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

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

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

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

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

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

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

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

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

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

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

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On staff training in the UK autism services sector

I tread carefully in discussing the findings reported by Karola Dillenburger and colleagues [1] (open-access) on the question of "knowledge and training with regards to autism" received by "health, social care, and education staff who work within the statutory autism services sector in the UK." The observation that "an acute lack of autism-specific training that has detrimental impacts" was apparent is a worrying sign indeed.

Although not intimately involved in the autism services sector, I do have some knowledge of the provision of education and other services for people on the autism spectrum as a consequence of my employer. Although perhaps having a biased opinion, I can testify to the benefits of good teaching and service provision with caring staff - 'friends' as I think most people would like to call them - making a real difference to people's lives and prospects. But as many people might remember, not every service provision is seemingly so inclined...

With the aim of surveying both professionals and service users to elucidate "the lived experience of those who use, and those who are tasked with providing, autism services" researchers gathered data via various different tools and sources pertinent to ascertaining the knowledge and training of autism among providers and service users views on staff training.

Results: well, I guess the term 'must try harder' is probably the best overview that Dillenburger et al give based on their cohort made up of nearly 800 professionals "from health, social care, and education" and a significantly smaller group of people with autism and their families. A couple of sentences kinda sum up the state of things: "A total of n = 175 health and social care (HCS) professionals responded to an open question about their future autism training needs, with only a very small minority (n = 12) having no suggestions or being happy with the training that had received. The vast majority (n = 163) felt that more training was needed." In other words, quite a bit more needs to be done for the carers and educators of those with autism to aid their caring and educating roles and said training should perhaps be on-going.

A few other points are worth mentioning too. So: "The survey showed that nearly half of the professional participants knew someone with autism personally." Acknowledging the old saying that is 'if you've met one person with autism, you've met one person with autism' and how sweeping generalisations are not required, the authors go on to say: "This makes a farce of brief 1–2 h autism awareness-raising sessions directed towards professionals who work in the autism field." Ouch, is the word that springs to mind.

Also: "service user interviews identified the lack of adequate staff training, inadequate services, and lack of support for individuals with autism and their caregivers and saw that this potentially contributed adversely to their mental health issues." I don't think I need to expand on this any further aside from suggesting that these issues when combined with a lack of resources and tightening budgets do not exactly make for a great portrait of how society helps some of its most vulnerable members.

And finally, the authors don't mince their words when it comes to the effects of a lack of appropriate autism-specific training et al: "Findings reported here show that in a culture where a lack of apposite training is the norm, those who attend minimal ‘autism training’ are regarded as ‘autism experts’ in the eyes of others who know even less. Dangerously, they may even become the trainers for the next generation. In reality, they are the one-eyed wo/man in ‘the land of the blind'."

What more can I say?

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[1] Dillenburger K. et al. Staff Training in Autism: The One-Eyed Wo/Man…. Int J Environ Res Public Health. 2016 Jul 16;13(7). pii: E716.

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Dillenburger K, McKerr L, Jordan JA, & Keenan M (2016). Staff Training in Autism: The One-Eyed Wo/Man…. International journal of environmental research and public health, 13 (7) PMID: 27438846

The bean counters of autism (part 2)

Consider this post an update to my previous discussions on the economics of the autism spectrum disorders (ASDs) published a few years back (see here). The interest in 'what autism costs' from a monetary point of view has been rekindled following quite a bit of media discussion on the study by Ariane Buescher and colleagues [1] (open-access here) including a piece posted on the BBC website and a write-up in the Guardian newspaper with quite a sensational headline: Study says cost of autism more than cancer, strokes and heart disease. The Buescher paper concluded that there was a "substantial direct and indirect economic effect of ASDs". An accompanying editorial from Shattuck & Roux [2] on the Buescher paper is also worth a read too.

The main points from the Buescher paper are pretty visible in the paper and accompanying media, but include:

• The estimated lifetime costs of supporting someone with autism and accompanying learning disability (intellectual disability) comes in at about £1.5 million here in the UK and $2.4 million in the United States. For those with no accompanying learning disability, the costs are estimated at £900,000 in the UK and $1.4 million in the US.
• The total estimated cost of autism in the UK is roundabout £32bn per year mostly associated with adult costs. Indeed, with only £3bn of that £32bn estimated to be directed to children with autism, there is a rather large gap very much apparent, bearing in mind that "individual productivity loss" (lost employment) made up a sizable proportion of the adult cost estimate. This is a hot topic in autism at the moment.
• Medical costs also get a mention and the fact that: "Medical costs were much higher for adults than for children".
• Some discussion is also made of the amount of money dedicated to autism research. The Guardian report on this paper notes: "In the UK, £4m per year is spent on autism research, compared to £590m on cancer, £169m on heart disease and £32m on stroke research". I have to say that I'm not a great believer in making such comparisons given that there is quite a difference between something like autism and what falls under the heading of heart disease or cancer for example. Although perhaps placing a person at some [variable] increased risk of early mortality through comorbidity or the issue of wandering, autism is not for example, generally a life-limiting condition as the other diagnoses can sometimes be. Nevertheless, £4m spent annually on autism research here in the UK is a meagre sum; about the same as some football (soccer) transfers if I were to use another comparator.

There is always a danger that such studies of finances risk stigmatising a condition and resigning individuals - the many faces behind these figures - merely to statistics. In these days of continued austerity, the sum of £32bn is no small amount but one has to be slightly cautious about the figures arrived at (mostly estimates) and in what context such sums of money are used. I can speak from seeing one of the adult services available here in the UK that costs can be high but these are often offset against providing educational, residential and medical services which can very much positively impact on a person and their quality of life, and by proxy, the extended family too. Parents, siblings and other family members are more often than not tax payers (and voters!), and in the spirit of at least one arm of our welfare system here in the UK: availability from cradle to the grave and free at the point of need (see here) are important concepts to bear in mind.

I note that the inequality in autism research vs. autism services spending has already surfaced in some of the discussions on the Buescher paper. An "unacceptable imbalance" is the way one commentator put it complete with stark comparison of research spend vs. services spend. My mind wanders back to the recent Pellicano paper on autism research priorities here in the UK (see here) and how the identified goal of research making a difference to day-to-day life figured so heavily in that consultation. Again, I think we have to be a little bit cautious here in terms of the aims and objectives of autism research and the territory where such discussions can potentially head into. I would like to think that alongside the noble sentiments of a research agenda making an impact on day-to-day living, the Buescher findings might also open up wider discussions about things like the notion of plural autisms and onwards how research could better start taking into account factors like best responders to certain interventions. One might also think that a greater focus on differing developmental trajectories including those 'optimal outcomers' would be more forthcoming if one truly wanted to see how autism may not necessarily just be defined by an economic cost or financial burden.

"Parental productivity loss" is also mentioned in the paper, and an important concept this is too. Other media pieces on the Buescher paper talk about the effect of caring for a child or children with autism, and how jobs and careers are sometimes left behind [3]. I don't say this to further stigmatise or apportion blame, but the reality is that for some parents, quite a few parents [4], quitting employment in order to care for a child/adult happens and happens often. This can have obvious financial effects on the family and perhaps just as important, might also influence issues like stress levels too.

There is little more to say about the Buescher study and it's implications. I would perhaps reiterate that whilst the headlines of this study talk about counting costs and the "search for effective interventions that make best use of scarce societal resources", one should not lose sight of the fact that behind the figures and sums are real people and real families often struggling with severe financial hardship on top of various other challenges. I do believe that as a society we are becoming better at helping those with autism and their families to live rich and rewarding lives but would prefer not to see too many more studies just boiling autism down to an economic cost.

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[1] Buescher AVS. et al. Costs of Autism Spectrum Disorders in the United Kingdom and the United States. JAMA Pediatrics. 2014. June 9.

[2] Shattuck PT. & Roux AM. Autism: Moving Toward an Innovation and Investment Mindset. JAMA Pediatrics. 2014. June 9.

[3] Montes G. & Halterman JS. Child care problems and employment among families with preschool-aged children with autism in the United States. Pediatrics. 2008 Jul;122(1):e202-8.

[4] Ouyang L. et al. A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability. Res Dev Disabil. 2014 Jul;35(7):1518-27.

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Ariane V. S. Buescher, Zuleyha Cidav, Martin Knapp, & David S. Mandell (2014). Costs of Autism Spectrum Disorders in the United Kingdom and the United States JAMA Pediatrics : 10.1001/jamapediatrics.2014.210