According to the Centers for Disease Control and Prevention, one out of every 59 children in the United States is diagnosed with Autism Spectrum Disorder (ASD). After decades of research, much about this condition remains unclear. Researchers at the University of Utah Health conducted the first population-based study of suicidality in individuals with ASD in the United States. The 20-year retrospective study found that for individuals with autism, particularly females, the risk of suicide has increased through time compared to their non-autistic peers. The results are available online on January 17 in the journal Autism Research.

“There has been an unfortunate assumption that people with autism are in their own world and are not affected by social influences commonly associated with suicidality,” said Anne Kirby, Ph.D., OTRL, assistant professor of Occupational Therapy at U of U Health and first author on the paper. “There is now growing realization among clinicians and families that suicidal thoughts and behaviors can be a real concern for autistic individuals.”

During the study period (1998 to 2017), 49 individuals (7 female and 42 male) with autism died by suicide in Utah. The researchers broke the study into four five-year periods [(19982002: 2 males/0 females), (20032007: 5 males/ 0 females), (20082012: 14 males/ 0 females) and (2013-2017: 21 males/ 7 females)].

For the first three periods of the study, the relative risk of suicide between autistic and non-autistic individuals was similar. Beginning in the final period, the cumulative incidence of suicide among ASD individuals was significantly higher than non-ASD peers (0.17 percent compared to 0.11 percent). The increase is driven by suicide among women with autism, which was higher than the non-ASD population (0.17 percent compared to 0.05 percent). Unlike their non-ASD peers, individuals with autism were less likely to use firearms.

While these results suggest slightly elevated risk, the authors note that suicide is rare and is not necessarily a concern for all individuals with an autism diagnosis.

“While these results show us that those with autism are not immune from suicide risk, we are still working to understand the extent of this risk,” said Hilary Coon, Ph.D., professor in Psychiatry at U of U Health and senior author on the paper. “We do not yet have enough information to understand specific characteristics or co-occurring conditions associated with increased risk, so more research in this area is urgently needed to identify warning signs.”

The results of this study parallel a 2016 study out of Sweden, the only other population-based study that presented data on suicide death and autism. The Swedish study found suicide was a leading causes of premature mortality among individuals with autism.

In this study, Kirby used two unique Utah databases the Utah Registry of Autism and Developmental Disabilities and suicide surveillance data collected by the Utah Office of the Medical Examiner. The information from these databases was linked to the Utah Population database, a large, state-wide database containing demographic, vital records and medical and genealogical data since the mid-1980s.

Kirby notes this analysis may be limited by the on-going evolution of the definition and characterization of autism as well as the fact that the determination of suicide is made conservatively by the medical examiner. It also lacks additional data to control confounders factors, like anxiety and depression, which could affect the results of the analysis.

Shannon and Nancy read and discuss a recent article by “Love & Autism Conference” about the increased risk of suicide among the Autism community

 

Suicide rates among people with autism in England have reached “worryingly” high levels, according to experts writing in the Lancet Psychiatry today^1.

Writing ahead of a world-first international summit on suicidality in autism, the researchers – from Coventry and Newcastle universities – say the issue remains poorly understood and that action is urgently needed to help those most at risk.

Dr Sarah Cassidy from Coventry University cites a clinical study she led in 2014 – also published in the Lancet Psychiatry² – in which 66% of adults newly diagnosed with Asperger Syndrome (AS) reported having contemplated suicide.

In the same study – which remains the most recent clinical research into suicidality in autism – 35% of the 365 respondents newly diagnosed with AS said they had planned or attempted to end their own life, with 31% reporting that they suffered depression.

A 2016 population study in Sweden also concluded that suicide is a leading cause of premature death in people with autism spectrum disorder.

Dr Cassidy from Coventry University’s Centre for Research in Psychology, Behaviour and Achievement said:

“What relatively little we know about suicidality in autism points to a worryingly high prevalence of people with the condition contemplating and attempting to take their own life.

“More concerning still, the small body of research that does exist exposes serious shortcomings in how prepared we are to intervene and provide effective support to those with autism who are most at risk of dying by suicide.

“There are significant differences, for example, in the risk factors for suicide in autism compared with the general population, meaning the journey from suicidal thoughts to suicidal behaviours might be quite different.

“The models we currently consider best practise for assessing and treating suicidality need to be rethought for those with autism, and policy adjusted accordingly so new approaches are reflected across services.”

Co-author Dr Jacqui Rodgers from Newcastle University’s Institute of Neuroscience said:

“This unique event is of huge importance. For the first time researchers and clinicians from the fields of autism and suicide research will come together, along with members of the autism community and those bereaved by suicide, to learn from each other and identify clinical and research priorities to address this urgent issue.”

Jon Spiers, chief executive of autism research charity Autistica, said:

“For years society and the healthcare system have ignored the voices of families who have lost autistic loved ones unnecessarily, and far too young. Recent research revealing the sheer scale of the problem proves that we cannot let that continue.

“National and local government, research funders and industry, as well as the NHS and service providers all have a responsibility to tackle the issue of suicide in autism. Autistica is committed to playing a major part by funding mental health research programmes. This suicide summit will kick-start our campaign for change in this severely overlooked area.”

Coventry and Newcastle universities are running the international summit on suicide in autism – the first of its kind anywhere in the world – over the next two days, with funding from Autistica and the James Lind Alliance.

The aim is to develop recommendations for changes in government policy and practise that can be implemented quickly to reduce suicide in autism, and to decide on priorities for future research in the field.

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.

Many people with autism entertain thoughts of suicide and yet show few obvious signs of their distress. Some scientists are identifying risks — and solutions — unique to autistic individuals.

Nearly every Sunday since he was 7, Connor McIlwain had panicked about going to school the following day.

The noise of barking dogs or crying babies, the demands of school and the constant fear of being exposed to one of his phobias was a lot for Connor to handle. Diagnosed with autism at age 3, he would get so upset at school that sometimes he would run into the street; on at least one occasion, he narrowly escaped being hit by a car.

Connor’s mother, Lori McIlwain, recorded one of his Sunday-night tantrums when he was 10 to share with his doctor. “Poof me away. Poof me away,” Connor pleads in the audio clip, his voice strained. “I want to leave school forever. Throw me away forever; I really want to go away forever.”

The doctor offered suggestions on how to calm Connor and prescribed medication. Still, one day last year, Connor, then 17 and a sophomore in high school, became particularly distraught after a confrontation with a teacher. “We got the call from the school and picked him up,” McIlwain says. When he got home, he began trying to harm himself. “He told us, ‘I’m ready to die now,’ and said goodbye to us.”

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