"The burden of care of mothers as caregivers of ASD children leads to suicidal ideation among them"

I appreciate that the title heading this post - "The burden of care of mothers as caregivers of ASD [autism spectrum disorder] children leads to suicidal ideation among them" - derived from the findings reported by Bushra Akram and colleagues [1] is (a) a rather sweeping generalisation, and (b) not likely to be met with great enthusiasm by some/many people. I say that on the basis that words like 'burden of care' carry significant emotional meaning, even if only trying to describe "the psychological, emotional, social and economic challenges that are experienced by a caregiver of mentally or physically ill person."

Language aside, I did want to blog about the Akram findings because they represent another uncomfortable topic that needs to be talked about and further researched in relation to autism. They bring to our attention how parenting is not always about smiles, fluffy clouds and rainbows but sometimes can be bloody difficult. More so when something like autism is part and parcel of the family unit (see here and see here). Such recognition of reality is not meant to stigmatise anyone or devalue them as a person. It merely implies that burying heads in the sand for the sake of good PR or other reasons helps no-one in the long run. Least of all children. And in that respect, there seems a change recently (see here)...

I think you've kinda got the gist of what Akram et al were looking at in their study. They managed to recruit over 300 mums of children diagnosed with an autism spectrum disorder (ASD) from various cities in Pakistan. Diagnosis was apparently 'assessed' via DSM-5 criteria (see here). We're also told that: "Single mothers or those with more than 1 child with disability were excluded." Various questionnaires were delivered to participants - "the 19-item Burden Assessment [Scale]... (BAS), 12-item Multi-Dimensional Scale of Perceived Social Support...(MSPPS) and 5-item Suicidal Ideation Attributes Scale... (SIDAS)" - pertinent to the study aims. The quality of the translation of some of the instruments into Urdu was tested on a favourite cohort, psychology students.

Results: "The relationship between burden of care and suicidal ideation was positive, but perceived social support had a negative association with burden and with suicidal ideation." What this translates into is that if mums reported that a high score when it came to 'burden of care' so their scores regarding suicide ideation also seemed to be high. Also, if mums perceived themselves to have little or less social support, so they more more likely to experience a burden of care and/or suicidal ideation. This is important if not entirely unexpected.

Of course there are other potential explanations for the findings. Depression, something that seems to have some important links to something like suicidal ideation, was not looked at in the Akram study. Given some previous independent research on depression in parents/guardians of children with autism (see here), depression can't be discounted as playing an important role in suicidal ideation in this case. Likewise, factors such as money and employment would probably play some sort of role too. There are probably a myriad of other intrinsic and external variables to consider.

But let's not over-analyse this over-and-above the actual results obtained by Akram. They really do make a case of more 'caring for the carers' investigation and action (see here). Minus any psychobabble [2] it's the small things that can make a difference. Y'know, things like offering respite to parents/guardians (see here) and ensuring that in these days of a connected world, parents/guardians of children with autism are also connected too (see here). I know it's not politically correct in some quarters to mention it, but such data also make a good case for looking at what can be done to alleviate/reduce some of the more challenging behaviours that can make parenting a child with autism more difficult. Oh, and whilst on the topic of parenting, yes, there is a place for helping parents who are struggling to manage and cope via the teaching of various strategies, but please, leave off the 'super-parenting' stuff for now (see here). Many parents are already super-parents.

And whilst on the topic of caring for the carers, it's worthwhile mentioning that where an autistic child has siblings they also require 'parenting' attention too (see here)...

----------

[1] Akram B. et al. Burden of care and Suicidal Ideation among Mothers of Children with Autism Spectrum Disorder: Perceived Social Support as a Moderator. J Pak Med Assoc. 2019; 69: 504.

[2] Lee GK. et al. Needs, strain, coping, and mental health among caregivers of individuals with autism spectrum disorder: A moderated mediation analysis. Autism. 2019 Mar 20:1362361319833678.

----------

Autism 'disclosure cards' and negative judgements?

I have to say that I initially felt slightly uncomfortable reading the study results published by Jillian Austin and colleagues [1] providing "preliminary validation for the use of autism disclosure cards in buffering negative judgment." Uncomfortable because, despite the fact that it is human nature for people to stop, stare and perhaps question something when it seems 'out of the ordinary', the idea that when children with autism specifically 'misbehave' in a public place their parents need to somehow justify their child's behaviour to a staring crowd of strangers seems a trifle unfair.

As is the experience of most parents, whether their child is diagnosed or not with autism or anything else, children are not always 'little angels' every time they are out and about ("no, it is not appropriate to start a public conversation about farting when one 'catches a whiff' of something in the shopping centre"). Most parents can usually get away with a nervous smile to any interested on-lookers (or nosey parkers) and that really should be the end of it. Of course, for some children under some circumstances, behaviour can sometimes go beyond just tantrums and onward can raise a few eyebrows but...

Austin et al started with the premise that parents of children with autism are "increasingly using disclosure cards to reduce negative perceptions" when out and about with their children to make "an invisible diagnosis apparent". They devised an experiment using "vignettes of a parent-child interaction in which the child was misbehaving and investigated the efficacy on 160 parents' perceptions." Disclosure cards were provided to some of the parent participants all of whom had at least one child aged between 6-12 years. Various factors covering "Maternal Skill Deficit and Negative Reaction" and "Sympathy for Mother" were analysed as a function of receipt of disclosure cards or not.

"Those who received the disclosure card reported significantly lower Maternal Skill Deficit and Negative Reaction to the Dyad and no difference in Sympathy for the Mother." In other words, making an 'invisible' diagnosis more visible seemed to have an effect in terms of views around 'it must the parent's fault that their child is behaving that way' (negative judgement) but did little when it came to empathising with the mother's position in that situation.

Austin and colleagues discuss how the 'invisibility' of autism and frames of reference - "people will evaluate and compare individuals to some perceived norm or standard" - in this case, so-called typically developing children, may be driving forces underlying those negative judgements from others about children on the spectrum and their parents. I can't quibble with this line of thought or what impact it might have on children and their parents (and other significant others). But it strikes me that in these days of increased numbers of children being diagnosed with autism (see here) - indeed the numbers just keep on growing - and accompanying high-profile campaigns to raise awareness about autism, movement towards the idea that every parent has to 'identify' their child as being on the autism spectrum as and when they, pardon my French, 'fart the wrong way' seems to place too much emphasis on the child and parent and not enough on their fellow citizens and their own understanding and reactions.

OK, I get that people have busy lives and that outside of media depictions (see here), most people wouldn't typically ask 'could it be autism?' when a child has a 'meltdown' in a public spot. I also get that under some circumstances, making particular groups of people aware of a person's autism might be a good thing as per contact with law enforcement agencies for example. The question however of whether strangers really need to be given quite sensitive information about a person and 'their diagnosis' just because they (the stranger) 'can't deal with a particular situation' strikes me as being more than a little one-sided...

----------

[1] Austin JE. et al. Influencing Perception About Children with Autism and their Parents Using Disclosure Cards. J Autism Dev Disord. 2016 May 30.

----------

Austin JE, Zinke VL, & Davies WH (2016). Influencing Perception About Children with Autism and their Parents Using Disclosure Cards. Journal of autism and developmental disorders PMID: 27241346

Parents on the autism spectrum and 'parenting efficacy'

There are some aspects of the autism research landscape that make for uncomfortable reading. I've covered a few of them on this blog (see here and see here for example) simply because of my belief that science should not be afraid to ask about and try and answer difficult questions.

I'd place the paper by Winnie Yu Pow Lau and colleagues [1] in that uncomfortable reading zone as a consequence of their findings related to parenting efficacy as a function of parents who themselves have been diagnosed with an autism spectrum disorder (ASD) among other groupings. With one Tony Attwood on the authorship list, results are reported suggesting that whilst "mothers with ASD had comparable levels of parental efficacy to parents without ASD in the family" fathers with an ASD "had the lowest parental efficacy." The authors recommend that further screening and provisions should be put in place "to build fathers parental efficacy" minus any sweeping generalisations from this data. Parenting efficacy by the way, is thought to be a strong predictor of parenting behaviours potentially onwards being related to various offspring outcomes.

As I've mentioned before on this blog, parenting is already a tough job even before any additional issues related to offspring behaviours or diagnoses are added to the mix (see here). Most parents do a good job navigating the various stages of child rearing and would probably have little or no regrets about the way that they eventually did the job. For many parents, to be told about any perceived weaknesses or 'failings' of parenting ability is generally not likely to be taken well considering the amount of time and effort that is devoted to raising a brood. Blood, sweat and tears people...

It is with that sentiment in mind that I tread carefully with the Lau findings whilst at the same time acknowledging that parenting efficacy does perhaps need to be further researched under such circumstances. With the ever-increasing numbers of people being diagnosed on the autism spectrum, it is, by mass action, inevitable that more and more adults with an ASD are going to be raising families of their own. There are some quite high profile examples of parents on the spectrum raising children on or off the spectrum and doing it very well, but one should not assume that every family is fortunate to be the same, particularly when one takes into account individual family circumstances (lone parents, more than one child) and factors such as income and housing among others. The emphasis should rightly be on supporting those families when support is needed [2] whilst not coming across as too 'nanny state' or condescending; keeping in mind that the welfare of children is central to all this.

As a last point, I am going to query the use of the Autism Spectrum Quotient (AQ) in the Lau study as a measure of autistic traits. This instrument may well cover elements of the autism spectrum but (and it is an important 'but') the presence of those traits might not necessarily be exclusive to autism (see here). From that point of view, further research needs to perhaps be a little more thorough about what exactly is being investigated, also understanding that a historical diagnosis of autism might not necessarily be set in stone and that the diagnosis rarely appears in a diagnostic vacuum - both factors that might impact on the stability of parenting efficacy. Indeed, with that last point in mind, the findings reported by Samyra Jogaib Bonatto and colleagues [3] on [self-reported] ADHD symptoms in parents of children with autism, are also deserving of quite a bit more allied scrutiny too.

Music to close, and what else but something that Papa's the world over with have probably heard...

----------

[1] Lau WY. et al. Parents on the autism continuum: Links with parenting efficacy. Research in Autism Spectrum Disorders. 2016; 26: 57-64.

[2] Chong WH. & Kua SM. Parenting Self-Efficacy Beliefs in Parents of Children With Autism: Perspectives From Singapore. Am J Orthopsychiatry. 2016 Apr 14.

[3] Bonatto SJ. et al. The prevalence of symptoms of attention-deficit/hyperactivity disorder in parents of children with autism spectrum disorder. Psychiatry Research. 2016. April 5.

----------

Lau, W., Peterson, C., Attwood, T., Garnett, M., & Kelly, A. (2016). Parents on the autism continuum: Links with parenting efficacy Research in Autism Spectrum Disorders, 26, 57-64 DOI: 10.1016/j.rasd.2016.02.007