Special Interest Research Group

11 May 2021

We want to bring together researchers, professionals and experts by experience to ensure that research really benefits those who think differently.

For children and young people with neurodevelopmental conditions, mental ill-health is the norm, not the exception.

Yet we still know little about preventing and treating mental health conditions in this group, who are frequently excluded from research.

Our new Special Interest Research Group (SIRG), Embracing Complexity in Neurodevelopmental Conditions and Mental Health, is bringing together people with neurodevelopmental conditions, carers, researchers and charities to address this gap and ensure that research really benefits those who think differently.

The SIRG is funded by Emerging Minds, a research network for children and young people's mental health based at University of Oxford.

Embracing Complexity SIRG Position Statement

Approximately 1 in 10 people think differently, with conditions like ADHD, autism, Down Syndrome, dyslexia, dyspraxia, foetal alcohol spectrum disorder, learning disability, Tourette Syndrome and many others. We call these neurodevelopmental conditions (NDCs), and define this as any lifelong condition, generally present from the early stages of life, which affects the brain and influences how people think, perceive the world or interact with others. These variations in the way we think are often also referred to as neurodiversity. We use “neurodevelopmental conditions” and “NDCs” as umbrella terms, but we acknowledge that different people within this group will use a wide number of terms to describe themselves, and we may use a range of terms to acknowledge different perspectives.

On average, people with NDCs experience poorer mental health outcomes than the rest of the population – in large part due to lack of support and a world not built to meet their needs. At the same time, they face additional barriers to accessing mental health services; for example, many assessment tools rely on verbal communication, and services are rarely commissioned or funded to provide specialist support to neurodivergent children. Too often, this group is directly or indirectly excluded from mental health research, or research is poorly disseminated beyond academia, leaving professionals and families guessing at how to provide effective support.

The Embracing Complexity Special Interest Research Group (SIRG) is funded by Emerging Minds, a children and young people’s mental health research network based at University of Oxford, to work towards chosen objectives around mental health in children and young people with NDCs. The potential scope for the SIRG is vast, and our time and budget are limited, so we need to focus on smaller-scale, achievable wins, such as improving how research is translated into clinical practice and communicated to families. We will aim to maximise the immediate impact we can create with the resources we have.

Our members bring a variety of experiences across a wide range of NDCs, and our strength is in working collaboratively rather than competing. Most people with NDCs have more than one, and we acknowledge that the silos that exist between work on different conditions cause many to fall through the cracks.

Collectively, people with NDCs constitute a very large group in society. The benefits of providing appropriate and effective mental health for this group are too great to ignore – not just for neurodivergent people and families, but for society as a whole.

More about the Embracing Complexity SIRG