The Embracing Complexity coalition

Embracing Complexity is a coalition of 16 founding member charities, launched in 2019. Its inception was rooted in observations that people with different diagnostic statuses often share the same challenges in day-to-day life, that organisations supporting them do very similar work, and that it would be more productive to work together.

We launched the coalition in Parliament and published Embracing Complexity: Towards New Approaches for Supporting People with Neurodevelopmental Conditions. The report incorporated perspectives of over 500 people with lived experience and families.

The report found that:

• Over half of respondents did not feel accepted in society and did not know where to go for help.
• Nearly half of the individuals had not been offered information or support to help them understand what their diagnosis meant or how it might affect their life.
• 67 per cent had either been diagnosed with or believed themselves to have more than one 'condition'. 
• Understanding of lived experience of neurodivergent people and the best ways to improve outcomes is far too little. 
• There is an urgent need for research informed by the priorities of neurodivergent people. 

This report created a blueprint for the work of Embracing Complexity.

'Neurodivergent': Why do we use the term?

Embracing Complexity works predominantly with people whose neurodivergence overlaps with neurodevelopmental diagnostic categories such as Autism, ADHD, Developmental Language Disorder (DLD), Dyscalculia, Dyslexia, Dyspraxia, Foetal alcohol spectrum disorders (FASD), Learning Disability, and Tourette's.

Our research approach attempts to 'move away from pre-defined diagnostic labels' and towards the needs approach. Originally, we used the umbrella term 'people with neurodevelopmental conditions' to describe the group of people we support. However, the term 'condition' is rooted in clinical practice and recreates the boundaries of diagnostic categories.

The work of the Embracing Complexity coalition focuses on identifying barriers and effective ways of removing them, and we believe that the term 'neurodivergent people' is the most suitable term for our work. However, we recognise that different people have different preferences for terminology on an individual level.

Social exclusion of neurodivergent people

Research shows that neurodivergent people experience social inequality due to the ways in which society is structured and operates. This group of people face barriers in areas including employment, education, therapy and access to healthcare. Injustice faced by neurodivergent people is rooted in systems that were structured 'by and for neurotypical people' (Fletcher-Watson 2022).

The wide range of barriers faced by neurodivergent people presents a significant concern and points to an urgent need for research into effective ways of overcoming inequalities faced by this group of people. This is a motivation for the work of Embracing Complexity, and our aim for the next three years is to design and conduct research that will allow us to identify effective ways of removing those barriers.

Focus on research priorities

In autumn 2021, Embracing Complexity worked with Emerging Minds (a mental health network based at the University of Oxford) and the University of Warwick to develop Embracing Complexity in Research, a report exploring the priorities, barriers, and opportunities around research focusing on more than one condition at a time. As part of this, Suzi Sapiets completed a review of research priorities across neurodivergence.

Research priorities are topics or questions considered to be important to explore in research, usually established through priority setting activities (e.g., priority setting partnerships, Delphi technique, surveys, workshops) incorporating the perspectives of different people with knowledge and/or experience of the topic (e.g., people with lived experience, professionals, researchers).

Through internet searches and enquiries to researchers and organisations we identified 41 attempts to identify research priorities relevant to neurodivergence (i.e., research priority setting activities) each with a specific topic (e.g., autism, learning disabilities) and group/author (e.g., James Lind Alliance, Royal College of Speech and Language Therapists).

We then conducted qualitative analysis of all the priorities identified in the research priority setting activities. Through this process we identified seven key research priority areas across neurodivergence:

• Supporting neurodivergent people: physical health, speech and language, mental health, social, education, developmental or functional, sleep, behavioural, employment, psychoeducation, sensory, forensic, service provision, and other or general support.
• Understanding neurodivergence: exploring the experiences of neurodivergent people, their needs, daily life.
• Families or carers: supporting, understanding needs, collaboration.
• Professionals: knowledge, skills, practice, development.
• Recognition and identification: early signs, assessment, diagnosis, and service provision.
• Causes or prevalence.
• Wider community: awareness and understanding of neurodivergence, societal attitudes and perceptions.

Several of the research priority setting activities incorporated the perspectives of people with lived experience at varying levels, however, some were based solely on professionals' or researchers' perspectives. Due to the historical dominance of medical-model frameworks that pathologise neurodivergence, it is especially important for neurodivergent people to be involved in identifying research priorities.

The review also highlighted that while the most frequent research priority area was supporting neurodivergent people, most funded research on neurodivergence appears to focus on other topics (e.g., causes, genetics) – a mismatch between the research priorities identified and research being conducted.

Next steps

Our collaboration with Emerging Minds continued as we joined their Special Interest Research Group scheme through 2021 and 2022, bringing together researchers, professionals, and people with lived experience to explore mental health in neurodivergent children and young people.

We seek to prioritise inclusive research, which is 'characterized by the inclusion of neurodivergent people in empowered and meaningful roles' (Fletcher-Watson et al. 2021), and so have organised an Advisory Group, which consists of seven people with lived experience of neurodivergence, with different diagnostic statuses. We also seek to highlight how a siloed approach to developmental research doesn't address the complexity of neurodivergence. 

The ITAKOM Conference (March 2023) exemplified that bringing people together rather than dividing them by diagnostic category has a huge potential for inclusion and research. We are co-producing the Embracing Complexity research strategy, which will include a detailed plan of action for in-house and partnership research and will be derived from research priorities identified by the advisory group.

We hope to continue creating space for collaboration and that our work will contribute to promoting participatory research that crosses diagnostic boundaries, ultimately leading to the social inclusion of neurodivergent people.

About the authors

Agata Ostaszewska is a neurodivergent researcher with research interests in neurodivergence and social justice. Agata coordinates day-to-day activities and research of Embracing Complexity.

Dr Suzi Sapiets (she/her) is a neurodivergent Research Associate at the University of Kent with research interests in neurodivergence, particularly early years support, improving access to support and mental health, incorporating lived experience. Suzi completed a project with Embracing Complexity exploring barriers on opportunities in research spanning across neurodivergence and mental health.

Key sources

Aitken, D. & Fletcher-Watson, S. (2022). Neurodiversity-affirmative education: why and how? The Psychologist. December 2022.
Astle, D.E., Holmes, J., Kievit, R., Gathercole, S.E. (2022). The transdiagnostic revolution in neurodevelopmental disorders. Journal of Child Psychology and Psychiatry. 63(4), p97–417.
Bolton, M.J. (2023). On the Further De-Centering of Neuronormativity: Psychological Contact to Meet the Therapeutic Needs of Persons on the Autism Spectrum. 
Chapman, R. (2021). Negotiating the Neurodiversity Concept. Psychology Today. August 18.
Doyle, N. & McDowall, A. (2022). Diamond in the rough? An 'empty review' of research into 'neurodiversity' and a road map for developing the inclusion agenda. Equality, Diversity and Inclusion, 41(3), 352-382.
Embracing Complexity (2019). Embracing Complexity: Towards New Approaches for Supporting People with Neurodevelopmental Conditions Report. 
Embracing Complexity (2021). Embracing Complexity in Research Report.
Fletcher-Watson., S. (2022). Transdiagnostic research and the neurodiversity paradigm: commentary on the transdiagnostic revolution in neurodevelopment. Journal of Child Psychology and Psychiatry. 63(4), pp.418-420.
Fletcher-Watson, S., Brook, K., Murray, F. & Crompton, C.J. (2021). Inclusive Practices for Neurodevelopmental Research. Current Developmental Disorders Reports. 8., pp.88-97.