Introduction to this Emerging Minds funded cross sector placement with Embracing Complexity, led by Suzi Sapiets, PhD Researcher from University of Warwick:
Neurodevelopmental conditions affect up to 10% of the population and cover a huge range of conditions including autism, learning disability, speech, language and communication needs, ADHD, Tourette’s, dyslexia, dyspraxia, Down syndrome and many more. While it is common for people with neurodevelopmental conditions to have more than one, most systems, services and policies are set up to only look at one condition at a time. In practice, this siloed approach means many people with neurodevelopmental conditions and their families may not receive timely – or even appropriate – support. For example, there is significant overlap between autism, learning disability and epilepsy, and epilepsy is a leading cause of early death in autistic people with learning disabilities, a group who are often resistant to traditional epilepsy treatments. However, in a review of over 1400 global treatment trials for epilepsy, none had included autistic people. Those at greatest risk are typically excluded from research that could otherwise reduce those risks.
There is significant overlap between neurodevelopmental conditions and mental health. For example, research indicates people with neurodevelopmental conditions have an increased risk of experiencing mental health problems. While high rates of co-occurring mental health and neurodevelopmental conditions may be attributed to various factors, it is clear mental health is a challenge that spans across neurodevelopmental conditions. Therefore, it is imperative for research and practice to embrace complexity across neurodevelopmental conditions and mental health.
Led by autism charity Autistica, Embracing Complexity is a coalition of over 50 neurodevelopmental organisations acknowledging the overlap in neurodevelopmental disorders, working together to tackle key co-morbidities and improve diagnosis, services, and research across neurodevelopmental conditions. To date, the coalition have published two reports: Embracing Complexity: Towards New Approaches for Supporting People with Neurodevelopmental Conditions, a survey highlighting the barriers people with neurodevelopmental conditions face in diagnosis, services and research, and Embracing Complexity in Diagnosis, highlighting services which have implemented pathways to diagnose multiple neurodevelopmental conditions simultaneously.
Embracing Complexity in Neurodevelopmental Research
The purpose of this project is to explore barriers and opportunities in transdiagnostic research, with the aim of facilitating the completion of future transdiagnostic research spanning across neurodevelopmental conditions and mental health. To achieve this, we will:
Review the research priorities relevant to neurodevelopment and identify research questions which are of importance across multiple groups of people with neurodevelopmental conditions.
Identify barriers and enablers in transdiagnostic research through interviews with the research community and exploration of pre-existing research initiatives.
Identify a network of researchers and organisations interested in future research collaboration across neurodevelopment.
By identifying barriers and opportunities in transdiagnostic research and starting discussions with the research community, we can begin to tackle challenges to conducting research that span across neurodevelopmental conditions and mental health. Strengthening links across researchers, particularly those who specialise in different neurodevelopmental conditions, will enable more effective sharing of knowledge and best practice. Taking a strategic approach is likely to be key enabling research in this area, which will ultimately lead to better outcomes for people with neurodevelopmental conditions.
Now is the time to think differently.
If you are interested in finding out more about the project, please contact Suzi Sapiets Suzi.Sapiets@warwick.ac.uk.