Building Mental Health Care for Autistic People: What Works? Mental Health Question Time

Public understanding of neurodiversity has markedly improved over recent years, with an increasing number of positive stories and role models appearing in the mainstream media. Nevertheless, there is currently an autism mental health crisis, characterised by the following paradox: autistic people have a high probability of developing a mental health problem, but a low probability of receiving effective help. 

This public engagement event, led by researchers from the Division of Psychiatry in collaboration with the Mental Elf blogger, Lancet Psychiatry, the Division of Psychology and Language Sciences and the NIHR Policy Research Unit in Mental Health focused on how to enhance care provided for autistic people experiencing mental health problems.  

Limitations to autistic mental health care include: 

• a lack of resources, meaning that requisite services lack capacity or simply do not exist 
•  barriers to accessing relevant services, due to them not adapting to accommodate autistic patients 
• the lack of a relevant evidence base to guide prevention and treatment. 

This cross-disciplinary Mental Health Question Time event brought together an expert panel of people with lived experience, clinicians, practitioners, researchers and policymakers, to set forward a vision for mental health care for autistic people, as well as discussing the latest findings of the NIHR Policy Research Unit in Mental Health reviews in this area. An audience of 200 delegates included researchers from across UCL and beyond, practitioners and members of the public, often with relevant lived experience attended this public engagement event, which was also livestreamed and disseminated via Youtube.  

The panel consisted of: 

• Chair: Prof William Mandy Professor of Neurodevelopmental Conditions, Division of Psychology and Language Sciences, University College London 
• Dr James Cusack, Chief Executive of the charity Autistica 
• Professor Dheeraj Rai, Professor of Neurodevelopmental Psychiatry, Bristol Medical School (PHS) 
• Dr Eloise Stark, Postdoctoral Researcher and trainee clinical psychologist, University of Oxford 
• Amanda Timmerman, MPhil/PhD student, University College London 
• Tamara Pemovska, Research Fellow, Division of Psychiatry, University College London 
• Dr Georgia Pavlopoulou, Associate Professor, Division of Psychology and Language Sciences. University College London 

YouTube Widget Placeholderhttps://www.youtube.com/watch?v=JZ6PQkAs-ao

Prevention: the origins of autistic distress and the factors exacerbating mental health difficulties among autistic people need to be better understood to design strategies for prevention. Understanding the negative consequences of masking may contribute to this. 

Implementation: Simple strategies with obvious potential to improve mental health care need to be implemented, with autistic people the experts on their own needs. Strategies include adjustments to communication and environment, as well as the education of professionals to ensure understanding of autistic people's self-management strategies. 

New evidence: it cannot be assumed that pharmacological or psychosocial interventions that are effective in general will have the same impacts on autistic people. A more substantial body of research is required, using routine data to understand outcomes in practice and trials to understand substantial innovations. Currently, limited evidence suggests that adapted interventions are often effective, but the benefits over standard interventions are not yet clear. 

Benefits of the event impacted UCL colleagues as well as partner organisations and included the reinforcement of cross-disciplinary partnerships through people from different disciplinary backgrounds working together on this event, helping the team to refine and develop the research programme, informed by event discussions. The event also provided: 

• An opportunity for several early career researchers to gain experience of organising and delivering a public engagement event, including working with people with relevant lived experience. 
• A space to share and disseminate recent interdisciplinary reviews on mental health care for autistic people, led by the NIHR Policy Research Unit in Mental Health and involving staff and students in the Division of Psychiatry and the Division of Psychology and Language Sciences. 
• The opportunity to develop new, and reinforce existing connections with external partners.  

As a result of the event, further cross-disciplinary bids on projects related to improving mental health care for autistic people, and focused on public engagement are likely to be developed. The researchers were also able to discuss the latest findings of the NIHR Policy Research Unit in Mental Health review. The discussions would help inform the research programme going forward.