Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood

This research summary can be incorporated into a lecture or shared with students as a reading to demonstrate how psychological science explores the diversity of human experience. This resource can also be used to encourage students to identify the major components of a research study (i.e., the hypothesis or study question, sample, method, and findings). Students can be asked to identify potential limitations of the study and encouraged to discuss the implications for our understanding of human behavior. Keywords highlight how concepts within and across pillars are incorporated into a single research study.

This study explores the experiences and perspectives of adult women in the U.K. as they go through the process of getting diagnosed with autism. It aims to understand how this diagnosis affects their sense of self and identity, and the challenges they face during and after the diagnosis process. The sample for this study included six adult women from the U.K. who were in the process of seeking a formal autism diagnosis. The method used in the study was “participatory photovoice.” This innovative approach allowed the participants to use photography, artwork, or other media to capture and express their personal and unique experiences and feelings. After the participants described their story, they were interviewed by the researchers using questions that the researchers and participants developed together. Next, the researchers and participants worked together to identify and code themes in the responses. The study found that the process of seeking an autism diagnosis in adulthood significantly impacts the identity and self-perception of the women involved. The women faced many challenges, such as dealing with the medicalized approach of professionals (i.e., viewing autism as a disorder to be treated) and the scarcity of adequate support postdiagnosis. The findings emphasized the need for more inclusive and empathetic diagnostic practices, highlighted the ways that professionals should consider the emotional and identify impacts of receiving a diagnosis in adulthood, and underscored the importance of community support for autistic adults. These insights are crucial in understanding the complexities and emotional aspects of the autism diagnosis journey in adulthood. A limitation of the study is its small sample size, which may not fully represent the diversity of experiences among all adults seeking an autism diagnosis. Future research could expand on this by including a larger and more diverse group of participants to explore broader experiences and perspectives in the autism diagnosis process.

Cage, E., Botha, M., McDevitt, L., King, K. N., Biscoe, L., Tucker, K., & Pearson, A. (2024). Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood. Autism. https://doi.org/10.1177/13623613231220418opens in new window

Autism, Language, Prejudice, Discrimination, Culture, Neurodevelopmental, Stress, Social

The development of resources to broaden diversity and representation in the teaching of high school psychology resources is an APA Committee of Teachers of Psychology in Secondary Schools initiative supported by funding from the American Psychological Foundation David and Carol Myers Fund. This resource was developed by Kara Ayers, PhD; Emily Lund, PhD; Erika Sanborne; and Allison Shaver.