Study Finds Increased Deaths Among People with Autism

A landmark Australian study published this week has found that people with autism spectrum disorder (ASD) are dying at more than twice the rate of the general population, indicating a major gap in the healthcare system. Autism spectrum disorder is a lifelong developmental disability which affects a person’s ability to interact with the world around them including social, communication and behavioural challenges.
Lonely little girl at home. Autism concept

There are wide-ranging levels of severity of ASD and varying characteristics. People with ASD can be predisposed to anxiety, depression and meltdowns while difficulties socialising can lead to isolation. Around 164,000 people in Australia have autism, and has risen 40 percent since 2012 largely due to improved diagnosis.

The study, which was funded by the Cooperative Research Centre for Living with Autism and published in the Autism Research journal, looked at the records of death of around 36,000 people with ASD aged 5 to 64 in New South Wales. Researchers found that mortality rates for those with ASD are 2.06 times that of the general population and that there is a higher risk of death for those who have additional mental and physical health conditions. The largest cause of death among people with ASD is from suicide, self-harm or accident. Injury and poisoning, including intentionally, accounted for 23 percent of all deaths. Self-harm and suicide accounted for 50 percent of deaths among people with ASD who did not also have an intellectual disability, compared with 13 percent of deaths in the general population.

The second top cause of death among people with ASD was found to be nervous system and sense disorders, such as epileptic seizures, which account for 20 percent of deaths compared to two percent in the general population. It is estimated that up to a third of individuals with autism spectrum disorder also have epilepsy. The increased death rate among people with ASD was evident across all age ranges included in the study. Although the study only looked at the population of one Australian state, it is expected that the same patterns exist on a national level.

Findings of the study have prompted researchers, family members and carers of people with ASD, and other advocates to call for more co-ordinated response and improved management of concurrent physical and mental health conditions. The researchers also indicated a need for better identification, diagnosis and documentation of older adults with ASD. They believe that many of the deaths among people with autism spectrum disorder are preventable and want to further analyse the use of health services and outcomes of people with ASD. In light of the study, advocates of people with ASD are calling for more training for workers in primary care, hospitals and mental health service providers around autism spectrum disorder.