Monday 19 January 2015

Taking care of mum following receipt of an offspring autism diagnosis

The commentary by Elizabeth Karp & Alice Kuo [1] recently published in JAMA brought my attention back to the 2014 findings from Emily Feinberg and colleagues [2] (open-access) reporting on: "positive effects of PSE [problem-solving education] in reducing parenting stress and depressive symptoms during the critical postdiagnosis period" - that is, moves to taking care of maternal mental health after a child receives a diagnosis of autism or autism spectrum disorder (ASD).
This is Jessie, the roughest, toughest
cowgirl in the whole west.

As per the UK National Autistic Society (NAS) guidance: "An autism diagnosis can be difficult to come to terms with" in light of the impact on both parents, siblings and significant others. The guidance continues: "It will take time to learn how to help your child and family cope with day-to-day life. You have the right to feel annoyed or frustrated. It’s hard to remain positive when things don’t go as planned and it is natural to feel upset."

Such are the sentiments voiced by many parents as and when a child is diagnosed with autism. Without wishing to demonise or other -ise the label, some groups have talked about a period of 'grief' being associated with receipt of the diagnosis (see here) at the early stages of the journey and the various adjustments that will often need to be made. During such times, parental and sibling physical and mental health can be adversely affected.

The Feinberg study is open-access, but a few details might be useful:

  • Mothers of 122 children who had recently received a diagnosis of autism/ASD were the study participants. They were randomly assigned to receive PSE (n=59) or "usual care" (n=63). PSE by the way, is "a manualized cognitive behavioral intervention" which focuses on identifying "a single, measurable problem" to "then proceed through a series of steps that involve goal setting, brainstorming, and evaluating solutions, choosing a solution, and action planning." The authors have some previous research form in this area [3]. Usual care by the looks of things involved the focus on the child and their needs/requirements but nothing "specifically includes parent-focused mental health services."
  • Various measures were analysed according to the use of PSE or usual care including parenting stress "using the Parenting Stress Index Short Form (PSI)", the amount of depressive symptoms experienced and coping style among other things.
  • Results: "At the 3-month follow-up assessment, PSE mothers were significantly less likely than those serving as controls to have clinically significant parental stress." Very good news by all accounts. With regards to depressive symptoms, "the difference by treatment arm in the risk of experiencing clinically significant depressive symptoms approached statistical significance." For scientific puritans, the emphasis is on the word 'approached' rather than 'reached' statistical significance. That being said: "the reduction in mean depressive symptoms was statistically significant" favouring the PSE group.
  • The authors are rightly cautious about their findings, especially when it comes to the need for longer term follow-up of their intervention/non-intervention groups and the suggestion that further inquiry might be needed to identify best-responders. They conclude however: "Despite the limited scope of the present analysis, the findings are encouraging."

With all the chatter about autism research becoming truly translational in terms of bringing findings out of the science world and into the real world, this kind of study strikes me as being particularly important. Without trying to get too tangled up in the psychology speak of the mother-child relationship, evidence suggests that family processes and in particular, the mother-child relationship, can have some bearing on outcome when it comes to autism (see here). Caregiver stress and/or depression is likely to impact on such processes and hence, anything that can alleviate any excesses should be cautiously viewed as a positive thing. Stress has also been mentioned in more extreme ways too.

That being said, I'm not necessarily advocating that a 'manualized cognitive behaviour intervention' is the be-all-and-end-all of approaching maternal mental health and wellbeing when it comes to autism. There are lots of other ways that this can be [variably] achieved from something like a stress point of view, as per other discussions (see here). Again from the NAS guidance: "Try to get some time on your own to relax, even if it is just to walk the dog or do the washing up, and try not to feel guilty about doing this. Everyone deserves some time out to recharge the batteries." 'Washing up' I might add, is not a mother-only task, but the sentiments of 'stepping back' and keeping home routines as intact as possible are potentially important features of the adaptation phase. Autism research needs to catch-up [4].

Now, about paternal health and wellbeing [5] (sorry about the slightly archaic language)...

And because today is supposed to be Blue Monday (or not), here's Blue Monday by New Order.


[1] Karp EA. & Kuo AA. Maternal mental health after a child's diagnosis of autism spectrum disorder. JAMA. 2015 Jan 6;313(1):81-2.

[2] Feinberg E. et al. Improving maternal mental health after a child's diagnosis of autism spectrum disorder: results from a randomized clinical trial. JAMA Pediatr. 2014 Jan;168(1):40-6.

[3] Feinberg E. et al. Adaptation of problem-solving treatment for prevention of depression among low-income, culturally diverse mothers. Fam Community Health. 2012 Jan-Mar;35(1):57-67.

[4] Dykens EM. Family adjustment and interventions in neurodevelopmental disorders. Curr Opin Psychiatry. 2015 Jan 15.

[5] Fisman S. & Wolf L. The handicapped child: psychological effects of parental, marital, and sibling relationships. Psychiatr Clin North Am. 1991 Mar;14(1):199-217.

---------- Feinberg E, Augustyn M, Fitzgerald E, Sandler J, Ferreira-Cesar Suarez Z, Chen N, Cabral H, Beardslee W, & Silverstein M (2014). Improving maternal mental health after a child's diagnosis of autism spectrum disorder: results from a randomized clinical trial. JAMA pediatrics, 168 (1), 40-6 PMID: 24217336

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