What do you mean I have autism?

Perspectives of the impact and lived experiences of individuals on the autism spectrum being uninformed of their diagnosis. 

Are you an individual on the autism spectrum who would like to share your experience of being uninformed of your diagnosis?

If you are 18 or older, speak English, and have received an autism (or related, such as ASD) diagnosis at least one year ago, you may be eligible to participate!

Participation involves completion of some tasks with our team, a questionnaire about you, and a one-hour interview about your experiences of being uninformed of your autism diagnosis.

Purpose of the Study

Parents and professionals face the question of whether or not to disclose an autism diagnosis to an individual after the diagnostic process. Various studies have explored the guardians’ experiences of the diagnostic process and autistics’ experiences of learning about their diagnosis; however, we have yet to examine the lived experiences of autistics being uninformed of their diagnosis and the outcomes of this decision.

The objective of the present study is to understand your experiences during the time you were unaware of your diagnosis because it was not disclosed to you, how nondisclosure influenced your development (school, social, family), and your opinions of being uninformed of your diagnosis. The results of this study are anticipated to support families and professionals facing the question of whether to disclose or not.

Will I Be Paid to Take Part in the Research?

Participants who chose to complete the semi-structured interview in-person at the University of Calgary will be provided a parking pass or reimbursement for transit costs. All participants will receive a $20 gift card for their time and participation, regardless of whether they complete the interview.

This University of Calgary Conjoint Faculties Research Ethics Board has approved this study (REB21-0037)

If you would like more information about the study or are interested in participating, please contact Brittany Lorentz at brittany.lorentz@ucalgary.ca or Dr. Adam McCrimmon at asert@ucalgary.ca