Friday, May 14, 2004

Is autism always a bad thing?

Yup, like my previous question, it seems very strange. After all, it's a debilitating illness that ruins the lives of those who care for the sufferers and causes them heartache, not to mention the misunderstanding, at best in the wider world. I lived for two years with a cousin, whom I am convinced suffers from the milder form of autism, Asperger's Syndrome.

The symptoms of autism are particularly heartbreaking. Just look at the long list displayed on this page:
Possible Specific Symptoms of Autism

Humans are primarily social animals. We have been so, since the Early Tertiary and we are intensely disturbed by people who seem unable to make connections with other people. Autism is an extreme version of this "cold fish" syndrome and it is deeply unsettling to encounter.

So how the hell could it be a good thing? Well, autism is a disease of degree and it comes in many forms of differing intensity. Many autistic syndromes are covered under the umbrella term "Asperger's Syndrome" (Online Asperger Syndrome Information & Support). Look at this passage from the page:

Individuals with AS can exhibit a variety of characteristics and the disorder can range from mild to severe. Persons with AS show marked deficiencies in social skills, have difficulties with transitions or changes and prefer sameness. They often have obsessive routines and may be preoccupied with a particular subject of interest. They have a great deal of difficulty reading nonverbal cues (body language) and very often the individual with AS has difficulty determining proper body space. Often overly sensitive to sounds, tastes, smells, and sights, the person with AS may prefer soft clothing, certain foods, and be bothered by sounds or lights no one else seems to hear or see. It's important to remember that the person with AS perceives the world very differently. Therefore, many behaviors that seem odd or unusual are due to those neurological differences and not the result of intentional rudeness or bad behavior, and most certainly not the result of "improper parenting".

By definition, those with AS have a normal IQ and many individuals (although not all), exhibit exceptional skill or talent in a specific area. Because of their high degree of functionality and their naiveté, those with AS are often viewed as eccentric or odd and can easily become victims of teasing and bullying. While language development seems, on the surface, normal, individuals with AS often have deficits in pragmatics and prosody. Vocabularies may be extraordinarily rich and some children sound like "little professors." However, persons with AS can be extremely literal and have difficulty using language in a social context.

Sounds awful, doesn't it? But look at some of the symptoms:

"They often have obsessive routines and may be preoccupied with a particular subject of interest"

"It's important to remember that the person with AS perceives the world very differently."

"By definition, those with AS have a normal IQ and many individuals (although not all), exhibit exceptional skill or talent in a specific area. "

None of this would be overly important, were it not for the fact of the sheer numbers of people who exhibit even very mild versions of these syndromes. It's particularly prevalent in males, to the point, I believe, of being nearly exclusively so.

This morning I noticed this guy who I have seen on the train before. He was standing on the platform and he had the classic old trainspotters gear: beard, glasses, tweed coat, large camera. He may not have been a train-spotter, but he got me to thinking. Like most men, I have had the ability at times to get obsessively wrapped up in my hobbies, to the exclusion of all else. For a psychological "feature" like this to be so prevalent in the human population, it has to have an evolutionary basis. Some aspect of this syndrome must have given our ancestors a competitive advantage over the other human species and the predators. But what was that advantage? Well, It's hard to say when this "feature" was first seen in human populations, but you can see where it might have suddenly found itself as an advantage.

What is on of the essential features of human civilisation? Cities, farming, religion? Well, these are all important, but they are quite late additions to the human experience. One of the first and most important innovations of humanity was division of labour. No other large animal has a system where they differentiate between the responsibilities of the various members of the herd. All cows eat grass and no one cow sits apart making grass pies or fashioning cow fabrics. Humans have people who hunt, cook, fashion weapons and cloths, rule, all sorts of things. Many of these tasks require great concentration and often force the person doing them out of the political games that the general populace would have to play. Think of what a great advantage it would be to one particular group to have one of their number who was quite happy to sit there, knapping flints day after day, unconcerned about overthrowing the tribe's leader or securing for himself the sexiest little Australopithecus female in the group. Much of human civilisation owes its greatest advances to men and women of seriously impaired social ability, but seriously improved powers of concentration. The stereotype of the asocial scientist squirreling away in his lab is so famous, it should be an archetype and indeed it is well known that scientists, in general, do not make good PR people.

Isaac Newton was famously disagreeable and was a recluse for much of his life, but Western civilisation is built upon his work. He was often so caught up in thought that he would go to rise from his bed, only to be held there by the waves of cogitation that would pass through his head.

One of the main reasons we have a big brain is to figure out all the various allegiances and changing circumstances of a large group of our peers and how to manoeuvre ourselves within that group. You can imagine how much brain power is then released when you don't feel the need to do all of that.

We may owe more to autism as a species than we think, but it's a hell of a price to pay for some people.

Wednesday, May 12, 2004

Tragic end of the boy who was brought up as a girl

I'm including this, because I regard it as an example of a person who was used as an experiment. No justification, whether "scientific", religious, political or otherwise can justify messing with someone like this

Tragic end of the boy who was brought up as a girl
David Reimer was hailed by scientists as a triumph of nurture over nature. But as his suicide shows, this was a terrible mistake
By David Usborne
12 May 2004

Two weekends ago, 38-year-old David Reimer told his parents in their shared hometown of Winnipeg, Canada, that although he was going through a rough patch - recovering from the death of his twin brother two years ago and from his separation from his wife - things would getter better very soon. He didn't explain how.

Now his family knows. On 4 May, Reimer took his own life. While his recent ills surely contributed to the despair, his mother knows there was more to it than that. His death was the final coda to a life that became a world-renowned case study in the perils of tampering with gender. During the span of his life he had been a boy, then a girl and then a boy again. "I thought I was an it," he once said.

The wrenching story of David (baptised as Brian) Reimer began with a freak snowstorm in 1966. His parents, working-class people from the plains of Manitoba, drove him to the local hospital for a routine circumcision. He was eight months old. But the regular surgeon had not made it in and an assistant took over. She botched the job. A cauterising implement burned David's penis - and it fell off. A witness later said that when the mistake was made there was a sizzling sound, like a steak being seared.

Left with a child with testicles but no penis, his parents were unsure what to do. Then, one day when the boy was more than a year old, they learned about a doctor in Baltimore who had gained a reputation of helping people of ambiguous gender. His name was John Money and they went to see him.

It was Money, a native of New Zealand and the author of some 40 books on human sexuality, who persuaded them that the best course of action was to transform their son into a daughter. He recommended surgery, including clinical castration, and hormone treatment to turn young Brian into a girl. His parents agreed and the treatment began. Brian became Brenda and long trousers gave way to skirts.

For Money, who had pioneered studies in sexology at Baltimore's prestigious John Hopkins University, it was an irresistible challenge. He was a main proponent at the time of the theory that was briefly popular in the Sixties and Seventies, that gender identity was not necessarily predetermined in the womb. It was more about environment. In the controversy that still rages today over the balance between nurture and nature in determining our sexual selves, Money was a hero of the camp favouring nurture.

Better still for Money, the Reimer case offered an unheard-of opportunity to prove his theory. The patient had an identical twin brother, who was indisputably male. He had an experiment, therefore, with a readily supplied control subject. Two human beings conceived in the same womb with the same genetic profile. But nurture, with help from the knife and some pills, would demonstrate how their gender paths could be separated for ever.

And all seemed to go well. All remnants of Brenda's male genitalia were gone and her parents did all they could to raise her as a daughter. All the while, the so-called John/Joan case, expounded with pride by Money, a fine writer and charismatic lecturer, was celebrated by science and sociologists everywhere. The gender-fixing procedure was adopted at hospitals worldwide. And the Money theory was also embraced by the then burgeoning feminist movement as proof that social expectations of gender were misplaced. The male-female axis, they declared, was not set in stone. It was fluid and dynamic.

The John/Joan case also helped inform treatment of hermaphrodites, who are born with genitalia so ambiguous that hospitals cannot determine whether at birth the babies are boys or girls. In the vast majority of these cases, parents are told that their children should be raised as girls. Meanwhile, Money's reputation continued to grow. Considered one of the world's leading sexologists, his books included The Breathless Orgasm (1991), Venuses Penuses (1986) and Gay, Straight and Inbetween (1988.)

But things in the Reimer household were not as people imagined. It was only in 2000 that the true story of Reimer's experience reached a wide public. By then, out of dresses and bras and back in the world as a boy, Brian - by then renamed David Reimer - had decided that enough was enough. The truth had to be told. By going on Oprah Winfrey's show and collaborating on a book with a well-known New York journalist, he revealed that Money had consigned him to a childhood of humiliation, confusion and misery.

"David was a hero," said Milton Diamond who collaborated on the first scientific papers to expose the disaster of the John/Joan case. Commenting on his death, he said: "David didn't give permission for what was done to him. Even though he didn't have a penis, he still knew he was male."

It was when Reimer was 13 and in therapy with a counsellor provided by the Winnipeg school system that he learned for the first time what had happened to him. Already he had been stigmatised by fellow classmates. They had seen his ungainly gait, the muscles that, despite the removal of his testicles, had begun developing on his neck and arms, and his lack of interest in boys. "They wouldn't let him use the boys' washroom or the girls'," his mother, Janet Reimer, recalled. "He had to go in the back alley."

That was when he rebelled, demanding that he be allowed to go through more surgery to restore his manhood. It was a transition that would be traumatic for any person, let alone someone in their early teens. The breasts that had developed because of the hormone injections were removed by mastectomy. And he opted for reconstructive surgery to build back the penis of which he had been robbed after birth.

The debunking of what Money had wrought first began with the publication of the paper written jointly by Diamond and also Dr Keith Sigmundson, who was the supervising psychiatrist for Reimer from the age of eight until 20. Published in the relatively obscure Archives of Pediatric and Adolescent Medicine in 1997, it outlined Reimer's rejection of being a girl.

"By the time Reimer was 11, the whole experiment was falling apart," noted Sigmundson. "From that point on he sought out all the surgery. He totally changed how he was presenting himself and struggled with a number of operations. He eventually lived his life as a man."

Sigmundson added that the case should serve as a caution to those still drawn to the nurture over nature idea. "There are certain immutable things that happen in your chromosomes and in utero that develop the gonads that have an impact. Reimer didn't adjust well to being a girl at all and began having difficulties at school."

Most experts today contend that there is no overriding the gender determinants that are in a person before birth. But that does not mean that environment does not play some part. "The Reimer case has taught a lot of people in the field that things are a lot more complex when it comes to gender than people originally thought 30 years ago," argued Ken Zucker, who is chief psychiatrist at the Toronto Center for Addiction and Mental Health.

"Where we've really had a lot of advances is in recognising biology has a predisposing influence on gender identity and gender roles. But the environment is also important."

Diamond was shocked by the news of Reimer's death. But he hoped lessons had been learned. "His life was very difficult. I think the legacy is the whole issue of how people identify and see themselves as male and female. It's not as simplistic as putting people into blue rooms and pink rooms. Certainly our environment makes a difference and how we're brought up makes a difference. But we come to the game with our own inherent natures and how those things interplay can't be predicted."

It was the book, written with Rolling Stone journalist John Colapinto, entitled As Nature Made Him: the Boy who was Raised as a Girl, that brought the calamity of Reimer's situation to the attention of the world. He was inspired to write it after seeing an account of the Diamond-Sigmundson paper in the New York Times. Colapinto cast Money as the villain of the story, although the doctor, who is now 83, never publicly responded to it. The appearance with Oprah Winfrey coincided with its publication. "I thought the Reimers were just the most dignified, fantastic people," Colapinto commented in an interview at the time. "I think in a way these wonderful working-class people from Winnipeg just kind of stepped onto the world stage on Oprah and were a lesson to us all in dignity and survival and openness and courage."

"Scientists had just relied on this case as being a precedent for the fact that you could assign the sex and gender to children," Colapinto added. And his book had a strong impact. "Those who believed that and taught it and based their clinical practice on it, and who actually performed similar procedures, were scandalised."

The same sense of scandal was what drove Reimer to collaborate with the journalist and expose his pain to the world. He was angry about what had happened to him and by the discovery that Money's tampering with him was being replicated in clinics and hospitals around the world. He wanted it to stop.

"I was surprised that other people wound up going through what I had, because of my so-called 'success story' that wasn't so much of a success," he said. "You were expected to wear girl's clothing and to behave in a certain manner and you were expected to play with girl's toys." But he never believed he was a girl. "I thought it was very ignorant for them to think I was no longer a male because my penis was burned off. A woman who loses her breasts to cancer doesn't become any less of a woman."

His family is left now to grieve for a loved one who was subjected to such humiliations without his consent. For a while, there had been hope that he had put his life back on the rails. While the years of treatment had given his features the fine lines of femininity, he was widely accepted in Winnipeg as a man once more. He got menial jobs and finally found a wife. He became stepfather to her three children.

The loss of his brother, his family said, hit him hard. His twin had also taken his own life and for the past two years, David had made the pilgrimage to his brother's grave every day to arrange fresh flowers. Then the wife with whom he had established the traditional male role walked away, with her children. He slumped into depression. Worse came soon after when he lost his job. His mother, Janet, came closer than anyone at the funeral last Sunday to blaming Money for what had happened to her child.

"He was a hero," she whispered to a reporter. "He showed the doctors, he was a worldwide hero." Asked why she thought he had finally taken his own life, she responded: "I think he felt he he had no options. It just kept building up and up." His father, Ron, shook his head when approached by reporters and said he had nothing to add.

Janet, however, tried to pay tribute. "He was the most generous, loving soul that ever lived. He liked music. He liked jokes. He was a very funny guy. He was so generous. He gave all he had."
12 May 2004 11:37

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Friday, May 07, 2004

Is Language interesting?

It seems like an odd question, after all language is like air, it's all around and we all need it. We may live in different qualities of language as much as we do of air, but we assume it's just a fabric of life and it is no more necessary to discuss language than it is to equip a bicycle with a fish friendly saddle.

But, our language reveals as much about us as a people as our cloths, food or public monuments. Take English, for example. It's a mish-mash of confusing influences and downright fudging.

Melvyn Bragg presented a very interesting TV show on the history of the English language some time back on ITV (the only reason I will ever watch that moronic channel) and he made a very interesting point, which addressed something that had been bothering me since I was a kid.

Simply put, why is the meat that you get from a cow called beef, that from a sheep called mutton and the poor little piggy gets turned into pork? After when served with the dismembered remains of a waterfowl, it was called duck and chicken was chicken, so why did the farm animals lose their identity going from stable to table?

Well, it was quite simple as he explained. When the Normans arrived in England, they quickly set about stamping out the relatively egalitarian Anglo-Saxon way of doing things and enforced the feudal system on the land. This meant that the previously mostly free-living Anglo-Saxons were now all effectively the property of their lord. All of their produce was his, too and like most kleptocrats they took the best bits for themselves.

Hence the staple meats of the farm ended up on their tables and the peasants were left with the rest. So, while the lowly serf looked after the cow (cu in Old English), the meat was eaten at the table of the French speaking gentry and was called "boeuf" leading to our modern word beef. The sheep gave the lord his dish of "mouton" and the pig was consumed as "porc".

So, when you ask for the roast beef sandwich with the mustard, you are unknowingly acknowledging the mastery of the Normans over the Anglo-Saxons. That's a lot of politics for one meal.