An Australian first study led by the University of New South Wales (UNSW) and PhD scholar Jane Hwang has found the mortality rates in people on the autism spectrum are double those of the general population.
Funded by the Cooperative Research Centre for Living with Autism (Autism CRC) the study collected data on 36,000 people with autism living in New South Wales and revealed the co-occurring health conditions, factors that influence mortality risk and causes of death.
UNSW Medicine and Chair, Intellectual Disability Mental Health, Professor Julian Trollor says the findings are “of great concern”.
“While we only looked at NSW data, we’d expect to find the same patterns nationally.
"It’s important to note the results do not point to elevated mortality for autistic people as a result of their being on the spectrum.
“Rather, the results indicate there needs to be a greater understanding of autism and co-occurring conditions within the health services sector, and that more equitable access to health services needs to be a priority for government and health service providers,” Professor Troller says.
The study also revealed cancer and circulatory disease as the top causes of death for the general population, whilst for people with autism, injury and poisoning, including accidents, suicide and deaths resulting from self-harm were found to be the top cause of death.
“Combined with the information about mental health being a risk factor for death, the higher proportion of deaths from injury and poisoning may point to unmet mental health needs that this group is experiencing,” Professor Trollor says.
Chief Executive Officer (CEO) of Autism CRC Andrew Davis says the study is the first known use of large linked datasets to investigate mortality and cause of death for people on the autism spectrum.
“This is an issue, as understanding the drivers of excess mortality is important for those on the spectrum – and for those who support them, such as family members, health professionals and policymakers.
“This is particularly important where the deaths may be preventable,” he says.
Autistic health advocate Kathy Isaacs says the findings should serve as a call to action for government and health service providers.
“Every single 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 says a comprehensive health and disability service response is required to ensure people with autism are adequately supported and their health needs are met.
“From a broader perspective, we need to ensure that all of our system-level health promotion and preventative health programs are accessible, that the bare minimum goal of autism awareness is met for all staff, and finally, that people on the spectrum are consulted and involved at all stages of health policy development.”
CEO of Autism Awareness Nicole Rogerson says it’s critical to address the co-occurring conditions that are causing these deaths and work to prevent this through good understanding and management.
“So many of these tragedies would be avoidable if we better understood individuals with autism and managed their needs and supports accordingly.
"Autism is complex...there is no easy fix here but a better understanding and planning for a range of complex physical and mental health issues will literally save lives.
“We owe it to our loved ones with autism to ensure they live healthy, long lives and that we don't fail them by merely mis-managing their care.
“So much of this is preventable, not all of course, but what we can change, we should with great urgency.
"In a modern-day Australia, our community deserves so much better. These are our children, we must not fail them once they have grown into adults," she says.
The report was published today in the leading academic journal, Autism Research.