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/

"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.

"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.

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.

'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...