Preventing, yes preventing, elopement in kids with autism

I know the word 'prevention' is a dirty word for some in relation to some aspects of autism. When however 'prevention' is used in the context of elopement or wandering and autism, the word(s) take on an altogether different meaning...

The word prevention is used in the study findings reported by Silvia Pereira‐Smith and colleagues [1] and their focus on "the use of preventive measures that target elopement" in relation to autism. They add that "elopement can lead to dire consequences." Seldom have truer words been spoken in relation to this issue with autism in mind (see here).

For those of you who might know too much about this topic, wandering is an important issue in both autism research and practice (see here and see here). Figures suggest that around 1 in 4 children diagnosed with an autism spectrum disorder (ASD) will consistently wander from home or school or other place, but this issue does not seem to be as widely talked about or parents/caregivers consistently given as much information about it as they should.

Pereira-Smith and colleagues asked nearly 400 parent-caregivers of children and young people diagnosed with an autism spectrum disorder (ASD) about their [child's] experience of wandering/elopement. They asked questions about who did it, "preventive measure use, and sociodemographic characteristics" of their cohort.

Results: "Two hundred and sixty-seven caregivers (68%) reported elopement by their child." That figure is way over the 1 in 4 estimate that has been previously banded around. Researchers also found that wandering was not confined to any one "sociodemographic characteristics, nor with any specific comorbidity or neurobehavioral medication." Kids and young people across the autism spectrum wandered. That being said: "Children with limited communication skills were more likely to have a history of elopement." As for that word 'prevention', most families used "lock(s) at top of doors" with other families utilising "handicap permits, signs/visual markers, or tracking devices" albeit to a lesser degree than locks. Researchers conclude that "use of specific preventive measures can help guide recommendations for this dangerous comorbid symptom, and provide information needed for future studies to assess the efficacy of various preventive measures." Who would argue with that?

Oh, and just to let you know that there are some autism organisations who have really taken a lead in this area (see here)...

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[1] Pereira-Smith S. et al. Preventing elopement in children with autism spectrum disorder. Autism Res. 2019 Apr 29.

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Suicide risk and autism: data from "Utah over a 20-year period"

The findings reported by Anne Kirby and colleagues [1] are not for the faint-hearted but continue a vitally important theme in autism research and practice circles looking at suicide risk and autism (see here and see here). The 'value-added' bit to the Kirby results to distinguish them from other study in this area was the reliance on data across a 20-year period from a place that has some important autism research history: Utah in the United States (see here).

So: "Four sources of existing data were utilized for this study: URADD statewide autism surveillance data, statewide suicide surveillance data collected by the Utah Office of the Medical Examiner (OME), the UPDB, and Utah's Indicator‐Based Information System for Public Health (IBIS‐PH)." From such data sources, researchers accessed information for nearly 17,000 people diagnosed with an autism spectrum disorder (ASD) "alive at the beginning of 1998 and at least 5 years of age in 2013." Most were male and most were white. They similarly determined that nearly 9,000 people in their total population - not just those diagnosed with ASD - died by suicide between 1998 and 2017. Again, most were male and most were white. The data were combined and interrogated "to calculate the incidence (in 5‐year intervals) of suicide deaths in people with ASD over a 20‐year period (1998 to 2017) in total, as well as by sex, and compared suicide risk in people with versus without ASD." Researchers also looked at other important variables such as "sex, race, death age, occupational status, marital status, and manner of death" across the groups.

Results: "In the first 15 years of the study (1998–2012), we did not observe differences in suicide cumulative incidences between the ASD and non‐ASD populations." This means that when the groups were compared as a function of death by suicide, the figures for those with autism were not significantly different from those without autism for this time period. By saying that I don't want to belittle the fact that between 1998 and 2012 for example, 2 people out of 5,202 autistic people died by suicide or that 1,671 out of 1,928,484 non-autistic people died. Each of these figures was a person with a life and with a family, and that's something that should never ever be forgotten.

The pattern however changed when researchers looked at the period between 2013 and 2017: "For the most recent time interval (2013–2017), the cumulative incidence of suicide death in the ASD population was 0.17%, which is significantly higher than the non‐ASD population cumulative incidence of 0.11%." This percentage (0.17%) represented 28 deaths from an autistic population of 16,907 and 2,791 deaths from a non-autistic population of 2,630,221. Although a sideline point, I'll also bring to your attention how the autistic population numbers changed over the 5-year blocks of study in the Kirby paper: 1998-2002: 5,202 people; 2003-2007: 8,722 people; 2008-2012: 13,890 people; 2013-2017: 16,907 people.

A few other details were observed by Kirby et al: "In comparison with non‐ASD + suicide cases, ASD + suicide cases had significantly younger average death ages (32.4 years vs. 41.8 years; t = −3.8, P < 0.001)." Also: "Combined, 73% of the ASD + suicide cases used methods for suicide considered to be violent; the remaining 26% used nonviolent methods." This again, is important information.

Researchers also mention how across the 2013-2017 period, another important trend was observed: "suicide risk in females with ASD was over three times higher than in females without ASD (relative risk (RR): 3.42; P < 0.01)." They contrast this with the finding that "there were no documented cases of suicide death among females with ASD during the first 15 years of the surveillance period" and what this could mean when it comes to possible explanations of suicide risk in relation to autism.

There's quite a bit to learn from the Kirby findings. Although there are limitations attached to the study design - "inadequate data on intellectual ability was available to examine the influence ID may have on suicide risk in individuals with ASD" - the study was a good one because of its population-wide focus and the pretty good autism-related resources that Utah has (and has had for many years). It demonstrates once again that the difficult topic of suicide and autism should remain a research priority in order to identify who might be most at risk and why, alongside the ways and means that such risk *might* be mitigated (see here for one example).

And for those who might need someone to text / email / talk to, there are always options (see here for services in the UK or see here for those elsewhere).

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[1] Kirby AV. et al. A 20-year study of suicide death in a statewide autism population. Autism Res. 2019 Jan 21.

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Vaccination rates and patterns among kids with autism and their siblings (again)

The publication of the paper by Ousseny Zerbo and colleagues [1] garnered some media headlines insofar as their conclusion that: "Children with ASD [autism spectrum disorder] and their younger siblings were undervaccinated compared with the general population."

Drawing on data from "6 integrated health care delivery systems across the United States within the Vaccine Safety Datalink" researchers looked at immunisation status for over 3700 children diagnosed with ASD and over half a million kids not diagnosed with autism alongside their respective younger siblings. They were specifically looking at the proportion of children who "received all of their vaccine doses according to ACIP [Advisory Committee on Immunization Practices] recommendations."

Results: "For vaccines recommended between ages 4 and 6 years, children with ASD were significantly less likely to be fully vaccinated compared with children without ASD." Vaccination rates were also significantly lower for younger siblings of those with autism too. Further discussion of the details of the Zerbo results can be seen here.

Although headline grabbing, this research topic - vaccination rates among children with autism and their siblings - is by no means a new one (see here and see here for examples). The Gena Glickman findings [2] published last year (2017) for example, did not attract the same degree of media attention but highlighted how (a) parents of children diagnosed with autism were extremely vaccine compliant when it came to their earlier born children, and (b) "Families with children who had autism spectrum disorder were less likely to vaccinate subsequent children." To quote from some of the media on the latest Zerbo paper: ""We did not look at vaccination rates before the children were diagnosed with autism," Zerbo noted"; a pretty important omission by all accounts.

What's then also missing from the current data in this area? Well, the question of why - why are children with autism and their siblings less likely to be vaccinated - is a rather glaring omission, and one that stretches into other age ranges [3] too. Yes, it's easy to say that 'fear of the autism-vaccine link' is a primary reason for the undervaccination statistics, particularly with the data on age being a factor in the Zerbo findings and despite the 'too many too soon' argument having some strong evidence against it (see here). But... as per the Glickman and other data, many parents are/were extremely vaccine compliant when it came to earlier born children. If they were going to have long-standing fears about vaccination and indeed, act upon those fears, I would have thought that they would have influenced vaccination behaviour across all their children and not just as and when autism was diagnosed in a family member. Neither do I give much [research-based] credence to the idea that parents of children with autism are somehow over-represented among the so-called 'anti-vaxxer' groups (see here); not that is, as being a long-standing issue.

Glickman et al do provide another possible explanation in their study results that: "changes in vaccination behavior may relate to adverse reactions to vaccine" in their cohort. A sort of once bitten, twice shy sentiment if you like *might* potentially be in action, which kinda makes more sense. I know this takes us down a rather uncomfortable path in that, whilst acknowledging that vaccines represent an important cornerstone of modern healthcare (yes, they do), they are not somehow magically without side-effects for some. Hackles are bound to be raised by such utterances; despite some potentially important clues already appearing in the peer-reviewed research literature [4] relevant to this topic. But without even attempting to try and answer such 'why' questions, we are left with a fairly large number of children who "are at increased risk of vaccine-preventable diseases" with no real solutions in sight for protecting their health and/or the health of the wider population.

Answers are therefore required and required quickly. The simplest and perhaps most logical solution I can see would be to go and ask parents/primary caregivers, under scientifically controlled study, why their children are undervaccinated; perhaps building on important work such as that by Hilton and colleagues [5]. There is the issue of recall to overcome (see here) and I'm sure the range of answers is going to be long and complicated in relation to undervaccination. Armed however, with such answers or at least clues from the parents/caregivers themselves and not just 'speculation', science and policy can perhaps then start to move things forward to further protect the health of all concerned. Hopefully also, such knowledge can be used to chip away at yet another important health inequality that seems to follow a diagnosis of autism throughout the lifespan (see here)...

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[1] Zerbo O. et al. Vaccination Patterns in Children After Autism Spectrum Disorder Diagnosis and in Their Younger Siblings. JAMA Pediatrics. 2018. Mar 26.

[2] Glickman G. et al. Vaccination Rates among Younger Siblings of Children with Autism. N Engl J Med. 2017 Sep 14;377(11):1099-1101.

[3] Filliter JH. et al. The next vaccine-autism question: Are school-aged youth with autism spectrum disorder undervaccinated and, if so, why? Paediatr Child Health. 2017 Aug;22(5):285-287.

[4] Poling JS. et al. Developmental regression and mitochondrial dysfunction in a child with autism. J Child Neurol. 2006 Feb;21(2):170-2.

[5] Hilton S. et al. MMR: marginalised, misrepresented and rejected? Autism: a focus group study. Archives of Disease in Childhood. 2007;92(4):322-327.

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Bullying and autism: not always originating from where you might expect...

There is something rather uncomfortable about the findings reported by Imar Toseeb and colleagues [1] but, at the same time, they do raise an important issue that needs to be openly discussed. Specifically their findings on: "sibling bullying, and the associated psychopathological adversities, in children with and without ASD [autism spectrum disorder]" deserve some airtime.

Bullying and autism is quite a regular talking point in the peer-reviewed research literature (see here) and beyond. Although a diagnosis of autism is by no means protective of someone becoming a bully or being involved in what could be considered bullying behaviour, it is far more typical that those with autism are going to be a victim of bullying rather than perpetrator (see here). Indeed, I reluctantly use the word 'vulnerable' yet again on this occasion but...

When one thinks about bullying in any context including that with autism in mind I would imagine that the school bully who name calls or becomes physical aggressive towards someone - usually smaller and quieter than them - probably first springs to mind. Siblings by contrast, conjure up an image of being caring, supportive and again, with autism in mind, often very protective of their brother(s) and/or sister(s) given their important role, present and probably future. And indeed, many, many siblings are just that (see here).

But real life is rarely so clear-cut or 'homogeneous' as many parents, whether with children diagnosed with autism or not, will attest. Siblings argue, fight and probably because of how well they 'know each other', often know all the right buttons to press to get their required reaction. And yes, behaviour sometimes can spill over to what would be considered bullying under any other circumstance...

Toseeb et al started with the hypothesis that: "children with ASD (child has ASD but their sibling does not) would experience higher levels of sibling bullying compared to those without ASD (child and sibling do not have ASD)." They arrived at this hypothesis on the basis of various factors such as a role for the social-communicative issues that follow autism, the possible effect of the 'broader autism phenotype' (BAP) on siblings, and issues such as a greater frequency of aggression - "reactive aggression" - accompanying particularly boys with autism.

They relied on data from the Millennium Cohort Study (MCS) (a resource that has been mentioned before on this blog) and eventually included data from nearly 500 children with autism alongside over 13,000 not-autism controls. The question(s) on sibling bullying were asked at 11 years of age and went: "he/she was asked to respond to two questions on a six-point scale (never, less often, every few months, approximately once a month, approximately once a week, most days): “how often do your brothers or sisters hurt you or pick on you on purpose?” (victimization) and “how often do you hurt or pick on your brothers or sisters on purpose?” (perpetration)." Responses were coded according to who did what and how often. Various other measures were also examined as part of the MCS and used in the Toseeb paper: socio-demographic data (single parent status, birth order, number of siblings, household incomes), parenting style, psychopathology and cognition.

Results: children diagnosed with autism or ASD were more likely to be bullied by their non-autistic sibling compared with those who did not have autism. This finding held "even after controlling for socio-demographic and family level variables" and "was associated with adverse psychopathologies." Further: "having ASD, being a girl, of White ethnicity, having more siblings, and experiencing harsher parenting were all associated with increased odds of being bullied by a sibling." Whilst we're on the topic of 'adverse psychopathologies, it's perhaps pertinent to mention the findings reported by Dantchev and colleagues [2] observing a possible connection between sibling bullying receipt and psychotic disorder. Yes, it is quite an extreme example, but nonetheless demonstrates the effects bullying can have long-term. I might also refer you back to some discussion arising from the ICF core sets development with autism in mind too (see here).

I digress. I note also that authors discuss sibling bullying as a two-way street: "Our findings indicate that children with ASD are specifically at increased risk of sibling victimization as a bully-victim."

As I said at the beginning of this post, this all makes for uncomfortable reading. If it's not bad enough that a child may be being bullied at school to also then potentially learn that there is little respite from such behaviour at home, makes for an uncomfortable (intolerable?) situation all-round. The question then arises minus any sweeping generalisations: what can be done about sibling bullying for the good of all concerned? And please, don't just solely suggest 'coping strategies' for the bullying victim either.

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[1] Toseeb U. et al. The Prevalence and Psychopathological Correlates of Sibling Bullying in Children with and without Autism Spectrum Disorder. J Autism Dev Disord. 2018 Feb 8.

[2] Dantchev S. et al. Sibling bullying in middle childhood and psychotic disorder at 18 years: a prospective cohort study. Psychological Medicine. 2018. Feb 12.

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Obesity and overweight in autism meta-analysed

So: "The meta-analysis showed a significant association between obesity and ASD [autism spectrum disorder]. However, no significant association was identified between overweight and ASD."

Those were the conclusions reached by Zhen Zheng and colleagues [1] (open-access) who surveyed the pertinent peer-reviewed science literature up to November 2016 on the topic of the prevalence of overweight and obesity in relation to the autism spectrum (see here).

Including some 15 studies in their meta-analysis mix "encompassing 49,937,078 participants and 1,045,538 individuals with ASD" authors observed a connection between obesity and autism (a body mass index - BMI - between 30 and 39 for obesity and 40 and over for severely obese) but not being overweight. Among the many analyses undertaken by the authors, we are told that "the sensitivity analysis showed that removing any study did not change the final results, suggesting that our findings were robust."

Zheng et al have covered many bases when it comes to the interpretation of their findings. Feeding and eating issues potentially making "healthy dietary interventions less effective"... check (see here). Physical activity levels and 'sedentary activities'... check (see here). Potential side-effects of medication - antipsychotic medication in particular - check (see here). Also: "some individuals with ASD have been reported to have 16p11.2 or 11p14.1 microdeletions, which encompass genes related to obesity susceptibility." Yup, some genetic conditions that manifest autism also place that person at a greater risk for weight issues, either directly or peripherally.

Minus any sweeping generalisations, there are some obvious implications from such results. Obesity places a person at some heightened risk for various adverse health outcomes and potentially, early mortality outside of other, more socially-defined adversities. Prevention and treatment are key. Yes, facets of autism may make intervention slightly more complicated than perhaps noted in not-autism populations but that does not mean that one should not try to impact on the variables that lead someone down a pathway to obesity. And such intervention should be multi-faceted and perhaps also take into account a role for comorbidity that seemingly follows autism (see here)...

Oh, and probably relevant to today's posting, the scientific support for the old "healthy at every size" notion is dwindling...

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[1] Zheng Z. et al. Association among obesity, overweight and autism spectrum disorder: a systematic review and meta-analysis. Sci Rep. 2017 Sep 15;7(1):11697.

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"evidence to date is overwhelmingly in favour of lithium as an antisuicidal agent"

If the systematic review and/or meta-analysis sits at the top of the evidence-based pyramid then a systematic review of existing systematic reviews in a particular area should perhaps be the cherry on the top.

The paper published by Katharine Smith & Andrea Cipriani [1] is that cherry on top of the pyramid, looking at a topic of some interest to some of this authorship group [2] on how the "evidence to date is overwhelmingly in favour of lithium as an antisuicidal agent."

I've talked about lithium a few times on this blog (see here and see here) including research pertinent to the idea that the lithium content of public drinking water supplies might show an interesting *relationship* with suicide rates roundabout (see here). Such work stemming from the idea that lithium might have some rather important (positive) influences on suicide prevention [3] for whatever reason(s).

Smith & Cipriani searched the peer-reviewed literature for "systematic reviews and meta-analyses of RCTs [randomised controlled trials] of lithium and suicide and self harm." They found a handful of papers meeting their guidance and with them 'overwhelming' evidence that lithium does seem to impact on risk of suicide. They comment on the fact that there is more to do in this area; for example on: "the supporting evidence that observational and non-randomized studies can also provide" but present an important case that lithium use "should be incorporated more assertively into current guidelines" when it comes to suicide prevention.

Bearing in mind the cost-benefit profile of lithium [4] and that suicide - whether ideation, attempt or completion - stems from a complicated (and often individual) set of circumstances, this is one area where the term 'life-saving' is not to be under-emphasised. And I can think of at least one label where quite a bit more 'life-saving' is required (see here)...

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[1] Smith KA. & Cipriani A. Lithium and suicide in mood disorders: Updated meta-review of the scientific literature. Bipolar Disord. 2017 Sep 12.

[2] Cipriani A. et al. Lithium in the prevention of suicide in mood disorders: updated systematic review and meta-analysis. Database of Abstracts of Reviews of Effects (DARE). 2013.

[3] Lewitzka U. et al. The suicide prevention effect of lithium: more than 20 years of evidence—a narrative review. International Journal of Bipolar Disorders. 2015;3:15.

[4] Albert U. et al. Lithium treatment and potential long-term side effects: a systematic review of the literature. Riv Psichiatr. 2014 Jan-Feb;49(1):12-21.

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Anxiety prevention meta-analysed and some implications...

"Psychological and/or educational interventions had a small but statistically significant benefit for anxiety prevention in all populations evaluated. Although more studies with larger samples and active comparators are needed, these findings suggest that anxiety prevention programs should be further developed and implemented."

That was the research bottom-line published by Patricia Moreno-Peral and colleagues [1] assessing the collected peer-reviewed literature pertinent to the question: "Are psychological and/or educational preventive interventions for anxiety effective in varied populations?" An accompanying editorial on the Moreno-Peral findings is also worthwhile reading [2].

The methodological name of the game was systematic review and meta-analysis followed by "meta-regression" to boil down data from some 29 studies examining whether "psychological and/or educational interventions are effective in the prevention of anxiety." Said interventions covered some ground but in the most part relied on the use of cognitive behavioral therapy (CBT).

I'm not going to say too much more about the Moreno-Peral findings because I think they speak for themselves. I do however want to make comment on the authors' use of the term 'varied populations' to highlight potential implications for a couple of populations pertinent to this blog: (a) the autism spectrum and (b) those diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

Starting with autism, there are two salient points to make: (i) anxiety is pretty rife in relation to autism (see here and see here) and (ii) treating anxiety in relation to autism already has some peer-reviewed science efforts (see here) but little so far has seemingly been done on the point of potentially heading-off clinically relevant anxiety before it takes hold. I say this mindful of the idea that core symptoms linked to autism might be potential 'anxiety-provokers' (see here). Quite a bit more research is needed to ensure that psychological and/or educational interventions for anxiety currently available are specifically tailored to the wants and needs of those on the autism spectrum (including all of the spectrum!) but this area promises quite a bit. It's also worth appreciating that there may be a place for other types of prevention/intervention when it comes to anxiety (see here for example) in the context of autism (see here).

I also mentioned the [careful] application of the Moreno-Peral findings to CFS/ME. Coincidentally at the time of writing this post, I stumbled across the paper by Sarah Stoll and colleagues [3] asking: 'What treatments work for anxiety in children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)?' The answer, based on the available literature is 'we don't know yet' with the requirement for more investigations.

I tread very carefully in this area based on the fact that whilst anxiety does seem to be part and parcel of some CFS/ME (see here), suggestions about the possible usefulness of something like CBT to manage anxiety have to viewed in the context of CBT still courting controversy as part of the biopsychosocial 'view' of CFS/ME (see here) (something that is relevant to other recent discussions about CFS/ME). Indeed, one might see the Stoll findings in the context that the 'failure' of interventions like CBT in relation to treating core CFS/ME (see here for what I mean by 'failure') is moving some people along to still try and stick with CBT but re-do and re-apply it in the context of treating more peripheral signs and symptoms accompanying CFS/ME such as anxiety. I might be wrong but...

To close, but keeping the CFS/ME link in mind, I once again note a welcomed U-turn from NICE (National Institute for Health and Care Excellence) on the topic of CFS/ME: "The strong message from stakeholders was that the continuing debate about the causes of this condition and the best approach to treatment argued for a review of the current guideline." I've said it before and will say it again: patient-power has driven this reconsideration (see here)...

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[1] Moreno-Peral P. et al. Effectiveness of Psychological and/or Educational Interventions in the Prevention of Anxiety. JAMA Psychiatry. 2017. Sept 6.

[2] Hudson JL. Prevention of Anxiety Disorders Across the Lifespan. JAMA Psychiatry. 2017. Sept 6.

[3] Stoll SVE. et al. What treatments work for anxiety in children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)? Systematic review. BMJ Open. 2017; 7: e015481.

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One of the best articles to discuss suicide risk and autism so far...

I'm cheating a little bit today as minus too much critical commentary or discussion, I'm drawing your attention to the paper by Tony Salvatore and colleagues [1] (open-access) on a most important topic: suicide risk and autism.

Written by authors who between them seem to know quite a bit about autism and also managing suicide prevention particularly under crisis conditions, I reckon this review article is one of the best we have so far in this area. I say that on the basis that not only are estimated prevalence figures included in the text but two very important discussion points on the key risk factors and also what might be protective against suicide behaviours are included. Importantly, the authors suggest that "suicide risk factors are similar for adults with and without ASD [autism spectrum disorder]". So rather than seeing suicide in relation to autism as something detached from suicidal behaviour on other occasions in other groups, they suggest common risk factors including comorbid mental illness as potentially 'precipitating suicidal ideation' or at least, increasing vulnerability to such behaviour are important.

Yes, I know we still have quite a way to go before any road maps or definitive protocols/toolkits are available to manage suicide risk in autism. But the Salvatore paper is as good a document as any to read on this important topic and potentially making moves to off-set at least some of the risk of this devastating behaviour. I might also add that other texts including talk of an 'acquired capability for suicide' among some groups might also offer some important links between something like self-harm and suicide risk which could also be relevant to [some] autism [2]. More investigations are very much needed including on the topic of suicide prevention [3].

And when it comes to biological risk factors also potentially associated with / linked to suicidal behaviour, the meta-analysis from Chang and colleagues [4] (open-access) initially highlighting fish oils and cytokines (inflammation?) as potentially being important might similarly prove applicable in the context of autism (minus any sweeping generalisations)...

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[1] Salvatore T. et al. Suicide Risk in Adults with Autism Spectrum Disorder: An Exploratory Discussion. The Journal of Special Populations. 2016; 1: 1.

[2] Paula-Perez I. & Artigas-Pallares J. Vulnerability to self-harm in autism. Rev Neurol. 2016;62 Suppl 1:S27-32.

[3] Zalsman G. et al. Suicide prevention strategies revisited: 10-year systematic review. Lancet Psychiatry. 2016 Jul;3(7):646-59.

[4] Chang BP. et al. Biological risk factors for suicidal behaviors: a meta-analysis. Translational Psychiatry. 2016. Sept 13.

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Chang, B., Franklin, J., Ribeiro, J., Fox, K., Bentley, K., Kleiman, E., & Nock, M. (2016). Biological risk factors for suicidal behaviors: a meta-analysis Translational Psychiatry, 6 (9) DOI: 10.1038/tp.2016.165

Filicide and autism

"The choice of the victim was in line with emerging evidence indicating that children with disabilities in general and with autism in particular are frequent victims of filicide-suicide."

The case report presented by Declercq and colleagues [1] reflects yet another uncomfortable topic discussed on this blog and how the 'deliberate act of murdering ones own child' is something unfortunately not unfamiliar when it comes to the label of autism. Declercq et al provide quite a raw account of paternal filicide and how circumstances and state of mind may have been important variables in determining the eventual outcome. Not least is the intersection between "schizoid personality disorder and homicide and violence" that appears to have been linked to such an act (minus any sweeping generalisations).

This is not the first time that the words 'filicide' and 'autism' have appeared together in the peer-reviewed science domain as per other examinations of media reporting of such acts [2] that have revealed a disturbing trend when it comes to "disabled children as victims of filicide-suicide." The fact that some authors have even gone as far as talking about "prevention strategies" [3] specifically with filicide in families with autistic children should tell you that despite being an uncomfortable discussion, this is not something that can be just brushed under the carpet.

Having read about quite a few accounts of filicide-suicide where autism has figured down the years and the many and varied responses to such acts (see here and see here for example), it's clear that there are a number of different viewpoints when it comes to this emotive topic. Murder is murder and that point should never be forgotten; made all the more harrowing by the fact that it was a parent and a trusted caregiver who carried out such a heinous act. Irrespective of circumstances, the murdered child is the victim; let us not forget that.

I also believe that it is right to research and question how and why such acts come about. In the same way that the motives of autistic people who themselves kill a parent (although rare) need to be understood, so one needs to know what might drive a parent to kill their child with autism. Such questioning does not condone such actions; neither does it or should it lessen the impact of such actions. It merely highlights the idea that to know why such acts occur can potentially prevent further instances happening in other cases. If such knowledge saves only one child, it will be worthwhile.

I'm not going to venture further into the possible reasons why parents murder their children - whether with autism or not - because they are likely to be complex and variable from case to case bearing in mind that becoming a parent does not automatically make a bad person into a good person. What I will reiterate is that murder is murder and if there is even the slightest hope that science can identify factors that might place a child at risk, resources aplenty should be poured into looking.

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[1] Declercq F. et al. A Case Study of Paternal Filicide-Suicide: Personality Disorder, Motives, and Victim Choice. J Psychol. 2016 Aug 18:1-13.

[2] Coorg R. & Tournay A. Filicide-suicide involving children with disabilities. J Child Neurol. 2013 Jun;28(6):745-51

[3] Palermo MT. Preventing filicide in families with autistic children. Int J Offender Ther Comp Criminol. 2003 Feb;47(1):47-57.

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Declercq F, Meganck R, & Audenaert K (2016). A Case Study of Paternal Filicide-Suicide: Personality Disorder, Motives, and Victim Choice. The Journal of psychology, 1-13 PMID: 27537187

Health service use, autism and preventative medicine

Appreciating that the title of this post potentially offers the opportunity to write a long (very long) post, today I'm specifically focusing on two papers. The first by Janet Cummings and colleagues [1] discussing health service use "among youth with and without an autism spectrum disorder (ASD)" concluded that yes, young people with autism were more likely to experience health service use than not-autism control populations. Importantly however, was the suggestion that this group were "less likely to receive important preventive services including flu shots and other vaccinations."

The second paper to bring into discussions is that from Paul Carbone and colleagues [2] who examined "the prevalence of hospitalizations for ambulatory care sensitive conditions (ACSC) in children with and without autism spectrum disorder (ASD)." ACSC in case you did not click on the highlighted link, refers to chronic conditions "for which it is possible to prevent acute exacerbations and reduce the need for hospital admission through active management, such as vaccination; better self-management, disease management or case management; or lifestyle interventions."

Based on data derived from a '2009 Kids' Inpatient Database' researchers concluded that hospitalisations for ACSC were quite a bit more frequent than for those with either other chronic conditions outside of autism or those without any chronic conditions at all. Indeed compared with that 'no chronic conditions at all' group, those with autism were more likely to be admitted for a variety of issues including "a mental health condition, epilepsy, constipation, pneumonia, dehydration, vaccine-preventable diseases, underweight, and nutritional deficiencies."

Without over-analysing the results of these collected investigations, the primary issues presented seem to be: (a) that people diagnosed on the autism spectrum are more likely to use healthcare services than non-autism controls, and (b) although many of the 'ailments' for which treatment is sought have been previously recognised in the research and clinical literature, the idea of preventative medicine, and the potential benefits that it can bring, is still to some degree missing when looking at the wider picture of health and wellbeing with autism in mind.

Preventative medicine casts a wide net in terms of what is covered. Having previously discussed important lifestyle issues such as diet and exercise when it comes to the autism spectrum on this blog (see here and see here for example) I've been particularly interested in how science can offer some solutions for issues such as getting people more physically active or recognising the value of a balanced diet (and where certain dietary extremes can eventually lead). Discussions about bowel issues in relation to autism have also been ramped up in recent years as science cottons on to what many people have been saying: functional and pathological bowel issues are over-represented when it comes to a diagnosis on the autism spectrum (see here).

The associated findings that rates of "vaccine-preventable diseases" may be increased in some of the analysed cohorts with autism and/or that immunisation as part of a strategy of preventative medicine might be diminished are worrying trends. I know this area still attracts some discussion alongside more general debates about vaccines for example [3] but as part of the arsenal of initiatives to improve public and 'personal' health, one might see such findings as part of a wider issue with health inequality when it comes to autism. Indeed, if one looks to the future and the idea that autism is not generally a life-limiting condition (at least not for many), one wonders what the long-term future holds for older adults with autism in light of the potential seriousness of something like influenza for older populations (see here) for example?

Music to close and Axis of Awesome talk number 1 hits...

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[1] Cummings JR. et al. Health Services Utilization Among Children With and Without Autism Spectrum Disorders. J Autism Dev Disord. 2015 Nov 7.

[2] Carbone PS. et al. A Comparison of Ambulatory Care Sensitive Hospitalizations Among Children With and Without Autism Spectrum Disorder. Acad Pediatr. 2015 Nov-Dec;15(6):626-635.

[3] Suryadevara M. et al. Pediatric provider vaccine hesitancy: An under-recognized obstacle to immunizing children. Vaccine. 2015 Oct 31. pii: S0264-410X(15)01552-2.

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Cummings JR, Lynch FL, Rust KC, Coleman KJ, Madden JM, Owen-Smith AA, Yau VM, Qian Y, Pearson KA, Crawford PM, Massolo ML, Quinn VP, & Croen LA (2015). Health Services Utilization Among Children With and Without Autism Spectrum Disorders. Journal of autism and developmental disorders PMID: 26547921




Carbone PS, Young PC, Stoddard GJ, Wilkes J, & Trasande L (2015). A Comparison of Ambulatory Care Sensitive Hospitalizations Among Children With and Without Autism Spectrum Disorder. Academic pediatrics, 15 (6), 626-635 PMID: 26547543

Higher cognitive 'level' = more vulnerability to depression alongside autism?

Regular readers of this blog probably know that I don't like sweeping generalisations when it comes to autism.

Y'know, all those ideas and theories that have been put forward down the years about the exclusivity and total generalisability of this, that and t'other to autism, which have inevitably fallen by the wayside as science truly starts to understand why autism is called a heterogeneous condition or even conditions (plural).

First it was issues with Theory of Mind (ToM) (see here) and now executive function issues has been given the 'cross-disorder' treatment [1]. I foresee the complicated issue of brain connectivity (hypo- or hyper-?) and autism heading the same way in the near future...

With all that in mind I'm cautiously bringing the review paper by Myriam De-la-Iglesia & José-Sixto Olivar [2] (open-access available here) to your attention today and a topic that can very much affect a person's quality of life in the context of autism: depression.

OK, to start I should perhaps be a little careful with using the word 'depression' as if denoting some singular, universal condition. It's not. Indeed, some people have suggested that depression or depressive illness is but one aspect of a 'cloud' of conditions (somatic and/or psychological) all interacting together, so one needs to be aware of the blurriness of any diagnosis. With autism in mind, depressive illness is a research topic in the ascendancy in terms of how it interacts with autism (see here) (including potentially interacting with other somatic comorbidity too) and what might be the key components of depression present alongside autism (see here). That certain types of depression might be over-represented when it comes to autism is a key issue too (see here).

De-la-Iglesia & Olivar took on quite a wide topic in their review article: "to examine, discuss, and provide proposals on diagnostic comorbidity of depression in children and adolescents with high functioning autism spectrum disorder (HFASD)" in relation to various aspects (prevalence, factors linked to vulnerability, risk of suicide and how to assess symptoms). I might add that their focus on "high functioning autism spectrum disorder" reflects their terminology and not mine and perhaps suggests further caution with regards to 'generalisability'.

Their review is open-access so it doesn't need any grand discussions from me, but I will pull out a few important points made in the article.

First: "Depression is common in prevalence in ASD." I don't need to say much more to that aside from forwarding the idea that preferential screening for depression in cases of autism might need to be more widespread than it currently is. This may also require some artistic medicine in terms of making screening more appropriate to the very heterogeneous target population.

Then: "children with autism that have depression are more likely to have a family history of depression." Being careful not to fall into yet more over-generalisation traps, there is some peer-reviewed evidence to suggest that issues with depression do indeed run deep in families where autism features. The potentially complicated relationship between anti-depressant medication use during pregnancy and offspring autism outcomes provides some of the clearest evidence of a relationship (see here).

Continuing: "the majority of the studies on children with autism show that the older the child and the greater the intelligence quotient (IQ), the greater the incidence of depression." Harking back to the title of this post, I think this is perhaps one of the most important features of depression when discussed in the context of autism. One could follow the De-la-Iglesia / Olivar line that: "The majority of higher functioning individuals with ASD are aware of their social difficulties and this awareness may in turn lead to greater pathology and the development of comorbid psychiatric problems" as accounting for the elevated risk of psychopathology but I'd be tempted to suggest that this might not be the only relevant factor. I do however also wonder whether 'awareness' of difficulties, might also account for other issues seemingly over-represented in autism such as certain types of anxiety too?

Then: "it is possible that the feeling of loneliness, fuelled by the poor social relationships that individuals with ASD have, contributes to greater levels of depression." I don't think that anyone would disagree with the idea that a person's environment could be contributory to their mood and onwards risk of something like depression. As per the findings reported by Schmidt et al [3]: "Participating in society was identified as the only factor predicting life satisfaction in individuals with ASD." Add to that also the idea that: "Negative events such as parents getting divorced, illnesses, death, frequent parental discord, or changing residences have been related to clinical depression, both in children and in adults" and one sees how many variables can combine to bring someone to the label.

Although perhaps not great dinner party conversation, I want to finish on the point made by De-la-Iglesia & Olivar regarding how depression manifesting in autism might tie into discussions about suicide (either ideation or completion).

There is a realisation that suicide ideation in the context of depression in autism is something we need to talk a lot more about (see here). This also taps into the quite disturbing trend of euthanasia requests where autism is mentioned (see here). The authors provide an interesting summary table of factors associated with risk of suicide in relation to autism (see here) which I found to be perhaps one of the most descriptive so far in the autism research literature. Indeed, the implication of 'affecting' one or more of the pathways listed to reduce any risk of suicide perhaps offers some important fodder for future research and practice in this area?

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[1] McGrath LM. et al. Extending the 'cross-disorder' relevance of executive functions to dimensional neuropsychiatric traits in youth. J Child Psychol Psychiatry. 2015 Sep 28.

[2] De-la-Iglesia M. & Olivar JS. Risk Factors for Depression in Children and Adolescents with High Functioning Autism Spectrum Disorders. ScientificWorldJournal. 2015;2015:127853.

[3] Schmidt L. et al. Psychosocial Functioning and Life Satisfaction in Adults With Autism Spectrum Disorder Without Intellectual Impairment. J Clin Psychol. 2015 Sep 25.

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De-la-Iglesia M, & Olivar JS (2015). Risk Factors for Depression in Children and Adolescents with High Functioning Autism Spectrum Disorders. TheScientificWorldJournal, 2015 PMID: 26413564