Championing research about, by and for neurodivergent people

Professor Edmund Songua-Barke
Editor-in-Chief of the Journal of Child Psychology and Psychiatry and Professor of Developmental Psychology, Psychiatry & Neuroscience at King's College London.

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How neurodiversity-inspired thinking is casting a new light on brain development research, with neurodivergent young people at its core.

People with autism and attention deficit hyperactivity disorder (ADHD) are more likely to develop depression during adolescence than their neurotypical peers.

Regulating Emotions – Strengthening Adolescent Resilience (RE-STAR) is a four-year research programme at King’s College London funded by UK Research and Innovation (UKRI) in which we are trying to figure out why this is the case. Our goal is to use our findings to develop new and innovative ways to cut the neurodivergence-depression link.

On another level, RE-STAR is building a different way of doing science about neurodivergence. Our work, to this end, is informed by the relatively recent emergence of the neurodiversity movement.

Neurodiversity perspectives cast a new light on autism and ADHD

Traditionally researchers have tended to think about autism and ADHD as discrete disorders resulting from brain dysfunction.

In RE-STAR we take a different approach inspired by neurodiversity thinking. This regards autism and ADHD simply as particular expressions of the remarkable variation in the way the human brain is built and operates. This means, in and of themselves, they are considered neither good or bad, impairing or beneficial.

This perspective acknowledges that these variations lead autistic people and those with ADHD to experience and respond to the world differently from neurotypical people. It recognises that these differences can create challenges. However, it explains these challenges in terms of the interplay between the individual and the constraints on them shaped by their everyday environment.

‘Nothing about us, without us’, is the neurodiversity movement’s battle cry. Adopting a neurodiversity perspective means taking the implications of this saying seriously. Shouldn’t the ideas, insights and experiences of neurodivergent people be placed at the heart of ADHD and autism research studies?

RE-STAR is exploring what all this means for our science.

Doing things differently

Our multidisciplinary and neurodiverse collective, has created a collaborative and performative space, combining creative and scientific approaches. In this space we are working together to build a different research vision.

Taking this stance is changing both the research questions we are asking and the way we are going about answering them. Crucially, it has refocused our science on systematically exploring why the same neurodivergent individuals struggle in some settings, while thriving in others. To do this we will investigate which characteristics of the person and their environment drive these differences.

From this perspective, the general practical goal of science becomes to identify or construct environments that maximise the potential of neurodivergent people – building their self-esteem, agency and resilience. RE-STAR’s specific goal will be to do this by developing a whole-school intervention to cut depression risk.

Neurodivergent young people at the heart

RE-STAR has also adopted a radical participatory approach to research inspired by the concept of co-intention. Neurodivergent people play an essential role, as co-investigators, at the heart of the research team.

This shift can be seen most obviously in the formation of our RE-STAR Youth Researcher Panels. These are made up of young people with diagnoses of ADHD, autism, or both. They have already contributed their insights, experience and skills to RE-STAR across the full range of its research tasks. These include collaborating in study design, measurement development, data gathering and analyses.

Creative practices have been especially important in facilitating the young people’s integration into our RE-STAR team. They are also at the forefront of the RE-STAR dissemination strategy, making presentations and headlining performances.

Improving life-chances for neurodivergent people

In the RE-STAR programme we are together creating a different way of doing neurodevelopmental science: science by and for neurodivergent people. This will continue to evolve and grow over the coming years of the programme. Although it has born many fruits already, the ultimate test will be whether our new approach can lead to improved life-chances for neurodivergent people.

Find out more

RE-STAR is funded by the UKRI adolescence, mental health and the developing mind (AMHDM) initiative.

RE-STAR’s vision was presented in the Salvesen Lecture 2022.

RE-STAR has recorded four episodes of its research diary podcasts in collaboration with Changing States of Mind podcast series.

Read how two other AMHDM-funded projects are aiming to improve children’s mental health.

Read summaries of all projects funded by the AMHDM programme.

The AMHDM initiative are currently recruiting a new programme director. Find out more at the UKRI careers portal.

Read about the latest MRC funding opportunity for mental health platform hubs.

This blog is kindly reproduce with permission from UK Research and Innovation

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