Friday 27 September 2019

Autism diagnosis, numbers and politics

It's been a while since I lasted posted on this blog. Apologies to those who've enjoyed my musings but time has been in short supply these past few weeks. But I'm here now...

Today I want to bring to your attention a couple of papers and news items that have caught my eye in the past few weeks. The first is the paper by Eya-Mist Rødgaard and colleagues [1] which garnered quite a bit of media attention (see here). The crux of the Rødgaard findings were that "differences between individuals with autism and those without autism have decreased over time, which may be associated with changes in diagnostic practices." It was a meta-analysis paper and so kinda reiterated what had already been discussed in the peer-reviewed science literature before, in that the autism of today might not necessarily the same as the autism of yesteryear (see here).

Second up is another recent paper from Benjamin Zablotsky and colleagues [2] (a name mentioned a few times on this blog) indicating that the only way is up when it comes to diagnoses of developmental disabilities such as autism. I noted that some interpretations of the Zablotsky results headed down the old 'better awareness' and 'not a true rise' routes (see here) despite the quite astounding increase in cases from "1 in 91 children in 2009 to 1 in 40 in 2017." In any other label / condition / disorder, such a rise would probably provoke some important questioning about why the increase and what factors could be associated with it (including the Rødgaard explanation). Needless to say that children become adults, and quite a lot of those 1 in 40 children are going to require more Government planning and money to ensure that they live good, healthy and productive lives as both children and adults. And just in case you think such a rise is a United States issue only, take a look at the stats for Northern Ireland in recent years (see here and see here) and tell me that there isn't a true rise there either.

Finally a few interesting lay articles have been published in recent weeks which deserve highlighting and debating. The first from neuroscientist and science writer Mo Costandi ruffled some feathers in his critique of the concept of neurodiversity. The by-line to the article said it all: "The movement has good intentions, but it favours the high-functioning and overlooks those who struggle with severe autism." The second article from Steve Silberman tackles a slightly different, but nonetheless related issue, on how "Greta Thunberg became a climate activist not in spite of her autism, but because of it." Both articles, whilst sharing some differences, stress how the label of autism covers a wide, wide variety of presentations and outcome. They also serve to highlight how there is seemingly no way that one can possibly advocate for the entire autism spectrum as some sort of singular label / condition / disability based on the different wants, needs and desires of such a diverse population. The sooner we start to take the plural 'autisms' more seriously, the better for everyone...

To close, no two brains are the same as seen in this 'cool' graphic. In the coming weeks, I'll be talking about a few papers that should be appearing in the peer-reviewed domain that I've been involved in authoring that stress such an important point.


[1] Rødgaard EM. et al. Temporal Changes in Effect Sizes of Studies Comparing Individuals With and Without Autism: A Meta-analysis [published online ahead of print, 2019 Aug 21]. JAMA Psychiatry. 2019;e191956.

[2] Zablotsky B. et al. Prevalence and Trends of Developmental Disabilities among Children in the United States: 2009–2017. Pediatrics. 2019. September.