*We/us/ indicate Valtameri.
*I/me/myself indicate Kana Grace, the author of this blog and the speaker of the talk.
This is a report on our second talk at OIST in January 2024.
Introduction
On Saturday, 20 January 2024, we, Valtameri, successfully conducted our second public talk at the Okinawa Institute of Science and Technology (OIST). The event, titled “Unmasking the Invisible Struggles: Navigating Neurodivergence and Co-Occurring Challenges,” aimed to shed light on the reality of navigating neurodivergence and co-occurring physical health challenges. The event details can be found on the OIST event page: https://groups.oist.jp/ganjuu/event/unmasking-invisible-struggles-navigating-neurodivergence-and-co-occurring-challenges.
As the speaker, I, Kana Grace, combined personal experiences with the latest scientific findings to provide a comprehensive view of the subject. The day was divided into two sessions: a morning session in Japanese and an afternoon session in English.
The post-event survey provided valuable insights into the attendees' experiences. While the analysis in this report may not meet the rigorous standards of academic journals, it offers an overview of the demographics, reception of the talk, requests for future events, and the overall impact of the talk.
The most memorable aspect of the day was witnessing the spark in the eyes of those who approached me for conversations both before and after the talk. I am deeply honored and touched by the positive feedback and personal experiences shared in response to my presentation. A heartfelt thank you to everyone who attended and enriched our talk with your presence. Your engagement and feedback are immensely appreciated and will guide our future endeavors.
Attendee Overview
We initially planned for a capacity of 20 attendees per session. However, due to high demand, especially for the Japanese session which reached full capacity within days of advertising, we increased the number of spots to 30. The Japanese session had a waiting list of 19 people. Despite our efforts to ask attendees to notify us in case they could not attend, enabling us to allocate their spots to those on the waiting list, unfortunately, six people did not show up. For the English session, all 12 registered attendees joined us. We purposefully kept the session sizes small to create a comfortable environment for neurodivergent attendees and myself.
Following the event, attendees were asked to fill out a survey. Of the 36 attendees, three were children accompanied by their caregivers or family members. Consequently, 33 attendees (out of 36) completed the survey. As seen in Table 1, more than half of the attendees were either neurodivergent themselves or caregivers/family members of a neurodivergent person. Additionally, over 20% of the attendees, who were neither neurodivergent nor personally connected to neurodivergence, attended to learn more about the subject.
To analyze the open-text responses from attendees to questions (i.e., “We would like to hear your thoughts and comments about today's talk. Please share your feedback here”, “If you are interested in our upcoming talks at Valtameri, please let us know what topics or content you would like to learn more about”), I utilized reflexive thematic analysis to discern patterns in their experiences of the talk and their interests in future topics. This involved a thorough engagement with the data, including repeated readings/listenings, and adhering to a methodologically sound approach for reflexive thematic analysis.
It is important to note that while I conducted this analysis and prepared this report, being the speaker at the talk, my approach was strictly objective. I focused solely on the attendees' feedback, deliberately refraining from incorporating my personal reactions to their comments.
Quotes are presented verbatim including any spelling and typographic errors. For responses originally in Japanese, I have translated them into English, taking care to retain their intended meanings as closely as possible.
Attendees’ feedback on the talk
The feedback from attendees was overwhelmingly positive. One person commended, “Excellent presentation! Thank you so much for spreading awareness on the topic of neurodivergence. Your passion is noteworthy and more impactful than you probably can realize at the moment” (Attendee 5; henceforth A5). Similarly, another attendees found the talk “interesting, informative, inspiring, validating, and motivating” (A9). This sentiment was reinforced in post-event emails, with one attendee expressing admiration for the enlightening insights on neurodivergence, and another describing the presentation as “astounding.”
Four key themes emerged from the attendees' experiences with the talk (see Figure 1).
Figure 1. Thematic map of attendees’ experiences with the talk
Theme 1: Enhanced understanding of neurodivergence and co-occurring physical health challenges
Many attendees reported an increased understanding of neurodivergence and its co-occurring physical health challenges. For instance, one attendee remarked on an increased awareness of the often-invisible physical health complaints associated with neurodivergence: “I leave feeling much more aware of language and the physical health complaints often associated with ND, with most invisible to others” (A7). Another experienced a significant shift from their previous limited understanding: “The lecture marked a significant shift from my previous limited knowledge and assumptions” (A15). An attendee reflected that the talk underscored the value of understanding lived experiences, as captured in their statement: “I have come to realize the importance of listening more to neurodivergent people to create a society where they can live comfortably as themselves” (A20).
Theme 2: Appreciation for learning about lived experiences
A number of attendees shared gratitude for the opportunity to learn about lived experiences during the talk: “I really liked how you showed so many examples for hidden disabilities” (A3). One attendee found the lecture particularly valuable, contrasting it with their university education: “In university, I've mostly been learning about research findings and haven't had much opportunity to hear directly from those with lived experiences. Therefore, this lecture was incredibly valuable and, in my opinion, provided better information than the university lectures” (A18). Some attendees specifically commended the vulnerability shown in sharing lived experiences: “The very much real, lived, experience (and having the extraordinary strength to make yourself so vulnerable, to allow for others to learn) was impressive - thank you very much for such a precious opportunity” (A6).
Theme 3: Valuing the unique perspectives from personal experiences and academic insights
Many attendees remarked on the unique combination of personal and academic perspectives offered in the talk: “Thank you very much for speaking openly about neurodivergence, both from a personal and academic perspective” (A10), “I gained a lot of insight from this lecture, which was presented from the viewpoints of a person with lived experiences and researcher” (A21).
Theme 4: Hope in recognizing shared experiences
Many neurodivergent attendees shared that the talk helped them feel a sense of connection in their experiences. One attendee expressed how the talk provided comfort and empowerment: “So often I feel so alone and isolated with my lived experience and it was so comforting and empowering to see you being so courageous and vulnerable despite your challenges” (A9). Similarly, another found a sense of belonging upon realizing the link between their health issues and neurodivergence: “I teared up when I discovered that my health issues weren't a result of my laziness, but were actually challenges related to being neurodivergent, making me realize that I'm not alone in this” (A11). This newfound hope and recognition of shared experiences inspired attendees to advocate for others with neurodivergence. Some mentioned being motivated to share their own experiences, while others reflected on the talk's impact on their understanding of themselves and others: “Not only was it a great learning experience, but it also deepened my understanding of myself, my children, and those around me, allowing me to feel hopeful. The warm messages from the speaker were very encouraging” (A28).
Attendees’ interests in future learning opportunities
The attendees expressed a strong interest in participating in future learning events. One attendee conveyed enthusiasm for future lectures: “whatever your next lectures may be, I would be eager to attend and learn again” (A6). Similarly, another expressed a desire for the continuation of such lectures: “I would be happy if you could continue to giving these lectures” (A15).
Regarding attendees’ requests for future learning, five themes and two sub-themes were identified (see Figure 2).
Figure 2. Thematic map of attendees’ requests for future learning
Theme 1: Specific challenges and practical strategies to them
Many attendees expressed an interest in learning more about the specific challenges associated with neurodivergence and strategies for addressing them. One highlighted the desire to understand more about “some specific struggles, such as high suicide risk and high unemployment rates which you touched on during your talk, that are faced within the neurodivergent community, and how as a collective (both from a neurodivergent and non-neurodivergent perspective) these struggles could be lessened” (A10).
There was also a keen interest in practical advice for neurodivergent people. For example, one attendee mentioned, “I would be grateful to learn specific suggestions and improvement models for things like tidying up, driving, meals, and exercise” (A11). Additionally, some attendees wanted to explore how the neuro-majority could better support neurodivergent people. This included understanding the best actions to take in response to their challenges, as one queried: “what is the best course of action for those around neurodivergent people to take in response to their challenges” (A14). Another expressed interest in learning about the initiatives and considerations needed in educational settings: “what kind of initiatives and considerations are there or needed in schools and educational institutions” (A19).
Theme 2: Childhood experiences
Some attendees expressed a desire to understand the childhood experiences of neurodivergent people: “About your experiences in your childhood” (A8), “about school days” (A15).
Theme 3: Diagnostic procedures
There was interest in exploring the process and methods of diagnosing neurodivergence: “I want to learn more about how people get diagnosed as neurodivergence [neurodivergent]” (A2), “Diagnostic practices from a social model” (P7).
Theme 4: Social communication
Some attendees showed curiosity about the differences in social communication between neurodivergent individuals and the neuro-majority: “I am interested in Inclusive communication” (A4), “Social communication differences” (A7).
Theme 5: Parenting strategies
Some attendees were particularly interested in learning about effective parenting strategies: “Strategies for neurodivergent parents raising children in the digital and neurotypical world” (A5), “I would like to learn what to be mindful of in parenting, daycares, and elementary schools.” (A30).
My response to attendee feedback
Reading the attendees’ feedback moved me to tears. I am deeply grateful for each comment and am heartened by the experience of giving this talk. I am committed to continuing these discussions. To all attendees, thank you for your eagerness to learn, the time and energy you have invested, and your ongoing interest in these topics.
It was particularly striking and touching to learn that over 20% of attendees, who had no direct personal connection to the subject, were motivated to attend my talk to understand neurodivergence better.
The feedback from attendees, received through surveys, emails, or face-to-face discussions, has made a significant and meaningful impact on me.
The appreciation the attendees have shown for my openness in sharing my personal experiences echoes the sentiments of Brene Brown on vulnerability, reminding me of her insightful quote: “Vulnerability is the birthplace of love, belonging, joy, courage, empathy, and creativity. It is the source of hope, empathy, accountability, and authenticity” (Brene Brown, 2015).
The reach of our talks
Following our second talk in January at OIST, we have seen a significant impact: 22 new individuals have subscribed to the Valtameri monthly newsletter.
Our inaugural talk welcomed 28 participants, and our second talk saw an increase to 36 attendees. Overall, we have had the rewarding opportunity to engage with 64 individuals, sharing our knowledge and experiences.
