ADHD, ASD and Disability Benefits Collide

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This is a tricky talk. ADHD and Autism Spectrum Disorder (ASD) are not simple medical disorders. They come with a lot of baggage.

There is a video version of the talk here with the slides and text and links to related articles or posts below.

Slide 1: The Report you see above, issued at the end of May, is 444 pages and is the first of two telling the UK it’s in big trouble – it’s about to lose a generation with ADHD and ASD playing a big role in this.  The catch-phrase is Britain is paying 25 times more on benefits for young people out of work than it’s paying on efforts to get work for them.

A week after the talk was recorded, a guy called Healey Britain’s Defence Secretary, semi-stating the country can grapple with ADHD/ASD or with Putin but not both, resigned, triggering an attack of serious political vapors,

Slide 2: A 1980 medical document UK politicians know little about – DSM III – lies at the heart of this crisis. Faced with a divide in US mental health between Freud on one side and new psychotropic drugs on the other, in an attempt to get people on the same page, DSM introduced operational criteria. These center on things we can observe and agree on – like poor sleep, loss of energy, suicidality etc – unlike neurosis or neurotransmitters which are ideas not observables. Both sides can agree that if you have at least 5 of these 9 observables you can be diagnosed as depressed.

In 1980, DSM also said a doctor must make a judgement call. You could have 5 features of depression because you’re pregnant or have influenza – your doctor must decide which it is. People harmed by meds know that leaving the decision to doctors doesn’t always work out.

In 1987, DSM quietly dropped doctors from being judges to just another juror. The same set of features could now be used to say we were both pregnant and depressed.  And a door was opened to each of us deciding whether we were depressed or had ADHD or both regardless of what our doctor thinks.

This can’t be right either. We and whoever else might have a say in our diagnoses need to come to a consensus.  We can’t just be told we don’t have ADHD.

Slide 3: Here’s another hot political potato. The Netherlands leads the way in diagnosing ADHD and ASD and in permitting euthanasia for mental disorders.  A monitoring committee, in their 2024 report, outlined the case of an 18-year old with ASD who sought and was granted euthanasia.  No evidence was offered that he had neurodevelopmental delay in childhood. He may have just recently been diagnosed. The relevant processes were followed and the euthanasia went ahead on the basis that ASD is supposedly incurable.

Slide 4: Zygmunt Bauman in this wonderful book told us the Holocaust is a window on our future not a painting of our past. Bauman claimed Max Weber had foreseen the Holocaust in 1920 when he said that once we had the technologies to do things, there would be pressure to do them.

In the 1940s before the Nazis exterminated Jews and other minorities, they began with children and people with mental disabilities – with lives not worth living.  Horror-struck by this now, we forget that German doctors were then the most sophisticated in the world and the Nazis were very public health aware – they banned tobacco.

Their aim was to make their gene pool as good as it could be. The Swedes and others were doing this as well.  360,000 Germans were sterilized and 170,000 terminated.

In 1920, it was too early for Weber to spot that one of the most rapidly developing technology was what we now call marketing or propaganda or fashion. The goal of propaganda is to become invisible – to become fashionable.

 

 

 

 

 

Slide 5: Here’s a friendly looking Hans Asperger, who back in the 1930s created Asperger Syndrome an early version of ASD.  A mild mental handicap. A lot of these children got exterminated . Many parents were happy the decision was taken out of their hands.

Slide 6: In 1980, real people were grappling with real patients. Samizdat hosts 100 Interviews with many of these like child psychiatrists Judy Rapaport and Rachel Klein and some of the key folk responsible for operational criteria Bob Spitzer, Sam Guze and Mandell Cohen.

Slide 7: DSM III created the first ADHD criteria. Up till then, US child psychiatry had been a therapy bastion. They didn’t give drugs to children. Long before they began giving antidepressants or mood-stabilizers to children, the use of stimulants for children with ADHD broke the drug taboo.  Drugs like methylphenidate and dexamphetamine had been around for decades and were off patent – but industry rapidly geared up to patent isomers and extended release versions of these old drugs aimed at profiting from this new market.

Slide 8: In addition to clones of Ritalin, dexamphetamine led to Adderall. Vyvanse and other expensive off-shoots.

Slide 9: Stimulant prescribing and profits rose dramatically in the US compared to anywhere else. Giving controlled drugs to children became a compelling prospect for US medicine – which had replaced Germany as the most sophisticated in the world.

Slide 10: This Oxetine is the next step in the story. What’s an Oxetine?  Fluoxetine Prozac is one. Nisoxetine – a noradrenaline reuptake inhibitor was the first. When Lilly decided SSRIs were a better bet, a bunch of Oxetines like atomoxetine were left behind. Until John Heiligenstein suggested maybe they might help with adult ADHD.

Slide 11: Atomoxetine, branded as Strattera, was brought on the market as you see here – as safe for ADHD because it was not a controlled drug.

Slide 12:  In 1992, adult ADHD was beginning to take off in America – Driven to Distraction was the Listening to Prozac of the ADHD market. Kids don’t grow out of ADHD it told us and it’s not just boys who have it – girl’s do too – more attention based than hyperactivity based.

Slide 13: By the mid to late 1990s, the US was deep into a full scale transition from a Freudian Psychobabble to a Psychotropic Biobabble.

Slide 14: Adults were now seeing adverts for the consequences of not treating their ADHD – failed marriages and careers, accidents, suicides.  And of course you no longer had to give up depression to get ADHD – you could have both. You could add ADHD meds to your antidepressants.  Atomoxetine did a great deal to create this new market

Slide 15: Around 1997, it was almost impossible to give a stimulant to a boy with ADHD in the UK. This British Association of Psychopharmacology meeting brought child psychiatrists and regulators from the US, Europe and the UK along with pro-therapy psychologists.  The aim was a Consensus Statement – getting both sides of a divide to find common ground.

An agreement that no treatment works for everyone made it possible to switch treatments to see for instance if a stimulant helped when therapy hadn’t and vice versa.

A consensus, however, is a flimsy defense against the most powerful disseminator of modern fashions – the pharmaceutical industry.

Two of the people at the meeting were authors on the then unpublished Study 329.

Slide 16:  In 1943, Leo Kanner introduced a new illness – Autism. A condition caused by frigid mothering, affecting 1 in 10,000 children.

Slide 17: As the prevalence of autism increased, a range of factors like drugs taken in pregnancy and genes began to come into the frame.  Heavy metals like lead and mercury were invoked.  Vaccines, which gave a distinctive story – my child was fine up till about 15 months when he had a vaccine and immediately lost skills he’d had up till then, were fingered partly because they contained a mercury preservative.

Slide 18: Autism Spectrum Disorder didn’t appear until the 1990s. As more and more of us were being recognized as having oddities, it made sense to incorporate Asperger’s Syndrome into Autism as a mild form of the problem and Lorna Wing was the main person who proposed this.

The prevalence of Autism Spectrum Disorders rose from 1 in 10,000 to 1 per 1000 and now stands around 1 in 40.  Uta Frith was another academic linked to the ASD idea who recently said when we get to prevalence figures like 1 in 40, something has gone badly wrong.

Slide 19: A 1959 book by James Wilson created Teratology – to investigate abnormalities in fetal development. A Teratology Society was established in 1960. In 1961, thalidomide turbo-charged this new science. Recognition grew that other drugs like Diethyl Stilbestrol (DES) caused vaginal cancers in daughters. Drugs active on serotonin systems were flagged as risky – of which Bendectin, a drug for morning sickness in pregnancy is one.

By 1982, the idea that altered behavior rather than gross birth defects might be a teratogenic consequence was accepted.

Slide 20: Recognition of the behavioral effects of drugs was driven by fetal alcohol syndrome and the effects of anticonvulsants, especially Valproate along with heavy metals like lead and mercury.

Slide 21: Teratology played a big part in the development of epigenetics. We learnt that medicines taken in pregnancy might turn genes on or off. Around 250 genes are risk factors for ASD. None of these cause ASD – but interacting with environmental factors they can lead to ASD.

Valproate is the standout column here – it interacts with something like 130 of these genes. Just to the right of Valproate is a tiny little column – that’s mercury, which had been the big concern.  To the right of mercury is the next tricky looking drug – paracetamol – acetaminophen.

Anticonvulsants and SSRIs are problematic and paracetamol is both anticonvulsant and active on serotonin systems.

Slide 22: Now here’s an astonishing slide.  From Thalidomide onwards there was a general sense that medicines should be avoided in pregnancy.  FDA had categories for drugs A, B, C, D, and X.  But this began changing. And many of the people who advised caution swung around to saying take more not less psychotropic drugs in pregnancy.

What is going on. From the early 2000s companies faced legal actions for SSRI caused birth defects. In 2009 GSK lost a Paroxetine birth defect case which ultimately cost them roughly $1 Billion. A lot of what you read now is aimed at minimizing risks – to companies, not mothers or infants.

Slide 23: This APA ACOG joint statement gives you an example of what happened. These professional bodies are saying even a minute you spend being miserable or anxious will harm your child.  Take the meds.

Slide 24: Tons of articles appeared with illustrations like this blaming untreated depression for causing things to go wrong. Untreated women will drink, smoke, and not eat.  Poverty will cause them not to eat not depression. There is no evidence even severe melancholia causes birth defects. The idea that a woman’s mental state harms her unborn child is primitive medieval thinking.

Slide 25: This was happening not just in the most sophisticated medical country on earth – even in obscure offshore islands like the UK you got the same story as in this book written by well-respected people.

Slide 26: Canada’s now infamous Motherisk Group were quick to jump on the new bandwagon claiming SSRIs were completely safe even though the data in this paper shows increased risks of voluntary terminations and miscarriages.  Gideon Koren, the dude behind Motherisk, was consulted by GSK’s lawyers in birth defect cases at this time. His articles are now getting withdrawn.

Slide 27: Koren pushed the boat out with a 2007 proposal to pregnancy stamp meds to overcome women’s irrational neuroses about meds.

Slide 28:  What you are seeing is the best propaganda money can buy – invisible behind the mask of science. Kenvue the name in the bottom left corner is Johnson and Johnson who sell acetaminophen – Tylenol – paracetamol. This slide was part of a Defend Tylenol program against evidence it causes ASD. Bodies like APA and ACOG feature as partners to J&J in their efforts to shape our thinking – See Partnerships in Healthcare and Unsafe Safety Systems and Tylenol and Autism.

Slide 29: Partnerships like this were evident back in 2004 when the APA were mobilized to resist Black Box Warnings on Antidepressants and wrote an embarrassing suicide note – saying We Believe Antidepressants Save Lives when they should have said Doctors Can Save Lives.

APA, AMA, ACOG etc are making it harder and harder for doctors to save lives now. Before showing you why, let me show you these two slides.

Slide 31: In 2009, GSK were found guilty of failing to warn about paroxetine’s birth defect hazards. As drugs that cause gross birth defects are linked to behavioral teratogenicity, a few of us figured we’d collect studies on SSRI links to ASD.  These Case Control studies show a clear link.  The article reporting this is SSRIs and ASD.

Slide 32: Cohort studies show the same result.  The most interesting study is 6^th from the top from Heidi Malm and colleagues, marked with an X. Malm’s results would have been even stronger had they not buried their most key finding in a footnote apparently because they couldn’t explain it.

Slide 33: In the Malm study there was a 10-fold increase in rates of Fetal Alcohol Syndrome Disorder in women taking SSRIs in pregnancy compared to women not on SSRIs.  In an earlier slide you saw FASD being blamed on untreated depression – this is just not the case. The Canadian Guidelines for Alcohol Use Disorders now recommend stopping and not starting SSRIs.

Slide 34: We sent these very clear results to BMJ Open. The paper also included clear results from 7 animal studies showing neurodevelopmental delay – ASD – in the offspring of mothers taking SSRIs during pregnancy.  You find a similar picture in both human and animal mothers given paracetamol/Tylenol in pregnancy.

Animals don’t do Fashions.  It would be extraordinary if humans were the only animals not to show this effect.  BMJ turned the paper down – saying we don’t publish studies with animal references in them.

Slide 35: Let me take you back to Britian in 2009, which still had no Adult ASD then. This back of an envelope study asked all 60 psychiatrists in N Wales if they figured there was such a thing as adult ADHD. None thought there was.

Asked what they’d think 5 years later – all but 2 figured they would think Adult ADHD was a real condition.  Asked would they be treating it – half of them said yes.

This is one of the things about fashions – you can often see them coming.

Slide 36: The initial NICE Guidance on ADHD followed the 1997 BAP approach – noting that it was a disorder of children and it was worth trying therapy first but be willing to switch to meds if no response.  By 2018 NICE was telling clinicians in blunt terms Adult ADHD is real. Statements like the two below close to tell doctors they could be fired if they don’t recognize and treat adult ADHD – which means if the patient says they have it.

• Implementation of this guidance is the responsibility of commissioners and providers.
• Healthcare professionals are expected to take it fully into account when exercising their clinical judgement.

Slide 37: These 2021 UK data show you ADHD transforming from a condition of pre-teen boys to one on the cusp of becoming a disorder of post-teen women.  Notice the tiny boxes up at the top for age brackets 60 to 90 – we’ll come back to this in the slide after next.

 

Slide 38: This slide gives you the 2026 figures for ADHD diagnoses and prescribing which doubles from 2021 to 2026. This is not because more children are being diagnosed – we have ever fewer children now.  It’s adults, especially women.

Slide 39: The Carlat Reports were once viewed as a defense against pharmaceutical industry influence.  Last month’s issues dealt with ADHD in old age and told us:

ADHD doesn’t disappear with age — its missed… obscured by cognitive complaints, comorbidities, and assumptions that attention problems are simply part of aging.

Demented patients used to wander endlessly from one end of a room to the other and back. Giving them a stimulant can stop this instantly – leaving them sitting down doing nothing. This is the opposite to what you might expect.  It’s the same for hyperactive young boys who stop when given a stimulant. Even overactive manic patients stop. This response does not mean these people all have ADHD. It’s just an across the board action of stimulants on activity levels in motor systems.

Slide 40: You’ve seen an increased spend on ADHD meds but this much bigger increase in spend is what is melting the British political system down.

The blue line shows what until recently was the most solid finding in all of the social sciences – claims for disability benefits peaked between the ages of 40 and 60 and were for Musculo-Skeletal problems.

As of 2019, this changes and the red line shows you the greatest collectors of disability benefits are between 18 to 35 for mental health reasons – primarily for ADHD, ASD and their comorbidities caused by polypharmacy that goes with treating all the conditions younger folk now have.

There are real disabilities here that do need benefit support but there’s something else. Every system can be exploited by smart folk.  I’ve had university students who are in every social club in the university, who have a sense of humor when interviewed, who show no gaze avoidance talking to me – but when I suggest they may not have the ASD they tell me I’m an old dude who is not up with the latest research. They are and they know they have ASD.

Or another very bright woman at university tell me seriously she has 17 different conditions – and emailing me the list when I ask to see it.  It contained both ADHD and ASD.

It’s not just smart university kids, it’s folk from well off smart families who have always been and will always be good at exploiting the system for themselves and their children.

Slide 41: All of this took another twist for Samizdat when we published Patrick Hahn’s Obedience Pills which gives a history of ADHD diagnoses in childhood in the US. This was way back before Covid. It seemed to make sense to reach out to the ADHD community and draw their attention to a book they might profoundly disagree with. They refused to engage.  This refusal felt like the ‘you are transphobic’ message to anyone wanting to discuss what the Trans story tells us about Us.

This is not a jibe at people with ADHD – there is deeply worrying problem for all of Us here. We were sent a Video to show us the harms a hint of skepticism might do to ADHD folk.

Slide 42: Even more than Carlat, for 30 years the Cochrane Collaboration was our defense against pharma. Recently Cochrane were presented with a review of the trials of atomoxetine for Adult ADHD.  Atomoxetine is long off patent.  Its trials were in the 00s. The review which looks like an excellent Cochrane Review was turned down for the following reasons.

Slide 43:

1. The plain language summary mentions ADHD as “something that is thought to continue into adulthood” [this] could not only be insulting to the study population but is also not the expected wording for an academic article. It does not reflect current knowledge on the topic.
2. ‘The omission of ASD as a frequent comorbidity is also a significant omission of the state of the art”.

This is bizarre. Cochrane Reviews cover RCTs and Lilly’s atomoxetine RCTs were only done for licensing purposes. In licensing trials companies do not include 2 indications. Back then, Lilly and others typically said adult ADHD is thought to continue into adulthood. The Cochrane authors echo Lilly.

In the 00s, Adult ASD didn’t exist. The outside reviewers Cochrane asked to vet the proposed Cochrane Review ran Adult ADHD/ASD clinics.

It is hard to resist the impression Cochrane has either gone Mad or is scared of a Trans-like backlash or upsetting some of its Industry ‘partners’. It doesn’t feel like Cochrane any more.

Slide 44: This slide tells you people with Tic Disorders often have ASD and ADHD.  Do they? If you have a tic, you are likely to be given a low dose of an antipsychotic which causes loss of focus, You are then given an ADHD scale which asks about focus and diagnoses you as ADHD. You get stimulants which cause tics.  Or this scenario can run the other way around.  Both of these drugs can cause anxiety or depression so you’ll get an SSRI which – see below –  will increasingly give you an ASD diagnosis.  In some cases of ASD you may have an intellectual disability. People with Tourette’s were never before thought to have any of these comorbidities. they weren’t drowning in polypharmacy.

Slide 45: This is a graph of UK use of SSRIs for people with ASD.  Look at the yellow and purple lines. Yellow is ASD without intellectual disability. Purple is ASD with disability.  The use of SSRIs is increasing in both groups – See Sadik et al.

But the Yellow group is more than 3 times larger than Purple group.  In other words, most people with ASD now do not have an intellectual disability.  The term ASD no longer means people who have had a neurodevelopmental delay.  The 18 year old in Holland was unlikely to have classic ASD.  Most folk diagnosed with ASD would once have been seen as something else.  What?

Slide 46: In 1993 the publication of Listening to Prozac was as convenient for Lilly as Driven by Distraction was for them in 1992. The Better than Well responses Kramer featured are much more consistent with an impact on personality than the treatment of a disorder. We can now see this was part of a transition of normal variations in personality into manageble by meds diseases.

Prior to DSM III European psychiatry featured concepts that few American psychiatrists had ever heard of – Extraversion and Introversion. These do not mean talkative and grinning versus shy and sensitive. Extraverts risk take, introverts risk manage. Extraverts share their anxieties around, introverts face them alone. Our personalities shape our responses to meds – introverts respond to SSRIs, extraverts don’t.  Extraverts need a very small dose of an anesthetic to put them to sleep for surgery – introverts need much more.

Extraverts are the ADHD folk, Introverts are ASD. Looked at this way the idea we could be both ADHD and ASD at the same time is nuts or lazy.

Just as a football teams need folk who can score goals and folk who can stop the other side scoring we need this variation.  Looked at this way, we were better able to use variation – now we are flattening it, making everyone one dimensional.

Folk who have great social skills, who could sell sand to the Saudis and who want to become rich quickly enter corporations thinking that’s the way to go and get set in front of a spreadsheet which they can’t focus on. Their lack of focus becomes ADHD and they get a stimulant which focuses them but kills their creativity and leads to weekend crashes and a disastrous mess.

Slide 47: So what’s going on?

1. Real disabilities almost have to be increasing given with the huge increase in meds taken during pregnancy.
2. Attempting to suppress normal variation with drugs and labels can only disable more – and is likely to end badly – see image below.
3. As is true for all systems, Benefit systems aimed at helping disabled folk are being exploited by smart and well-placed people.

In 416 B.C. Thucydides nailed point 3 down in what has since been viewed as almost the definition of political realism:

The strong do what they can, the weak suffer what they must.

The strong in this case were the Athenians.  The Milesians were the weak. It turned out at least as bad for, possible worse, for the Athenians.  We have lots of parallels today.

What can we expect from politicians?