What's potentially behind self-injury coincidental to autism?

"Alexithymia, depression, anxiety and sensory differences may place some autistic individuals at especial risk of self-injury."

Those were some of the conclusions reached in the paper published by Rachel Moseley and colleagues [1] (open-access) following their investigation of an important topic - non-suicidal self-injury (NSSI) - in relation to autism "without intellectual disability." Self-injurious behaviour (SIB) is not a pleasant topic to talk about, but is important to quite a few people diagnosed as being on the autism spectrum (see here and see here).

Drawing on data provided by over one hundred adults with autism (autistic adults if you prefer), half of whom were categorised as 'current self-harmers', a quarter of whom were 'historic self-harmers' and a quarter of whom were 'non self-harmers', researchers set to work "to examine alexithymia, mentalising impairments, autistic traits and sensory differences" as possible important variables for NSSI. Alexithymia by the way, is described as "the subclinical inability to identify and describe emotions in the self." Researchers utilised several different questionnaires including a tool specifically designed to test for NSSI: The Non-Suicidal Self-Injury Assessment Tool (NSSI-AT), a "comprehensive instrument [that] documents the nature and bodily location of any self-injurious behaviours; their functional utility; their recency, frequency and likelihood of reoccurrence; the age of onset of self-injury; the severity of injuries" among other things. Results were collated and analysed.

Alongside the headline finding that was included in the opening sentence to this post, other interesting details also emerged from the data. So: "Of the 76 current and historic self-harmers, 60 could recall the onset of self-injury at an average age of 15.1 years." Bearing in mind that 15.1 years was an average age of onset, such a finding potentially provides a developmental window when self-harming could maybe be screened for and interventions put in place. Indeed, from what I understand, this is a fairly typical time of onset for self-injury in the general population minus any sweeping generalisations.

Also: "The most common function of NSSI was the regulation of low-energy affective states (depression, dissociation), followed by the regulation of high-energy states such as anger and anxiety." There's an important word in that last sentence - regulation - that needs a lot more inquiry. It implies that self-injury is not just mindless violence against self but might actually serve some sort of purpose. Indeed, other recent papers have also mentioned regulation in the context of self-injury [2] too. Allied to other research suggesting that 'challenging behvaiours' might for example, under some circumstances, also serve a purpose (see here) and how self-injury could present in a variety of ways (see here), and there are leads to follow. Indeed, it could imply that teaching regulatory processes such as those linked to exercise (see here) or the use of meditative techniques (see here) could be worthwhile for some at least.

And just before I leave this topic, I'm minded to bring in another issue that could be investigated in the context of self-injury: interoception and body awareness in the context of autism (see here). Minus any psychobabble, interoception represents "the sense of the physiological condition of the body." It strikes me as possible that a reduced capacity for interoception in relation to autism, as has been talked about in other independent study [3], could be another important variable in the cycle of self-injury and another point of intervention...

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[1] Moseley RL. et al. A ‘choice’, an ‘addiction’, a way ‘out of the lost’: exploring self-injury in autistic people without intellectual disability. Molecular Autism. 2019; 10: 18.

[2] Weiner L. et al. A case study of suicidality presenting as a restricted interest in autism spectrum disorder. BMC Psychiatry. 2019; 19: 126.

[3] Fiene L. & Brownlow C. Investigating interoception and body awareness in adults with and without autism spectrum disorder. Autism Res. 2015 Dec;8(6):709-16.

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Sex differences in autism presentation continued

The paper by Ligia Antezana and colleagues [1] provides the brief blogging fodder today and some further focus on potential sex/gender differences when it comes to the presentation of autism (see here).

The aim of the study was a relatively simple one: "to identify whether specific RRBI [restricted and repetitive behaviors and interests] (i.e., stereotyped, self-injurious, compulsive, insistence on sameness, ritualistic, and restricted), as measured by item-level data on the Repetitive Behavior Scale-Revised (RBS-R), can distinguish girls from boys with ASD [autism spectrum disorder]." The sample was a pretty good size - "615 individuals with ASD (507 boys; 82.4%)" - and the findings were rather interesting...

So: "Items that best-discriminated gender were heightened stereotyped behaviors and restricted interests items in boys and compulsive, sameness, restricted, and self-injurious behavior items in girls." The authors add that: "This study is the first to find that girls with ASD may have increased compulsive, sameness, and restricted RRBI compared to boys."

Bearing in mind the care required when talking about sweeping generalisations about 'boy autism' and 'girl autism', the Antezana results do point to a need for further study in this area. Not least because the authors rightly mention how: "Future research should disentangle whether elevated rates of RRBI in girls are central to the presentation of ASD in girls or an epiphenomenon of the high rates of co-occurring disorders (e.g., anxiety) noted in girls." This based on the idea that autism rarely exists in some sort of diagnostic vacuum (see here) and some of that *comorbidity* (if that is the right word to use) could very well be part and parcel of such clinical observations.

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[1] Antezana L. et al. Gender differences in restricted and repetitive behaviors and interests in youth with autism. Autism Res. 2018 Dec 17.

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"an urgent need for autism treatment pathways in mental health services"

Of the many and varied important clinical and research areas connected to a diagnosis of autism or autism spectrum disorder (ASD), the provision of services to manage and treat mental health issues in the context of autism must rank high on the list of needs and priorities.

It's with this in mind that I turn my blogging attention to the findings reported by Louise Camm-Crosbie and colleagues [1] and their findings observing three important themes around the issue of mental health and (adult) autism: "(1) difficulties in accessing treatment and support; (2) lack of understanding and knowledge of autistic people with co-occurring mental health difficulties and (3) appropriate treatment and support, or lack of, impacted autistic people’s well-being and likelihood of seeing suicide as their future." All of this is set within the idea that various mental health issues seem to be over-represented when it comes to autism (see here and see here and see here  and see here for examples) and the lack of support and management of such issues can sometimes have devastating consequences (see here).

So: "In partnership with a steering group of autistic adults, an online survey was developed to explore these individuals’ experiences of treatment and support for mental health problems, self-injury and suicidality for the first time." The partnership bit ties in with the increasingly discussed 'participatory research' theme in some autism research circles (see here), where stakeholders are seen as partners driving a study or research agenda rather than just passive participants who are the topic of a particular study. The 'online survey' bit also continues a theme where technology means that participation doesn't mean having to be questioned face-to-face. Said survey was completed by 200 autistic adults ("122 females, 77 males and 1 unreported") and results covered an array of different issues, including some previously discussed by some authors on the Camm-Crosbie paper on other [important] research occasions (see here).

Alongside those three themes that emerged from the data, researchers also reported that: "In relation to treatment for mental health, self-injury and suicidality (n = 197), 164 participants (83.2%) were currently receiving/had previously received treatment, 29 participants (14.7%) needed/currently needed treatment but had not received it and 4 participants (2%) did not need treatment." As you can see from the figures, particularly that 2% not needing treatment, mental health issues (including self-injury and suicidality under that banner) are very much present when it comes to a diagnosis of autism, at least in this cohort.

Various other observations were reported on in the study; many of them pertinent to the another important theme coming from the article: "although participants reported experiences of being excluded from mental health services, with potentially tragic consequences for their well-being, there are also examples of participants benefitting from tailored support and treatment, which had a positive effect on their well-being." In other words, look to the individual and their wants, needs and wishes, and adapt accordingly. Not exactly rocket science.

So, what can be done to help ameliorate the issues identified by Camm-Crosbie et al and ensure that suitable 'tailored support and treatment' is offered? Well, the short answer is investment. Monetary investment. I could go for the 'low-hanging fruit' by saying that awareness of mental health issues in relation to autism needs to be improved among professional bodies, but the core material to aid such awareness is money. I could also go on about further dedicated resources needing to be put in place to support autistic adults (and children) with mental health issues, but the core material to get such resources is, once again, money. Money. And unfortunately in these austere times that we continually live in, where social care funding in particular, seems to have been cut to the bone, money for such issues is seemingly in short supply. Indeed, it seems that only when a crisis point is reached by an individual is anything actually done about something like mental health issues. And with all due respect to the hard working people who work in the mental health sector, after a crisis has been reached and 'managed', normal service seems to resume until another crisis comes along. The reason? Money yet again. The solution: put more money into this important issue. It will definitely help.

And whilst the focus of the Camm-Crosbie paper was adults with autism "without co-occurring intellectual disability", I also have to ask the question: what about those autistic people who are not able to complete online surveys and their mental health needs? Who's taking an interest in them? Are they, yet again, the understudied and underrepresented in autism research (see here)? There may be quite a bit to see [2]...

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[1] Camm-Crosbie L. et al. 'People like me don't get support': Autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism. 2018 Nov 29:1362361318816053.

[2] Baudewijns L. et al. Problem behaviours and Major Depressive Disorder in adults with intellectual disability and autism. Psychiatry Res. 2018 Dec;270:769-774.

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Gut symptoms are important for 'psychiatric outcomes' in autism

"Individuals with autism spectrum disorder (ASD) are at heightened risk of psychiatric comorbidities across the lifespan, including elevated rates of internalizing, externalizing, and self-injurious behaviors." And: "Gastrointestinal (GI) conditions are of particular interest, as they are prevalent among those with ASD, may share genetic or neurobiological etiologies with the core features of ASD, and are linked with psychiatric difficulties in the general population."

Putting the issue of 'psychiatric comorbidities' and 'gastrointestinal (GI) conditions' together are the results of the findings reported by Emily Neuhaus and colleagues [1] who concluded that: "the presence and quantity of GI symptoms should be considered when evaluating psychiatric and behavioral concerns among children with ASD." Importantly too, they talk about how 'alleviating' accompanying bowel issues in the context of autism *might* also have some important influences on some of those psychiatric issues.

The starting point for Neuhaus and colleagues was a recognition that autism does not exist in some sort of diagnostic vacuum. This means that various 'comorbid' conditions/labels seem to be over-represented when it comes to autism, covering the behavioural/psychiatric (see here) and also the somatic (see here). The authors specifically zoomed in on GI symptoms because they've mentioned over and over and over again as being part-and-parcel of quite a few instances of autism (see here). Marrying the psychiatric and gastrointestinal together, they had two aims: "First, we sought to document the prevalence and variety of GI concerns within a large, well-characterized sample of children and adolescents with ASD. Second, we sought to understand relationships between ASD symptoms and GI concerns over and above the effects of psychosocial factors."

So, authors "draw on data from nearly 2,800 children and adolescents with ASD within the Simons Simplex Collection" pertinent to their aims and objectives. The Simons Simplex Collection (SSC) is no stranger to autism research for various reasons (see here and see here). Importantly too, the SSC is not stranger to specifically looking at GI issues in relation to autism (see here). They reported that: "Consistent with previous literature, families in the SSC frequently reported that their child with ASD had significant GI symptoms" to the tune of over one third of their sample experiencing at least one GI symptom.

Looking at their types of psychiatric symptoms - "internalizing, externalizing, and self-injurious behaviors" - they observed "evidence of unique variance associated with GI symptoms across all three measures of psychiatric symptoms we examined." This didn't mean that GI symptoms were 'the' [singular] cause of those psychiatric/behavioural issues; merely that the presence of such physical symptoms should be considered as one possible factor alongside things like "ASD symptoms, verbal IQ, adaptive behavior, family income." Given that something like self-injurious behaviour (SIB) can be pretty hard-hitting in terms of effects on the person and the people around them (see here), the idea that GI issues might be 'in the mix' alongside "more ASD symptoms, lower adaptive behavior, lower income" should not be ignored. To quote again: "levels of GI symptoms accounted for unique variance in psychiatric outcomes over and above these other factors, linking increased GI problems with increased psychiatric symptoms in children with ASD."

There is a further scheme of work to be followed in this important area.

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[1] Neuhaus E. et al. Gastrointestinal and Psychiatric Symptoms Among Children and Adolescents With Autism Spectrum Disorder. Front. Psychiatry. 2018. Oct 22.

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"Risk markers for suicidality" and autism: masking or insight as a feature?

The findings reported by Sarah Cassidy and colleagues [1] continue an important research theme in relation to risk of suicide and autism (see here). The value-added bit to their research on this occasion was the observation that "there are unique factors associated with autism and autistic traits that increase risk of suicidality" and that some of these factors may be potentially modifiable.

Members of this research team have some important research history [2] when it comes to looking at suicidality and autism. This time around they report the results of an on-line survey completed by over 160 adults on the autism spectrum and a similar number of not-autistic controls. Prior to the delivery of this survey we are told that a steering group of autistic adults / adults with autism helped to target the research towards what factors might be relevant, including: "non-suicidal self-injury, mental health problems, unmet support needs, employment, satisfaction with living arrangements, self-reported autistic traits (AQ), delay in ASC [autism spectrum condition] diagnosis, and ‘camouflaging’ ASC."

"Results are consistent with previous findings that autistic adults are at significantly increased risk of suicidality compared to the general population." As worrying as that finding is, the observation that suicidality is elevated in relation to autism is nothing new. Indeed, as far back as the late 1990s, there were rumblings of 'under-reporting' of suicidality in relation to autism and related developmental disorders.

Continuing: Various psychiatric labels/conditions were identified as being present in those with autism at a greater frequency than controls. This included various 'comorbidities' previously discussed with autism in mind (see here and see here). Several of those conditions have also been identified as key risk variables when it comes to suicidality. I was also particularly drawn to the rate of personality disorder (PD) identified in this sample: 18% in females with autism compared with 3-4% in control females for example. This is interesting in light of other research explored on this blog (see here) and again, some evidence of an enhanced risk for suicide alongside such a condition. And mention of 'Myalgic encephalopathy' I assume akin to Myalgic Encephalomyelitis (ME), another mainstay topic of this blog, perhaps taps into an area that requires lots more study on the possible overlap between autism and ME/CFS (chronic fatigue syndrome) (see here). Indeed, in future posts I'll be [again] covering research on the issue of suicide in relation to ME/CFS [3] that could also be relevant to autism and ME/CFS when co-occurring, reiterating that ME/CFS is not a psychiatric or mental health diagnosis...

Onward: "These results suggest that autism diagnosis and autistic traits explain significant additional variance in suicidality beyond a range of known risk factors, and are therefore independent risk markers for suicidality." So 'autistic traits as being independent risk markers for suicidality'. This is not the first time that such peer-reviewed sentiments have been reported (see here) and probably won't be the last. The logical implications from such a finding is that a reduction in autistic traits may well impact on suicidality. This is not a sentiment that some people will find palatable, but that's the logical implication stemming from such a finding.

Finally, quite a lot has been made (on social media at least) about the issue of camouflaging (masking) and a possible connection to suicidality in relation to autism. Masking reflects the idea that some on the autism spectrum actively camouflage signs and symptoms "in order to cope in social situations." The authors report that: "Camouflaging and unmet support needs appear to be risk markers for suicidality unique to ASC [autism spectrum conditions]." I'm however slightly cautious of this at the moment when wearing my objective science hat. One has to remember that, at present, there aren't many (any?) well validated tools for objectively assessing masking in relation to autism. In this study, Cassidy and colleagues mention how: "A brief set of four questions were designed to quantify tendency to camouflage." The answers to such a small set of open questions are subject to considerable bias (particularly if the individual is active on social media and perhaps privy to all the discussions around masking on there). One also cannot discount the idea that having the fundamental ability of 'insight' to be able to mask/camouflage may itself be a risk factor for suicidality. I say this on the basis of other research talking about how a higher cognitive capacity in relation to autism seems to increase the risk of vulnerability to depression (see here) as a function of the link between depression and suicidality. Simple answers to complex questions are likely to be few and far between.

So, where next? Well, being careful not to fall into any sweeping generalisations or psychobabble explanations of suicide risk in relation to autism, it strikes me that there are a few things to think about in terms of harm reduction. Screening for something like depression and/or non-suicidal self-injury (NSSI) should be much more widespread in the context of autism. Obviously, such behaviours / diagnoses are not just 'locked in' over a lifetime, so such screening needs to be done quite regularly. I would also mention that other comorbidity seemingly over-represented when it comes to autism might also exert an important effect too (see here). Tackling 'unmet support needs' also looks to be important. I'm slightly less sure of how to go about affecting this, given that the availability of many services are seemingly at the whim of finances and resources, which continue to be in short supply in these austere times (see here). But where there's a will, there's a way. I'll also reiterate that if certain autistic traits are themselves independent risk factors for suicidality, it surely follows that moves to reduce such behaviours would impact on suicidality. Indeed, in this context, the active process of masking could be seen as a double-edged sword when it comes to suicidality and autism.

And I'm also minded to bring in some important literature where autism is talked about in the context of euthanasia and assisted suicide (see here) and what lessons could be learned from some of the accounts detailed there. It's another difficult topic to discuss but something that is becoming increasingly relevant (see here).

As always, if you need someone to talk to (or text), there are organisations available. Please use them.

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[1] Cassidy S. et al. Risk markers for suicidality in autistic adults. Mol Autism. 2018 Jul 31;9:42.

[2] Cassidy S. et al. Suicidal ideation and suicide plans or attempts in adults with Asperger's syndrome attending a specialist diagnostic clinic: a clinical cohort study. Lancet Psychiatry. 2014 Jul;1(2):142-7.

[3] Devendorf AR. et al. Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness. J Health Psychol. 2018 Jul 1:1359105318785450.

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The headline: "One in nine young people in Scotland have attempted suicide"

I have to say that I drew a sharp intake of breath when I read the media headline titling this post - "One in nine young people in Scotland have attempted suicide" - based on the findings reported by Rory O'Connor and colleagues [1]. The idea that, from a sample of some 3500 young people in Scotland, some 10% and 15% of respondents to the questions: "Have you ever made an attempt to take your life, by taking an overdose of tablets or in some other way?’ and ‘Have you ever deliberately harmed yourself in any way but not with the intention of killing yourself? (i.e. self-harm)" answered in the affirmative, seemed pretty important. Not least with the question 'why?' in mind.

OK, media headlines aside, the O'Connor findings require some dissection. The reasoning behind studying this issue was not only to look at the very complicated topic of suicide in a part of the UK (Scotland) that authors write "has a higher suicide rate than England", but also to try and understand how non-suicidal self-injury (NSSI) or non-suicidal self-harm (NSSH) presents in young adults and whether there is something important linking NSSH and suicidal thoughts and/or attempts.

The participant group was drawn from "a representative sample of young people aged 18–34 years from across Scotland" who were recruited to the Scottish Wellbeing Study. Lots of measures were completed by participants as part of the wider study initiative but we are told that "only the prevalence of NSSH and suicide attempts information is reported" in the O'Connor article on this occasion. I might also add that participants were compensated to the tune of £25 (pounds sterling) for their time and participation.

Alongside those headline findings on self-reported attempted suicide and self-harm, a few other important trends were observed. So: "More than 20% reported lifetime suicidal thoughts, 2.4% reported that they last thought about suicide in the past week and 10.4% reported they last thought about suicide in the past 12 months." Around 6% of respondents reported that they had both attempted suicide and also engaged in self-injury suggesting that professionals should "routinely enquire about history of self-injurious behaviour, especially as past behaviour is such a strong predictor of suicide." Also: "Earlier age at NSSH or suicide attempt onset was associated with more frequent lifetime NSSH and suicide attempts." And finally: "The prevalence of NSSH and suicide attempts was significantly higher among those classified as unemployed... and economically inactive... compared with those who were employed." Age, societal and environmental factors seem to play some roles too.

Then to another important set of questions: (a) why? and (b) what can be done to reduce these headline-grabbing statistics? Well, there are no easy answers to such questions I'm afraid. The authors do note that: "From a public health perspective, the unemployment and economic inactivity findings are noteworthy" and perhaps suggest that there are some modifiable variables that could influence suicidal thoughts and/or actions focused on getting people into employment and the benefits that this brings (wide-ranging benefits by all accounts). But this probably only covers one side of the issue, as discussions inevitably turn to what role psychiatric and/or behavioural comorbidity might play in such reporting (see here and see here and see here) and whether there may be a need for (a) something like enhanced screening for suicidal thoughts or other 'risks' among selected populations and/or (b) the [careful] use of 'preventative' strategies in such cases (see here and see here). I say all that accepting that diagnoses around mental health probably play an important role in suicide-related behaviours but are not necessarily a pre-requisite...

As always, there is always someone to talk to if needed...

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[1] O'Connor RC. et al. Suicide attempts and non-suicidal self-harm: national prevalence study of young adults. BJPsych Open. 2018; 4: 142-148.

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Autistic traits and risk of suicidality: ALSPAC opines...

The findings reported by Iryna Culpin and colleagues [1] observing that: "Social communication impairments are an important autistic trait in relation to suicidality" return me back to a topic that features much too frequently on this blog: suicide risk and autism.

Drawing on data from the Avon Longitudinal Study of Parents and Children (ALSPAC) initiative, that continues to provide some important insights on labels like autism (see here for example), researchers sought to answer a couple of important research questions: "1. Is an autism diagnosis and/or autistic traits associated with suicidal ideation (suicidal thoughts and plans) and suicidal behaviour (self-harm with and without suicidal intent) by age 16 years? 2. Are any of the observed associations explained by depressive symptoms in early adolescence?"

The question of whether autism or autistic traits are *associated* with suicide (ideation and/or behaviour) is something that has entered the peer-reviewed research psyche quite a bit in recent times. I've talked for example, about data from 'big data' Taiwan on this topic (see here) who concluded that: "ASD [autism spectrum disorder] was an independent risk factor of attempted suicide" [2] based on the analysis of over 5000 young people diagnosed with autism and some 22, 000 not-autism controls.

The numbers included in the Culpin study were a little less impressive - "5,031 members of the UK-based birth cohort study-the Avon Longitudinal Study of Parents and Children" - but ALSPAC does have the advantages of "long-term follow-up, the availability of data on several outcomes, as well as rich data on confounders, and longitudinal design that enables to examine mediating pathways." Indeed, as well as focusing on a diagnosis of autism, Culpin et al also had some 'rich data' on the presence of "four dichotomised ASD traits (social communication, pragmatic language, repetitive behaviour, sociability)." This enabled them to both observe any findings based on a diagnosis / label of autism or ASD and also traits pertinent to a diagnosis of autism or ASD. Issues such as self-harm and/or suicidal thoughts or plans were similarly sought from participants at age 16 years based on answers to questions such as "Have you ever hurt yourself on purpose in any way (e.g., by taking an overdose of pills or by cutting yourself?)" and "On any of the occasions when you have hurt yourself on purpose, have you ever seriously wanted to kill yourself?"

Results: as per the opening sentence, authors observed that "social communication difficulties may be important in relation to suicidality." They interpret this by suggesting that their results tally with others where "social impairments and difficulties in establishing interpersonal relationships are triggers for suicidal behaviour."

But... when it came to examining the diagnosis of autism or ASD in relation to suicidality, they reported that there was: "no evidence of an association between ASD diagnosis and any of the outcomes." They caution however that the numbers of those with a diagnosis were "very low and confidence intervals wide." I also note that data on the numbers of those with a diagnosis of ASD with self-harm with or without suicidal intent are shown as 'censored' to "prevent disclosure due to small cell counts."

Finally, it's worthwhile noting another part of the Culpin study analysis looking at a role for depressive symptoms on the observations made. We are told that "data from the Short Mood and Feelings Questionnaire (SMFQ), a 13-item instrument used to evaluate core depressive symptomatology in children aged 8 to 18 years" was also analysed. Authors report on "evidence of an indirect pathway from impaired social cognition to self-harm via depressive symptoms" but such depressive symptoms only accounted for about a third of the "total estimated association between impaired social cognition and self-harm." Enough however for them to conclude that "addressing the mental health needs of children with autism" *might* offset some risk in this area. Who would argue with that?

There are issues with the Culpin study insofar as the focus on self-report over clinical diagnosis for something like depression or depressive symptoms and "limitations in establishing suicidal intent accompanying self-harm, particularly using self-reports which could be influenced by fluctuations in mood or change over time." I will, once again, reiterate that the report of no evidence of of an association between a diagnosis of autism or ASD and suicidality is also likely to be "imprecise due to small numbers."

A final question: by tackling and hopefully influencing "impairments in social communication" alongside other interventions, is it possible that the risk of suicidality in relation to autism can be reduced? I say this bearing in mind that future studies in this area might want to take a larger view of autism (see here) on the basis that a diagnosis of autism rarely exists in a diagnostic vacuum (see here). How also, issues such as depression like various other quality-of-life-draining facets that seem to be over-represented in relation to autism (see here), may very well be a lot more 'core' over 'comorbidity' (see here) at least for some.

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[1] Culpin I. et al. Autistic Traits and Suicidal Thoughts, Plans and Self-Harm in Late Adolescence: Population-Based Cohort Study. J Am Acad Child Adolescent Psychiatry. 2018. March 14.

[2] Chen MH. et al. Risk of Suicide Attempts Among Adolescents and Young Adults With Autism Spectrum Disorder: A Nationwide Longitudinal Follow-Up Study. J Clin Psychiatry. 2017 Nov/Dec;78(9):e1174-e1179.

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ADHD and non-suicidal self-injury (NSSI)

I've covered the growing literature observing a link between a diagnosis of attention-deficit hyperactivity disorder (ADHD) and risk of unintentional injury a few times on this blog (see here and see here). The quite consistent picture emerging from that body of peer-reviewed research is that yes, a diagnosis of ADHD does seem to increase the risk of injury for whatever reason(s). Further, that pharmacotherapy utilising some of the various medicines indicated for ADHD, seems to have something of a 'reducing' effect on that elevated injury risk (see here).

Today I'm extending that ADHD-injury risk work to include the findings reported by Judit Balázs and colleagues [1] who concluded that: "ADHD symptoms are associated with an increased risk of NSSI [non-suicidal self-injury] in adolescents." Further that: "the symptoms of affective disorders and alcohol abuse/dependence psychotic symptoms" seem to be important 'mediators' of that risk of NSSI in the context of ADHD symptoms.

Based on the examination of adolescents who "were inpatients in the Vadaskert Child and Adolescent Psychiatric Hospital and Outpatient Clinic, Budapest, Hungary between 25.02.2015 and 09.05.2016", researchers reported that some 50 adolescents met the full criteria for ADHD and a further 70-odd "showed symptoms of ADHD at the subthreshold level." They employed the "Hungarian version of the modified Mini International Neuropsychiatric Interview Kid" to assess for various psychiatric symptoms, alongside the Deliberate Self-Harm Inventory (DSHI) to provide details on self-injury and some further questioning on suicidality. The aim was to investigate rates of NSSI in their cohort but also "how the symptoms of comorbid psychiatric conditions influence this [relationship], and whether there is a difference between girls and boys at this age."

Results: alongside the finding that at the very least, ADHD or ADHD symptoms are not protective against non-suicidal self-injury (NSSI), authors also observed that "people with ADHD have a higher risk than those without of developing comorbid psychiatric problems, both externalizing and internalizing ones" and "there is no direct association between the symptoms of ADHD and the prevalence of NSSI in a clinical sample of adolescents in any sex." On that last point, authors further opine that: "Comorbidities fully mediate the association between these conditions." In other words, clinicians should be screening for various psychiatric comorbidities - major depressive episode, dysthymic disorder, hypo/manic episode, psychotic disorders, substance-related dependence/abuse - and treating said comorbidities to potentially offset the risk of NSSI appearing alongside ADHD or subclinical ADHD.

In these days of ESSENCE - Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations - where the rule seems to be that various labels do not appear in some sort of diagnostic vacuum (see here for example), the Balázs findings fit well. The implication being that before grand associations are made on the basis of one variable = one condition/label/diagnosis (see here for example), one should perhaps consider a wider clinical picture. Indeed, to further extend the Balázs findings talking about NSSI, and based on the idea that autism and ADHD seem to be an important clinical combination (see here), I would perhaps encourage a greater depth of screening in future research (see here). That also might apply to the delicate issue of suicidality too (see here)...

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[1] Balázs J. et al. Attention-deficit hyperactivity disorder and nonsuicidal self-injury in a clinical sample of adolescents: the role of comorbidities and gender. BMC Psychiatry. 2018; 18:34.

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"A greater understanding of ASD-related violence risk is needed to combat stigma"

This is another one of my long posts, so please, bear with me.

The topic of violence is always an emotional one. I know that even to mention the word 'violence' in the context of any label/diagnosis/condition/group carries the risk of making some people believe that there is some sort of generalisable connection. No smoke without fire eh? And one only needs to look at another label to see how a link with violence and by inference, 'dangerousness' has left a deep and long-lasting mark (see here) that continues today. So we're stuck between a rock and hard place: to talk about something and the risks attached in doing so, or just leave it, let people make their own judgements...

I've discussed quite a few uncomfortable topics on this blog down the years in light of various peer-reviewed research publications. I'm not one for shying away from calm and proportionate discussion where science - peer-reviewed science - has some vitally important input. In that context, I continue my discussions on the topic of violence and autism (see here). By doing so, I'm not making any sweeping generalisations. I'm not making any wild claims. I don't offer any brilliant insights into this topic. I'm just following the science and keeping emotions as far away from such cold, objective science as possible.

But there is a message before I continue. A message to those who might, in light of various media headlines, make some snap judgements about some of the people in your community. The message is simple: violence, in all it's forms, is not inherent to any one group. No-one is violent because of generalisations about who they are, whether on the basis of age, race, socio-economic circumstances or anything else. There are typically reasons for violence, and in many cases they're complicated. By saying all that, I'm not trying to talk down the very real effects that violence can have on individuals, families and society in general and the strong need for justice and more importantly, prevention. Just that seemingly apparent correlations and simple answers rarely provide an accurate insight into the particular hows-and-whys of violence and violent acts...

So today I'm talking about the paper published by Jill Del Pozzo and colleagues [1] who "provide a comprehensive review of the literature bearing on the relationship between ASD [autism spectrum disorder] and violent behavior." This is a timely publication because I'm sure many people have seen the word 'autism' being used among the coverage of a quite horrendous act recently. Indeed, even Del Pozzo et al allude to other similar attention: "Over the last decade, there has been increased media attention focused on the relationship between ASD [autism spectrum disorder] and violent behavior due to a number of school shootings and high-profile criminal cases involving offenders with alleged ASD diagnoses."

Perhaps I need to mention that the word/description 'violence' covers a lot of ground. It of course covers violence against others, whether on an individual or collective basis, but importantly, also covers violence in many other forms including against oneself in the form of self-injury and/or self-abuse. Most media coverage of violence covers violence against others. But I'd wager that violence against oneself is the predominant form of violence in many circumstances minus any big headlines...

Del Pozzo et al set about providing a "comprehensive review of the literature" on autism and violence. Following their surveying of the current peer-reviewed research literature in this area, the authors concluded that whilst a diagnosis of autism is by no means protective of someone committing a violent act, there is generally more peer-reviewed scientific support for the idea that "ASD does not cause violence" over and above the sometimes negative media portrayals of the label in this context (see here). A welcome conclusion it has to be said, and one that needs to be circulated widely; but again, minus any sweeping generalisations and bearing in mind that science is all about probability not absolutes.

There are caveats to the statement that 'ASD does not cause violence' insofar as the multiple observations that autism typically does not exist in a diagnostic or social vacuum (see here), and how various factors (environment, psychiatric comorbidity, criminality) can potentially elevate the risk of violence for some people. All of this is not about passing the diagnostic buck (see here) as some people quite unceremoniously have decided to do, but needs to be mentioned; particularly in light of these days where 'autism plus' [2] is more typically the norm (see here) over and above the label of autism existing as some sort of stand-alone diagnosis. The pertinent question therefore may not necessarily be one of 'does autism cause violence?' but rather what role autism may or may not play [3] when it comes to violence, taking into account an often very complicated, very individual clinical picture. I say this also acknowledging that a diagnosis of autism is not some 'magical status' automatically reserved only for 'good people' (see here); just as any other behavioural/psychiatric label does not similarly distinguish between 'good' and 'bad' people.

As per the title of this post utilising a quote from Del Pozzo and colleagues - "A greater understanding of ASD-related violence risk is needed to combat stigma" - there is a pressing need to further understand how and why violence can/does occur for some alongside the label of autism or rather autism plus. Whether as part of the often nebulous term that is 'challenging behaviours' (see here) or in other related contexts (importantly also including that self-aggression angle), trying to answer such how/why questions can only be of benefit to all concerned. Indeed, alongside another quite sweeping generalisation made by Del Pozzo et al that: "Violence results from undetected or untreated third variables (e.g. psychosis)" and "Individuals with ASD have an elevated risk of psychosis", various lessons continue to be learned [4] (see here also) albeit stressing how complicated any relationship is likely to be [5]. As I mentioned before, easy answers are not likely to forthcoming.

Finally, I want end by again introducing the concept of 'vulnerability' in the context of autism into proceedings. I'm not specifically talking about vulnerability to various comorbidity that 'probably' influence the presentation of violence in the context of autism, but rather vulnerability in more general terms (see here). The writings of Tom Berney [6] provide some particularly insightful details on such vulnerability in relation to violent and other offending acts within the context of some autism or rather some 'autism plus'. Such vulnerability issues stress how, minus hype or sensationalism or indeed any calls for censorship in this most delicate area, investigations need to continue and sensitively continue without stigmatising and without further disadvantaging an already quite disadvantaged community...

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[1] Del Pozzo J. et al. Violent behavior in autism spectrum disorders: Who's at risk? Aggression and Violent Behavior. 2018. Jan 31.

[2] Gillberg C. & Fernell E. Autism plus versus autism pure. J Autism Dev Disord. 2014 Dec;44(12):3274-6.

[3] Allely CS. et al. Violence is Rare in Autism: When It Does Occur, Is It Sometimes Extreme? J Psychol. 2017 Jan 2;151(1):49-68.

[4] Långström N. et al. Risk factors for violent offending in autism spectrum disorder: a national study of hospitalized individuals. J Interpers Violence. 2009 Aug;24(8):1358-70.

[5] Bell V. et al. A symptom-based approach to treatment of psychosis in autism spectrum disorder in October 2017. BJPsych Open. 2018 Jan;4(1):1-4.

[6] Berney T. Asperger syndrome from childhood into adulthood. Brit Journal Psych Advances. 2044; 10: 341-351.

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Rare genetic condition manifesting as autism and its management

"We report the case of a young boy with nonverbal autism and intellectual disability, with a rare de novo 1q21.3 microdeletion."

That was the starting point of the article published by Cora Cravero and colleagues [1] (open-access available here). Researchers describe in some detail how a diagnosis of autism spectrum disorder (ASD) was made "on communication and social interaction impairments and restricted, repetitive patterns of behaviour and interests" and what followed: "The patient had early and extreme self-injurious behaviours that led to blindness, complicated by severe developmental regression."

Detailing how "comparative genomic hybridization array identified a de novo 1.4 Mb microdeletion of chromosome 1q21.3" and various associated physiological findings, the Cravero report provides some rather intriguing evidence that the sentence 'science does not know what causes autism' might not necessarily ring true for everyone (see here for other examples). As the authors note: "The 1q21.3 microdeletion seems associated with ID [intellectual disability], dysmorphic features, and early SIB [self-injurious behaviour] and can be a cause of syndromic autism."

One or two particular details are noteworthy in the Cravero findings outside of the idea that the N=1 might be an important concept in relation to the autism spectrum.

First, is the quite extreme effects that self-injurious behaviour (SIB) in the context of autism can have on a person. This child was blinded by their extreme SIB: "intense and repeated mutilations of cheekbones and eyes, culminating in a bilateral blindness at the age of 4 years by intumescent white cataract after numerous surgical complications." As I've mentioned before on this blog, SIB can in some cases lead to some very complicated adverse health outcomes (see here) that are not uncommon to the autism spectrum (see here). There is however a brighter note to add to the SIB experienced by this child as the authors noted that a range of interventions seemed to help alleviate some of the challenging behaviours linked to such actions. I note for example that naltrexone - the opiate antagonist - was utilised to "decrease the endorphin sensation seeking procured by SIB and diminish SIB." This follows something of a resurgence in interest in this medicine (see here) and is music to my own research ears (see here).

Second, is a little detail mentioned about the eating habits of this child: "a diet almost exclusively made up of dairy products." Alongside some accompanying details on how "intestinal transit was altered, with episodes of diarrhoea (false constipation), encopresis, and coprophagia" and I'll just say that this is something I've heard quite a bit down my years of autism research. Alongside the use of lactulose to aid the bowel issues and the anti-opioid effect of naltrexone (yes, the protein in dairy products does break down into opioid-like compounds), I'm wondering whether some of the research I've been involved with down the years looking at casein-free diets might also be relevant too (see here)?

Finally, I need to draw your attention to the increasingly popular idea that regression is a part of quite a few cases of autism (see here). Indeed the pattern of autism + ID particularly being over-represented when it comes to regression in the context of autism (see here) seems to be borne out by the case report detailed by Cravero et al.

It is good to hear that after "a year of hospitalization" the outcomes reported on this child were quite a bit more favourable than where he began. So: "His mood was stable, without tantrums or irritability, and he felt pleasure without crippling stereotypes. The SIB were limited to small low intensity fists against his helmet or his cheekbone, occurring from time to time." Further: "During the best of times he wandered half-days without helmet, smiling and exploring his environment using tactile gestures."

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[1] Cravero C. et al. Management of Severe Developmental Regression in an Autistic Child with a 1q21.3 Microdeletion and Self-Injurious Blindness. Case Rep Psychiatry. 2017;2017:7582780.

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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

Prevalence of self-injurious behaviors among children with autism

Just over a quarter of children diagnosed with an autism spectrum disorder (ASD) present with self-injurious behaviour (SIB).

That was the headline finding reported by Gnakub Soke and colleagues [1] who surveyed the 8000+ children "in the Autism and Developmental Disabilities Monitoring (ADDM) Network during the 2000, 2006, and 2008 surveillance years." THE ADDM network, as some people might know, is one and the same network that comes up with the [estimated] prevalence of autism in the United States (see here) and so carries quite a lot of statistical and clinical clout when it comes to data production. The actual figure for SIB was 27% when taking all the various ADDM sites into consideration but, much like the estimated prevalence stats, "with some variation between sites."

SIB is a topic that has been discussed on this blog a few times before (see here and see here for example). It's not something that generally makes for polite dinner table conversation and not something that many people would say makes for 'good PR' when it comes to the public perception of autism. Nevertheless, these and other estimates of SIB in autism (including its persistence) are one of the more pressing issues for those that present with such behaviours given not only the damage and distress that SIB can do to a person but also the effect(s) on family and loved ones too.

"Clinicians should inquire about SIB during assessments of children with ASD." I think that sentence is taken as read in light of the coincidence of autism and SIB. More than that however I think many people would like to see a lot more research into the potential hows and whys of SIB [2] and what can be done to minimise such 'challenging behaviour'. Yes, such acts may in some way be communicative for some people on the autism spectrum (i.e. pain, discomfort, etc), and if so, the use of a 'chemical cosh' is likely to have repercussions for such possible communication attempts. But where such SIB acts place someone at risk of permanent physical injury and/or increase the likelihood of extremes such as the need for corrective surgery, I don't think many people would hold back with the idea of appropriate management for such extreme behaviours.

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[1] Soke GN. et al. Brief Report: Prevalence of Self-injurious Behaviors among Children with Autism Spectrum Disorder-A Population-Based Study. J Autism Dev Disord. 2016 Aug 26.

[2] Yuan X. & Devine DP. The role of anxiety in vulnerability for self-injurious behaviour: studies in a rodent model. Behavioural Brain Research. 2016; 311: 201-209.

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Soke GN, Rosenberg SA, Hamman RF, Fingerlin T, Robinson C, Carpenter L, Giarelli E, Lee LC, Wiggins LD, Durkin MS, & DiGuiseppi C (2016). Brief Report: Prevalence of Self-injurious Behaviors among Children with Autism Spectrum Disorder-A Population-Based Study. Journal of autism and developmental disorders PMID: 27565654

The persistence of self-injury in relation to autism

Some behaviours associated with a diagnosis of autism don't make for great dinner table discussion. Self-injurious behaviours (SIBs), as exemplified by head banging, hair pulling and eye gouging must rank as some of the more distressing facets of [some] autism insofar as their potential effect on the person and also the people around them.

These and other types of behaviour commonly headed under the category of so-called 'challenging behaviours' have tended not to be too evident when it comes to the public depiction of autism it has to be said. I can appreciate why, but what this can mean is that such issues tend to get 'brushed under the carpet'. In recent times however, there does seem to be a greater willingness for research to delve into such behaviours [1].

The paper by Caroline Richards and colleagues [2] (open-access) looking at the persistence of such behaviour(s) and the potential correlates associated with their persistence is a welcome piece of research added to the research interest. Highlighting how for a small research sample of 67 children/young adults with autism over three-quarters reported SIB persisting over a 3-year period, the data provide some interesting insights into the nature of this issue and, potentially how it should be screened for and managed.

Based here in Blighty, researchers initially managed to recruit 190 participants, the data for some of whom were previously published [3]. As perhaps one might expect, the follow-up after on average 36.4 months had elapsed was not so well-populated. No mind, various findings are reported including that "the presence, topography and severity of self-injury were persistent and stable over three years" and that "individuals with self-injury were significantly more likely to be non-verbal than those who did not engage in self-injury." Further: "individuals with self-injury were significantly more likely to be less able and non-verbal and to show higher levels of stereotyped behaviour, compulsive behaviour, insistence on sameness, overactivity, impulsivity, repetitive behaviour and impairments in social interaction."

There is quite a bit more to do on this topic including facing up to issues around the small (eventual) participant size and the reliance on 'a questionnaire pack' as the chosen method of assessment. The authors also talk quite a bit about how some of the behaviours observed in connection with self-injury - impaired behavioural inhibition - might overlap with other diagnoses such as attention-deficit hyperactivity disorder (ADHD) but as far as I can see, they did not directly screen for ADHD outside of the use of something called The Activity Questionnaire (TAQ). I might also have liked to have seen a little more information about how parents/professionals had 'tackled' SIB in this cohort and what effect that might have had on results. Investigations remain.

Having said all that, the insights provided by the Richards article are important and provide plenty of food for thought when it comes to SIB and autism. Without trying to generalise SIB to all autism nor to come across as portraying too negative an image of what autism can mean to someone, recognition and management (dare I say treatment) of such behaviours when present should really be a priority [4].

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[1] Maddox BB. et al. Untended wounds: Non-suicidal self-injury in adults with autism spectrum disorder. Autism. 2016 May 12. pii: 1362361316644731.

[2] Richards C. et al. Persistence of self-injurious behaviour in autism spectrum disorder over 3 years: a prospective cohort study of risk markers. Journal of Neurodevelopmental Disorders 2016; 8: 21.

[3] Richards C. et al. Self-injurious behaviour in individuals with autism spectrum disorder and intellectual disability. J Intellect Disabil Res. 2012 May;56(5):476-89.

[4] Lee Y-H. et al. Cataract secondary to self-inflicted blunt trauma in children with autism spectrum disorder. Journal of American Association for Pediatric Ophthalmology and Strabismus. 2016. May 17.

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Richards, C., Moss, J., Nelson, L., & Oliver, C. (2016). Persistence of self-injurious behaviour in autism spectrum disorder over 3 years: a prospective cohort study of risk markers Journal of Neurodevelopmental Disorders, 8 (1) DOI: 10.1186/s11689-016-9153-x

Autism and the [different] expression of pain

Two papers provide some brief discussion today. The first by Janice Goldschmidt [1] titled: 'What Happened to Paul? Manifestation of Abnormal Pain Response for Individuals With Autism Spectrum Disorder' provides an account of a young man with autism who during a "pilot nutrition intervention designed to teach cooking skills to young adults with autism spectrum disorder (ASD)" fell quite seriously. We are told that: "After his accident, which resulted in broken and dislocated bones in his ankle, his demeanor was dramatically altered, program gains were lost, and staff noted the appearance of many new challenging behaviors."

The second paper by Andrea Courtemanche and colleagues [2] continues a theme looking to "measure expressions of pain among young children being evaluated for autism and other neurodevelopmental disabilities." Authors concluded that their results among other things "support that individuals with self-injury may have enhanced expressions of pain."

The commonality in these papers, aside from looking at pain, is the idea that autism might 'lead' to a "blunted pain response" is not necessarily one that fits uniformly across the autism spectrum. To quote: "The consequence is not a reduction in pain sensation, but a different expression of pain, determined by that individual's particular communicative, cognitive, or physiological challenges." Of course science already knows much of what is being said here as I've covered topics such as the fact that yes, people on the autism spectrum do get headaches (see here) and how pain may be quite a significant predictor of things like sleeping problems in relation to autism (see here). I might add that some of the source of that pain could also be linked to some of the over-represented comorbidity that can/does follow a diagnosis of autism (see here) (and hence should be perfectly treatable).

The discussions about self-injury being potentially linked to the expression of pain also ties into related topics covered on this blog insofar as such 'challenging behaviours' normally having some reasoning behind them (see here). Self-injurious behaviour (SIB) can often be a harrowing thing to see (no parent or sibling wants to see a loved one hurting themselves) but with the right investigative approach can sometimes provide important information about a person and their wants and wishes (see here). I don't say that to somehow encourage SIB nor to lessen the impact that biology can have on its expression; merely that some other person perspective-taking should accompany analysis of any behaviours that challenge as and when they present (before reaching for the anti-challenging behaviour meds) as well as making moves towards breaking down things like communication barriers (see here) that potentially contribute to such behavioural manifestations.

Pain is very much part of the human experience. Whilst efforts should indeed continue to ensure that everyone lives a life as pain-free as possible, the importance of short-term pain or rather the importance of short-term pain expression should not be under-estimated. Likewise, sweeping generalisations about altered pain sensitivity applying across the autism spectrum need not necessarily apply. I'm also happy to report that pain is a topic being discussed at IMFAR today...

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[1] Goldschmidt J. What Happened to Paul? Manifestation of Abnormal Pain Response for Individuals With Autism Spectrum Disorder. Qual Health Res. 2016 Apr 26. pii: 1049732316644415.

[2] Courtemanche AB. et al. The Relationship Between Pain, Self-Injury, and Other Problem Behaviors in Young Children With Autism and Other Developmental Disabilities. Am J Intellect Dev Disabil. 2016 May;121(3):194-203.

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Goldschmidt J (2016). What Happened to Paul? Manifestation of Abnormal Pain Response for Individuals With Autism Spectrum Disorder. Qualitative health research PMID: 27117957




Courtemanche AB, Black WR, & Reese RM (2016). The Relationship Between Pain, Self-Injury, and Other Problem Behaviors in Young Children With Autism and Other Developmental Disabilities. American journal on intellectual and developmental disabilities, 121 (3), 194-203 PMID: 27119211