What will happen to my child when I'm gone?

From time to time I cover some uncomfortable topics on this blog as a function of what hand the autism research cards deal. Today is another one of those times as I bring to your attention the paper by Cathy Cox and colleagues [1] and their analysis of death concerns and psychological wellbeing in mothers of children diagnosed with an autism spectrum disorder (ASD).

What they observed based on completion of a "fear of death scale" and "measures of death-thought accessibility, positive and negative affect, depression, and anxiety" by some 70 mums of children with autism and 70 mums of "typically developing children" suggested that more investigation in this area is required. Aside from reporting "worse psychological health" than control mums, the autism mums group "evidenced greater death-thought accessibility" that in turn "mediated the influence of ASD diagnosis on negative affect, depression, and anxiety." In other words: "increased death-thought accessibility among mothers of children with ASD was associated with worse psychological health."

Thinking about one's own mortality and the idea that our time on this dusty rock called home is finite is not an uncommon feature of life. Death is a daily feature of life as any newspaper or news website informs us. Specifically with autism in mind, various viewpoints have been published by parents of children with autism on the topic of death concerns and the important question: what will happen to my child / children when I'm gone?

This is an uncomfortable question to try and answer given the multitude of factors around things like provisions, finances and family circumstances including the role that any siblings may need to play. That also a parents death will inevitably affect the child (or adult) with autism serves to further complicate any response. It's perhaps not surprising that some parents have written some fairly extreme material with titles like 'Why I can never die' when it comes to this topic.

There is no easy way through this important subject. Cox et al talk about how training care providers to "better discuss thoughts of death may help to alleviate stress and foster greater psychological well-being" for parents of children with autism as being one answer. I agree that death needs to figure more in conversations but am slightly unsure as to how talk without positive action and planning is going to put minds at rest and reduce an already heavy burden of stress and risk of adverse psychological health. That there may also be some fairly unique circumstances associated with the presentation of anxiety in some mums [2] (see here for further reading on intolerance of uncertainty) perhaps adds to the requirement for quite a bit more study and action in this important area.

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[1] Cox CR. et al. Death concerns and psychological well-being in mothers of children with autism spectrum disorder. Res Dev Disabil. 2015 Aug 6;45-46:229-238.

[2] Uljarević M. et al. Brief Report: Effects of Sensory Sensitivity and Intolerance of Uncertainty on Anxiety in Mothers of Children with Autism Spectrum Disorder. J Autism Dev Disord. 2015 Aug 9.

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Cox CR, Eaton S, Ekas NV, & Van Enkevort EA (2015). Death concerns and psychological well-being in mothers of children with autism spectrum disorder. Research in developmental disabilities, 45-46, 229-238 PMID: 26256841