Sunday, January 30, 2011

has holy grail molecular pathway for autism been identified?

An old acquaintance of mine sent me this interesting piece by economist and mutual fund manager, John Hussman, who has an autistic son and apparently moonlights as a genetic researcher with some other persons. The research involved genome wide sequencing of two different datasets, using a sophisticated computer algorithm that I don't really understand that studied what were called single nucleotide polymorphisms where there are normal variations in the genes of various people some of these can have risk alleles which are genes or a cluster of genes which can cause or predispose someone to conditions like Alzheimer's disease, diabetes, or autism.

From what I understand of the article, they were saying that there are so many possible locations that could result in genes which cause alterations to proteins or instructions on how to construct neurons, etc., it is infeasible to examine them all by conventional methods. However, many of the SNP's that could cause autism might be in very close proximity to one other and the problem could be confounded by a large "noise to signal ratio". The researchers Hussman was associated with apparently used an algorithm which helped with the signal to noise ratio in finding candidate alleles that could cause or predispose someone to autism. Two different data sets, one from the University of Florida and another from the autism genetic resource exchange were used with the idea is that you might be able to find locations for the same candidate genes in two different data sets, then this might make a clearer picture for a possible genetic etiology of autism.

I have written in the past about the simplistic statements that Simon Baron-Cohen and Temple Grandin and perhaps others have taken towards the genetics of autism in that perhaps there is only one or a few "autism genes" that have stayed in the population due to a protective effect and are responsible for every invention from the spear to the cell phone.

As Hussman correctly states, the problem with this thinking is that instead of a few genes, there are probably hundreds of genes that operate in concert with each other which could have a small effect on many individuals or a large effect on a few individuals. But what was intriguing is that these hundreds of genes could operate on a common biological pathway, which might make an understanding of the etiology of autism clearer.

With this computer algorithm, the researchers claim to have found a biologic pathway which could explain at least some aspects of autism. The biologic pathway regulates how axons and dendrites in a neuronal brain cell are formed and guides them to the appropriate places. For those who don't know, brain cells communicate with each other chemically and electronically by sending electrical pulses down what is called the axon of the cell. Then a chemical is released into a space called the synapse which is received by a dendrite of a neighboring brain cell. If something is amiss in genes that regulate this, then cells won't be able to communicate with each other properly and this lack of adequate transmission could cause the debilitating features of autism.

Though admittedly I am far from a science expert, one problem with this research that I see is that autism is likely not 100% genetic, since though we have high concordance rates in identical twins, it is not 100%. Likewise, as I remember correctly some studies have shown fraternal twins have higher concordance rates than siblings who are not twins; it would be the same if autism were 100% genetic. So, there may be something else, besides abnormalities in single nucleotide polymorphisms such as some environment insult during the prenatal period that could cause a person to become autistic, though it is possible this pathway found by Hussman and the others might predispose a person to autism.

I suppose Lorene Amet, a prolific commenter on autism's gadfly who has a doctorate in molecular biology can critique this research and correct me where I am going wrong if anywhere. Or possibly someone else better trained in science than I am.

However, this research holds out hope, maybe not for me personally, but perhaps other persons who have yet to be born. If there is a common pathway influence by genetic mutations that results in abnormal cytoarchitecture can be found for many cases of autism, perhaps interventions could be done to prevent the person from becoming autistic in the first place and having to live with this disability. Hussman seems to imply this is the case.

As I said, I wish I had more expertise on science so I could understand this stuff better and the possible implications it might have for helping or possibly even curing or preventing autism in the first place.

Tuesday, January 25, 2011

Equality Demands Responsibility Revisited

As regular readers of autism's gadfly know, a few years ago neurodiversity activist Ari Ne'eman wrote an essay entitled Equality Demands Responsibility in which the gist of the essay was that persons on the spectrum should not use insanity pleas or diminished capacity defenses when charged with crimes. That if we were to state a cure was not necessary then an autistic person was expected to obey the law. If not, they should be prosecuted and suffer the same consequences as the neurotypical law breaker.

A few years later, Ne'eman, and his organization, the autistic self-advocacy network, digressed from the tenets of this essay, when a young special education student was charged with assaulting his teachers. I wrote about this elsewhere. This youngster should not be prosecuted for his crime because of his autism ASAN said. The Midnight in Chicago blog in a recent post has suggested if I am not misunderstanding them is that those who engage in autism advocacy may have ulterior motives for doing so. They write:

Again, I say to you that it is important that you carefully evaluate the motives and intentions of people and organizations in the advocacy field. Often times they are advocating for personal or selfish reasons, rather than advocating in the interest of seeing that true justice is served to those on the autism spectrum

This could serve as an explanation for the inconsistencies between Ne'eman's essay and their advocacy efforts on behalf of the young special education student from Arkansas. However, I am not sure what ulterior motive ASAN would have for their actions, but perhaps there is one.

Retired neurodiversity blogger "The autistic bitch from hell" has suggested that the reason certain autistic persons crusade against the neurodiversity movement and efforts of autistic self-advocates is because they are on welfare or social security and refuse to take responsibility for their lives and are worried that these efforts will jeopardize their welfare benefits.

I find this assertion interesting as a crusader against neurodiversity and a critic of the autistic self advocacy network, who for more than 27 years tried his ass off to make a living, applied for hundreds of jobs, worked sporadically with some success, endured multiple firings and all the headaches of having to avoid going on the dole or being completely supported by my parents just to avoid the fate that ABFH claimed that I covet so much. Yet, two of the highest (at the time) profile spokespersons for the autistic civil rights and neurodiversity movement, Frank Klein and Amanda Baggs were both on welfare and/or social security and as far as I know never worked a day in their lives. It is also interesting in light of the fact that Ari Ne'eman stated that he supported money being spent from the Obama administration's economic stimulus package to expedite processing of social security disability claims and hearings at the administrative law level and in federal district courts and circuit courts of appeal. The fact that ASAN has lobbied for Medicaide waivers for persons with autism in various states as well.

All of these facts has just gotten me to thinking. Should the equality demands responsibility ploy just be restricted to criminal behavior as well as those of us unemployed autistics whom ABFH asserts are just lazy loafers who won't work and take responsibility for our lives? What about in special education? What about the state regional center services in California? What about behavior in school and in the workplace?

The IDEA law, which ASAN has lobbied for funding for costs the taxpayers tens of billions of dollars. If equality demands responsibility and autism is to be considered a legitimate way of being rather than a disease shouldn't ASAN be lobbying to abolish it and claiming that autistics should be educated in the same manner as their NT peers for the same amount of money and no extra money be spent on special education for these children, after all, equality demands responsibility?

The state of California where I live is billions of dollars in the hole. Jerry Brown, our new governor has created a hornet's nest by proposing drastic cuts in the state budget. According to the equality demands responsibility mantra the families of children with developmental disabilities should not be lobbying for state services at taxpayer expense. They should be lobbying for Brown and the state legislature to close down the state regional centers and responsible parents of autistic children should no longer avail themselves of these services if they are to assert their children are equal to NT children and don't need a cure.

What about inappropriate behavior and social skills among persons with autism. Shouldn't we expect them to always behave in an appropriate manner in spite of their autism? After all, equality demands responsibility. This is in spite of the fact that Ari Ne'eman stated social pleasantry should be eliminated as a criteria for hiring people for jobs and evaluating their work performance.

According to the equality demands responsibility mantra, autistics should not be allowed diminished capacity defenses in criminal proceedings under any circumstance,they should not be allowed social security benefits and should work for a living. They should take responsibility for their own behavior and should not be allowed services by government if we are to state that no cure should be sought for autism and to do so is morally reprehensible.

I don't see ASAN and other advocacy organizations lobbying for any of these things. All I see is one inconsistency and digression from the Equality Demands Responsibility tenet after another. Or perhaps the midnight in Chicago blog is indeed correct. That the autistic advocacy organizations have an ulterior motive for all of their activities and perhaps don't really give a flying fuck about autistics' rights. I wonder what this ulterior motive could be.

Thursday, January 20, 2011

more work at cal tech

About an hour ago, I came back home from The Emotions lab at Cal tech, run by neuroscientist Ralph Adolphs. I participated in some more experiments involving some questinonaires, this sort of experiment involving the Stroop effect where I have to name what a color is when a color word is put in a different color than the word. For example Greenaand having to chose the color red instead of the color green. They also had this eye tracking experiment where I had to wear a camera on my head that tracks eye movements, while I look at some faces and photos of scenery and decide which of two choices is the most attractive. I am not sure what the purpose of these experiments are and what they are trying to measure in autistic persons, but I am able to make $80 for an afternoon's work which is nice considering my financial situation is not as lucrative as it was four years ago or so. Of course some of the money is taken in the costs of gas in driving to Pasadena which is probably about 30 miles or more from where I live. I got to see post doctoral fellow Dan Kennedy again, and say hello to him. I first started participating about a year ago and I have written about my experiences doing this. The eye tracker was kind of a hassle because I had to wear this camera on top of my head while doing it, and it took them a long time to set up the calibrations for it, but they finally did it. Apparently this device is very "finnicky" as they put it and it takes a long time to set it up.

It was nice to be able to have something constructive to do for the good part of the day and some interaction with some persons as well as making some money. There is sort of an irony involved in all of these people rejecting me because of my autism, but there someone actually wants me because of my autism and wants to pay me some money for it. It is as close as I can get to having a job right now, though not quite the same I guess. Course I am enjoying retirement somewhat also.

Also, the Courchesne lab contacted me recently and wanted me to participate in this study they are now doing. I used to be a research subject with them but have not done so for a while now. I could have made a couple hundred dollars doing that but it involved driving down to San Diego (more than 120 miles each way) on at least two or more different occasions and having some testing and MRI scanning done as well as having a skin biopsy taken from my buttocks. I guess I was squeamish about the skin biopsy and at the time I was having some dermatologic problems with ringworm on my buttocks which has resolved. It is interesting in apparently the idea is that they can do some sort of stem cell thing where they turn skin cells into neurons and the autistic neurons may develop differently than normal controls. I can't help feeling a little guilty that my participating might have made the difference between curing (or at least making a major therapeutic breakthrough in autism) autism in a much shorter time. So at some point I may reconsider my participation in that study if it is not too late, but we shall see.

Another issue that concerns me is that they are only interested in high functioning autistics in a lot of these studies, at least at Cal Tech, as it involves compliance with the eye tracking device and being able to use a computer properly and reading the choices on the computer. I wish there was some way to do research on the lower functioning people so they could have a shot of a decent life and being able to talk and such, but so it goes.

I think Adolph's lab is still looking for research subjects 18 years of age and up with high functioning autism or Asperger's syndrome. They pay $20 an hour for various experiments and $50 an hour for undergoing an MRI scan. So if anyone is interested I guess they can contact the lab. I believe the number of the lab is included in the post that I linked to from last year. If it isn't I guess someone can post a comment to me or send me email and I can give them the number.

Wednesday, January 5, 2011

Is autism speaks suggesting affirmative action to help employ autistics?

I have read an interesting post by a young man named Kerry Magro, who is described as a college senior who is a "staffer"with autism speaks. One wonders what the term staffer means as Magro's post deals with the problems of finding employment for autistic people and suggesting affirmative action as a means for achieving that goal and he states that he is interviewing for job placement now as a college senior. So, it seems likely he is not a paid employee of autism speaks. Since they published his post on their blog, I also wonder if autism speaks is suggesting affirmative action as a remedy for helping autistic persons find jobs.

This is interesting in light of the fact that autism speaks put on a dog and pony show suggesting how great it is that there are certain employers who hire persons with autism. I have written about this in a previous post. A notable fact is that autism speaks has suggested that employing autistic persons is a good idea, yet, as far as I know, they have never had a single paid autistic employee in their organization-not even as a minimum wage position with a job coach. I have to wonder, why autism speaks would be publishing Mr. Magro's post on such a subject in light of these circumstances. I also wonder why Mr. Magro would be writing about the virtues of affirmative action, yet not asking autism speaks to employ himself or some other deserving person with autism.

I wonder if Mr. Magro is a believer in the concept of neurodiversity. This might help him get a job with autism speaks or perhaps encourage autism speaks to engage in some affirmative action and hire persons with autism in paid positions in their organization.

Perhaps this sockpuppet of the ND movement should change their name from Autism Speaks to Autism Listens as this is what they seem to do 120% of the time that the ND behemoth speaks.

When they found the "I am autism" video offensive, it was removed from the home page of their site.

When neurodiversity wanted them to cough up cash to help them finance research that was aligned with their philosophy. Laurent Mottron, Isabelle Souleries and Michelle Dawson were given a half million dollar grant.

When many adherents to the ND movement complained that there were no autistics on the board of directors or were placed in positions of power within the organization, they responded by appointing, John Robison to their science board. (Robison received an AS diagnosis at age 40). Robison, a high school dropout with no training or expertise in science or autism sits in a room with M.D. and Ph.D. scientists and decides what research AS will fund. It would seem the idea is that Robison can better represent the community of autistic persons in that he has experienced first hand what life is like for a person on the spectrum. I wonder how many persons with autism have been able to marry twice, father a son, get a $100,000 a year engineering job with no degree or formal training and write a best selling memoir. I know that I am not one of them. What have Robison's contributions to the field of autism research been so far? To date, he has seriously suggested studying geek success as a legitimate scientific endeavor. He has lobbied and received funds for his own personal use when his son and his son's friend Alex Plank needed money to make films for their autism talk TV series, partially reimbursing Robison, the cash he laid out.

Interestingly enough, the ND movement has offered solutions of their own to the problems of autistic persons in the workplace. Ari Ne'eman a 21-year-old (at the time) who has never had paid employment of any kind has suggested eliminating social pleasantry as a criteria for hiring and receiving a good job evaluation. Joseph of the natural variation blog has stated that in the near future, there would be a 70% rate of employment among persons with autism. He projected that based on a supposed 30% rate of employment that currently exists but neglected to cite any reference for this figure or where it came from (assuming it came from someplace other than Joseph's imagination). When I asked him, he was unable to produce a source for this figure. Joseph then went even further claiming that unemployment was not a problem for autistic persons at all and they made in a living in the same manner as persons who were not handicapped. He based this on a survey involving only 19 people with questionable methodology.

I can be reasonably certain that Mr. Magro is a 22-year-old with virtually no experience and probably limited qualifications for anything seeking employment in the worst economic times since the great depression. This is certainly an arduous undertaking for someone without a disability let alone someone who has autism. There are no easy solutions or quick fixes for an autistic person to make a living, other than trying very hard to amass qualifications, spending a lot of time applying for jobs. It takes a great deal of work. I know as I am an individual who spent more years than he or Ari Ne'eman have been alive doing just that. I am proud that at least at one time I was able to work sporadically in spite of this horrific handicap. I never looked for work in economic times like these though.

If autism speaks does not want to practice what they preach and won't help Mr. Magro, I wish him the best of luck in finding employment. Of course one solution for him, other than suggested in the previous paragraph might be for him to consult the ND movement and ask them to have a little chat with autism speaks. Given AS's track with ND they'll probably listen.

Monday, January 3, 2011

Finished a first draft of novel in progress

I have had an interesting start to the new year in that I finished a first draft of that novel that I have worked on off and on for about 3 years now. In fact I first wrote about my starting it on Jonathan's journal in my stories webpage where I briefly blogged just before starting autism's gadfly.

I realize that though a milestone of sorts, a first draft of a novel (at least in my case) does not mean a whole lot in terms of marketability, or publishability. The nice thing about this blog is that I can write posts on the fly without being accountable to an editor for what they are worth (or not worth depending on your viewpoint) and then have some interested people read them. One is not afforded the same luxury with a novel or non-fiction book, or an article you want published someplace and you are accountable to some other entity. Usually, unless the writer is extremely skilled (far more skilled than I am) they have to do extensive editing and re-writing to obtain a finished product ready for submission. I am not sure I am capable of doing that with a book, though technically I have written three books now (four if you count a book length collection of short stories as a book).

Though I realize I have sometimes been lax in my re-writing of posts on this blog, I am gratified that I have now been writing semi-regular posts on autism's gadfly for just about three years and I have developed a following, albeit a small one, of devoted readers. Not only that this blog seems to generate a large amount of comments for a small tiny spec in the blogosphere.

I wrote briefly about my novel in progress last year in another gadfly post.

It would seem now, the real work of rewriting will begin. I think it is too late to enroll in a ucla extension course, for next week, so i may have to wait until April. I don't have as much money as I did at one time to hire a book doctor and for The School of Hard Knocks I was not too inclined to listen to them anyhow and they did not give me a good direction. I suppose that unfortunately I am one of those writers who wants the book doctor to tell me that I am another Dostoyevsky and my novel needs no work, so not sure what the next step will be.

I still dream of using my autism as a gimmick for commercial success. For those who are interested, I wrote about that idea in the post that I linked to last year and they can read it. I learned some hard lessons from that. Of course now, high functioning autistics with intact intelligence are no longer considered such an anomaly. This might reduce the value of using disability as a gimmick in marketability of a book. In fact, we have John Elder Robison representing all autistics on the AS science board. Stephen Shore and Ari Ne'eman are supposed to represent our interests on the IACC. These three individuals have a functioning level that far surpasses mine.

Of course one of the lessons learned was that a seemingly sure fire gimmick for publication is no substitute for the arduous effort it will take to write a product ready for publication.