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

Lead Research Organisation: University of Nottingham
Department Name: Sch of Psychology

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 to conduct 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
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Au-Yeung SK (2019) Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults. in Autism : the international journal of research and practice

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Cassidy S (2020) An Expert Discussion on Autism in the COVID-19 Pandemic in Autism in Adulthood

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Cassidy SA (2018) Measurement properties of tools used to assess depression in adults with and without autism spectrum conditions: A systematic review. in Autism research : official journal of the International Society for Autism Research

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Cassidy SA (2020) Advancing Our Understanding of Self-harm, Suicidal Thoughts and Behaviours in Autism. in Journal of autism and developmental disorders

Related Projects

Project Reference Relationship Related To Start End Award Value
ES/N000501/1 04/01/2016 29/10/2017 £203,460
ES/N000501/2 Transfer ES/N000501/1 29/01/2018 03/12/2019 £98,616
 
Description All the planned objectives have been met for this grant. As a result of the PI's training and increased knowledge developed throughout the grant, some additional objectives were added and successfully completed, which have increased the quality and scope of the research produced.

This grant was transferred from Coventry University. At Nottingham, we subsequently identified the most robust and widely used depression and suicidality assessment tools developed for the general population, to adapt for autistic adults. We then adapted these tools on the basis of feedback from six focus groups, 30 interviews, and two large online surveys with autistic adults. The tools were then tested for validity in a large sample of autistic and non-autistic adults in a further two online surveys.

Alongside this program of work, the research team also conducted a number of studies to better understand, assess and prevent suicide in partnership with autistic adults and those who support them. This involved testing the applicability of models developed to explain mental health and suicide in the general population to autistic people, and exploring autistic people's experience of assessment, diagnosis, support and treatment. This helped identify what aspects of current models, assessments, support and treatment needed to be adapted to better assess, understand and prevent mental health problems and suicide in autistic people.

For example, the research team co-designed an online survey in partnership with autistic adults with lived experience of suicidality and/or mental health problems, to better understand the unique experience of depression and suicidality in autistic adults, and identify autism specific factors to include in our adapted tools. We identified that camouflaging ones autism characteristics to fit into social situations, unmet support needs, lack of meaningful social connections, feeling a burden on others, experiencing a failed social struggle with feelings that there is no hope of escape or rescue, all increase risk of depression and suicidal thoughts. Autistic adults told us that they were frequently misdiagnosed with mental health problems, and were not believed by professionals when they said they felt suicidal. From this, we developed resources for practitioners to be aware of these issues, and better support autistic adults experiencing mental health problems and suicidality.

We obtained a large sample of responses to the suicidality assessment tool developed for the general population, in autistic and general population adults. We found additional evidence that suicidality assessment tools developed for the general population do not work in the same way for autistic adults, particularly questions which rely on social and communication skills, or abstract thinking - areas which we know autistic people find difficult.

We used all this information to adapt the candidate tools for autistic adults. We then ran a further online survey, asking a larger sample of over 200 autistic adults to feedback on the clarity, relevance, and any other thoughts about the questions in the original versions of the tools developed for the general population, and our adapted tools for autistic adults. Autistic adults reported that our adapted tools were much more relevant to their experience of depression and suicidality, and much clearer to complete. We also used the feedback to improve the clarity and relevance of the tools further for autistic adults.

The final phase of the work explored how well our adapted tools work in identifying depression and suicidality in a large sample of autistic adults. We found that the adapted suicidality assessment tool more strongly captured relevant experiences of suicidality in autistic adults compared to the original version of the tool. The depression assessment tool captured autistic adults unique indicators of depression not previously included in any other currently available depression assessment tool developed for the general population, and also better captured indicators of depression shared with the general population, by better distinguishing symptoms of depression from similar overlapping signs of autism.

The finalised tools - Suicide Behaviours Questionnaires - Autism Spectrum Conditions (SBQ-ASC) and Autistic Depression Assessment Tool - Adults (ADAT-A) - are currently publicly available on our project website, for use in future research free of charge.

The models developed by the research team over the course of the grant to better understand mental health and suicidality in autistic people, are guiding future research, assessment and suicide prevention strategies with and for autistic adults. This work has led to a number of successful grant applications: 1) to develop a new self-harm assessment tool with and for autistic adults with/without intellectual disability (ESRC); 2) understand risk markers for suicide (NIHR, Chief Science Officer, Autistica); and 3) develop new autism specific suicide prevention interventions with and for autistic adults (NIHR). This work has also been cited in a number of international policy documents, and been used to develop a range of resources and training commissioned by NHS England and local NHS trusts, to help better support autistic people experiencing mental health problems and suicidality.
Exploitation Route The new depression and Suicidality assessment tools developed for autistic adults from this project will be the first to enable researchers, clinicians and service providers to effectively assess these difficulties in this group, and improve their access to appropriate support and treatment. The research team have already been contacted by many researchers, NHS trusts, the autism champions from the Royal College of Practitioners and Psychiatrists, and many more charities, clinicians and service providers about assessing mental health in autism. Therefore we have an excellent impact pathway to ensure that our new tools are used in both research and clinical practice.

The research program has also led to new knowledge regarding risk and protective factors for depression and suicide in autistic adults, and contributed to the development of new adapted theories to better understand and prevent suicide in autistic adults for the first time. This knowledge is being used to successfully apply for further funding to better understand and prevent mental health problems and suicide in autistic people. The PI and research team have also been invited to join a number of working groups, contribute to training, resources, and international policy briefs, aiming to create new evidence informed practice and policy to better prevent suicide in autistic people.
Sectors Communities and Social Services/Policy,Healthcare,Government, Democracy and Justice

URL https://sites.google.com/view/mentalhealthinautism
 
Description Findings from the project have been used by the leading UK research charity Autistica to lobby parliament, to better support autistic people with mental health problems and risk of suicide. This is evidenced by the published outputs from the grant being cited in a number of briefings produced by Autistica, which the PI has been invited to co-author with the charity, and disseminated to UK policy makers. This campaigning resulted in the autistic community being named as a high risk group for suicide in NICE suicide prevention guidelines, a new priority for the Department of Health's "Think Autism Strategy" to reduce the mortality gap between autistic people and the general population - a leading cause of which is by suicide, and a debate on mental health and suicide in the autism community in the UK house of parliament. Published research findings from the grant have also been cited in policy documents of the Interagency Autism Coordinating Committee (IACC) in the US, which advises federal government on policy changes relating to autism. The PI was invited to present and participate in a panel on the topic of suicide prevention in autism, which was videoed and made publicly available to research end users and US policy makers, and included in the IACC report in 2017. The PI was invited back to speak and chair a suicide prevention panel at a further IACC event in May 2019, and write a policy brief summarising the evidence regarding suicide in autism for the IACC (to be published later in 2021). The PI's research outputs from the current project has also been cited in the recent UK POST note on autism 2020. The PI's research funded by the current project has been used in commissioned training by NHS England to help professionals better support autistic children in crisis. The research has also been used to inform a range of resources and training for service providers across the UK and internationally to better support autistic people experiencing mental health problems and suicidality.
First Year Of Impact 2016
Sector Communities and Social Services/Policy,Healthcare
 
Description Autism POST Note
Geographic Reach National 
Policy Influence Type Citation in other policy documents
URL https://researchbriefings.parliament.uk/ResearchBriefing/Summary/POST-PN-0612
 
Description Autistica training for professionals supporting autistic children in crisis
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
URL https://amrcopenresearch.org/documents/2-30
 
Description Provided evidence to federal advisory committee (IACC)
Geographic Reach North America 
Policy Influence Type Gave evidence to a government review
URL https://iacc.hhs.gov/meetings/working-group-meetings/2019/health-outcomes/workshop/may21/
 
Description Research used in policy briefing
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
 
Description Suicide Prevention Training for Clinicians
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
 
Description A novel task to explore patterns of self-harm in autistic adults.
Amount $25,000 (USD)
Organisation Alan B. Slifka Foundation 
Sector Charity/Non Profit
Country United States
Start 08/2018 
End 08/2020
 
Description INSAR Policy Brief
Amount $15,000 (USD)
Organisation International Society for Autism Research (INSAR) 
Sector Academic/University
Country Global
Start 08/2018 
End 12/2019
 
Description Impact Accelerator Award
Amount £5,000 (GBP)
Organisation University of Nottingham 
Sector Academic/University
Country United Kingdom
Start 02/2019 
End 07/2019
 
Description NIHR129196 - Adapted suicide safety plans to address self harm, suicidal ideation and suicide behaviours in autistic adults: an interventional single arm feasibility trial and external pilot randomised controlled triaL
Amount £650,000 (GBP)
Funding ID 129196 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 09/2020 
End 03/2023
 
Description Suicide deaths in people with autism in Scotland: secondary data analysis and data linkage of administrative and health records
Amount £234,786 (GBP)
Organisation Scottish Government Health and Social Care Directorates (SGHSC) 
Sector Public
Country United Kingdom
Start 04/2021 
End 03/2023
 
Title ADAT-A 
Description The Autistic Depression Assessment Tool - Adult (ADAT-A) was developed with and for autistic adults without co-occurring intellectual disability, to better capture and measure depression in this group. The ADAT-A has been shown to capture three depression symptom domains: 1) Cognitive/Affective symptoms (e.g. losing interest in a previously intense interest, feeling depressed or hopeless); 2) Somatic symptoms (e.g. exhaustion, sleep difficulties); and 3) unique autism specific signs of depression (e.g. finding it more difficult to cope in social situations, becoming more sensitive to ones environment). The ADAT-A has evidence in support of a range of measurement properties, with focus groups, interviews and online surveys showing that autistic adults interpret and respond to the measure as intended by the tool developers, that the ADAT-A strongly captures different aspects of depression in autistic adults, and that the ADAT-A is sensitive to detect associations with other related constructs such as psychological distress. Once published, the ADAT-A will be freely available to use in research studies. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2020 
Provided To Others? No  
Impact The ADAT-A is the first depression assessment tool developed and validated with and for autistic adults, without co-occurring intellectual disability, for use in research studies. The ADAT-A is currently being used in ongoing research to better capture and measure depression in autistic adults. A number of research groups and services worldwide are enquiring about using the ADAT-A in their own research and practice. Once published, the ADAT-A will be freely available to use in research studies. 
URL https://sites.google.com/view/mentalhealthinautism/resources/tools
 
Title SBQ-ASC 
Description As part of the current grant, the research team developed the Suicide Behaviours Questionnaire - Autism Spectrum Conditions (SBQ-ASC). The SBQ-ASC is a brief 6-item self-report questionnaire, developed and validated with and for autistic adults, without co-occurring intellectual disability, to more accurately identify current and lifetime suicidal thoughts and behaviours, non-suicidal self-injury, and self-harm, in this group. The SBQ-ASC has been validated for use in research studies, with evidence in support of a range of measurement properties. The SBQ-ASC is particularly useful in research to better understand characteristics and risk factors for suicidal thoughts and behaviours in autistic adults without co-occurring intellectual disability. The SBQ-ASC is freely available for use in research studies. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2020 
Provided To Others? Yes  
Impact The SBQ-ASC has enabled the first research studies to explore suicidality in autistic adults using a tool developed with and for this group. Results are demonstrating that the adapted SBQ-ASC more strongly captures the relevant construct of suicidality in autistic adults compared to the original version of the tool. The research team has received a number of enquiries from other research groups and services around the world supporting autistic adults, to have access to and use the tool in their research and practice. 
URL https://sites.google.com/view/mentalhealthinautism/resources/tools
 
Title Wellbeing Plan 
Description The research team developed a wellbeing plan for researchers to utilise in studies including vulnerable groups, particularly autistic adults taking part in studies concerning mental health, self-harm, or suicidality. The wellbeing plan enables researchers to better support research participants taking part in sensitive research. The wellbeing plan is being made publicly available through the leading autism research charity Autistica's website hosting useful research tools to facilitate autism research in the UK. 
Type Of Material Improvements to research infrastructure 
Year Produced 2021 
Provided To Others? Yes  
Impact This research tool enabled the research team to support autistic people involved in the MHAutism project, and will enable researchers across the UK to better support their autistic participants taking part in sensitive research projects. 
URL https://sites.google.com/view/mentalhealthinautism/resources/tools
 
Description Autistica 
Organisation Autistica
Country United Kingdom 
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. Autistica have also supported our research by advertising our online research surveys as part of this grant through their discover network - a research participation database consisting of over 10,000 autistic people and their families who have consented to take part in research studies.
Impact Supported submission of evidence to a debate in the house of commons about mental health and suicide in the autistic community. A co-authored policy brief document "Autism strategy briefing on suicide prevention" - ahead of the UK government's review of the autism strategy. Inclusion of addressing the mortality gap between autistic people and the general population, a leading cause of which is suicide, in the Department of Health's updated Autism Strategy. Inclusion of autistic people as a high risk group for suicide in NICE clinical guidance.
Start Year 2018
 
Description Newcastle University 
Organisation Newcastle University
Department School of Neuroscience Newcastle
Country United Kingdom 
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 biannual research visits from the PI in each year of the project 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 further funding to maximise impact from the current grant, and to realise future directions from the work generated from the current grant.
Impact Application for an impact accelerator award to fund work to maximise the impact of the PI's research. Two co-authored publications generated from the current project and collaboration.
Start Year 2018
 
Description Project Partners 
Organisation Autistica
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team bring expertise in autism, mental health and suicide prevention, and autism adapted safety plans to this collaboration.
Collaborator Contribution Autistica have contributed funds directly to the project to cover the costs of training service providers, and in kind contributions in the form of staff time, access to their volunteers database of over 10,000 autistic people and their families who have consented to take part in research studies, and access to their insight group, consisting of autistic adults and their families who are available to participants community and public engagement activities in research. Autistica are also supporting the project with dissemination to their vast autism community network, and contacting with services and policy makers across the UK and internationally. The Universities of Durham, Nottingham, Glasgow, and Northumbria are contributing expertise to the project, including in public health, health economics, social work, statistics, safety planning, training, self-harm and suicide prevention.
Impact This partnership has resulted in this grant and successful delivery of our aims so far. The collaboration is multi-disciplinary, including: lived experience, statistics, health economics, public health, psychology, social work, autism, mental health and suicide research.
Start Year 2020
 
Description Project Partners 
Organisation Durham University
Country United Kingdom 
Sector Academic/University 
PI Contribution The research team bring expertise in autism, mental health and suicide prevention, and autism adapted safety plans to this collaboration.
Collaborator Contribution Autistica have contributed funds directly to the project to cover the costs of training service providers, and in kind contributions in the form of staff time, access to their volunteers database of over 10,000 autistic people and their families who have consented to take part in research studies, and access to their insight group, consisting of autistic adults and their families who are available to participants community and public engagement activities in research. Autistica are also supporting the project with dissemination to their vast autism community network, and contacting with services and policy makers across the UK and internationally. The Universities of Durham, Nottingham, Glasgow, and Northumbria are contributing expertise to the project, including in public health, health economics, social work, statistics, safety planning, training, self-harm and suicide prevention.
Impact This partnership has resulted in this grant and successful delivery of our aims so far. The collaboration is multi-disciplinary, including: lived experience, statistics, health economics, public health, psychology, social work, autism, mental health and suicide research.
Start Year 2020
 
Description Project Partners 
Organisation Northumbria University
Country United Kingdom 
Sector Academic/University 
PI Contribution The research team bring expertise in autism, mental health and suicide prevention, and autism adapted safety plans to this collaboration.
Collaborator Contribution Autistica have contributed funds directly to the project to cover the costs of training service providers, and in kind contributions in the form of staff time, access to their volunteers database of over 10,000 autistic people and their families who have consented to take part in research studies, and access to their insight group, consisting of autistic adults and their families who are available to participants community and public engagement activities in research. Autistica are also supporting the project with dissemination to their vast autism community network, and contacting with services and policy makers across the UK and internationally. The Universities of Durham, Nottingham, Glasgow, and Northumbria are contributing expertise to the project, including in public health, health economics, social work, statistics, safety planning, training, self-harm and suicide prevention.
Impact This partnership has resulted in this grant and successful delivery of our aims so far. The collaboration is multi-disciplinary, including: lived experience, statistics, health economics, public health, psychology, social work, autism, mental health and suicide research.
Start Year 2020
 
Description Project Partners 
Organisation University of Glasgow
Department Institute of Health and Wellbeing
Country United Kingdom 
Sector Academic/University 
PI Contribution The research team bring expertise in autism, mental health and suicide prevention, and autism adapted safety plans to this collaboration.
Collaborator Contribution Autistica have contributed funds directly to the project to cover the costs of training service providers, and in kind contributions in the form of staff time, access to their volunteers database of over 10,000 autistic people and their families who have consented to take part in research studies, and access to their insight group, consisting of autistic adults and their families who are available to participants community and public engagement activities in research. Autistica are also supporting the project with dissemination to their vast autism community network, and contacting with services and policy makers across the UK and internationally. The Universities of Durham, Nottingham, Glasgow, and Northumbria are contributing expertise to the project, including in public health, health economics, social work, statistics, safety planning, training, self-harm and suicide prevention.
Impact This partnership has resulted in this grant and successful delivery of our aims so far. The collaboration is multi-disciplinary, including: lived experience, statistics, health economics, public health, psychology, social work, autism, mental health and suicide research.
Start Year 2020
 
Description Project Partners 
Organisation University of Nottingham
Department School of Psychology Nottingham
Country United Kingdom 
Sector Academic/University 
PI Contribution The research team bring expertise in autism, mental health and suicide prevention, and autism adapted safety plans to this collaboration.
Collaborator Contribution Autistica have contributed funds directly to the project to cover the costs of training service providers, and in kind contributions in the form of staff time, access to their volunteers database of over 10,000 autistic people and their families who have consented to take part in research studies, and access to their insight group, consisting of autistic adults and their families who are available to participants community and public engagement activities in research. Autistica are also supporting the project with dissemination to their vast autism community network, and contacting with services and policy makers across the UK and internationally. The Universities of Durham, Nottingham, Glasgow, and Northumbria are contributing expertise to the project, including in public health, health economics, social work, statistics, safety planning, training, self-harm and suicide prevention.
Impact This partnership has resulted in this grant and successful delivery of our aims so far. The collaboration is multi-disciplinary, including: lived experience, statistics, health economics, public health, psychology, social work, autism, mental health and suicide research.
Start Year 2020
 
Description Third Sector Partners 
Organisation Autistic Nottingham
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team have developed a new intervention - Autism Adapted Safety Plans (AASPs) - to reduce self-harm/suicidality with and for autistic people and those who support them. The research team has also developed free training for third sector organisations to deliver these AASPs to the autistic people they support.
Collaborator Contribution Our third sector partners have: 1) contributed the expertise of their staff free of charge, to advise on how to develop and deliver the AASP intervention, and training support workers in their use; 2) attended the training to deliver the AASPs; 3) identified autistic people who use their service to take part in the study and complete a safety plan.
Impact Autism Adapted Safety Plans Autism Adapted Safety Plan Training
Start Year 2020
 
Description Third Sector Partners 
Organisation Choice Support
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team have developed a new intervention - Autism Adapted Safety Plans (AASPs) - to reduce self-harm/suicidality with and for autistic people and those who support them. The research team has also developed free training for third sector organisations to deliver these AASPs to the autistic people they support.
Collaborator Contribution Our third sector partners have: 1) contributed the expertise of their staff free of charge, to advise on how to develop and deliver the AASP intervention, and training support workers in their use; 2) attended the training to deliver the AASPs; 3) identified autistic people who use their service to take part in the study and complete a safety plan.
Impact Autism Adapted Safety Plans Autism Adapted Safety Plan Training
Start Year 2020
 
Description Third Sector Partners 
Organisation Harmless
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team have developed a new intervention - Autism Adapted Safety Plans (AASPs) - to reduce self-harm/suicidality with and for autistic people and those who support them. The research team has also developed free training for third sector organisations to deliver these AASPs to the autistic people they support.
Collaborator Contribution Our third sector partners have: 1) contributed the expertise of their staff free of charge, to advise on how to develop and deliver the AASP intervention, and training support workers in their use; 2) attended the training to deliver the AASPs; 3) identified autistic people who use their service to take part in the study and complete a safety plan.
Impact Autism Adapted Safety Plans Autism Adapted Safety Plan Training
Start Year 2020
 
Description Third Sector Partners 
Organisation National Autistic Society
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team have developed a new intervention - Autism Adapted Safety Plans (AASPs) - to reduce self-harm/suicidality with and for autistic people and those who support them. The research team has also developed free training for third sector organisations to deliver these AASPs to the autistic people they support.
Collaborator Contribution Our third sector partners have: 1) contributed the expertise of their staff free of charge, to advise on how to develop and deliver the AASP intervention, and training support workers in their use; 2) attended the training to deliver the AASPs; 3) identified autistic people who use their service to take part in the study and complete a safety plan.
Impact Autism Adapted Safety Plans Autism Adapted Safety Plan Training
Start Year 2020
 
Description Third Sector Partners 
Organisation PAPYRUS
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team have developed a new intervention - Autism Adapted Safety Plans (AASPs) - to reduce self-harm/suicidality with and for autistic people and those who support them. The research team has also developed free training for third sector organisations to deliver these AASPs to the autistic people they support.
Collaborator Contribution Our third sector partners have: 1) contributed the expertise of their staff free of charge, to advise on how to develop and deliver the AASP intervention, and training support workers in their use; 2) attended the training to deliver the AASPs; 3) identified autistic people who use their service to take part in the study and complete a safety plan.
Impact Autism Adapted Safety Plans Autism Adapted Safety Plan Training
Start Year 2020
 
Description Third Sector Partners 
Organisation Shropshire Council
Country United Kingdom 
Sector Public 
PI Contribution The research team have developed a new intervention - Autism Adapted Safety Plans (AASPs) - to reduce self-harm/suicidality with and for autistic people and those who support them. The research team has also developed free training for third sector organisations to deliver these AASPs to the autistic people they support.
Collaborator Contribution Our third sector partners have: 1) contributed the expertise of their staff free of charge, to advise on how to develop and deliver the AASP intervention, and training support workers in their use; 2) attended the training to deliver the AASPs; 3) identified autistic people who use their service to take part in the study and complete a safety plan.
Impact Autism Adapted Safety Plans Autism Adapted Safety Plan Training
Start Year 2020
 
Description Third Sector Partners 
Organisation Surrey County Council
Country United Kingdom 
Sector Public 
PI Contribution The research team have developed a new intervention - Autism Adapted Safety Plans (AASPs) - to reduce self-harm/suicidality with and for autistic people and those who support them. The research team has also developed free training for third sector organisations to deliver these AASPs to the autistic people they support.
Collaborator Contribution Our third sector partners have: 1) contributed the expertise of their staff free of charge, to advise on how to develop and deliver the AASP intervention, and training support workers in their use; 2) attended the training to deliver the AASPs; 3) identified autistic people who use their service to take part in the study and complete a safety plan.
Impact Autism Adapted Safety Plans Autism Adapted Safety Plan Training
Start Year 2020
 
Description Third Sector Partners 
Organisation The Tomorrow Project
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team have developed a new intervention - Autism Adapted Safety Plans (AASPs) - to reduce self-harm/suicidality with and for autistic people and those who support them. The research team has also developed free training for third sector organisations to deliver these AASPs to the autistic people they support.
Collaborator Contribution Our third sector partners have: 1) contributed the expertise of their staff free of charge, to advise on how to develop and deliver the AASP intervention, and training support workers in their use; 2) attended the training to deliver the AASPs; 3) identified autistic people who use their service to take part in the study and complete a safety plan.
Impact Autism Adapted Safety Plans Autism Adapted Safety Plan Training
Start Year 2020
 
Description Third Sector Partners 
Organisation University of Nottingham
Country United Kingdom 
Sector Academic/University 
PI Contribution The research team have developed a new intervention - Autism Adapted Safety Plans (AASPs) - to reduce self-harm/suicidality with and for autistic people and those who support them. The research team has also developed free training for third sector organisations to deliver these AASPs to the autistic people they support.
Collaborator Contribution Our third sector partners have: 1) contributed the expertise of their staff free of charge, to advise on how to develop and deliver the AASP intervention, and training support workers in their use; 2) attended the training to deliver the AASPs; 3) identified autistic people who use their service to take part in the study and complete a safety plan.
Impact Autism Adapted Safety Plans Autism Adapted Safety Plan Training
Start Year 2020
 
Description AASP Website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact The research team has created a website for the AASP study, providing details of the study methods, partners and how to get involved.
Year(s) Of Engagement Activity 2020
URL https://sites.google.com/nihr.ac.uk/safetyplanstudy/home
 
Description Autism Adapted Safety Plan Training 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact 40 staff members working in our third sector partner organisations completed our Autism Adapted Safety Planning Training. This sparked discussion and interest in using the safety plans their practice supporting autistic people both within and beyond the study. Many asked whether these plans could be share and used outside of the study, with people with communication difficulties, undiagnosed autism, or other neurodevelopment conditions, and whether the safety plans could also be utilised by friends and family of people who might benefit from using the safety plans.
Year(s) Of Engagement Activity 2021
 
Description INSAR Policy Brief 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact We conducted seven workshops in the UK, US and Netherlands, and a large online survey, bringing together autistic people, those who support them, and policy makers, to identify the top 10 priorities for research, policy and practice s to prevent suicide in autistic people. Over 1,200 autistic people and those who support them were involved in this international consultation and prioritisation process. This process was supported by funding from the ESRC, Autistica, and the International Society for Autism Research (INSAR) Policy Brief award.
Year(s) Of Engagement Activity 2018,2019,2020
 
Description Invitation to join Autism Suicide Prevention Action Group - Surrey County Council 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Policymakers/politicians
Results and Impact The PI for the Nottingham site presented the AASP study to the Surrey County Council Autism and Suicide Prevention Action Group. After this presentation, the action group invited the PI to join and advise this action group to achieve their aims of developing new policies and support to better prevent suicide in the autism community in Surrey, UK.
Year(s) Of Engagement Activity 2021
 
Description MHAutism Public Engagement Event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact 40 autistic people, those who support them (charities, practitioners and family members), researchers and policy makers attended a half day engagement event to mark the end of the ESRC funded MHAutism project, discussion next steps for future research, and ways to develop and track impact together. The half day workshop started with a poster session to give attendees to present and discuss their research, practice and/or lived experience. Talks followed from the PI, associated PhD student, and mental health champion - an autistic adult with lived experience of suicidality, who has been involved with the project from the start. This sparked a questions and discussion from the audience and presenters. We then broke up into four smaller groups, each focused on different topics. This included how we could work together to ensure that the new tools developed from the ESRC funded project could be used in practice, how to track the impact of our work over the long term, and what the next steps for the research should be. A plenary session fed back the outcomes from the small groups, and larger discussion ensued. To make sure that the event achieved greater impact beyond those who came, we videoed the event and talks, and many attendees took part in a short interview describing why they can, what they learnt, and how they would use this new knowledge. We also had live drawing at the event, to provide an accessible and engaging summary of the outcomes from the final engagement event at the end of the project. All these impact materials are posted on our project website, and disseminated over our project twitter and facebook feeds. The event and outputs have been very positively received by research end users, and prompted public discourse on the issues raised and discussed at the event. A majority of attendees provided anonymous feedback, that they would use and/or share what they learnt at the event with others.
Year(s) Of Engagement Activity 2019
URL https://sites.google.com/view/mentalhealthinautism
 
Description Podcast - Publication from project 
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 Patients, carers and/or patient groups
Results and Impact The PI was invited to be interviewed for a podcast about her recently published research linked to the current project. The podcast was posted on the international journals website, and disseminated widely over social media. This generated a lot of interest and requests for further information from study participants, readers of the journal, professional practitioners and third sector organisations, who wanted to utilise and discuss the implications of the results for improving their own support and/or practice.
Year(s) Of Engagement Activity 2019
 
Description Press Release - Publication from Project 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact The PI drafted a press release detailing the results and important implications for policy and practice, of a published research study linked to the current project: "Autistic people urgently need access to tailored mental health support". The press release was circulated widely over twitter and social media, prompting much discussion by the autism community and those who support them. The PI also received many requests for further information from autistic people, their families, and professionals and service providers, who have either used the research findings to get access to better support for themselves and/or their loved ones, or to develop better services and support for autistic people experiencing mental health problems.
Year(s) Of Engagement Activity 2019
URL https://www.nottingham.ac.uk/news/pressreleases/2019/jan/autistic-people-urgently-need-access-to-tai...
 
Description Press Release - Publication from Project 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact A press release was disseminated summarising our systematic review which explored whether there are depression assessment tools validated for autistic adults. The press release was shared widely and discussed by the general public and charities over social media, and covered in a wide range of online news outlets.
Year(s) Of Engagement Activity 2018
 
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 over 3,300 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 support materials for autistic people and those who support them are regularly accessed and shared over social media by the general public, service providers, clinicians, leading researchers and charities worldwide. Some of these stakeholders have got in touch with us to give us positive feedback on how useful our resources have been to them, and in delivering training on mental health in autism to other professionals.
Year(s) Of Engagement Activity 2018,2019,2020
URL https://sites.google.com/view/mentalhealthinautism