Why autism research needs diversity

Over the past few months, the MWAY team have been speaking to autistic young people and their parents as part of Stage 1 of the study. We’ve been doing this to try and understand why so many autistic young people experience anxiety and depression and what helps. We’ve spoken to nearly 50 people so far. We’re aware that to better understand autistic people’s lives we need to make sure we hear about the experiences of people from different backgrounds, including those who are often left out of autism research. In this post, MWAY team member Sarah reflects on her experience of seeking out diverse voices in the MWAY study. We’re also joined by Leon Allain, an autistic researcher on one of our sister studies, the Autism Transition to Adulthood (ATAG) project who offers his views on navigating diversity within autism research.

Why is diversity important in autism research?

Leon: ‘Around 1 in 100 people are autistic and come from a variety of backgrounds. However, in research this is not always reflected in the participants that take part in studies. This poses an issue as it means that the results of studies may not reflect the broad experiences of autistic people, which in turn means that we can miss out on valuable insights. For example, in recent years, we have seen the impact that increased diagnosis of autism in women and girls has had on this group understanding themselves and their identities. It is important that we also consider how autism can present in the contexts of ethnicity, sexual orientation, and socio-economic background.’

Sarah: ‘Autism research has long neglected women and girls, those from ethnically minoritised backgrounds, the LGBTQ+ community and those from less affluent backgrounds. This means that we don’t know as much about what the lived experience of autistic people from these backgrounds is like. This is especially relevant for research into mental health (like the MWAY study) as belonging to a minority group can present additional challenges that influence wellbeing. For example, people from minority backgrounds often face discrimination (such as racism or homophobia), experience barriers to getting an autism diagnosis and have worse experiences of healthcare. Autistic people from these backgrounds face these difficulties in addition to the challenge of being autistic in a world that is not designed to meet autistic people’s needs. In the MWAY study we want to try and understand what anxiety and depression are like for autistic people of different backgrounds.’

What are some of the barriers to representing diverse voices in autism research?

Leon: ‘The practical challenges around EDI in research are multifaceted, however, ensuring that there is an awareness of research opportunities within different communities is the primary challenge. At present, the current recruitment channels that are used to recruit participants tend to attract those who already have a pre-existing interest in academic research or are knowledgeable/well-connected within the neurodiversity sphere. As a result, this means that it is difficult to recruit more diverse samples. The challenge once you have addressed the issue of diversifying recruitment samples and have participants willing to take part is the ability of people to commit to the studies. Depending on the nature of the study, participants may be expected to attend assessments and interviews before taking part in the study itself and it may be difficult to manage these expectations alongside work or educational commitments.’

Sarah: ‘The recruitment channels researchers use can exclude some groups of people, for example a lot of recruitment is done online and this can exclude those who do not have access to the internet for financial or other reasons. With MWAY, we’ve found that the main recruitment channels (i.e. recruiting through big autism organisations online) have mostly reached white, affluent families. In addition, we’ve found that smaller groups that support more diverse families often have very limited resources and capacity to support research.

Trust can also be a big barrier. Autism research has historically overlooked the voices of marginalised communities and has often failed to consider the priorities of the autistic community as a whole. Understandably, those from minoritised backgrounds don’t always trust that researchers will have their best interests in mind and can feel uneasy about taking part. For those who do want to take part, research studies can involve a substantial time commitment and those from marginalised groups – who face more stressors in their daily lives - may be in less of a position to give their time and energy. So even when we reach people from diverse backgrounds there are further ways in which we’re not making research as inclusive as it could be.'

What are some potential solutions to these barriers?

Leon: ‘Diversifying research samples will require us to make changes to the way we recruit and thinking how we could promote studies in different ways and places. In May 2024 Dr Annabel Burnley and I from the ATAG study were invited to speak to members of the Swindon Parent Carer Forum at an Autism and ADHD research event organised by the NIHR. It was fantastic to be able to engage with those who attended and present them with the opportunity to participate in research, which many were receptive of. Events like this are essential for building trust with different community groups, as it enables us to know how best to approach the recruitment process and what we can do to increase the chances of getting people to participate in research studies.’

Sarah: ‘In the MWAY study, we’ve tried a number of approaches to overcoming these barriers:

• To build trust, we’ve worked with autistic young people and parents to make sure the information about the study is clear and accessible, explains the positive impact we hope the research will have on autistic people’s lives, and uses inclusive and neurodiversity-affirming language. The information we use to advertise the study also highlights that we especially would like to hear from those who belong to groups often left out of autism research.
• To increase inclusivity of the interview methods, we’ve invited people to take part in flexible ways that work best for them (e.g. email, messages, phone, video call, creative methods such as drawings and photographs.
• We have worked with our stakeholder panels (including autistic young people and adults) to make connections with support groups with diverse membership and with community leaders. We’ve made connections with organisations based in especially diverse areas of the UK and groups aimed at supporting those from ethnically and culturally diverse backgrounds. We haven’t always found it easy to make these connections. Groups with limited resources, for example, may not have the capacity to support research and groups may not trust that researchers have their community’s best interests at heart. We’ve been grateful to members of our panels for helping us bridge some of these gaps and make connections.

What’s next for MWAY?

We’re about to start the next step of the study, in which we’ll work with our panels of autistic young and adult stakeholders to decide the important questions to focus on in the next (quantitative) stage of the study. Keep following this blog to hear all about how it goes!