Going in Circles

More on the saga of ASD.

Gravitation: the tendency of all bodies to approach one another with a strength proportional to the amount of matter they contain – the quantity of matter being ascertained by the strength of their tendency to approach one another. This is a lovely and edifying illustration of how science proceeds, having made A the proof of B, makes B the proof of A. [Ambrose Bierce (1842-1914), The Devil’s Dictionary (1911)].

Almost lost in the chaos enveloping the Good Ol’ US of A was the news that the supremely unqualified Secretary for Health and Human Services, Mr RF Kennedy Jr, has appointed as Surgeon-General one Dr Casey Means, a medical graduate registered as “inactive.” Surgeon-General is a seriously important position but her main qualifications appear to be that she is a Trumpophile who makes her living as something called a “wellness influencer.” Our resident expert on all things modern dismissed it: “Wellness? It’s whatever you want it to be that makes money.” That seems to leave it fairly wide open so I quietly checked Wikipedia which distinguished between well-being as a psychological concept and wellness as alternative medicine. On her website, Dr Means appears to have a foot in both camps. I’m not sure why her version is called alternative as the World Health definition of health is very broad: “The Conference strongly reaffirms that health, which is a state of complete physical, mental and social wellbeing, and not merely the absence of disease or infirmity, is a fundamental human right …” (Alma Ata Declaration, 1978).

The idea of a healthy lifestyle goes back forever and was absolutely central to medical practice throughout my training and career: “Lose weight and get fit, lay off the booze and smokes and weed, stop eating junk, get regular sleep, practice safe sex, don’t drink and drive, wear a hat outside, get your Pap smears, blood tests and immunisations, etc.” Needless to say, nobody took any notice. I had a patient once, an alcoholic policeman, who often saw me running along the road past the police station in 40C heat and 85% humidity. “You’ll kill yourself,” he scoffed. His advice was: “Everybody needs one bad habit. You do it until it kills you, otherwise you’ll live too long and finally die of boredom.” By his standard, he didn’t die of boredom although I think liver failure and alcoholic neuropathy weren’t much fun. Anyway, Dr Means’ wish list for the US government is fairly broad:

We need inspirational national leaders helping to inspire people to care about their health, the food they eat, and their fitness. We also need leaders who understand the relationship between human health and environmental health, which are inextricably linked. We cannot go on poisoning the earth without destroying our own health … (Newsletter 35)

Seeing Mr Trump is overweight, so unfit he can hardly walk to his golf kart, pointedly eats junk food, intends to “Drill, baby, drill,” and the nation he leads is 75% overweight or obese, we wish her good luck in her new career. She’ll need it as she’s up against some fairly entrenched opposition. For example, a recent study found that people who live near golf courses in the US (under 3 miles, or ~5km) are at up to 200% greater risk of developing Parkinson’s disease than those who live further away. Where the town water supply comes from groundwater beneath a golf course, the risk is higher. The authors proposed that pesticides and other chemicals leaching into the groundwater or drifting on the breeze were the cause. Just for a change, the problem appears to be worse in wealthy areas. For example, drinking water from Cape Cod contains the pesticides chlorpyrifos and 2,4-D (used in Agent Orange in Vietnam; both banned throughout most of the world). Now since Mrs Means’ new job depends on the goodwill of the owner of a number of golf courses, one who is notoriously intolerant of opinions he doesn’t like and who is sublimely resistant to facts, we can only wait to see the fireworks. Despite the laudable aims listed in her Newsletter 35, I suspect that like all the people in their new jobs under Herr Drumpf, she will quickly trim her sails to the prevailing breeze.

Perhaps she’ll distract herself by jumping into one of Mr Kennedy’s pet projects, finding the “cause” for “autism.” I use quotes as I am utterly unconvinced that what is now called “autism spectrum disorder” is either a unitary “thing” in its own right (a natural kind), or a disorder (an unnatural or undesirable state with no moral connotations), meaning it therefore has no cause. The White House order establishing the Make America Healthy Again commission referred to a massive increase in this condition in US children, from about 4 in 10,000 to 1 in 36, or about 7,000% increase in just a few decades. Mr Kennedy has committed his department to reporting on the cause by September (this year). In particular, he wants his commission to avoid being led astray by the “canard” that the “epidemic” of autism is due to better diagnosis and improved awareness. Instead, he wants HHS researchers to look for toxic and environmental causes (which is code for vaccinations).

Again, the entrenched opposition will be intense and is rapidly getting organised, as seen in an article from last week’s Parents news site. This was circulated in a group email by psychologist Chuck Ruby, executive director of the International Society for Ethical Psychology and Psychiatry (ISEPP). It gives a series of questions and answers to provide the “Evidence-Backed Reason Why Autism Rates Are Rising,” but, as Chuck showed, they didn’t. The article is essentially a long list of all the distractions, elisions and fudges that are offered as the “scientific justification” for the idea that (a) Autism Spectrum Disorder (ASD) is a real, unitary and readily-identifiable entity which is (b) abnormal and undesirable/dangerous and (c) results in a disability which must not be regarded as a disability or handicap but (d) needs special treatment/consideration/management/compensation because it is (e) biological and outside the individual’s responsibility;

Q-1: “What Is Autism?

A-1: Autism spectrum disorder (ASD) is a neurodevelopmental condition that affects how kids experience the world around them.”

The word “neurodevelopmental” has no meaning in science as it can’t be operationally defined. It is supposed to be some sort of antonym to “neurodegenerative,” which can be defined and is thus accepted. It is used only to block questions. Echoing the prescient Ambrose Bierce, Chuck replied: “In fact, how they experience the world around them affects whether they are said to have a neurodevelopment condition.” Circularity is not science. We move to the next question:

Q-2: “How Does Autism Develop?

A-2: Autism develops from a combination of genetic and environmental influences…”

Dr Ruby responds: “Duh. What doesn’t?” Notice, however, how the authors have slipped from “What is?” to “How come?” without saying what it is. That leaves it wide open for everybody to understand what they like from it, to insert their own definitions. Imprecision is not science. With this answer, we’re drifting into pseudoscience.

Q-3: “How Does Autism Present in Children?

A-3: Because autism is a non-linear spectrum disorder, signs or traits can vary from child to child … This means autism looks different for every person diagnosed with the condition.”

Chuck replies: “They are using the concept of ‘spectrum’ to excuse the heterogeneity of the concept.” If it looks different for each case, then what do the “sufferers” have in common that says they all belong to the single group of ASD? We end up with a mishmash of behaviours that, with a little ingenuity, can be applied to practically everybody. If everybody is autistic, nobody is. The drift to pseudoscience is turning into a rush.

Q-4: “How Is Autism Diagnosed?

A-4: Autism is diagnosed through a series of screening assessments at 9, 18 and 30 months. It can be reliably diagnosed at 18-24 months.”

Two problems here. First, blind screening of the entire population using sloppy criteria by people ranging from fervent believers to total skeptics will inevitably result in wild over-diagnosis, i.e. huge numbers of false positive diagnoses, where a person said to have the condition does not, in fact, have it. In psychiatry, this is a much greater problem than in medicine as there are no biomarkers to confirm a diagnosis of mental disorder, i.e. no blood tests or scans. It’s all opinion. Second problem, as Chuck Ruby identified, is circularity: “Step 1-decide that a certain set of experiences is a disorder; 2-make up a list of criteria symptoms that define the disorder you just created; 3-apply those criteria to people you have already decided are disordered; 4-marvel in the reliability of the assessment.” By now, we’re about to get stuck in the pseudoscience swamp.

Thus armed, they announced that the massive increase in ASD diagnoses is due to “increased awareness, expanded diagnostic criteria, and improved screening practices…It’s not that we are seeing more autism—it’s that we are better at identifying autistic people ... not necessarily an epidemic.” That will be news to Mr Kennedy who is convinced it is an epidemic (noun: “the rapid spread of disease to a large number of hosts in a given population within a short period of time”) due to toxic effects and he will sort it out in a few months (as though nobody thought of toxic effects before). The article now moves to a new section: “Combatting Misconceptions and Falsehoods About Autism.”

Fact-1: “Autism Cannot Be ‘Prevented’. It's a natural part of neurodiversity, just like variations in personality, learning styles, or temperament.”

OK, then please explain why it isn’t just personality, i.e. this whole thing called “neurodiversity” isn’t just a medicalised and sanitised cover for accepting that everybody’s different: “Oh, she’s so quiet, isn’t she. Do you think you should get her checked for autism?” “No, that’s just her. She’s quiet, and happy to be quiet.” This becomes a much bigger issue in so-called adult autism: the diagnosis is widely used to avoid the label of anxiety, especially social anxiety. Anxiety is seen as a moral failing that people should deal with, whereas ASD is a legitimate biological disorder that doesn’t require any effort but must be accommodated by society with special dispensations, such as extra exam time, etc.

Fact-2: Vaccines Do Not Cause Autism … the harmful myth that vaccines cause autism.

That’s fine, just tell RFK Jr.

Fact-3: Autism Cannot Be ‘Cured’: Autism has always existed. It is not a disease. Autism is a brain profile—a part of human neurodiversity that has always been here.

Totally agree: that’s because it’s personality, not a disease or pathological state, and personality isn’t a “brain profile.” There’s nothing to cure. With this admission, we’re deep into pseudoscience territory.

Fact-4: “Autism Can Affect Kids of Any Gender.”

Normally, boys are diagnosed three or four times as much as girls. However, they say, that doesn’t mean boys are being over-diagnosed, it means girls are under-diagnosed. Researchers need to develop new questionnaires that will find more cases of autistic girls so they can… Can what? Somewhere, they forgot to mention treatment.

Fact-5: “Autism Doesn't Equate to Hardship”

Fact-6: “Many People With Autism Are Able to Live Independent, Full Lives”

That’s because there’s actually nothing wrong with them, as wrong, diseased, disabled. Different, fine. Vive la difference. We need to be perfectly clear: we are not talking about the tiny number of severely affected individuals whose early development halts at 18-24 months, leaving them unable to speak or care for themselves. People with true autism are manifestly severely disabled. The suggestion that they have anything in common with people like Albert Einstein is just laughable (Einstein wasn’t autistic, he was an absolute arsehole to the many women in his life).

They give a few other boring facts and conclude with advice from a “neurodivergent” psychologist on what to do if you suspect your child is autistic: “… seek an evaluation from a neurodiversity-affirming professional.” There is, of course, zero chance of a “neurodiversity-affirming professional” saying “No, your kid’s fine, he’s just a bit different, that’s all.” The same psychologist continues: “I’m passionate about shifting the conversation from pathologizing to empowering. When we … create space for different ways of thinking, we all benefit.” Well, that’s true, and it applies a fortiori to personality differences.

What’s the outcome of this bit of carefully-crafted and targeted propaganda? Apart from giving anxious middle-class parents more to worry about, very little. It says only: “If for some reason you suspect your child may not be 110% normal in every respect, go to see somebody who firmly believes in autism who will confirm your fears and tell you not to feel guilty, which makes you feel twice as guilty.” The only losers are the unfortunates who will be labelled for ever. They can join the ever-expanding ranks of children labelled ADHD and gender dysmorphic who, to a large extent, share the same lists of vague and loosely-defined symptoms.

If we look at this in the context of psychiatry’s long history of abominations, it brings us back to the well-known question: Do psychiatrists know what they’re doing? Psychiatrists react badly to that question, angrily insisting that of course they do, they have made huge advances in the evidence-based scientific understanding of mental disorder and it won’t be long before they can finally bring this scourge under control yahdy yah. By definition, however, that is false because what they won’t do is produce evidence that the evidence they have collected is correct. That may sound a bit contradictory but some examples from the touchy subject of race will illustrate it.

In apartheid South Africa, the government spent eleven times as much on educating each white child in the segregated schools as they spent on African children. Their argument was that Africans are intellectually inferior to whites, therefore spending a lot of money on them was a waste as they couldn’t benefit and could only manage unskilled jobs anyway. Testing of fifteen year old African children seemed to confirm this, as most of them struggled to read and write but that didn’t matter as they could work as manual labourers or domestics. This was also the case in segregated regions in the US for decades until the 1960s, or later. Black children were crammed into poorly built schools with minimal resources and often unqualified teachers, and they did badly. They could read just enough to be agricultural workers or on production lines or in the military, but that was it. However, as was always known, the policies produced the outcome, not the other way around. Treating children as slow and giving them a rudimentary education produced poor results, which were then used to justify giving them a rudimentary education. The theory that black races are intellectually inferior to white led people to collect evidence that confirmed their prejudice. Evidence that refuted it, such as African races doing better than whites (e.g. Jesse Owens, in the 1936 Berlin Olympics) was ignored or concealed.

This is also true in psychiatry. The belief that people are genetically different/inferior leads to a form of “treatment” that will confirm the belief. The simple fact is that despite spending billions on searching for “the genes of mental disorder,” nothing interesting has ever been found. The only people who believe there is evidence are people who believed it beforehand. So back to Mr Kennedy and his determination to prove all the doctors and psychologists wrong – in just a few months. I don’t think it will be as easy as finding pesticides sprayed on golf courses cause Parkinson’s Disease. But before they spend too much time and money searching for the “cause” of “autism,” wouldn’t it be better to sort out whether it is a “thing” such as can have a “cause”? Trouble is, all the people involved have made up their minds. That’s not science, that’s the highway to pseudoscience.

PS: Despite appearances, my mind isn’t made up. I’m a skeptic so I’m allowed to change my mind with new evidence. Let me see the proof that ASD is a valid unitary entity which can reliably be detected and which has clearly-defined causes that can be remedied but,until I see that proof, it’s all personality to me. And oh boy, am I lucky they didn’t have this diagnosis when I was at school. And ADHD, and ODD, I would have won the jackpot. But it wasn’t my fault, it was the teachers, they were picking on me.