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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"two in five young people scoring above thresholds for emotional problems, conduct problems or hyperactivity"

The quote titling this post - "two in five young people scoring above thresholds for emotional problems, conduct problems or hyperactivity" - comes from the eye-opening findings published by Jessica Deighton and colleagues [1] (open-access available here).

It's based on a study of over 28,000 adolescents here in Blighty: "51.2% of whom were in Year 7 (age 11–12) and 48.8% of whom were in Year 9 (age 13–14) in 97 state-maintained secondary schools across six geographical locations in England."

Said young people were given the "child self-report Strengths and Difficulties Questionnaire (SDQ)" to complete, and the received data were analysed alongside other information collected by the authors "from the National Pupil Database: SEN status; FSM eligibility; child in need status (CIN, this is a child who either (a) is unlikely to achieve/maintain a reasonable standard of health and development without local authority provision; (b) is likely to be impaired without local authority provision; or (c) is disabled); and ethnicity (Asian, Black, Chinese, Mixed, White or any other ethnic group)."

In more detail: "18.4% scored above the abnormal threshold for emotional symptoms, 18.5% for conduct problems, 25.3% for inattention/hyperactivity and 7.3% for peer-relationship problems." Going back to the title of this post, researchers mention how "around two in five young people scoring above ‘abnormal’ thresholds for three of the four problem areas measured (emotional problems, conduct problems and hyperactivity)." They also observed that:

• SEN - special educational needs - status played a role in those figures (those with SEN were consistently more likely to provide an above-threshold response to all the areas measured, particularly peer-relationship problems). 
• Entitlement to free school meals (FSM), a potential marker of deprivation, was also associated with an above-threshold response to all areas.
• "Being male significantly increased the odds of scoring above threshold for behavioural problems and inattention/hyperactivity, whereas being female significantly increased the odds of experiencing emotional symptoms."

There are caveats attached to the Deighton findings; not least the sole reliance on "child self-report data from a very brief assessment tool" without any accompanying further analysis on the presence (or not) of diagnosable psychopathology. But, in the context of the large participant number included for study and that most adolescents aren't likely to 'lie' about their positive responses to items such as "I get very angry and often lose my temper" or "I take things that are not mine from home, school or elsewhere" I'd be inclined to view the Deighton findings as a pretty accurate representation of their 'in the thousands' cohort.

So where next? Well, if we're talking about findings observing that "42.5% scored above threshold for any one of the first three problem scales (emotional symptoms, conduct problems or inattention/hyperactivity)" we have to talk about what services are in place (and should be in place) to support this large group. This, on the basis that, such 'problems' can potentially lead to various other 'adverse' outcomes both in later childhood and beyond. And when I talk about 'support', I mean both support and intervention to help those young adults to manage such issues. All of this set in the context of a continually squeezed financial and resource position (at least here in Blighty).

The other question has to be 'why'? Why have so many young people reported as they have? Deighton et al talk about various factors as potentially being important: "the impact of austerity, increasing experience of academic pressures, reduced rates of sleep and increased use of social media", to a large extent talking about the social environment as playing a significant role. I don't doubt that these external factors and other related variables will play a role in how young people are reporting, but I'm not convinced that the social environment is the only important factor to consider. It's not, for example, beyond the realms of possibility that other genetic and non-genetic variables (i.e. in the physical environment) could also play a role; something I say in the context of a 'growth' in the number of children and young adults being diagnosed with all-manner of different behavioural and/or psychiatric labels (see here and see here for examples).

Something important seems to be going on with our young people (see here and see here). We have to assume that such an issue is not going to resolve itself and may even increase in terms of numbers as time goes on. We really need to find out what factors are behind this and start taking action... like now.

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[1] Deighton J. et al. Prevalence of mental health problems in schools: poverty and other risk factors among 28 000 adolescents in England. Br J Psychiatry. 2019 Jan 30:1-3.

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School environment plays a role in the occurrence of "child victimization": mainstreaming vs specialised provision examined

As the schools here in Blighty begin to open their doors for another year of education, I thought it timely to talk about schools and schooling in the context of autism...

With that being said, I don't want to get too heavily into the whole 'mainsteam school vs. specialised provision' in this post, but the findings reported by Ko Ling Chan and colleagues [1] do seem quite important. I was particularly struck by one of their observations: "Children attending special schools were at lower risks of victimization, while children with disabilities who had been placed in ordinary schools for inclusive education were at higher risks of most types of victimization when compared to children without disabilities."

I've previously covered the idea that, whilst the sentiments of 'mainstreaming' (placing students with additional educational needs in a general education setting) are noble ones, the reality is that mainstreaming can bring about its own challenges (see here). Indeed, the current focus here in the UK on the rise of mainstream school exclusions (expulsions) where certain diagnostic labels are mentioned (see here), is probably not entirely unrelated to this 'policy' of inclusive education functioning in a world of seemingly dwindling financial resources devoted to educational establishments and the individuals they serve. That said, things might be changing in this area (see here) if recent judgements are taken into account...

Chan et al set out to examine "the associations between disabilities and child victimization" as a function of school environment (i.e. mainstream vs. specialised educational provision). They looked at a cohort of over 4000 children aged between 6-18 years who "were receiving primary or secondary education in Hong Kong in 2016-2017." They assessed for "7 types of victimization in the past year" as a function of various diagnostic labels being received or not.

Findings: it's probably no surprise to anyone that: "Children with ADHD [attention-deficit hyperactivity disorder], internalizing disorder, autistic spectrum disorder, and restrictions in body movement were at higher risks of victimization while other types of disabilities were not." I say this on the basis that victimisation (a.k.a bullying) is no stranger to behavioural labels such as autism for example (see here and see here). The additional observation that school environment (type) might be some kind of moderating variable for the presence of such victimisation has already been mentioned. Authors add that: "When placed in a protective environment, children with disabilities could even be less vulnerable to victimization than those without disabilities."

There are a couple of implications from such findings. The first one is a fairly obvious one in that, although there are benefits to be had from mainstream school in the context of disability (hopefully with additional provisions tailored to the individual) insofar as interacting with peers and not being 'singled out' in an educational sense, there are potential downsides too. I know that we would all love for school to be a place that everyone enjoys and thrives in, but the reality is that they're not such a place for every child. Kids can be cruel. 'Bad kids' can be cruel and 'good kids' can be just as cruel; and it's often the perception of 'differences' (particularly differences in 'power') that starts and perpetuates the bullying process in a number of contexts. I know all that sounds harsh and a little apocalyptic, but fluffy clouds and unicorn thinking about 'everyone holding hands and getting along' is not going to help everyone.

Second, bullying hurts. It really hurts. Bullying also has many effects both in the short- and longer-term [2]. We can um-and-ah about the psychology of bullying and provide some psychobabble reason for why bullying has the effect it has, but the long-and-short of it is that bullying hurts. Bullying doesn't solely just impact on the child either. And whilst on the topic of bullying in the context of autism, the recent paper by Zoe Hodgins and colleagues [3] observing that "male adolescents with ASD [autism spectrum disorder] understand bullying differently than their TD [typically developing] peers" is perhaps also relevant to the content of this post.

Finally I go back to that statement from the authors about how 'protective environments' may help some children "be less vulnerable to victimization." It would be easy to suggest that as and when a diagnosis of something like autism is received, a child should have the right to attend a specialised facility that, among other things, potentially 'protects' them against bullying. Ah yes, in an ideal world. The reality however is that such 'protective environments' are not necessarily as protective as one might imagine. I say this on the basis that if even the nearest and dearest of kids with autism are not always the shoulder to cry on (see here) why would anyone assume that every child placed in such a protective environment would be immune to being a bully or being bullied? And without wishing to equate 'negative impressions' with bullying, a recent paper by Ruth Grossman and colleagues [4] *could* be relevant to such an argument: "adolescents with autism spectrum disorder form negative first impressions of autistic adolescents that are similar to, or lower than, those formed by neurotypical peers" (see here for my take). I repeat: specialised educational settings are not going to be immune to bullying behaviour. Added to all that is another issue: does placement in a 'protective environment' provide a false impression of the world at large? Y'know, children don't stay in school forever...

I would have loved to end this post with some all-encompassing answer to solving the issue of school environment and victimisation (bullying) behaviour in the context of various diagnostic labels. Unfortunately I can't. Yes, the data suggest that specialised educational provision *might* be a better option when it comes to reducing the risk of victimisation/bullying perhaps also alongside other important issues [5], but in the real-world where such provisions are seemingly not able to keep up with demand, there are often great difficulties in accessing such places. I also wouldn't want to give any sweeping generalised position statement about such resources being worry-free either. They aren't.

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[1] Chan KL. et al. Associating disabilities, school environments, and child victimization. Child Abuse Negl. 2018 Jul 5;83:21-30.

[2] Novin S. et al. Bidirectional relationships between bullying, victimization and emotion experience in boys with and without autism. Autism. 2018 Aug 3:1362361318787446.

[3] Hodgins Z. et al. Brief Report: Do You See What I See? The Perception of Bullying in Male Adolescents with Autism Spectrum Disorder. J Autism Dev Disord. 2018. Aug 31.

[4] Grossman RB. et al. Perceptions of self and other: Social judgments and gaze patterns to videos of adolescents with and without autism spectrum disorder. Autism. 2018. July 17.

[5] Adams D. et al. School-related anxiety symptomatology in a community sample of primary-school-aged children on the autism spectrum. Journal of School Psychology. 2018; 70: 64-73.

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"aggressive behaviour is not a choice for children with autism": a legal decision with implications...

The quote heading this post - "aggressive behaviour is not a choice for children with autism" - reflects a legal ruling rather than a piece of peer-reviewed research that more typically appears on this blog. The ruling, which was reported in several media outlets (see here and see here), concerns an appeal over "a 13-year-old boy with special educational needs who had been excluded from school because of aggressive behaviour that was linked to his autism."

The details of the case concern various incidents where the boy - referred to as 'L' - struck a teaching assistant with a ruler as well as pulling her hair and punching her. As a result, the school gave L a one-and-a-half day exclusion. The exclusion was challenged on the basis that L was being denied an education as a result, in contravention of his human rights. The judge agreed and deemed the exclusion discriminatory on the basis that the presentation of such aggression was 'not a choice' but instead his "behaviour in school is a manifestation of the very condition which calls for special educational provision to be made." The National Autistic Society (NAS) here in Blighty was involved in bringing this appeal and have highlighted what it means: "all schools must make sure they have made appropriate adjustments for autistic children, or those with other disabilities, before they can resort to exclusion."

Of course this is all good news for children on the autism spectrum and their parents. It stresses that school exclusion should always be a tool of last resort as enshrined in law. It means that such 'challenging behaviours' should always be investigated as a 'sign of unmet need' and appropriate provision put in place to 'work through and manage' rather than exclude as a first reaction. This is really important and will influence many, many futures; hopefully also reversing a worrying trend (see here). It also means that schools excluding pupils or trying to exclude pupils perhaps on the basis of "their results not counting against the school" or similar sentiments, have been given notice...

But there is another side to this coin, and one that may also have equally important long-term repercussions for autism and the autism spectrum: aggression or aggressive behaviour is now inextricably *linked* to autism. And the removal of the word 'choice' from such 'tendency to physical abuse' behaviour - "through no fault of their own... akin to a spasmodic reflex" - starts to place such actions and behaviours in law in a similar position to that of various other developmental and psychiatric labels. 'Vulnerability' it seems, continues to retain it's relevance to autism (see here).

Not to carry on with casting a dark cloud over such a ruling, there is another group of people often forgotten in such cases for whom such a judgement will also likely have an important effect: teachers and teaching assistants who are often working at the 'sharp end'. Indeed, in one of the news reports on this case, there are some important points made by a union representative: "school staff members are attacked at work on a daily basis - from verbal abuse, to being spat at, kicked and punched. But they love their jobs, love the kids and want to carry on doing their best for the children. They understand these pupils can lash out and violent incidents can occur. All they ask is their school backs them up when it does happen - and takes the common sense steps needed to protect them." Such a ruling is unlikely to aid in the recruitment and retention of teaching and support staff who, just as anyone else in any other profession, also have enshrined rights at work when it comes to their health, safety and wellbeing. And without an appropriate intake of such often under-paid, under-appreciated staff, the education system, including that relevant to special educational needs, can only be put under even more stress and strain coupled to the current funding issues. A vicious cycle continues and is only likely to accelerate (see here).

Further research aplenty [1] is required on this important topic. Research on how to make school a more welcoming place for all is the primary objective and already implied. Every child deserves a decent education, and school should also be a place where happy memories are made and remembered for a lifetime. It's not an impossible task by any means; there are schools out there catering for various different needs and doing it well, if not in an 'outstanding' capacity. Good practice needs to be shared and shared widely. Minus any 'blame game' indications, such a ruling also means that some further calm and objective discussions and investigations about ways to reduce and minimise acts of physical aggression should at the same time, also be prioritised (see here and see here and see here for some possible research directions). Minus that is any psychobabble explanations, sweeping generalisations or 'one-size-fits-all' sentiments being expressed...

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[1] Brede J. et al. Excluded from school: Autistic students’ experiences of school exclusion and subsequent re-integration into school. Autism. 2017. Nov 9.

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"Learning difficulties linked with winter conception"

Having recently mentioned the BBC headline that makes up the title of this entry in a related post (see here) I'm pleased to be finally able to bring the paper by Daniel Mackay and colleagues [1] (open-access) to your attention.

Observing that in Scotland at least, "that season of conception is strikingly associated with the subsequent risk of special educational needs in the offspring" there are various potential implications to come from such data covering both learning (intellectual) disability and also the autism spectrum.

So, take over 800,000 school children who attended a school in Scotland between 2006 and 2011 and whose data could be linked to maternity records (again, held in Scotland). Examine date of conception as per the formula "date of delivery minus gestational age at delivery plus 2 weeks" and plot "monthly incidence rates of children with special educational needs... by month of conception." Include "special educational needs attributed to intellectual disabilities, dyslexia, other specific learning difficulties, visual impairment, hearing impairment, deafness and blindness individually combined, physical or motor impairments, language or speech disorder, ASD [autism spectrum disorder], and social, emotional, and behavioral difficulties" for a more detailed breakdown of how month of conception might be linked to said labels.

Results: well, I've already mentioned about the 'striking association' that was made between season of conception for starters. The trends across various labels covered under special educational needs (SEN) were remarkably consistent where conception in quarter 1 (January–March) seemed to show a peak in terms of incidence compared with those conceived in quarter 3 (July–September). Even when researchers re-ran the data taking into account only children who were born at 40 weeks gestation (n=246,594), they got pretty much the same results coming back; "suggestive of an environmental exposure that occurs at a critical developmental stage before labor and delivery rather than secondary to seasonal variation in the gestational age at delivery."

So what might account for the possible link between winter conception and the presence of various labels headed under SEN? Well, it's not beyond the realms of possibility that winter, the season of coughs, colds and sneezes might imply some infective agent as potentially exerting an effect. There is a pretty sizeable volume of peer-reviewed literature suggesting that something like maternal influenza might influence offspring behaviour and development [2]. This line of research is all the more convincing given the continued drive to look at the [reprogrammed] maternal immune system during pregnancy and what effects infection might have on it. The maternal pregnancy body as 'environment' eh?

The authors also discuss another potentially equally important factor as also being something to look at: vitamin D. So: "In our study, the incidence of special educational needs peaked among children conceived in February whose mothers would have experienced low levels of ultraviolet B radiation and therefore produced low levels of vitamin D in early pregnancy and experienced higher levels in late pregnancy." Regular readers are probably pretty sick and tired of me going on (and on) about how vitamin D is potentially linked to so much more that just bone health. I was really happy to see that UK Government policy is starting to change when it comes to the 'sunshine' vitamin/hormone (see here) as it's importance is at last being recognised. Bearing in mind that because of their location, the people of Scotland are not exactly blessed with loads of solar radiation conducive to the synthesis of lots of year-round vitamin D, one can see how this stuff might be an important feature of the relationship observed by Mackay et al. But, as per recent headlines, one needs to be a little cautious when it comes to ideas about supplementation...

More research is however implied given that there could be other important factors potentially also at work, although I'd be minded to suggest we already have two important variables with infection and vitamin D.

To close, the UK Office of National Statistics (ONS) has some interesting data on how popular your birthday might be. Mine is rather less popular...

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[1] Mackay DF. et al. Month of Conception and Learning Disabilities: A Record-Linkage Study of 801,592 Children. Am J Epidemiol. 2016 Sep 20.

[2] Cai L. et al. Gestational Influenza Increases the Risk of Psychosis in Adults. Med Chem. 2015;11(7):676-82.

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Mackay DF, Smith GC, Cooper SA, Wood R, King A, Clark DN, & Pell JP (2016). Month of Conception and Learning Disabilities: A Record-Linkage Study of 801,592 Children. American journal of epidemiology PMID: 27651381

UK Millennium Cohort Study: School and the disabled child

Quite recently the BBC News online ran with the headline: "Disabled children's behaviour 'deteriorates at school'". The story revolved around the findings reported by Rebecca Fauth and colleagues [1] (open-access) looking at "the extent to which the associations between disability and behaviour are linked to children’s developmental stage and thus may be ‘grown out of’ as children enter school and move out of the early years". I should add that, at the time of writing, the Fauth paper is described as a 'working paper' and further "Citation of such a paper should account for its provisional character". So noted.

But why Earth, Jor-El? They're primitives...

With apologies for all the quotations included in this entry, participants for this trial were drawn from the UK Millennium Cohort Study (MCS) [2] which has previously reported on the topic of autism [3] - "Pre-diagnostic data showed early health problems differentiated children later diagnosed with autism from non-diagnosed peers" - Mmm.

In the Fauth paper it included over 6000 UK children covering various ages at different times over the course of the study (referred to as 'sweeps'). Children without reported disability were compared against 3 primary groups defined as 'disabled':

• Children with developmental delay (DD) at 9 months of age. This was assessed via "a set of 8 questions... that were taken from the Denver Developmental Screening Test" and "five items from an UK adaptation of the MacArthur Communicative Development Inventories (CDI) were used to identify early communicative gestures".
• Children with a "Long-standing limiting illness [LSLI] at 3, 5 or 7 years". LSLI was defined "if they had an LSLI at one or more of the occasions it was asked between age 3 and age 7" and included various conditions covering 'mental health' and physical health (asthma, type 1 diabetes and vision impairment).
• Children with Special Educational Needs (SEN) at age 7. Those familiar with the UK system will probably already know about SEN, but for those that don't, it covers "those children who need additional support with their learning" (see here). Further: "SEN may relate to learning difficulties or impairments such as hearing loss, ADHD or dyslexia".

Researchers tracked participants looking at various measures covering areas of "children's emotional, relationship and behavioural issues at the ages of three, five and seven" according to the BBC report. Fauth and colleagues list the dependent variables as being derived from "the four ‘problem’ subsets of the parent-reported Strengths and Difficulties Questionnaire (SDQ)". They also took into account various other factors based on family background and constitution, the parent-child relationship (including discipline practices) and child characteristics.

Based on some nifty statistical modelling, the authors reported on a few key points:

• So: "in their early preschool years disabled children do suffer from more challenging expressions of behaviour". 
• With some caveats: "disabled children exhibit a divergent trajectory from the ‘average’ child, showing increases over time in peer problems, hyperactivity and emotional problems, but not for conduct problems".
• Also: "family and individual characteristics that are associated with both disability and behaviour (such as poverty, family structure, cognitive ability and home environment) mediate the effects of disability in these instances".
• The authors talk about sex differences in their results: "overall girls face lower levels of peer, conduct and hyperactivity behavioural problems across the early years than boys". This is perhaps not an unexpected result as any parent with both boys and girls will perhaps tell you. But: "disabled boys consistently demonstrated more hyperactive problems than non disabled boys, and that these differences grew over time for boys with LSLI and SEN". Additionally: "The differences between disabled and non-disabled children is much greater for boys than for girls, and this divergence between disabled and non-disabled boys grows more over time than it does for girls".
• Parenting styles also get a mention in the results: "harsh discipline being consistently associated with higher levels of problem behaviours, and parent-child closeness being linked to lower rates of problem behaviours". With disability in mind however, the authors saw: "very little evidence of parenting moderating the relationship between disability and problem behaviours, either at age 3 or over time".

I should also add that when it came to looking at developmental delay (DD) the authors noted: "the developmental trajectories of children identified as DD did not diverge from those without DD" although measurement of peer and hyperactivity issues for example, did still not 'close the gap' compared with non-DD participants.

The authors conclude: "Child behavioural difficulties can have far reaching consequences and hence, without appropriate support or intervention, young disabled children may face an accumulation of adverse consequences that serve to compromise their well-being in adolescence and adulthood".

I'm sure you can appreciate how important this work is in terms of both how disability impacts on childhood and what strategies might be put in place to reduce some of the more adverse effects of such issues and lessen any inequality as a result. I note for example, that the BBC write-up of this research has given quite a lot of weight with regards to bullying and the notion that schools should adopt "more stringent anti-bullying strategies for those identified as different" as a result of the findings. I would very much agree with this position; with the caveat of ensuring that children with disability are not further plunged into the 'victim' label as a result of any strategies. This can sometimes itself have consequences for things like future independence and self-esteem; thus helping individuals to help themselves - instilling confidence and resilience and building up feelings of self-worth - is another strand to any discussions (and I have a few ideas on that without making any sweeping generalisations). I'm also wondering whether the debate on home-schooling might also come into play here too?

I'd finally also like to pass some comment about the issue of parenting styles discussed in the findings. Although no large effect appeared to be observed from parenting style and problem behaviours in those with disability, the more general association between harsh parenting style and hyperactive behaviours for example, offers a fascinating opportunity and potentially offers some, more general lessons on child development and rearing. I might add that the parenting style - disability non-event - "does not have much role in modifying the specific trajectories of problem behaviours associated with disability" - might also carrying some lessons for particular conditions like autism for example too (see here).

Now, how about looking at other potential mediators of behaviour such as adequate sleep [4], regular exercise and good nutrition [5] (including a possible role for supplementation)? Too much...?

Music to close. Love Me Like You from the Magic Numbers (although my brood prefer their cameo performance in the Harry Hill Movie...)

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[1] Fauth R. et al. Convergence or divergence? A longitudinal analysis of behaviour problems among disabled and non-disabled children aged 3 to 7 in England. Department of Quantitative Social Science. Institute of Education, University of London. Working Paper No. 14-13. Sept 2014.

[2] Connelly R. & Platt L. Cohort Profile: UK Millennium Cohort Study (MCS). Int J Epidemiol. 2014 Feb 17.

[3] Dillenburger K. et al. he Millennium child with autism: Early childhood trajectories for health, education and economic wellbeing. Dev Neurorehabil. 2014 Oct 7:1-10.

[4] Lee HK. et al. Sleep and cognitive problems in patients with attention-deficit hyperactivity disorder. Neuropsychiatr Dis Treat. 2014 Sep 17;10:1799-805.

[5] Bellisle F. Effects of diet on behaviour and cognition in children. Br J Nutr. 2004 Oct;92 Suppl 2:S227-32.

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Connelly R, & Platt L (2014). Cohort Profile: UK Millennium Cohort Study (MCS). International journal of epidemiology PMID: 24550246

Gut permeability in teens with autism and SEN

Naturally I was going to be interested in the findings of Neil Dalton and colleagues* comparing a measure of gut permeability in teenagers (well, those aged 10-14 years old) diagnosed with an autism spectrum disorder (ASD) (n=103) and those with special educational needs (SEN) (n=30).

Regular readers are probably well used to some of my discussions on the possibility of a triad of issues - gut permeability, gut bacteria and immune function - being related to cases of autism. Indeed not so long ago I posted a sort of 'where is research up to' with gut permeability in relation to autism (see here). Already in light of the recent Patterson lab findings on leaky mice guts and immune activation (see here) this megapost is out of date. And now with the Dalton findings it's even more out of date, such is the rapidity of scientific research (and the responsiveness of blogging).

Anyhow, back to the Dalton findings. Well, I've got to really start with a quote from their study: "no statistically significant group difference in small intestine permeability in a population cohort-derived group of children with ASD compared with a control group with SEN". This was based on quite a nice participant number of teens (yes, I'll mention that again) where gut permeability was "assessed by measuring the urine lactulose/mannitol (L/M) recovery ratio by electrospray mass spectrometry-mass spectrometry". That mass spectrometry (MS) mention adds some significant credibility to the detection methods used to assay for those markers of intestinal permeability.

That being said, the devil is in the detail when it comes to the study findings outside the group comparisons between autism and SEN participants. So: "Eleven children (9/103 = 8.7% ASD and 2/30 = 6.7% SEN) had L/M recovery ratio > 0.03". L/M recovery ratios refers to the amount of lactulose and mannitol sugars recovered in urine generally suggested to be below 0.03 to be a 'normal' result (see here). In effect, 8.7% of the children with autism in the Dalton cohort presented with leaky gut.

I have to say that I am a little bit surprised by the Dalton results and how much they contrast with the other work in this area particularly the de Magistris findings** in terms of the percentage of children showing abnormal gut permeability (36% vs. 8%). One might assume that there are potential population differences (UK vs. Italy) or that even age at gut permeability analysis might be an issues. Realising that use of a gluten- and casein-free (GFCF) diet also seems to impact on gut permeability issues (as was perhaps the cases when considering the Robertson paper***) is another potential place to look for reasons for the disparity across the results. If I also had to ask one further thing about the Dalton paper, it would be to have included a typically-developing group alongside their autism and SEN cohorts so we could frame the results with previous data.

In terms of the publication team and very possibly the cohort used for this study, I'm not altogether sure but I think we might have already heard something about these participants insofar as that 'functional bowel problems do seem to be present in autism' work published by Chandler and colleagues earlier this year (see here). I base that on the single result of a participant with autism showing a result representative of "more definitely pathological" gut hyperpermeability (leaky gut) and being subsequently presenting with "undiagnosed asymptomatic celiac disease". Indeed, 1 out of 103 teens with autism presenting with autism is not a dissimilar figure from other work****; bearing in mind the Ludvigsson paper on 'not quite coeliac disease' but something else being potentially related to autism (see here).

So, yet again, more data suggesting that when it comes to gut permeability, autism (at least some cases of autism) is much more deserving of further inquiry. That also 6.7% of the small participant group with SEN also showed potential issues with a leaky gut might also be an important area of future investigation.

Now about zonulin - any takers for a study on that molecule and autism?

[Update: January 2014. Thanks to the wonder that is PubMed Commons, I've transmitted some of my thoughts on this paper to the PubMed entry: http://www.ncbi.nlm.nih.gov/pubmed/24339339].

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* Dalton N. et al. Gut Permeability in Autism Spectrum Disorders. Autism Research. 2013. Dec 12. 10.1002/aur.1350

** de Magistris L. et al. Alterations of the Intestinal Barrier in Patients With Autism Spectrum Disorders and in Their First-degree Relatives. J Pediatr Gastroenterol Nutr. 2010 Oct;51(4):418-24.

*** Robertson MA. et al. Intestinal permeability and glucagon-like peptide-2 in children with autism: a controlled pilot study. J Autism Dev Disord. 2008 Jul;38(6):1066-71.

**** Batista IC. et al. Autism spectrum disorder and celiac disease: no evidence for a link. Arq Neuropsiquiatr. 2012 Jan;70(1):28-33.

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Neil Dalton, Susie Chandler, Charles Turner, Tony Charman, Andrew Pickles, Tom Loucas, Emily Simonoff, Peter Sullivan, & Gillian Baird (2013). Gut Permeability in Autism Spectrum Disorders Autism Research DOI: 10.1002/aur.1350

Autism and residential placement

It's going to be a bit of an odd blog post this one as I muse over the results reported by McGill & Poynter* on the cost of residential placement for those diagnosed with an intellectual disability (ID). Odd because I'm going to be bringing in a little bit of politics - or at least UK Government legislation - and how this intersects with current financial policy. Hopefully you'll stay tuned though as I try and remain true to the aims of this blog (autism research and other musings).

I can't say I know a great deal about the provision of residential services for people with IDs. Through some contact with a local provider of such services for young people and older adults with autism, I've picked up snippets of what's involved and indeed the various processes and red-tape to be taken on board. All I'll say is that it's not as easy as you might think and indeed neither should it be in light of recent events at Winterbourne View here in the UK.

The McGill paper details a few important things:

• The aim of the study was to determine which factors most strongly contribute to the highest financial costs of placements for people with an ID.
• Bearing in mind the study was conducted in probably the most expensive part of the UK to live and work (South-East England), the average placement was estimated to cost £172,000 per year (about US$275,000). 
• To quote: "Young, male adults with learning disability, challenging behaviour and/or autism continue to receive very high cost residential support, often in out-of-area residential care". This was indicative of the fact that (a) quite a few people with IDs cannot be readily cared for in their own home, (b) indeed quite a few people with IDs can't even be cared for in the vicinity of where they were born and/are normally resident, and (c) part of the reason why residential placement is provided is because of the presence and impact of challenging behaviours (often with autism as a diagnosis). This last point on the impact of challenging behaviours fits quite well into the findings of Hodgetts and colleagues** (thanks Natasa) and how one facet of challenging behaviours in cases of autism, aggression, can have profound effects on families and caregivers (the possible causes of such aggression have been debated in a previous post).

This is not the first time that such provision has been the topic of scientific investigation as per papers like this one from Allen and colleagues*** who seemed to have arrived at similar conclusions with regards to the factors influencing the use of out-of-area residential care (autism, challenging behaviours). I don't think that this is a big surprise to anyone really - the more complicated and severe the presentation of symptoms, the greater the need for specialist, residential care and onward the higher the costs in order to provide that care. This outside of issues like aging and the question that no parent really wants to think about: what happens to my child when I'm gone?

I did say that I would bring a little politics into this post and so I am by introducing some of the provisions of the UK Autism Act 2009. I've briefly touched upon the Autism Act in previous posts (see here for example) and how as well as being the first ever disability-specific legislation in the UK, the Act road-maps what the State must offer for adults with autism including: (i) an assessment of needs, (ii) transition planning from childhood to adulthood, and (iii) planning in relation to the provision of relevant services.

It all sounds pretty good doesn't it? That and the changes to UK/English SEN provision, now (or soon) enabling parents to have a far greater say in how budgets for their child are spent and also getting rid of the cliff-edge that was being 16-years of age where services now stretch up to the age of 25 years for those in further education. Looking at all this on paper, I actually am very proud that old Blighty is taking a lead on these issues.

Not to rain on the parade however, but legislation and Politicians talking the talk is one thing, practical implementation and ensuring the funds are available to fulfil promises and commitments is another. Indeed a few stories in the press quite recently seem to unravel the purposes of why these policies have been set up. So this article in TES magazine paints a rather different picture of transition, and this article in the Guardian on what might potentially happen to specialist FE colleges in this brave new world. Indeed even some of the service providers are battling under-funding issues as per this fairly recent story (something I've heard about before). Of course I don't need to remind anyone about the current financial climate we are all faced with and for viewers (hopefully) reading this in 2020 or 2030, it is currently all rather messy. Councils and local authorities are cutting back and at the same time having to hold services and even improve them. Rather them than me.

What's the take home message from this post? Well, as per other posts, and without trying to turn people into statistics, autism costs in terms of provision and care, and the more challenging the presentation, the more the costs rise. Here in the UK we're doing pretty well in terms of legislation and getting the rules and regulations more into line with how the real world looks where autism is concerned and trying to ensure that particularly those with very complex needs are appropriately catered for by the State. I actually know a few families who have already put things like the Autism Act to good use with their children's future in mind. That being said, there seem like there are enough loop-holes (if I can use that term) present so that things still don't necessarily run smoothly when planning transition and specialist care if and when required.

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* McGill P. & Poynter J. High cost residential placements for adults with intellectual disabilities. J Appl Res Intellect Disabil. 2012; 25: 584-587.

** Hodgetts S. et al. Home sweet home? Families’ experiences with aggression in children With autism spectrum disorders. Focus Autism Other Dev Disabl. January 2013.

*** Allen DG. et al. Predictors, costs and characteristics of out of area placement for people with intellectual disability and challenging behaviour. J Intellect Disabil Res. 2007; 51: 409-416.

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McGill P, & Poynter J (2012). High cost residential placements for adults with intellectual disabilities. Journal of applied research in intellectual disabilities : JARID, 25 (6), 584-7 PMID: 23055291

Gestational age at delivery and special educational need

An article by Boyle and colleagues* (full-text) published in the BMJ provided some food for thought recently with the conclusion that even babies born at what would be considered term (37-38 weeks) may suffer from poorer health than those born at 39 - 41 weeks. To me this seems like a very narrow window when it comes to something like birth timing and future health outcomes bearing in mind what risk means and the myriad of potential confounding variables.

Autism is not specifically mentioned in the Boyle article but nevertheless there is some opinion on a possible relationship between gestational time and associated risk. Indeed, I don't know about you but to me it seems like almost every week a new study is published suggesting that adverse conditions at birth might place a person at elevated risk of developing an autism spectrum condition. OK perhaps I over-exaggerate with the 'every week' bit but certainly this is a recurring theme. As if to prove a point take a look at this paper recently published by Movsas and Paneth** on gestational age and symptom severity in autism.

There are other examples suggesting that low birth weight increases the risk, breech presentation, planned caesarean section, hyperbilirubinema... the list goes on. Indeed so numerous are the factors, studies and accompanying media reports that I very often don't even read them in their entirety anymore given the wealth of evidence that is being built up around our entrance into the world.

On the one hand, in a world full of questions about autism - its aetiologies (plural) and natures - such reports have contributed to a valuable area of research with regards to risk and also potentially mechanisms pertinent/contributory to at least some cases. With a condition which has by far raised more questions than science has currently answered, these kinds of 'pointers' might turn out to be important ones.

On the other hand, there does seem to be a tendency to present this relationship slightly out of context; in that autism receives all the attention in relation to something like premature/pre-term babies yet at the expense of a much larger relationship between something like birth dates and special educational needs (SEN) as a whole.

To illustrate this point, my attention turned to quite a powerful study published a few years back by MacKay and colleagues** (full-text) which looked at the rate of SEN based on population registry data where detailed birth data was also present. I should at this point describe a few details about how things worked.

The study was conducted in Scotland which, at the moment, is still part of the United Kingdom (UK). For those unfamiliar with UK healthcare system, we have the National Health Service (NHS) which is paid for through direct taxation and currently means that all citizens, irrespective of income or status, have a right to free healthcare at the point of need. From cradle to grave, each person has a unique NHS number, which alongside some quite copious amounts of note-taking, provides an impressive bank of health information about a person. Health services often overlap with other areas such as social and educational services (most of the time) which can form quite a detailed picture of a citizen as evidence by the Child Health Profiles reports for example which are accessible to all and provide a wealth of information. Having experienced first-hand how much information is gathered at birth and the early years, I can vouch for this being a pretty good system.

In addition, I quote from the study: "Under the Special Educational Needs and Disability Act of 2001, both schools and local education authorities in the United Kingdom have a statutory duty to identify, assess, and make provision for children with SEN". SEN covers quite a lot of diagnostic ground including learning disability, autism spectrum conditions, ADHD, dyslexia and dyspraxia.

So with these details in mind, the study:

• Based on a large school-aged population covering 19 Scottish local authority areas, details of 514,188 children above 4 years and below 19 years of age were included for study.
• School census data showing SEN status was linked to the Scottish Morbidity Record (SM2) via birth certificate data.
• Complete data was available for 362,688 children of whom 17,784 (4.9%) had a record of SEN.
• In amongst the large amount of results obtained, a few key points were noted including: low birth weight (<2500 g) was associated with an increased risk of subsequent SEN (unadjusted odds ratio [OR] 2.22). This finding was linked to the primary finding that preterm delivery also correlated with risk of SEN, with extreme prematurity (24-27 weeks) carrying the greatest risk (OR = 6.92) steadily declining as children were born closer to their due date but then increasing for infants born overtime after their due date (42 weeks).
• Importantly, whilst preterm births (<37 weeks) increased the risk of SEN, only a relatively small proportion of SEN was linked to prematurity (5.3%) compared with SEN with a history of 39 weeks gestation (1.7%). 
• As per the description of SEN, autism as a diagnosis is included. Having said that, no specific data is provided on the distribution of particular diagnoses in the presented dataset so we can't readily ascertain any specific relationship between autism diagnoses and preterm birth from the current paper.

If you have a bit of time free and are interested in this kind of study, I would encourage you to have a look through the MacKay article in its entirety. For me, the important point to take from this study is that autism, some cases of autism, may very well be linked to preterm birth and onward to factors such as birth weight but such a relationship does not appear to be exclusive to autism and might not necessarily take into account other SEN diagnoses working as comorbidities. Perhaps a smaller detail is that with the current lack of a national autism register here in the UK, SEN status with a focus on autism might be a rough-and-ready way to provide a figure on autism rates at least in the UK pediatric population?

To finish, my car journeys are currently filled with the sound of the Beautiful South and the line - She's a PhD in “I told you so,” you've a knighthood in “I'm not listening” as featured in the song Don't marry her (the clean version).

* Boyle EM. et al. Effects of gestational age at birth on health outcomes at 3 and 5 years of age: population based cohort study. BMJ. March 2012
DOI: 10.1136/bmj.e896

** Movsas TZ. & Paneth N. The effect of gestational age on symptom severity in children with autism spectrum disorder. JADD. March 2012.

*** MacKay DF. et al. Gestational Age at Delivery and Special Educational Need: Retrospective Cohort Study of 407,503 Schoolchildren. PLoS ONE. 2010; 7: e1000289.
DOI: 10.1371/journal.pmed.1000289