“It Was a Completely Different Lens”: Autistic Adult and Parent Perceptions of Autistic-Led Autism Information Workshops

Abstract

Research shows that when autistic people mentor and share information about autism with other autistic individuals, it provides benefits. However, researchers are yet to determine whether parents of autistic children benefit from learning about autism directly from autistic people. Autistic people leading information workshops for parents of autistic children are an emerging practice. In this coproduced study, researchers used a mixed-methods approach to examine the perceptions of 12 parents of young autistic children and 7 autistic adults who participated in, or facilitated, three 2-hour autism information workshops. Quantitative survey results showed that parents were generally satisfied with the workshops, but some would have liked more time. The qualitative findings suggest that the workshops fostered a more positive narrative around autism. The workshops helped build connections both within and across groups for the autistic adults, the parents, and their autistic children. The workshop’s “cosy” nature helped participants to feel comfortable in sharing their experiences and questions. Participants expressed a preference or desire for a diverse range of facilitators. These results highlight the important role that autistic adults could play in supporting and sharing information with parents of young autistic children.

Community Brief

Why was this program developed?

It can be helpful for autistic people to provide support and information about autism to other autistic people. It might also be helpful for parents of autistic children to learn about autism directly from autistic people. We developed this program to explore the potential benefits of autistic-led workshops for parents of autistic children, as well as for the autistic individuals delivering the workshop. Research is needed to understand how such workshops can impact both groups.

What does this program do?

Autistic-led information workshops for parents of autistic children may improve parental understanding of neurodiversity and autistic people. These workshops provide a safe and open space where autistic people deliver content and share their personal experiences of being autistic. The workshops include a presentation about autism, opportunities for sharing experiences, and time for parents to engage directly with autistic facilitators.

How did the researchers evaluate the new program?

In this study, autistic and non-autistic researchers worked together to understand what people think about the workshops. Twelve parents of young autistic children participated as workshop attendees, and seven autistic adults participated as workshop facilitators. The research used surveys and interviews to gather feedback.

What were the early findings?

Parents and autistic adults generally liked the workshops, though some thought they were too short. They shared that the workshops helped parents to think more positively about autism. Autistic people and parents liked the connections that they made in the workshop and appreciated the “cosy” environment. They also cared about whether the autistic facilitators resembled the children of the parents attending the workshops.

What were the weaknesses of this project?

The study involved only 12 parents and 7 autistic adults. This means we don’t know if the findings are applicable to other autistic people and parents.

What are the next steps?

The next steps are to evaluate the workshops with more autistic adults and parents/families of autistic children. It would also be helpful to evaluate perceptions of workshops that are longer or a series of workshops.

How will this work help autistic adults now or in the future?

Our findings suggest that autistic adults liked delivering the workshops and that these workshops could be helpful for parents of autistic children. In the future, such workshops could become more widely available, empowering autistic adults to continue to share their knowledge and lived experience.