Inclusion and Rigor in Qualitative Autism Research: A Response to Van Schalkwyk and Dewinter (2020).
Autistic adults want sex-and-relationship studies that team up with them to teach skills and kill stigma.
01Research in Context
What this study did
Hull et al. (2021) asked autistic adults what sex and relationship research should look like.
They held open interviews and focus groups. Thirty-one autistic people spoke.
The team wrote down every wish and worry about love, dating, and stigma.
What they found
The big message: stop studying us, start helping us.
People want studies that teach safe dating skills and fight shame.
They said, "Work with us, not on us." Participatory means autistic co-researchers help plan, run, and share the work.
How this fits with other research
Sibeoni et al. (2022) looked at sensory stories and also found autistic adults describe life as one big mix of body, feeling, and people. Both papers say, "Look at the whole picture, not just one part."
Shogren (2024) tells researchers to share power with people who have IDD. Laura et al. say the same for autism. Together they push "research with" instead of "research on."
Hamama et al. (2021) showed autistic adults hate surprise phone calls. Laura et al. add that blunt sex questions feel just as rude. Both say: ask how we want to talk, then ask what we want to know.
Why it matters
If you run social-skills groups, ask clients what dating topics feel urgent, then let them help pick lessons. Offer email or chat sign-up instead of phone intake. Add lessons on consent, online safety, and shame-busting. Share lesson drafts with autistic co-leaders before you teach. Small moves like these turn old "research on" into real "research with" and make sessions stick.
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02At a glance
03Original abstract
The number of empirical studies on sexuality and intimate relationships in autistic people has grown over the last years with the increasing awareness that sexuality and intimate relationships are an important part of life and well-being for autistic people. Further, expression and enjoyment of sexuality is a fundamental, basic human right. This paper reports on needs for future research in this area based on the input of autistic adults, researchers, and other stakeholders (e.g., parents and professionals). Utilizing the nominal group technique, 65 individuals participated in eight groups in which they brainstormed on research questions they deemed most important. Responses were categorized into themes and ranked according to importance based on the level of priority attributed by participants. Findings suggest that future research should focus on developing ways to support sexual and relationship well-being and getting a better understanding of sexuality and relationships in autistic people. Also, attention was drawn to the need for studying the influence of stereotypical societal views, and stigma. Finally, the importance of participatory research to include perspectives of autistic people in research and practice was stressed. LAY SUMMARY: Sexuality and romantic relationships are part of daily life for most people, including autistic people. For this study, groups of autistic people, professionals, and autism researchers discussed which research on autism, sexuality, and relationships is needed and can help autistic adolescents and adults. The group discussions revealed that more research is needed on how to support well-being relating to romantic relationships and sexuality in autistic people and how the people around them can contribute to this. Therefore, we also need to learn more about how autistic people of all ages and throughout their lives experience sexuality and relationships. Finally, the need for attention to the role of stereotypical ideas and stigma about autism, sexuality, and relationships was pointed out. Attention to the experiences of autistic people can help professionals, researchers, and policy makers to offer and organize attuned support and do relevant research. Autism Res 2020, 13: 1248-1257. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC.
Journal of autism and developmental disorders, 2021 · doi:10.1089/aut.2018.0003