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MHAutism Recognised with Award!
Sarah Cassidy received a National Autistic Society Professionals Award, in the "Most Impactful Researcher" category! This award recognises and rewards outstanding research by a researcher and their team. Applicants had to demonstrate the quality of their research, evidence of meaningfully involving autistic people in their research, relevance of their research to the autistic community, high potential to improve lives and/or influence practice, and evidence of making positive change.
Sarah said "I am honoured to receive this award from the National Autistic Society. I do not see this as just my award, but recognition of all the autistic people and their families who have joined me and my team on this important journey, and all we have achieved together. I know we will continue to work together to prevent suicide in autistic people, and ensure that every autistic person lives a long, happy and healthy life. From the bottom of my heart, thank you all!"
MHAutism Thank You Event! Our team held a public engagement event on the 27th November 2019 to mark the end of a major research project, aiming to better assess and understand suicidal thoughts and behaviours in partnership with autistic adults. This event aimed to thank all of our supporters, share what we have learnt over the past 4 years, and discuss next steps for the future together.
40 people attended the event, including autistic people, their families, clinicians, service providers, charities, and researchers.
The event started with a lunch and poster session. Then talks from our mental health champion Jon Adams, our PhD student on the project Mirabel Pelton, and the project lead Sarah Cassidy, followed by a panel discussion. After a refreshment break, four discussion groups discussed next steps for developing our new assessment tools, new ways of involving more of the autism community in deciding the direction of our research, and next steps for a new theory of suicide in autism.
All talks from the event have been recorded and will be available soon! Inky thinking also live drew the event. We think they have done an amazing job of capturing the discussions (see below):
Thank you to everyone who attended, and all our supporters. You have helped us better understand and support autistic people experiencing self-injury and thoughts of ending life. We look forward to paving the way to a hopeful future together for many more years to come.
16 Dec 2019
NEW results! Our team have been busy analysing responses to the recent MHAutism survey - thank you to everyone who took part!
We asked autistic and non-autistic adults to complete and feedback on the assessment tools we adapted in partnership with autistic people. We also asked participants to complete and feedback on the original version of the tools developed for non-autistic people. This helped us understand if our adaptations work better for both autistic and non-autistic people.
We have finished analysing your responses and feedback! These results have been presented at the Autism Europe Congress in Nice on the 14th September and at the International Association for Suicide Prevention Congress in Londonderry on the 18th September.
We found that our adaptations made the suicidality assessment tool clearer to both autistic and non-autistic adults. We also found that autistic and non-autistic adults interpreted and responded to the questions in a similar way. This means that our new tool can be used in research involving both autistic and non-autistic people. This could help us understand how to better support the unique needs of autistic people. This also shows that working in partnership with autistic people can make things better for everyone!
Based on the feedback we received from participants, we are making a few more changes to the depression assessment tool. We will be launching another survey in October to test our final adaptations to this tool. Thank you for your help and feedback!
INSAR Policy Brief As part of our work identifying the Top 10 Priorities for preventing suicidality in autism we're busy preparing a policy report that brings together everything we've done since 2016.
This report will talk about the priorities autistic adults and their allies identified, what research needs to be done to address these, and what policy makers can do now to ensure that appropriate care and support is available for anyone that needs it. We're also including direct quotes from autistic people and their families highlighting how each of the Top 10 priorities currently effects them.
We're currently inviting comments from everyone who attended our event in April 2019, to make sure this report accurately reflects the experiences and opinions of those whom this report directly effects. We'll then be submitting this to INSAR for review in October 2019 before it's published to wider audiences.
Do follow our Twitter @mhautism for more up to date information!
Survey closed! Thank you to over a thousand people who have accessed our latest survey aiming to understand well how our adapted depression and suicidality measures work. Such an amazing response, and the really helpful comments you've provided, will allow us to make some final changes to the measures to make sure they are appropriate for use with autistic adults.
We also invited non-autistic adults to take part, and it's been really interesting to see very similar difficulties with the original measures. This suggests the improvements we're making could benefit everyone.
Watch this space for our final adaptations, and again thank you to everyone who has been involved for providing their time and invaluable insight.
23 Aug 2019
Adapting Assessment Tools for Mental Health in Autism We are now recruiting for the next stage of our research!
We are looking for adults, aged 18 years and older, without learning disability. You can take part if you are autistic, suspect you are autistic (but not yet diagnosed), or if you are not autistic. We also need people with and without experience of mental health problems, self-injury or thoughts of ending life, to take part.
Follow this link to the online survey for further information and to take part! RECRUITMENT NOW CLOSED
15 JUL 2019
Adapting assessment tools for mental health Thank you to everyone who gave valuable feedback on the depression and suicidality assessment tools that we are busy adapting for use with autistic adults.
We have complete data from 251 autistic (or suspect they are autistic) adults, from across 4 different continents. The suggestions provided to help improve both measures have been integrated into a final version which we will soon be testing in another online survey.
Overall, people found our adaptations to the depression measure were much clearer, and covered more important areas than the original, and attitudes to our adaptated suicidality measure were also positive.
We also asked for feedback on each question, and some of the key changes we've made as a result of this are: ensuring awareness of lifelong difficulties, gauging what "normal" means, and making questions as clear as possible.
The next stage of our research will involve testing these new measures with autistic and non-autistic adults, who may or may not have experience with mental health difficulties. Watch this space for a link to the online survey!
18 June 2019
Presenting the Top 10 On 21st May Sarah Cassidy travelled to Washington D.C to present the Top 10 priorities for preventing suicide in autism for the Interagency Autism Coordinating Committee, a workshop bringing together international research 'Addressing the Mental Health Needs of People on the Autism Spectrum'.
Follow this link to find out more about the other talks taking place at the workshop - IAAC 2019 Workshop
INSAR Policy Brief Top 10! After an amazing event on the 4th & 5th April 2019, we are very happy to announce the top 10 research priorities for preventing suicide in Autism.
Without further ado, here are the Top 10!!
10. What is the impact of poor sleep on suicide risk in autistic people, and how can this be measured?
9. How well do existing models of understanding suicide apply to autistic people?
8. How do autistic people seek help when they are in a crisis?
7. What is the experience of suicidality in autistic people? Is this experience different to the general population?
6. How should interventions be adapted for autistic people and individual presentations?
5. How can we best identify and assess suicidal thoughts and suicidal behaviours in autistic people, in research and clinical practice?
4. How can we further understand suicide where mental health is not a factor across the lifespan?
3. To what extent are autistic people not believed about the severity of their distress?
2. What are the risk and protective factors for suicide in autism across the lifespan?
1. What barriers do autistic people experience when seeking help which may put them at greater risk of suicide?
A number of autistic people, clinicians, service providers, policy makers and researchers came together to prioritise the areas of research that best represent the needs of autistic people. Following this, they also discussed how to make these research questions a reality. Members of the team will be appearing at a number of events over the following months to present our findings - follow our Twitter page for up to date information.
03 May 2019
New Research! Sarah Cassidy has been awarded the INSAR Slifka-Ritvo Award at the INSAR Annual Meeting 2019 in Montreal, Canada. This project will look at a novel test to explore patterns of self harm in autistic adults.
02 May 2019
INSAR Policy Brief Thank you to over 700 people who completed our Policy Brief survey over the last few months. It's amazing to have such a huge response, with lots of interesting points to discuss.
We're busy preparing for the INSAR Policy Brief Meeting this week, where we'll be finalising the Top 10 research priorities for Autism and suicidality, and how we can make the answers to these questions a reality in the future. Attending are autistic people, members of the autism community, clinicians, charities, policy makers and researchers.
We'll be sharing and tweeting the results of this meeting at the INSAR 2019 Annual Meeting in Montreal in May.
01 Apr 2019
Psychological Autopsy: Study Update Thank you to everyone who has given their time to talk about loved ones who have taken their own lives. We have talked to more than 40 family and friends, and are now working through our data. Thanks to everyone's generosity this is no small task, but we hope to be able to share some interesting findings to help better understand risk factors.
If you would like more information about this study please get in touch with the Research Team at Coventry via email at suicideprevention.hls@coventry.ac.uk
01 Apr 2019
Stop the presses! A press release has just been published outlining the findings from our latest published research, highlighting the urgent need for tailored mental health support for autistic people.
Click here to read the press release.
11 Jan 2019
Thoughts of Ending Life Survey We have a new survey available, helping to understand the way autistic people may experience thoughts of ending their life, and if this may be different to the experience of non-autistic people. This survey is open to everyone, whether or not you have a diagnosis, or even if you have no characteristics of autism.
For more information, and to complete the survey, please click here to be redirected.
8 Jan 2019
Psychological Autopsy: Study Update We have now begun our second round of recruitment, and invitations have been posted to the next of kin. In these interviews we talk about the personal characteristics of their loved one, and the circumstances leading up to their death.
We are hoping to talk to another 20 families over the next few months. If you have not received an invitation through the Coroner's Office, but would like to talk to us about a family member or close friend, please get in touch to find out more about our research via email at suicideprevention.hls@coventry.ac.uk
7 Jan 2018
Psychological Autopsy: Study Update Thank you to everyone who has given their time to talk about loved ones who have taken their own lives. We are now past the half way mark and by the end of December will have spoken to over 30 families.
We will continue interviewing after the Christmas holidays and hope to speak to another 20 families.
If you would like more information about this study please get in touch with the Research Team at Coventry via email at suicideprevention.hls@coventry.ac.uk
4 Dec 2018
Research and Policy Priority Survey Our online survey is available to complete, open to all with a connection to autism and suicide. We are looking for your views on which research topics should be prioritised and to generate future policy initiatives.
Click here to be redirected.
14 Nov 2018
The Forgotten Half Million: Study Update Thank you to everyone who completed our online survey to provide opinions on original and adapted depression and suicidality measures. We received a fantastic response, especially in light of such a difficult topic. We are now busy looking at all the results, and hope to have final adapted measures ready to be tested soon.
2 Nov 2018
“How do we ask the question?”: Sarah Cassidy presented a workshop at the Suicide Bereavement UK's International Conference on 25th September 2018, highlighting our work on improving assessments for depression and suicidality. The event this year focussed on underrepresented groups affected by suicide, and the workshop proved very popular with an audience of members of the autistic community, clinicians, researchers and members of the third sector. Many of the attendees gave encouraging feedback to take what they had learnt about autism back into their practice to both share with co-workers and adapt their use of language with autistic service users.
25 Sep 2018
Support for Mental Health The Autism and Mental Health conference took place in Leeds on 12 September 2018. Sarah Cassidy presented the latest research aiming to better assess, understand and prevent self-harm and suicide in autistic people.
https://network.autism.org.uk/content/autism-and-mental-health-conference-2018
12 Sep 2018
International Collaboration In October 2017 Sarah Cassidy presented at the Interagency Autism Coordinating Centre (IACC) committee meeting in Maryland, USA. A video of her talk is available below starting at 03:20:15, discussing our work identifying risks and protective factors, language use and the difficulties with assessments currently used to measure suicidality in autism.
24 Oct 2017
Special Interest Groups Sarah Cassidy led a series of three Special Interest Groups at the International Society for Autism Research (INSAR) annual meetings from 2016 - 2018. These meetings raised awareness among researchers, clinicians and autistic people about the need for more research exploring suicide in autism, and what the next steps for research should be. These meetings led to successful grant applications to Autistica and INSAR, to support research and meetings to identify the top 10 priorities to prevent suicide in partnership with autistic people and their allies.
Raising Awareness Sarah Cassidy was invited to present at the National Autistic Society Professional Conference, on the 1st – 2nd March 2016.
Sarah presented a talk on how to assess and reduce suicide risk in autistic adults. The talk was really well received by a community of autistic adults, family members and professionals.
1 Mar 2016
Network Autism Catch an interview by Network Autism with Sarah Cassidy discussing current work.
5 Nov 2015
New Research! The MHAutism team have received funding from the National Institute of Health Research. The MHAutism team will work with the Autism Research Centre, University of Cambridge, to find out how many people who die by suicide suicide in the UK were diagnosed with an Autism Spectrum Condition (ASC), and develop recommendations on how to prevent suicide in autistic people
If you would like to receive news and updates please contact us: lp-mhautism@nottingham.ac.uk
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