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.
Lili Marlene discovers the cause of autism in between bringing the laundry in off the line and washing some dishes originally appeared on March 28, 2007 at Incorrect Pleasures, and is reproduced here by permission of the author. Shift Journal has not verified the claim made in the current tagline at Incorrect Pleasures, “Every time you pity an autistic person a kitten dies.” Neither, however, have we been able to rule out its veracity. Please proceed with care.
Lili Marlene on 05/10/10 in Autism, featured | No Comments | Read More
