"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)...

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[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.

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"Theme 3: Inadequate Provision for Post-diagnostic Support" for autism

The qualitative findings reported by Laura Crane and colleagues [1] on the topic of autism diagnosis here in Blighty provide some useful information that *could* help make the diagnostic process easier and more 'user-friendly'. The findings also highlight some important gaps in the current mechanisms being utilised...

The paper is open-access but basically set out to examine "the views and experiences of ten autistic adults, ten parents of children on the autism spectrum, and ten professionals involved in autism diagnosis, all based in the United Kingdom (UK)." You'll note that the participant numbers for each individual category weren't huge so one has to be slightly cautious about how representative the results are to the wider autism spectrum. Indeed, although not a fan of the term 'functioning' in relation to autism, I note that only two of the children were diagnosed with a learning (intellectual) disability and over half were diagnosed with Asperger syndrome. Alongside the report that of the 10 adults interviewed, nine were diagnosed with Asperger syndrome and several were educated to degree level or above (4/10), and you might reasonably conclude that this was a study weighted towards the more 'able end of the autism spectrum'. I say that again minus the use of the 'functioning' label but understanding that there are 'parts' of the autism spectrum still very much under-represented in this and other research areas (see here)...

No mind, the authors discuss the themes that emerged during telephone interviews with regards to "three important stages of the diagnostic pathway: (1) accessing a diagnostic service; (2) the diagnostic process; and (3) post-diagnostic support." The results are revealing...

I've zoomed in on one of the themes that emerged from the study: "Theme 3: Inadequate Provision for Post-diagnostic Support." I did this because this is the part of the diagnostic machinery that probably has the longest-term effects and has been covered before on this blog (see here). It's not that I don't for example, accept the importance of "vague and inconsistent routes available for accessing an autism diagnosis" or "professionals’ tendency to focus on negatives, not positives". Merely that post-diagnosis, many children and adults are seemingly left to fend for themselves and/or take up further battles in order to get the help and support they require. This, set in a time of increasing need and continuing finite resources (see here).

Within theme 3 around post-diagnostic services and support, we hear some familiar stories. So: "Getting the diagnosis is only the start of the journey and as far as the paediatrician was concerned, that was the end of the journey" and "[you need someone] to support you and direct you…this is where the system fails" are just two of the examples included in the Crane paper. In other words, tick boxes for getting assessments and diagnoses are ticked, but then 'don't let the door hit you on the way out' sentiments seemingly follow. That's not to blame assessment teams or diagnosing clinicians who do a sterling job often under pressure (see here), merely to point out how the system is current set out.

Another phrase included by the authors adds to the 'inadequate provision' sentiments expressed: "When services were made available to support autistic people and their families, these tend not to be offered until crisis point was reached." It seems that one has to be literally be at the end of ones tether before anything like the resources needed are given out, and even then, in a reactive sense. And thereafter: "when support was provided (and was felt to be useful), financial constraints sometimes meant that services were withdrawn". Such issues were seemingly spread across both child and adult experiences, as the call for "a solid, government-backed organisation that could help rather than these sort of variegated charities that are all struggling financially" went out. What a good idea: a national post-diagnosis autism agency...

I'm also going to highlight the 'lack of emotional support' picked up in the Crane paper. The adults diagnosed with autism certainly "found their involvement in the assessment process both emotional and challenging" because sometimes the very probing questions used as part of the assessment process brought up things that some people were probably trying very hard to forget. I personally think that this is an under-appreciated side of post-diagnosis in the context of autism, where the diagnosis of post-traumatic stress disorder (PTSD) is perhaps 'under-used' (see here) in light of the effects of past traumas (I use the word 'trauma' minus the psychobabble connotations).

Crane et al also provide a dose of reality in terms of what parents go through too before, during and after the diagnostic process for their children. So: "I was literally on my knees anyway…it’s so tiring having boys with Aspergers" and "I felt quite on my own. No-one in my family really understood, I didn’t have any friends that had had similar experiences." Such reports are just as important as the other reports included in their study; illustrating how having a child diagnosed with autism can be a roller coaster of emotions, and the strong requirement for "whole family support needs" including things like respite care (see here). I say all this set against a backdrop, particularly on social media, where parents are sometimes/often castigated for speaking their truth and their reality about raising children on the autism spectrum, seemingly because their narrative doesn't fit the agenda of others. Yes, the views of people with autism / autistic people count, but so do the views of those who raise them too (see here). And social media 'discussions' for example, about 'informed consent' before posting pictures and reciting specific child-rearing events, whilst important, cannot just be solely applied to parents of autistic children either...

There are seemingly lots of things that can be done to improve the diagnostic and post-diagnostic experiences related to autism on the basis of the Crane findings. One would hope that policy - (peer-reviewed) evidence-based policy - would be listening and wanting to change things for the good of all concerned: those on the autism spectrum, their parents and other loved ones and the professionals who do a remarkable job with all-too finite resources. I fear however, that the reality is yet again going to be tied into one solitary question; a question that crops up time and time again: how much is it all going to cost?

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[1] Crane L. et al. Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals. J Autism Developmental Disorders. 2018. June 12.

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Risk of premature death and autism: some reflections

"People with autism 'die younger', warns charity" went the very stark BBC headline recently.

Today I'd like to bring your attention to the recent report published by Autistica titled: 'Personal tragedies, public crisis' making the headlines, highlighting how people with autism face a considerably enhanced risk of early mortality compared with the general population [1] (see here for my take).

Although making quite sober reading and rightly using some very emotive language, I think most people would welcome this report in highlighting an issue that for too long has seemingly been 'brushed under the carpet'. I've talked about early mortality and autism a few times on this blog (see here) and how it potentially intersects with other issues such as wandering/elopement (see here) and access to appropriate medical care that takes into consideration the manifestation(s) of autism (see here). The bottom line being that for some people, autism and/or the 'effects' of autism for whatever reason, can be life-limiting as well as life-changing. I know that last sentence might not make a great autism awareness message but lives are being needlessly lost. Indeed, I wonder whether with World Autism Awareness Day approaching, that should be a primary message this year and every year...

I appreciate the calls for further research on the issue of premature mortality and autism highlighted in the Autistica report and how for example, we do need to know more about the prevalence of early mortality in relation to autism here in the UK. I'm fearful however that potentially spending years (and precious monetary resources) waiting for such prevalence data to be forthcoming does little for those at risk here and now. Indeed, the more important issue of how to reduce (eradicate) the early mortality risk in relation to autism, is something that I would particularly champion and what this might mean for the way we think about autism in terms of the provision of screening and intervention and providing greater social and health support for those on the spectrum (and their families and loved ones).

Epilepsy and suicide are discussed as important causes of death when it comes to autism in the published report but are not then only ones. Accepting that suicide - ideation or completed - is a complex act with many potential roads bringing a person to such a final decision (see here), one of the primary opportunities for reducing suicide risk has to be to screen for comorbid symptoms/diagnoses that might enhance such risk. Y'know, things like depression (see here) in light of where that can potentially lead; taking into account that the label depression covers quite a bit of diagnostic ground and might not always appear as expected in relation to autism (see here). Treating and/or managing symptoms of depression should then be indicated, accepting that talking- and the traditional pharmaco-therapies might not be the only tools in the intervention arsenal (see here). I might also advance the idea that a person's social environment can also influence risk of suicide; such that this should likewise be assessed and acted upon accordingly. Social attitudes and policy have to change.

Epilepsy has a long history of association with autism (see here). Again, it's all about appropriate (and perhaps preferential) screening and monitoring as and when autism is diagnosed to keep an eye on symptoms pertinent to the development of epilepsy or seizure disorder. Medication can be life-saving when it comes to epilepsy but this should perhaps also come with some good medicines management including screening other parameters (see here). That quite a few 'types' of autism might actually come with epilepsy as part of the diagnostic package (see here) is worth noting in terms of receipt of a diagnosis of autism being a springboard to further screening and assessment. The idea that some of the more complementary interventions indicated for autism might also have an important impact on comorbid seizure issues outside of the label (see here) should be pointed out (with no medical or clinical advice given or intended).

As uncomfortable as it might be, the idea that a diagnosis of autism elevates the risk of premature mortality provokes the questions: should science be doing more to help lessen the risk(s) of someone developing autism in the first place and/or should we be focusing greater attention on ways to 'alleviate' the more disabling - life-threatening - symptoms of the label? I've already aired some of my views on this in previous posts on the equally emotive topic of euthanasia / assisted suicide in respect to behavioural / psychiatric labels where autism has been mentioned (see here). Alongside various research suggesting that childhood behavioural issues elevate the risk of adult psychopathology and onwards poorer life outcomes (see here), childhood neurodevelopmental issues such as autism have similarly been tied to later outcomes adversely affecting quality of life (see here). In short, what happens in childhood affects what happens in adulthood. Armed with that knowledge, should we not be doing all we can in childhood as well as adulthood?

Moves to increase awareness of autism - including the idea of heterogeneity - and importantly, creating a more welcoming society for people on the autism spectrum should of course remain a priority. I dare say that if more meaningful and 'sustainable' opportunities were afforded to those with autism, the risk of suicide might, for example, be lessened for quite a few who consider turning to such an extreme option. But alongside all the talk about 'celebrating autism' (to coin a term - see here) the report from Autistica highlights some very real and very raw implications attached to the diagnosis. How potentially moving autism from the (generalised) description of a 'life-long condition' to that of a potentially 'life-limiting condition' should be a call to action to ensure that a reduction of between 16 and 30 YEARS of life is no longer tolerated as and when autism is diagnosed. I'd say that represents a crisis indeed.

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[1] Hirvikoski T. et al. Premature mortality in autism spectrum disorder. Br J Psychiatry. 2015 Nov 5.

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Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, & Bölte S (2016). Premature mortality in autism spectrum disorder. The British journal of psychiatry : the journal of mental science, 208 (3), 232-8 PMID: 26541693

Long-term outcome and autism continued

"The long-term outcome of almost half of all individuals with autistic disorders is poor."

I know that opening sentence doesn't make great reading, but when reported as part of the "systematic review and meta-analysis of studies reporting on the overall outcome in terms of a global measure of adjustment in children with autistic disorders followed up in adolescence and adulthood" by Steinhausen and colleagues [1], there are potential lessons to be learned. That some 20% of those participants included in the various studies by Steinhausen et al were said to have a "good outcome" offers a template for further investigation as to how science and practice might increase such an outcome status among the wider autism spectrum.

Outcome is a bit of a fuzzy term but is something that has been discussed before on this blog (see here). In that instance as in this, the idea that there is (a) "strong evidence for heterogeneity" when it comes to long-term outcome in autism and (b) "little is known about the pathways and predictors" of outcome, are important points. I might also add that overall outcome as gauged by factors such as living arrangements, degree of independence and/or education/employment status does not automatically mean that a person leads a 'happy' or 'unhappy' life. Even those who gain employment for example, might not necessarily have a great quality of life (see here). Likewise a dependency on others for day-to-day support is to expected for some people on the autism spectrum, particularly for those where routine tasks cannot be accomplished alone or where core and/or comorbid issues can be sometimes utterly disabling [2]. This does not mean a person is necessarily unhappy. I'm adverse to the idea that there is one-size-fits-all instruction manual for 'good' long-term outcome for everyone on the autism spectrum just as there isn't for those not on the autism spectrum.

With all that in mind, the area of outcome and autism and specifically the idea that we know little about the 'pathways and predictors' of it is perhaps a slight misnomer. If we happen to look at that group of people who have been headed under the label of 'optimal outcome' we can see important signals emerging (see here) including the idea that early communicative behaviours and general cognitive ability might be important behavioural variables for later outcome with autism in mind. I say this in the context of newer research also [3]. The suggestion that such cases of optimal outcome might have implications for psychiatric comorbidity outside of the presentation of core autism (see here) will no doubt also impact on perceptions/experiences of long-term outcome.

Although I don't want to get too bogged down in this area, I'd like to think that there are a few, quite simple, accommodations that could be made to improve overall long-term outcome for people on the autism spectrum. From a clinical perspective, some of the first things I'd like to see are moves to addressing the numerous health inequalities that seem to be popping up quite frequently with autism in mind and some rather distressing news on the extreme that is early mortality for example (see here and see here). Preferential screening for potentially 'over-represented' comorbidity might be a good start (see here and see here) and importantly, treating/managing what can be treated as and when it is identified (see here). The days of saying that every ailment experienced by a person on the autism spectrum is 'just down to their autism' are passing by very, very quickly.

Enabling individuals on the autism spectrum to further participate in society is perhaps another route towards better long-term outcome. I've talked before about research suggesting that greater societal inclusion is quite a big desire for quite a few people on the autism spectrum (see here) and what it might mean to them in terms of outcome. Of course this includes aspects such as getting a job (and not necessarily a job in the technology industry! [4]) and participating in activities such as sports or hobbies relevant to a person. More than that however are the opportunities to make and have friends and perhaps even meeting that special someone. If we've learned anything generally about favourable long-term outcome, it is that social and familial support are also paramount.

I'd finally like to add in the findings reported by Gotham and colleagues [5] and the notion that "understanding and acceptance of adults with ASD [autism spectrum disorder]" might also be something pretty important to outcome. As per the suggestion from Gotham on "calls for survey and qualitative research to ascertain what “understanding and acceptance” mean to individuals with ASD and their families" I do think more needs to be known about what expectations and requirements are included under such fuzzy terminology. In these days when autism awareness has its own day many people will know something about autism even if it is just sweeping generalisations (see here). Of course more needs to be done to inform the masses about how 'if you've met one person with autism, you've met one person with autism' and the like, but over and above that issue is a question to put out there: what more can be done to improve elements related to long-term outcome in autism?

And (once again) as if to prove a point...

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[1] Steinhausen HC. et al. A systematic review and meta-analysis of the long-term overall outcome of autism spectrum disorders in adolescence and adulthood. Acta Psychiatr Scand. 2016 Jan 13.

[2] Posserud M. et al. Autism traits: The importance of “co-morbid” problems for impairment and contact with services. Data from the Bergen Child Study. Research in Developmental Disabilities. 2016. Jan 27.

[3] Eigsti IM. et al. Language comprehension and brain function in individuals with an optimal outcome from autism. Neuroimage Clin. 2015 Dec 2;10:182-91.

[4] Lorenz T. & Heinitz K. Aspergers – Different, Not Less: Occupational Strengths and Job Interests of Individuals with Asperger’s Syndrome. Dichter GS, ed. PLoS ONE. 2014;9(6):e100358.

[5] Gotham K. et al. Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data. Autism. 2015 Oct;19(7):794-804.

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Steinhausen HC, Mohr Jensen C, & Lauritsen MB (2016). A systematic review and meta-analysis of the long-term overall outcome of autism spectrum disorders in adolescence and adulthood. Acta psychiatrica Scandinavica PMID: 26763353

Quality of life of parents of children with autism systematically reviewed

"This review verified previous reports on lower QoL [quality of life] among parents of children with ASD [autism spectrum disorder] and highlighted potential areas of support."

So said the findings reported by Eleni Vasilopoulou & Joy Nisbet [1] who surveyed the available peer-reviewed literature looking at "QoL among parents of children with ASD (<18 years)". They also reported on various factors potentially contributory to the reported lower QoL including "child behavioural difficulties, unemployment, being a mother and lack of social support."

Being careful not to generalise nor stigmatise, these are important results. On a previous blogging occasion I talked about the issue of parental stress in relation to raising a child with additional needs (see here) and how there may be evidence-based ways and means of reducing stress so helping allow parents to focus on being parents. Certainly the potentially contributory factors cited by Vasilopolou & Nisbet accord with some of tenets in that post (i.e. the positive impact of social support including respite and the need to tackle the more disruptive aspects of behaviour more likely to lead to greater stress for person and parent).

As per my recent ramblings on supporting other family members when a diagnosis of autism is received (see here), there are additional lessons to be learned. By all means focus attention and services on the person diagnosed in order to improve their quality of life (see here). Try and ensure that their personal, social and medical needs are met (see here) and that meaningful opportunities are offered, mindful that sweeping generalisations don't tend to work too good when it comes to the autism spectrum (see here). Snowflakes, people, snowflakes.

But also don't forget about families and other significant others. Don't forget about the mothers, fathers and other caregivers and their day-to-day and longer term needs and concerns (see here). Parents are the foundations of families. Those foundations need to be tended every once in a while in order to ensure the family home stays strong and upright.

Music: Red Hot Chili Peppers - Higher Ground.

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[1] Vasilopoulou E. & Nisbet J. The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders. 2016; 23: 36-49.

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Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review Research in Autism Spectrum Disorders, 23, 36-49 DOI: 10.1016/j.rasd.2015.11.008