Davies, J., Islaam, L., Carter, S., Redmayne, B., Cooper, K., Mandy, W., & Crane, L. (2024).
Autism in Adulthood. https://doi.org/10.1089/aut.2024.0059
Some groups are pushed towards the edges of society where they have fewer opportunities and less power. These are people with marginalised identities, which can come from being part of a minority ethnic group, facing cultural and linguistic barriers, or being autistic. When people belong to more than one of these groups, they have “multiple marginalised identities”. In this case, the different challenges they face combine and make things even harder, leading to even more exclusion and less opportunity.
We know that autistic people are marginalised in the UK, and often do not have access to good support. Having multiple marginalised identities makes finding the “right” support even harder. This is true for women and girls, those from racial and ethnic minority groups, those from immigrant families, those in poverty, and those with other diagnoses.
This study asked:
Can autistic young people with multiple marginalised identities access support, and does it meet their needs? How does having multiple marginalised identities affect experiences of getting support?
This study explored ways to make support accessible to autistic young people from different backgrounds. It used a participatory research approach, where autistic and non-autistic people worked together. The team worked together to make decisions at every step of the process, including designing the study, doing the interviews, and deciding what the findings mean. To support researchers with less research experience, experienced researchers led training about doing interviews, and analysing interview data.
In total, 13 autistic young people with multiple marginalised identities were interviewed. 11 lived in low-income houses, 8 were LGBTQ+, 6 were non-white, 6 had a co-occurring disability, 3 were from a minority gender, 3 from a rural area, 2 from a minority faith, and 1 from an immigrant family. All of the participants had at least three marginalised identities. Identities are not exclusive!
“The journey to getting support is hard, but it’s especially hard for us.”
The participants talked about the general challenges that autistic people face when accessing support. They also talked about how this was especially hard if you have multiple marginalised identities. This came across in three ways:
- Delayed autism diagnosis
- Difficulties finding the ‘right’ support
- Unequal access to a key ‘champion’
They said support is too often targeted at young children, and a later diagnosis doesn’t come with many – if any – services. Community groups are often closed because of funding problems. Instead, informal support is found online, or in-person at colleges and universities.
Delayed autism diagnosis.
Participants talked about parents not knowing what autism is, or autism going unrecognised at school or home because they didn’t fit people’s expectations of what autism ‘looks’ like. This experience limited support options.
Difficulty in finding the ‘right’ support.
Finding support in rural areas is hard. Money worries make it a struggle to attend. Multiple marginalisation causes things to be harder if your community does not think well of disability. Finding other autistic people who “‘look like me” can be hard and is lonely. But when it works – like in support groups – “You feel heard”.
Unequal access to a key ‘champion’.
Not all participants had somebody who could advocate for them. They often felt that they had been left to find their own help.
What does this mean?
Support should be flexible to meet the needs of diverse autistic people, rather than following a “one-size-fits-all” approach. This means providing a range of support, including diverse support groups for all, and some support groups for specific sub-groups (like women or people from a particular cultural background). Some groups aren’t the right fit for everyone, especially for those who are new to speaking about being autistic. For them, other forms of support, like self-directed resources, may be more important.
Some parents may face barriers in advocating for their children because of language or cultural stigma, so we need support systems that do not rely on parents having to fight for the help their children need.
Practitioners must also make an effort to learn about the diverse cultures of the people they work with. This means exchanging knowledge, and adopting ‘cultural humility’ – the understanding that they might not have all the answers.
This work formed part of a broader project on post-diagnostic support for autistic young people, which can be accessed online: https://discovery.ucl.ac.uk/id/eprint/10178344/8/ambitious-about-autism-post-diagnosis-research-report.pdf