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New research finds death rate higher for autism

The comparative mortality of people with autism spectrum disorder is twice that of the general population, an Australian-first study by a UNSW PhD student and her supervisors has found.

08 Mar 2019

The comparative mortality of people with autism spectrum disorder is twice that of the general population, an Australian-first study by a UNSW PhD student and her supervisors has found. The researchers call for a whole of health and disability systems response to this issue to improve outcomes for this group. 

In the big data study, the researchers analysed large linked datasets on death rates, risk factors and cause of death of 36,000 people on the autism spectrum in NSW. The results were published in Autism Research. The study was funded by the Cooperative Research Centre for Living with Autism (Autism CRC).

“Our key finding is that people on the autism spectrum have elevated mortality across the lifespan – their overall comparative mortality rate is about twice that of the general population,” said Professor Julian Trollor from UNSW Medicine and Chair of Intellectual Disability Mental Health. 

“This is of course 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.” 

The study also identified factors that influence mortality risk. 

“Risk of death was associated with autistic people’s health needs – people with co-occurring conditions such as chronic physical illness, epilepsy and mental health conditions were at a higher risk of death. People who also had an intellectual disability had a higher risk, too. 

“These insights are helpful because targeted strategies can be developed for those at higher risk. 

“Unexpectedly, and different to the general population, we didn’t find demographic factors such as gender and socioeconomic status to be predictors of risk of death.” 

The team also found that the top causes of death were different for people on the autism spectrum. 

The team says they now want to take the analysis of the data further. 

“While the top causes of death in the general population were cancer and circulatory diseases, for people on the spectrum we found that injury and poisoning – which includes accidents, suicide and deaths related to self-harm – was the single biggest cause of death, with nervous system and sense disorders (such as epilepsy) a close second,” Professor Trollor says. 

“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. Overall the high risk of death in people on the autism spectrum is a troubling indicator of the range of health inequalities experienced by this population.

“We'd like to be able to take this data and work back to understand the broader health requirements and unmet needs of this group. More resources would allow us to analyse health service use, health conditions and outcomes of people on the autism spectrum – not just focusing on death but also on overall health and pathways.” 

 


Published: 08 Mar 2019