'I Couldn't Save My Son': Calls To Fix Autism Death Rates
WARNING: This story contains a discussion of suicide and suicidality.
The last words that broke Ursula Wharton's son before his death came from a nurse in an emergency department.
They were to the effect: "If you've had this problem all your life and we haven't been able to fix you yet, we won't be able to fix you tonight".
Josh Klumper was 17 years old and had Asperger's syndrome, an autism spectrum disorder that meant he was predisposed to anxiety, depression and meltdowns.
On a Saturday night in September 2017, he'd taken himself to hospital to seek help.
"A person like Josh has a very literal brain, so he interpreted that message as, 'no one can fix me'," Wharton told 10 daily.
Josh took his own life three days later.
In the years since, Wharton has been advocating for changes to the health system to prevent what she believes was her son's avoidable death.
It's a call echoed by researchers behind a landmark study that found people with autism spectrum disorders are dying at twice the rate of the general population.
The Australian-first study, published in a leading journal Autism Research on Wednesday, analysed the cause of death of 36,000 people on the autism spectrum in NSW.
UNSW Medicine's Professor Julian Trollor, Chair of Intellectual Disability Mental Health, said the overall high risk of death was not due to their being on the spectrum -- rather, their associated health needs such as chronic physical illness, epilepsy and mental health conditions.
The biggest cause of death was found to be injury or poisoning from suicide, self-harm or accident, followed by nervous system and sense disorders.
Troller described the results as a "troubling indicator" of the range of health inequalities experienced by this population.
The results were unsurprising for Wharton, who spoke of her ongoing frustrations trying to get adequate and appropriate care for her son.
Joshua was a "gorgeous, daring and intelligent" boy who was clever with his hands, yet spent much of his time trying to conceal his autism spectrum disorder.
His mother said he had anxiety from an early age that moved into depression in his teenage years, and often experienced meltdowns -- an intense response to overwhelming situations -- as well as sudden depressive episodes, and several suicide attempts.
But his facial expressions "didn't tell the full story" to healthcare workers who were often untrained in responding to patients on the spectrum.
"That last year of his life, we had very little help at all from the mental health service," she said.
"Joshua went to the emergency department three times that year, each time leaving without any real assistance"
"The last time was the straw that broke the camel's back."
Autistic health advocate Kathy Isaacs said every Australian deserves healthcare that is both readily accessible and accommodating of their individual needs.
"But this study confirms the sense within the Autistic community that this is not what is happening -- for this group in NSW, and for Autistic Australians," she said.
Wharton hopes the "solid figures" from the study will help sway healthcare providers and governments to act.
"As horrendous as it is for people who have children on the spectrum to hear, we have to talk about it and influence change because it is life threatening," she said.
"I've been there and I couldn't save my son."
If you need help in a crisis, call Lifeline on 13 11 14. For further information about depression contact beyondBlue on 1300 22 4636 or talk to your GP, local health professional or someone you trust.
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