Wednesday, March 28, 2007

Lili Marlene discovers the cause of autism in between bringing the laundry in off the line and washing some dishes

I was recently perusing some back issues of science magazines, and I came across an article about an aspect of human genetics that is interesting but is not currently connected with any “cutting edge” research or theories. As I read about the finer details of this subject I realised there was a match with many of my own observations of a group of small, isolated and apparently insignificant details that seem to be associated with autism/Asperger syndrome in some families. It was one of those “OH …. WOW!” moments that make reading about science such a rewarding pastime. The details that I remembered are the kind of odd little things that I think most people don’t consciously notice, and if they do I’m sure they put these details to the back of their minds and swiftly forget them out of consideration for politeness, good taste and saving one’s mental resources for “important things” and “relevant things”. Being the kind of person that I am, I have scant regard for politeness and good taste, and this makes life all the more interesting.

I put my observations together with the information in the article, and then I compared the resulting idea with a theory explaining autism that I’ve had at the back of my mind for a couple of months. This theory is based on what I’ve read about a major new development in genetics. All of these ideas seem to be quite compatible. I think I may have gone a long way towards explaining, in layman’s terms, the biological developmental mechanisms that bring about the brain differences that result in inherited autism. My idea may even be a re-conceptualization of what kind of phenomenon autism is, biologically. At first I thought there are at least two different forms of “pure” heritable autism, resulting from genetic processes that are of the same general type, but different. After thinking about is for a while I have concluded that the difference between the two types (and there are definitely at least two sub-types) is probably more quantitative than qualitative in nature.

My theory is nothing like any that I have read in press reports of “cutting-edge” autism research. A quick search of PubMed suggests that no one in The World of Medical Science has yet made the connections that I have made. A look through a text on the genetics and biology of autism comes up blank. All the clues are there, right under our noses, but it seems no one else has thought they add up to anything, but I did find something on the internet that really made stop and think. Another amateur scientist like my self has come up with a well-developed theory of autism that is as original as my own, and there are some very spooky similarities between that theory and mine, in fact the empirical observations that kicked-off my theory could look like exciting evidence supportive of the other one.

Sadly, I can’t share my ideas with anyone, as I don’t want to help scientists in their ambition to discover the biology behind idiopathic autism, because they will surely use this knowledge to try to prevent and “cure” autism, and what sane person would want that? It is a comfort to know that only amateurs like my self appear to be on the right track, and I can rest assured that our ideas, even if they were thoroughly explained, argued and published, wouldn’t change the trajectory of autism research in academia. I have no relevant degree or academic position. People like me are nobodies and our ideas count for nothing.

Obviously there are many different forms of quasi-autism or secondary autism. Scientists have estimated that 10 to 15% of people diagnosed with “Autistic Disorder” have some diagnosable genetic syndrome. One hopes that this will continue to confuse the picture for the boffins. The fact that some leading autism experts are still talking about “autism” as though it’s just one biological syndrome shows how laughably rudimentary their ideas apparently are. Perhaps they are just dumbing-down their ideas for the popular press and parents. Technicians in labs might do the data crunching to find out which genes are associated with the autistic spectrum soon, or may have already, but it could take the scientific establishment years to discover as much about the biological processes as I believe I have figured out with the aid of my eye for detail, my long memory for trivia and my insider knowledge.

It’s pretty obvious that many members of the autism establishment still don’t have a firm grasp of what autism really is. They claim to be researching what causes autism, when in fact they are often really researching what causes people to be diagnosed with autism. The DSM states that “Autistic Disorder” is “sometimes observed in association with a neurological or other general medical condition (e.g., encephalitis, phenylketonuria, tuberous sclerosis, fragile X syndrome, anoxia during birth, maternal rubella).” None of these conditions are new to science, and neither is brain damage, but when was the last time that you heard a curebie lobbying for better prenatal and obstetric care for all pregnant women, and more funding for children’s hospitals and neonatal care units?

Some researchers claim to be researching the cause of autism when they are only observing one of many different aspects of autism. One by one different theorized characteristics of autism have their 15 minutes of fame as “the key that will unlock the mystery”. Last week it was mirror-neurons, this week its timing mechanisms gone bung. I can’t keep up with it all. This is an approach to the problem of explaining autism that will, with any luck, keep the present state of knowledge in a state of uncertainty, and will also cause disenchantment among curebie parents of autistic kids, as they watch trendy new theories come and go without anything really changing except their bank balance.

Despite all the money that autism research has had thrown at it by governments and charities this is as far as we have come. The autism establishment might have two clues to rub together, but it’s pretty hard to find them in amongst the big trawl of red herrings. It’ll take a lot more clues to yield the correct answers to the big questions. The good news is that a “cure” will never be anything more than a sick fantasy. The bad news is that 21st century eugenics may wipe out a hugely valuable and wondrous form of human diversity before we ever get a chance to understand it.

Sunday, March 25, 2007

I think this article in New Scientist is fascinating. I'm sure there's some relevance to autism in it even though autism or AS are not mentioned. Already aspies have had a lively online discussion in one forum about the moral reasoning in the study.

When it comes to making decisions about moral dilemmas, I ask myself "What would Spock do in this situation?"

"Impaired emotional processing affects moral judgements"
by Roxanne Khamsi 22 March 2007 New Scientist
http://www.newscientist.com/article/dn11433-impaired-emotional-processing-affects-moral-judgements.html

Thursday, March 15, 2007

What do the Richter Scale, Beethoven's 9th Symphony, Pokemon, the book Subhuman Redneck Poems, the first modern abstract paintings, Newtonian physics, the book Born Free, the song Get Free by the Vines, Microsoft Corporation, the Official Monster Raving Loony Party, BitTorrent, Alice's Adventures in Wonderland, the transistor, Ireland's Constitution, the Blues Brothers, the Turing Test, the movie Charlie and the Chocolate Factory, Enoch Powell's "Rivers of Blood" speech, the movie 2001: A Space Odyssey, Einstein's theory of relativity, the La Sagrada Familia basilica in Barcelona, and this silly blog that you are now reading all have in common?

The List now has 86 names in it.

http://incorrectpleasures.blogspot.com/2006/09/referenced-list-of-famous-or-important.html

Sunday, March 04, 2007

Have autism researchers discovered something very interesting about human relationships and autism as a form of human diversity?

Have autism researchers discovered something very interesting about human relationships and autism as a form of human diversity?

Autism researchers John Constantino and Richard Todd have done one of those studies comparing autistic traits in parents and their offspring, with the aim of researching how autism is inherited. As far as I can tell the subjects of this study were “a population-based sample” that “included few individuals affected at clinical levels of symptomatology” of autism spectrum conditions. The subjects were twin pairs (predominantly female I believe) and their biological parents. Everyone was assessed with the Social Responsiveness Scale (SRS) which is “a quantitative measure of autistic traits”.

What the researchers found was that “intraclass correlations for pairings of family members were highly statistically significant”. No surprises there. Family resemblance. They found that autistic traits are “extremely highly heritable”. No Shit Sherlock! They also found evidence consistent with assortative mating. This is no surprise, as it is known that “like attracts like” in human relationships and that’s what “assortative mating” is. But the thing that I found interesting about the findings was that it wasn’t just the case that there were a few oddballs with very “empathizer” or very autistic “social skills” pairing up at the extreme ends of the natural distribution of “social skills”. What the researchers found was explained in a radio interview on Australian radio; “the same type parents outnumber the mixed type parents by something like 4 to 1. So there is a very strong inclination for these individuals, at least at the extremes to find each other.” I interpret this to mean that the study suggests that a large majority of couples are matched with regard to how they would score on the SRS. When it comes to intimate relationships, humanity may be highly segregated, something like a naturally occurring caste system in marriage.

Why do I think this is all so interesting? Firstly, it seems to confirm that autism isn’t just some tragic medical disease that could have sprung up or mutated into existence overnight, later spreading like an epidemic. It shows that autism is like hair colour or skin colour or intelligence level, it is one extreme value of an essential human trait. Just as people have height that is more or less tall, people also have ways of interacting with others that are more or less autistic. Mercury poisoning conspiracy theorists please take note! How many times do you need to be told that it’s in the genes and it's natural?

Another thing that I think is significant about these findings are that it is a piece of scientific evidence supporting one of the claims that the activist group the Aspies For Freedom have made in their (our) request for autistic people to be officially recognized as a social minority group. One of the characteristics of a social minority group is that members tend to intermarry. This study has not only found evidence strongly suggesting that this is true, they have also found that “it is possible that mate selection occurs on the basis of social impairment, social competence, or other characteristics that closely correlate with SRS scores.”, and in that quote the researchers are not just referring to the autistic, they are referring to people in general.

Another point that I find interesting about these findings is that in some ways it is compatible with the theories about autism that have been written about by Professor Baron-Cohen and other researchers at Cambridge, but in another interesting way it appears to subvert part of this grand theory of autism. It seems perfectly possible to me that people who score high on the SRS might fit the stereotype of the systemizer or the autistic as described in Baron-Cohen’s book The Essential Difference. Kids who score high are described as “odd” and “very nerdy” according to the Constantino and Todd. Interestingly I could not find much description of the type of person who scores very low on the SRS. If these people have difficulties or deficits of any kind, the researchers don’t seem to be at all interested in finding out! People scoring low on the SRS are supposed to be “highly socially competent”, so there’s no reason to believe they aren’t the “empathizers” that Baron-Cohen has described in his book.

The marriage between the findings of this study and Baron-Cohen’s systemizer-empathizer theory falls into conflict when one ponders how these marriages between similarly-minded people are possible in a world that does not yet legally recognize same-sex marriage. To simplify Baron-Cohen’s theory, while looking at page 150-151 of his book, many people have a brain type that is a balance between empathizing and systemizing, while males are generalized as having a systemizing type brain and females are generalized as having empathizer type brains (already this theory seems inconsistent, doesn’t it?). Autistics are described as having extreme systemizer brains, and the people who are theorized as having extreme empathizer brains are undiscovered territory. The Constantino and Todd study suggests that most people marry others with similar brain types, so explaining marriages between the “balanced” people in Baron-Cohen’s scheme isn’t a problem, but one wonders where do systemizer males find systemizer women to marry, and what kind of guys do empathizer women marry? The kind of guys who like other guys? Are there really more empathizer males and more systemizer females than Baron-Cohen’s book suggests? Do systemizers and empathizers really need to gain an understanding of people who are their opposite type? Do most of these types of people get through life happily by simply avoiding contact with those of their opposite type?

I’m not the only person who has wondered if the often described social difficulties that often happen between autistic and non-autistic people are not always or solely due to “lack of social skills” on the part of the autistics. I believe mutual incompatibility in all kinds of social situations between AS and NT could be very important. I don’t claim that autistics always get along nicely, but I do think it’s interesting how long our marriage has lasted compared to our neurotypical and mixed-marriage age peers’ marriages. Which relationships last longer or are the most happy; mixed marriages, high-SRS-scorer marriages or low-scorer marriages? If there’s anything good at all about marriages between high-scorers on the SRS, a lot of autism experts have a lot of explaining to do.

Baron-Cohen doesn’t know who these people are who have excellent “social skills”, and Constantino and Todd don’t seem too interested in them. Everyone appears to assume that they are doing just fine. But if these people are impaired in the area of systemizing, they might have problems in life. Are these the people who don’t know how to turn on a computer? Are these the men who never bother to look under the hood when buying a used car? Are these the kids who draw stick figures in art classes? Are these the teens who get by at school by copying their classmates work and opinions? Are these the people who don’t have fun assembling Ikea furniture, or who never read anything more theoretical than New Idea magazine? Are these the people who have the attention-span of an insect? Are these the Australian advertising executives who made an advertisement for a car tyre dealer franchise which showed a mechanic waving a hand power drill in front of a car tyre? Is it possible that the mechanism of matching of couples according to SRS scores that was found to be naturally operating is not solely selection by social skills, but is a two-way street? Are systemizing skills being observed and actively sought after by some, and selected for when choosing a mate? Does this explain why some aspies cite deficits of neurotypical people as reasons why they left relationships with these people? “He didn't know what to do with a leaking water pump!” “She spent too much time with her friends, and she was so stupid.”

P.S.
Another flurry of questions has come to mind. If people who score high in the SRS (autistics, near-autistics and systemizers) are as socially and emotionally crippled as current theories of autism and gendered brains suggest we are, shouldn’t marriages producing children between high-scorers be exceedingly rare? Shouldn’t most of these people be unmarried, and shouldn’t marriages between such people be so unstable and conflict-riddled that they last barely longer than the life-span of a highly unstable radioactive chemical element, and shouldn’t these pairings be too rare to be found in studies like the one done by Constantino and Todd? Baron-Cohen theorizes that autism is the result of marriages between systemizers, but does he need to explain where these systemizer females come from and how and why do these apparently doomed marriages start and survive? There seems to be a contradiction between Baron-Cohen’s idea that there is assortative mating between systemizers, and his explanation of what systemizers are like as people. The stereotypes of autistics and males depicted in Baron-Cohen’s book The Essential Difference are of people who can barely bother with relationships. Autism experts generally explain away aspies who are in happy relationships as being the lucky beneficiaries of saintly, tolerant, empathic partners, but if systemizers tend to marry similar people, where’s the nurturing, saintly partner? One has to wonder, if this is all true, what’s holding all of these high-SRS-scorer marriages together? What is likely to collapse under it’s own contradictions sooner; a marriage between the socially inept or Baron-Cohen’s grand theory of autism? You know what I’m betting my money on!


Sources mentioned

J. Constantino, R. Todd
Intergenerational transmission of subthreshold autistic traits in the general population. Biological Psychiatry, Volume 57, Issue 6, Pages 655-660
http://cog.brown.edu:16080/courses/cg63/AutismGeneticTransmission.pdf

Autism Spectrum Disorder, The Health Report, Radio National, Australian Broadcasting Commission, April 24 2006.
http://www.abc.net.au/rn/healthreport/stories/2006/1619796.htm
Isn’t it time to actually DO something?

Do you think it is fair that some people in our communities, all around the world, are being denied the right to earn ourselves a living and contribute our abilities and gifts back to society, simply because of our body language, divergent thinking styles, personality traits or minor eccentricities?

I don’t think it’s fair at all, but this situation isn’t going to change until people like me, and the aspies who I know personally, are given the recognition and the legal protection that we need, not necessarily or only as disabled people (we are capable and intelligent people), but as a minority group that has been the subject of unfair discrimination probably since the beginning of humanity.

If you are a British citizen or a resident, or are a British expatriate, please have a look at this E-Petition to the Prime Minister to give minority rights to individuals on the autistic spectrum, and please sign it if you are eligible to participate. It can be found here: http://petitions.pm.gov.uk/autismrights/

Every day autistic people are being discriminated against because of our autistic body language or autistic way of thinking or other autistic traits. The people doing the discriminating may not know that it is autistic people that they are treating unfairly, and the victims may not even know that they are themselves autistic, but that doesn’t matter, it’s unfair and unjustified discrimination just the same.

Autistic people who are fully capable (or even uniquely gifted) as workers can be passed over in favour of non-autistic job applicants in job interview situations because we may not be very good at "selling ourselves". I remember when I lost the temp job that I had been doing for months to another job applicant who was a newcomer to the organization. At least my boss’s supervisor had the guts to tell me why she gave the job to someone else; "You’ve got to learn how to sell yourself in job interviews. You need to smile more …." I live for the day when denying a person a job because of their autistic demeanour or atypical body language will be illegal.

It’s an autism cliché that autistic people avoid eye contact. This isn’t true in all cases. Some aspies have a tendency to look others in the eye for longer than is the norm, which can also give an unusual impression. Some aspies don’t smile a lot naturally. In general we tend to be less expressive in our facial expressions. It’s a job hunting cliché that job applicants are supposed to look people in the eye, give a friendly smile and look calm and confident. The unwritten rules of the job interview appear to have been written with the explicit aim of screening out, or discriminating against, autistic people of all levels of ability.

Many aspies like my self are capable of intelligent and logical speech, but are still not charmingly articulate and witty the way many ordinary people are. We don’t have the "gift of the gab" and we might not laugh at the kinds of jokes that appeal to the masses. We often don’t understand trendy catch-phrases or popular idioms, because we are often pretty much "out of the loop" with regard to gossipy, social chit-chat. If we do have friends, they may not the kind of people who use trendy language. Aspies often have voices that are unusual in some way. Some of us have monotonous-sounding voices, which many people associate with intellectual impairment, although intelligent and capable people can in fact have this kind of voice. A few very talented individuals such as billionaire Bill Gates (thought to be an aspie) and Hollywood actor Sylvester Stallone (who has an autistic son) manage to succeed brilliantly in spite of their "macho mumble" monotones, but mere mortals like my husband and I must contend with everyday prejudices. Are you beginning to realize how unfairly and unnecessarily disadvantaged an aspie can be as soon as she opens her mouth to speak in a job interview?

If by some divine intervention an aspie is given paid employment, her troubles might only just be beginning. It’s an autism cliché that aspies are often bullied at school. I hate to have to tell you that the victimization doesn’t necessarily stop in childhood or adolescence. Aspies can be bullied, excluded or in other ways disadvantaged in work settings, by one other person or by many others. There are many different reasons why this happens. It may be as simple as people taking offence to a co-worker who does not want to be a part of the social scene at work. Many aspies need to spend some time alone in their day as they find contact with many other people to be overstimulating or tiring. This may mean that an aspie prefers to spend their meal breaks alone or reading a book, and does not want to "go for drinks" with colleagues after work. This can be interpreted as a social snub or deliberate offence by their co-workers. The loner may simply be disadvantaged by not keeping up with important office politics.

One autistic behaviour that can cause great unpopularity and consternation in work settings is the unfortunate tendency that some aspies have to tell the truth, often and without fear or favour. One of the first "social skills" that children learn is to lie convincingly and appropriately. Meeting a person who lacks this particular social skill can be quite a shock.

I know aspies who have been bullied out of the workforce by co-workers or by work supervisors. I know aspies who have given up on the whole idea of job hunting after figuring out that it makes no difference how many degrees they have or how perfect their resume is, it’s their body language and "live performance" in the job interview that will always be the final hurdle that they will not be allowed to clear.

I can explain all of these issues repeatedly to some people, but they still don't seem to "get it". They seem to think there is some course for learning "social skills" that could make these issues vanish, or that some lack of effort or self-esteem is the real issue. Another self-diagnosed aspie writer has explained my point of view so nicely that I'd like to quote from his work. I hope he doesn't mind.

[For decades, I accepted what well-meaning friends and the self-help books incessantly preached — that I had simply picked up some bad habits which I could overcome with determination and practice — but I now recognize that these inclinations are part of my fundamental identity. I am what I am, and I can no longer listen patiently to purportedly helpful pep talks along the lines of "All you have to do, Gary, is maintain eye contact and smile a lot and make small talk, and you'll get along fine." In reality, offering me such comments is like telling a gay man, "Now, I'm sure if you just tried a little harder, you could learn to like girls."]

That is a quote taken from an article by Gary Westfahl, in which he claims to have been described by a professor as "the World's Worst Interview"; http://www.locusmag.com/2006/Features/Westfahl_HomoAspergerus.html

I don’t know any aspies who don’t have unusual or brilliant gifts to offer. The most original thinkers that I know are aspies. The most generally intelligent people that I know are aspies. Some of us love to do jobs that other people hate to do. I know aspies who not only don’t mind working alone solving problems with machines for many hours at a stretch, this kind of work is their favourite pastime. I know aspies who can happily write or process information for hours. Why should we be the ones who are stuck on the dole or left to struggle financially in McJobs, while know-nothings and shysters fly high?