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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Estimated autism prevalence in Northern Ireland: 3.3% for 2018-2019

The BBC news headline reading "Autistic children in NI schools trebles in a decade" provides the blogging fodder today.

NI refers to Northern Ireland, and the news report relates to the publication of further findings from the Department of Health in NI [1] on the topic of autism prevalence among school-aged children.

I've covered the NI 'autism in school children' figures for quite a few years on this blog (see here and see here). The stats have gone from 2.3% in 2015/2016 to 2.5% in 2016/2017 to 2.9% in 2017/2018 to the most recent figures of 3.3% in 2018/2019. The report and news coverage focus on how that recent 3.3% figure compared with 1.2% back in 2008/2009. That's quite a shift in the space of just a decade.

A few details are worthy of further mention. First, Northern Ireland seems to be taking a bit of a lead in collecting information about rates of autism in school-aged children (see here). Indeed, many of the 'home countries' making up the United Kingdom (UK) are starting to ask the questions that England, unfortunately, is seemingly not yet asking (see here).

Second, we are told that: "The increase in prevalence of children with autism can be attributed to an annual average increase in the number of children identified with autism of 12% between 2009/10 and 2018/19, against a background of a relatively static school population." This means that the rates of autism in school-aged children are not simply increasing because the school population as a whole is increasing. Indeed, with other not-so-long-ago chatter about long waiting lists for assessment in places like Northern Ireland (see here), one could argue that the current figures are an under-estimate.

Third, with regards to the sex ratio (boys:girls), the 2018/2019 figures suggest that "5.1% of males were identified with autism compared to 1.5% of females." The same figures a decade ago (2008/2009) were 1.9% and 0.4% respectively. I don't however necessarily agree with the: "Autism could therefore be considered to be an extreme of the normal male profile" sentiments expressed by the author to account for this difference but...

Fourth, the rate of the increase across the decade (2008/2009 compared with 2018/2019) was present in every school year. The author focuses in on the fact that nearly 4% of those in Year 6 (the end of primary school) were "identified with autism". He also mentions that most identification of autism in school is occurring when children are aged between 5 and 10 years old. Primary school, it seems, is an important time for the identification of autism.

Fifth: something approaching grading a child for autism 'severity' is also discussed. I know 'severity' is still a contentious issue (someone actually suggested 'severe autism' should be replaced by 'profound autism' which sounds rather sensible). Special educational need (SEN) assessment is a process via which a child's needs are graded. More details about this process applied to Northern Ireland can be found here. SEN stage 4 and SEN stage 5 indicate that a child requires support from school but also that "the education authority shares responsibility with the school." Nearly two-thirds of children identified with autism were at SEN stage 5. This was however down from previous years with the main 'growth' being among those who were gauged at SEN stage 2 and stage 3. The authors caution that such figures are only a snapshot (children can move up and down the SEN stages for example).

Whichever way you cut it, the recent figures out of Northern Ireland show the increasing trend for autism in school-aged children (see here). We can add such figures to those which have recently come out of the United States (see here and see here), Canada (see here) and various other parts of the world. We can quibble about the old 'better awareness' arguments and even diagnostic switching as being primary causes of the increase. I personally do not believe that such explanations even come close to the final reasons for the increase in cases that have been noted and continue to be seen (see here). What I do know is that further finance and resources are required to meet the often complex needs of these children and young adults to allow them to reach their potential.

And minus any emotive language (i.e. tsunami), let's remember that children turn to adults, and many of these children will require on-going help and support into their later years. The question is: are we prepared?

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[1] Waugh I. The Prevalence of Autism (including Asperger Syndrome) in School Age Children in Northern Ireland 2019. Northern Ireland Department of Health. 2019. May 10.

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1 in 10 kids: the estimated prevalence of ADHD in the United States in 2016

Credit: Xu et al (2018) JAMA Network Open

"In a nationally representative population, we estimated that the prevalence of diagnosed ADHD [attention-deficit hyperactivity disorder] among US [United States] children and adolescents was 10.2% in 2016."

So said the findings published by Guifeng Xu and colleagues [1] who relied on data derived from the National Health Interview Survey (NHIS) in the United States over the course of two decades (1997-2016). As per an accompanying editorial [2] with the smart title "Paying Attention to Attention-Deficit/Hyperactivity Disorder", the Xu findings "fills an important need" insofar as their plotting a significant increase in the estimated prevalence rate of ADHD. The stats: "the estimated prevalence of ADHD significantly increased during the past 20 years—from 6.1% in 1997-1998 to 10.2% in 2015-2016." The year-on-year percentage figures considered by Xu et al showed a rise almost every year when it came to the [estimated] ADHD prevalence. Such figures are quite distinct from other (point) estimates in other parts of the world (see here).

Of course there are upsides and downsides to the authors' reliance on the NHIS dataset. So: the reliance on "parental reports about psychopathology rather than actual standardized assessments administered face-to-face with parents and/or children by trained evaluators" is one of the main limitations talked about across many different labels (see here). This has to be balanced with the large sample size included in the NHIS initiative and the "high response rate (child response rate of 85.6%-93.3%)." Personally I'm not inclined to believe that significant numbers of parents would provide 'false' answers to questions like: “Has a doctor or health professional ever told you that [the sample child] had attention-deficit/hyperactivity disorder (ADHD) or attention-deficit disorder (ADD)?” or “Does [the sample child] currently have attention-deficit/hyperactivity disorder (ADHD) or attention-deficit disorder (ADD)?” but ho-hum.

Then to the million dollar question: why has the estimated ADHD prevalence rate increased so dramatically across a relatively short period of time? Well, some well-worn explanations also seen with regards to the autism prevalence statistics (see here) have been banded around. So: "Nonetiologic factors may partly explain the apparent increase in the prevalence of diagnosed ADHD in this study" such as physician "sensitivity" to a diagnosis of ADHD, alongside the changes in ADHD diagnostic criteria already talked about in the peer-reviewed domain (see here). The issue of screening and diagnosis among non-white groups and their accessibility to said screening/diagnostic services is also discussed (something else that cropped up with the recent autism stats in mind too). And since I've just mentioned autism, it's also likely that the increasing recognition that ADHD is part of the clinical picture for quite a few on the autism spectrum (see here) probably contributes to the increase too.

But then there is the idea that the increase may also be - in part - reflective of a real increase too (see here). There are lots of possible candidates that may be contributory (see here and see here for examples) covering a multitude of genetic and non-genetic factors appearing during the nine months that makes us and beyond. As with any other developmental label and the reason(s) it comes about, there are going to be a multitude of potentially important factors to consider that may be quite individual. One thing is evident however, for whatever reason(s), the numbers are only heading in one direction...

A final question: what can be done to improve the life outcomes of those diagnosed with ADHD in ever-increasing numbers? I mention that question in the context that ADHD seems to elevate the risk of various adverse life events occurring (see here and see here and see here for examples) as well as being a potential 'driver' for other psychopathology appearing too (see here). In this context, we are already beginning to appreciate the benefits of certain types of intervention (see here) as well as the potential value of various other intervention options that are not yet considered 'mainstream' (see here and see here for examples). Further research is required to understand the societal and biological factors linked to a diagnosis of ADHD, and whether further advances in intervention and management can be made as a result, and onward lives (hopefully) enhanced...

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[1] Xu G. et al. Twenty-Year Trends in Diagnosed Attention-Deficit/Hyperactivity Disorder Among US Children and Adolescents, 1997-2016. JAMA Network Open. 2018; 1: e181471.

[2] Dickstein DP. Paying Attention to Attention-Deficit/Hyperactivity Disorder. JAMA Newtork Open. 2018; 1: e181504.

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Estimated autism prevalence in Northern Ireland: 2.9% for 2017-2018

Consider this post discussing the publication: "The Prevalence of Autism (including Aspergers Syndrome) in School age Children in Northern Ireland 2018" an extension of other musings on previous figures to come out of Northern Ireland (see here).

On my last blogging occasion on this topic, the report (see here) covered the period 2015/2016 and detailed an estimated prevalence rate of autism spectrum disorder ("including Asperger syndrome") in Northern Ireland of 2.3%. I actually missed a report that covered the period 2016/2017 (see here) that detailed an estimated rate of 2.5%. This latest report covering 2017/2018 sets the rate at 2.9%. You can perhaps see the direction of the trend, mirroring other population estimated data (see here)...

The report(s) are open-access for anyone to see, but I'm going to pick out a few choice snippets of information.

So: the last blogging time I talked about the Northern Ireland (NI) report, I mentioned that the [estimated] prevalence rate for boys was approaching 4% based on those 2015/2016 figures. Well, that's been well and truly surpassed and is now heading towards 5% of boys in NI "identified with autism." How are they identified I hear you ask? Well, school data is the answer, "from the ‘Northern Ireland School Census’" where schools are legally obliged by the Department of Education in NI to provide information about registered pupils. Further: "The data only captures those children identified with autism, at any time there may be additional children who may be progressing through the full assessment process and it is possible that a number of children may be identified as having autism at a later date." That last point is important in the context that NI has a bit of a history of 'long-waiting lists' for autism assessments (see here). Oh, I should also mention that the National Health Service (NHS) functions in Northern Ireland just as it does in other parts of the United Kingdom (UK) meaning that healthcare (including autism assessment and diagnosis) is free at the point of need. This does not mean that things are going to be 'fast or rapid' temporally, but does mean that people don't have to typically pay extra for such clinical services.

Next: the 4:1 male:female ratio for diagnosis seems to be holding true (as it did in the latest CDC report on 'estimated' autism prevalence in the United States). I know that quite a few people talk about this ratio figure being 'inaccurate' in view of how autism may/may not present slightly 'differently' in females (see here for example), but, at the moment at least, that's what the statistics are telling us. One thing I perhaps am slightly cautious about in the latest report with regards to the sex/gender ratio thing is the phrase: "Autism could therefore be considered to be an extreme of the normal male profile." Hmm...

Also: autism prevalence by school year shows some interesting patterns. Take a look at the screen grab I've added observing that 3.4% of children in Year 9 were "identified with autism." Just in case you're not up to speed with what Year 9 translates as in age terms, have a look at this link which covers England. I think things are slightly different in NI (see here) but generally speaking, Year 9 covers somewhere between 12-14 years of age.

Finally, something else potentially quite important: "The Northern Ireland urban population has a statistically significant higher prevalence rate than the rural population." Note those words 'statistically significant', inferring that chance alone, is probably not the driver of such disparity. It's been a while since I've blogged about 'urban vs. rural' in the context of autism (see here) and I'm sure there are 101 different explanations for the mismatch. Combined however with some other observations on a possible influence of deprivation and poverty on the recent figures ("In 2017/18, the rate of autism in the most deprived MDM [Multiple Deprivation Measure] decile was 31% higher than the Northern Ireland average") one could argue that any explanation is going to be multi-factorial.

I look at these most recent figures and cannot help but think that 'increased awareness' and/or other 'artificial' explanations are (yet again) unable to entirely account for the sorts of increase in diagnosed autism being noted (see here). Were schools and other professionals 'so bad at recognising and/or recording autism' just a few years ago? No, they weren't. And to infer they were is bit a slur on the professionalism of many teachers and other associated professionals, many of whom have seen literally generations of schoolchildren pass through their educational doors.

There's also another important question to attend to on the basis of the recent figures: are the resources currently and in the future, in place to cope with the rising demands on things like education, health and social care following the increase in the numbers of children being diagnosed with autism? I say this in the context that if there are already insufficient resources to cope with the numbers requiring assessment for autism (assessments that are typically not inexpensive [1]), how can we hope that there will be sufficient resources in place over a lifetime of potential need?

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[1] Galliver M. et al. Cost of assessing a child for possible autism spectrum disorder? An observational study of current practice in child development centres in the UK. BMJ Paediatr Open. 2017 Nov 30;1(1):e000052.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Analysing police involvement in the context of autism

"About 1 in 6 people with autism interacted with police over 18 months" went one of the media headlines covering the study published by Ami Tint and colleagues [1] looking at the hows-and-whys of police involvement in a cohort of nearly 300 young people and adults diagnosed with an autism spectrum disorder (ASD).

Researchers observed that some 16% of their cohort had some contact with law enforcement agencies but only a very small proportion actually resulted in any criminal charges being brought. Perhaps reassuringly, and despite 'aggressive behaviours' being cited as "the primary concern necessitating police involvement", most interactions between person and law enforcement were not especially adverse or particularly unpleasant for those on the spectrum. To quote: "Most parents reported being satisfied to very satisfied with their children’s police encounters."

But that's not to say that such encounters ended well for everyone, as talk about 1 in 5 police interactions involving physical restraint are also detailed and highlight the need for further research in this area. I might also add that symptom severity (I assume also referring to the presence of learning or intellectual disability alongside autism) was not a great indicator of police interaction or not according to the study.

Trawling through the quite small peer-reviewed research base in this area, there are some interesting points raised when it comes to awareness and training of police and other first responders [2] in respect of autism. Research here in Blighty has similarly highlighted gaps in police training [3] that may have been contributory to less positive satisfaction ratings when it came to interaction with people with autism. I draw back however from blanket blaming police for such statistics; they often have a very difficult job to do already, irrespective of whether diagnostic labels or other factor(s) are part and parcel of the situation(s) they are faced with.

So aside from greater training for law enforcement agencies and other first responders, what can be done to ensure that interactions with those on the autism spectrum are more positive? Some people have talked about setting up registries to guide police and related services where autism might be a factor in encounters. I can see the logic in such discussions, particularly in the context of another important issue to the autism spectrum - wandering or elopement - and ensuring that police have important knowledge about such an issue (see here). But with such registries come risks; risks of stigmatisation and also to personal liberties too. Some of the same issues relevant to the use of disclosure cards and autism come to the forefront (see here).

Perhaps a better arrangement would be a greater focus on community policing for example, where community Bobbies know their neighbourhood and it's residents and are able to apply that local knowledge as and when required. Appreciating that in these days of continued austerity, community policing numbers have suffered, perhaps a move back to neighbourhood policing is an important way of making police contact with those on the autism spectrum and no doubt various other groups that little more easier for all concerned?

Music to close, and the Beastie Boys meet Sesame Street?

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[1] Tint A. et al. Correlates of Police Involvement Among Adolescents and Adults with Autism Spectrum Disorder. J Autism Dev Disord. 2017. June 13.

[2] Kelly E. & Hassett-Walker C. The training of New Jersey emergency service first responders in autism awareness. Police Pract Res. 2016;17(6):543-554.

[3] Crane L. et al. Experiences of Autism Spectrum Disorder and Policing in England and Wales: Surveying Police and the Autism Community. J Autism Dev Disord. 2016 Jun;46(6):2028-41.

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Autism awareness among the young is actually quite good

The message of 'increasing awareness of autism' is still a strong one in modern times despite the label of autism officially entering medical texts some 80+ years ago. We have a World Autism Awareness Week and a World Autism Awareness Day and lots more in-between to raise awareness of autism and what the label [differentially] means to many, many people.

The findings reported by Karola Dillenburger and colleagues [1] seem to suggest that, particularly among children and young adults, the autism awareness message is getting through as they observed: "Children and young people have good levels of awareness and knowledge about autism and reported positive attitudes towards peers with autism." Even further: "A higher than expected number of children and young people self-reported being on the autism spectrum."

Based on analysis of "two large-scale surveys: the Kids Life and Times survey for 11-year olds and the Young Life and Times survey for 16-year olds" yielding some 3300 children and young adults, researchers posed various questions including those pertinent to autism awareness. The results suggested that some 80% of teenagers had some knowledge about autism compared with about 50% of younger children. Most participants held positive attitudes towards autism including recognition that bullying is an issue that some on the autism spectrum are particularly at risk of. Further: "Self-reported prevalence of autism was 3.1% for teenagers and 2.7% for the younger children." That last point was based on the study population being based in Northern Ireland (which interestingly, has recently reported a rather large upswing in the number of formally-diagnosed cases of autism too).

These are rather positive results insofar as the recognition of autism and indeed, how common it is in modern times. It is perhaps not unexpected that some of these authors have some research form in this area [2]. The authors frame the result in terms of boding well for "peer-mediated support strategies for inclusive education" but I think they go much further than that. Assuming that awareness covers the entire spectrum of autism (see here) and not just a part/branch of it, I'd like to think these findings go some way to supporting efforts to 'make autism more visible' and onward, ensuring that the wants and needs of those on the spectrum are more readily expressed and addressed. Media and culture probably has a lot to do with such findings (see here for example) but the fact that many classrooms and schools do now cater for students on the autism spectrum no doubt played an important role in these findings.

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[1] Dillenburger K. et al. Autism awareness in children and young people: surveys of two populations. J Intellect Disabil Res. 2017 Jun 7.

[2] Dillenburger K. et al. Creating an Inclusive Society… How Close are We in Relation to Autism Spectrum Disorder? A General Population Survey. J Appl Res Intellect Disabil. 2015 Jul;28(4):330-40.

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Estimated autism prevalence in Northern Ireland: 2.3% for 2015-2016

I'm blogging on a Sunday again but for a very good reason: The prevalence of autism (including Asperger’s Syndrome) in school age children in Northern Ireland 2016. The main report is here and includes that quite important graphic accompanying this post.

The press release summarises the important points including the observation that "including Asperger syndrome" the estimated prevalence of autism among school-aged children in Northern Ireland (NI) "has increased by 1.1 percentage points from 1.2% in 2008/09 to 2.3% in 2015/16." Indeed, the estimated autism prevalence rate for boys in 2015-2016 is approaching 4%.

When looking at autism rates across the (school) year groups, we are told that: "Prevalence across all school years was higher during 2015/16 compared with 2008/09." Further: "Looking at Years 1 – 4 (5 – 8 year olds) in 2015/16 there is a steady rise in the prevalence rate of autism. These Year Groups also had the largest percentage increase in the numbers between 2008/09 and 2015/16. This indicates that most identification of autism is occurring when children are aged between 5 and 8 years old."

The question of urban vs. rural rates of autism also showed some interesting trends: "[a] decrease in the
year on year growth of the number of children identified with autism in the rural population
from 13% in 2010/11 to 4% in 2015/16. In comparison the urban autistic population has
increased at an average of 11% each year over the same time period."

What's missing from this data? Well, I'd like to have seen something written about the various comorbidities that seem to be over-represented when a diagnosis of autism is made such as learning disability and the rising star that is attention-deficit hyperactivity disorder (ADHD). The data also says relatively little about how many children are still waiting to be diagnosed in NI as per some media reports on "thousands". I would also suggest that other parts of the UK could learn from NI in terms of data on their [estimated] autism prevalence rates in similar populations.

The bottom line: [estimated] autism prevalence rates are still increasing in many parts of the world for whatever reason. We can argue all day about the factors pertinent to the increase and whether the old 'better awareness' explanation really cuts the mustard these days. The reality however is that more money, support and services need to be pumped into the various educational and health care systems so that potentials can be reached and inequalities are minimised.

Joint attention interventions for children with autism (mostly) work

Today (April 2nd) is World Autism Awareness Day. The theme this year is on inclusion and as the United Nations note: "Mainstreaming disability" insofar as recognising that: "Autism and other forms of disability are part of the human experience that contributes to human diversity." A noble cause indeed; not forgetting that for many on the autism spectrum, long-term outcome remains poor (see here) and awareness about human diversity really needs to go hand-in-hand with real action to change prospects and truly bring equality to the ENTIRE autism spectrum. Indeed, 'life-changing' is a word that should spring to mind...

Today I'd like to bring your attention to the findings reported by Kimberly Murza and colleagues [1] which perhaps go some way towards illustrating how relatively simple early intervention can bring about quite big gains onwards to potentially improving future prospects for those on the autism spectrum. The topic of the "systematic review and meta-analysis" carried out by Murza et al was joint attention - whereby two people, often a child and an adult, use various strategies to share attention of an object or event of some interest. Joint attention with autism in mind, has been of some interest for quite a few years.

Looking at 15 "randomized experimental studies" where various types of interventions were used to improve joint attention, researchers concluded that there was quite a bit of support "for explicit joint attention interventions for young children with ASD [autism spectrum disorder]." Yes, there is more to do in terms of "which children with ASD respond to which type of intervention" but work in other areas on best- and non-responders should teach us a few lessons about how to go about doing this.

There are a multitude of options when it comes to intervening in relation to joint attention, many of which are covered in a recent publication by the group Treating Autism (see here). JASPER (Joint Attention Symbolic Play Engagement Regulation) seems to be making quite a few scientific waves recently [2] but there are others; this bearing in mind the need to improve the quality of trials looking at such behaviours (indeed reviews are only as good as the trials included) and the understanding that behavioural intervention often does little to solve the more 'somatic ' comorbidity that can and does also impact on autism (see here).

I might also add that given the depressing news that not much has changed over the past decade insofar as age at diagnosis here in the UK [3], early intervention including that targeting joint attention does not necessarily have to wait until a diagnosis is formally received...

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[1] Murza KA. et al. Joint attention interventions for children with autism spectrum disorder: a systematic review and meta-analysis. Int J Lang Commun Disord. 2016 Mar 8.

[2] Goods KS. et al. Preschool based JASPER intervention in minimally verbal children with autism: pilot RCT. J Autism Dev Disord. 2013 May;43(5):1050-6.

[3] Brett D. et al. Factors Affecting Age at ASD Diagnosis in UK: No Evidence that Diagnosis Age has Decreased Between 2004 and 2014. Journal of Autism and Developmental Disorders. 2016. March 31.

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Murza KA, Schwartz JB, Hahs-Vaughn DL, & Nye C (2016). Joint attention interventions for children with autism spectrum disorder: a systematic review and meta-analysis. International journal of language & communication disorders / Royal College of Speech & Language Therapists PMID: 26952136

Healthcare experiences and autism

In today's brief post I want to highlight the important findings reported by Christina Nicolaidis and colleagues [1] who suggested that quite a bit more could be done to improve the success of "healthcare interactions" when it comes to the autism spectrum.

Based on the experiences of 39 adults with autism and "16 people who had experience supporting autistic adults in healthcare settings" researchers came up with a few "patient- and provider-level factors" that might impact on said healthcare interactions and thus the quality of service received by this group. Quite small changes such as improving healthcare provider's knowledge of autism - specifically adult autism - including a realisation that factors such as "verbal communication skills, sensory sensitivities, [and] challenges with body awareness" might impact on the quality of healthcare received are detailed. The idea that 'if you've met one person with autism, you've met one person with autism' might also be a useful phrase for healthcare providers to keep in mind given the significant heterogeneity and heightened risk of comorbidity normally attached to the 'autisms' (plural) label.

I've always been rather interested in the disparities in healthcare quality and provision attached to behavioural and/or psychiatric labels derived from books such as ICD and DSM. Having previously covered some of the extremes of "catastrophic illnesses [that] were misdiagnosed due, at least partially, to their autism" (see here) on this blog, I have a flavour for just how bad things can get when healthcare provider knowledge of autism is poor and phrases like 'it's just part of their autism' are used willy-nilly.

"Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination." I don't think many people would disagree with the conclusions from Nicolaidis et al although the precise ways and means that such changes can be practically made still requires some flesh on the bones. As per another article from this research group [2] "the recognition of associated conditions" potentially comorbid to a diagnosis on the autism spectrum might also help healthcare providers plan for what they might expect, bearing in mind the considerable number of conditions/labels that might follow such a diagnosis (see here) and the idea that a label of autism is seemingly protective of nothing in healthcare and other terms [3]. But let's start with the simple things...

Music: The White Stripes - Fell In Love With A Girl (video pre-Lego movie). And assuming you are 'falling in love with a girl [or boy]' you might want to see how she/he might see you with the new Microsoft 'How old do I look' tool. After analysing a few mugshots of mine I'm not afraid to say that I might be visiting Boots the Chemists quite soon...

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[1] Nicolaidis C. et al. “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism. 2015. 16 April.

[2] Nicolaidis C. et al. Primary care for adults on the autism spectrum. Med Clin North Am. 2014 Sep;98(5):1169-91.

[3] Croen LA. et al. The health status of adults on the autism spectrum. Autism. 2015 Apr 24. pii: 1362361315577517.

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Nicolaidis, C., Raymaker, D., Ashkenazy, E., McDonald, K., Dern, S., Baggs, A., Kapp, S., Weiner, M., & Boisclair, W. (2015). "Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum Autism DOI: 10.1177/1362361315576221

Risk of cancer associated with autism: small but present

Whilst understanding the power that headlines can have, alongside the way that statistics can sometimes mislead and/or be misrepresented, I don't want to shy away from the findings presented by Huey-Ling Chiang and colleagues [1] reporting that: "patients with autistic disorder have an increased risk of cancer."

Curiosity often leads to trouble.

Based yet again on data derived from the fantastic resource that is the Taiwan National Health Insurance database (see here for some other research examples taken from this dataset), authors looked at the medical insurance records of over 8000 young people diagnosed with an autism spectrum disorder (ASD) living in Taiwan. They found something of an excess risk for various groups and various cancers although only actually recording that: "cancer occurred in 20 individuals with autism". I used the word 'only' in that last sentence to demonstrate how rare a cancer diagnosis was to the autism group as a whole; realising however that for those 20 people, receipt of such a diagnosis probably carried all the emotions for them and their families that one might expect following such news.

The Chiang findings reported in particular an increased cancer risk in relation to males over females and that: "The number of cancers of genitourinary system was significantly in excess of the expected number... and increased risk was found in ovarian cancer." What these findings suggest to me is that awareness and screening for cancer should perhaps be more commonplace in various discussions with autism in mind, particularly in light of how receipt of a diagnosis of ASD seems to offer very little protection against various other comorbidity being potentially diagnosed (see here) and where delays in diagnosis of comorbid conditions can potentially lead. Indeed, other research crossing into some cases of autism concluded something similar [2] when it came to cancer screening access.

Insofar as the other literature on this topic, I do want to go through some additional studies. I am shying away from talking too much about the various research which has for example, implicated some genetic issues with an individual autism diagnosis in mind that have also crossed over into cancer research too [3]. Yes, such studies might be important, but genes and cancer is still a very, very complicated area [4] as indeed, is the current collected literature on genes and autism (see here).

Autism and cancer has previously received a rather mixed review when it comes to any sort of correlation/relationship. The paper from Blatt and colleagues [5] reviewing the records of cases of paediatric cancer for signs of autism concluded that there was not a "high concordance" between the two diagnoses. That being said, their slightly lower participant numbers (N=702) than that included in the Chiang study together with the focus on autism being present in those already diagnosed with various cancers could be seen as study/methodological differences.

A few case reports can also be found in the research literature in this area. The case report from Lisa Radcliff [6] provides an interesting account of breast cancer diagnosis and treatment for a woman diagnosed with autism. Detailing a slightly older age group than the Chiang paper included, the Radcliff paper covered various issues - including legal and ethical - associated with the diagnosis and treatment of cancer also taking into account how autism can manifest and to some extent, complicate things. There are other similar report examples about cancer and autism in the peer-reviewed literature [7] I might add.

The findings reported by Kao and colleagues [8] (open-access) suggesting that "there may be an association between autism and specific forms of cancer" is also worthwhile mentioning in this post. Granted, the authors were looking more generally at 'correlating' autism prevalence and "the Incidence of Specific Female and Male Cancers" for possible shared risk factors, so perhaps again slightly different from the Chiang paper. Their findings however that "the cumulative exposure to estrogen from endogenous and external sources is an established risk factor for both breast... and uterine... cancer, the two cancers that appear to be most consistently correlated with autism" is noteworthy and perhaps ties into some other autism research (see here).

Just before I let this topic go, I do want to pass some comment on the [limited] research asserting that a familial history of certain cancers might show more than a passing relationship to at least some cases of autism. I read something about this quite recently and some, it has to be said, rather disparaging comments about the possibility of any overlap. Without trying to make mountains out of molehills, the paper by Erin Ingudomnukul and colleagues [9] represents one of the primary sources of peer-reviewed evidence suggestive of a possible link between certain types of cancer being present in both women with autism and their first degree relatives. To quote: "Compared to controls, significantly more mothers of ASC [autism spectrum condition] children reported (a) severe acne, (b) breast and uterine cancers, tumors, or growths, and (c) family history of ovarian and uterine cancers, tumors, or growths." This perhaps complements some of the more anecdotal data that I've come across down the years but very much implies that a lot more work needs to be done to confirm or refute such findings.

I want to end this post with a reiteration of the relative rarity of cancer occurring when a diagnosis of autism is received despite the headline of an increased risk present in the Chiang paper. I say this not to downplay the fact that autism is seemingly protective of nothing when it comes to other comorbidity, but merely not to sensationalise this area or add any further worry to those with autism or their families.

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[1] Chiang H-L. et al. Risk of Cancer in Children, Adolescents, and Young Adults with Autistic Disorder. J Pediatrics. 2014. 18 November.

[2] Osborn DP. et al. Access to cancer screening in people with learning disabilities in the UK: cohort study in the health improvement network, a primary care research database. PLoS One. 2012;7(8):e43841.

[3] Crespi B. Autism and cancer risk. Autism Res. 2011 Aug;4(4):302-10.

[4] Dawson MA. & Kouzarides T. Cancer epigenetics: from mechanism to therapy. Cell. 2012 Jul 6;150(1):12-27.

[5] Blatt J. et al. Autism in children and adolescents with cancer. Pediatr Blood Cancer. 2010 Jan;54(1):144-7.

[6] Radcliff L. Breast cancer and autism. J Adv Pract Oncol. 2013 Mar;4(2):113-7.

[7] Kim HS. et al. Squamous cell carcinoma of the lung in an autistic child who has never smoked. J Pediatr Hematol Oncol. 2011 Jul;33(5):e216-9.

[8] Kao HT. et al. The correlation between rates of cancer and autism: an exploratory ecological investigation. PLoS One. 2010 Feb 23;5(2):e9372.

[9] Ingudomnukul E. et al. Elevated rates of testosterone-related disorders in women with autism spectrum conditions. Horm Behav. 2007 May;51(5):597-604.

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Chiang, H., Liu, C., Hu, Y., Chen, S., Hu, L., Shen, C., Yeh, C., Chen, T., & Gau, S. (2014). Risk of Cancer in Children, Adolescents, and Young Adults with Autistic Disorder The Journal of Pediatrics DOI: 10.1016/j.jpeds.2014.10.029

Diagnosing autism late: after psychosis

The case report from Marly Simoncini and colleagues [1] (open-access) is the topic of today's post. Describing the case of Mr. A, a young man who attempted suicide during a psychotic episode, the paper tracks the developmental history and diagnostic evaluation of this person culminating in a diagnosis of autism spectrum disorder (ASD) "that had been completely overlooked".

The best thing we can do is go on with our daily routine

The paper is open-access and I would encourage readers to take some time to look through the narrative. Not only are some of the more commonly cited features of autism in childhood described in the paper as per his toy preferences and his wish to "play alone for hours with a few toys" but also other potentially important points: "He continued with selecting his food (white and squared foods only) and drinking milk only from his infant feeding bottle, until he was an adolescent". The outcome of various psychometric assessments specific to autism are also discussed, including his scores on the ADOS and ADI (see here) eventually placing him on the autism spectrum.

The important story of how this case report illustrates how much further we need to go in terms of awareness of autism across the lifespan is also complemented by the discussions on how the autism spectrum seems (in some cases) to merge with other spectrums. The authors note: "signs and symptoms of both a psychotic disorder and an ASD might run isolated or in clusters during the entire lifespan, often not reaching the threshold for a categorical diagnosis until adulthood". I might add that the 'autism overlooked' part of this study is probably not something common to modern-day autism (see here).

Treading quite carefully, I have, on a few occasions on this blog, talked about how there may overlapping presentation of autism and psychosis in some cases (see here and more recently here). Indeed not so long ago, I read a very personal account of a mother caring for a child on the autism spectrum and her experiences of a meltdown: "... apparently it used to be called ‘childhood schizophrenia’ and as I watched Ethan totally lost to me at that moment, in what looked like a possessed fit, I could see how it could have been labelled as schizophrenia". I should point out that schizophrenia is not the same as a 'possessed fit' (see here) but can, and does, present as a range of psychological symptoms as part of the psychosis spectrum (see here).

Of course, one should not forget that a diagnosis of autism is seemingly protective of nothing in terms of other somatic or psychiatric conditions to be present. It might also be nothing more than coincidence that autism and psychosis ran parallel in the case of Mr. A. That being said and on the back of other texts such as the go-to paper by Tom Berney [2], I do wonder if greater thought needs to be put into looking at autism across the lifespan. How, in amongst the sometimes fluidic changes in presentation according to factors such as maturation [3], further screening for issues such as psychosis should be more regularly implemented in order to mitigate any negative effects they may have both for the person concerned and their loved ones?

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[1] Simoncini M. et al. Lifetime Autism Spectrum Features in a Patient with a Psychotic Mixed Episode Who Attempted Suicide. Case Reports in Psychiatry. 2014: 459524.

[2] Berney TP. Asperger syndrome from childhood into adulthood. Adv Psychiatr Treat. 2004; 10: 341-351.

[3] Helles A. et al. Asperger syndrome in males over two decades: stability and predictors of diagnosis. Journal of Child Psychology and Psychiatry. 2014. 3 October.

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Simoncini, M., Miniati, M., Vanelli, F., Callari, A., Vannucchi, G., Mauri, M., & Dell’Osso, L. (2014). Lifetime Autism Spectrum Features in a Patient with a Psychotic Mixed Episode Who Attempted Suicide Case Reports in Psychiatry, 2014, 1-4 DOI: 10.1155/2014/459524

World Autism Awareness Day and the CDC estimates

As designated by the United Nations General Assembly in 2007 (see here), today, Wednesday 2nd April 2014, is World Autism Awareness Day (#WAAD).

If you haven't already clicked the link to the UN statement above, I'd encourage you to do so and read over the articles included in the resolution.

Secretary-General Ban Ki-moon offers some wise words about the meaning of today in his annual address: "World Autism Awareness Day is about more than generating understanding; it is a call to action. I urge all concerned to take part in fostering progress by supporting education programmes, employment opportunities and other measures that help realize our shared vision of a more inclusive world".

Given the latest prevalence estimates from the US CDC suggesting that approximately 1 in 68 8-year olds in 2010 presented with an autism spectrum condition, the Secretary-General's words should resonate louder than ever. As expected, the debates rumble on about what the CDC figures do and don't show when it comes to the reasons to account for the fact that approximately "one in 42 boys and one in 189 girls... were identified as having ASD [autism spectrum disorder]" (see here for more details).

Discussions aside, just remember that behind every statistic are real people and real lives. And for the UK audience, have a look at Tuesday's BBC Horizon program: 'Living with autism' on the iPlayer.

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Autism in the UK: levelling off?

A short post today based on the paper by Brent Taylor and colleagues* (open-access) adding to the considerable literature on the autism numbers game. The headlines generated from this study are no better encapsulated than that of the BBC: "UK autism cases have 'levelled off'".

Reaching the summit? @ Wikipedia

The crux of the paper is that based on an analysis of the UK General Practice Research Database (GPRD) which carries details of several million patient records following patient contact with what's known as a General Physician (GP) here in the UK, cases of autism spectrum disorder included in those records were counted and annual prevalence and incidence rates based on 8-year olds were generated.

The results: cases of autism recorded on the GPRD suggested that "the annual prevalence of autistic spectrum disorders was estimated at 3.8 per 1,000 boys and 0.8 per 1,000 for girls".

Importantly, from the BBC: "The study concluded there was "compelling evidence that a major rise in incidence rates of autism, recorded in general practice, occurred in the decade of the 1990s but reached a plateau shortly after 2000 and has remained steady through 2010"".

There are also a few interesting nuggets of information to take from the Taylor paper such as the reason(s) put forward for the dramatic increase in cases witnessed during the 1990s. Another quote I'm afraid on whether greater awareness or broadening diagnostic criteria or diagnostic substitution were the sole causes of the increase: "it seems unlikely that these factors materially explain the extraordinary increase in the number of children diagnosed in the 1990s; nor the steady state that followed thereafter in 2004 through 2010". This is in line with what other commentators have talked about (see here).

The Taylor paper is an interesting one and no doubt will generate some discussion about the numbers of cases of autism. I note that the figures reported by Taylor and colleagues are somewhat at odds with other studies using different data collection methods based in other parts of the world such as that 1 in 50 figure in the US discussed quite recently (see here) or other incidence data (see here). Whether this is down to how the data are collected and verified or truly representative of differing rates of autism in different geographical populations is yet more substance for discussion.

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* Taylor B. et al. Prevalence and incidence rates of autism in the UK: time trend from 2004–2010 in children aged 8-years. BMJ Open. 2013; 3: e003219

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Brent Taylor, Hershel Jick, Dean MacLaughlin (2013). Prevalence and incidence rates of autism in the UK: time trend from 2004–2010 in children aged 8-years BMJ Open DOI: 10.1136/bmjopen-2013-003219