The forgotten half million: New methods for mapping mental health outcomes of adults with Autism Spectrum Conditions in the UK.

Lead Research Organisation: Coventry University
Department Name: Ctr for Psychology, Behaviour & Achieve

Abstract

Autism Spectrum Conditions (ASC) are a diverse group of developmental brain conditions that cause difficulties in communication, social interaction, unusually narrow interests and difficulties adapting to change. One in 100 people (700,000 in the UK) have an ASC, most of whom are adults. A majority of the total economic cost of ASC to the UK is spent on supporting adults (£25 billion out of a total of £28 billion), with 36% of this cost attributable to lost employment opportunities (Knapp et al. 2009). The individual and social costs of ASC in adulthood are also high, with research showing poor outcomes in terms of educational attainment, unemployment (Howlin, 2000), and high rates of depression (32%), suicidal thoughts (66%) and suicidal behaviours (35%) (Cassidy et al. 2014).

The latest reports from the ESRC Centre for Economic Performance, and the Chief Medical Officer, describe the high individual, social and economic costs of leaving mental health problems such as depression untreated. However, there are no valid measures of depression or suicide risk for adults with ASC, despite evidence that these are common problems (Cassidy et al. 2014; Segers and Rawana, 2014). Measures for typically developing adults are not appropriate for adults with ASC, who tend to interpret questions literally (Happe et al. 1995), and have difficulty verbalising their emotional experiences (Bird et al. 2010). Depression and suicidality also manifest differently in ASC; inflexible thinking and impulsivity may increase risk (Cassidy et al. 2014). In addition to lack of appropriate measures, research progress is also hampered by the lack of a data set that includes enough adults with ASC to effectively evaluate their rates of depression and suicidality on a national scale; the UK adult psychiatric morbidity survey (2007) only included 19 adults with ASC.

The lack of research and appropriate measures have had a profoundly negative impact on adults with ASC; 1) it is not possible toonduct detailed research into the nature, risk or protective factors for depression or suicidality in adults with ASC; 2) it is not possible to effectively assess their depression or suicide risk in clinical practice; 3) without the knowledge base or assessment tools, new theories and effective evidence based treatments cannot be developed or evaluated; 4) we cannot effectively evaluate the prevalence of depression or suicidality on a national scale, in order to inform effective government policy. Hence, adults with ASC are not currently able to access evidence based assessment or therapies for depression or suicidality, despite being at potentially high risk.

This research project will address these fundamental issues by developing the first empirically validated measures of depression and suicidality for adults with ASC, for use in a national survey. This will form the first nationally representative dataset containing rates of depression and suicidality in adults with ASC in the UK, made available for secondary analysis. These objectives will be achieved by creating synergy between psychiatrists and clinicians involved in ageing, autism, suicide, mental health and risk assessment research, across internationally recognized institutions (Universities of Coventry, Newcastle, and Cambridge).

This research will build on my previously published research, which has utilized big data to explore the health and behaviour of adults with ASC, including the first large-scale clinic study of depression and suicidality in adults with late diagnosis of Asperger Syndrome (a high functioning subgroup on the autism spectrum) (Cassidy et al., 2014). This project will enable me to foster a new inter-disciplinary mixed-methods approach to the study of mental health in ASC, which I will continue to lead beyond the funding period.

Planned Impact

This project seeks to join traditionally separate disciplines, to develop new methods for diagnosing depression and suicidality in adults with Autism Spectrum Conditions (ASC), and improve their access to psychological therapies. I have performed a stakeholder analysis, and from this identified the following primary beneficiaries of this research:

1) Academic Community: This research will foster new interdisciplinary collaboration and mixed-methods, applying the study of mental health, suicide, risk assessment, and measurement development, to the case of atypical development (adults with ASC). This will open up a whole new line of research into mental health in ASC and other developmental conditions, encouraging application of theory and methods between previously distinct disciplines. Impact will be achieved through publishing this seminal research in world leading journals, and vigorous knowledge exchange activities with the international research community. Timescale: Years 1-3+.

2) Clinicians: There are currently no valid assessment tools, NHS guidelines or theories of how mental health problems and suicidal thoughts or behaviours can manifest in those with developmental conditions such as ASC. Hence clinicians can struggle to assess, support and treat individuals with ASC presenting with depression, suicidal thoughts or behaviours in GPs surgeries, or specialist mental health, learning disability, or autism diagnostic settings. Providing the first empirically validated measures of depression and suicidality for adults with ASC will benefit clinicians on the front line, attempting to make appropriate referrals, diagnose depression and gauge suicide risk in these individuals. Impact will be achieved through; 1) high-quality publications in general medical journals; 2) knowledge transfer activities with clinicians, to translate the results of the research into guidelines for GPs to assess depression and suicide risk in adults with ASC; and 3) provision of online courses about the presentation and assessment of depression and suicide risk in adults with ASC. Timescale: Years 1-3+

3) Wider Public: Given the high individual, social and economic costs of ASC, and the fact that ASC are no longer considered rare - with prevalence rates steadily rising in the world - public awareness and concern about ASC are increasing. This project aims to maximize its outreach to individuals with ASC, their families and the general public. Impact will be achieved through bi-yearly newsletters disseminated to over 30,000 participants registered in the autism research databases at Universities of Newcastle and Cambridge, and UK autism support groups. An event will also be hosted at Coventry University, to engage adults with ASC and their families in discussions with researchers and clinicians about translating the results of research into effective support and practice, and to influence the direction of future research in this new and important area. Timescale: Years 1-3+.

4) ASC Charities: Charities are at the front line of providing information and support to adults with ASC, professionals, families, and lobbying policy makers. This project will benefit the work of charities, by providing the first evidence based information on an important, commonly experienced, but at the same time under-researched aspect of ASC; depression and suicidality. This research will also uncover the scale and urgency of the problem on a national scale for the first time, providing the necessary evidence for charities to effectively influence UK policymakers to reduce the high individual, social and economic costs of ASC in adulthood. Impact will be achieved by including leading UK charity representatives in the outreach event at Coventry, discussing the translation of the research into practice. An annual report will also be sent to leading ASC charities in the UK. Timescale: Years 2-3+.

Publications


10 25 50
 
Description Autistica Research Grant
Amount £87,000 (GBP)
Organisation Autistica 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 05/2017 
End 01/2019
 
Description Autistica Small Grant
Amount £18,950 (GBP)
Organisation Autistica 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 02/2017 
End 07/2017
 
Description Coventry University Pump Prime
Amount £9,800 (GBP)
Organisation Coventry University 
Sector Academic/University
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 01/2016 
End 07/2016
 
Description NIHR-CLAHRC Development Grant
Amount £50,000 (GBP)
Organisation National Institute for Health Research (NIHR) 
Sector Public
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 03/2016 
End 06/2017
 
Description Autism Mortality Review 
Organisation University of Cambridge
Department Functional Inorganics and Hybrid Materials Group
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Academic/University 
PI Contribution The research team have agreed to take part in a multi-centre study, linked to the current ESRC award. Specifically, we are analysing coroners records ruling a suicide for evidence of autism, to explore whether autism diagnoses are over-represented in people who died by suicide in the UK. This complements the ESRC grant which aims to develop assessment tools to effectively assess depression and suicide risk for adults with autism, and gauge prevalence of these difficulties in the UK. The PI (Cassidy) and her research assistant are providing expertise and intellectual input to the project (i.e. designing the study, analysis and interpretation of results for publication), and monitoring/training of staff working on the project at the University of Cambridge.
Collaborator Contribution The Cambridge team are contributing the time of their staff, expertise and data to the project.
Impact We have obtained funding for this research and to generate impact from it: 1) NIHR-CLAHRC development grant (£50,000); and 2) Coventry University pump prime (£9,800); 3) Autistica (£87,000) to collect further data from interviewing next of kin of those who died. We will be holding a stakeholder event in June 2017 to gather key stakeholders (charities, coroners, researchers, clinicians and bereaved relatives), to discuss how the results of the research could be translated into practice. The project is still ongoing, hence no publications are yet available. However, an abstract outlining preliminary findings has been accepted for presentation at the International Meeting for Autism Research 2017. The collaboration is multi-disciplinary: Psychology, Autism Research, Suicidology, Clinical Psychology.
Start Year 2016
 
Description Autistica 
Organisation Autistica
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Charity/Non Profit 
PI Contribution We have contributed our expertise generated from the ESRC funded research to support the lobbying work of the leading autism research charity Autistica, aiming to prevent death by suicide in people with autism.
Collaborator Contribution Autistica have contributed their time, expertise and contacts to lobby for more research funding, new government policy and improved services and clinical practise to prevent death by suicide in people with autism. This has included funding to our research group to run an international impact event, to identify future priorities for research, policy and practice to tackle suicide risk in autism.
Impact A policy briefing co-authored with the research group about tackling the crisis of early death in autism. A presentation at the National Suicide Prevention Alliance about preventing suicide in autism, between Autistica and the research team, raising awareness of the ESRC funded research to key charities and policy makers in suicide prevention. Funding (£18,950) for the research team to lead an international impact event to identify future priorities for research, policy and practice to tackle suicide risk in autism.
Start Year 2016
 
Description Newcastle 
Organisation Newcastle University
Department Northern Institute for Cancer Research Newcastle
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Academic/University 
PI Contribution Our team have contributed our time and expertise to the collaborative project.
Collaborator Contribution Newcastle University have provided their time and expertise in the form of mentoring and training for the PI of the current funded project, and access to data and volunteers in the largest UK research database of adults with autism. This database will be used in the final stage of the ESRC funded project to pilot the new assessment tools, and gauge prevalence of mental health problems of adults with autism in the UK. The PI has also been given opportunity to diversify her academic output by leading on secondary analysis of data within the database held at Newcastle University. Newcastle University have also continued to support the PIs career development by growing her international network of contacts with researchers and clinicians in the UK and overseas through: a) hosting two research visits from the PI a year to undertake training and foster new and existing connections with researchers and clinicians; b) building a connection with the research charity Autistica; and c) supported the PI to apply for two further applications for funding for an international impact event, and research project linked to the ESRC project.
Impact Two successful grant applications from the leading autism research charity Autistica have resulted from this collaboration: a) to run an international suicidality in autism summit aiming to identify future priorities for research, policy and practice tackling suicide in autism; and b) the first psychological autopsy study to identify the rate of autism in those who died and identify targets for suicide prevention in this group. This will allow the PI (Cassidy) to lead the development of mental health and suicide in autism research internationally, and increase the impact of the current ESRC funded research project. This collaboration has resulted in two Special Interest Groups (SIGs) accepted to the International Meeting for Autism Research in 2016 and 2017, discussing future research priorities for suicide in autism research. SIGs offer opportunity to develop under-investigated areas in autism research, and only 20% of SIG applications are accepted to the conference each year. This collaboration has also led to the PI (Cassidy) being invited to attend and present at the ESRC funded seminar series: Shaping Autism Research UK. This has grown her network of contacts with charities, academics, clinicians and autistic adults, and increased the impact and awareness of her research. The collaboration is multi-disciplinary, including autism, mental health research and clinical psychology.
Start Year 2016
 
Description Adults with Autism Steering Group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact We have convened a steering group of 8 adults with autism who have experienced mental health problems and/or suicidality, to guide our research from start to finish, and maximise its impact. The group have helped diversify our academic output from the project, by co-designed a suicidality survey with the research team to explore risk and protective factors for mental health problems and suicidality in autism, and explore the psychometric properties of existing gold standard measures of suicide risk in autistic adults. They have fed back on the suitability and relevance of current gold standard measures of mental health, ensured that our ethical approach is acceptable to adults with autism, and developed tools for practitioners to better assess mental health problems in adults with autism (e.g. a suicide safety plan, and guidelines for GPs, and training materials for practitioners). They have also contributed to a video series highlighting "What do you want your GP to know?", with regard to assessing and supporting adults with autism who experience mental health problems and suicide risk. This has been disseminated to charities and practitioners, and used to deliver training to practitioners. The impact of participating in the steering group has been extremely positive for participants, who have reported getting more involved in campaigning for better awareness and support for autistic people, and having increased confidence to seek and retain employment.
Year(s) Of Engagement Activity 2016,2017
URL http://mhautism.coventry.ac.uk
 
Description MHAutism Stakeholder Event Year 1 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A half day workshop at Coventry University led by the PI convened 40 stakeholders (practitioners, charities, academics, people with autism and their families). The event updated delegates on progress with the project, and discussed: a) how best to adapt mental health assessments for autistic adults; and b) how to improve assessment of mental health problems in autistic adults in clinical practice. The event generated a lot of discussion, and the outputs from this have been published online as google doc, so that others who could not attend the event have an opportunity to edit and add to the document. The outcomes from this shall be further developed at a Special Interest Group at the International Meeting for Autism Research (May 2017), and at an International Summit funded by Autistica (May 2017). These outcomes will be used by charities (Autistica, NAS) to lobby policy makers, funders and service providers to improve assessment and support to reduce mental health problems and suicide risk in autistic people.
Year(s) Of Engagement Activity 2017
URL http://mhautism.coventry.ac.uk
 
Description Mental Health Champion Videos 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact We have recruited 6 mental health champions - adults with autism who have experienced mental health problems and/or suicidality - to help us raise awareness of the ESRC funded research project, and to campaign to improve assessment and support for autistic adults who experience these difficulties. Our mental health champions co-designed an awareness raising campaign and resources with us entitled: "what would you like your GP to know?" with regard to assessing and supporting adults with autism who experience mental health problems and/or suicidality, as the GP is the first point of contact in referring a person for further assessment and/or support. The resources consisted of video taped interviews available on our project website, twitter feed (currently 520 followers), and disseminated by our collaborators, NIHR-CLARHC national newsletter, and at the impact events we have participated in so far. We have received excellent positive feedback from these videos, including those who have used these in their training of service providers to better support those with autism.
Year(s) Of Engagement Activity 2016,2017
URL http://mhautism.coventry.ac.uk/champion-videos/
 
Description National Association for Suicide Prevention Conference 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The PI (Cassidy) ran a workshop to raise awareness of suicide in autism, and provide training to practitioners on how to assess mental health and suicide risk in adults with autism, based on findings from the current ESRC funded research. There was a great deal of interest in the current research from a wide range of charities, practitioners and policy makers, who requested further information about the project, to be kept apprised of updates, offers of help in the PIs research, and requests for the PI to offer further training to their colleagues.
Year(s) Of Engagement Activity 2017
URL http://www.nspa.org.uk/home/news-events/nspa-conference-2017/
 
Description Newsletter and Tools 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact We published a newsletter updating a variety of stakeholders on the progress of our research project, posted on our website. We also published a variety of resources linked to this: recommendations for GPs to help assess and support autistic adults experiencing mental health problems and/or suicide risk, and suicide safety plans adapted for adults with autism and those supporting them. These resources were developed in partnership with the autism community through a series of focus groups and video taped case study interviews, also posted on our website, and disseminated through conferences, impact events, twitter feed (currently 520 followers), and NIHR-CLARHC national newsletter.
Year(s) Of Engagement Activity 2016,2017
URL http://mhautism.coventry.ac.uk
 
Description Policy Briefing - Crisis of Early Death in Autism 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact I was invited by the leading autism research charity Autistica to contribute to a policy briefing and press conference, drawing attention to premature mortality in autism, one of the leading causes of which is by suicide. I co-authored the policy briefing, presented the issues to the press at a conference, and attended an event at Westminster to discuss how to tackle suicide in autism with MPs. The campaign resulted in massive media coverage, and increase in awareness among the public, policy makers and clinicians.
Year(s) Of Engagement Activity 2016
URL https://www.autistica.org.uk/wp-content/uploads/2016/03/Personal-tragedies-public-crisis.pdf
 
Description Project Press Release 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Media (as a channel to the public)
Results and Impact A press release was disseminated at the start of the project about the work being undertaken. The press release was taken up in local news, online and in print. The research team received enquiries about the research, stories from people who had experienced mental health problems, or who had tragically lost a loved one to suicide. Many of these individuals have agreed to received additional updates from the project, and/or to participate in the research.
Year(s) Of Engagement Activity 2016
 
Description Project Website and Social Media Feeds 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact We have set up a project website, twitter feed and face book page. Our twitter feed has 520 followers so far. We use these channels frequently to send out resources to a wide variety of stakeholders and keep people up to date on the progress of our project. For example, our GP recommendations are mental health champion videos were re-tweeted by many leading researchers and charities in the field, and seen by thousands of people. Some of these stakeholders have got in touch with us to give us positive feedback on how useful our resources have been to them when seeing their GP, and in delivering training on mental health in autism to other professionals.
Year(s) Of Engagement Activity 2016,2017
URL http://mhautism.coventry.ac.uk
 
Description Shaping Autism Research UK, ESRC Seminar: "Autistic Wellbeing" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact The PI (Cassidy) presented results from the current project, and took part in a panel discussion regarding how best to measure autistic wellbeing. A variety of stakeholders were present, including charities, practitioners, autistic adults and their families. Outcomes from the ESRC funded seminar series will be used to make recommendations to shape future research, policy and practice.
Year(s) Of Engagement Activity 2017
URL http://www.shapingautismresearch.co.uk