Friday, 15 June 2018

'What really grinds my gears': a "slight uptick' in the estimated prevalence of autism

For those who watch the sometimes 'cutting' TV show called Family Guy, the first part of the title of today's post - "what really grinds my gears" - will make sense. For those who don't, it represents a TV segment offered to one of the main characters of the series, Peter Griffin, during which he aired increasingly bizarre opinions of things that 'irk' him. At the close, he revealed that just about everything 'grinds his gears'.

Whilst I'm not typically a person that is easily irked (much of my early years irking has dissipated as a result of age and my hobby), I was a little put out by the opening sentence included in the news piece published by Bridget Kuehn [1] talking about the most recent autism estimated prevalence figures published by the US CDC [2] (see here for my take). To quote: "A slight uptick in US cases of autism spectrum disorders (ASDs) was detected in 2014 compared with the years between 2010 and 2012, according to a new CDC report."

It was the use of the word 'slight' that furrowed my brow. And how a 15% increase in the estimated autism prevalence rate in the US over 2 years - translating as a move from an estimated 1 in 66 8-years olds being diagnosed to 1 in 59 8-years olds being diagnosed - is somehow inferred to be less important than it actually was. Words matter.

I know prevalence (and incidence) rates (estimated or actual) when it comes to autism can invoke some often heated discussions. Such debates perhaps tie into wider views held about autism, and whether you're of the opinion that autism has always been with us, or autism is a relatively new 'condition'; whether autism is primarily explained by genetics or whether non-genetic environmental factors play a significant role; whether you view autism as a serious public health issue or are more inclined towards the idea of an 'autistic identity'. I'm sure there are other polar opinions to add, but the end result is that [peer-reviewed] data can sometimes become a secondary consideration when it comes to such views and opinions.

Personally, I go with the data. I go with the data that suggest that autism prevalence is still increasing, and not just in the United States (see here and see here for examples). I go with the associated idea that explanations such as 'increasing awareness' and 'diagnostic substitution' probably play some role in the increase, but don't provide a wholly intellectually satisfying explanation for the increasing numbers (see here and see here). I go with the idea that alongside increasing numbers of cases of autism being diagnosed, so more needs to be done in terms of the provision of educational and social support being offered for an often complicated clinical pictures (see here). I also go with the idea that research questions need to be asked (and answered) about what factors could be driving the remarkable increase in autism over the past couple of decades without fear or favour.

I also go with the idea that there needs to be a bit more urgency in the response to such figures. I'm not talking about the use of 'inflammatory' language or soundbites which are bound to make some people nervous or angry. Merely that behind the CDC statistics there are real children and there are families and other loved ones. And they deserve a lot more and a lot better than society is currently providing (see here)...

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[1] Kuehn B. Uptick in Autism. JAMA. 2018 Jun 12;319(22):2264.

[2] Baio J. et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. Morbidity and Mortality Weekly Report (MMWR). 2018; 67(6): 1-23.

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1 comment:

  1. Well said Paul! I completely agree. I was at a genetics and autism conference a while ago in New York City, and it is amazing to me how many scientists (especially geneticists) who are seemingly very sophisticated people believe that the increase in prevalaence does not reflect a real increase in prevalence of dysfunction but instead represents factors such as changes in diagnostic criteria or relatedly picking up cases that had previously been missed. Somebody should do a rigorous study on the prevalence of the most severely affected over time that takes into account changes in diagnostic criteria.

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