Understanding Pathways from Environmental Risk to Internalising Problems for Autistic Young People

Autism is characterised by differences in social relating, communication, flexibility and sensory processing. Autistic people experience very high rates of mental health difficulties: they are at least three times more likely to have internalising difficulties (i.e., anxiety and/or depression) compared to non-autistic people. These mental health difficulties often become established in childhood and adolescence and can have devastating effects on autistic people's lives. Despite this, currently, effective treatments for the internalising problems of autistic people are lacking; and most have to struggle on without the help they need. To develop better interventions for autistic internalising problems, we need a much more comprehensive understanding of why they first develop, why they persist and what can help reduce them.

We aim to make new discoveries about what drives the development of internalising problems in autistic young people (AYP), thereby contributing new insights to inform prevention and treatment. We will focus on features of the social and physical environment, and how these contribute to AYP's internalising problems. We take this approach because: (i) it is highly likely that environmental factors, not just individual characteristics, influence autistic mental health, but research in this area has been lacking; (ii) it reflects the new, community-driven 'neurodiversity paradigm' that highlights the need to understand autistic lives in context; (iii) many potential environmental risk factors (e.g., parenting, school characteristics, noise) are amenable to modification, and so could become targets for future interventions to prevent or treat autistic internalising difficulties.

Our project has the following phases:

Phase 1 - Qualitative Study.
At the start of the project, we will interview AYP and parents of AYP to develop understanding, based on lived experience, of autistic internalising problems, generating ideas about their nature, course, causes, maintaining factors, mitigators and impacts.

Bridging Phase.
Towards the end of the Phase 1 study, we will hold a process of consultation and collaboration with AYP and other stakeholders (e.g., parents, autistic adults, clinicians, policy makers), so that our Phase 1 discoveries shape the rest of our project. This will involve researchers and stakeholders working together to derive focused research questions that can feasibly be addressed in the quantitative Phase 2 of the project. We already have a detailed plan for Phase 2, but the Bridging Phase will enhance and extend this.

Phase 2 - Quantitative Study.
We will conduct the largest-ever investigation of environmental influences on autistic mental health, using data from two UK birth cohort studies, the Millennium Cohort Study (MCS) and the Avon Longitudinal Study of Parents and Children (ALSPAC). In MCS and ALSPAC, we will investigate the trajectories of AYP's internalising problems and diverse environmental factors associated with better and worse outcomes. Our sophisticated analyses of longitudinal data will allow us to model processes that unfold over time to identify ways in which environments shape AYPs and, conversely, how AYPs shape their environment. We can also identify critical periods of risk and test for cascades, whereby an environmental factor influences development/behaviour in a way that subsequently influences internalising symptoms.

Crucial to our project is collaboration amongst researchers, AYP, autistic adults, parents and other stakeholders, to shape all elements of the research. To this end we will establish advisory panels (one of AYP, one of adult stakeholders) who will meet regularly; and we will also consult a wider community of autistic people throughout the project.

We will share our findings within and outside academia, via academic papers, conferences, blogs, social media and graphical materials co-produced with an artist and AYP.