'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.

'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.

"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.

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.

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...

Autism research in 2023: a bit of a game-changing year

 So, autism research in 2023. It’s been quite a year. Let me (briefly) tell you why.

The autism numbers game: the only way is (still) up. Northern Ireland, where some great work is done to plot the annual (estimated) prevalence rate of autism spectrum disorder (ASD) in school-aged children, said 1 in 20 (or 5%) in 2023. The US CDC said an estimated 1 in 36 8-year olds (2.7%) were autistic in 2020. The CDC also said 1 in 47 4-year olds were autistic (2%). Scotland also recently produced data observing “The prevalence of autism was 2.60% (10,089 children) in 2022. This represents a 31.98% increase from the 2018 prevalence of 1.97% (7883 children).” That Scottish data, by the way, only covered those at primary school (aged 4ish-12ish years). Other sources too are still showing a growth in the prevalence of autism across other parts of the globe, including a near 5% rate of behaviours consistent with autism or ASD in the Hadza of Tanzania. All data on autism prevalence is still only heading in one direction: UP. 

Importantly, the old ‘all better awareness’ arguments are slowly fizzling out as the effects of those prevalence stats are starting to show on resources and infrastructure that seemingly haven’t kept pace with the growth in numbers. Indeed, one of the head people related to the CDC autism figures, went as far as to say that the stats don’t really support ‘better awareness’ as the primary driver given that the increase is showing across various different ‘levels’ of autism that are/were unlikely to be missed or thought to be something else. Certainly here in the UK, I don’t think I’ve ever read so many reports about school place shortages (particularly specialised school place shortages) as I have this year. And unfortunately, with an estimated 140,000 people (mostly children and young people) awaiting assessment in England alone, I fear the squeeze on resources is just going to get worse and worse. Anyone care to start asking ‘why the increase’ yet?

CDC says yes to ‘profound autism’. Speaking of autism ‘levels’ (as in DSM-5 autism levels of support or the ICD-11 condition combinations), the CDC did something else rather important this year: producing the first ever report on the rate of profound autism in the US. So, for data covering the years 2000-2016, and using the descriptor “classified as having profound autism if they were nonverbal, were minimally verbal, or had an intelligence quotient <50” they determined that 26.7% of those with autism fitted into the profound autism category. An estimated quarter of autistic people are profoundly autistic. That’s quite important.

There were mixed reactions to the CDC use of the term profound autism. Many people were happy to see it, given that it now lays the foundations for more research and more understanding that despite being united by a triad/dyad of symptom combinations, not everyone experiences autism in the same way. Look no further than the awful early mortality statistics following the deadly triad that is autism, wandering/elopement and water safety to see this in action. Of course autism by virtue of just being diagnosed, means support is required for everyone with the diagnosis. But that support will arguably differ depending on whether you possess things like communicative speech and language, present with things like self-injurious or aggressive behaviours and/or need 24-7 care to ensure that your daily needs are fulfilled. Indeed, I often think that the general lack of support post autism diagnosis is a big driver in the reticence to adopt the term profound autism in some quarters. But should people be so reticent? I mean we have similar distinctions when it comes to experiences of learning (intellectual) disability and nobody seemingly bats an eyelid there. 

There is however more to do on profound autism. This ties into other changes that are needed when it comes to assessing things like cognitive functions and communication (verbal or non-verbal) ability in relation to autism. That’ll follow as the term beds in and builds up more of a research base. Asperger syndrome gone, profound autism steps in.

What else? 

Non-persistence of autism in (some) young kids. 2023 also gave a lot more credence to the idea that the saying ‘all autism is lifelong’ probably isn’t as accurate as you might think. Looking at the developmental trajectories of around 200 kids, all diagnosed early with autism, saw about a third of them not continuing to meet the diagnostic threshold for autism/ASD at ages 5-7 years according to a big study. Other independent work also illuminated this topic and argued against the ‘just misdiagnosed’ suggestions that some people might make and that also the state of ‘autism free’ might have important implications for various other issues too.

This was a particularly important finding for me given our paper from a few years back talking about inborn and lifelong not necessarily being the most accurate phrases for all autism. It also accords with various other studies in related areas observing that diagnoses like ADHD and depression for example, aren’t lifelong labels for absolutely everyone either. Although I noted some people tried to talk about ‘masking’ and ‘camouflaging’ as being the reasons why young kids in that JAMA study didn’t meet the thresholds for autism having previously done so, I do have to ask whether they’ve ever seen autistic kids at this age. Indeed, any child at this age, who generally aren’t renowned for their developed social etiquette abilities covering masking et al (this is also the reason that the gold-standard autism assessment instrument, the ADI-R, codes 4-5 years separately from ‘current behaviour’). As to why autism doesn’t persist for some, well, we don’t know exactly. There was talk of intervention potentially playing a role (behavioural intervention) but it’s probably going to be a bit more complicated than just that. For now, we await further studies on this important topic including more longitudinal ones and perhaps also looking at the biology behind this phenomenon. If I was to speculate about why there is autism non-persistence for some, I might be inclined to say ‘look to infection’ for some, and how, more and more, we’re learning that infection and immune responses to infection can manifest as behaviour and developmental issues as well as in immune biology. Just me speculating, so pay no mind (although that autism in Hadza children study did nicely reignite my interest in how infections like malaria can, through various mechanisms, also seemingly lead to autism).

The gut-brain axis is important to autism. I know a lot of people already appreciate this, but seeing it in a peer-reviewed mega paper in 2023 adds a lot more weight to it. Said paper trawled through huge amounts of data about gut bacteria and the like, and concluded that there is something to see both as observation and also as potential intervention. Authors even mentioned the words ‘faecal matter transplant’ (FMT) in the context that what goes on in the gut doesn’t necessarily stay in the gut, and something that is rising in some autism research and other circles. Allied to the gut-brain axis stuff was the reporting from other mega review papers observing that gastrointestinal (GI) symptoms are present in roughly 55% of children with autism, compared with about a quarter of non-autistic children. Constipation comes out on top. So fixed to clinical advice about treating such issues published over 10 years ago, maybe now is the time to preferentially screen and treat such issues in the context of autism? Perhaps recognise that the gut and brain are connected for quite a few labels/conditions? More on that shortly.

Various medical issues are over-represented in autism. More important data points to the various clusters of medical (somatic) issues that seem to accompany autism across the age ranges. Ranging from cardiovascular conditions to immune-mediated conditions, various studies confirmed what quite a few people already knew. With my gluten research hat on (I don’t actually have a hat made of gluten), I was glad to see that the archetypal gluten-related autoimmune condition called coeliac disease was given mention. Who knows, between coeliac disease and the slightly greyish area of non-coeliac gluten issues that seem to be over-represented alongside autism, there’s further hope for wider screening and use of a gluten-free diet in the context of autism? Oh, and just before you inquire about the research base in this area, here’s a couple of meta-analyses from the last few years - see here and see here - saying it might be worth a shot (minus any clinical or medical advice given or intended).

And there was yet more research on the psychiatric and behavioural issues that seem to be over-represented alongside autism. Importantly, and I do think needs a lot more investigation, one study out of Canada stressed the need to look at comorbid psychiatric issues as being an important driver of suicidal behaviours in the context of autism. I know such behaviours are complex and often very individual with a heavy biopsychosocial tilt, but there’s a wealth of evidence out there already suggesting that depression, bipolar disorder, personality disorder and schizophrenia spectrum disorders all convey a heightened risk for suicidal behaviours. All those conditions are well over-represented alongside a diagnosis of autism (yep, an estimated 1 in 10 autistic people will potentially ‘transition’ to schizophrenia). Screen, screen and treat (including, where appropriate, more clinical emphasis on the archetypal anti-suicidal agent that is lithium used in the right context).

Late 2023 research entry: CM-AT results are really, really, really promising. I’ve been following the CM-AT story for quite a while on this blog and beyond. Basically, it concerns a pancreatic enzyme therapy designed for autism that has already crossed quite a few methodological trial hurdles. Then, in November 2023 lo and behold, the results of a double-blind, placebo-controlled trial that say, yes, following the gold-standard trial design, CM-AT is good for treating/managing irritability and agitation in the context of autism in pre-schoolers. Said treatment is also likely safe and effective. This is a potential game-changer and opens the door to things like regulatory approval. Also, exquisite evidence for the whole ‘behaviour is biology’ tenet and the important role of the gut-brain axis in autism, yet again.

There was so much more other science published this year, across all-manner of different topics. Certainly far too much for me to put into one blogpost. I’m a great believer in your citizen scientists and so would encourage everyone to look-see and take part. I can’t help but draw your attention to another paper that basically said the ‘person with autism’ vs ‘autistic person’ arguments typically seen on social media aren’t really worth a dime. Ask the person how they want to be addressed. Oh, and remember, people aren’t ‘neurotypes’ either. They’re people. 

And finally… Saying farewell to Donald.

Finally, [I can see you’re yawning] a non-sciency thing to mention. ‘Patient 1’ from the great Leo Kanner’s seminal paper describing autism - Donald Triplett - passed away. If you’ve ever read or watched ‘In a Different Key’ you’ll have read about him or seen him. Of all the things said about Donald in the various obituaries to him, I think the overwhelming idea that comes across is how much community was important to him; both being part of a supportive community and having a great community around him. Loads of lessons to be learned there. My advice: seek out those who wish to foster community, and there are lots of good people of this ilk. Here's to 2024 and beyond.