Parent stress and autism: an issue that needs a lot more discussion

Two paper are brought to the (brief) blogging table today: the first from Nik Aida Nik Adib and colleagues [1] and the second from Elena Pattini and colleagues [2], both focused on the topic of stress and parenting in the context of autism.

Yes, I know to mention the words 'parenting stress' and 'autism' in the same sentence requires some caution. I know some people don't like to talk about this and related topics (see here). But obscuring such important research from view for fear of upsetting people or impacting on any 'positive PR' does little to approach an issue that is seemingly so widespread (see here).

So what are the key points to take away from both papers on this topic?

1. "Caregivers of an ASD [autism spectrum disorder] child perceived significant stress while taking care of their children." Not exactly a novel results I grant you, but important to reiterate.
2. Autism plus learning disability seems to increase the 'perceived' stress.
3. Parental stress may well present as physiological stress. This is particularly important in relation to the measurement of something called cortisol.

OK, there's nothing earth-shattering about such findings. They again imply that as and when a child receives a diagnosis of autism or ASD, parents or primary caregivers might also benefit from some information on what they might expect and what they can do when it comes to coping with stress. Caring for the carers (see here) and offering things like respite care to those who need it (see here) sound like good initiatives. Bear also in mind, that parenting a child with autism is often done alongside parenting other children too, and what effect that can sometimes have on them (see here)...

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[1] Nik Adib NA. et al. Perceived Stress among Caregivers of Children with Autism Spectrum Disorder: A State-Wide Study. Int J Environ Res Public Health. 2019 Apr 25;16(8). pii: E1468.

[2] Pattini E. et al. Psychological characteristics and physiological reactivity to acute stress in mothers of children with Autism Spectrum Disorder. Stress Health. 2019 Apr 26.

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"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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Early lead (Pb) exposure and risk of ADHD: yet more 'nothing good comes from exposure to lead'

Lead (Pb) is a metal that has cropped up more than once on this blog (see here and see here and see here) in relation to early exposure and it's *possible* links to various childhood behaviour(s). As per part of the title of this post - 'nothing good comes from exposure to lead' - there really does seem to be very little good to say about exposure to lead (see here) given an apparent lack of any (advantageous) biological role when it comes to the human body. In short, we should be doing everything we can to ensure that exposure levels for everyone, particularly the very youngest, are kept to an absolute minimum...

The study results published by Yuelong Ji and colleagues [1] add to a pretty large peer-reviewed research literature observing a possible connection between biological lead levels "in early childhood" and risk of childhood psychopathology. They concluded that: "Elevated early childhood blood lead levels increased the risk of ADHD [attention-deficit hyperactivity disorder]."

The source material for the Ji study was the Boston Birth Cohort (a research initiative that has cropped up before on this blog) and specifically the examination of blood lead levels in conjunction with "physician-diagnosed ADHD" in some 1500 infants: "299 ADHD, 1180 neurotypical." Various other co-variates were also included in the statistical mix and sex/gender was analysed as an independent variable. And before you mention it, yes, as per my other musings on the word 'neurotypical' in the context of autism (see here), I'd prefer another term to denote not-ADHD such as er, 'not-ADHD'.

Results: approaching 1 in 10 of the cohort had elevated blood lead levels defined as a value between 5-10 µg/dL. This is quite worrying, particularly as various agencies have started to reduce the cut-offs/definition of a 'safe' level of lead in recent years (see here). For the 8.9% of the cohort with such blood lead levels, authors noted that this was "associated with a 66% increased risk of ADHD." Boys also seemed to be particularly vulnerable to the effects of elevated blood lead levels in relation to ADHD: "Among boys, the association was significantly stronger."

What else?  Well, bearing in mind the observational methodology employed in the Ji study, authors noted that the relationship between blood lead levels and ADHD also seemed to be mediated by other factors. So, the "risk of ADHD in boys was reduced by one-half if the mother had adequate high-density lipoprotein levels or low stress" where high-density lipoprotein (HDL) typically refers to the 'good type of cholesterol' (bearing in mind that biology is rarely so black-and-white) and 'low stress' refers to stress during pregnancy. In effect, whilst early lead exposure (or blood lead levels) may be important when it comes to risk of ADHD, other factors also seem to play a role; some potentially protective, others not so much (see here for example). This is something that has been noted in other studies looking at other heavy metals and neurodevelopmental outcomes (see here).

In conclusion, still nothing good comes from (early) exposure to lead...

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[1] Ji Y. et al. A Prospective Birth Cohort Study on Early Childhood Lead Levels and Attention Deficit Hyperactivity Disorder: New Insight on Sex Differences. J Pediatr. 2018 May 8. pii: S0022-3476(18)30488-8.

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The ICF core sets for autism in action

The findings reported by Soheil Mahdi and colleagues [1] (open-access available here) reiterate that 2018 looks like being the year of the ICF core sets for autism.

Having covered this topic yet again only recently (see here), I'm back to talking about the core sets and, once again, get to use the beautiful word 'melange' with reference to the "complex melange of functioning experiences beyond the diagnosis" of autism.

This time around it was about trying to "capture aspects of functioning and contextual factors pertaining to individuals with ASD [autism spectrum disorder] as assessed by the ICF-CY [International Classification of Functioning, Disability and Health (ICF, and Children and Youth version, ICF-CY)] in a clinical practice setting." I must admit to making a cold shudder when seeing the words: "The ICF-CY is grounded on an interactive bio-psycho-social model of functioning" in light of what the biopsychosocial model has 'done' to other conditions (see here). But in this case, I'm willing to give it the benefit of the doubt... at least for now.

So, from a starting participant group of 126 children, adolescents and adults with ASD (even though researchers used the children and youth version of the ICF), this number was slightly whittled down to some 122 who completed the study. It was a worldwide effort, as participants were drawn from 10 countries and, perhaps notably, the United States and United Kingdom were not among the countries taking part on this occasion. I was pleased to read that inclusion criteria for the study was a diagnosis of autism of course, but also did not exclude participants who also presented with "any given common co-morbidity." This, in light of 'autism plus' perhaps being more 'realistic' than autism appearing in some sort of diagnostic vacuum (see here).

Results: "In total, 139 of 161 ICF-CY categories assessed met the cut-off in at least 10% of the participants." The authors observed that this included "64 categories in the activities and participation component, 40 body functions and 35 environmental factors." Although you can look for yourself what issues/factors are included under those headings, I might point out a few of interest including the handling stress and other psychological demands, sensory functions and pain, functions of the digestive, metabolic and endocrine systems and the role of immediate family.

Continuing: "Examples of supportive personal factors included high IQ, acceptance towards own diagnosis and specific interests (e.g., art, sports)." These are also interesting. The role of 'acceptance towards own diagnosis' is something that has cropped up before in the peer-reviewed literature (see here). On that research occasion, the authors leaned towards a role for 'others' (external sources) accepting a person with a diagnosis of autism as being potentially 'positive' when it came to good mental health in the context of autism. I was perhaps more sceptical of the primacy of this 'other' influence - based as it was on rating statements such as "over the past week, I have felt accepted by society as an autistic person/person with autism" on a 5-point scale - insofar as 'personal acceptance' potentially being the more important variable. The Mahdi data seems to agree. The other 'supportive' variable, talking about having specific interests such as art or a sport, also tallies with a lot of other independent research findings (see here for an example, also using a certain WHO tool relevant to the ICF core sets for autism).

Onwards: "Past traumatic life events (e.g., getting bullied at school) were mentioned as a hampering personal factor, as it affected the individual’s self-esteem and self-worth." This, alongside various other routes to stress that "exacerbate ASD symptoms", provides some useful information about what could be done to mitigate such negative influences. I'm not sure that it is possible to completely eradicate issues such as perfectionism, but I daresay that it could be minimised through certain talking interventions for example, thus potentially improving quality of life. Insofar as the role bullying might play, well, probably quite a bit (see here) and any efforts to reduce things like bullying at school should be welcomed.

I do want to pass one final comment on the Mahdi data going back to the issue of comorbidity appearing alongside autism. As I've mentioned, this was a study that did not shy away from comorbidity being central to quite a few people diagnosed on the autism spectrum. The types of comorbidity reported included old friends such as attention-deficit hyperactivity disorder (ADHD), present in about a quarter of participants, and intellectual (learning) disability, present in about 15%. Whilst part of the clinical picture for quite a few, there is always the possibility that some of factors discussed in relation to the ICF core sets for autism *may* be more directly influenced by such comorbidity than by the 'core features' of autism themselves. I guess it doesn't matter if said comorbidity is part of the clinical picture, but if it's not, there may be some assumptions being incorrectly generalised...

And it appears that autism is not alone in its receipt of the ICF core sets treatment [2]...

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[1] Mahdi S. et al. An International Clinical Study of Ability and Disability in Autism Spectrum Disorder Using the WHO-ICF Framework. J Autism Dev Disord. 2018 Feb 8.

[2] Mahdi S. et al. An international clinical study of ability and disability in ADHD using the WHO-ICF framework. Eur Child Adolesc Psychiatry. 2018 Feb 17.

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Autism, mental health and 'sexual and gender minority' status

The findings reported by Rita George & Mark Stokes [1] piqued my interest recently, and their conclusion that various mental health issues over-represented in autism (see here and see here for examples) might not be just solely connected to the presence of a diagnosis of autism.

Yes, I know this sounds like common sense (see here), but as I've come to realise in relation to lots of diagnostic labels, assumptions very often precede actual (peer-reviewed) evidence.

Based on responses on the DASS-21 (which is fast becoming the go-to measure for the self-report of things like stress, depression and anxiety-like behaviours with autism in mind [2]), researchers compared depression, anxiety and stress scores for over 300 people with autism compared with over 250 "typically-developing individuals." Alongside, membership of a minority grouping in terms of sex and gender, e.g. non-heterosexual, was also thrown into the statistical mix. Results suggested that along with differences in DASS scores being more generally observed between the groups: "As membership to a minority group became more restrictive, mental health symptoms worsened... suggesting stressors added."

Such an investigation follows a scheme of work by this authorship group who, quite recently, also reported that within the same participant group(?), some 70% of those with autism "reported being non-heterosexual" [3]. I was quite taken aback by the high rate of non-heterosexuality reported in this study, bearing in mind that this data was derived from an on-line sample and may not be entirely representative of the full autism spectrum as a function of the use of self-report for example (see here). I might also add that focusing just on autism to the exclusion of some other potentially important comorbid labels [4] could be something that needs to be looked at in future investigations in light of other results on gender variance for example [5].

Minus however, any 'I told you so' sentiments, I have previously mentioned about how gender and sexual identity in relation to autism is both a research-rising area and can often have some quite profound implications for the person concerned (see here). We can um-and-ah about whether there is a 'connection' between autistic traits and sexual orientation (see here) or whether something like gender dysphoria is more or less likely in the context of autism (see here), but there is no denying that gender and sexual identity are variables that can and do potentially impact on mental health. In support of the George/Stokes findings, one need only look to the non-autistic focused research literature to see how various aspects of health-related quality of life for example, are seemingly influenced by variables such as sexual orientation [6] and how this potentially plays out over both childhood and into adulthood [7].

So when George & Stokes talk about: "Specialized care is recommended for this vulnerable cohort" there could be some pretty profound implications associated with timely and appropriate education and support taking into account sexual and gender identity in the context of autism...

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[1] George R. & Stokes MA. A Quantitative Analysis of Mental Health Among Sexual and Gender Minority Groups in ASD. J Autism Dev Disord. 2018 Jan 23.

[2] Nah YH. et al. Brief Report: Screening Adults with Autism Spectrum Disorder for Anxiety and Depression. J Autism Dev Disord. 2017 Dec 2.

[3] George R. & Stokes MA. Sexual Orientation in Autism Spectrum Disorder. Autism Res. 2018 Jan;11(1):133-141.

[4] May T. et al. Trends in the Overlap of Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder: Prevalence, Clinical Management, Language and Genetics. Current Developmental Disorders Reports. 2018. Jan 17.

[5] Strang JF. et al. Increased gender variance in autism spectrum disorders and attention deficit hyperactivity disorder. Arch Sex Behav. 2014 Nov;43(8):1525-33.

[6] Marti-Pastor M. et al. Health-related quality of life inequalities by sexual orientation: Results from the Barcelona Health Interview Survey. PLoS One. 2018 Jan 24;13(1):e0191334.

[7] Petterson LJ. et al. Sex, Sexual Orientation, Gender Atypicality, and Indicators of Depression and Anxiety in Childhood and Adulthood. Arch Sex Behav. 2017 Jul;46(5):1383-1392.

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Walking as an intervention for good psychological health: number of steps or just enjoyment?

I'm once again returning to the topic of walking for health on this blog (see here) and some rather intriguing findings reported by Karen Hallam and colleagues [1] suggesting that adoption of a 100-day 10,000 steps a day program might have some bearing on aspects of mental and psychological health and wellbeing. But there's a bit of a twist...

The activity program in question was something called Stepathlon which, from what I gather, is a corporate initiative to promote health and fitness among employees. I might add that some employees in some occupations probably don't need such initiatives (see here). Various steps (pardon the pun!) are listed on the Stepathlon website including 'forming a team of 5 with your colleagues', getting yourself a pedometer or other fitness tracker that measures steps and then uploading your daily data on to their platform where it is compared with other groups across the world.

Hallam et al report results for nearly 2000 participants based on 'de-identified' data; also including participant reports based on the completion of the "short form of the Depression, Anxiety Stress Scales (DASS)" and the "Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS)." The various strands of data were analysed, correlated and the like.

Results: "The results of this study highlight some psychological and wellbeing benefits of being engaged in work based 10,000 step programs." The authors talk about observing a nearly 9% reduction in stress levels, 8% reduction in 'signs of depression' and a 5% reduction in anxiety when comparing pre-program with post-program data. They add: "This reinforces the benefits of this type of exercise regimen as playing a small yet significant role in improving mental as well as physical health."

But...

Things were not however completely straight-forward as the authors also talk about a "lack of a dose response" in terms of the number of steps completed and those psychological health and well being parameters being assessed. This could denote a few things: (a) participation in a program that encourages walking - walking in a group setting - may be beneficial irrespective of the number of steps that are actually taken, and/or (b) the wide variability in the number of daily steps taken over the course of the program - remember it lasted 100 days - scuppers any chance of getting meaningful correlation data between walking and psychological health. Indeed on that last point, authors mention that future work should really take into account things like the self-report nature of uploading daily activity levels and also the fact that within the sample there were "clearly individuals who were more active before commencing the program" and for whom such an intervention might not be all that effective given their already raised starting activity levels.

Still, I do think that this is a good piece of research that should encourage further investigation. Aside from the significant physical health benefits associated with getting more active, I'd also like to think that such a program could be further adapted for various groups, particularly when things like stress, depression and anxiety are considered a part of the clinical picture. Autism springs to mind as one such avenue for further study, based on various evidence [2] including result similarly using the DASS-21 tool. Indeed, on another blogging occasion where I critically discussed the suggestion that "
autism acceptance could contribute to mental health in autism" (see here) again based on DASS scores, I wonder if a group walking 'intervention' (although I'm not so sure about medicalising such an activity) could also be the topic of more study too, added to other research?

And finally... bearing in mind that exercise might have some nootropic value for some (see here and see this recent study [3]), it seems that much of the chatter about sitting around video game playing fostering "a broad range of cognitive abilities such as visual processing, attention, spatial ability, and cognitive control" is not readily supported by the current peer-reviewed evidence...

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[1] Hallam K. et al. “Happy feet”: evaluating the benefits of a 100-day 10,000 step challenge on mental health and wellbeing. BMC Psychiatry. 2018; 18: 19.

[2] Nah YH. et al. Brief Report: Screening Adults with Autism Spectrum Disorder for Anxiety and Depression. J Autism Dev Disord. 2017 Dec 2.

[3] Gmiąt A. et al. Improvement of cognitive functions in response to a regular Nordic walking training in elderly women - A change dependent on the training experience. Exp Gerontol. 2018 Feb 9. pii: S0531-5565(17)30663-0.

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"the importance of considering how autism acceptance could contribute to mental health in autism"

The quote heading this post comes from the findings reported by Eilidh Cage and colleagues [1] (open-access) who sought to examine how "experiences and perceptions of autism acceptance could impact on the mental health of autistic adults."

Using an on-line survey "to test the relationship between perceived autism acceptance and mental health (specifically, depression, anxiety and stress)" findings are reported based on responses from over 110 people diagnosed as on the autism spectrum. I say 'diagnosed as on the autism spectrum' but as with any internet survey, there is always a degree of 'trust' that autism diagnoses are being reported faithfully just as it is with other labels that were under study: "a high proportion of participants reported additional diagnoses." Indeed, I also note that "11 participants reported that they did not currently have a formal diagnosis of autism" and were still included in some of the analyses...

No mind, the authors sought to 'quantify' autism acceptance given no measure currently exists by asking various questions including "whether they felt that society (specified as the general public, made up of people who did not personally know them) generally accepted them, with “yes”, “no”, “sometimes” and “prefer not to say” as response options." Responses were also sought to statements such as "over the past week, I have felt accepted by society as an autistic person/person with autism" and onward "perceptions of autism acceptance from different sources." This was complemented by responses to the Depression, Anxiety and Stress Scale (DASS-21).

Results: "depression was predicted by autism acceptance from external sources (society, family and friends) and personal acceptance" but anxiety was not seemingly *linked* to autism acceptance. Drilling down further into their results, researchers observed that "greater personal autism acceptance predicted lower depressive symptoms" indicating that variables such as self-esteem might mediate any risk of presenting with depressive signs and symptoms [2] (see here for my take). This is something that perhaps tallies with other research talking about autistic traits and wellbeing [3].

The author has also written a piece for The Conversation on her research study (see here).

I'm not quite sure why the ever-fluffy psychological concept of 'Theory of Mind' (ToM) needed to be introduced into the Cage paper given that no measure of ToM was actually included in the study. A quick search of other published research from these authors reveals that ToM is a feature there too [4]. The authors talk about how "Theory of Mind ability may impact on perceptions of autism acceptance" but I'm not so sure that this is particularly important. It's kinda like suggesting that society is completely autism aware and accepting/accommodating but those on the spectrum 'don't seem to understand it' as a result of any ToM issues, which is of course, a nonsense. ToM also still requires a bit more investigation into what it actually means and covers (see here) including the idea that issues with ToM might themselves be 'impaired' as a result of something like depression (see here). I'd also point out that quite a few other over-represented diagnoses potentially appearing alongside autism also seem to present with ToM issues [5] too...

"There is still a long way to go in understanding and tackling the high prevalence of mental health difficulties in autism, but we believe that the social model approach is a useful and positive lens through which mental health outcomes could be improved." That was the conclusion reached by authors on the basis of their findings. I would agree that there is still a long way to go on the topic of mental health and autism and the social model approach - "disability is caused by the way society is organised, rather than by a person’s impairment or difference" - is an option for further research of this kind. But I would also caution that one needs to balance such a perspective with others too (see here), and accept that the organisation of society is not always the most disabling aspect of a person's disability, particularly when it comes to something like depressive symptoms. Indeed, to say that depressive symptoms accompanying autism might merely be a facet of a 'lack of acceptance' or a lack of understanding from society or the individual themselves, risks plunging autism back into some pretty dark times (see here) and is likely to conflict with various other views. From a clinical point of view, it ignores some very serious research on the wide spectrum that is depression potentially present for all-manner of different reasons, being relevant to the equally wide spectrum that is autism (see here for a discussion on how depression might actually be something rather more fundamental to some autism over just being 'comorbidity'). At worst, it may even delay or put people off from seeking timely recognised treatments when depression becomes 'clinical', which could be a rather dangerous path to start down (see here).

Having said all that, I don't however think too many people would argue with the idea that personal perception(s) whether positive or negative are likely to impact on a person's mental (and physical?) health and wellbeing. If one is constantly feeling like an 'outsider' or excluded or feels that ones needs are not being met, added to a possible history of being bullied or loneliness or indeed, with other clinical labels also potentially being present for example, one is likely to build up a mindset appropriate to such a situation which probably includes some advanced risk for depressive signs and symptoms. From that point of view, much more needs to be done to look at the ways and means of impacting those personal perceptions; possibly taking into account other relevant research which has some [evidence-based] suggestions on things like societal inclusion and increasing access to it (see here) for those who want this option, alongside other complementary strategies where some [peer-reviewed] evidence is present (see here) and continues to be produced (Google the 'HUNT Cohort Study' to see what I mean). I say all this reiterating that something like chronic loneliness can very much be a major contributor to issues like depression.

I also understand the calls to make society more autism-accepting which I think most people would support as being pertinent across the ENTIRE autism spectrum (see here). I'm however, a little unsure of the real-life plan and details of the plan attempting to achieve this goal; particularly in the current climate when even getting a timely diagnosis seems to be an uphill struggle and when also many on the autism spectrum are seemingly left to fend for themselves post-diagnosis. Society it seems, is getting much more autism aware (for good or bad based on current media portrayals for example) but not necessarily getting more autism accommodating nor necessarily putting important words into actions. Indeed, one could argue that other societal factors like unemployment and financial hardship readily experience by those with autism are probably as, if not more, important to their experiences of something like depression yet little appears to be done to improve such issues for the vast majority...

As for the "experiences of “camouflaging” [that] could relate to higher rates of depression" also mentioned in the Cage article, I have quite a lot of time for this area of autism research (see here). Particularly the idea that camouflaging is not necessarily an all-female pursuit in the context of autism (see here) and how truly energy-sapping it can be for many, many people on the spectrum...

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[1] Cage E. et al. Experiences of Autism Acceptance and Mental Health in Autistic Adults. J Autism Dev Disord. 2017. Oct 25.

[2] McCauley JB. et al. Self-Esteem, Internalizing Symptoms, and Theory of Mind in Youth With Autism Spectrum Disorder. J Clin Child Adolesc Psychol. 2017 Oct 19:1-12.

[3] Rodgers JD. et al. Brief Report: Personality Mediates the Relationship between Autism Quotient and Well-Being: A Conceptual Replication using Self-Report. J Autism Dev Disord. 2017 Sep 16.

[4] Cage E. et al. Reputation management: evidence for ability but reduced propensity in autism. Autism Res. 2013 Oct;6(5):433-42.

[5] Wang Y-Y. et al. Theory of mind impairment and its clinical correlates in patients with schizophrenia, major depressive disorder and bipolar disorder. Schizophrenia Res. 2017. Nov 7.

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School refusal is 'pervasive' in students with autism

The findings reported by Ellen Kathrine Munkhaugen and colleagues [1] make for worrying reading when it comes to the concept of school refusal in the context of autism spectrum disorders (ASD). Detailing how school refusal - where a child/young adult refuse to attend school because of the anxiety or distress it causes - was quite a bit more common among students with ASD compared with non-ASD students over a 20-day inspection period, the authors highlight an important issue. Indeed, an issue that has already been noted in the peer-reviewed literature [2] and has accompanying advice from the one of the larger autism organisations here in Blighty (see here).

As I've mentioned a few times on this blog, school can be a significant source of stress for many children on the autism spectrum (see here). We can for example, um-and-ah about the merits of inclusive vs. specialised education settings in the context of autism or how bullying seems to be something that quite a few children unfortunately, have to contend with (see here), but the bottom line is that stress is a likely passenger for many children with autism as they navigate the complicated world that is the childhood education system. And it is therefore perhaps unsurprising that for some children/young adults with autism, school might not be a place they necessarily want to spend a lot of time in.

One of the worries (among the many) that I have about results such as the ones from Munkhaugen et al is how, in these days of real focus on 'bottoms on seats' in school at least here in Blighty, such findings have the potential to single out families. If one reads the guidance from the UK Department of Education on the topic of school attendance (see here) for example, it's not difficult to see how tools like 'parenting contracts' and even 'parenting orders' might be something not unfamiliar in the context of school refusal. I say this bearing in mind that quite a few parents are already having to fight their child's corner when it comes to schools and local authorities providing appropriate school resources and allowances (see here) also potentially impacting on school refusal.

There are no easy or universal solutions to the issue of school refusal in the context of autism. Yes, schools can perhaps make provisions to help a child, but this needs to be set in the context that they have a school full of children who are similarly relying on them to provide the best educational experience that they can. The current cash-flow situation that many schools are faced with is also pertinent (see here). The other option is to try to manage school refusal behaviours particularly when chronic. This might first include investigations relevant to comorbid conditions that might also impact on school refusal [3] and then looking to strategies to help minimise the possible causes of school refusal [4] (tailoring them to the individual of course). Anxiety seems to be a key feature of school refusal (see here) and hence, moves to address this issue - and the core symptoms that seemed to be linked to it - should probably be part of any intervention strategy (see here). I hold back from making a big case for moving a child to a new school or into home education because this should really be a very last resort and come with their own potential issues.

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[1] Munkhaugen. EK. et al. School refusal behaviour: Are children and adolescents with autism spectrum disorder at a higher risk? Research in Autism Spectrum Disorders. 2017; 41-42: 31-38.

[2] Kurita H. School refusal in pervasive developmental disorders. J Autism Dev Disord. 1991 Mar;21(1):1-15.

[3] Egger HL. et al. School Refusal and Psychiatric Disorders: A Community Study. Journal of the American Academy of Child & Adolescent Psychiatry. 2003; 42: 797-807.

[4] Kearney CA. & Silverman WK. A Preliminary Analysis of a Functional Model of Assessment and Treatment for School Refusal Behavior. Behavior Modification. 1990; 14: 340-366.

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"What Happens When I Can No Longer Support My Autistic Relative?"

I've kinda touched upon the subject matter examined in the paper by Renske Herrema and colleagues [1] before on this blog (see here). Detailing important results on views and concerns about the future and specifically what will happen to loved ones with autism when families are no longer able to care for or support them, the findings approach a difficult but important question. Part of that questioning surrounds the perception that social and other supports for example, are pertinent and in place to keep loved ones safe, cared for and able to deliver suitable services onward to ensuring a nurturing environment that caters to the individual's needs, wants and wishes.

Drawing on data from "120 family members of autistic adults" (or adults with autism if you prefer), authors asked about "concerns about the future for their relative" via an online survey. Several key themes emerged from their inquiry on things like concerns for individual needs not being met, the happiness of their loved one and the question of who will care for them as and when primary caregivers are not able to or are not around to care for them. These concerns were things that quite regularly featured in the minds of family members according to their online reporting.

The authors talk about the need for planning to start early - 'timely' - when it comes to ensuring that support is both available now and in the future for family members with autism. I would definitely agree with such early planning given the history of almost Herculean efforts that parents/caregivers have had to go through to ensure that their loved ones are provided the same rights as anyone else. Indeed, legacies have already evolved from such planning (see here). I do worry however that there are factors that parents and other family members seem to have to overcome in modern times; where austerity is pushing social care to breaking point (at least here in Blighty) and the availability of social support being more and more reserved for those who cannot live independently potentially at the expense of the 'look like they're managing' masses...

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[1] Herrema R. et al. Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults. J Autism Dev Disord. 2017 Jul 28.

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Fidget spinners: "their alleged benefits remain scientifically unfounded"

Fidget spinners, those spinning toys that have taken the world by storm in recent months, are great little things. My brood have several and, at least for the first few days of getting them, were constantly spinning them on their fingers or any other suitable surface. A welcome - if temporary - distraction from the tablets, phones, games consoles et al that pervade their lives.

Some of the claims however, that have been made about fidget spinners are not so great. Namely that these toys might have some almost magical qualities in 'eliminating anxiety' in relation to various diagnostic labels such as attention-deficit hyperactivity disorder (ADHD) or autism. The paper by Rachel Schecter and colleagues [1] confirms however that as things currently stand: "their alleged benefits remain scientifically unfounded."

Accepting that the research literature on the use of fidget spinners is, at the moment, pretty much nil, Schecter et al provide a little peer-reviewed clarity on the various claims being made around fidget spinners and conditions like ADHD and autism. They suggest that because  "fidget spinners and other self-regulatory occupational therapy toys have yet to be subjected to rigorous scientific research" any medicinal claims around them should really be reserved until appropriate scientific evidence emerges. Further that such toys may represent "potential choking hazards" so medical professionals (and I assume parents and caregivers also) need to be mindful. Such findings follow other opinions from members of this authorship group on other modern day trends and fads [2].

I don't want to undermine the popularity and usefulness of something like fidget spinners as a toy. I can remember the hacky sack sharing a similarly popular position when I was a kid; albeit not accompanied by any psychobabble explanations of improved this-or-that accompanying such use. I neither want to totally poo-poo the idea that for some at least, fidget spinners *might* offer some relief for something like stress under certain circumstances. But what I will continue to take exception to is the way that loose words about a toy having some medicinal qualities for one or more groups can seemingly fill the marketing airways without rigorous scientific evidence to back them up...

To close, vicars... careful when you go to the pub.

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[1] Schecter RA. et al. Fidget spinners: Purported benefits, adverse effects and accepted alternatives. Curr Opin Pediatr. 2017 Jul 7.

[2] Serino M. et al. Pokémon Go and augmented virtual reality games: a cautionary commentary for parents and pediatricians. Curr Opin Pediatr. 2016 Oct;28(5):673-7.

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Depression in parents of children with autism

"Mothers (OR 2.95, 95% CI 2.81-3.09) and fathers (OR 2.41, 95% CI 2.25-2.58) of children with ASD [autism spectrum disorder] were more likely to have a diagnosis of depression than parents of children without ASD."

The paper by Cohrs and Leslie [1] is probably not going to win any awards for novelty when it comes to their findings that: "Autism Spectrum Disorder (ASD) in children can have secondary effects on the child's parents." It does however represent another important piece of evidence pertinent to the idea that 'caring for the carers' should be a mainstay of the support and services offered when a diagnosis of autism is received in the family.

I did say in a post not so long ago that I would talk about the Cohrs/Leslie paper and there, I [briefly] have. Added to the body of literature talking about parental stress (and what we can do about it) in the context of autism, resources aplenty should be poured into this area. That and the fact that we already have some clues as to what areas of child rearing might be primary targets for intervention and support....

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[1] Cohrs AC. & Leslie DL. Depression in Parents of Children Diagnosed with Autism Spectrum Disorder: A Claims-Based Analysis. J Autism Dev Disord. 2017 Feb 18.

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Cohrs AC, & Leslie DL (2017). Depression in Parents of Children Diagnosed with Autism Spectrum Disorder: A Claims-Based Analysis. Journal of autism and developmental disorders PMID: 28214978

Probiotics and 'subclincial' psychological symptoms: meta-analysed

I'm gonna be fairly brief today and draw your attention to yet another systematic review and meta-analysis this time looking at how "probiotic supplementation can have a positive effect on mood and psychological symptoms such as depression and anxiety." [1] Probiotics by the way, include a variety of bacteria and related lifeforms that are thought to confer some health advantage.

The review/re-analysis by Jennifer McKean and colleagues found 7 studies on this topic in the peer-reviewed research literature, that overall "showed that supplementation with probiotics resulted in a statistically significant improvement in psychological symptoms... compared with placebo." Personally, I wasn't surprised at these findings having covered a few bits of science on probiotics and psychology before on this blog (see here for example). Some recent discussions on how probiotics might be a possible 'stress-reliever' (see here) also add to this area.

I know some people are still a little sceptical of the whole 'gut-brain' thing (i.e. what goes on in the gut might have the ability to influence what goes on the grey/pink matter floating in the skull) and all the associated 'hype' that has accompanied the new science around the gut microbiota including the use of probiotics. There is lots more to do in this area; also overlapping with how other interventions may more detrimentally affect the trillions of bacteria that call us home and onwards may have 'psychological consequences' too (see here).

But it is getting rather more difficult not to think that there may be some important processes at work in these times of psychobiotics [2]...

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[1] McKean J. et al. Probiotics and Subclinical Psychological Symptoms in Healthy Participants: A Systematic Review and Meta-Analysis. J Altern Complement Med. 2016 Nov 14.

[2] Dinan TG. et al. Psychobiotics: a novel class of psychotropic. Biol Psychiatry. 2013 Nov 15;74(10):720-6.

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McKean J, Naug H, Nikbakht E, Amiet B, & Colson N (2016). Probiotics and Subclinical Psychological Symptoms in Healthy Participants: A Systematic Review and Meta-Analysis. Journal of alternative and complementary medicine (New York, N.Y.) PMID: 27841940

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

Bifidobacterium longum 1714 attenuates stress?

It's been quite a week hasn't it? Indeed for quite a few people it's been a stressful few days so perhaps timely that I'm talking about the 'attenuation of stress' in today's post.

Despite the relatively small sample size included in the paper by by AP Allen and colleagues [1] there is something rather tantalising about their results suggesting that in healthy volunteers "consumption of B. longum [Bifidobacterium longum 1714] 1714 is associated with reduced stress and improved memory."

Tantalising because as well as further directing research attention towards the important relationship that is the gut-brain axis (see here for another example) the findings provide initial support for the concept of "psychobiotics—live microorganisms with a potential mental health benefit" set within a human (not mouse) context.

The Allen paper (who incidentally is on Twitter) is open-access and has previously provided signs that it was to be published (see here). Here are a few choice details:

Take 22 (male) volunteers aged between 18 and 40 years of age who fitted various inclusion/exclusion criteria including no "self-report habitually taking any probiotic products" and ask them to take B. longum 1714 for 4 weeks after giving them a placebo preparation containing just maltodextrin and magnesium stearate and no probiotic for 4 weeks. Deliver various physical, psychometric and self-report questionnaires/tests at various intervals covering things like the "Socially evaluated cold pressor procedure" (SECPT) and other measures and see how things pan out according to placebo/psychobiotic use and after "a 2-week post-probiotic follow-up."

Results: well, as per the opening paragraph of this post, there did seem to be some effects to be had potentially associated with B. longum administration. So, when it came to that 'put your hand in cold water' test (SECPT), participants as a group lasted slightly longer in the cold water than on previous testing occasions. When researchers looked at salivary cortisol levels (a measure of psychological stress) following this acute stress test, they observed some potentially important differences between the initial (baseline) test, the period covering placebo use and the period covering the psychobiotic use. This accompanied some differences in reported state anxiety. Such acute stress findings were also complemented by some subtle but potentially important differences in self-reported daily stress levels (lower) following the period of psychobiotic use (something that "returned to a higher level during the 2-week follow-up period"). The authors also report on some findings associated with testing cognition across the various phases of the study but I'm gonna stay focused on the stress part of things for now before anyone moves towards describing B. longum 1714 as some sort of nootropic of choice just yet.

Of course there is still much to do in this area before anyone gets too carried away with things (how about a few more blinded RCTs pitting placebo against psychobiotic?) but the results are interesting. You could argue that there may have been some influence of practice effects associated with some of the results given the short timescales but I'm gonna take the findings at face-value. More so when when set in the context of other microbial preparations also potentially dealing with certain types of stress under experimental conditions (see here for example).

Mode of action? Well, the authors mention the 'vagus nerve' as potentially being important given the suggestion of a connection between the trillions of wee beasties that populate our gut (the gut microbiota) and brain function(s). The specifics however are yet to be decided upon; and it is also worth noting that as part of the probiotic formulation called VSL#3, B. longum 1714 might have some important 'bowel' effects as per other findings (see here) onwards to behaviour(s) and labels (see here). I'm also intrigued by the finding that post-probiotic there was a suggestion of a waning of some of the previously reported effects implying that far from probiotics being accepted and 'assimilated' into our collected gut microbiota, there may be mechanisms at work tied to going back to the status quo.

"Further studies are warranted to evaluate the benefits of this putative psychobiotic in relevant stress-related conditions and to unravel the mechanisms underlying such effects." Wise words before anyone makes a run on B. longum 1714 or any related preparations but this is an interesting piece of research. Given also the so-far relatively good safety profile of various probiotics, there is an important argument for experimentally testing such stress relief and/or cognition-aiding properties under a wide range of contexts.

To close, we lost another one in 2016. There must be a helluva party going on upstairs...

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[1] Allen AP. et al. Bifidobacterium longum 1714 as a translational psychobiotic: modulation of stress, electrophysiology and neurocognition in healthy volunteers. Translational Psychiatry. 2016; 6: e939.

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Allen AP, Hutch W, Borre YE, Kennedy PJ, Temko A, Boylan G, Murphy E, Cryan JF, Dinan TG, & Clarke G (2016). Bifidobacterium longum 1714 as a translational psychobiotic: modulation of stress, electrophysiology and neurocognition in healthy volunteers. Translational psychiatry, 6 (11) PMID: 27801892

Living with severe autism: families share their experiences

Appreciating that the autism spectrum is truly a wide and heterogeneous one (or even several?), I'd like to direct your attention today to the findings reported by Jocelyn Bessette Gorlin and colleagues [1] on the topic of "the experiences of families living with a child with severe autism."

In particular, I'd like to highlight the six areas that emerged from the "29 interviews with 22 participants from 11 families" related to family experiences and how, minus any sweeping generalisations, moves to tackle some of the issues raised in these areas might do quite a bit for the quality of life of everyone concerned.

So, the six areas:

(1) "families experienced autism as mysterious and complex because it is an invisible and unpredictable condition with diagnostic challenges." 'Mysterious' and 'complex' are words that have always followed the label of autism and as things stand at the moment, are unlikely to change in the coming years. Sure we know a little more about autism than we did a few years ago (i.e. the 'autisms', lots of comorbidity is potentially over-represented, etc) but in terms of longitudinal course and those important discussions (and actions!) about how to maximise quality of life 'for individuals' (the stress being on 'individuals'), concrete strategies are still few and far between. Diagnostic challenges? Well, certainly there are challenges to 'getting a diagnosis' in quite a few quarters still (see here for example) which is probably just as much down to money and resources as anything else. And just before you suggest that parents might not be sensitive to early issues potentially linked to autism, you're probably wrong (see here).

(2) "families described severe autism behaviors that often caused self-injury, harm to others and damaged homes." This is the side of autism that people generally don't talk about as much as they should. Acknowledging that extremes like self-injurious behaviour (SIB) aren't exactly great dinner table conversation, such patterns of behaviour are often the ones that cause the most distress both to the person themselves and their family/loved ones around them. I don't think I can stress enough how vital it is that SIB is further (a) understood (in terms of potential meaning) and (b) acted upon, particularly where a person is at high risk of hurting themselves or others (see here for example). I might also add that important issues such as wandering (elopement) in relation to autism should also be given due consideration given its potential inclusion under the category of 'challenging behaviour'.

(3) "profound communication deficits resulted in isolation between the family and child." I think this area is pretty self-explanatory. We can talk about the emerging role for assistive technologies as part of a package of interventions to aid this issue, but a lot more needs to be done in this area and indeed, is being done. And yes, this probably includes discussions around a re-framing of the communicative relationship between child/adult and family.

(4) "families discussed the unrelenting stress from lack of sleep, managing the child's developmental delays, coordinating and financing services, and concern for the child's future." I'm a big fan of caring for the carer(s) when it comes to the quality of life for families touched by autism (see here for example). To mention words like 'parenting stress' when it comes to autism shouldn't be a taboo subject (see here) the same as it shouldn't be when talking about parenting in general. There may be many ways that professionals can intervene in this respect (see here). Insofar as parents/families looking to the future of their children/loved one and tackling the sentiments of 'why I can never die' (see here), well, this is where society also needs to step up both in terms of future planning and delivery of services appropriate, welcoming and responsive to the needs of individuals. And some parents do have to do it all themselves...

(5) "families described consequences of isolation from friends, school, the public, and health providers." Although not everyone's experience, another uncomfortable issue associated with parenting a child with severe autism can be how isolating it is. It's little surprise that in the age of social media, this medium is being used to enable families to be/feel that little less isolated from the outside world. Aside from making more support agencies 'available' to families, there are a few other suggestions that might make things a little less isolating (see here).

(6) "families portrayed their need for compassionate support and formed 'hybrid families' (nuclear, extended families and friends) to gain support." See point 5. I'd also argue that the formation of those 'hybrid families' perhaps overlap with those 'kingdoms of autism' talked about a few years back. Indeed, I get the impression that talk about families and kingdoms intersecting with how wide and heterogeneous the autism spectrum is, might be one reason why there are so many varied opinions about autism from all sorts of angles...

These are all important points. Yes, I know that their relevance is going to be variably applicable to those (a) on the autism spectrum or (b) falling into that 'severe autism' bracket, but I don't doubt the lessons that could be learned would benefit quite a few people beyond the intended audience. As the authors note, their study results "could influence health care policies to improve the care for families caring for children with severe autism."

Great words indeed, but how to put words into 'life-changing' practice? Well, for a start understand that the autism spectrum is indeed a wide and heterogeneous one...

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[1] Bessette Gorlin J. et al. Severe Childhood Autism: The Family Lived Experience. J Pediatr Nurs. 2016 Oct 6. pii: S0882-5963(16)30279-2.

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Bessette Gorlin J, McAlpine CP, Garwick A, & Wieling E (2016). Severe Childhood Autism: The Family Lived Experience. Journal of pediatric nursing PMID: 27720503