Researcher bios and how their research backgrounds relate to this study

As a queer woman of colour, Abitha is passionate about improving mental health outcomes for marginalized communities. Her previous experience includes working with youth with borderline personality disorder and their caregivers in a mental health research lab (the Multimodal Approaches to Pathogenic Personality and Emotion Development Lab), collaborating on national guidelines on the treatment of anxiety in older adults at the Canadian Coalition of Seniors' Mental Health, and advocating for gender-inclusive care training for physicians through the Healthy Debate. By leveraging her own lived experiences with diagnosed mood and anxiety disorders, she hopes to improve the accessibility of mental health care for the neurodiverse population. (More information about the co-investigators' experiences with autism and/or mental health research can be found in the attached research ethics board protocol)

Purpose of this research project

This project’s primary objective is to help empower autistic adults (>18 years old) in the Greater Toronto Area (GTA) to express their mental health needs to healthcare providers, regardless of whether these providers have training or experience in the field of autism. For the purposes of this project, we are using the definition of healthcare provider from the Government of Canada’s Canada Health Act, which states that the term refers to any person “lawfully entitled under the law of a province to provide health services in the place in which the services are provided by that person” (Minister of Justice, 2017). Following the Toronto Translational Framework (TTF), our approach involves co-designing and testing a low-fidelity prototype of an intervention directly with the autistic population through the formation of an advisory committee for participatory design and focus groups for evaluation. Possible interventions within scope include, but are not limited to, a worksheet, recording, video, website, app or other digital tool. For example, an app that walks users through documenting their thoughts, feelings, and mental health issues, and proposes ways to bring these up to a healthcare provider, may be a viable intervention to prototype. The goal is that this intervention can be used independently by autistic adults and/or brought to their healthcare providers to help them express their mental health needs. By empowering this community, we aim to enhance their self-awareness and confidence in navigating and accessing mental health support.

How this research will help LGBT2SQ people and communities

Many research studies have demonstrated the unique mental health challenges or experiences encountered by individuals who identify as neurodivergent AND as a member of the LGTBQ2SQ+ community. We want to ensure this intersectionality is accounted for in our research methodology by recruiting genderqueer + neurodiverse folx for our autistic advisory committee and focus groups. We hope by co-creating this intervention, we can help improve mental health outcomes for both these populations.

Participants

To participate, individuals must: be 18 years of age or older, have an official autism diagnosis, be able to understand and provide informed consent (sign and understand the consent form) without assistance from another person, have access to a technological device (laptop, computer, tablet, smartphone) and the Internet, currently reside in the Greater Toronto Area (GTA), and be able to communicate in English.

Compensation

For the autistic advisory committee, participants will be provided with an honorarium of $25.00 (CAD) per session, for a total of $75.00 (CAD) per participant. Participants will be provided with this honorarium prior to each session after they have completed the informed consent process. For the two focus groups, participants will be provided with an honorarium of $25.00 (CAD) for attending the focus group to which they are assigned (one session). Participants will be provided with this honorarium prior to the focus group after they have completed the informed consent process.

Mitigation measures

Since correspondence with participants will predominantly occur over e-mail, there is a minimal risk that information is accessed by an unauthorized third party. To minimize this risk, the research team will ensure all correspondence with participants occurs solely over the official study e-mail (mendinitiative.trp@utoronto.ca) which requires dual authentication for the research team to access. As all participants will entail discussions on previous mental health experiences, some may feel discomfort or distress recalling potentially negative or sensitive memories. Discussion of patient empowerment preferences may also lead to disagreements that elicit feelings of discomfort. To mitigate these risks, participants will be provided with a list of resources they can access before, during, or after committee sessions. In addition, participants will be reminded of their right to refuse to answer a question or the right to withdraw from the study at any time without negative consequences on the informed consent form, committee information sheet, and at the beginning of each participatory design session.

Promoting the Study

Participants for the AAC and intervention evaluation focus groups will be recruited through snowball sampling and convenience sampling via a) e-mails sent to individuals from organizations serving the autistic adult population, b) word of mouth, c) social media, d) physical posters/flyers in various locations, i.e., the University of Toronto campus. Our research team has existing connections with community organizations such as The Mindful Project at the University of Toronto, Autism Canada, and the Azrieli Adult Neurodevelopmental Centre at CAMH. Our team will use these connections, as well as connections with other individual stakeholders in the autism and mental health field, for the recruitment process. To date, we have posted on the Autism Canada and Autism Ontario website, as well as shared our study flyers on Linkedin.