Monday, July 6, 2015

Bodies without Organs

When you will have made him a body without organs,
then you will have delivered him from all his automatic reactions
and restored him to his true freedom
-Antonin Artaud, "To Have Done with the Judgement of G_d" (1947)
Joey's story illuminates how autism was understood in the 1950s, a time when the term was still new to many Americans. The Johns Hopkins child psychiatrist Leo Kanner had first described the syndrome in a 1943 case report recounting 11 children cut off from the world by what he called “extreme autistic aloneness.”2 Many had a prodigious talent for rote memory. Others, similar to Joey, were obsessed by rituals, spinning toys, and mechanical objects. Kanner had the field largely to himself until the 1950s, when Freudian psychoanalysts discovered and reinterpreted his work.3 They argued that autism represented nothing less than the emotional withdrawal of an infant at the hands of a cold and emotionally distant parent—the so-called refrigerator mother.4

No one did more to promote this theory than did Dr Bruno Bettelheim. A survivor of the concentration camp of Dachau, Bettelheim had emigrated to the United States to become a prominent public intellectual through a series of books that capitalized on postwar America's infatuation with Freudian theory.5 As director of the Orthogenic School in Chicago, Illinois, a residential treatment center for young people with severe emotional disturbances, Bettelheim became fascinated by autistic children, whose avoidance of social contact reminded him of the withdrawal he had seen among concentration camp prisoners.6 In 1956, he obtained a grant from the Ford Foundation to observe a series of autistic children admitted to the Orthogenic School over the course of several years. Joey would become one of his most famous patients.

Bettelheim twice related Joey's history, once for Scientific American in 1959 and in more detail several years later in his best-known book on autism, The Empty Fortress.7 According to both accounts, Joey was a colicky infant who spent much of his early life screaming for hours at a time. He had yet to speak by 18 months of age and was described as “remote and inaccessible” by his grandparents. Machines engaged him far more than did people, and at a surprisingly early age he learned to take apart and reassemble an electric fan. At the age of 4, when a special school finally raised the possibility of autism, he was spending much of his time rocking back and forth and his first mechanical obsessions had appeared. He refused drinks, for example, unless connected to an elaborate “piping system” constructed with straws.

Bettelheim had little doubt that Joey's behavior represented his response to parental rejection. He related how his mother had first denied her pregnancy and after his birth wanted neither to see nor nurse him. She kept him on a rigid 4-hour feeding schedule (typical at the time for formula-fed infants), oblivious to her infant's crying. Joey's father was less patient and sometimes “discharged his frustrations by punishing Joey when the child cried at night.” From Bettelheim's perspective, Joey had no choice but to withdraw into his own world.1

Countless parents of autistic children in the 1950s and 1960s sought professional help only to be sent into psychoanalysis intended to help them understand how they had, perhaps unknowingly, rejected their child. Does Joey's case history help us to explain how such a “bad idea” became so pervasive among the child psychiatry community? First, it is worth emphasizing that we have only Bettelheim's side of the story, distilled from repeated psychoanalytic sessions. We have no independent corroboration. Second, Bettelheim and his contemporaries thought of autism as the earliest manifestation of schizophrenia, a diagnosis applied in the 1950s to a wide range of severe behavior disturbances in young people.8,9 Some of these children (especially those who presented after the first 3 years of life) may have developed delusional or withdrawn behavior after physical or sexual trauma. Child abuse, it should be remembered, remained largely unrecognized by the medical profession before the 1960s.10 Either way, extensive literature on what psychiatrists called the “schizophrenogenic mother” likely predisposed them to view parents' motives with suspicion.11

For many in the autism community, the popularity of the refrigerator-mother hypothesis before the 1970s continues to be remembered as an example of what might be called “the tyranny of expertise”—the danger of giving professionals too much power. It is a theme that runs deeply in popular renditions of the history of psychiatry, portrayed in movies ranging from The Snake Pit to One Flew Over the Cuckoo's Nest. Although significant questions have been raised regarding Bettelheim's own credentials as a psychoanalyst, he did function as a public intellectual representing his profession in popular media.12 His story provides a bitter reminder that experts do not always listen and cannot always be trusted.

The most obvious legacy of the refrigerator-mother saga has, thus, been a willingness to question medical authority. This questioning reflects, of course, a broad social trend not limited to autism: patients since the 1970s have increasingly sought greater participation in decision-making in almost every domain of medical practice, both conventional and otherwise.13,14 Every physician who works with autistic children has encountered the formidable array of restriction diets, vitamins, and other alternative “biomedical treatments” embraced by many parents for autism despite a lack of evidence from controlled trials. The coalescence of the antivaccine movement around autism has become especially polarizing, pitting parents against one of the most valued tools in the pediatric armamentarium to promote child health.15,16

Yet, focusing on the theme of antagonism obscures the positive contributions made by many parents to research and treatment approaches in autism. It was, in large measure, thanks to parents that the refrigerator-mother paradigm finally collapsed. In 1967, for example, Clara Park challenged the psychogenic theory in The Siege, a firsthand account of her own autistic child.17 Bernard Rimland, a psychologist and parent of an autistic child, joined other parents to found the National Society for Autistic Children (now the Autism Society of America) to promote intensive behavioral interventions that have evolved to become the gold-standard treatment for autism.18,19 Eric Schopler, founder of the influential TEACCH (Treatment and Education of Autistic and Related Communication-Handicapped Children) approach that uses parents as co-therapists for their own children, made clear that he learned much of his approach from parents.20 Parents of autistic children have lobbied Congress for research funding and formed major foundations of their own (such as Autism Speaks, founded by an executive and grandparent of an autistic child) to promote research.21

At a moment in time when the polarization over vaccines has created a deep rift between many parents and professionals, it is worth viewing today's conflict from the vantage point of history. Forgotten for the most part by physicians, the memory of the refrigerator-mother explanation of autism has fundamentally shaped the autism community. It is a story that continues to stand as a warning to the danger of shutting out the voices of parents in the name of a persuasive theory.
- Jeffrey P. Baker, MD, PhD, "Autism in 1959: Joey the Mechanical Boy"

23 comments:

Gert said...

At a moment in time when the polarization over vaccines has created a deep rift between many parents and professionals, it is worth viewing today's conflict from the vantage point of history. Forgotten for the most part by physicians, the memory of the refrigerator-mother explanation of autism has fundamentally shaped the autism community. It is a story that continues to stand as a warning to the danger of shutting out the voices of parents in the name of a persuasive theory.

This sounds like a thinly veiled anti-vaxxer statement, Farmer. Please Lord above, tell me you're not one of them?

Speedy G said...

I've got no problem if people are suicidal. I've gotten my vaccines. Besides, we've got between 12-20 million illegals living in the country who haven't had any. What difference would a few "vaxxers" make?

Gert said...

Suicide, Thersites? Infanticide more like. How many millions have been saved by compulsory vaccinations, do you think?

-FJ said...

At least as many as there were slaves who by compulsion build the Great Wall of China.

btw - Why do you give immigrants a pass on Infanticide? And why don't Medecin sans Frontieres vaccinate EVERYONE w/o exception in the villages they visit?

I know. The "Experts" know best. So why aren't the Greeks listening to the Euro Economists?

-FJ said...

The "University" discourse is the "Discourse of the Master". The "doctors" are "his" servants. And this is one pig Analyst who is aiming to "off" Mr. Jones and his "hired farm hands". ;)

Gert said...

I find this whole article by Baker quite bizarre. The part about Bettelheim and parents’ ‘input’ on autism is of course a welcome reminder.

But the idea that because the latter got it right on that occasion means that they might possibly get it right also on vaccinations is a real non sequitur of the ‘purest’ kind. Almost an inverted ‘once a liar, always a liar’ and equally fallacious.

What annoys me is that when a layman (that’s most of us, of course) is offered a choice between a peer reviewed paper or a scientific review and a webpage that doesn’t even remotely attempt to hide its bias, probabilistically speaking the layman should put far more weight on the former’s information than the latter’s but often does exactly the opposite.

Please don’t give me that ‘I don’t believe in experts’ anti-intellectual crap, unless you can prove you take your broken car to a potato merchant, rather than a certified car mechanic!

Hold yer fire and I'll address your immigrants point.

Gert said...

Where am I giving illegal immigrants a pass? What can illegal immigrants do to get vaccinated? That’s a real pragmatical question, you know? Surely fear of being sent back, unvaccinated of course, plays an enormous part here?

The Eurocrats aren’t experts, they’re ideologues, as well you know. Water carriers for Euro-neoliberalism, nothing more.

-FJ said...

Let me just say the the greatest advances in the Sciences have always been made by those "skeptical" of the "subjects supposed to know". And if a few thousand "Icarus'" fall into Brueghel's Bay, why does it matter? MUST we all think and act alike? Or is there room in the world for differences, even "scary neighbors" who speak a different language and worship their "house gods"? I'd like to think that there is.

-FJ said...

Surely fear of being sent back, unvaccinated of course, plays an enormous part here?

Fear is fear. Some fears are 'real', others purely 'imagined'. And since it's become "illegal" to question another's "immigration status", I'll let you decide whether or not BOTH group's fears are imaginary or not.

-FJ said...

And yes, of course I would take my car to a certified mechanic. Whether or not said mechanic always "fixes" the problem is another matter entirely. I can't tell you how many times I've had to pay for unneeded/unnecessary repairs...

-FJ said...

ps - Does the potato merchant you mentioned have a theory of automobile function diagnosis or success in repairing certain types of malfunctions?

-FJ said...

btw - A short story. When I was a boy, my father signed me up for a hitch with the Boy Scouts of Venezuela. I remember attempting to earn my "Signalling" merit badge with a group of other boys. We all made "key-sets" for practicing our Morse Code, and would sit round our Merit Badge Counsellor's dining room table practicing our sending and receiving skills. We did this for several months, but for some strange reason (not really) I was never able to send and receive at the rate of speed required to qualify for the badge. And so I moved on, to other badges.

When my eldest son was in Scouts, he came home from summer camp one year with the badge. I was shocked, and asked him how he had learned Morse so competently. He answered that he hadn't, that all he had to do was send and receive and an incredibly slow rate, but had nonetheless been "certified" by the "Master" as "competent."

Do you always trust in the Master's certifications? And does the "subject supposed to know" always "really" know?

Gert said...

The point here is not that 'experts' are always right, clearly that is not true. And fraud among car mechanics used to be rife and hasn't been eradicated fully.

And yet, all other things being equal, the certified car mechanic is the safest bet. No guarantees but better odds. I am of course assuming your potato merchant' knowledge of cars does not significantly exceeds your own, as a premise.

Gert said...

Farmer, I'm a sceptic, you know that. But I 'believe' that certain 'truths' can be proved beyond reasonable doubt. But's it's very rare, in the entire human knowledge base.

My grandpa was in the Scouts and hated it. My dad wanted to go and grandpa prohibited it. My dad offered it to me and I refused.

Granpa wanted to become a scientist but material conditions prevailed (he became a successful businessman instead). My dad chose to study history and then I chose science.

Bad synchronisation? ;-)

-FJ said...

Compulsion is a strange beast. I have no doubt that it is at times very "necessary". And yet, I think that the vast majority of people will and do voluntarily follow expert advice. And so, in cases where it isn't "necessarily" vital that all citizens comply with expert opinion, I'm inclined not to try and legislate it. And when it comes to "vaccinations", those who do so comply are at NO physical health risk from those who don't. The only risk that they pose, are to themselves.

Negative "liberty" is likewise very different from "positive" liberty. I favour the former, and eschew the latter. And those who would impose the latter, like the disciples of Hippocrates, had better be certain way beyond a "reasonable" doubt.

-FJ said...

Wolfe recounts a 1968 visit to San Francisco’s Haight-Ashbury district, one of the meccas of hippiedom. Doctors at the district’s Free Clinic, he found, were “treating diseases no living doctor had ever encountered before, diseases that had disappeared so long ago they had never even picked up Latin names, diseases such as the mange, the grunge, the itch, the twitch, the thrush, the scroff, the rot.” Such maladies made a comeback because the hippies “sought nothing less than to sweep aside all codes and restraints of the past and start out from zero.”

In short, Sixties youth rejected all precepts bequeathed by their elders—including basic hygiene. Having scoffed at accumulated wisdom of the ages, the hippies had to either put up with the rot or reacquaint themselves with common sense. Observes Wolfe: “This process, namely the relearning—following a Promethean and unprecedented start from zero—seems to me to be the leitmotif of the twenty-first century in America.”

Gert said...

I'm not sure ANYONE is in favour of compulsion, unless there are compelling (LOL) reasons for it. Adding to compulsions should be a last resort.

Unfortunately in the name of 'liberty' much nonsense is also peddled.

Hippies: that's why Beamish' 'anarcho libertarianism' would immediately be succeeded by a New Order but based on the old one. It's self-defeating unless one thinks a 'tabula rasa' style new beginning can lead anywhere which it can't.

Thersites said...


Unfortunately in the name of 'liberty' much nonsense is also peddled.


And so, also, in the name of "custom" and "tradition".

In the name of "liberty" that we allow Don Quixote to conduct his quest. Would you deny him his Esmeralda (or his Sancho)?

Isaiah Berlin, "Letter to George Kennan" (`1950)

Why is the thought of someone twisting someone else round his little finger, even in innocent contexts, so beastly (for instance in Dostoevsky's Dyadyushkin son [Uncle's Dream, a novella published in 1859], which the Moscow Arts Theatre used to act so well and so cruelly)? After all, the victim may prefer to have no responsibility; the slave be happier in his slavery. Certainly we do not detest this kind of destruction of liberty merely because it denies liberty of action; there is a far greater horror in depriving men of the very capacity for freedom--that is the real sin against the Holy Ghost. Everything else is bearable so long as the possibility of goodness--of a state of affairs in which men freely choose, disinterestedly seek ends for their own sake--is still open, however much suffering they may have gone through. Their souls are destroyed only when this is no longer possible. It is when the desire for choice is broken that what men do thereby loses all moral value, and actions lose all significance (in terms of good and evil) in their own eyes; that is what is meant by destroying people's self-respect, by turning them, in your words, into rags. This is the ultimate horror because in such a situation there are no worthwhile motives left: nothing is worth doing or avoiding, the reasons for existing are gone. We admire Don Quixote, if we do, because he has a pure- hearted desire to do what is good, and he is pathetic because he is mad and his attempts are ludicrous...

Justice Kennedy just recently found in the US Constitution a "Right" to "Dignity" (Ruling on Homosexual Marriage). Is this not precisely its' source?

Gert said...

Observes Wolfe: “This process, namely the relearning—following a Promethean and unprecedented start from zero—seems to me to be the leitmotif of the twenty-first century in America.”

Assuming you have the full text, please elaborate how 21st USA looks like a 'start from zero'. In what areas of the human experience, specifically does he claim this to be the case?

-FJ said...

Here's the original context... in this case the design of the US Navy's Littoral Combat Vessel.

-FJ said...

Back in the day, a US Navy ship was built to take casualties. Damage Control was a large part of shipboard training. The Engine Room had dozens of watchstanders, watertenders, firement, oilers, as each "control" function was "manually" controlled. Today, an unattended Engine Room is quite possible, as the Merchant Navy sails with a full ships complement of approx 32 people (12 if an integrated tug-barge unit). Hundreds vs. tens in manpower, all reductions made possible by technology. In 1976, I sailed aboard the SS President Johnson, it was designed with a satellite control system that would have allowed it to operate completely "un-manned", as it would stop offshore until a pilot and crew could board and take the ship into port. The US maritime "unions" prevented ships from being operated in this fashion.

-FJ said...

Personally, I can see a fleet of totally unmanned drones in the Navy's wartime future. Drone carriers, drone missile ships, drone submarines, ad nauseum. The weakest link today in a fighter aircraft is the pilot (limits maneuvers to 10g's).

Gert said...

Thanks!