Mental health problems account for a quarter of all illness yet receive only six per cent of UK research funding, with personality disorders and autism being especially under-funded areas. We want to invest in more and higher quality mental health research to help improve people’s lives.
I-RAP – Research 2021-2024
Building on the work of the In Your Words Survey, and a further workshop in 2020 to consider the way forward, Words That Carry On (WTCO) launched an invitation for universities to bid for funding for research. The brief was “to investigate the overlap between the diagnoses of autism and personality disorder”. After tough competition from across the UK, WTCO awarded £80,000 to the City University London in October 2020 for their I-RAP proposal. The project, which will also support a PhD study, started in October 2021.
Take part in our ground-breaking new study and help us improve understanding and diagnosis:
Calling for volunteers! The I-RAP team are looking for volunteers to help them in two separate studies details below.
In Your Words Survey: Research 2018/2019
Words That Carry On wanted to identify the topics most urgently of interest to those affected by a personality disorder diagnosis and in the autistic community. So in 2018-19 we asked people from key stakeholder groups to rate nine topics from “vitally important” to “not important”.
The results – summarised below – suggested that we should prioritise research into diagnosis and its implications, particularly the diagnostic processes for autism and personality disorder. The full report, including a detailed analysis of the responses, is available here.
(I-RAP): Plain English Summary
“Improving Recognition, understanding and differentiation of Autism and Personality Disorder (I-RAP)”
Why are we doing this research?
People with lived experience and clinicians say that autism may be missed or misdiagnosed in some people diagnosed with personality disorder – particularly in people identifying as female – and this can cause serious harm through people being misunderstood, feeling unheard, and being offered inappropriate and inadequate support.
What will we do?
- We will first conduct in-depth interviews and assessments with women meeting diagnostic criteria or a personality disorder and autistic women, (female gender identity and/or identified female at birth) to explore their perspectives on: (1) Similarities and differences in lived emotional, behavioural, cognitive, identity and interpersonal experiences; (2) Limitations of current assessment tools in evaluating and distinguishing autistic traits in women diagnosed with a personality disorder; and 3) Facilitators and barriers to seeking and gaining a diagnosis of autism.
- We will use our findings to generate hypotheses about the best ways to assess and differentiate autism and personality disorder, and will test these in a third study.
How will we help improve care?
We will generate a set of key ‘dos and don’ts’ that clinicians can use when considering autism as an alternative or additional explanation for the experiences of a person currently diagnosed with a personality disorder.
We will identify a set of distinguishing features that clinicians can use to differentiate autism from personality disorder in women, as well as identifying shared features that are not useful for making this distinction.
We hope our findings will help clinicians better recognise, understand and support people diagnosed with a personality disorder who may be autistic, and support people experiencing personality disorder and/or autism to better understand and communicate their experiences.
City University 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.
Mental Health Act England and Wales: UK Government Consultation
As part of its review of the Mental Health Act England and Wales (MHA) the UK government published a “White Paper” in January 2021, containing its proposals for legislative changes. The White Paper responds among other things to “The Wessely Review” which was called to investigate the rising number of detentions and disproportionate detentions under the Mental Health Act of people from black and minority backgrounds. The remit of the review required that it look at “processes that are out of step with a modern mental health care system”. WTCO responded to the consultation stressing the need for full recognition and use of lived experience expertise in research, policy and practice and emphasising the need to fully fund mental health and social care provision in the UK.
You can read WTCO’s full response here: