Iceberg! Have we reached a tipping point in autism numbers and assessment referrals?

Sorry. I really am. I'm back at the autism research blogging yet again, twice in a week. I know some people will be unhappy about that (I can hear the Twitterer cries already: 'keep yer bloody mouth shut!') but hopefully some won't be so unhappy. But writing this on a nice sunny March Sunday evening with a rerun of Titanic playing on the telly, I'm gonna talk about whether or not we've just hit the iceberg when it comes to US autism (estimated) prevalence (and those from elsewhere) and the huge backlog of autism referrals that's been making news here in Blighty aka dear old England. I'll also come clean and mention that I actually do like the film Titanic. There I said it. 

I appreciate that my use of the word 'iceberg' in the context of this blog is not likely to sit well with some people. How dare I talk about icebergs in the context of autism prevalence and such like? Well, I dare because right now there's a lot of people who are genuinely concerned that more than ever we might have started to head into and indeed, already started to scrape past, an iceberg that's been on the horizon for a number of years. And in the current climate of post-pandemic financial and resource pressures, we haven't exactly got the strongest of hulls in this societal ship in which we're all passengers on. 

So, last week we had the estimated autism prevalence figures for 8-year olds in the United States from the CDC (see here). Actually we had another set of (estimated) figures relating to 4-year olds too (see here). The headline figure: well, words like 'all-time high' have been used to cover the 1 in 36 8-year olds estimated to have autism or an autism spectrum disorder (ASD). As for 4-year olds, and as per other reports (see here), 1 in 47 4-year olds was the headline figure, a leap from previous reports for this age group (1 in 59 in 2018). Both sets of figures chart the estimated numbers of cases of childhood autism and illustrate the ever upward trend that we've been seeing over the past few decades in the US and beyond.

Most press coverage of the CDC data have not sugar-coated it. Yes, there's been talk about how racial disparities in screening and assessment have been reduced in the recent figures and that's a good thing. There's also talk about the (subtly) declining male:female ratio which again, represents good progress in detection and identification. But then the conversations move to the need to provide suitable services. Y'know things like education, social and health services, and this is where the tone gets a little more serious as per the realisation that there's probably not enough suitable or appropriate services for everyone, and what services there currently are, are probably going to become even more scarce as more people need them. As an aside it's interesting too that this time around, some discussions on the new CDC figures have basically poo-pooed the whole 'it's all better awareness' arguments: "This is not just a phenomenon of becoming more sensitive to subtly impaired kids" according to one very senior person intricately involved in the CDC process of autism counting. Progress indeed given the amount of times that argument has been used, fairly unscientifically, in the past.

On this side of the Pond, I think we're starting to really see that process of 'lack of suitable services' playing out in real time. We - the UK we - are still waiting for a truly national autism prevalence initiative but we have some good counting processes in place in relation to countries of the UK like Northern Ireland and their forward-thinking in collecting and publishing school-aged autism prevalence data (see here). Northern Ireland is, I think, due to report in a few weeks time but the last time around the prevalence of autism in school-aged children came it at 1 in 21 children (see here) or 4.7% of school-aged children with autism in 2021/2022. I also happened to stumble on some other, more England-based data recently (see here) that mentioned that "2.84% of 10-14-year olds were diagnosed (1 in 35)." Obviously, one has to be a little careful with that last statistic. What this means is that the latest CDC figures for the US are not an isolated incident. They're more likely part of a global trend where the old 1% prevalence figure is completely out of sight in the rear view mirror.

As to that 'lack of suitable services'? Loads of examples to pick from. Take for example the recent BBC news report (see here) on twins, yes twins, both diagnosed with autism (and dare I say autism heading more towards 'profound'), both with EHCPs (education and healthcare plans) yet one twin offered a place at a specialised setting, the other not. The reason: the specialised setting is 'over-subscribed'. Twins. There's loads more other examples like this. Such examples complemented (if that's the right word) by multiple reports of plans to build more and more specialised schools with seemingly little realisation that said schools take a while to be built and then also need to be suitably staffed, which leads us down another potential rabbit hole. Another aside: we have some of the best teaching cupboards (yes, you heard right) in the world here in England (see here).

And if you think things are critical when it comes to resources for those lucky enough to already have a diagnosis, spare a thought for the thousands and thousands of people - predominantly school-aged children - who are waiting just to get on a waiting list for autism assessment (see here). In England alone there's about 140,000 people waiting at the time of writing (see here), again predominantly school-aged children. And now another reality: one particular part of England has recently decided that the huge numbers of people, again predominately children, wanting an autism assessment will be 'triaged' to filter out 'the most needy' (see here). That's triage as in what's normally seen on the battlefield when care is rationed according to those most in need. So children now have to be 'in crisis' before they're put on a list for a referral for autism assessment. We've hit the iceberg, haven't we? 

I don't really know what else to say about all this. Yes, it's great that everyone is getting better at recognising autism. Yes, it's great that more people are being detected and referred for an assessment. We can pat ourselves on the back for that. Unfortunately, as a society we've had our collective heads buried in the sand about what rising numbers of need actually means. And now, it's having real-world implications for many people and their loved ones. 

How many lifeboats did you say we have?

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Maenner MJ, Warren Z, Williams AR, Amoakohene E, Bakian AV, Bilder DA, Durkin MS, Fitzgerald RT, Furnier SM, Hughes MM, Ladd-Acosta CM, McArthur D, Pas ET, Salinas A, Vehorn A, Williams S, Esler A, Grzybowski A, Hall-Lande J, Nguyen RHN, Pierce K, Zahorodny W, Hudson A, Hallas L, Mancilla KC, Patrick M, Shenouda J, Sidwell K, DiRienzo M, Gutierrez J, Spivey MH, Lopez M, Pettygrove S, Schwenk YD, Washington A, Shaw KA. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ. 2023 Mar 24;72(2):1-14. doi: 10.15585/mmwr.ss7202a1. PMID: 36952288.

Shaw KA, Bilder DA, McArthur D, Williams AR, Amoakohene E, Bakian AV, Durkin MS, Fitzgerald RT, Furnier SM, Hughes MM, Pas ET, Salinas A, Warren Z, Williams S, Esler A, Grzybowski A, Ladd-Acosta CM, Patrick M, Zahorodny W, Green KK, Hall-Lande J, Lopez M, Mancilla KC, Nguyen RHN, Pierce K, Schwenk YD, Shenouda J, Sidwell K, Vehorn A, DiRienzo M, Gutierrez J, Hallas L, Hudson A, Spivey MH, Pettygrove S, Washington A, Maenner MJ. Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ. 2023 Mar 24;72(1):1-15. doi: 10.15585/mmwr.ss7201a1. PMID: 36952289.