Researcher bios and how their research backgrounds relate to this study
Dr. Elizabeth Straus (they/she) is a queer, autistic, disabled nurse scholar and educator with a background in critical qualitative and arts-based research approaches centering critical access and crip neuroqueer practices to promote welcoming research spaces. Their emerging program of community-engaged research aims to co-produce critical intersectional knowledge and creative outputs with disabled, autistic, and 2SLGBTQIA+ communities to inform and transform narratives of disability, autism, and gender/sexuality, and related structures and practices, in health care and education. Their research centers co-creation of new modes of accessible, socio-culturally relevant research and affirming pedagogical and clinical practice by, with, and for autistic, disabled, 2SLGBTQIA+, and other marginalized communities. They seek to create urgently-needed new knowledges and approaches to body/mind difference by putting disabled, autistic, an 2SLGBTQIA+ voices at the centre of the inquiry and by co-creating expertise that has potential to advance equity and inclusion in the world. As a postdoctoral scholar and Adjunct Professor with Re•Vision: The Centre for Art and Social Justice, Dr. Straus is supervised and mentored by Dr. Carla Rice.
Dr. Carla Rice is a Professor, Tier 1 Canada Research Chair in Feminist Studies and Social Practice, and the founder and academic director of Re•Vision: The Centre for Art and Social Justice at the University of Guelph. Dr. Rice undertakes progressive research that promotes social change through interdisciplinary, arts-based, and community engaged collaborations. They have extensive experience in community-engaged research and knowledge mobilization using storytelling and the arts that contribute to transforming views regarding those who embody difference, including those who identify as disabled and/or 2SLGBTQIA+, and advancing well-being, inclusion, equity, and social justice. Dr. Rice's and the Re•Vision team’s extensive work with multimedia storymaking approaches and the resources available through the Centre will contribute substantively to designing and conducting multimedia storymaking initiatives in this study. As a prominent scholar in gender and sexuality, embodiment, bodymind difference, and feminist, neomaterialist, and intersectional theorizing, Dr. Rice will contribute substantially to analysis in collaboration with Dr. Straus and autistic co-researchers on the project.
Purpose of this research project
The purpose of this study is to generate knowledge based on experiences of autistic individuals related to gender, sexuality, and autism to inform and transform narratives of the gender-sexuality-autism in health care, “psy” professions, and education. In recent decades, there has been increasing scholarly and autistic selfadvocate attention to the entanglements of gender, sexuality, and autism; however, how these are understood remains contested. It is estimated that between 1 in 50 and 1 in 44 people are autistic; a recent U.S.based national survey of LGBTQ+ youth indicated almost 5% identified as autistic and 35% suspected they were autistic (The Trevor Project, 2022). In another study, it was estimated that trans and gender non-conforming adults were 3 to 6 times more likely to be autistic than cisgendered folks (Warrier et al., 2020). Canadian data is limited. Numerous deficit-based and pathologizing theories regarding this “problem” of autistic gender/sexual diversity have circulated in mainstream autism literature, though often with little to no empirical support. While autistic selfadvocate and activist communities have long critiqued and challenged normative gender systems, these counternarratives have seen limited uptake in academic and professional dialogues where they have greater possibility to transform praxis.
This research is autistic- and 2SLGBTQIA+-led. Our team is a collective of autistic, neurodivergent, and/or mad-identified academics, community members, artists, and advocates who identify in diverse ways in relation to gender and sexual orientation. In this study, we aim to explore autistic experiences at the gender-sexuality-autism nexus by conduct in-depth interviews with approximately 30 autistic individuals to understand their experiences in relation to gender, sexuality, and autism. These interviews will incorporate a crip neuroqueer approach that recognizes and welcomes difference in how participants engage with storytelling through interviews. For example, we offer a variety of different ways participants could engage in storytelling through an interview or conversations, such as in-person or over zoom, in one more multiple sessions, through various different ways of communicating (e.g. AAC, text), or even through asynchronous methods such as voice messages or text-based messaging/emailing. We will also conduct one online multimedia storytelling (digital storytelling) workshop with a sub-group of 10 interviewees with support from Re•Vision: The Centre for Art and Social Justice, a mobile-multimedia methodologies centre and lab based at the University of Guelph. In the workshops, participants will create multimedia 2-4-minute-long digital videos with the support of artist facilitators (https://revisionstorymaking.ca). Our team of autistic academic and community researchers will engage in analysis through neomaterialist, queer, trans, intersectional theoretical approaches. We intend to engage in a variety of knowledge mobilization activities, including workshops with health professionals, community screenings of digital stories, publications, presentations, and blogs.
The Trevor Project. (2022, April). Research brief: Mental health amongst autistic LGBTQ youth. https://www.thetrevorproject.org/research-briefs/mental-health-among-autistic-lgbtq-youth-apr-2022/
Warrier, V., Greenberg, D. M., Weir, E., Buckingham, C., et al. (2020). Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nature Communications, 11(1), 3959.
How this research will help LGBT2SQ people and communities
Our research will raise awareness and social consciousness of the effects of and alternatives to dominant narratives of the entanglements of gender, sexuality, and autism through challenging stereotypes and contribute to co-creating affirming practices and cultures in health care settings that engage with 2SLGBTQIA+ autistic youth and adults. At a time of calls for and development of a National Autism Strategy and increased attention on autism in the media, our KM activities will enhance public and professional discourse about the intersections of gender, sexuality, and autism and open up possibilities for conversations to strengthen health care experience for autistic folks in our community. By creating affectively engaging multimedia digital stories/short films, we also aim to enhance cultural representations of 2SLGBTQIA+ autistic embodiments within and beyond 2SLGBTQIA+ communities.
Participants
We are looking for interview participants who:
1. Identify as autistic or have attracted the label of autism (e.g. autistic, neurodivergent, on the spectrum, living with autism, other). Self-diagnosis is welcomed.
2. At least 16 years old
3. Currently reside in Ontario
4. Able to communicate in English. All forms of communication, including text, ASL, and AAC, are welcome.
5. Be willing and able to participate in an interview, which will be recorded.
Participants for the multimedia storytelling workshop will be drawn from the interview participants who indicate interest in participating in the workshop.
Compensation
$45 for 60-90 minute interview. For interviewees who participate in the multimedia storytelling workshop, an additional $200 is offered.
Mitigation measures
We see the risk being minimal, as autistic individuals sharing stories in this study will have likely reflected upon their gender, sexuality, and autistic selves in their day-to-day life; they may actually find it beneficial to discuss their experiences, especially with interviewers who are also autistic, and to know that this is being considered in research. This being said, we recognize the potential for psychological and social risks.
Reflecting on their experiences may lead to negative feelings or distress if they have experienced discrimination, violence (e.g. gender-based, sexual, ableist), or other negative experiences. Reflecting on such experiences may be uncomfortable or distressing for some participants. In interviews, participants will be informed and reminded that they may skip any questions that they are uncomfortable with or do not wish to answer. In online DST workshops, participants will be supported to freely choose the topic and content of their stories.
In interviews, participants will be able to choose how the interview occurs – the spatial and temporal location (in-person, by phone, on Zoom, asynchronous, multiple sessions, etc.) and how they want to communicate about their experiences. The aim of offering these choices is to recognize diversity in participant access needs and practices that are most comfortable for them. In addition, participants will be offered the option of bringing a support person or an “active listener” into the interview space. The role of the active listener is to be present and actively engaged in listening and observing for any signs of discomfort, fatigue, or overwhelm and to support the participant as needed if breaks or grounding support is needed. If the participant chooses to bring in an active listener or support person, they will have the freedom to select who they want to join. Participants can also request the research team provides an active listener. In this case, one of our autistic community co-researchers with experience with facilitating support groups for autistic 2SLGBTQIA+ folks has been identified to join the interview. We will emphasize to participants that whether or not, and how, an active listener would join the interview is their choice and they are not obligated to do so. We have also compiled a list of resources, both general and those that are 2SLGBTQIA+ specific, that participants can access should they experience distress during the interview.
Participants may share information about their experiences in relation to gender, sexuality, and autism, but may not be “out” to family, kin, friends, and/or publicly, which could risk how others see them. We will work closely with online multimedia storytelling workshop participants to ensure that they are aware of the potential risks of including such information in their stories, given the potentially public nature of digital stories. Facilitators will assist participants to detect potentially identifying information and to tell their stories in ways that protect and obscure their identities (i.e. by omitting or changing identifying information, editing or avoiding use of identifiable images, using pseudonyms, having voiceover work done by facilitators, etc.). Re•Vision researchers and facilitators are experienced in supporting participants to tell stories that they are comfortable with sharing and that protect their privacy and personal information. To date, participants in Re•Vision multimedia storytelling workshops have completed over 800 digital stories across many research projects dealing with a range of sensitive topics.
The interview data will also be anonymized and the participant will be invited to use a pseudonym throughout the multimedia storytelling process if they desire, thereby minimizing the risk of identification further. As noted, online multimedia storytelling workshop participants will be encouraged to protect their identities (i.e. by omitting or changing potentially unique or identifying information, minimizing the use of identifiable images – including by ensuring that any potentially identifiable features of their home environments are not included – or using image manipulation software to obscure any identifying details, using pseudonyms, having voiceover work done by facilitators).
Promoting the Study
We are using a variety of approaches to promote the study. These include sharing on the Re-Vision Centre website, social media, and internal networks, through the Re-Storying Autism project (PI Patty Douglas, Queen's University) networks, various community health centres across Ontario, 2SLGBTQIA+ community organizations, Egale Canada, Autistic self-advocate online groups, and snowball approaches through personal networks.