In the first of two blog posts by researchers from University College London, Reesha Zahir discusses the integral role of co-produced research questions in the Mental Health and Wellbeing of Autistic Young People (M-WAY) study.
In recent years, there has been growing recognition that autism research does not always align with the priorities and lived experiences of autistic people and their families.
For example, autism research funding has traditionally been heavily concentrated on genetic and biological research, despite repeated evidence that autistic people and their allies tend to prioritise research that could improve everyday life, such as better mental health support, education, services, and quality of life.
Trust has also been damaged by harmful theories that were later discredited, including claims that autism was caused by emotionally distant parenting or that autistic people are unable to experience empathy.
Against this backdrop, participatory and co-produced approaches have become increasingly recognised as a way of making research more relevant, meaningful, and impactful – both within autism research and beyond.
At their core, these approaches involve working collaboratively with communities when shaping research questions, methods, interpretation, and implementation of findings.
This helps address the traditional imbalance of power between researchers and the communities they study, while also improving the relevance and contextual understanding of research findings through direct engagement with lived experience.
Although participatory approaches are becoming more common in autism research, they remain relatively rare in the context of large longitudinal cohort studies.
While these datasets offer enormous scientific potential, there are ongoing questions about how analyses can be grounded in lived experience and community priorities.
Secondary data analysis can be viewed as inherently less flexible or collaborative because researchers are working with data that have already been collected.
Combining lived experience with cohort data: the M-WAY study
The Mental Health and Wellbeing in Autistic Young People (M-WAY) study at University College London was developed within the above context.
Led by principal investigator Prof. Will Mandy, alongside co-investigators Prof. Eirini Flouri, Dr. Emily Midouhas, and Dr. Kate Cooper, the project aims to better understand why autistic young people are at increased risk of mental health difficulties such as anxiety and depression.
From the outset, we recognised that answering questions like these requires more than simply analysing large datasets.
It requires understanding lived experience, working collaboratively with autistic people and families, and using data in ways that reflect the realities of everyday life.
We addressed this by bringing together three approaches, which helped to bridge the gap between theory, lived experience, and population-level data.
Step 1. Qualitative interviews
The project began with qualitative interviews with autistic young people and parents. Rather than only being guided by predefined hypotheses, we wanted to first understand how autistic people themselves made sense of mental health difficulties and what factors they felt were important.
Across interviews, participants described a wide range of environmental influences on mental health. Themes included experiences within schools, friendships and peer relationships, and family dynamics.
Importantly, these discussions provided nuance and context that are often difficult to capture using questionnaire measures alone.
For example, participants highlighted that social experiences are not simply about whether someone has friends or spends time socially, but about whether relationships feel safe, meaningful, and supportive.
Similarly, school experiences were described in ways that extended far beyond academic attainment.
This stage of the project helped us think more carefully about what existing cohort variables might actually represent in the context of autistic young people’s lives.
Step 2. The bridging phase: translating themes into research questions
The next stage involved working collaboratively with stakeholders including autistic young people, autistic adults, parents, and clinicians to prioritise findings and translate them into research questions that could be explored using cohort data. We called this ‘the bridging phase’ of the M-WAY project.
This process involved structured working groups where researchers and stakeholders discussed which themes felt most important, which questions were most relevant to the autistic community, and how these ideas could realistically be investigated using cohort data.
An important step in this process was to clearly communicate the types of variables and measures that were available to stakeholders. This facilitated a productive discussion about how well they captured lived experiences, how to analyse them, and what limitations should be considered when using them.
Many of the resulting research questions were different from the questions researchers may have generated independently.
One example discussed was that “playing alone” is treated as problematic behaviour in the peer difficulties subscale of the Strengths and Difficulties Questionnaire (a commonly used questionnaire measuring emotional and behavioural difficulties in children) even though some autistic children may simply prefer quieter or more independent play.
This led us to explore whether the questionnaire may capture peer difficulties differently in autistic and non-autistic children.
Step 3. Testing questions using cohort data and returning to lived experience
In the next stage, we applied these co-produced research questions to longitudinal cohort datasets, particularly the Millennium Cohort Study (MCS) and the Avon Longitudinal Study of Parents and Children (ALSPAC).
The first step was to develop hypotheses based on the research questions generated during the bridging phase.
We then identified the cohort variables that best captured these themes, while also taking into account the limitations and concerns raised by stakeholders during discussions.
For example, when exploring how peer relationships may influence mental health, we chose to include measures of friendship quality alongside friendship quantity.
This decision was shaped by discussions stakeholders highlighted that the size of friendship networks may be less important for autistic young people than whether friendships feel meaningful and supportive.
Lastly, we applied longitudinal analyses to test the hypotheses.
Importantly, the co-production process did not stop once analyses had been conducted. Findings were brought back to autistic stakeholders and advisory groups for discussion and interpretation. This has been one of the most valuable parts of the project.
In several cases, stakeholder discussions helped us better understand findings that did not initially make intuitive sense. This iterative process – moving between lived experience, quantitative analysis, and collaborative interpretation – has substantially strengthened both the quality and relevance of the work.
Looking ahead
The quantitative phase of M-WAY is still ongoing, and we continue to explore how environmental experiences shape mental health in autistic young people. Current and future work includes exploring trajectories of peer problems, family experiences, life events, and other social and environmental influences across development.
More broadly, we hope the project demonstrates how cohort datasets can become even more powerful when embedded within a broader interdisciplinary research process.
By combining qualitative insight, stakeholder collaboration, and longitudinal analysis, researchers may be better able to produce findings that are not only scientifically robust, but also meaningful to the communities they aim to serve.
In our next blog post, we will share findings from the M-WAY project and other autism research from our group, highlighting what longitudinal cohort studies can tell us about the experiences and wellbeing of autistic people across development.
Meet the author
Reesha Zahir is a Postdoctoral Research Fellow on the M-WAY project at University College London.
Her research interests include mental health, sleep, and developmental trajectories in autistic children and adolescents. She specialises in applying advanced longitudinal methods to population-based cohort data and has a strong interest in participatory research and co-production.
Connect with Reesha on BlueSky or LinkedIn.
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