Abstract
Postdiagnostic support can be useful for any autistic person, but it may be especially important for young adults (16–25 years) who may be negotiating their autistic identity while also navigating the transition to adulthood. Yet there is a lack of tailored support for this group. In this study, we document the process of codesigning a six-session online peer support program aiming to support young people to navigate their autistic identity in the transition to adulthood. Through documenting discussions within our research team, we provide three key reflections underpinning the success of our codesign process as follows: (1) maximizing success through preparation; (2) facilitating effective, respectful communication; and (3) empowering meaningful collaboration. We also collected qualitative feedback from program attendees, which we analyzed using reflexive thematic analysis. This feedback highlighted how attendees appreciated the opportunity for self-discovery and to develop their understanding of autism. They also valued the social connections formed during the program. Finally, they said they benefited from the practical strategies they developed. Overall, these insights contribute to the growing body of knowledge on participatory autism research and highlight good practices when meaningfully involving autistic people in shaping the support programs that directly impact their lives. The peer support program, Understanding You, Discovering You, warrants further, more rigorous evaluation in future studies.
Community Brief
Why was this program developed?
It is important to design and test support groups that aim to improve the well-being of autistic young adults (ages 16–25) during the transition to adulthood.
If support groups are not codesigned, they are less likely to be considered acceptable by autistic people. By codesign, we mean different groups of people (e.g., autistic people, clinicians, researchers) working together to create something.
In this study, our team of autistic young adults, clinicians, researchers, and an autism charity representative codesigned a program to support autistic young adults during the transition to adulthood. The program was developed because a UK charity—Ambitious about Autism—identified that there was a need for specific support for autistic young adults.
What does the program do?
The program—called Understanding You, Discovering You—is designed to help autistic young adults embrace and understand their autistic identity. The program is designed to be delivered by two facilitators, one of whom is autistic, and includes up to 10 autistic young people at a time. Autistic young adults decided the content of the program, and how it was organized.
How did the researchers evaluate the development of the new program?
In this article, we report our team’s reflections about involving autistic young adults in the program’s design, to guide the creation of similar projects in the future. We also gathered initial feedback about the program from program attendees to understand their experience and learn how to make the program better in the future.
What were the early findings?
We identified the following three main things that were important when involving autistic young adults in the codesign of our program: good preparation, effective and respectful communication, and making sure the collaboration is meaningful. Program attendees reported that they liked learning about autism, found value in the social connections they made, and gained practical skills from the program. These findings tell us that codesigning programs with autistic people is a good way to make sure they are useful.
What were the weaknesses of this project?
One weakness of this project was that only a small number of people filled out our postprogram evaluation, which meant that we did not get as much feedback as we would have liked.
What are the next steps?
Our next steps will involve adjusting the program based on participant feedback before doing a larger and more rigorous evaluation of the program.
How will this work help autistic adults now or in the future?
This work provides a valuable example of how diverse teams (which include autistic young adults) can work collaboratively to codesign support programs for autistic people.
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