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Codesigning a disability disclosure decision-aid guide and planning tool for Canadian autistic youth and young adults: DISCLOSURE (Do I Start the Conversation and Let On, Speak Up and REveaL?)

Submitted by:

Vanessa Tomas

Email:

vanessa.tomas@mail.utoronto.ca

Author(s)

Vanessa Tomas, Shauna Kingsnorth, Bonnie Kirsh, Evdokia Anagnostou, Sally Lindsay

Institution of primary author:

University of Toronto, Rehabilitation Sciences Institute and Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital

Background:

Deciding whether and how to disclose a non-visible disability like autism at work is complex. This decision is especially challenging for autistic youth and young adults since they are newly entering the labour market and are at a developmental period where they are still learning and fostering important decision-making and self-determination skills. Youth and young adults on the autism spectrum may benefit from tools to support disclosure processes at work; however, no empirically tested, evidence-based, or theoretically grounded tool exists to support disclosure decision-making and navigation among this population.

Objectives:

This poster presentation outlines and describes the process of codesigning a disclosure decision-aid guide and planning tool prototype with autistic youth and young adults that may cultivate self-determination and decision-making skills.

Methods:

We engaged four Canadian autistic youth and young adults (two men, two women; aged 18-29; two with disclosure experience, two without) to codesign the tool over five interactive online meetings and work between meetings from July 2021 to January 2022. Our work was guided by codesign (i.e., design thinking, generative tools/strategies) and patient-oriented research best practices with vulnerable populations, recommendations from the International Patient Decision Aid Standards, and research on knowledge translation tool development. The content and structure of the tool were informed by knowledge syntheses and primary studies about autism and disclosure, findings from a needs assessment with Canadian autistic youth and young adults conducted by our team, relevant theories and frameworks from knowledge translation (Behaviour Change Wheel and Theoretical Domains Framework) and human motivation (Self-Determination Theory), and considering intersectionality. 

Results:

We codesigned the prototype of a tool, titled DISCLOSURE (Do I Start the Conversation and Let On, Speak Up and REveaL?). The tool aims to increase knowledge about disclosure and non-disclosure options, disclosure benefits and risks, and the factors to consider; help clarify workplace needs, personal values, identities, and disclosure-related goals; and support self-determination and decision-making skills. The tool is an interactive PDF document and includes the following sections: 1) what is disclosure, 2) considering the workplace environment, 3) considering the person/people you are disclosing to, 4) reflecting on your needs and strengths, 5) identity and personal values, 6) disclosure in action, 7) summary, and 8) disclosure planning. The tool also incorporates reflection activities, case scenarios, experiential quotes, and takeaway resources. Engaging with youth partners to codesign the tool was imperative to increase the likelihood that the tool is relevant, meaningful, and impactful. 

Conclusion:

We developed an evidence-based, theoretically informed, codesigned disclosure decision-aid guide and planning tool that may help Canadian autistic youth and young adults navigate workplace disclosure, improve self-determination, and make autonomous, confident disclosure decisions. Aligning with the decision-aid and knowledge translation tool development and evaluation literature, subsequent stages of this project will involve research studies to assess the usability and potential impact of the tool. This work may increase the supports available to Canadian autistic youth and young adults and help them to develop critical skills needed for the transition to adult life. 

VanessaTomas poster

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