The title of the research paper by Jenny Fairthorne and colleagues* based at the Telethon Kids Institute at the University of Western Australia does not exactly make comfortable reading: ‘Early Mortality and Primary Causes of Death in Mothers of Children with Intellectual Disability or Autism Spectrum Disorder: A Retrospective Cohort Study’.
Reporting results based on the analysis of some 300,000 mothers with live-born children living in Western Australia between 1983-2005, researchers identified those mothers with a child diagnosed with autism and/or intellectual (learning) disability and compared “dates and causes of death for all mothers who had died prior to 2011.” After correcting for various confounding variables, researchers concluded that “mothers of children with intellectual disability or ASD [autism spectrum disorder] had more than twice the risk of death” of that of a comparison group with no offspring diagnosis of ASD or intellectual disability during the study period.
Those mothers with a psychiatric diagnosis – defined as “outpatient clinical psychiatric contact or a hospital admission in relation to a psychiatric diagnosis” – and a child diagnosis of ASD or intellectual disability fared worst when it came to the mortality statistics. The primary reasons for death were cancer, misadventure and cardiovascular disease.
The authors speculate on the various reasons why early mortality might be more likely in their cohort of mothers with children with a diagnosis concluding that: “these increased hazards may be related to the increased stress of raising a child with these disabilities.” They also suggested that underlying genetic or biological issues potentially linked to their child’s diagnosis may increase the risk of early mortality.
As uncomfortable as such research might be to read, there are some potentially valuable lessons to be learned from the data. Moves to reduce or mitigate the burden of stress and issues such as depression where present in parents with children with disabilities should rank high on the list of what society can do. This could be achieved through dedicated programs to increase resilience and positively affect parental coping strategies and/or increasing access to important services such as respite care. Initiatives such as offering a suitable social support network or something as simple as providing time and access to ‘me time’ for exercise or leisure time for example, might also be useful approaches. A greater focus on parental health screening is also implied from the Fairthorne results.
* Fairthorne J. et al. Early Mortality and Primary Causes of Death in Mothers of Children with Intellectual Disability or Autism Spectrum Disorder: A Retrospective Cohort Study. PLoS ONE. 2014; 9(12): e113430.