There are an estimated 2.5 million neurodivergent adults in the UK who have not been diagnosed¹. This means millions of people are not able to access the self-understanding, community and support that can come with the right diagnosis.
Dr Blandine French is exploring the social and economic costs of undiagnosed autism and/or ADHD.
Diagnosis is just one step of the journey. This project aligns with our 2030 Goal to provide every autistic person with support from day one.
Why this project matters
Dr Blandine French and her colleagues estimate that roughly 2.5 million neurodivergent adults in the UK have not received a diagnosis¹. For many people, diagnosis can be a validating experience. It also allows people to access the support available to them. Research has found that adults with undiagnosed autism or ADHD are more likely to have mental health problems and negative life experiences such as unemployment.
This study will highlight the economic and social costs of undiagnosed autism and ADHD to give policymakers the information necessary to justify funding more diagnostic services.
The research process
Dr Blandine French, Dr Sarah Cassidy and Professor Martin Knapp are first gathering an overview of the risks associated with undiagnosed ADHD or autism and how these issues affect their everyday lives.
They will then run interviews with adults who are autistic, have ADHD or both, and run questionnaires to establish if the research reflects their real-life struggles.
Blandine and her team are also carrying out an economic evaluation of undiagnosed needs informed by personal accounts and previous research evidence. By exploring the economic costs of undiagnosed ADHD or autism, Blandine and her colleague’s work can make the case for policymakers to fund more diagnostic services. It will also help policymakers understand the levels of demand support services may face in the future.
The project is co-designed in collaboration with autistic and ADHD adults to shape the research across all project stages. This ensures the project priorities reflect the lived experience of autistic and or/ADHD people.
How this project is making more of a difference
This research aims to highlight the long-term economic and social costs associated with failing to properly diagnose and support neurodivergent adults.
By identifying potential risk factors, we can build a better understanding of what support might lead to better life outcomes that empower autistic and people with ADHD to thrive.
One of our 2030 Goals is to ensure autistic people receive the right support from day one. This project will help us to deliver on this by identifying what support is needed and the personal and economic costs of not providing support.
How we are involved
As a research partner, we are proud to support this project by:
- Contributing to workshops.
- Facilitating the engagement of stakeholders for co-production and the recruitment of participants using the Autistica Network.
- Sharing the study results with policymakers by making use of our connections in government and health services.
References
[1] The estimate of 2.5 million undiagnosed adults has been calculated by looking at papers exploring the estimated prevalence and expected diagnosis, including:
Sayal et al., (2018) ADHD in children and young people: prevalence, care pathways, and service provision