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...

Thursday, 27 February 2025

RRBs accompanying autism are not benign

 A world away from the kum-by-yah and TikTok-ing of restricted and repetitive behaviours (RRBs) accompanying a diagnosis of autism, a real-world perspective...

""Rhianan - who was autistic - became "fixated" on things due to her condition, and said: "Her being groomed was huge and I saw her change and it had a huge impact on her."" https://www.bbc.co.uk/news/articles/c4g77e57q17o

And more detail: "... downloaded bomb manuals, guides on guerrilla warfare and media glorifying white supremacy and Nazism."

She was the youngest girl in the UK to be charged with terrorism offences. 

'Fixation' aka RRBs (repetitive and restricted patterns of behaviour) as part of a diagnosis of autism are not benign. And for this young woman, and many others like her who have similarly come to the attention of anti-terrorism services e.g. ‘Staggeringly high’ number of autistic people on UK Prevent scheme https://www.theguardian.com/uk-news/2021/jul/07/staggeringly-high-number-of-people-with-autism-on-uk-prevent-scheme the onus should be on early identification and treatment/intervention of such issues. To not do so leaves the person vulnerable and more widely, it makes society vulnerable.

Sunday, 23 February 2025

Genes and environment and regression

Pathogenic variants in chromatin-related genes: Linking immune dysregulation to neuroregression and acute neuropsychiatric disorders https://onlinelibrary.wiley.com/doi/10.1111/dmcn.16276

Interesting article: "We report eight children with de novo pathogenic DNA variants in chromatin-related genes: MORC2, CHD7, KANSL1, KMT2D, ZMYND11, HIST1HIE, EP300, and KMT2B." Chromatin is a chemical soup of DNA and proteins that condense DNA so it can fit into the cell nucleus. A sort of biological suitcase if you like.

So: "All children experienced infection or vaccine-provoked neuroregression or abrupt-onset neuropsychiatric syndromes. Most had delayed development (n = 6) before the first regression, and four had immune deficiency or autoimmunity (n = 4). At a mean age of 4 years 2 months (range 1–8 years), symptoms included infection-provoked autistic/language regression (n = 6), cognitive decline (n = 3), gait deterioration (n = 3), or abrupt-onset anxiety, obsessive-compulsive disorder, and/or tics (n = 5)."

The authors talk about how chromatin dysregulation may very well play a role in some "autistic regression and abrupt-onset neuropsychiatric syndromes". That infection and vaccine-provoked neuroregression is mentioned is important and illustrates how natural and 'acquired' infection (yes, a vaccine is all about provoking the immune system into formulating a response to a target disease) can impact on development, behaviour and cognition. I might add that this is not the only route from such exposures to behavioural consequences as per the work on mitochondrial issues e.g. Clinical presentation of mitochondrial diseases in children with progressive intellectual and neurological deterioration https://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2009.03488.x

Implications? As I've said before, regression in previously acquired skills is not a typical part of development. When it occurs, the onus is on medical professionals to seek answers and conduct the appropriate examinations to determine potential causes and where possible, mitigate them. Again in the context of autism, there are examples of how to do this e.g. Developmental regression and mitochondrial dysfunction in a child with autism https://pmc.ncbi.nlm.nih.gov/articles/PMC2536523/ bearing in mind the need to keep an open mind. And minus any hype.

Saturday, 8 February 2025

"Phenotypic divergence between individuals with self-reported autistic traits and clinically ascertained autism"

Phenotypic divergence between individuals with self-reported autistic traits and clinically ascertained autism https://www.nature.com/articles/s44220-025-00385-8

So: "These findings highlight the need for a differentiation between clinically ascertained and trait-defined samples in autism research."

Quite a bit to take away from this study. Not least that if you are going to include the 'self-diagnosed' in your autism study, you perhaps need to say so in the title, abstract and body text, and potentially conduct separate analyses of any findings based on formally diagnosed with autism vs. self-diagnosed with autism. No, you can't honestly say your study is 'about autism' if not everyone in your cohort has received a formal professional diagnosis of autism. Sorry.

Further: "Despite having comparable self-reported autistic traits, the online high-trait group reported significantly more social anxiety and avoidant symptoms than in-person ASD participants."

This is another important point and so beautifully fits in with the ICD-11 diganostic description of autism, highlighting how there are 18 boundary conditions that can 'look like autism' but aren't autism. In this case, how the self-reported (in this cohort) may well have features that whilst looking like autism are more likely to stem from an anxiety or personality led disorder: https://icd.who.int/browse/2024-01/mms/en#437815624

I know such studies aren't going to make an iota of difference to those chained to the 'anyone can self-diagnose autism (replace with other behaviourally defined condition that doesn't have an objective diagnostic marker yet)' mindset. But for everyone else who does believe in science and the value of expert assessments, yet more proof that autistic traits are no longer the exclusive domain of a diagnosis of autism and the only way to tease out autism from 'condition(s) that manifests autistic traits' is via a comprehensive, expert-led assessment.

Wednesday, 5 February 2025

Prevent closed Southport killer case 'prematurely'

Prevent closed Southport killer case 'prematurely' https://www.bbc.co.uk/news/articles/c0rqxpg2ryvo

"[Rudakubana's] potential ASD [autism spectrum disorder] and 'special interest', which frequently are combined, are part of the reasons that make him susceptible to being drawn into terrorism.

Some initial 'answers' are starting to emerge following the heinous crime in Southport in 2024 but there'll be more. Not that these should be any surprise given what we already know about the issue of autism and susceptibility to extremism and radicalisation e.g. Autism spectrum disorder, extremism and risk assessment https://onlinelibrary.wiley.com/doi/full/10.1002/cbm.2330

The news report also includes this really strange quote: "The officer also noted that Rudakubana had been diagnosed with an autism spectrum disorder (ASD), and said the way to address his "vulnerabilities" may lie outside of the Prevent scheme." This is strange because the state already knew Prevent was dealing with 'staggeringly high' numbers of autistic people: https://www.theguardian.com/uk-news/2021/jul/07/staggeringly-high-number-of-people-with-autism-on-uk-prevent-scheme and already learning how to 'manage' such vulnerabilities.

The fact that this important aspect of this particular offence is at last seeing some 'daylight' is welcomed. It forms a part of the wider inquiry into what happened in Southport and, importantly, how such a horrific crime came to be. One would hope lessons will be learned for the future safety of the general public.

Friday, 31 January 2025

From the embers of Spectrum 10K, an autism 'neuroimmune' phoenix may rise...

Statement from the Spectrum 10K research team, 30th January 2025 https://www.autismresearchcentre.com/projects/spectrum-10k/

It looks like Cambridge have decided that Spectrum10K - with the "intention had been to create a database with 10,000 DNA samples related to autism health research" - is to call it a day. 

Various voices, from several different autisms communities (note the plurals), had raised concerns about the initiative and particularly, what the endgame was. The PEAPOD studies gauged opinions from various of those autisms communities and well, ultimately I think the organisers probably thought it just wasn't worth the efforts. 

Will it be missed? For some, no. For others, particularly those allied to the genetics ilk, perhaps. 

But from out of the embers comes a potential phoenix as we're told that "there are now other very large health and genetic databases in the UK and internationally that have become available as a resource for autism health research. This means that we no longer need to collect new DNA samples as we can use existing health and genetic databases to better understand the health challenges faced by autistic people.

More specifically one of the potential new aims seems incredibly sensible: "Whether autistic people experience greater prevalence and severity of neuroimmune conditions, and – if so – why". I'll stick my neck out here and say that this is probably more likely to yield actionable results in the form of both data on such 'neuroimmune conditions' and the ways to treat said conditions and their likely impact on the presentation of autism. Of course I am biased around the importance of somatic health conditions and autism... Bridging the Gap Between Physical Health and Autism Spectrum Disorder https://pmc.ncbi.nlm.nih.gov/articles/PMC7335278/

Tuesday, 28 January 2025

"Personality disorder diagnosis 'turned my life upside down'"

Personality disorder diagnosis 'turned my life upside down' https://www.bbc.co.uk/news/articles/c3w8517wd02o

"For some, the diagnosis of a personality disorder can be a route to treatment and understanding. But others have said their diagnosis has led to mistreatment and stigma."

There is an awful lot of stigma around the diagnosis of personality disorder. Borderline personality disorder (BPD) in particular, carries lots of stigma despite an estimated 1-3% of the population living with the condition.

The reason(s) for the stigma are complex but probably in part relate to the symptoms of BPD - emotional instability, disturbed patterns of thinking or perception, impulsive behaviour, intense but unstable relationships with others - and much like in other psychatric conditions, the 'fear' around something like BPD and (exaggerated) perceptions of 'unstableness' for those with a diagnosis.

This article talks about an important topic on the potential 'misdiagnosis' of personality disorder, often delivered when complex cases come to clinical attention. 'Autism' is also mentioned in this news piece, as a potential alternative diagnosis - "is now waiting for an autism assessment" - and illustrates some important points, not least that there is sometimes significant overlap between the presentation of BPD and some phenotypes of autism.

It's a difficult topic to discuss in some quarters, and science is still 'feeling its way through' such overlap and the hows-and-whys. The recent paper by Zavlis & Tyrer: The interface of autism and (borderline) personality disorder https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/interface-of-autism-and-borderline-personality-disorder/65B36665CFAE841DC852F68996AD9ED6 provides a really good 'where we're at' appraisal of this topic, not least highlighting that there is overlap and that needs to be taken into account when assessments are done.

I'm also coming around to the idea that in amongst the huge heterogeneity that is 'the autisms' for some, autism - a childhood developmental disorder - may well 'morph' into something more approaching a personality disorder. We know, for example, that in an estimated in 1 in 10 cases, autism 'progresses' to schizophrenia: Diagnostic progression to schizophrenia: A nationwide cohort study of 11 170 adolescents and young adults with autism spectrum disorder https://pubmed.ncbi.nlm.nih.gov/36057134/ It stands to reason that other 'progressions' are potentially possible, and certainly would account for some occasions of overlap between the two conditions. More study - minus hype, hesitency, or neurobabble - are required.

Monday, 27 January 2025

"Detecting noncredible symptomology in ADHD evaluations using machine learning"

Detecting noncredible symptomology in ADHD evaluations using machine learning https://www.tandfonline.com/doi/full/10.1080/13803395.2025.2458547

"Diagnostic evaluations for attention-deficit/hyperactivity disorder (ADHD) are becoming increasingly complicated by the number of adults who fabricate or exaggerate symptoms."

A natural consequence of having a behavioural defined condition with as yet, no objective biological test or tests. This is not a new topic by any means - Feigning ADHD? - but an incresingly important one. Most people don't fabricate or exaggerate but there will always be grifters, and in some cases grifters who either go 'shopping' for their diagnosis and/or utilise the various online resources that provide information on 'how to get a diagnosis' (typically, but not universally, wrapped in the neurospeak of neurobabble). Such an issue also aligns with the knowledge that some diagnostic providers are themselves not always 'accurate' in their diagnostic decisions: ADHD: Private clinics exposed by BBC undercover investigation https://www.bbc.co.uk/news/health-65534448

We've also seen this issue increasing in importance in research and particularly in amongst the various 'online' based psychology studies e.g. https://pubmed.ncbi.nlm.nih.gov/39582239/ where some studies don't even appear to have asked basic screening questions for their chosen cohorts (a sign of particularly bad science).

It looks however, like AI might be another tool in the arsenal to combat such 'noncredible' issues drawing on analysis of self-report responses during the assessment procedure. In this case, authors concluded: "unsupervised ML [machine learning] can effectively identify noncredible symptom reporting using scores from multiple symptom validity tests without predetermined cutoffs." As such technology gets more advanced, it will make it even easier to spot such noncredible situations.

But then the next question: why? Why would someone chose to feign symptoms to get a diagnosis? I know some people will talk about the 'advantages of a diagnosis' but this really isn't a credible answer for many occasions, outside that is, of potential access to some extremely powerful medicines. No, there's probably lots of other explanations which, drawing on the available studies on why people 'self-diagnose', means issues such as group belonging - particularly disability group belonging, the influence of social media and indeed, the presence of other psychopathology also exert potentially powerful influences.

Saturday, 25 January 2025

Is Bill Gates autistic? Probably not.

 There's some great media interviews with Bill Gates at the moment following the launch of his memoir 'Source Code'.

One in People magazine stands out: Bill Gates Says He Believes He Would Be Diagnosed with Autism if He Were a Kid Today https://people.com/bill-gates-says-he-would-be-diagnosed-with-autism-if-he-were-a-kid-today-8780432

Quite a few themes are mentioned but importantly: "... believes he would have been diagnosed with autism if he were a kid today" and "It used to be autism had a fairly narrow definition that was you know clearly identifiable". Such sentences tell us a lot about how the definition of autism has changed (the expansion of what constitutes autism) and an oft-forgotten issue: frank autism, where autism is clearly identifiable as and when it walks through the clinic doors.

Also: "The two things they did, one, send me to a therapist who got me thinking about how I applied my energy and then sending me to a really great school. Those were great for me." This is a really important message backed up by the available scientific data. It stresses that school - education, education, educations - works and works well in many cases, and that far from being 'lifelong', childhood traits are malleable not immutable, something that is research rising in the context that among the various plural 'autisms' at least one phenotype is not lifelong. 

Finally, within the context that a diagnosis of autism is not just about the presentation of autistic traits - traits that are seemingly apparent across a wide number of different conditions and not just autism - but also whether said traits significantly affect day-to-day life, the answer to the question 'Is Bill Gates autistic?' is probably not.

Tuesday, 21 January 2025

'Terrorism has changed': "loners, misfits, young men in their bedrooms"

'Terrorism has changed', says PM on Southport attacks https://www.bbc.co.uk/news/articles/cvg9p39kez7o

I don't want to head too deeply into what was a savage and wicked act perpetrated against children because the focus should always be on the three young girls killed in Southport in 2024 and not the monster that killed them and tried to kill others. But I do want to pass comment on what appears to be a shift following the guilty verdict at the trial of Axel Rudakubana in our understanding of terrorism and what factors may lie beneath such heinous acts. To understand such acts is to be able to prevent them from happening again.

The quote on 'loners, misfits, young men in their bedrooms' made by the British Prime Minister, Sir Keir Starmer, was made at a press conference following the guilty verdict and some important revelations about the killer, his background, his past history of violence and aggression and his contact with various agencies including prevent, the UK anti-extremism programme. It's an uncomfortable fact that there were some 'commonalities' between this horrendous act and other similar killings that includes: significant behavioural and/or psychiatric disorder - including an apparent diagnosis of autism, a history of violence and aggression, an almost obsessional history of viewing and showing interest in violence and murder, a willingness to carry and use weapons, and, given the choice of victims, misogyny. 

A public inquiry has been announced into this case with phrases like 'leaving no stone unturned' in order to try and understand motivations and examine the seeming failings across multiple agencies when red flags were present. The results of that inquiry are likely to be uncomfortable for many people as, alongside the usual definitions and precursors of terrorism, something new is seemingly emerging in the form of certain people without specific ideology who seemingly just want to kill. The big challenge will be to identify who these people might be early and take appropriate preventative action, yet always asking the question 'why?'

I said at the start of this post that the three young girls killed should always be the focus. Their names - Bebe King, Elsie Dot Stancombe, Alice da Silva Aguiar - should be remembered not the monster that took their lives and futures away.

Sunday, 19 January 2025

'Burnout' probably means depression for many autistic adults

Camouflage, Burnout-Exhaustion, and Depression in Autistic Adults https://www.liebertpub.com/doi/abs/10.1089/aut.2024.0147

"Autistic adults are at disproportionate risk for developing depression compared with the general population." Indeed. Depression and related conditions - whether presenting typically or atypically e.g. https://pubmed.ncbi.nlm.nih.gov/25046741/ - is very much over-represented alongside a diagnosis of autism. The reasons are likely complex - biopsychosocial complex - but aren't typically a barrier to appropriate (early) screening, identification and importantly, treatment.

The growth in the word 'burnout' or 'autistic burnout' is interesting but shouldn't distract from the fact that depression is over-represented and for most, burnout is just depression. Indeed in this study looking at impression management and burnout in the context of autism, the authors observed: "Over 70% of participants scored within the clinical range of depression." Armed with that data, this means that preferential screening for depression should probably be more widespread when a diagnosis of autism is given and indeed, should be regular. And when detected, treat it. Yes, employ the talking therapies by all means but keep in mind the superior value of pharmacotherapy and the multitude of options available according to what 'type' of depression is presented.

Friday, 17 January 2025

"Changing approaches to interventions for autistic adults" (and what that means for many autisms)

Changing approaches to interventions for autistic adults

https://onlinelibrary.wiley.com/doi/10.1002/wps.21282

An article that covers quite a bit of ground including mention of profound autism and an important quote: "While this term has generated considerable criticism, especially within the neurodiversity movement, it underscores the fact that, for some adults, autism can have a profound negative impact on quality of life. Moreover, because these individuals are rarely involved in research, knowledge about effective interventions is limited, and risks of maltreatment (including excessive use of medication and restraint) are high.

So yes, we need to think more about how to include those with profound/severe autism in research and importantly, the translation of that research into practice to improve quality of life, bearing in mind, their needs are probably going to be different from other individuals/groups across the plural autisms. 

And more than ever, we need to be looking at ways to separate out and redefine the massive heterogeneity that the autisms encompass as a priority.

I know the word 'intervention' carries quite a lot of emotion for some, but as we've seen in recent days, there is a need for intervention for some on the autism spectrum - and specifically some of the more able parts of the autism spectrum - particularly in the context of things like emotion dysregulation and aggression (not a dirty word) and where that can unfortunately lead e.g. Teenager guilty of murdering Elianne Andam https://www.bbc.co.uk/news/articles/cqldr37n2xxo and Neo-Nazi satanist jailed for encouraging suicide online and possessing terror material https://news.sky.com/story/neo-nazi-satanist-cameron-finnigan-jailed-for-encouraging-suicide-online-and-possessing-terror-material-13289400 Also, with a really serious offence coming to trial next week already carrying a very unusual warning from the UK Attorney General https://www.gov.uk/government/news/media-advisory-notice-trial-of-axel-rudakubana there's going to be lots of discussion about the behavioural/psychiatric background of the accused and indeed, whether intervention should have already been in place: https://www.bbc.co.uk/news/articles/c4gxlgpkj1vo

Such cases don't require sweeping generalisations but, where needed, intervention(s) for the safety of individuals and just as importantly, the safety of others.

Wednesday, 15 January 2025

How many autistic people were there worldwide in 2021?

The global epidemiology and health burden of the autism spectrum: findings from the Global Burden of Disease Study 2021 [GBD 2021] https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(24)00363-8/fulltext

About 62 million people. Or 1 in every 127 people. And if a quarter of autistic people have 'profound autism', there's over 15 million people with profound autism.

Just one ever so tiny point to make about this study (literature review study): GBD 2021: "The global age-standardised prevalence was 788·3 per 100 000 people" vs. GBD 2019: "The global age-standardised prevalence of the autism spectrum reported by GBD 2019 was 369·4 per 100 000 people".

Yes, there were some (pretty big) differences relating to methodology and data collection including "revisions to the estimation of disability weights" but this strikes me as something that perhaps needs a little closer inspection.

And no, its not all 'growth in adult diagnoses" as per another quote: "Autism spectrum disorder was most common among children and adolescents younger than 20 years, for whom it ranked within the top ten causes of non-fatal health burden".

Indeed, other recent data from the UK pegged the adult autism rate at around 1-1.5%: e.g. Characteristics and primary care experiences of people who self-report as autistic: a probability sample survey of adults registered with primary care services in England https://pmc.ncbi.nlm.nih.gov/articles/PMC11404134/ (again, a "weighted proportion estimate"). This is pretty much unchanged from the Brugha study from 10+ years ago.

Tuesday, 14 January 2025

Dementia risk and autism

 I'm back...

Hello again readers. I've decided to start up the old Questioning Answers blog albeit in a slightly different 'bite-sized' format. Gone (mostly) are the long-winded, get a coffee and yawn a lot blogposts in favour of something a bit more compact.


Here's the first of potentially more posts...

Prevalence of Dementia Among US Adults With Autism Spectrum Disorder

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2828643

"Linked Medicaid and Medicare records suggest a markedly elevated prevalence of identified dementia diagnoses in individuals with an ASD diagnosis." N=100K people/records studied. 

'Markedly elevated' means that around 30-35% of people with autism above the age of 64 were in receipt of a dementia diagnosis in this large cohort. This study also looked at those with autism and those with autism + learning disability and determined that the risk was even higher for those with accompanying cardiovascular issues and/or "depression or other psychiatric conditions."

For reference, here in the UK, the estimated prevalence of dementia in the general population above the age of 65 is around 7-8% (likely an underestimate but nothing like the prevalence noted in that study).

This is scary as hell. And we really need to know why there's the excess risk linked to an autism diagnosis and what science can do to reduce that risk. It also means that 'social care' needs to prepare for a tidal wave of such diseases if the autism prevalence estimates are anywhere near accurate...