Edentulousness (no natural teeth) and intellectual (learning) disability

Edentulousness: "The property of being edentulous; lack of teeth."

I was brought to talk about edentulousness on this blog as a result of the findings reported by Kinnear and colleagues [1] and their observations suggesting that: "Adults with IDs [intellectual disability] have a high prevalence of edentulousness."

Based on data from an "adult cohort with IDs residing in Greater Glasgow and Clyde, Scotland", researchers compared rates of edentulousness in their 560 adults with ID with (asymptomatic) population data (n=2547) on this issue. The results were pretty worrying as "rates of edentulousness were consistently higher in the ID cohort" across various different age ranges: "9% vs. 1% aged 25-34 years; 22% vs. 2% aged 35-44 years; 39% vs. 7% aged 45-54 years; 41% vs. 18% aged 55-64 years; and 76% vs. 34% aged 65-74 years." Researchers also concluded that edentulousness was quite a bit more likely in those described as having "severe IDs".

When it came to other factors outside of ID severity that might be related to edentulousness, a few issues were observed such as "taking antipsychotics" and "living in the most deprived neighbourhoods." Other variables such as the presence of a diagnosis of autism and "problem behaviours" were are told, did not reach the thresholds for 'sufficient evidence'.

Why is all this important you might ask? Well, for lots of reasons, not least that the Kinnear results potentially highlight the important (continuing) issue of health inequality in relation to learning (intellectual) disability (see here). Indeed, one of my first thoughts when I read the Kinnear results is that quite a few of those news reports about people with learning disabilities that have been seen down the years, show people missing teeth. I can't help thinking what such pictures do for a person and their self-esteem. Even worse, such findings further highlight how for some people with ID, the state of edentulousness is literally forced on them (see here) with little or no regard for the views of them or indeed their loved ones.

Such findings do suggest that organisations need to try harder when it comes to improving the oral health of those with ID. I'm minded to suggest that those people who have a history of poor diet, those who are prone to pica (eating non-edible objects), those who have bruxism (teeth grinding) and/or those who have a history of persistent vomiting should perhaps be afforded particular dental attention. The link with antipsychotic use? Well, I also think more needs to be done in this area. There is already some data on medicines affecting oral hygiene [2] among which antipsychotics seem to have a place. The hows-and-whys need a little more understanding outside of the suggestion of xerostomia (dry mouth). Despite also the lack of any significant link between 'problem behaviours' and edentulousness identified by Kinnear, I'd still like to see whether certain 'challenging behaviours' might be contributory to such a state (see here) and perhaps one reason why antipsychotics were prescribed in the first place?

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[1] Kinnear D. et al. Prevalence of factors associated with edentulousness (no natural teeth) in adults with intellectual disabilities. J Intellect Disabil Res. 2019 May 6.

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Constipation and autism is not an uncommon combination

For those who know (or think they know) anything about autism, the title of this post - "Constipation and autism is not an uncommon combination" - is unlikely to be new or novel. Indeed, I've talked again and again and again about how functional gastrointestinal (GI) symptoms are very well over-represented when it comes to a diagnosis of autism (see here for example).

Enter then two further recent articles - one from Bradley Ferguson and colleagues [1] and one from María José Penzol and colleagues [2] - which further add to the evidence base in this area. Both papers are open-access, so please peruse at your leisure. The long-and-short of them can be quickly summarised:

• The Ferguson paper set out to examine the "relationships among GI [gastrointestinal] problems, problem behaviors, and internalizing symptoms in a sample of 340 children and adolescents with ASD [autism spectrum disorder]." Caregivers/parents reported on their child's GI issues. Bottom line: "The majority of the sample experienced constipation (65%)." Various other functional GI issues were also reported.
• The Penzol paper "reviewed the medical records of all patients admitted to the Comprehensive Medical Program for ASD (AMITEA) at Gregorio Marañón University General Hospital from January 2012 to December 2015." They analysed records for nearly 850 patients diagnosed with ASD. Their data were collected and transcribed by physicians including the "presence of fGID [functional gastrointestinal disorders] (gastrointestinal reflux, aerophagia, functional diarrhea, functional constipation, functional abdominal pain, cyclic vomiting)." Bottom line: "At least one fGID was present in 30.5% of patients, constipation being the most prevalent (47.4% of fGID patients)." They also observed that GI issues *seemed* to be related to the presence of intellectual (learning) disability, sleep issues and behavioural problems. These are not novel associations (see here and see here).

Of course there are strengths and weaknesses to those studies. No-one would dispute the fact that these are not perfect data. But, set within the context of a mountain of peer-reviewed science suggesting that something like constipation is over-represented when it comes to a diagnosis of autism, the collected results add a further layer of evidence. They also ask the question 'why', why oh why have we not got a greater handle on how to successfully treat/manage such symptoms?

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[1] Ferguson BJ. et al. The Relationship Among Gastrointestinal Symptoms, Problem Behaviors, and Internalizing Symptoms in Children and Adolescents With Autism Spectrum Disorder. Front Psychiatry. 2019 Apr 9;10:194.

[2] Penzol MJ. et al. Functional Gastrointestinal Disease in Autism Spectrum Disorder: A Retrospective Descriptive Study in a Clinical Sample. Front Psychiatry. 2019 Apr 10;10:179.

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"Rates of death are higher for autistic individuals compared to the general population"

It's world autism awareness day today (2 April). The theme this year (2019), according to the United Nations, is "Assistive Technologies, Active Participation", something rather timely given the recent realisation that quite a few people diagnosed with autism are not properly represented [1] in various fields. Indeed, it continues a theme on the under-represented and under-studied populations within the autism spectrum being highlighted today of all days (see here)...

To mark this years autism awareness day, I'm turning to a topic that is probably about as important as it gets with regards to autism or any label: premature death. Specifically, highlighting how premature premature death can actually be when autism is diagnosed. I appreciate that this is not great PR for autism. But it's real-life for too many; and needs to be talked about as much as possible so people sit up and (hopefully) do something about it...

So...

The quote heading up this post - "Rates of death are higher for autistic individuals compared to the general population" - taken from the findings reported by Ye In (Jane) Hwang and colleagues [2] is perhaps not altogether accurate. A more precise meaning is required: as a group, those diagnosed with autism or autism spectrum disorder (ASD) are at some elevated risk for a premature (untimely) death than the non-autistic population (see here). Not exactly great dinner party conversation but vitally important nonetheless.

This is a topic that has cropped up time and time again in the peer-reviewed research literature and beyond (see here and see here). The grim trend crosses geographical boundaries and seems to cover the entirety of the autism spectrum. This time around New South Wales in Australia provided the source data with the aim "to report the rates and risk factors for mortality and cause of death in individuals on the autism spectrum (n = 35,929 age range 5-64) with and without concurrent intellectual disability (ID)."

The results: "Mortality rates for those on the autism spectrum were 2.06 times that of the general population." In line with other data (see here), those who also presented with intellectual (learning) disability alongside autism were at a higher risk of death. Epilepsy is also reported as being an important issue too (see here). A few other details are highlighted in the Hwang paper including the observations that "injury and poisoning" were some of the top-ranked causes of death as per other data (see here and see here).

What's more to say on this topic? Another call to action (see here)? Some more big news headlines (see here)? Another 'long-term plan' (see here)? All well-and-good, but what's actually being done to tackle such frightening statistics here and now and actually improve and extend lives in the here and now? What's currently helping autistic people to 'age well' [3]? And just in case you're of the inclination that epilepsy and intellectual (learning) disability are some how not a 'core' part of some autism, you're probably wrong in many cases (see here and see here)...

If the Hwang and other data aren't enough to satisfy you on this topic, another research paper with another (similar) set of grim findings has also recently been published [4]. Faced with such data, discussions about a puppet depicting one face of autism (see here) for example, don't seem all that important do they? Indeed, if half as much time was dedicated to highlighting the mortality stats associated with autism and making sure this makes headlines - over a 20 year period "6.4% of individuals died at an average age of 39 years" - may be more would be done to tackle them, including providing "adequate access to health care for individuals with autism spectrum disorder."

Food for thought, and hopefully important fuel for action...

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[1] Russell G. et al. Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis. Molecular Autism. 2019; 10: 9.

[2] Hwang YIJ. et al. Mortality and cause of death of Australians on the autism spectrum. Autism Res. 2019 Feb 25.

[3] Hwang YI. et al. Aging Well on the Autism Spectrum: An Examination of the Dominant Model of Successful Aging. J Autism Dev Disord. 2018 May 2.

[4] Smith DaWalt L. et al. Mortality in individuals with autism spectrum disorder: Predictors over a 20-year period. Autism. 2019. Feb 28.

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"To examine associations between early developmental exposure to ambient pesticides and autism spectrum disorder"

The quote heading this post - "To examine associations between early developmental exposure to ambient pesticides and autism spectrum disorder" - reflects the aim of the study published by Ondine von Ehrenstein and colleagues [1]. Said aim was accomplished by examining data from "California’s main agricultural region, Central Valley, using 1998-2010 birth data from the Office of Vital Statistics" with regards to autism diagnoses (see here) and pesticide use and exposure. The results: "Findings suggest that an offspring’s risk of autism spectrum disorder increases following prenatal exposure to ambient pesticides within 2000 m of their mother’s residence during pregnancy, compared with offspring of women from the same agricultural region without such exposure." Also: "Infant exposure could further increase risks for autism spectrum disorder with comorbid intellectual disability."

The von Ehrenstein findings also come with an accompanying editorial [2] both published in the British Medical Journal (BMJ). That editorial provides a good overview of the findings and, importantly, some of their limitations. The editorial notes for example, that: "the study included only children with a diagnosis of “autistic disorder” by the California Department of Developmental Services, based on criteria described in the Diagnostic and Statistical Manual of Mental Disorders version IV-R." It cautions that the von Ehrenstein findings might not generalise to "milder forms of autism spectrum disorder." This 'lack of generalisation to milder forms' is a real reversal of what is typically seen in the peer-reviewed autism research literature (see here).

I don't want to linger too much on the von Ehrenstein study but a few points are worth noting. The question of what specific pesticides *might* influence risk of offspring autism is a complicated one. The researchers reported that "small to moderately increased risks for the disorder in offspring with prenatal exposure to the organophosphates chlorpyrifos, diazinon, and malathion, the pyrethroids permethrin and bifenthrin, as well as to glyphosate, avermectin, and methyl bromide" were observed. They (and the editorial) talk about how further research is required to "examine the joint effects of multi-exposure mixtures to more effectively protect human health." This is important in the context of other research (see here and see here) and also to avoid any big media headlines (see here) about specific preparations 'causing' autism (which has not yet been authoritatively established). Given that various different classes of pesticides have somewhat slightly different biological actions, there is a lot of work to be done on the possible biological mechanisms/targets and any synergistic effects.

Also: "children with autism spectrum disorder and co-occurring intellectual disability were examined as a separate outcome." The fact that von Ehrenstein et al observed something like a 'stronger association' between pesticide exposure and those at the "more severe end of the autism spectrum" (the description according to one media source) is another important point requiring further study. I say this in the context that 'comorbidity' might not always be the best description for symptoms and diagnoses accompanying autism (see here).

The authors conclude that their findings - with appropriate caveats - have implications. Namely: "Exposure of pregnant women and infants to ambient pesticides with a potential neurodevelopmental toxicity mode of action should be avoided as a preventive measure against autism spectrum disorder." I don't think too many people would disagree with the sentiments of 'avoiding pesticide exposure' particularly for pregnant women and those who might also be more vulnerable to their potential effects. The questions now turn to genetics and biology and the question of why...

Music to close: Hostiles on the Hill (apparently)...

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[1] von Ehrenstein OS. et al. Prenatal and infant exposure to ambient pesticides and autism spectrum disorder in children: population based case-control study. BMJ. 2019; 364: I962.

[2] Bakian AV. & VanDerslice JA. Pesticides and autism. BMJ. 2019; 364: I1149.

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The NHS Long Term Plan and autism

The NHS (National Health Service) here in Blighty has recently released its Long Term Plan [1]. 'Long term' covers a period of 10 years and how, faced with ever-mounting financial and resource pressures, the NHS is continually trying to serve the needs of the population it serves in an ever-changing world.

Needless to say that lots of media outlets have covered the Long Term Plan (see here for example) and the various priorities that it includes. 'Prevention' and 'Early Detection' are words used quite a bit both in the reporting and the document itself, as the focus moves slightly away from hospitals to other front-line services like general practitioners (GPs) and community care agencies.

Mental health also figures in the Long Term Plan, as this area continues on its 'parity of esteem' journey (see here). Being careful not to label autism as a mental health condition, I note that autism and learning (intellectual) disability also gets a mention in the Plan for quite a few reasons...

So, starting on page 52 of the report: "Action will be taken to tackle the causes of morbidity and preventable deaths in people with a learning disability and for autistic people." It's about time that this was 'tackled'. I say that because the statistics on early mortality with autism in mind are truly, truly shocking (see here and see here). It's also of interest that the LeDeR (Learning Disabilities Mortality Review) initiative is mentioned in this context too (see here). How exactly such inequalities will be tackled is however, not precisely detailed in the Long Term Plan.

Then: "The whole NHS will improve its understanding of the needs of people with learning disabilities and autism, and work together to improve their health and wellbeing." Allied to improving uptake of annual health checks that should be available, the document talks about working with partners to "bring hearing, sight and dental checks to children and young people with a learning disability, autism or both in special residential schools." It's a start given what said overlooked issues might be involved with (see here) but what about this who aren't in special residential schools? The Plan also mentions how: "By 2023/24, a ‘digital flag’ in the patient record will ensure staff know a patient has a learning disability or autism." I believe this would also solve a few 'issues' with regards to the (estimated) prevalence of autism and/or learning disability here in Blighty (see here and see here).

Also: "Children and young people with suspected autism wait too long before being provided with a diagnostic assessment." Yes, yes they do (see here). The Plan therefore sets out to "test and implement the most effective ways to reduce waiting times for specialist services." You've got to be kinda careful with the wording here because, as far as I can see, there is no commitment to a timescale of diagnosis unlike the commitment to reducing those with autism being accommodated at inpatient units for example: "By March 2023/24, inpatient provision will have reduced to less than half of 2015 levels (on a like for like basis and taking into account population growth) and, for every one million adults, there will be no more than 30 people with a learning disability and/or autism cared for in an inpatient unit".

I'll leave readers to decide whether this Long Term Plan represents something 'good for autism' or just skirts around some of the bigger issues. Personally I see some positives and some 'missed opportunities'. Positives? Well as I said, anything that can impact on those shameful early mortality figures in the context of autism is a good thing. I do have questions about how issues like suicidality, that contribute quite a bit to the early mortality stats, are for example, going to be addressed, but if lives are going to be saved and hopefully enhanced, I'm all for that. Reducing waiting times for assessments is also a good thing, as is the idea of the 'digital flag' to (hopefully) help enhance the doctor-patient interaction where autism is a feature.

Negatives? Well, there doesn't seem to be a great amount of details mentioned and even less discussed about adult autism and what the Long Term Plan is going to do for the thousands of autistic adults (many of whom are not also described as 'learning disabled'). There are many pressing issues for this group (see here and see here), some of which cross-over with the primary tenets of the Long Term Plan (see here) with autism in mind. It strikes me that there is much more to do in this area.

So I guess we'll just have to see what happens...

Music to close: And given some recent news about Weezer, a sublime blast from the past...

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[1] The NHS Long Term Plan. January 2019.

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Autism and learning disability: "double disadvantage" on health status

The paper published by Kirsty Dunn and colleagues [1] continues a theme on how Census information - where data is systematically recorded about a specific population, normally a country - is influencing autism research (see here and see here). The Census in question is "Scotland's Census, 2011" and the rather forward facing step to include some questions about autism and learning (intellectual) disability in the Scottish Census for 2011.

This time around the same research group, who were very much involved in the publication of other Census based information on autism, set out with the aim to examine "the population prevalence of co-occurring intellectual disabilities and autism, and its impact on general health status." From a total population of over 5.2 million people who were included in the Scottish Census in 2011, they observed that about around 0.1% "had co-occurring intellectual disabilities and autism." Although perhaps not sounding like a lot of people, that percentage represented over 5000 people, including children and adults. Most of those with autism and learning disability were male.

Then to the headline conclusion related to the "double disadvantage" mentioned in the title of this post from the Dunn paper: "Their general health status was substantially poorer than for the rest of the population, more so for children/young people, and they had more limitations in their day-to-day activities." Researchers also mention how poor general health status was "apparent across the entire life course." They further recommended that: "Staff in services for people with either of these conditions need to be trained, equipped, resourced and prepared to address the challenge of working for people with this duality. This is essential, to address these substantial health inequalities."

I know the use of the words "double disadvantage" are probably not going to be well received by everyone, particularly those who insist that autism is more about difference than disability. I'm in partial agreement that, whilst a diagnosis of autism does have a profound influence on many aspects of life, not everything is necessarily to be seen as a 'disadvantage' for everyone. When it comes however to health inequality in the context of autism (and learning disability), I don't think many people would argue with the idea that both in the context of autism alone and autism + learning disability, various aspects of health - physical and mental - can and do suffer as a result (see here and see here for examples) and are, in that light, a disadvantage. With all this in mind, the call to action made by Dunn et al is not without some substantial merit...

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[1] Dunn K. et al. The prevalence and general health status of people with intellectual disabilities and autism co-occurring together: a total population study. J Intellect Disabil Res. 2018 Nov 28.

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Child maltreatment and autism continued

As per other occasions when the topic of child maltreatment and autism has been discussed on this blog (see here), this is a subject that is never going to make for great dinner party conversation. It's important however that, minus any sweeping generalisations, such issues are not just swept under the research or clinical carpet...

So it is then that the paper by Christina McDonnell and colleagues [1] is offered up for discussion, and once again minus any sweeping generalisations, how a diagnosis of autism spectrum disorder (ASD) with or without accompanying intellectual (learning) disability (ID) seems to increase the risk of maltreatment compared with not-autistic, not learning disabled population controls.

McDonnell et al discuss their cross-analysis of the records held at "the Department of Social Services (DSS) and the Autism and Developmental Disabilities Monitoring (ADDM) network" in parts of the United States (US). The ADDM has appeared before on this blog as part of those very important discussions about the (estimated) prevalence rate of autism in the US alongside related matters (see here). Researchers included quite a decent sized participant number - "ASD-only (n = 316), ASD and comorbid ID (ASD+ID; n = 291), ID-only (n = 1,280), and controls (n = 3,101)" - and set to work looking at the prevalence of maltreatment based on reported and substantiated cases.

So: "Controlling for demographic factors, this study found significantly higher odds of reported and substantiated maltreatment among children with ASD-only (odds ratio = 1.86 for reported, 1.51 for substantiated), ASD+ID (odds ratio = 2.35 for reported, 1.97 for substantiated), and ID-only (odds ratio = 2.45 for reported, 2.49 for substantiated) relative to a population control group." Specific maltreatment falling into the category 'physical neglect' was notable among the groups, but various other forms of abuse were also detailed as appearing. Researchers also observed that: "Maltreatment was associated with higher likelihood of aggression, hyperactivity, and tantrums for children with ASD."

In light of other independent evidence in this area [2] I don't think anyone should be too surprised by the McDonnell findings. I don't say that in a blasé manner; maltreatment is not something that any child should have to tolerate. I merely point out that the evidence is accumulating suggesting that a diagnosis of autism or learning disability does seem to increase the risk of such an issue occurring.

On the previous blogging occasion where this topic was discussed (see here) I went through some of the possible hows-and-whys of such behaviour(s). I'm not going to repeat myself here, aside from stressing that maltreatment probably has many different 'causes' or routes towards it and the more successful ways to tackle such issues are probably going to be multi-factorial.

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[1] McDonnell CG. et al. Child maltreatment in autism spectrum disorder and intellectual disability: results from a population-based sample. J Child Psychol Psychiatry. 2018 Oct 19.

[2] Duan G. et al. Physical maltreatment of children with autism in Henan province in China: A cross-sectional study. Child Abuse Negl. 2015 Oct;48:140-7.

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"Children with DDs [developmental disabilities] had higher chronic school absenteeism"

The findings reported by Lindsey Black & Benjamin Zablotsky [1] were not unexpected. Utilising data derived from the 2014–2016 National Health Interview Survey (NHIS) based in the United States, researchers concluded that: "In this nationally representative sample of children aged 5–17 years, children with ADHD [attention-deficit hyperactivity disorder], autism spectrum disorder, and intellectual disability were more likely to have had chronic school absenteeism compared with children who did not have these conditions even after controlling for demographic and selected physical health conditions." The reason I say that such findings were not unexpected is because such observations add to other independent literature on this topic (see here) suggesting that school isn't always a great environment for children with such diagnoses and attendance figures perhaps reflect that.

This isn't the first time that the NHIS has cropped up on this blog (see here and see here). On those previous occasions, the NHIS has provided important evidence that the rates of various developmental disabilities are continuing to increase (autism, developmental delay) whilst some diagnoses are a little more static (intellectual disability) in line with other data (see here). This time around, researchers looked at what role developmental disabilities (DDs) might play in the finding that "14% of all public school students are chronically absent from school, missing 15 or more days per year" in the United States.

Based on the NHIS methodology that involved sampling households with said households completing "a brief questionnaire to collect selected demographics and broad health measures", researchers first ascertained whether "the parent had ever been told by a doctor or health professional
that the child had attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder, intellectual disability, or other developmental delay." They also asked about school absenteeism using the question: "During the past 12 months, about how many days did (sample child) miss school because of illness or injury?" Findings were collated and analysed.

Results: covering nearly 27,000 children, of which about 1 in 10 were diagnosed with ADHD and 2.5% reported to be diagnosed with an autism spectrum disorder (ASD), a few important results emerged. Those diagnosed with an intellectual disability (sometimes called a learning disability here in Blighty) "had the highest prevalence of chronic school absenteeism (14.0%)." Chronic school absenteeism by the way, was defined as 15 or more days missing from school throughout the school year. The percentage rates for school absenteeism for autism, developmental delay and ADHD were 9%, 7.2% and 5.2% respectively. Compared against data from children without any reported developmental disability diagnosis, those with DDs were quite a bit more likely to be chronically missing from school even when adjusted for various other co-occurring physical health conditions such as "asthma, allergies, and headaches" or for other demographic differences ("age, sex, race and ethnicity, poverty status, family structure (categorized as two parent, single parent, or other), and geographical region of residence").

Even taking into account possible research caveats such as the fact that "data are based on a parent or guardian report" the Black/Zablotsky findings represent some important data. 'Every school day counts' is an oft-heard about phrase in educational circles, drawing attention to the idea that not only is educational attendance a legal requirement in many countries, but also that as chronic absenteeism creeps in, so educational chances and opportunities start to slip by and where this can potentially lead (see here). This is bad for the kids, bad for the teachers (who often have to 'go over' missed work) and not particularly great for the rest of the class either.

Bearing in mind all that, the next question should really be 'why?' Why are children with DDs more prone to school absenteeism and what can be done to remedy the situation? Well I don't doubt that it's going to be complicated and so doesn't need any sweeping generalisations from me or anyone else. I'm first drawn to mention that whilst Black & Zablotsky controlled for various physical health conditions that might affect school attendance, they probably did not control for all of them (including bouts of illness due to infections for example) and so one needs to look more closely to see if these exerted any effect on their results (see here for another example). My second preference for further study would be to see whether education is actually meeting the child's individual requirements as another area associated with chronic absenteeism. Y'know, the idea that school can be a source of significant stress and strain for children (see here); even in those educational environments that have a more specialised ethos (see here). Finally, and again minus any sweeping generalisations, more research is needed on family circumstances and child's school absenteeism. I know it's a little uncomfortable to mention but irrespective of a child's diagnostic status or not, some parents are not always 'on message' when it comes to the 'every school day counts' idea. Coupled with a child who might not be particularly interested in school, and well, it's not difficult to see how this could play out with regards to the onset and perpetuation of chronic absenteeism. I would add that this is not a universal 'blame the parents' observation.

There are no easy fixes to this issue. But identifying potentially vulnerable groups, asking appropriate questions and providing targeted support, would seem to me to be a step in the right direction.

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[1] Black LI. &  Zablotsky B. Chronic School Absenteeism Among Children With Selected Developmental Disabilities: National Health Interview Survey, 2014–2016. National Health Statistics Reports. 2018; 118.

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Quality of life and autism continued

"In this study it was found that psychiatric comorbidity, sleeping difficulty, intellectual disability, maladaptive behavior, adaptive functioning, autism symptomatology, main daytime activity and residence were associated with QoL [quality of life], independent of respondent type."

So concluded the findings reported by Ane Knüppel and colleagues [1] continuing an important research theme looking at quality of life with autism in mind (see here and see here and see here). There's nothing specifically novel about the factors reported on as affecting quality of life (QoL) where a diagnosis of autism is mentioned (mental health issues, autism severity, comorbidity, activities, social inclusion) but the fact that authors drew on data from both self-reports and proxy-reports is important and perhaps provides an important dual perspective. Indeed as the authors noted: "Proxy-reported QoL is different from self-reported QoL and should be considered as an alternative source of information." Similar sentiments have been expressed recently (see here).

Having previously talked [2] about the properties of the specific instrument used to gauge QoL with autism in mind, the authors relied on responses on the INICO-FEAPS scale in their investigation. More than 1700 participants with autism completed the scale where: "For 165 individuals with ASD [autism spectrum disorder], self-reports only were available, and for 863 individuals with ASD, only parental proxy-reports were available." The scale itself is pretty comprehensive, consisting of "72 items divided into the following eight subdomains: self-determination, rights, emotional wellbeing, social inclusion, personal development, interpersonal relationships, material wellbeing, and physical wellbeing." A higher score on the INICO-FEAPS scale denotes a higher QoL 'level'. Various other measures were also included for study; some of them based on the setting of the study in Denmark and the fact that Scandinavian countries are particularly 'geared up' for collecting all-manner of details on the basis of various national registries held on the population.

Alongside the results suggesting that various factors seemed to be important to QoL, there were some details to consider. So: "Across all respondent groups, the lowest rated QoL domains were emotional wellbeing (range of means = 71.10–74.05) and interpersonal relationships (range of means = 65.07–71.88), and the highest rated QoL domains were rights (range of means = 83.79–86.21) and material wellbeing." Further, researchers also observed that being employed or in education also correlated with a higher QoL score "compared to individuals without any regular daytime activity" and "significant associations were found for all respondent groups, with lower levels of QoL among individuals living with their parents... and among individuals with ASD living outside the family home with support... compared to individuals living independently without support."

I was also interested in the idea discussed by the authors that: "treating psychiatric comorbidity, reducing maladaptive behavior, raising the level of independence, and offering individuals with ASD an opportunity to be involved in any job-related occupation or to receive education may raise the level of QoL." 'Treating psychiatric comorbidity' is already a research and clinical priority when it comes to autism (see here and see here). Yes, science needs to do a lot better in terms of establishing the 'hows-and-whys' of such comorbidity being over-represented alongside autism but there are some important themes starting to emerge (see here) including that looking at core autism symptoms as being potential risk factors for the appearance of such issues. And once again we can look to an important group of people for further clues as to how such psychiatric issues are indeed perhaps more 'core' than comorbidity (see here).

Although 'reducing maladaptive behaviour' potentially covers a lot of 'challenging' ground - "Behavior classified as self-destructive, breaking belongings, defiant, disruptive, hurtful to others and/or socially offensive" - I don't think anyone would seriously argue against the idea that such behaviours are neither good for the individual nor good for those around them. I'm minded to suggest that the reason(s) for such behaviour are likely to be complex (see here and see here), but one thing that could be useful would be to look at some of the research on particular 'profiles' being present and connected to autism and beyond (see here) as a starting point.

And then there is also the suggestion of a possible effect for society more generally, as in ensuring that education and employment opportunities are available to all and making 'an inclusive society' a priority...

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[1] Knüppel A. et al. Quality of life in adolescents and adults with autism spectrum disorder: Results from a nationwide Danish survey using self-reports and parental proxy-reports. Research in Developmental Disabilities. 2018; 83: 247-259.

[2] Knüppel A. et al. Psychometric properties of the INICO-FEAPS scale in a Danish sample with autism spectrum disorders. Research in Developmental Disabilities. 2018; 75: 11-21.

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The Scotland Census 2011 and autism again: focus on children and young adults

Consider this post an extension of some previous chatter on this blog (see here). That previous chatter was based on the work published by Ewelina Rydzewska and colleagues [1] talking about how (a) Scotland seems to be pretty unique insofar as 'asking about autism' in their population Census, and (b) how examination of such a query, alongside asking a few other questions, represents an important research resource particularly pertinent to the idea that autism rarely appears in some sort of diagnostic vacuum (see here).

Now there's more from Rydzewska and colleagues [2] and their analysis of the Scotland 2011 Census. This time the specific focus was on under 25 year olds (their previous research was dedicated to looking at "the prevalence of comorbid mental health conditions and physical disabilities in a whole country population of adults aged 25+ with and without reported autism").

Researchers report that 1.6% of their population (25,063/1,548,819) were reported to have (or someone on their behalf) ticked the box to the question 'have any of the following conditions' that was labelled 'Developmental disorder (for example, Autistic Spectrum Disorder or Asperger's Syndrome)'. This was quite a bit higher than the 0.2% of adults (over 25 years old) that was previously reported on. They also reported that the traditional 4:1 male:female ratio regarding autism was intact as other recent population (estimated) prevalence studies have also indicated (see here and see here).

Then to the main event: "Autism had an odds ratio of 5.4 (5.1–5.6) for predicting deafness/partial hearing loss, odds ratio of 8.9 (8.1–9.7) for blindness/partial sight loss, odds ratio of 49.7 (38.1–64.9) for intellectual disabilities, odds ratio of 15.7 (13.4–18.5) for mental health conditions, odds ratio of 15.8 (14.1–17.8) for physical disability and odds ratio of 3.9 (3.8–4.0) for other conditions."

It's worthwhile reiterating some of those observations made by Rydzewska et al: the chances (odds ratio) of intellectual or learning disability appearing alongside autism in under 25 year olds was about 50 times more likely than in those not ticking that 'Developmental disorder' option. In terms of specific percentage frequencies, the figures for learning disability in the age groups 0-15 years (children) and 16-24 years (young adults) where autism was mentioned were 13-14% and 18% respectively. This was contrasted against percentages of 0.3% and 0.4% in similar non-autistic age groupings. I'm also minded to include the observation that girls with autism across both age groups seemed to be at some elevated risk of learning disability when compared to boys. The next highest risk values came in for the presence of a mental health condition where again girls with autism seemed to shoulder the highest risk (a divide that seemingly grew as children aged into young adults). The conclusion yet again is that for quite a few people, autism is not a stand-alone condition/label and that such "conditions are disabling and have a significant impact on long-term quality of life; their coexistence with autism adds extra complexity."

On the last blogging occasion when the first research paper from Rydzewska using the Scotland Census 2011 data was discussed, I held back from commenting too much on the adult prevalence figure picked up by authors. This time I'm not going to, because the difference between children/young adults with autism (or a developmental disorder) (1.6%) and autistic adults (0.2%) is too stark not to mention. I appreciate that there may be many variables/factors contributory to such figures, and that such figures are perhaps prone to some degree of error (bearing in mind the legal requirements behind completing a Census), but the disparity between them cannot be just brushed under the scientific carpet. They show that for the year 2011 in Scotland, autism - all forms of autism - was quite significantly over-represented in children and young adults compared with autism in over 25 year old adults. They show that arguments about the prevalence of adult autism potentially being on a par with childhood autism were/are wrong. They show that autism is disproportionately affecting children/young adults and by inference, the trend in autism being diagnosed is an upward one primarily stemming from childhood/young adulthood diagnoses and not from the late diagnosis of adults.

By saying that I'm not ruling out the idea that there may be adults in Scotland in 2011 who had slipped through the diagnostic net with autism in mind. I'm not saying that some 7 years later, things haven't moved on with regards to autism awareness and the like. But I do find it extremely unlikely that there were literally thousands and thousands of 'hidden' people 'undiagnosed' in Scotland in 2011 however much some people have inferred, and continue to infer, that this is true. The peer-reviewed evidence for this phenomenon is just not there, and certainly nowhere near there when it comes to those with 'very visible' autism who for example, require significant day-to-day social and health care support (see here and see here for examples).

I am hoping that when the next Scottish Census (2021) results eventually come in we might see more from this fabulous research opportunity with autism in mind. Even better would be for other countries to follow the Scottish lead in their questioning of their nation and perhaps provide a more accurate picture of the rates of autism across the age groupings.

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[1] Rydzewska E. et al. Prevalence of long-term health conditions in adults with autism: observational study of a whole country population. BMJ Open. 2018 Sep 1;8(8):e023945.

[2] Rydzewska E. et al. Prevalence of sensory impairments, physical and intellectual disabilities, and mental health in children and young people with self/proxy-reported autism: Observational study of a whole country population. Autism. 2018 Oct 17:1362361318791279.

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Long-term health conditions and autism: a Scottish perspective

There were a few things that raised my eyebrow (Roger Moore style) in the paper published by Ewelina Rydzewska and colleagues [1]. The primary finding that: "Comorbidity is substantially greater in adults with reported autism than in other people" was one of the eyebrow raisers. But also the observation that: "Scotland’s Census is one of the few country censuses that asks every person in the country whether or not they have autism, indeed it may be unique in this regard" was another. There were others too...

Back to the first point and the primary purpose of the Rydzewska study: "to investigate the prevalence and predictors of deafness or partial hearing loss, blindness or partial sight loss, intellectual disabilities, mental health conditions, physical disability and other condition, in a whole country population of adults with reported autism aged 25+ compared with their peers without autism." Said whole country was somewhere not a million miles away from where I write this post - Scotland - and results based on Scotland's Census 2011. The Census did what Census (I don't know what the plural should be!) are normally designed to do: to provide details on the population (N=5 295 403) covering everyone "whether living in communal establishments (such as care homes and student halls of residence) or private households." As mentioned, I wasn't aware that Scotland asked about whether someone has autism or not as part of the Census but I'm impressed that they do. As to the authors' testing the idea that autism is rarely a stand-along diagnosis, well let's just say that this has already been discussed a few times in the peer-reviewed science arena (see here for example) so we kinda had some clues as to what might have been observed.

Results: "There were 6649/3 746 584 (0.2%) adults aged 25+ recorded to have autism as defined here, 4610 (69.3%) of whom were men and 2039 (30.7%) women compared with 1 776 845 (47.5%) men and 1 963 090 (52.5%) women in the adult population without autism." Let me just say that again: in the Scottish 2011 Census, that covered both private households and 'communal establishments' only 0.2% of the respondents above 25 years of age were reported to have a diagnosis of a "developmental disorder (eg, autistic spectrum disorder or Asperger’s syndrome)." Interesting.

Continuing: "The rate of autism was lowest in the oldest age groups (autism may be associated with reduced life expectancy)." 'Autism may be associated with reduced life expectancy' is another important detail mentioned in the Rydzewska study and something that taps into a wealth of other science (see here for example) observing that the diagnosis of autism can, very much, be a life-limiting label for some.

Then to the main event: lots of different diagnoses/labels were seemingly over-represented alongside a diagnosis of autism. Indeed, pretty much all of the ones enquired about by researchers fell into that category. A third of participants for example, reported experiencing 'something' under the heading of "a mental health condition"; a finding also fairly consistently stretching across individual analyses based on different age bandings. When it came also to the category titled 'intellectual disabilities' (also known as learning disability here in Blighty) the figures stood out: "A high rate of intellectual disabilities in children with autism has been described previously; we have now quantified the extent of this—29% (25%–32% depending on age group; 22%–35% for men and 31%–42% for women)—in a much larger study of adults." This [roughly] accords with other independent data too (see here).

What's more to say? Well yet again, it's all about not looking at autism as some sort of 'stand alone' label given the over-representation of some pretty significant categories of health issues, covering both the somatic (physical) and the psychological. I don't think anyone would disagree with such an observation in this day and age as the words 'Autism Plus' are also mentioned in the Rydzewska paper. Once again, this also has implications for preferential screening when a diagnosis of autism is received and also the treatment/management of any issues that are detected (see here and see here for examples).

As for that 0.2% adult (over 25 years old) prevalence figure noted by the authors, I'm not going to say too much more about that for now. Aside that is, from dropping in some discussions about another adult autism prevalence study (see here) which reported that figures were potentially climbing in line with the childhood autism prevalence figures (see here). I'm sure that there are multiple discussions that could be generated around such figures but not here, not now, and not to distract from the important observation that autism rarely appears in a diagnostic vacuum...

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[1] Rydzewska E. et al. Prevalence of long-term health conditions in adults with autism: observational study of a whole country population. BMJ Open. 2018;8:e023945.

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In-utero exposure to antiepileptic drugs and offspring learning disability

There was something quite familiar about the findings reported by Laura Fuglslang Bech and colleagues [1] investigating any "association between in utero exposure to antiepileptic drugs and learning disabilities in the first year of compulsory education among offspring." Familiar because this class of medicines - antiepileptics - used to primarily treat/manage epilepsy and seizure disorders have been put under the spotlight in recent years as a result of various *associations* with offspring childhood developmental disorders/conditions when used during pregnancy (see here and see here).

Obviously one has to be quite careful when it comes to talking about this class of medicines. Antiepileptics, as I have mentioned before, are not typically dispensed willy-nilly, and on many occasions have proved to be not just a life-enhancer but also a lifesaver to those living with epilepsy. The balancing act comes when they are prescribed to women of child-bearing age and ability, and the possibility of them producing 'adverse' effects' on the developing child.

Bech et al focused on learning disability as a possible offspring outcome following pregnancy exposure to a range of antiepileptic medicines. One of those marvellous Scandinavian population registries provided the research starting point (based in Denmark) and lead to the participation of some 630 cases ("offspring exposed to antiepileptic drugs in utero") and 430+ controls ("unexposed offspring of mothers previously redeeming antiepileptic drug prescriptions").

Results: "Learning disabilities were identified among 7.1% cases compared with 3.7% for controls." Although not at first glance showing a huge difference between the groups, a little statistical analysis revealed that: "During any trimester, the adjusted OR [odds ratio] of the association between in utero exposure to antiepileptic drugs and learning disabilities was 2.20 (95% CI 1.16 to 4.17)." When taking into account different types of antiepileptic medicines and their possible risk profile, yet again one particular medicine stuck out: valproate. As the authors mention: "valproate carried a higher risk (OR 4.67, 95% CI 1.73 to 12.59)" compared with other antiepileptic medicines. This accords with other findings.

As with any observational study of this type, one has to be a little careful with the old 'correlation is not necessarily causation' thing. But set against a tide of research observing similar trends - particularly with respect to the use of valproate - and indeed, a rodent model of autism called the valproate rodent model of autism - it's getting ever harder to say that pregnancy valproate use in particular, is not associated with a variety of adverse offspring outcomes...

If in doubt, please speak to your prescribing physician. Please don't tinker yourself with things that you shouldn't tinker with...

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[1] Bech L. et al. In utero exposure to antiepileptic drugs is associated with learning disabilities among offspring. J Neurol Neurosurg Psychiatry. 2018 Aug 3. pii: jnnp-2018-318386.

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The continuing legacy of DDT? Maternal insecticide levels and risk of offspring autism

I see that the paper published by Alan Brown and colleagues [1] reporting on "the first biomarker-based evidence that maternal exposure to insecticides is associated with autism among offspring" has been garnering headlines and ruffling feathers in equal measure.

It's seemingly guaranteed that whenever a study mentions words like 'toxins' and 'environment' in the context of (some) autism, some brows become furrowed, decrying any possibility of a *connection*. In equal measure, it has to be said, opposite views on such evidence being proof positive that 'autism is all environmental' and 'man-made' also emerge. To quote from an imaginary character: "Darkness rises and light to meet it!" (I'll leave you to decide which side is which).

DDT - dichlorodiphenyltrichloroethane - mentioned in the title of this post, is an insecticide categorised as a persistent organic pollutant (POP). Like many such products, it started off being used with noble intentions, to control important diseases like malaria and typhus, and even earned someone a Nobel prize as a result. It's also credited with saving millions of lives during the period of its use; as one WL Churchill apparently said: "The excellent DDT powder has been found to yield astonishing results against insects of all kinds, from lice to mosquitoes."

But things did not remain so rosy for DDT as data (see here) and a book subsequently emerged suggesting a link between exposure to DDT and various adverse animal and human outcomes. Restrictions on use and banning eventually came into effect and the glory days of DDT started to wane, albeit not with everyone being totally supportive of an outright ban. As per the POP status of DDT however, restrictions and banning did not mean that this stuff magically disappeared from the environment overnight. Coupled to a less than universal ban on the use of DDT, and residues of DDT can still be found in the environment today, albeit in lower levels than when it was at peak production and usage. And science is able to test for them fairly accurately...

Set in this context, the Brown paper did just that; the DDT 'connection' stems from researchers noting that levels of a specific metabolite of DDT - p,p'-dichlorodiphenyl dichloroethylene (p,p'-DDE) - measured in "maternal serum specimens from early pregnancy" seemed to show a 'threshold' *association* with offspring developmental outcomes such as autism (with and without intellectual disability). This, in the context that there is also some evidence of 'transplacental transfer' of such compounds [2], and where other studies have talked about the possible effects of in-utero exposure to DDT and offspring neurodevelopment [3] as part of a wider appreciation that infants and children may be uniquely sensitive to such pesticide exposures (see here). Brown et al report such results as part of the Finnish Prenatal Study of Autism (FIPS-A), an initiative that has already yielded quite a few important peer-reviewed findings (see here), some of which have been previously covered on this blog (see here for example). Study organisation and participant numbers are pretty good in the FIPS-A initiative, albeit with some methodological caveats (i.e. the use of observational study not able to prove cause-and-effect).

The finding of a 'dose-related' (threshold-related) relationship between p,p'-DDE and offspring autism risk noted by Brown is also interesting. Add in the observation that autism accompanied by intellectual (learning) disability also seemed to show an apparent relationship to p,p'-DDE levels and there is a scheme of additional work to be followed. Not least with regards to mechanism(s) - preterm birth risk has been mentioned which could 'overlap' with some autism-related data [4] - and whether for example, other risk 'compounds' might also be important. Indeed, I understand that the possibility of 'synergistic' interactions might be on the cards in future study for this group in light of previous results [5]. And going back to those findings from Eskenazi et al [3] who noted that "breastfeeding was found to be beneficial even among women with high levels of [DDT] exposure", I do wonder if this variable might also require further examination in the context of the Brown findings too [6].

Obviously one has to be slightly careful with any sweeping generalisations made as a result of the Brown findings. This research did not say that all autism was 'caused' by DDT exposure or any other insecticide or related compound, and neither was it designed to do so. The authors also mentioning that their study "has implications for the prevention of autism" is perhaps more than a little premature and seemingly at odds with some (recent) opinions.

But the Brown study did make a point of testing for DDT metabolites in mums-to-be and, set within other independent research findings *highlighting* various other pollutant exposures as potentially being relevant to the developing brain and important offspring outcomes like autism (see here and see here and see here for examples), one cannot simply brush off the Brown results and their important implications. Further research is implied minus hype.

Coincidentally, a 'roadmap' for incorporating the 'exposome' into psychiatry research was recently published [7] and could prove quite useful in the context of further research in this area...

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[1] Brown AS. et al. Association of Maternal Insecticide Levels With Autism in Offspring From a National Birth Cohort. Am J Psychiatry. 2018 Aug 16:appiajp201817101129.

[2] Zhang X. et al. Transplacental transfer characteristics of organochlorine pesticides in paired maternal and cord sera, and placentas and possible influencing factors. Environ Pollut. 2018 Feb;233:446-454.

[3] Eskenazi B. et al. In utero exposure to dichlorodiphenyltrichloroethane (DDT) and dichlorodiphenyldichloroethylene (DDE) and neurodevelopment among young Mexican American children. Pediatrics. 2006 Jul;118(1):233-41.

[4] Agrawal S. et al. Prevalence of Autism Spectrum Disorder in Preterm Infants: A Meta-analysis. Pediatrics. 2018 Aug 3. pii: e20180134.

[5] Cheslack-Postava K. et al. Maternal serum persistent organic pollutants in the Finnish Prenatal Study of Autism: A pilot study. Neurotoxicol Teratol. 2013 Jul-Aug;38:1-5.

[6] Tseng PT. et al. Maternal breastfeeding and autism spectrum disorder in children: A systematic review and meta-analysis. Nutr Neurosci. 2017 Oct 18:1-9.

[7] Guloksuz S. et al. The Exposome Paradigm and the Complexities of Environmental Research in Psychiatry. JAMA Psychiatry. 2018 Jun 6.

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Constipation in kids with autism: financial as well as health implications

I've always be a little perplexed about the response to gastrointestinal (GI) issues appearing alongside autism. Time after time after time, the peer-reviewed science domain serves up evidence that both functional and more pathological bowel issues are over-represented in autism (see here and see here for examples) and cause considerable suffering. Yet some parts of the lay and research community seemingly 'gloss over' such findings. It's almost as if the acceptance that 'some' autism seems to be 'bowel-related' would shatter some people's view of autism. Perhaps it's also because there would have to be some [partial] acceptance of other related uncomfortable findings too (see here)...

The findings reported by Brandon Sparks and colleagues [1] continue the theme that functional bowel issues such as constipation are part and parcel of some autism. And not only do they have often severe health implications for the person concerned, but there may also be wider economic implications too. So, researchers concluded that: "ED [emergency department] visits by children with ASD [autism spectrum disorder] were more likely to be constipation-related compared with visits by children with other chronic conditions or children with no chronic conditions." Further: "Hospital charges were higher in children with ASD than in those without chronic conditions."

Based on data derived from the Nationwide Emergency Department Sample (NEDS), a US initiative that records diagnostic trends in ER (also known as Accident & Emergency here in Blighty) visits, authors looked for those with and without a diagnosis of autism (ASD). They observed that constipation was an important variable in those ER visits when it came to autism and continued to be important when ER visits turned into hospital admissions. They conclude by saying that there may be a need for "developing more effective outpatient therapies for constipation in children with ASD."

Constipation might not sound like a condition that requires an ER visit. But if and when it does, I guess you could probably say that it's something quite serious. Just as reports in relation to those with a learning disability have highlighted how constipation is (a) over-represented, and (b) has actually been cited as a cause of death (see here), so perhaps you can see why there should be a lot more urgency in this area of the autism research and practice landscape.

I added in the 'financial as well as health implications' bit to the title of this post to stress how, even if someone chooses to ignore the pain and physiological effects that constipation can cause, such symptoms are also placing quite a burden on resources and finances. I personally don't much like the idea of talking too much about 'how much autism costs' but if that's the only way to make people listen and actually do something about bowel issues in relation to autism, then I'm quite willing to continue to talk money and strains (no pun intended) on resources...

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[1] Sparks B. et al. Constipation in Children with Autism Spectrum Disorder Associated with Increased Emergency Department Visits and Inpatient Admissions. The Journal of Pediatrics. 2018. June 1.

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One in five 8-year olds "received a psychiatric diagnosis"

"Question: What is the cumulative incidence of psychiatric diagnosis and use of psychotropic medications in a Medicaid-insured birth cohort by age 8 years?"

Answer: About 1 in 5 children were in receipt of a psychiatric diagnosis at age 8, and about 10% were in receipt of psychotropic medication.

So said the findings reported by Dinci Pennap and colleagues [1] who relied on "Medicaid claims data for newborns in a mid-Atlantic state in 2007... and followed up for 96 months or less through December 31, 2014." As per the focus on Medicaid - an initiative that 'helps with medical costs for some people with limited income and resources' - this was a study conducted in the United States, and included data for over 35,000 infants/children. The sorts of psychiatric diagnoses examined by Pennap et al included "ADHD [attention-deficit hyperactivity disorder], disruptive disorders, learning disorder (LD), adjustment disorder, anxiety disorders, depression, ASD [autism spectrum disorder], and other psychiatric diagnoses" all diagnosed by a clinician, but also requiring "2 or more diagnosis claims on separate days."

Venturing further into the study results, we learn some potentially important details. So, across the years of study, approaching two-thirds of the diagnoses received were defined as 'behavioural'. As probably expected (see here), a diagnosis of ADHD was the most popular label - "accounted for 43.9% (1999 of 4550)" - followed by a learning disorder (disability) diagnosis received by just over 30% of the group. White children were seemingly more likely to receive any psychiatric diagnosis than African American children or Hispanic children, and there were some important sex/gender differences noted across various diagnostic labels. If I'm also reading the results correctly with regards to the label of ASD (autism spectrum disorder) (see here), it looks like about 2-2.5% of boys had received a diagnosis, bearing in mind that this is a figure showing as a percentage of those who had received a psychiatric diagnosis. As a function of the entire cohort (N=35,244), the cumulative incidence of ASD across the years (2007-2014) and across the genders was 0.89%.

Then to the issue of pharmacotherapy or medication prescription. Bear in mind that Pennap and colleagues were looking at psychotropic medication being delivered to infants and young children; a group where even greater caution than usual should be expected. They reported that just over 10% of the entire cohort had some history of psychotropic medication use. Alongside those stats on ADHD as a diagnosis, so the medicines classed as stimulants (indicated for ADHD) made up the biggest class of medication used. The authors also zoomed in on a few particular parts of their medication findings. First: "girls were twice as likely as boys to initiate treatment with anxiolytics and hypnotics (25.2% [173 of 686] vs 13.2% [199 of 1510]; P < .001)", also noting that "there is insufficient evidence to support the use of anxiolytics and hypnotics as first-line treatment for pediatric mental health conditions." Second, they discuss evidence suggesting that: "antipsychotics are largely used for off-label behavioral management in the birth cohort, highlighting the need for a delicate benefit-risk balance." Yes, indeed there is a need for exploring that 'delicate benefit-risk balance' (see here and see here). The other rather important finding concerned the use of more than one psychotropic medicine over a prolonged period of time: "approximately 20% of medicated children (433 of 2196 [percentage adjusted for right censoring]) received 2 or more classes concomitantly for 60 days or more." Remember again, these were young children that were under study.

The picture painted by Pennap et al is an important one. It adds to other independent evidence to suggest that across different geographies, psychiatric disorders including behaviourally and emotionally-defined conditions, are prevalent, dare I even say frequent (see here and see here). I'd also add in the 'yet newer' recent US CDC 'estimates' of autism in 8-year olds in this context too (see here).

In relation to the medication side of things, well, 10% of their total population have had some exposure to psychotropic medication, which is important. Accepting that (very) careful medicines management is required given the young age of the group, I'm gonna stick to a line that I've mentioned before regarding the clinical need for such medicines [generally] outweighing the risk(s). I say this on the basis that prescribing clinicians know their clinical population and know something about the risk-benefit profile of the medicines they're administering. I'd also add that when it comes to something like stimulants as a class of medicines, the clinical profile of such medicines is typically 'safe' (benefits outweighing risks) and can, in a few cases, literally be a life-saver (see here and see here). But all that does not mean that science shouldn't be looking to other avenues for intervention for various labels (see here and see here for examples), alongside keeping a sharp eye on ways and means of making such medicines even safer for such younger populations...

And just in case you thought the figure 1 in 5 only holds for the United States, you're wrong and resources and services here in Blighty are seemingly still struggling...

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[1] Pennap D. et al. Patterns of Early Mental Health Diagnosis and Medication Treatment in a Medicaid-Insured Birth Cohort. JAMA Pediatrics. 2018. April 30.

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The International Classification of Diseases version 11 (ICD-11) has arrived...

Although peer-reviewed science research is the typical fodder for this blog, I am inclined to post about other important papers and/or events as they emerge. Today is such an occasion, as I draw your attention to an important announcement from the World Health Organization (WHO) recently titled: "WHO releases new International Classification of Diseases (ICD 11)."

Yes, this announcement covers the release of the the much anticipated ICD-11 system "for identifying health trends and statistics worldwide" also including "around 55 000 unique codes for injuries, diseases and causes of death." The ICD-11 schedule as it currently stands can be accessed here.

I might add that the release of ICD-11 is not the same as the 'roll out' of ICD-11, which are we informed "will come into effect on 1 January 2022." This 'advance preview' is basically a way of introducing the new schedule to the world and helping to facilitate a smooth transition from the version currently in use to this new system.

The ICD-11 has not been without some controversy as for example, a new condition known as 'gaming disorder' has been picked up by some media outlets (see here). Others have opined about the inclusion of "Traditional Medicine conditions - Module I" (see here) (where "disorders and patterns which originated in ancient Chinese Medicine and are commonly used in China, Japan, Korea, and elsewhere around the world" have been added in).

Relevant also to this blog - being a blog predominantly about autism research - is the entry on autism, and how the term 'Asperger syndrome' doesn't seem to figure (same as in the DSM-5). Instead, there is the umbrella term 'Autism Spectrum Disorder', complete with various sub-categorisation of diagnosis on the basis of intellectual development 'level' and functional language 'level'. The waning of the term Asperger syndrome is seemingly coincidental to the recent revelations about Hans Asperger (see here) but perhaps reflects long-standing 'doubts' about it's inclusion in previous versions of the diagnostic manual used (see here). There are other changes noted in ICD-11 which are also pertinent to autism (see here) including those relevant to the idea that a diagnosis of autism rarely exists in some sort of diagnostic vacuum (see here).

It's still very early days for the ICD-11 and so we'll have to wait and see what else emerges as physicians and the like across the globe come to terms with the revised schedule. I don't doubt that the evolving diagnostic nature of autism will also create discussions (and arguments) aplenty...

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