Wednesday, 16 April 2025

2025: Estimated 1 in 31 8-year old children in the US have autism

 It's here...

Prevalence and Early Identification of Autism Spectrum Disorder Among Children Aged 4 and 8 Years — Autism and Developmental Disabilities Monitoring [ADDM] Network, 16 Sites, United States, 2022 https://www.cdc.gov/mmwr/volumes/74/ss/ss7402a1.htm

Loads of details to sift through in the paper but the headline is that an estimated 1 in 31 8-year old children in the United States (US) in 2022 has autism.

It also provides some details about 4-year olds too and the rather ominous data that in some States, the rate of autism in 4-year olds was higher than that in 8-year olds suggesting that more (estimated) prevalence increases are on the horizon in future prevalence studies. Northern Ireland data for school-aged autism stood at 1 in 20 with autism in 2022-23 (there was no data for 2023-24) so there's a possible inkling of how far it may go and even surpass....

Other information: "Among 5,292 (61.4% of 8,613) children aged 8 years with ASD with information on cognitive ability, 39.6% were classified as having an intellectual disability." So it looks like profound/severe autism is probably more prevalent than the 26% figure previously independently reported by the CDC ADDM. This is another important point because this highlights how the type of autism we've been seeing increasing over the last 30 years or so - the recent press conference held by the US HHS Secretary suggested the increase began back in 1989 - isn't the type of autism that is typically missed. And indeed, it looks like the severity profile of those being diagnosed is getting more and more severe, more and more complicated, after each round of ADDM data.

There's been a fair few media column inches about this already with much more to go. Yet again, the tired argument of 'all better awareness' has been dragged out of the cupboard under the stairs as a primary explanator for the latest figures. Well, better awareness probably does play some role but I'm not sure that its as much as some people believe. Indeed, if you are genuinely convinced that assessment professionals and diagnosticians have previously been so bad at identifying autism - for literally decades - and only now have 'woken up' to what autism looks like, I have some magic beans to sell you...

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Friday, 21 March 2025

The autisms. Now published.

I hope readers might indulge me in this short post as I link to our new paper - March 2025 new - discussing movement from the singular autism label to something a little more real-world: the autisms. From autism to the plural ‘autisms’: evidence from differing aetiologies, developmental trajectories and symptom intensity combinations https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/abs/from-autism-to-the-plural-autisms-evidence-from-differing-aetiologies-developmental-trajectories-and-symptom-intensity-combinations/4D9B0B35DCF03FDBA4E001F7DC9B02D6

Those who know of my incessant droning on about the plural autisms as an attempt to try and accomodate the massive heterogeneity covered under the diagnostic label autism won't be surprised by this publication. The logic is simple: based on three primary 'vectors' covering differences in aetiologies, differences in developmental trajectories and differences in symptom intensities there may be some way to 'compartmentalise' the autisms, hopefully helping both research and practice. The next step is how to organise those autisms...

I'd like to thank my co-authors on this paper and our collaborative efforts to get this paper written and published. I'd also like to thank both the editor and editorial staff at the British Journal of Psychiatry too, who've done a sterling job in helping us to mould this paper into what it became. I'd also like to thank our peer-reviewers - all six of them - who with annonymity, provided some great feedback to us. No, there was no 'Reviewer 2', just lots of really great observations that led to some great discussions and a much better paper as a result.

We're not claiming to know all the answers when it comes to tackling the heterogeneity around the autisms. Just offering one among many potential solutions designed to spark further debate and science. Enjoy.

Wednesday, 19 March 2025

“You don’t die from autism...". Actually, people do.

You don’t die from autism, but from exclusion, and that’s what we’re trying to change” https://en.protothema.gr/2025/03/18/dimitris-papanikolaou-you-dont-die-from-autism-but-from-exclusion-and-thats-what-were-trying-to-change/

Actually people do die from autism. Indeed, one of the biggest killers of particularly young children, often with severe/profound autism and/or who are non-verbal, is a deadly triad: autism, wandering/elopement and drowning. It's killed many people. It's not a topic some like to talk about but, when children and adults are dying, we should be talking more about including an important word: prevention. That deadly triad also happens worldwide including here in the UK: https://www.itv.com/news/granada/2024-01-25/luke-was-such-a-beautiful-soul-says-grieving-mum-of-boy-found-in-river

There are various other ways that a diagnosis of autism seems to be a risk factor for early mortality: suicide, diagnostic overshadowing (particularly for those who are non-verbal), the effects from various over-represented comorbidity such as epilepsy (including epilepsy as part of syndromic autism), and more. Another important issue that overlaps with the risks from autism is that of assissted dying, a topic that is currently being discussed here in the UK: Euthanasia and physician-assisted suicide in people with intellectual disabilities and/or autism spectrum disorders: investigation of 39 Dutch case reports (2012-2021) https://pubmed.ncbi.nlm.nih.gov/37218567/

As a collective, such issues tell us that autism is, for some, a diagnosis people die from. To say otherwise erases those deaths.

Wednesday, 12 March 2025

1 in 20 school children with autism in the Republic of Ireland: same as in Northern Ireland (for now)

"Percentage of children diagnosed with autism rises threefold in less than a decade." https://www.irishtimes.com/ireland/education/2025/03/11/one-in-20-irish-schoolchildren-diagnosed-with-autism-a-threefold-rise/

"About one in 20 schoolchildren are being diagnosed with autism, a threefold increase in less than a decade, Department of Education figures show."

And: "Official records show the department has moved from using an estimated autism prevalence rate of 1.5-1.6 per cent among schoolchildren several years ago to 5 per cent."

The Republic of Ireland is now matching Northern Ireland in the (estimated) school-aged childhood autism rate, now at 1 in 20 children in both countries. The caveat being that Northern Ireland is due to report soon on their latest autism in childhood statistics (the 1 in 20 stat is from two years ago).

If it was any other diagnosis where in less than 10 years the rate increased 3-fold, there would be a scramble to find out 'why?' But for various reasons there hasn't been that urgency when it comes to autism. That is, until it hits home with the realisation that there aren't enough specialised school places, or when healthcare for children who often have quite complex needs isn't available or as widespread as it should be, or when social care is basically next to zero and also when governments start asking people to pay more in their taxes to cover financial and resource shortfalls. Then people take note. 

Such increases in autism rates are visible worldwide. Arguments like 'it's all better awareness' are exposed for what they are: bluff. And who suffers most? The children who can't access the education, healthcare and social care they need. And their families who also feel the strain.

And believe it or not, someone actually said to the media that the threefold increase in autism is actually a 'good thing': "A threefold increase in the number of children being diagnosed with autism is a “good thing”, an expert in the condition has said." I wonder if they would say the same when knowing about the dreadful statistics around the deadly triad that is autism, wandering/elopement and drowning? Because I wouldn't.

Sunday, 9 March 2025

US CDC plans to study autism and vaccines: treading carefully

Two important pieces of news went head-to-head recently:

US CDC plans study into vaccines and autism, sources say https://www.reuters.com/business/healthcare-pharmaceuticals/us-cdc-plans-study-into-vaccines-autism-sources-say-2025-03-07/

Second person dies in US measles outbreak https://www.bbc.co.uk/news/articles/cm2nzyjgrwxo

How do we find the middle ground when successful population-wide public health measures like vaccination are pitted against lingering concerns about possible side-effects for a minority? Is there any middle ground that can be reached that will satisfy most and importantly, not interfere with a population-wide medical regime that saves lives?

An interesting quote is also included in that Reuters news piece from the potential next new head of the US National Institutes of Health (NIH): "I don't generally believe there is a link, based on my reading of the literature," Bhattacharya said. "But we do have a sharp rise in autism rates, and I don't think any scientist really knows the cause of it. I would support a broad scientific agenda based on data to get an answer to that."

This is a tricky area to navigate. 

Minus any scaremongering, and bearing in mind that rubella vaccination has for example, probably prevented cases of autism: Congenital rubella syndrome and autism spectrum disorder prevented by rubella vaccination--United States, 2001-2010 https://pubmed.ncbi.nlm.nih.gov/21592401/ the idea that immune functions and mitochondrial issues *might* show involvement for some: Developmental regression and mitochondrial dysfunction in a child with autism https://pmc.ncbi.nlm.nih.gov/articles/PMC2536523/ probably does need further study. The 'Hannah Poling case' provided a roadmap for further investigations, and as Time magazine mentioned: "The case of Hannah Poling, the 9-year-old Georgia girl who, in 2008, received a $1.5 million award when the court agreed that vaccinations contributed to her later-onset autism, rocked the medical community and only worsened the anti-vax panic. But Poling was a special case; she was suffering from an underlying disorder of the mitochondria, or the energy-processing organelle in the cells. This made her vulnerable to any oxidative stress that could, in theory, be caused by vaccines". The question therefore should be whether the Poling case was a 'one-off' or something more widespread, particularly in the context of a diagnosis of regressive autism potentially with mitochondrial disorder as part of that clinical profile?

Going back to rubella and autism - based on the work of Stella Chess and others - another area that might also need more investigation is when vaccines fail to provoke a suitable response in terms of titer levels: Autistic children exhibit undetectable hemagglutination-inhibition antibody titers despite previous rubella vaccination https://pubmed.ncbi.nlm.nih.gov/1036494/ and why. This set within the context that various immune-related findings have been discussed in the context of autism down the years.

There aren't any specific details at the moment around what plan the CDC (potentially) have for re-looking at this issue and who is going to be undertake such research work. Such work, if it actually goes ahead, is going to need to tread a fine line that balances the undoubted population benefits of vaccination against the idea that no medicine is without potential harms to some.

Tuesday, 4 March 2025

Lying and autism: another sweeping generalisation stripped away

Exploring lie frequency and emotional experiences of deceptive decision-making in autistic adults https://journals.sagepub.com/doi/10.1177/13623613251315892

"Fifty-eight non-autistic and fifty-six autistic university students matched on age and gender completed self-report measures of their general lying patterns, how often they lied in the past 24 hours, and whether they would lie across hypothetical scenarios with differing beneficiaries (self, other, group) and motivations (protective, beneficial)."

Results: "The groups did not significantly differ in their general lying behaviour or frequency of lies told over 24 hours."

Another sweeping generalisation about autism peels away. Unless they were lying?

Also: "Future research may benefit from examining autistic deception across numerous social situations as more general lie frequency measures may be insensitive to nuanced population differences."

I'm not sure about the term 'autistic deception' because I don't think deception comes particularly easily to many people with autism, particularly children. I know some would have us believe that 'masking' and 'camouflaging' are widespread across autism, but as per Fombonne's excellent article on that topic: "Because of its association with intended deception, the term camouflage has poor fit with the autism worldhttps://acamh.onlinelibrary.wiley.com/doi/10.1111/jcpp.13296

Indeed, I'm inclined to believe that the ability to lie - which is quite an important cognitive feat - is probably one of a number of important parameters to suggest that autism as a diagnosis for some is not a static entity. And indeed, for an even smaller some, may not be a lifelong persisting entity based on this and other skills acquisitions...