People who hide their autism by ‘camouflaging’ to try to fit into society, or who don’t receive correct support are at higher risk of suicide, according to new research.
Researchers from the University of Nottingham’s School of Psychology and the Universities of Coventry and Cambridge worked closely with a group of autistic people who had experienced mental health problems, self-injury or thoughts of ending life, to design a new innovative study that has just been published in the journal Molecular Autism.
The survey-style study, funded by the Economic and Social Research Council (ESRC), found there were important factors that are unique to being autistic which explain why autistic people may be at higher risk of suicide, including; unmet support needs, and ‘camouflaging’ or ‘masking’ autism to try and ‘fit in’ in social situations. Other factors found were similar to those experienced by the general population such as self-injury, depression, and dissatisfaction with living arrangements.
Although there has been a growing amount of research showing that autistic people are more likely than people in the general population to take their own lives, until now there has been a lack of research exploring the reasons why.
Camouflaging to fit in
Dr. Sarah Cassidy led the study at the University of Nottingham and said: “To understand and prevent death by suicide in the autistic community, we must work with autistic people as equal partners in research, to ensure it is relevant and benefits those involved. Growing research is showing that mental health services are failing autistic people, even when they are feeling suicidal. Our research suggests that this lack of support can also increase suicidal feelings. An urgent priority is to address this gap in service provision.”
Jon Adams, a mental health champion involved in the study said: "I've had to live breathe and navigate a society that has often been without informed understanding towards autistic people. All my life in order to survive I've had to 'be someone I'm not' and this effort takes a toll on your inner being and confidence. We don't want to 'leave', for us it's not a statement or a cry for help, we just desire fulfilled lives as ourselves, but we are abraded to the point of absolute despair feeling 'leaving' has become the only option. Then in our 'hours of need’ we find the system meant to support us makes 'staying' harder by adding to the misunderstanding or are just absent. This has to change especially for the next generations of autistic people, so they don't accumulate the hurt we older autistic people have. This research is so vital for our survival and if actioned with appropriate support would bring both richness and worth to all of us, autistic and non-autistic alike"
Dr. Rebecca Shaw, a collaborator on the study at Coventry University and Coventry and Warwickshire NHS Partnership Trust, said “Autistic people are encouraged from an early age to ‘camouflage’ their difficulties, to fit in better with others. Although these efforts of researchers and clinicians are well meaning, we must be careful of the message we are sending autistic people, that their true self is not acceptable in society. We must work with the autistic community to build a more compassionate society that is more accepting of neurodiversity, so autistic people feel that they belong.”
Professor Simon Baron-Cohen at the University of Cambridge was also a collaborator and commented: “It is totally unacceptable that autistic people are born into our society as happy individuals and that by the time they reach adolescence or adulthood many of them have felt so battered by society that they no longer see any point in living. It is not for autistic people to change: it is for society to change, to become more welcoming to people who are neurologically different, neurologically more sensitive, and who struggle with disabilities related to socialising, communication, and coping with unexpected change. This urgent change has to start from preschool onwards. A single death by suicide of an autistic person is a tragedy and is one too many.”
Dr Sarah Cassidy’s Suicide and Autism Research Program works closely with the autistic community, National Autistic Society, Autistica, PAPYRUS, the James Lind Alliance priority setting partnership, the All Party Parliamentary Group for Autism, and the International Society for Autism Research Policy Brief 2019.
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