and I eventually quit the university.

But I really wanted to be someone like a school counselor I saw in the university. So I asked her, how did she study to become a counselor? And she said, “I went to Columbia University Teachers College in New York.” So I was like, Oh, I’m going to go there and just study counseling psychology and to be just like her helping other students struggling through university life and life in general.

So I decided to transfer to another university, but not Columbia directly, but I transferred to Northeastern University in Boston. And then, I, yeah, I actually got admitted to Columbia University Teachers College for Masters in Mental Health Counseling. But while I was in Boston, it’s really Boston and New York is very close. It’s just a bus ride from each other. So I went to visit New York, New York City, and I discovered it’s too huge. I couldn’t cope with the atmosphere there. I really liked the campus itself, but outside of it is really Manhattan. So I decided to stay in Boston and went to Boston College.

And during that time, I heard from my mom about one autistic woman. So my mom was at a lecture by her, and she talked about, that autistic woman talked about her experiences. And her experiences were very similar to mine, so my mom called me on the phone. She was in Japan, I was in Boston, so she called me and said, Look, her experiences were very similar to yours, and maybe we should look into autism or Asperger’s Syndrome, which was a term people used a lot back then. So that was the start of my story of autism and I got a diagnosis of autism in 2017 during my master’s at Boston College, but it took actually more than 10 clinicians in total to get set.

And after that, I, I started my PhD and I found my hyperactivity, restlessness, and not being able to focus, and not being able to read. That’s always been an issue for me in my life, my whole life, but during my PhD doing research, that became a huge program. And I went to see a psychiatrist to see if I have ADHD, and if so, I wanted to see if some medications could work for me. So I went to see a psychiatrist and I got a diagnosis of ADHD, dyslexia and Tourette.

And then later, because I was seeing so many, so many various, doctors for various symptoms throughout my body, like headaches, fainting for no reasons, and stomach aches, et cetera, et cetera, but I didn’t get any answers for it. But then I remembered so many people I encountered in the neurodivergent community told me about hypermobile Ehlers Danlos syndrome. I started to search the term and I started to see a lot of common traits that I have with that diagnosis. And I went through a diagnostic process this year and I discovered about symptomatic hypermobility and other related issues, like POTS.

Carolyn Kiel: Wow. And so your discovery really didn’t start until you were in university. So you went through your whole childhood sort of, you know, not knowing you were neurodivergent, but but still having those experiences. Looking back, were there things that you kind of look back on, on growing up and saying like, Oh, yeah, that was something that was a challenge for me that I didn’t understand. But now, now it makes more sense?

Kana Grace: Yeah, there were so many things. Looking back, there were so many funny stories that I, I thought that were normal, but that wasn’t. Because everyone experienced their own things and they think that’s normal because we don’t know what other people are experiencing. So, for example, I always had severe headache after school, and I thought that was normal, but that wasn’t. And later I discovered that a lot of autistic people seem to have that stress, nervous headache after being surrounded by a lot of people.

And I had very severe asthma. I nearly died several times when I was a child. And so I went to the hospital so, so many times. I spent so many hours in the hospital when I was younger. But that asthma is actually related to the MCAS or hypermobility and it’s all related. So I’m starting to discover that there is a link to everything.

So it’s very interesting process.

Carolyn Kiel: Yeah. I found that a lot of people who are neurodivergent, it’s usually just not one, you know, one, one neurotype. They usually have multiple, multiple neurotypes or multiple experiences. Like autism and ADHD occur a lot together along with a more physical, conditions like HEDS and MCAS and POTS are, as you said, they, they often co occur I think for reasons that we don’t quite understand, but that is a somewhat common experience.

Wow. Wow. So you, you’ve been through university, you’ve gotten your PhD. How did you become interested in conducting research specifically that focuses on autistic adults?

Kana Grace: Yeah. So the interest in autism and autistic adults actually came from my diagnostic process itself and also from my lived experiences. And my PhD research specifically focused on loneliness in autistic adults. And that was because I was interested in social connection, social connectedness of people. And I felt that there is such a misunderstanding that autistic people don’t mind being alone, don’t mind being lonely or don’t even experience loneliness because they like to be alone. But as an autistic person, I felt, well, that’s not true. Because people don’t understand us, we feel lonely. But, I felt we need some scientific backup to help our lived experience be heard. So I decided to research on this specific topic, loneliness in autistic adults.

Carolyn Kiel: And what have been some of your most meaningful findings out of that research or, or research from other topics that you may have done as well?

Kana Grace: Yeah. So from, from my PhD on loneliness in autistic adults, one of the meaningful findings was that a lack of social understanding and acceptance of autism underpins loneliness in autistic adults. And another thing was the loneliness in autistic adult centers around the internal conflict dilemma between wanting to connect and finding it difficult to do so. So we as autistic people knew it already before I conducted the research, but presenting that scientific evidence is really powerful to make people believe our experiences.

And, and from the same study, same qualitative studies that I did with 203 autistic adults, I, based on the findings, I developed a paradoxical loneliness loop model to explain loneliness in autistic adults. So that’s basically a very simple explanation about loneliness. So it starts from having a desire for connection and still have barriers to have those connections. And finding social interaction exhausting, and exhaustion itself becomes a barrier and we avoid social interactions and then we feel lonely and therefore we need social connection. So it’s a cycle that we can’t get out of. So I called it paradoxical loneliness loop.

There is a hope that we have several ways that Autistic people tend to make meaningful relationships like people with similar interests or similar hobbies, sometimes with other autistic people or, not just with humans, but also with animals or nature or specific one person, sometimes like a parent or partner.

Carolyn Kiel: Yeah. There’s all different ways to make those connections. And I don’t know if you looked at this in your research, but did you have any findings of if autistic people connect better or more easily with other autistic people? Does that make a difference or does it really just depend on shared interests and other factors?

Kana Grace: Yeah, I didn’t specifically explore this topic, but my research definitely showed that similar interests, similar people, like minded people, tend to make meaningful relationships with each other, so that included autistic, other autistic people, autistic peer group.

But I think your question is actually related to double empathy problem that people call in academia. It’s not that autistic people lack empathy, but communication is always a two way process. So we autistic people tend to misunderstand, may misunderstand non-autistic people, but non-autistic people also may misunderstand us. And vice versa. So, a lot of research has shown, a lot of research actually by autistic researchers have shown that autistic/autistic relationships, interactions, seem to work better than autistic/non-autistic relationships.

Carolyn Kiel: Yeah, that that is really interesting how that that comes through. And yeah, the double empathy issue is definitely something that I’ve been learning about more recently as something that really plays a role. And especially it plays a role in sort of de-pathologizing the, the views of autistic people and the stereotypes about, you know, quote unquote problems with social interactions, because a lot of it is just double empathy in that often we socialize differently, and sometimes those challenges disappear when we’re with other autistic people. So yeah, I think that’s important.

And, and I think it’s also important to have more autistic researchers doing this research, because for so long it was non-autistic people doing the research and you get a lot of sort of pathologizing and just looking at things very negatively. And I think that it’s important, like, researchers like you, it’s just so important to be doing this research. And I’m excited that in the last few years there’s been more and more autistic researchers doing research on these topics.

Kana Grace: Yeah, thank you for saying that. I, I, yeah, I totally agree. I, I know there are lots of non-autistic autism researchers as well, and their presence is important as well. They have their own strengths, we have our own weakness as well. And I hope that we can try to work better with each other because currently, sometimes autistic researchers feel not as powerful as other non-autistic researchers, to get our voices out or to get more experiences in academia, for example.

Carolyn Kiel: Yeah, that’s true. We definitely need to work together. We need researchers who are autistic and non-autistic looking at these and really looking at it from like a neurodiversity or neurodivergent affirming perspective. And I know that that’s something that is part of your research approach as well.

And I think I wanted to understand better about what that really means in terms of doing research. So I guess, like, what does it mean to be neurodiversity affirming as a researcher? And why is that so important?

Kana Grace: Yeah, so I think neurodiversity affirming research is to do research that is important and meaningful to neurodivergent people and to do research with neurodivergent people as much as the fundings and time allow.

So we tend to call this co production, but full co production is not always possible because of as a constraint of fundings or time in research, and I’ve actually found it really difficult to do the co production because I think if we need, if we do co production, we actually need to pay neurodivergent co producers in research. Those people with lived experiences, because their experiences, expertise are important and we need to show that respect. If we do that as a voluntary position, it’s not the same, I feel.

And, and also I think to make research neurodiversity affirming, it’s also about making engagement of neurodivergent people as inclusive as possible, like ways of communication. So for example, maybe you don’t have to go in to some labs in person. Maybe we can do something like this on Zoom.

Carolyn Kiel: That, that makes a lot of sense. And again, really focusing on, on topics that are important to the autistic community and really meaningful is, is a big part of that, but then how you conduct the research as well. Absolutely.

So your career has been in academia and I, I personally have never worked in academia. I, I’m sure it has its own specific challenges and, you know, I, I, from what I’ve heard, it can sometimes be quite high pressure, especially if if you need to publish and you’re a researcher, but I’m curious about your experience, like, especially like, what’s it like being a neurodivergent person who’s working in academia?

Kana Grace: Yeah. So I’ve been in the university settings for so long since my undergraduate. So it’s been almost 10 years. So it’s what it is for me. So I don’t know what outside looks like, what, what it’s like to work in other settings, but I’ve worked with other researchers, including those who are also clinicians. And my experiences have been, mixed, I think. So what I’ve learned, as sad as it sounds, people without lived experiences don’t actually understand. So professionals, including researchers, think they do, but they don’t. So I work nearly exclusively with those with lived experiences now, and it’s intentional.

So then those professionals tend to miss the opportunities to support neurodivergent people in front of them, because they’re looking at the big picture and they’re trying to help the community. So they have the good intention, but not making positive impacts on someone, someone’s life. After all, like, many academics tend to be after their own interest, not for the interests of neurodivergent people they say they’re working for. So that’s something I’ve felt quite deeply.

But another thing I could say about working in academia is something that I benefited so much in academia and that was specialist mentoring. So I had a specialist mentor during my PhD in the UK. And that was the first time I had this kind of support because I didn’t know this kind of support existed, in Japan or in the US. And my specialist mentor was a really great help, a huge help during my PhD. So now I extend that same support to other neurodivergent people.

So this kind of support is usually for those in higher education settings in the UK. And outside of the UK, there aren’t really that kind of support available. So I wanted to expand this support beyond the border of the UK and also beyond the border of higher education settings. Because when people go into employment, that’s when they find less support compared to when they’re in educational settings.

Carolyn Kiel: Yeah, I hadn’t heard that term before, specialized mentor. And I’m someone who’s lived and grown up in the United States. So, you know, we have the concept of mentorship, but, I hadn’t heard that term and from you describing it, it sounds like something incredibly helpful for students, especially neurodivergent students, but probably many other students as well, to help them kind of get through their education and prepare them for wherever they wind up, whatever they wind up doing afterwards.

How is it different from sort of general mentoring? Is it very focused on certain topics or very structured, like, what does that look like?

Kana Grace: So, the kind of support I got during my PhD was called Specialist Autism Mentoring. And there is another version, it’s called Specialist Mental Health Mentoring, or something like that.

And I myself call my service as Specialist Neurodivergence Mentoring. So each of that support focuses on specific thing, autism, mental health, neurodivergence. So for example, the support includes managing daily tasks or making schedule together to make a feasible plan for an exam or managing stress, managing anxiety.

And also another thing I deal with a lot in my own mentoring practice is to help neurodivergent people to go through the burnout cycle because that’s something people find really difficult. And I’ve had that myself. Definitely. So yeah, that’s something we do in mentoring.

Carolyn Kiel: Yeah, that’s great because I know many neurodivergent people do struggle in, in, in school probably throughout, but I imagine in university, at least in the, in the United States, there are some supports, but I feel like these days it’s even less than we have in like our primary and secondary schools. And the student really has to be proactive and asking for things like accommodations, and I don’t really think we have a lot of people who are assigned to help mentor in very specific ways and help with those. So I think that would help a lot of neurodivergent students stay in university and improve our graduation rates because a lot of people do wind up leaving because of burnout or or other struggles like that. So, yeah, that’s really great.

You’ve lived in many different countries, you know, you currently live in Japan. You’ve lived in the UK. You’ve lived in the US. What attitudes or general sentiments about neurodivergence have you noticed, mainly in Japan and, and then we can talk about how that compares to other countries that you’ve observed.

Kana Grace: Yeah. So I was born and raised in Japan, in mainland Japan, and I did my undergraduate and master’s in Boston in the US, and I did my PhD in the, in London in the UK. So from my experiences, I feel in Japan, a lot of attitudes towards neurodivergence is quite medical deficit model. Many research projects actually try to find causes or cure neurodivergence, so that really makes me really angry when looking at their research projects and descriptions. And the language they use is also an issue, I feel. So we call autism “Jiheishō” in Japanese, and it literally means self closed disorder. So I think it should be replaced with “autism” in katakana form, just following autism in English. So I’ve felt the UK is leading the way in terms of neurodiversity affirmative work in research and practice. So including specialist mentoring support and yeah, that as well, and also involving lived experiences. People with lived experiences in important decision making and promoting co production.

Carolyn Kiel: Yeah. In terms of society’s view of neurodivergence or autism specifically, In Japan, is it sort of similar to like, like the medical deficit model? I mean, I know that’s a very big generalization about an entire country and culture, but I guess what have you observed compared to, to other countries in that way?

Kana Grace: Yeah. So for example, media, when autism or other neurodivergence are featured on, for example, on documentaries or news, they they use very sad music to it. And they make people feel sorry for neurodivergent people or autistic people. And I really don’t think that’s the attitude we need for neurodivergence nor autism, because we don’t need people feeling sorry for us. We need more understanding, more acceptance, and, I think a lot of negative things about being autistic, being neurodivergent, are featured on media, whereas I think a lot of negative things about being autistic, being neurodivergent, are featured on media, whereas strengths are not featured. Strengths are not treated, very well here.

And also, I think there is a cultural aspect to it as well, that in educational settings, children are expected to do the same thing as other students, the same subjects, at the same, same pace, same homework, same goals. And usually similar kinds of aimed universities to go. So we seem to have the same expectations for every one of students when we have different needs, different strengths. That’s a problem.

Carolyn Kiel: It’s interesting how it, it compares across cultures. And yeah, absolutely. I think, you know, really, really across the world, we could definitely use more understanding and I know that’s what a lot of your research ultimately will, will help understanding and more, you know acceptance and appreciation of autistic and other neurodivergent people as well.

What goals do you want to achieve through your research, whether it’s other topics you want to look at or other impacts you want to have with it? What kind of goals would you have with that?

Kana Grace: So my goal, my overall goal in my research is to provide scientific evidence to make make people, make society believe the experiences of neurodivergent people and to make them treat our lived experiences more seriously.

And my current interest in research is in physical health in neurodivergent people, particularly connective tissue disorders, because I have them and also my mom has them. And interestingly, I knew about connective tissue disorders since I was in my first grade, so I was six, and my mom was very, very sick because of connective tissue disorders. So I went to the hospital with her so many times, but I didn’t understand what was going on. That was too complicated for me. But now I started to understand the overlap between connective tissue disorders and neurodivergence. And then see also a connection within my family, myself, and also my mom, and I need to have more and more passion for this topic.

But yeah, it also, it’s not just my interest, but it’s also the interest of community when I do the research. So, I want to know more about this topic. And also, if this has a potential to prove lived experiences as scientific evidence or things like that, because my overall aim is always and has always been to to make our lived experience be heard and be treated more seriously.

Carolyn Kiel: Yeah, I think that’s really important and it sounds like the research that you’re, you’re doing now and that you’re planning to do will be incredibly helpful to the community because a lot of these are things that people are struggling with and are topics that are not well understood by many, many people. So I think that’s really going to be a big help. Oh, that’s great. Wow.

Well, Kana, thank you so much for sharing your own story and talking about all the great research that you’re doing. How can people get in touch with you if they want to learn more about the kind of work that you do?

Kana Grace: Yeah. So for more about my work it’s all on my Linktree. So you can look at my Linktree and also keep in touch via Twitter, LinkedIn, or Instagram. And for any inquiries, like regarding one to one specialist mentoring support or future talks, you can get in touch with me via my organization website Valtameri.. That is also on my link tree.

Carolyn Kiel: Okay, great.

I’ll put your link tree in the show notes so that people can contact you through that. That’s great. You know, as we close out, is there anything else that you’d like our listeners to know or anything that they can help or support you with?

Kana Grace: Thank you so much for asking that. I’m actually launching a course on neurodivergent health next year, and I will announce the details on my social media outlets soon, so please join me in the course.

I’m very excited for this course. I’m spending so much time on making and developing the course. So I hope, and I am sure it will be a great course. And it will be a unique, one of a kind course as I speak from my experiences as a researcher, practitioners, as a mentor, and most of all as a person with lived experiences.

So the course is for anyone who wants to learn more about health in neurodivergent people, social, mental, and physical health, all of them. And I expect clinicians, educators, neurodivergent people and their family members to join me.

Carolyn Kiel: That’s awesome. And is that, will that course be open to anyone around the world?

Kana Grace: Yeah, it will be. Yeah, all. And I hope to accommodate the time zone as well.

Carolyn Kiel: That’s fabulous. Well, Kana, again, it’s been really great talking with you. Thank you so much for being a guest on my show.

Kana Grace: Thank you so much for inviting me. It’s been a pleasure.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend, give it a shout out on your social media, or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at Beyond6seconds.net. Until next time.