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 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.
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+.
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+.
Organisations
- Coventry University (Lead Research Organisation)
- Autistica (Collaboration)
- UNIVERSITY OF NOTTINGHAM (Collaboration)
- PAPYRUS (Collaboration)
- COVENTRY UNIVERSITY (Collaboration)
- SURREY COUNTY COUNCIL (Collaboration)
- Newcastle University (Collaboration, Project Partner)
- Choice Support (Collaboration)
- NORTHUMBRIA UNIVERSITY (Collaboration)
- National Autistic Society (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- School of Oriental and African Studies (University of London) (Collaboration)
- Shropshire Council (Collaboration)
- DURHAM UNIVERSITY (Collaboration)
- AUTISTIC NOTTINGHAM (Collaboration)
- UNIVERSITY OF GLASGOW (Collaboration)
- The Tomorrow Project (Collaboration)
- Harmless (Collaboration)
- University of Cambridge (Project Partner)
- York University (Project Partner)
People |
ORCID iD |
| Sarah Cassidy (Principal Investigator) |
Publications
Camm-Crosbie L
(2019)
'People like me don't get support': Autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality.
in Autism : the international journal of research and practice
Pelton MK
(2020)
A Measurement Invariance Analysis of the Interpersonal Needs Questionnaire and Acquired Capability for Suicide Scale in Autistic and Non-Autistic Adults.
in Autism in adulthood : challenges and management
Rodgers J
(2023)
Adapted suicide safety plans to address self-harm, suicidal ideation, and suicide behaviours in autistic adults: protocol for a pilot randomised controlled trial
in Pilot and Feasibility Studies
Cassidy SA
(2020)
Advancing Our Understanding of Self-harm, Suicidal Thoughts and Behaviours in Autism.
in Journal of autism and developmental disorders
Cassidy SA
(2020)
An Expert Discussion on Autism in the COVID-19 Pandemic.
in Autism in adulthood : challenges and management
Pelton MK
(2017)
Are autistic traits associated with suicidality? A test of the interpersonal-psychological theory of suicide in a non-clinical young adult sample.
in Autism research : official journal of the International Society for Autism Research
Cassidy S
(2022)
Autism and autistic traits in those who died by suicide in England.
in The British journal of psychiatry : the journal of mental science
Mitchell P
(2021)
Autism and the double empathy problem: Implications for development and mental health.
in The British journal of developmental psychology
Richards G
(2019)
Autistic traits in adults who have attempted suicide
in Molecular Autism
| 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. Two systematic reviews found that no appropriate or valid depression or suicide risk assessment tools exist for autistic adults. Therefore we used a validated research tool to identify robust candidate measures to adapt for this group. We subsequently ran six group discussions with a variety of stakeholders (autistic adults, carers, practitioners, researchers and service providers), and thirty interviews with autistic adults. We found that current tools did not capture the unique presentation of depression or suicidal thoughts or suicidal behaviours in autistic adults, and that these individuals found it difficult to successfully interpret the meaning of the questions which meant that their answers did not accurately capture their symptoms. We used this information to adapt the candidate tools for autistic adults. The grant has now been transferred to the University of Nottingham, where the final phases of the work will be completed. |
| Exploitation Route | The new mental health assessment tools developed with and for autistic adults from this project will be the first to enable 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 the autism champion from the Royal College of Practitioners, 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. |
| 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. The PI's research outputs from the current project has also been cited in the recent UK POST note on autism 2020. Lastly, 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. |
| Sector | Communities and Social Services/Policy,Healthcare |
| Impact Types | Policy & public services |
| 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 | House of Commons Debate: Mental Health and Suicide in Autism |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Contribution to a national consultation/review |
| Description | Interagency Autism Coordinating Committee - October 2017 |
| Geographic Reach | North America |
| Policy Influence Type | Contribution to a national consultation/review |
| 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 | Autistica Research Grant |
| Amount | £87,000 (GBP) |
| Organisation | Autistica |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 05/2017 |
| End | 01/2019 |
| Description | Autistica Small Grant |
| Amount | £18,950 (GBP) |
| Organisation | Autistica |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 02/2017 |
| End | 07/2017 |
| Description | Coventry University Pump Prime |
| Amount | £9,800 (GBP) |
| Organisation | Coventry University |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 01/2016 |
| End | 07/2016 |
| 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 | NIHR-CLAHRC Development Grant |
| Amount | £50,000 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2016 |
| End | 06/2017 |
| 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 |
| Description | The lost generation: How a lack of identification of ADHD and autism fails millions of adults |
| Amount | £241,411 (GBP) |
| Funding ID | ES/X000141/1 |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2022 |
| End | 09/2025 |
| 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 | Brief tool to identify autism in those who died by suicide. |
| Description | We have developed a brief tool to facilitate identification and classification of strength of evidence regarding possible autism diagnosis. The tool has been developed for identification of autism (diagnosed or as yet undiagnosed) from coroners inquest records. This tool will be available for other researchers to use in a variety of contexts, where it is necessary to gather evidence of autism from a variety of sources, such as medical records or second hand accounts of a person. |
| Type Of Material | Physiological assessment or outcome measure |
| Year Produced | 2017 |
| Provided To Others? | No |
| Impact | Development of this novel tool has enabled us to identify evidence of possible autism (diagnosed and not yet diagnosed) in those who died by suicide, to help ascertain the true rate of autism in this group. We have found that autism diagnosis is over-represented in those who died by suicide. This tool has also assisted coroner in identifying possible undiagnosed autism in ongoing inquests investigating causes of death. |
| 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 | Autism Mortality Review |
| Organisation | University of Cambridge |
| Department | Autism Research Centre (ARC) |
| Country | United Kingdom |
| 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 |
| 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 | 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 |
| Organisation | Newcastle University |
| Department | Northern Institute for Cancer Research 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 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 | 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 | Scientific Advisory Board |
| Organisation | Coventry University |
| Department | Centre for Technology Enabled Health Research (CTEHR) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The research team are leading the current project in partnership with a multi-disciplinary advisory board. We have contributed our expertise in conducting participatory suicide in autism research, intellectual input into the design of the project, and training of research staff in conducting the research. |
| Collaborator Contribution | The scientific advisory board contributed multi-disciplinary expertise and intellectual input to designing, conducting the research and analysing the data for publication. This has included perspectives from leading academics in autism and mental health (Autism Research Centre, University of Cambridge; Institute of Neuroscience, Newcastle University), and suicidology (University of Glasgow, SOAS). |
| Impact | Design of the first Psychological Autopsy study to ascertain the prevalence of autism in those who died by suicide, and identify targets to prevent future deaths by suicide. Brief tool to identify autism in those who died by suicide. Adapted Psychological Autopsy Interview to explore the circumstances and characteristics of those who died. Adapted autism screening (Social Responsiveness Scale) and diagnostic interview (Autism Diagnostic Interview - Revised) to gather evidence of possible and confirmed autism in those who died. |
| Start Year | 2017 |
| Description | Scientific Advisory Board |
| Organisation | Newcastle University |
| Department | School of Neuroscience Newcastle |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The research team are leading the current project in partnership with a multi-disciplinary advisory board. We have contributed our expertise in conducting participatory suicide in autism research, intellectual input into the design of the project, and training of research staff in conducting the research. |
| Collaborator Contribution | The scientific advisory board contributed multi-disciplinary expertise and intellectual input to designing, conducting the research and analysing the data for publication. This has included perspectives from leading academics in autism and mental health (Autism Research Centre, University of Cambridge; Institute of Neuroscience, Newcastle University), and suicidology (University of Glasgow, SOAS). |
| Impact | Design of the first Psychological Autopsy study to ascertain the prevalence of autism in those who died by suicide, and identify targets to prevent future deaths by suicide. Brief tool to identify autism in those who died by suicide. Adapted Psychological Autopsy Interview to explore the circumstances and characteristics of those who died. Adapted autism screening (Social Responsiveness Scale) and diagnostic interview (Autism Diagnostic Interview - Revised) to gather evidence of possible and confirmed autism in those who died. |
| Start Year | 2017 |
| Description | Scientific Advisory Board |
| Organisation | School of Oriental and African Studies (University of London) |
| Department | Centre for Cultural, Literary and Postcolonial Studies |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The research team are leading the current project in partnership with a multi-disciplinary advisory board. We have contributed our expertise in conducting participatory suicide in autism research, intellectual input into the design of the project, and training of research staff in conducting the research. |
| Collaborator Contribution | The scientific advisory board contributed multi-disciplinary expertise and intellectual input to designing, conducting the research and analysing the data for publication. This has included perspectives from leading academics in autism and mental health (Autism Research Centre, University of Cambridge; Institute of Neuroscience, Newcastle University), and suicidology (University of Glasgow, SOAS). |
| Impact | Design of the first Psychological Autopsy study to ascertain the prevalence of autism in those who died by suicide, and identify targets to prevent future deaths by suicide. Brief tool to identify autism in those who died by suicide. Adapted Psychological Autopsy Interview to explore the circumstances and characteristics of those who died. Adapted autism screening (Social Responsiveness Scale) and diagnostic interview (Autism Diagnostic Interview - Revised) to gather evidence of possible and confirmed autism in those who died. |
| Start Year | 2017 |
| Description | Scientific Advisory Board |
| Organisation | University of Cambridge |
| Department | Autism Research Centre (ARC) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The research team are leading the current project in partnership with a multi-disciplinary advisory board. We have contributed our expertise in conducting participatory suicide in autism research, intellectual input into the design of the project, and training of research staff in conducting the research. |
| Collaborator Contribution | The scientific advisory board contributed multi-disciplinary expertise and intellectual input to designing, conducting the research and analysing the data for publication. This has included perspectives from leading academics in autism and mental health (Autism Research Centre, University of Cambridge; Institute of Neuroscience, Newcastle University), and suicidology (University of Glasgow, SOAS). |
| Impact | Design of the first Psychological Autopsy study to ascertain the prevalence of autism in those who died by suicide, and identify targets to prevent future deaths by suicide. Brief tool to identify autism in those who died by suicide. Adapted Psychological Autopsy Interview to explore the circumstances and characteristics of those who died. Adapted autism screening (Social Responsiveness Scale) and diagnostic interview (Autism Diagnostic Interview - Revised) to gather evidence of possible and confirmed autism in those who died. |
| Start Year | 2017 |
| Description | Scientific Advisory Board |
| Organisation | University of Glasgow |
| Department | Mental Health and Wellbeing Glasgow |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The research team are leading the current project in partnership with a multi-disciplinary advisory board. We have contributed our expertise in conducting participatory suicide in autism research, intellectual input into the design of the project, and training of research staff in conducting the research. |
| Collaborator Contribution | The scientific advisory board contributed multi-disciplinary expertise and intellectual input to designing, conducting the research and analysing the data for publication. This has included perspectives from leading academics in autism and mental health (Autism Research Centre, University of Cambridge; Institute of Neuroscience, Newcastle University), and suicidology (University of Glasgow, SOAS). |
| Impact | Design of the first Psychological Autopsy study to ascertain the prevalence of autism in those who died by suicide, and identify targets to prevent future deaths by suicide. Brief tool to identify autism in those who died by suicide. Adapted Psychological Autopsy Interview to explore the circumstances and characteristics of those who died. Adapted autism screening (Social Responsiveness Scale) and diagnostic interview (Autism Diagnostic Interview - Revised) to gather evidence of possible and confirmed autism in those who died. |
| Start Year | 2017 |
| 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 | 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 | 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 | MHAutism Stakeholder Event Years 1-2 |
| 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 | Two half day workshops 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 | Mental Health in Autism Training |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | The research team were commissioned by Coventry and Warwickshire Partnership NHS Trust to develop and deliver a series of 5 workshops, to train Allied Mental Health Professionals (AMHPs) in autism and mental health. 50 AMHPs attended the workshops, which covered what autism was, why these individuals may be more likely to experience mental health difficulties, and how assessments could be successfully adapted for this group. A majority of attendees rated the training highly, and said that they would make changes to their own practice, and in their teams practice on the basis of what they learned from the training. A majority of participants also said that they would pass on what they learned to colleagues outside of their immediate team in the NHS. |
| Year(s) Of Engagement Activity | 2017 |
| 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 | 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 | 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 | 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 | 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 | 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 | 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 |
| Description | Recommendations from the 2021 Australasian Society for Autism Research "Health, Wellbeing and Suicide Prevention in Autism" Conference and Roundtable. |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The PI was invited to chair an expert panel and working group, to develop a set of recommendations from a conference, aimed to influence policy makers in Australia, to better support and prevent suicide in autistic people. The panel consisted of academics, clinicians, policy makers, and those with lived experience of autism and/or suicide. The working group developed a policy brief which has been published and shared with policy makers, third sector partners, academics and clinicians both across Australia and worldwide. The policy brief has also been translated to Portuguese and further dissemination and impact of the work. |
| Year(s) Of Engagement Activity | 2021 |
| URL | http://eprints.bournemouth.ac.uk/36916/1/ASfAR%20Conference%20and%20Roundtable%20Final%20Report.pdf |
| 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 |