By John Stone

Return of the hidden hoard. Where are the autism elderly? They must be there somewhere! According to  an article last year in the Lancet:

Rates of diagnosed autism in children/young people were much higher than in adults/older adults. As of 2018, 2.94% of 10- to 14-year-olds had a diagnosis (1 in 34), vs. 0.02% aged 70+ (1 in 6000). Exploratory projections based on these data suggest that, as of 2018, 463,500 people (0.82% of the English population) may have been diagnosed autistic, and between 435,700 and 1,197,300 may be autistic and undiagnosed (59–72% of autistic people, 0.77%–2.12% of the English population).

When I wrote to the British government CMO, Dame Sally Davies, at the beginning 2019  I pointed out that the “hidden hoard” projections of 20 years before - when they first started playing that game - were much smaller than the present. For instance Eric Fombonne (and we didn’t trust Eric) stated in 1999:

Over 4 million subjects were surveyed; 1533 subjects with autism were identified. The methodological characteristics of each study are summarized, including case definition, case-finding procedures, participation rates and precision achieved. Across surveys, the median prevalence estimate was 5.2/10000. Half the surveys had 95% confidence intervals consistent with population estimates of 5.4-5.5/10000…Based on recent surveys, a minimum estimate of 18.7/10000 for all forms of pervasive developmental disorders was derived, which outlines the needs in special services for a large group of children.”

I wrote to the CMO:

This was one of the papers that the DHSC sent to reassure me when I first expressed concern about the situation in Haringey in 2000. But this is a whole order of magnitude different from the current situation, while attempts to locate the missing numbers (as opposed to the occasional case) in a population now over the age of 30 have signally failed. In 2013, in contrast to National Autistic Society projections, of 700,000 cases across the entire population the DWP knew of only 129,000 who were likely preponderantly minors …Brugha’s figure for adults in 2009 was extravagantly extrapolated, based on flawed diagnostic methodology and the hypothesis that they had somehow missed nearly 3/4s of the cases before weighting, and was downgraded by National Statistics to the status of “experimental statistics” in 2016…, while his 2014 data was published in 2016 as only “experimental statistics” [29]. The “they must be there somewhere” line has been playing for two decades without the cases ever being found. But if they were there, they would be a massively dependent and expensive population and they would not have to be looked for.

The only conclusion to be drawn is that while the DHSC has for two decades been trying dispel the notion that autism is rising (and perhaps believing it themselves), a steady trickle of cases has turned into a stream, has turned into a flood. Twenty years ago, the rate was 5 in 10,000, 10 in 10,000, just possibly 20 in 10,000 but now it is 290 in 10,000 and going up. The rhetoric of “more recognition” continues (has been very effective as a public relations strategy), but we are no longer looking at the same thing. These costs will inevitably eclipse that of the care of the elderly, if they have not already. And the question is very much why as this population catastrophe has unfolded - at immeasurable financial cost to the nation, immeasurable personal cost to huge numbers of citizens - has the DHSC just stood by year after year telling everyone that nothing is happening? If the rise is real – and the hard data tells us it is all too real – it is something the DHSC are doing or not doing which is responsible. The “echo chambers” of social media are as nothing compared with the echo chambers of public health.

And, of course, they were looking at the 2018 data when the rate is at least twice as bad now (6.5% among 12-14 year olds in Northern Ireland in 2023 while in 2024 they failed to produce a report). I am afraid they were out of date: using 2023 data rather than 2018 data they needed to find more than twice as many autistic adults to maintain the fiction that autism trends were not really rising!

John Stone is UK Editor for Age of Autism.

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