Attendees’ experiences with our talk in July 2023

At the lecture in July 2023, we (Valtameri) asked the attendees to complete an online survey to get their feedback on our talk (n=28). We have read your responses carefully. I (Kana) wanted to better understand your feedback, so… I analyzed it! (As a side note, this kind of perfectionism is common among autistic people, which can make us exhausted and distressed.) Anyhow, I will share the findings with you🙇‍♀️　

Most of the attendees were neurodivergent (ND) individuals, caregivers/family members of an ND person, or educational professionals working with ND people. No medical professionals working with ND people participated in our talk this time, but we are hoping to do future talks for those professionals, too.

Using a method called reflexive thematic analysis, I analyzed the survey results (data) of all participants in both Japanese and English sessions by classifying them into two categories: feedback/thoughts and requests for future lectures. Briefly speaking, I worked through six stages: 1) familiarizing myself with the data by reading it multiple times, 2) coding the data, 3) clustering the codes and identifying themes, and 4) developing themes, 5) refining themes, and 6) writing up the results. From 2 to 5, I asked my mom, who was helping me on the day, to participate in the analysis process so that my subjectivity would not affect the results. Quotes are presented verbatim, including any spelling/typographic errors.

1. Feedback/thoughts

Regarding feedback and thoughts, four main themes and five sub-themes were identified (see Figure 1).

Figure１. Thematic map of attendees’ feedback and thoughts on our talk

Theme 1: Being impressed/moved

Many participants told us that they were impressed and/or moved: “moving”(attendee in our English session 10; henceforth E10). Some people commented that they were dazzled by Valtameri’s advocacy work for ND people: “I am impressed that you [Valtameri] are working on advocacy from a perspective like Kana’s” (attendee in our Japanese session 2; henceforth J2), “I appreciate and support Valtameri’s wonderful work” (J13). One attendee told us that “the talk was full of hope for [autistic/neurodivergent] people” (J11).

Theme 2: Learning

Many attendees reported they learned from our talk: “Very insightful and I learned some new terms” (E8), “I am grateful that you as an autistic individual have openly spoken about your experiences. I got a deeper understanding of autism” (J9), “I could learn a current [latest] way of understanding autism, and am very glad I could come to this talk” (J7). Some attendees in our Japanese session explained that they experienced a transformation in their understanding of autism/neurodivergence due to our talk: “The way I see and view autism has changed a lot” (J3), “I now have changed my view on autism” (J8).

Also, there were feedback agreeing to the social model perspective: “I strongly agree to the idea of changing the environments, not people” (J6).

Some attendees in the Japanese session reported that they gained a better understanding of autism and neurodivergence: “I feel like I've got the answers to all the questions I've been wondering about and things I've never thought of before, so I need some time to organize my thoughts” (P14).

Theme 3: Changes in some terms

Regarding the suggested changes some terms on neurodivergence which I (Kana) have shared in the talk, many attendees agreed to the ideas. A number of attendees in the Japanese session agreed that using an English word for autism in Japanese (outizumu, not jiheishou) was better than using the traditionally-used Japanese translation of Jiheishou: “I was happy that, from this talk, I could learn the terms, ‘outizum’ (autism)/‘outisutiku’ (autistic), as an alternative to ‘Jiheishou’ which I did not like very much. From now on, I will introduce myself by saying ‘I am outisutiku’ (autistic)” (J10).

There were also voices wishing for the penetration of the word autism in Japanese society: ``I hope the day will soon come when the word autism disappears from Japan and is replaced by autism'' (J14); But I thought it would be good if it could permeate” (J10). Some people mentioned that they wanted the term, ‘outizum’ (autism) to be widely used in Japanese society: “I hope that the day will soon come when the word, jiheishou, disappears and it is converted to outizumu” (J14), “I hope the term, outizumu will take roots in Japan” (J10).

Regarding ADHD, I mentioned that it is more appropriate to view ADHD as Attention Dispersion Hyperactivity Difference instead of Attention Deficit Hyperactivity Disorder. One participant described their preference for this renaming:” I LOVE your renaming of ADHD changing Attention Deficit to Dispersion. Yes!” (E8).

Theme 4: Wanting to learn more

Many attendees in our Japanese session expressed their desire for learning more from us: “I definitely want to come to your lecture again if you do more here” (J5), “I would like to hear more from you” (J8).

While most of the feedback was overwhelmingly positive, one participant in our English session commented that the sound was not loud enough despite the contents being very interesting. I apologize for not noticing this during the talk. Thank you for this feedback, and in our future talks, I will talk louder by effectively using a mic.

2. Requests for future talks

Regarding requests for future talks, three themes were identified (see Figure 2).

Figure 2. Thematic map of the attendees’ requests for future talks

Theme 1: How best to support ND people

Many attendees asked for learning how best to support ND people. In our talk this time, we had a lot of preschool teachers, so the attendees were particularly keen to learn how to support young children who are/may be ND: “How to help and support children in early childcare education” (E6), “I would like some tips on how to make the environments (people and things) the best for ND children” (J3). Additionally, some people wanted to learn how to support ND adults: ”Professional development; mentoring” (E10).

Theme 2: Examples of ND people’s experiences

Quite a few attendees said that they wanted to learn more about ND people’s experiences: “I would like to hear about the stories of ND people (such as characteristics and perceptions), one by one” (J14), “More example of actual encounter of these kind of people and how to meet their needs” (E14). As examples of ND people’s experiences, there were some specific requests to learn my personal challenges and how I deal with them and experiences of ND people in childhood, and to hear from families of ND people.

Theme 3: Future activities of Valtameri/Kana

Some attendees in our Japanese session mentioned that they wanted to be updated about the future activities of Valtameri and me: “I would like [the perspectives from this talk] to take roots in Japan more and more, so I would like to follow the process” (J5).

To those of you who attended the talk and gave us your feedback, thank you so much for having shared your thoughts with us. Hearing/reading them, I felt it was a good decision to do this talk. Your responses to the talk were very encouraging to me😌 Based on your feedback, I will plan our future talks and workshops!

Kana