A new study from the University of NSW Australia has found that people with autism spectrum disorder are dying at twice the rate of the general population. These very serious findings “have prompted the study researchers and advocates to call for a high-level, whole of system response to prevent these avoidable deaths.”1 The team studied data collected between 2001 and 2015, in what has been called the most comprehensive study of causes of death among Australians with ASD.
According to Professor Julian Trollor, senior study author and chairman of Intellectual Disability Mental Health at UNSW, this “major health gap”1 for people with ASD deserves a “co-ordinated, cohesive, high-level response”.1
Case in point, when Joshua Klumper was 15-years-old he was attacked by a stranger he had befriended who he thought was lonely. That traumatic event “triggered sudden major depressive episodes and repeated suicide attempts.”1 However, his expressionless poker face hid his serious struggles so, during multiple visits to emergency departments, healthcare workers had no idea what was really going on.
“In September 2017, during Josh’s final visit to an emergency department, a nurse told him ‘If you’ve had this problem all your life and we haven’t been able to fix you yet we are not being able to fix you tonight.’ The moment destroyed any hope Josh had that he could get help in the health system…”1
His mother reports that all he heard was “They can’t fix me.” Three days later, in 2017, he took his own life.
An analysis of the records of almost 36,000 people with the disorder in NSW showed:1
- Injury and poisoning, including suicide, self-harm or accident, accounted for 23 percent of all deaths among people with ASD
- and that number was 50 percent among people with ASD without intellectual disability
- nervous system and sense disorders were a close second top cause of death, most likely the result of epileptic seizures, accounting for 20 percent of ASD deaths (mostly those with ASD and intellectual disability)
- researchers found poor mental health, epilepsy and chronic physical illness were all independent risk factors for death among people with ASD
The NSW Mental Health Minister, Tanya Davies, said they would consider the findings of the study. Let’s hope that includes better training for primary care, hospital, mental health, and disability workforces so that they can “recognize and respond to the diverse needs of these patients.”1
And let’s hope we remember this as our exploding autistic population gets closer to the teen and adult years.