Study interrogating the overlaps in autism and personality disorder diagnoses in women wins funding

A ground breaking study examining why autism can be missed or misdiagnosed in women has been funded by the mental health research fund, Words that Carry On (WTCO).

The study will be carried out by academic and lived experience researchers from City University of London, Oxford University and University College London. It will deliver practical guidance for clinicians and service-users to help minimise the stress and trauma that can accompany inaccurate diagnoses.

WTCO was set up in 2018 by family and friends of Lindsay Riddoch, who took her own life after a long struggle with mental health problems. Working with the research charity, the McPin Foundation, WTCO has raised over £80,000 to fund research into autism and personality disorders.

Research looking at personality disorders and autism is critically underfunded. Personality disorder is a highly controversial and stigmatising label, with an estimated one in twenty five people living with this diagnosis. There is a growing body of research suggesting that autism may be much more common than previously thought in women, and often goes undetected.

“Receiving diagnostic explanations and treatments that don’t fit can be a damaging experience. By starting from building an understanding of similarities and differences in lived experiences, we hope our research will lead to improved recognition and differentiation of autism and the diagnosis of personality disorder.”   

Kirsten Barnicot, co-principal investigator from City University

The grant from WTCO requires that researchers use the expertise of individuals with lived experience of both diagnoses and that the work produces useful knowledge that can be implemented to improve people’s lives. Both people with a female gender identity and people assigned female gender at birth but identifying differently will be included in the research.

“I am thrilled to have this opportunity to co-lead the project as it is very relevant to my own lived experience. I hope that our research will shed light on a way of developing a new understanding of who we are through helping others to see beyond stereotypes and challenge engrained ways of thinking about diagnostic categories.”

Jennie Parker, co-principal investigator for the project

The research is due to start in October 2021 and will fund a PhD student.

Notes for editors

City, University of London is a global higher education institution committed to academic excellence, with a focus on business and the professions. Within City, the School of Health Sciences is actively engaged in internationally recognised research that has a direct impact on the provision of healthcare services today and in the future. Its aim is to build on research excellence that informs and improves learning, practice and policy on real-world issues in the health services sector and provide consultancy expertise to businesses and institutions from the public, private and third sector.

Words that Carry On: Lindsay’s Fund is a mental health research fund. It was set up in memory of Lindsay Riddoch, an ardent advocate for better mental health services intent on ensuring people who lived with mental health problems had their voices heard. She took her own life on the eve of her 25th birthday in 2017.

The McPin Foundation exists to transform mental health research by putting the lived experience of people affected by mental health problems at the heart of research methods and the research agenda. The McPin Foundation is a registered charity.

To speak to WTCO or to request an interview with one of the peer researchers, please contact Fiona Riddoch:

Artwork by Lindsay Riddoch