Measuring Autistic Adult Well-Being
What's the study about?
Promoting well-being in autistic people is important, but researchers do not fully understand how to measure or improve it. This project aims to create a new survey designed to measure well-being in autistic adults. It will also update three well-being surveys commonly used with the general population to make them more useful for autistic adults.
Who can participate?
Autistic adults who are their own legal guardians will be eligible to take part in this research. Parents and caregivers of autistic adults, including those who are not their own legal guardian, will also be eligible to take part in this research.
What will participants be doing?
Questionnaires: You will be asked to complete a set of questionnaires; this should take about 45-60 minutes. Questionnaires will ask about your autistic adult’s current self-care skills, well-being, and emotional and behavioral health.
Focus group or cognitive interview: You will be asked to complete one focus group or one individual cognitive interview. If you complete a focus group, you will be asked to review focus group questions and materials that will be sent to you in advance. On the day of the focus group, you and 6-8 other participants will answer questions about what you think well-being means to your autistic adult family member, and aspects of your autistic adult’s life that support or get in the way of their well-being. We expect focus groups will take approximately 60 minutes to complete. If you complete a cognitive interview, you will be asked to answer a series of questions related to the well-being of your autistic adult. You will be asked to read each question, explain your selection out loud, and put the instructions, response options, and items in your own words. You will also be asked open-ended questions about things that are confusing or helpful about the questionnaires. We expect cognitive interviews will take 60-90 minutes to complete.
Video and Audio Recording: Video and/or audio recordings will be made to record you during the focus group or cognitive interview. Recordings will be used for research and training purposes. The recordings will be used for analysis by the research team. If you do not agree to be video and/or audio-recorded, let the researcher know you do not agree to participate in this research. The recordings may include the following information that can identify you: your likeness, your name, and/or personal details about you. Every possible safeguard to protect confidentiality will be maintained.
Why is this important?
By creating a new well-being survey specifically for autistic adults and improving existing surveys, this project will increase understanding of autistic well-being, and could lead to better services and supports for autistic adults.