My recollections of Autism in the 1990s.
From the memory of my readings on neurosciences, neurology and neuropsychiatry.
As a medical student…
I do not authorize psychological nor psychiatric formulations, interpretations nor diagnosis, etc. I never saw a minor diagnosed with autism, I read about it. This is not medical advice nor advice of any kind.
These are my backs and forths on this Substack publication, thanks for asking for clarification Moorea Maguire:
In case the Post is deleted it speaks of Autism as if she was an Expert. Bashing RFK for not being one either, apparently.
Reply 1 from Me:
Sometimes fact checking something without appreciating what a fact is is wasted time:
This text contains insults, but states differences between belief, opinion and fact.
The sort of severe autism you describe used to be around or less 1 in 10,000 kids, the "many parents" is misleading:
As per Wikipedia on Demographics of the US, there are 18,827,000 under 5s, of those 9,624,000 are males and 9,203,000 females.
Assuming a 4:1 M/F ratio, that represents: 962 males, and 230 females, more or less, or 1192 under 5s with that kind of autism. I don´t minimize the impact of families and of those kids, but certainly that can´t be considered a public health problem isolated: it was in the range or below an orphan disease. Tuberculosis and malaria kill more people still now.
And that does not consider the neurotoxic effects of the go to anti-psychotics typically used to treat autism, to calm tamper tantrums, head banging, etc., that perturbs parents, not minors, which in the long run lead to extreme disability that leads to permanent institutionalization and a 1.5-2% death rate every year, usually reported as "natural causes".
And the learning and socialization difficulties such medications, anti-psychotics cause on minors.
On top of severe dyskinesia that leads to extreme isolation and permanent institutionalization because of community violence: those kids cannot leave the house without being mobbed or bullied and probably parents are not told about it even afterwards. They would not have consented knowingly such disabling treatment in such relative high frequency: 5% per year of treatment.
Mad in America is a source, partial, of what I said.
On top of the nothing mental is actually real, and no brain nor genetic disease has been found in any mental disorder, disease, nor spectrum. Not even replicated fMRI or MRI abnormalities have been found not explained by ECT or anti-psychotic use. It would be neurological not neuropsychiatric nor psychiatric. Those are falsehoods. Or do you know better than I?, If you do my brain is open as Erdős used to say:
My own Writings List on Anything Mental. Literally.
Answer by Moorea Maguire
Thanks for your commentary, Federico. I’ve read it a few times and need help understanding which part of my post you’re disagreeing with. I’d like to understand your thoughts, but I’m a little confused as to what your point is.
Reply 2 from Me:
I was as clear as could have been within civic boundaries.
Thanks for replying.
Reply 3 from Me:
Ok, I changed my mind, I think I can explain my view some more:
And then there is the consideration some, many? of those 1 in 10,000 minors with severe autism probably where diagnosed by a neurologist when MRI became more available as having some genetic disease, most likely an uncategorizable one.
In Pediatric Neuroradiology there were hundreds, perhaps thousands of series of no more than 10 patients with uncategorizable neurological diseases with evidence on Brain MRI.
So if there are now 1192 minors diagnosable from 2 to 5 with then classical autism, assuming evenly spread, that would lead to around 300, mostly males for each age of 2, 3, 4 and 5. That would be not enough to make large MRI studies, see below.
Some perhaps with soft neurological signs typical of many paidopsychiatric main categories: ADHD, conduct disorder, perhaps even autism or autism like conditions. Which was a thing until the 90s at least as a differential diagnosis, not as a spectrum of autism.
What separated autism from autism like disorders in pediatric neuropsychiatry was irreversible decline. Hence my comment about anti-psychotics: they cause decline, just psychiatry won´t admit it clearly enough. Mad in America has covered partially and sort of superficially that, but it´s a good start. As far as I saw not in minors, for example…
And autism like disorders was a basket of symptoms and perhaps signs not fitting anywhere else…
Those soft neurological signs were even babbled as minimal brain dysfunction, another basket series of neurological anomalies, most likely normal, and only confidently diagnosed by a competent neurologist or pediatric neurologists, at least in México struggling to get jobs outside of Social Medicine Institutions. Neurologists were known as MDs, Médicos Desempleados, Physicians Without a Job, in the private sector. As recently graduated Psychiatrists were and are in México, and specially Child Psychiatrists (I was told)…
And some minors had clinical evidence suggesting a metabolic inborn disease with a different MRI appearance. These are the articles I read carefully as a physician, not as a medical student.
Being the brain the organ with more genes expressed I could guess educatedly some, many? of those classical autism cases where inborn metabolic diseases, not necessarily by deposit, therefore in classical autopsy studies showing not many histological abnormalities.
So those small case reports were of some disease or diseases most likely not know or not well described and/or with an atypical clinical presentation: a discordance between genotype and phenotype. That´s why I read them. And isolated are not as common, even if there are at least 7,000 genetic/orphan disease per the WHO.
But, assuming independent occurrence in a single individual, 1 in 200 have two of those, doing the math is mind boggling, but 7%, IARC, has at least one worldwide.
Hence phenotype/genotype clinical mismatch, and similar or identical presentation to a classic inborn metabolic disease with variant or discordant MRI findings is a real, even likely possibility for classical autism, not autism spectrum Nebich, Moonshine, not even wrong. But, this is my speculation. Documenting it meticulously will require a lot of money, and really good research proposals, not fish finding quasi-research trips. And it would require minors with truly irreversible decline without any medication and no toxicological influence of any kind whatsoever…
And people think autopsy studies are detailed, they are not, pathologists touch the brain, select soft or hard parts, slice those, use their eyes, and then pick fragments to fix and study under the microscope, not necessarily in that order. They don´t slice the whole brain and look at thinner slices of all of it. Slices of it are around 1 cm in pathologists hands generally coronal, parallel from ear to the ear and top to bottom….
Not entirely straight as salami slices, but, dark humor…
That´s why I think CT and MRI at the beginning were too around 1 cm: to correlate pathology with imaging for academic purposes. But that´s my hunch, despite CT and MRI were parallel from ear to ear but front to back horizontal slices.
Pathologists are guided by touch and see to pick where to look under the microscope.
Which is not what happens with MRI where the whole brain is seen in slices, thick or thin and with different techniques, in different sections: coronal, horizontal and nose to back, perpendicular from ear to ear, know as sagittal, mainly outside the US, not just touch and see.
In the US sometimes they do, or used to do 1, 2, 3 sequences and leave it at that. In México, as far as I could see there were more than 3 series of images. The US was an outlier of doing the least possible imaging with MRI.
And from my strictly personal experience it does make a difference in minors to see 3 planes, 9 sequences and add 1 or 2 special ones. Most of the time findings are minor, difficult to class in a disease, nevertheless present as abnormalities without much doubt. And problematic for neurologists: what do I do with that?.
That´s why I read many articles on atypical MRI presentations of inborn metabolic diseases of the Brain in minors, despite those MRI studies are rare, and mostly done for epilepsy or seizures, most of the time being “idiopathic”, without a cause…
That´s a parallel with classical autism.
If orphan diseases are defined as 1 in 100,000 then I could guess classical autism was a group of at least 10 orphan diseases with similar course: progressive irreversible decline, with different genetics, but similar phenotypes…
Different genetics with similar phenotypes is a relatively new understanding present in at least sudden arrhythmic death in adults, as the Brugada Syndrome or it´s phenocopies, some actually caused by medications!. So, now it is nothing new, not always genetic, but with objective evidence provided by electrocardiography opposed to the Nebich, Nonsense, Moonshine, not even wrong of Psychiatric stuff.
And even there, in sudden cardiac arrhythmic death in adults there are studies identifying a few years ago around 70 or more mutations in several genes, not just one gene and one mutation. It´s not Mendelian…
So much so, that wait and see saw recovery, not always complete in some minors, negating the diagnosis of classical autism. Leading perhaps to the diagnosis of autism-like disorder or something else, never normal, because well everybody has to have something at least!, specially after doing MRI under sedation or anesthesia of a minor. Sometimes with complications, even if minor, as partial lung collapse which I saw a couple of times while supervising studies so the anesthesiologist dealt with that before we finished performing the study.
Which in MRIs for minors makes the presence of a physician, an Specialist nonetheless, an obligation because a technician has difficulty because of authority issues mentioning, bringing up a kid´s lung collapsed on error, or by bad anesthesia technique, clearly visible on MRI scout images planning and guiding the MRI study…
And left the standing question: what do we think, say, recommend on minors with partial recovery?. Autism was a mess at the beginning of the 90s, and now it is even more so!.
Those diseases, perhaps including classical autism were imposible to diagnose genetically even in principle, at least because small sample sizes, until around a decade ago, and nowadays impossible because of inclusion in genetic studies of minors, even adults! with no disease at all: too much genetic noise to pick a genetic signal by diagnostic expansion into autism spectrum disorder. Blah blah blah…
And without a valid research hypothesis: mere fishing research trips that never are replicated. Mad in America has at least one review of a large meta-analysis collating around 15,000 studies across all psychiatric stuff finding not one single valid reproducible MRI finding for all psychiatric disorders considered in those 15,000 studies.
Without mentioning clearly: there was no valid hypothesis to begin with. That´s corroborating there was nothing to find in the first place…(!?)
And since physicians are averse to admitting diagnostic, research or treatment errors, specially for ignorance, incompetence or negligence then I would have assumed without diagnostic expansion, without turning autism into a spectrum, if the at the beginnings of the 90s autism did not change diagnostic criteria, then autism diagnosis would have become neurological, not neuropsychiatric not merely psychiatric Spectrums, and autism diagnoses would have gone the way of the dodo…
That would have been revolutionary but against Psychiatry´s Guild Interests and practice. See at least above: Physicians without a Job, MDs, Médicos Desempleados.
So to continue in business and to not admit errors, mistakes, ignorance, incompetence and/or ill-will they amputated the neurology of neuropsychiatry and turned Autism into a Spectrum of Nebich, Moonshine, Nonsense, not even wrongs.
And it is not unique to Psychiatry, I saw several findings in imaging disappearing from new editions of the same textbook by famous medical authors without an explanation: concealing someone made a mistake, including the author, famous as she or he might have been, by including a finding that did not replicate and could have caused harm as serious as aborting a viable baby…
But, early high risk for abortion pregnancies could be dealt with wait and see, but not when there was the coincidental or false positive of a product with a risky probability of disability after birth. Therefore the fakey diagnostic imaging finding could tip the scale upon a false positive, at least, for disability after birth. Rare as it might have been or not…
And, not many people know psychiatrists for minors are or were infamous because many times they don´t even see as physicians do the minor, even as pediatricians do: in the clinical office not par reference.
They just prescribed from whatever the parent/guardian says to the paidopsychiatrist without even seeing the patient as the rest, or real physicians do, and are obligated to do: inside a clinical office with the parent/guardian present at all times.
Such negligence and callousness of not seeing the patient in a clinical office as physicians are obligated by law and ethics to do was notorious and harmful at least in the 90s when ADHD diagnoses expanded. For what I was told, they did not even filled the teacher´s surveys!. Essential to know inattentiveness and disruptive behavior happened in structured environments as schools. Considered essential to the fakey ADHD so called diagnosis.
The same could have happened with autism pre-spectrum disorders… leading to label normal undiseased non-disordered individuals as autism spectrum people.
Making impossible now to actually help minors with true irreversible progressive decline because they are among a sea of minors with no disease nor disorder, and some harmed by anti-psychotics with no disease nor disorder but behaving mildly concerning to parents, guardians, social workers or teachers.
And around half parents, guardians, social workers and teachers are ill-willed to minors. It has been reported by psychotherapists for parents, so to me it is not a stretch of the mind, some minors by some of them, and some by all of them. And I saw some of that in a psychiatrist office when a mother yanked a kids arm in front of us, and a mother complained about an adult with supposed Bipolar disease.
I brought the possible psychiatric diagnoses of the mothers, näive me, then to the consulting/treating psychiatrist and he told me, reluctantly, that since we were in Social Medicine settings, diagnosing mothers was not OK because psychiatric medications could put them out of a Job: those mothers in his professional opinion could have been work disabled, out of Social Medical Insurance, and with a “sick” son, already presumed disabled or to be disabled without his valuable professional help. Lasts are my hyperboles, the firsts took some shrewdness on my part to be elaborated by him, an experienced and shrew psychiatrist, with a flair of cookieness by training and belief.
Then he at other times blamed the minors claiming mothers misbehaved because they were dealing with a priori sick kids. And as all or many clinical psychologists and psychiatrist he was reluctant to go to the district attorney to make a formal complaint on behalf of a minor or an adult abused by their mother as law mandated.
And with further probing against the Psychiatrist I got the typical: It is inherited, it is genetic. Dah… Blah Blah Blah…
And in some, many? minors detailed MRI might not even done in the first place, despite being widely available. One consideration is precisely it requires anesthesia for the very young, and nowadays psychiatric diagnoses passing as real, it lowers the bar to go with the psychiatric rhetoric and claiming against reality they have autism spectrum disorder, etc.
Where I was going with this?: to try to bring attention to fact checking is no checking at all if one goes with the info most likely easily available. Which in all mental things has nothing to do with reality. If it did it would be neurology, and that is rare: neurologists have no jobs precisely because neurological, brain diseases in minors are extremely, or just rare. Hence the Psychiatric labels…
Most common diseases in Pediatric Neurology seen in Medicine are counted with the fingers of one hand, even if there are hundreds of descriptions in Textbooks.
And on a personal note, there are so many people who call themselves autistic/neurodivergent and are either aggressive, unable to understand or willfully ignorant that I can´t make my point explicitly, without causing harm for them, me or both. Aware most of the time for most of them will be useless if I did: they believe, and can´t or won´t know otherwise. Why should I bother?.
On a second note: Do you think journalists or science journalist are going to pick that if at all, and worse just reading about it?. No, knowing what I wrote is not something even specialists knew, it took me love, caring, competence and curiosity at least for the 3 reasons I point at the bottom of this post of mine:
My Own Reading List on Anything Mental.
So, my point for me is personal and requires reading at least the last posts of the last link I provided…
And as a curious etymological gold nugget when people call themselves neurodivergent, they are calling themselves neurodelusional: not deviated from the norm, the normal, but deviated from the trail an ox and a plow make on arable land.
Even though delusion seems related for not a game, dē lūdō., not playing, de-lirare has another origin in oxen and plows, where the word insanity/madness actually I think comes from. And in practice was a shorthand of being unable to behave according to reality, not to mere expectations by society or community. That was eccentric, out of the center.
But starting from being out of the center does not mean going against reality either way, that is de-lirare: madness, going against reality. Not merely a game of labeling one self with delusions: false beliefs against reality when shown evidence by someone else of what reality is.
There is a probatory burden which cannot be inverted. It cannot be a burden on the presumed deluded.
And how to label a delusion correctly is something not even psychiatrists and clinical psychologists know how to do: they have to show evidence a belief? is erroneous, and being a belief that is not possible.
Evidence only works against opinions and facts. Facts are objective, opinions are based in facts. And a belief, any and all beliefs, have no basis for questioning from facts nor opinions.
Even the, assuming, delusional is a factual statement, or an expressed opinion, the psychiatrist or clinical psychologist have to provided at least a fact to base their own opinion or their own facts: the probatory onus is on the psychiatrist or clinical psychologist based on facts, not beliefs and certainly not on fact-less beliefs passed as opinions.
Hence they recur to the it makes sense to us: the common delusional. The we all deviate from reality.
And then try to probe the arguing ability of their clients/patients when there is no factual bases to do such thing.
And neither psychiatrists nor clinical psychologists can provide evidence at all!, they can´t: they are not experts on reality, they boast being expert is mind stuff which is not real at all.
They would at least commit the fallacy of Argument from Authority in things that are not real, an Appeal to Fake Authority Fallacy. Hence my Nebich, Moonshine, Nonsense, not even Wrong of all Psychiatry and Clinical Psychology.
It is not a synedoche, btw…
Ironic, right?.
Thanks.
Federico Soto del Alba.