Policy Briefing
The INSAR Policy Brief is funded by the International Society for Autism Research, with the kind support of Autistica who supported our engagement costs to ensure equal representation of autistic people at our event.
Until recently there has been little research exploring how to prevent suicide in autistic people. It is really important that we identify priorities for future suicide in autism research and public policy, in partnership with those affected. We secured funding to identify research and policy priorities to prevent suicide, in partnership with autistic people and their allies.
We asked stakeholders to rank their top priorities for research, and tell us what they think needs to change. Potential research areas were identified at our 1st International Suicide in Autism Summit (funded by Autistica), attended by autistic people, the autism community, clinicians, researchers, charities and service providers.
Following this survey we hosted a two day meeting at The University of Nottingham, to identify the top 10 research priorities, and to discuss future international policy initiatives. This priority setting exercise and meeting are conducted in association with the James Lind Alliance.
We published the results of this work in a Policy Brief. This policy brief provides an overview of current suicide in autism research and international policy initiatives, community priorities for public policy to prevent suicide in autistic people, and recommendations for next steps.
We also published a report specifically aimed to help researchers and funders to address the top 10 autism community priorities for suicide prevention, available here.
We have also published an editorial in the Journal of Autism and Developmental Disorders. This editorial discusses our progress in self-harm and suicide research in autistic people in light of community priorities. We also discuss next steps for future research to better understand and prevent self-harm and suicide in partnership with autistic people and those who support them.
How did the prioritisation work? Watch our video of the process to find out!
What did people who attended our two day event think? Watch our video below to find out!
The Top 10
After the hard work of all the stakeholders involved over the past few years, on the 4th & 5th April 2019 we identified the following Top 10 research priorities for preventing suicide in autism.
1. What barriers do autistic people experience when seeking help which may put them at greater risk of suicide?
2. What are the risk and protective factors for suicide in autism across the lifespan?
3. To what extent are autistic people not believed about the severity of their distress?
4. How can we further understand suicide where mental health is not a factor across the lifespan?
5. How can we best identify and assess suicidal thoughts and suicidal behaviours in autistic people, in research and clinical practice?
6. How should interventions be adapted for autistic people and individual presentations?
7. What is the experience of suicidality in autistic people? Is this experience different to the general population?
8. How do autistic people seek help when they are in a crisis?
9. How well do existing models of understanding suicide apply to autistic people?
10. What is the impact of poor sleep on suicide risk in autistic people, and how can this be measured?
Our Partners
INSAR
The International Society for Autism Research provides scientific collaboration, mentorship, and education to better the lives of the individuals and families living with Autism Spectrum Disorder (ASD).
INSAR membership is open to individuals engaged in academic or research activities, graduate students and post doctoral researchers, and others vested in the study of autism spectrum disorders (ASDs).
Mission Statement: To promote the highest quality research in order to improve the lives of people affected by autism.
James Lind Alliance
The James Lind Alliance (JLA) is a non-profit making initiative established in 2004. It brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the Top 10 unanswered questions or evidence uncertainties that they agree are the most important.
The aim of this is to make sure that health research funders are aware of the issues that matter most to the people who need to use the research in their everyday lives.