Caring for the carer: what the science suggests

Papers such as the one published by Nikko Da Paz & Jan Wallander [1] I think represent one of the most important areas of autism research and practice when it comes to the practical translation of science to real-life. Tackling a very important topic - caring for the carers - the authors provide a "narrative review" of the peer-reviewed science literature looking at how "treatments that directly target parents' psychological well-being" in the context of autism are doing so far.

Personally, I don't like the use of the word 'treatment' in this context because it implies that caring for the carers is akin to tackling some sort of disease. It's not. It also 'medicalises' the experience of caring for/raising children on the autism spectrum which I don't think anyone really wants to do. I might suggest that 'intervention' could be a better word to use.

Da Paz and Wallander reported on "a total of 13 studies, seven randomized controlled trials (RCTs) and six pre-post test designs" that looked at various interventions pertinent to improving parent stress and reducing instances of depression and anxiety. They report: "Interventions that appeared promising included: Stress Management and Relaxation Techniques, Expressive Writing, Mindfulness-Based Stress Reduction, and Acceptance and Commitment Therapy" with some important caveats. Not least that if English is not your language of choice and/or you are not aged between 39-42 years old, the evidence base is rather sparse when it comes to what might be useful or not for managing your psychological health. In light of other research [2] there is quite a bit more to do in this area.

Accepting that the publishing journal - Clinical Psychology Review - gives a rather large hint as to why the listed 'psychological' interventions were focused upon, I might also add a few comments about how other science and practice might also aid parents raising children on the autism spectrum. I've for example, covered the topic of respite care and parent stress before on this blog (see here) and how depending on your definition of respite, there is perhaps some value in either the utilisation of short break facilities or the use of domiciliary care/support where available. As per my previous discussion of this area, there is a rather large stumbling block to any talk about respite care insofar as in these austere times in which we live, some of the first social services that seem to suffer when budgets need to be reduced are respite services.

I'm also minded to bring in the idea that outside of psychological techniques potentially impacting on parenting stress and any adverse outcomes, one might also look at more physical interventions too. So, for example, exercise is something that could be a rather useful intervention to look at given the pretty strong research links being forged between body and mind. The thing about exercise is that (a) depending on what regime you choose costs can range from free to expensive, and (b) there are a whole host of other factors potentially tied into a chosen sport, based on the choice of solitary sports vs. group sports for example and other factors. That various health agencies are already shifting when it comes to notions of potentially 'prescribing exercise' for something like depression and anxiety (see here for example) reflects how valuable moving a little more might be to lots of groups.

I would champion the idea that quite a few more resources need to be put into caring for the carers when it specifically comes to parenting and autism. This is not about further 'blaming autism' for parenting stress or adverse outcomes but rather acknowledging that parenting whether in the context of autism or not, is a sometimes difficult task. And nobody benefits if parents/carers are just left to fend for themselves without the appropriate help and support...

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[1] Da Paz NS. & Wallander JL. Interventions that target improvements in mental health for parents of children with autism spectrum disorders: A narrative review. Clin Psychol Rev. 2016 Oct 27;51:1-14.

[2] Zuckerman KE. et al. Pediatrician identification of Latino children at risk for autism spectrum disorder. Pediatrics. 2013 Sep;132(3):445-53.

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Da Paz NS, & Wallander JL (2016). Interventions that target improvements in mental health for parents of children with autism spectrum disorders: A narrative review. Clinical psychology review, 51, 1-14 PMID: 27816800