Examining the Support Experiences of Autistic Young People with Multiple Marginalized Identities in the United Kingdom

Abstract

Background:

The challenges that autistic young people face when accessing support have been well documented. However, such issues may be exacerbated for autistic young people who have additional marginalized identities (e.g., being from a minority ethnic group or minority gender) compared with autistic young people who do not have additional marginalized identities.

Methods:

We took a participatory approach that included autistic young people with multiple marginalized identities at every stage of the research process. Our team interviewed 13 autistic young people (aged 16–25 years) who also identified with other marginalized identities. We analyzed the data using reflexive thematic analysis.

Results:

We generated one superordinate theme, which reflected how accessing support was perceived to be challenging for all autistic young people but especially so for this group with multiple marginalized identities. Within the superordinate theme, we generated three subthemes that provide examples of how common challenges were felt to be exacerbated for our participants. First, our participants reported difficulties in obtaining timely diagnoses, which hindered access to appropriate support services. Second, they expressed a sense of exclusion from existing support structures, with services often failing to address their unique needs. Finally, cultural and linguistic barriers meant that our participants’ parents and caregivers did not always know how to help them get support. As a result, some of our participants had to advocate for themselves.

Conclusion:

Our findings highlight the need for more inclusive and accessible support services that meet the diverse needs of all autistic young people, including those with multiple marginalized identities. Recommendations include offering a variety of support options to accommodate individual preferences and providing ways to empower all autistic people to advocate for their support needs.

Community Brief

Why is this an important issue?

Autistic people are a marginalized group in society. Accessing support—and especially the “right” support—can be hard for autistic young people. This experience might be particularly difficult for autistic young people who belong to more than one marginalized group (what we call having “multiple marginalized identities”). For example, an autistic person who is also part of a minority ethnic group might face additional barriers to getting the support they need, compared with an autistic person who is not part of a minority ethnic group.

What was the purpose of this study?

We wanted to understand how we can make sure support reaches autistic young people from as many different backgrounds as possible.

What did the researchers do?

Our team of autistic and non-autistic researchers interviewed 13 autistic young people (aged 16–25 years) who had multiple marginalized identities. We asked them about their experiences of trying to get support. We read through the interviews as a team and grouped similar responses together.

What were the results of the study?

Our participants felt that it was hard for all autistic people to get support, but that it might be especially hard for autistic young people with multiple marginalized identities to get support. For example, our participants told us that it took a particularly long time for them to get their diagnosis, which made it hard to get support. When they looked for support, they felt that there were no services made for people like them. Furthermore, their parents and other people around them did not always know how to help them get support because of cultural and language barriers.

What are potential weaknesses in the study?

We found participants through autism charities, which means that we might have missed those who do not access any support at all. We also could not look at all the possible ways that different parts of people’s identities might be marginalized. For example, we were unable to recruit anybody who had been in care or anybody with intellectual disabilities. Future research should try to explore these areas more, to better understand the challenges a wider group of autistic people face.

How will these findings help autistic adults now or in the future?

Our findings help to identify ways to make support more accessible to a wider group of autistic young people. For example, we think that it is important to offer different types of support (such as individual and group support, or face-to-face and online support) so that there are options that suit a broader range of autistic people. Our team thinks it is important for support services to make particular efforts to be inclusive, accessible, and welcoming to a wide range of people. We also think autistic people need to be supported to speak up for what they need, particularly if they do not have a parent or other advocate that is able to do this for them. If these recommendations are followed, we think that a broader range of autistic young people will be able to access support where needed.