Thursday, July 30, 2009
Gadfly gives his input to IACC
The form was very bureaucratic and difficult as is typical for the government in general and the IACC in particular. So I will just go into the gist of what my suggestions were. I realize that this was probably about as effective as writing a letter to Santa Claus but I did it anyhow. Also, the IACC and the combating autism act have been a pretty big joke since their inception and I am not terribly optimistic about this act being able to produce research or other things that will help persons with autism.
I stated that I was concerned about how the IACC allows certain members of the neurodiversity movement, namely Ari Ne'eman and Katie Miller to testify before its committee. They are naturally testifying against a cure for autism and research that could result in prevention of someone becoming autistic. This defeats the entire purpose of the combating autism act. I suggested that they and others like them not be allowed to testify or give their thoughts. Members of the neurodiversity movement protested this law and then hypocritically embraced it after it passed and found they had a soapbox on which to present their platform to the government. I wrote about this previously
I also wrote that I believed that at least one person on the spectrum who is in favor of a cure and prevention of autism be appointed as a public member of the IACC. The combating autism act stated that at least one public member would have to be on the spectrum. Currently that person is Stephen Shore, an autistic who opposes curing and preventing autism. I said that I did not believe that Stephen should be a public member of the IACC because he disagrees with the principles of the combating autism act.
I wrote about my concern that both Shore and John Robison are allowed to review grants for research that is publically funded. Both of these individuals have expressed opposition to a cure for at least some ASD's. Also, I don't believe either of them has the necessary qualifications to review this research. I believe that people should be chosen on their merit rather than on their ability to get a lot of autism conference speaking engagements or their ability to write a commercially successful memoir.
I wrote about discontinuing research on vaccines as I believe there is no proof that vaccines cause autism and so far there is evidence that they don't. Also if you read the 2003 california report the tripling of prevalence between 1970 and 1990 does not correspond with an increase in the vaccination schedule. So there is not even a correlation let alone proof of causation. I have written more about this elsewhere
I also urged them that if Morton Ann Gernsbacher is receiving federal funding for her research that this funding be discontinued immediately. This is someone who has written that autism is not harmful
I also voiced concern about the lack of published adult outcomes in Lovaas' 1987 research. This is in spite of the NIMH funding that Lovaas received to publish these adult outcomes. I suggested that funding for ABA be discontinued until these outcomes have been published in a peer reviewed journal.
I also wrote about what could be done in addition to not what should be done. I suggested using Rhesus monkeys as an animal model of autism in light of the research done by Harry Harlow in which he isolated the rhesus monkeys and they showed traits similar to autism, such as rocking and self-mutilatory behaviors. I suggested that elderly persons with autism be found and be persuaded to will their brains to science. Also, suggested that research on norepinephrine as a causative basis of autism be funded, as the dorsal tegmental bundle which is the main norepinephrine tract in the brain travels through parts of the brain that have been implicated in autism such as the cerebellum and hippocampus.
I also suggested job training program for adolescents and young adults on the spectrum.
Of course, I won't hold my breath for too long waiting for the IACC to enact any of my suggestions.
Wednesday, July 29, 2009
Saw the movie Adam
The character in the movie also had a pretty good job compared to most on the spectrum-electronics engineer. However, he is let go from this job and then his girlfriend gives him a book on getting employment for asperger's, which I think was another actual book that Jessica Kingsley published and not some fictional book for the movie. The being fired certainly hits home with me and I suspect some other persons on the spectrum as well. The character had disclosed his disability to the employer, so, at least in the movie, disclosure did not work. I don't believe it works too well in real life either.
I wonder if there will be other autism and asperger's movies. There probably will be someday but it seems that in proportion to the popularity of autism (as well as Asperger's) that has become pervasive there is a surprising dearth of them.
I am not sure I should say anything else about the movie as it would ruin it for anyone who might want to see it. I still wish that autism with a speech delay (which is what I had as a toddler) and Asperger's were treated as separate disorders in the DSM and in other places. Then Ari Ne'eman and the rest of the NDs who may have AS but never had a speech delay won't try to speak for me.
Well, not a complete waste of money and good part of an afternoon, but I guess you can go see the movie and judge for yourself.
Saturday, July 25, 2009
Neurodiversity: Teach Your Children Well
Persons familiar with the sad saga and hardball tactics of club ND know the story of Kelly Beckham a 14-year-old girl who made a website called NT speaks in which she borrowed from the graphics of Autism Speaks webpage. AS threatened her with a lawsuit and because she did not want her parents to find out what she had done she deleted the website. AS dropped the threats of the lawsuit when they found out how young the girl was. This kid became a cause celebre' of the neurodiversity movement who used this as an excuse to call AS an oppressive bully.
Ari Ne'eman is now at the age 21, probably the most visible and prominent spokesperson for neurodiversity. We see that Ne'eman was preaching the neurodiversity party line going back to when he was in high school.
Last, but certainly far from least we see a rather interesting video of a cute 7-year-old autistic boy named Darby who discusses how much he detests a cure for autism.
We see the young lad, interviewed by someone (presumably his father), giving him what seems like some deliberate teleprompted queues that are designed as rather demagogic propaganda to help promote the neurodiversity movement.
I wonder if anyone sees a pattern here. I am reminded of an old song that was popular in my youth in the early 1970s by the group Crosby, Stills and Nash "Teach Your Children Well" For those who don't remember this song, here is the video:
Perhaps this could be neurodiversity's theme song. This is one of the hardball techniques that are used by the cyberbullies and hatemongers in the ND movement to generate their hateful propaganda and lies. Those who read my piece on my stories website urging persons to reject neurodiversity remember that I stated that neurodiversites behave like Christian missionaries trying to convert people to club ND who will use it as a tempting escape valve. Neurodiversity seems to have an idea who the best pickings are. Very small children, the younger the better. Have the adolescent girls, sadder but wiser girl and Kelly Beckham really have enough life experience to know better? They have never been out in the world or tried to hold down a job with their disability. They don't have the same experience to know these things that I have in my 50s. They are young and impressionable. Even the now adult (albeit young adult) Ari Ne'eman has never worked a job a day in his life. Yet he seems to feel that he is qualified to use his influence to lobby the government with public policy suggestions to help autistics work or get voc rehab without curing them. What would a 7 year old child know about any of these things. Where could he possibly have gotten ideas like these? What life experience has he had? He has not yet reached adolescence where celibacy, often the bane of autistic males, would play a role. There can be no question at all that ND went for these people because they are most vulnerable. Perhaps having a cute 7 year old child on a video talking about how bad a cure for autism would be would seem somehow charming. In the warped minds of persons who believe in neurodiversity, this could be used as a propaganda tool to help convert those and get more internet war mongers on their side.
It is not just children that are seen as vulnerable, but also adults that seem to have a lesser intelligence also. I have a friend with an ASD who has difficulties with expressive and receptive language. Some ND's befriended him hoping to convert him to their belief. They did for a while and he went around saying that he did not want to be cured. Then, finally, when he saw how bad his disability was, he was thankfully intelligent enough to see what a scam ND is. He decided he wanted a cure. These people no longer wanted to be his friends when they found they had no further use for him. This person is intelligent. To someone who does not know him well, the way he talks and has difficulty understanding things that are spoken to him would make him seem less intelligent than he really is. This is likely why ND tried to proselytize him.
These are the methods that ND bullies use. These people are very poor role models for children. They behave badly, they are rude, and in the case of one individual I can think of, they use gross profanity. As I have mentioned in some previous posts, "the autism bitch from hell" wants those of us with autism who wish to be cured strangled to death and turned into cat food. I wonder if the parents of these children feel these are people who are a good influence. I believe not.
I suppose, some of the members of the neurodiversity movement are old enough to remember the old Crosby Stills and Nash song. Therefore they believe they can win their puny little internet wars by teaching their children well.
Thursday, July 23, 2009
Jaime Pineda's neurofeedback study
Mu rhythms are a brain wave that is an electrical signal indicative of activity of certain areas of the brain. These areas are located in the frontal lobe and some parts of the parietal lobe. Of interest these brain rhythms are thought to be associated with mirror neuron function. Mirror neurons are a really hot topic in autism brain research right now. One area in which mirror neurons have been found in monkeys is equivalent to Broca's area in humans, which is the area of the brain responsible for expressive speech. It is quite possible that a dysfunction in the mirror neurons in this area could be responsible for the speech delays associated with autism. I have written about this previously
Mirror neurons are a group of neurons that fire, not only when movements are being made but when movements are being observed. In experiments done with monkeys, these brain cells fired both when movement was being done and when movement was being observed by an experimenter, e.g. both when the monkey grasped a peanut and when the monkey observed the experimenter grasping a peanut. In experiments done with autistic children blood would flow to areas of the brain associated with mirror neurons when they were doing movements but not when they were observing movements made. This was not the case in normal controls whose blood flowed to the brain areas both while executing movements and watching movements. Lindsay Oberman (Who at one time was a graduate student in Pineda's lab) did an experiment showing that mu rhythms were suppressed in typical children both when they made hand motions and when they observed the hand motions of others. Autistic children's mu waves were suppressed when making motions but not when watching others' motions.
If it were possible to train an autistic child through feedback, e.g. a tone or a picture that presented itself in a certain way, to suppress the mu rhythms, this could affect the functioning of mirror neurons and thus improve behavior and enable the child to function better. This paper deals with this question.
In this paper, there were actually two different studies done. There were autistic children that were put in both experimental groups and a placebo control group. The experimental subjects were able to learn how to suppress their mu rhythms and the placebo group received a sham training protocol. Prior to this there had been studies of neurofeedback done on autistics but in one the controls were not considered adequate as they lacked a placebo treatment and were aware of test conditions. Other studies have just shown improvement with single subjects and had no controls. This study may be the first randomized group study using experimental groups and control groups to assess the efficacy of neurofeedback in autism. The autistic experimental subjects were able to learn how to suppress their mu rhythms. This was associated with improvement on an autism treatment scale as opposed to the control group as well as greater attention. The ATEC test( autism treatment scale) measured speech language, sociability, sensory cognitive awareness. The experimental group did far better than the placebo group who did not learn how to control their mu rhythms. Imitation behavior was also tested. Slight improvements were seen in both the experimental and control groups but there was no significant difference between the two. So apparently the mu wave suppression training does not affect imitative behaviors which are sometimes a problem with those who have autism.
I believe that this may actually be a promising treatment for at least some autistic people, though probably a lot more experimental work has to be done. One of the problems, as is the case with many autism studies, is that the subjects were for the most part high functioning with overall IQs above 80. In the first study, they were all male subjects. However, in the second study there were 19 subjects, 16 males and 3 females which is fairly close (albeit on the high side)to what the ratio of persons with ASD's is in the general population of autistic persons. In fact, it may actually be lower than the ratio of fairly high functioning autistics, which has been reported to be as high as 10 to 1. Another problem with this study was that there is no way of knowing whether the improvements were due to learning how to suppress the mu rhythms or whether or not some compensatory mechanism was developed. In Mirella Depratto's fMRI mirror neuron study involving autistics, she found that autistic subjects were able to equally imitate facial expressions as well as the typical controls. However, when testing for blood flow to the inferior frontal gyrus the controls would have a high flow of blood oxygen to the inferior frontal gyrus while imitating the facial expressions but the autistics did not have blood flow to these areas. This suggested not only dysfunctions in the inferior frontal gyrus area but that at least some autistics can develop compensatory brain mechanisms in order to imitate facial expressions. Of course, from what I have read, there are some autistics, who have an impaired ability to imitate. The hypothesis for this, of course is that mirror neuron function is impaired. It is not known how long these effects last and Dr. Pineda is continuing research into this line.
I am also interested in TMS as a promising treatment but have not yet done enough research in it to write about it. It is very possible that these could be promising avenues of treatment in at least some persons with ASD's At some point maybe I will write a post about TMS stay tuned!
Tuesday, July 21, 2009
john elder robison gives his take on gadfly's views
He discusses why I would not regard my autism as any sort of gift and would long for a cure as opposed to his view that though having an ASD has caused him some problems in his life, he does not wish for a cure but to be accepted as he is. He also feels his AS has given him some great gifts. He states that he has been a subject in research studies showing that he has similar neurologic abnormalities to people with much more severe autism, but admits he does not have the problems they have and concedes that is one reason why two people on the spectrum could have such differing viewpoints. In light of these facts, he states that he finds my desire for a cure reasonable, but hopes that I can agree that his desire to live as he is and seek acceptance rather than a cure is reasonable.
Yes, I can agree John's take is reasonable for him. I have no desire to force a cure on him if he does not desire one. I see nothing wrong with him seeking acceptance. The problem is this contradicts what he said in his book, where in fact he goes much further than this. On page 5 of his book he states:
Asperger's is not a disease there is no cure and there is no need for one
I also wonder since he does not seem to regard his AS as any sort of pathology why would he be a subject in a transmagnetic cranial stimulation experiment. After all, it seems that part of his motivation in being a research subject was there were some facets of his AS that he found disabling and he wanted to participate in the research that Dr. Lindsay Oberman and others are doing along these lines to help correct these deficits.
Though I don't have Asperger's per se, I have a high functioning autism condition that is similar to it. Though, unlike person's with Asperger's I had a speech delay, I am physically clumsy and have a poor score on the performance part of the WAIS IQ test and a relatively high verbal score. So basically, he in the book is pushing his view on others that not only does he not need a cure but no one else with Asperger's or a disorder like it does either. So basically John is saying I should not tell him how to live his life, but others who have Asperger's who may be so gravely disabled by the condition (unlike John) that they can't work or find a mate are not diseased and should not be cured if there were an opportunity for a cure.
However, John goes on to admit that not all persons with autism spectrum disorders (myself included naturally) will do as well as he does and others. He states that he wishes this issue were not as divisive and polarizing as it is and hopes that people can all get along. I do give him credit and applaud him for saying this. I do agree with this.
I do feel that John did a rather superficial perspective on why perhaps I (or someone else whose autism has impacted their lives more than John's has) might have a different view than he does. He is married and has a kid. I have never been married and will likely never be married. He was able to make a good living in various businesses. I have only been able to barely eek out a living sporadically during an approximately 28 year period of my life and had to retire relatively young. John and I are about the same age 51 and 53 respectively. Yet he apparently did not decide that he had Asperger's until he was about 40, where apparently he had a friend who was a psychologist discussed it with him. Though I was not diagnosed with autism until my teens, my mother did ask the person who was my therapist in the 1960s if she thought I was autistic and she said no; so even in those days the possibility was explored. Of course, in 1958, when my parents first noticed something was very wrong with me, I was taken to a pediatric neurologist, who did not know what I had as very few persons had heard of autism in those days. I wonder if John's parents took him to be evaluated for something when he was 3 years old or even 8.
I also was a veteran of special education schools for 8 years. I am rather vague on exactly what John's experiences were in special ed. I first got John's attention when I wrote a post stating my distaste for the fact that he and fellow anti-cure autist Stephen Shore were allowed to review research grants for autism funded with public taxpayer money when the official policy of the U.S.A. based on the Combating Autism Act was that research would be funded for the specific intent of curing and preventing autism. I questioned what qualifications he and Steve had for reviewing the research. I received some polite responses from him, both in the comments section of my blog and in one pleasant private email exchange he and I had.
He stated that he had also had some experiences in some special ed after school programs in his youth. I will admit that I have not read John's book in its entirety, only parts of it. I sort of feel that I have no use for books where the person who is married and has kids and has a good job and then decides he is autistic well into adulthood. Another example of this is Michael John Carley who not only rejects a cure for himself but states that most autistics don't want a cure in his book Asperger's from the Inside Out. They have not likely shared my life's experiences, so they can't possibly know how rough I have had it due to my disability. So, I don't know what if anything John said in his book about his after school special ed experiences. One reader of gadfly emailed me privately that he had read John's book and he could not recall John ever mentioning anything about his special ed experiences in Look Me in The Eye and felt he would have mentioned this in the book if he in fact had any special ed experiences. I agreed with this. Of course, not having read the entire book, I don't think I can fairly comment on this any further.
Also, it is unclear whether or not John was ever officially diagnosed with AS by a clinician before his book was published. My memory of the parts I did read was that he was diagnosed by the psychologist friend of his when he was about 40. However on his website he quotes what some reviewers say about his book. One interesting quote comes up from a library journal review of his book:
First-time writer Robison diagnosed himself with Asperger's syndrome after receiving Tony Attwood’s groundbreaking work on the subject from a therapist friend ten years ago.....
So it is unclear to this blog writer whether or not Robison has a legitimate diagnosis of AS from a clinician. I certainly have been diagnosed as autistic by at least a few different clinicians. It is the basis for my being on my parent's medical plan as a disabled dependent and the basis for my persual of eligibility for social security disability insurance, which my lawyer is currently handling on a contingency basis.
So, in sum my life experiences have been far different, I believe than that of persons like John and Michael Carley. This condition has indeed made my life difficult and this does form my opinion for a need for cure. Again, I will say, I am not trying to impose my view on adults like John who are of the age of consent.
I am glad that John has called for civilized discourse in the cure debate. I am also very glad that he has been very polite to me in all of our exchanges over the internet so far and that what I had to write influenced a best selling author enough to make me a subject of one of his blog posts on his psychology today blog.
I believe that though John is not a party that it is the neurodiversity, anti-cure people with their sharp rhetoric, constant abuse over the internet of autistics who don't share their viewpoint who have created the polarization of this issue or at least most of it. I hope that at least some of them will read John's post and take what he has to say to heart.
Wednesday, July 15, 2009
The Continued Saga of neurodiverse economist Tyler Cowen
I was curious as to whether or not he would elaborate on the alleged autism of Economics nobel prize winner Vernon Smith, who as far as I could tell was only self-diagnosed by a Simon Baron Cohen AQ test which he took. Cowen concedes this in the book and so apparently Smith was never diagnosed as having AS by a clinician, though he is often given as an example of an autism success story by ND proponents. I also wondered about mathematician Richard Borcherds who is the other paragon of virtue extolled by club ND to prove autism can be a great gift. Apparently Borcherds, according to the book The Essential Difference, sought an ASD diagnosis from Simon Baron Cohen who would not give him one. Though Cowen mentions him in the shorter essay he is not at all mentioned in the book.
Cowen advocates schools teaching non-autistics, the "cognitive skills of autistics". One positive thing he cites are studies by researchers such as Deborah Fein who state that a substantial percentage of autistics may "recover spontaneously" or lose their diagnosis. This is an argument I have made against the costly and questionable autism treatments.
Michelle Dawson on one hand is described as a leading figure in autism research. He reports that growing up she had great difficulties learning how to speak meaningfully and cites her as an example of autistic cognitive strengths. Yet he states: Note that by most standards she would count as "very autistic" rather than as "mildly autistic" I can’t help wondering what Harold Doherty would think about this statement. If Dawson is very autistic, then who is mildly autistic? Where on the spectrum would Cowen put Conor Doherty or Sam Best or other nonverbal autistics?
He describes Amanda Baggs as not being able to talk yet writing more sharply than a ph.d., I can’t believe that Cowen does not know about the controversy surrounding Baggs diagnosis of autism yet he does not mention it in his book.
He makes out autistic persons he has encountered to be polite and the stereotypes of them being callous not true. I mean what planet is this guy on? Anyone who has seen the neurodiversity crowd on the internet that he writes about can see how cruel and nasty they are and what a bunch of vicious hatemongers exist within this group. He must know this, but conveniently omits this from his book.
One stereotype that I am glad that he debunks is autistics having no sense of humor. I believe I have a very good sense of humor and I enjoy jokes and comedy and such.
He writes about Sue Rubin (a person I am rather familiar with having met her and her parents), describing her as a highly intelligent autistic. He does not mention the fact that Sue is unable to speak and only communicates by using a keyboard, that at age 31 she is still going to Whittier college and is unable to work in any capacity. He trivializes her very severe autism by comparing it to the ordered thinking of Buddhists, stating that when Buddhists think the way Sue does, they are somehow enlightened but in Sue’s case, her similar modes of thinking and ordering things are pathological. I was flabbergasted to read that he was baffled as to why Sue Rubin was not given the same respect and put on the same pedestal as the Dalai Lama!!
He also states that autistic cognitive strengths can be utilized to help with unemployment and that there will be a demand for autistic employees based on these strengths in jobs such as niche jobs, math jobs and jobs requiring the stereotyped ability of attention to detail that autists have. If that is the case one must wonder about the reported 80% or so unemployment rate among autistics and others with similar disabilities.
Cowen also states the tired cliche that because autism is highly heritable and autistic traits have not died out they must have some sort of evolutionary advantage. While he may have considerable expertise in economics, the man shows his woeful ignorance of even the most rudimentary principals of genetics. The reason autism and autistic traits have stayed in the population is due to de novo mutations, not due to evolutionary advantage. (This ignorance is something he shares with fellow non-geneticists Temple Grandin and Simon Baron Cohen).
He also claims autistics will help with better political thinking, as certain studies by psychologist Rita Jordan have shown that autistics are less prone to stereotyping and rules of law. Well, my experiences are sure different than those described by Cowen in terms of the abuse and nasty discourse that I have constantly seen among anti-cure neurodiversity proponents over the several years that I have endured their barrage of insults on the internet. I do not believe autistics are more objective than nonautistics in spite of Cowen’s assertion. I do not agree with him that autistics are not prone to stereotyping. Based on my experiences with ND autistics, just the opposite would seem true.
Dr. Cowen: If you happen to read this post, I want to tell you that you are basing your observations about autism on stereotypes. On research using heavily skewed subject samples of autistics that are not representative of the population of autistics. The ND’s have disproportionate amounts of females and are a heavily skewed subset of autistics. You trivialize my very serious disability and my forced retirement in my early 50s and my inability to make a living in spite of your unfounded contentions that there are detail oriented jobs and math oriented jobs that autistics will just excel in. Your observations about autism are only that of an ivory tower/armchair expert. You want to trivialize the problems that at least some of us have by claiming to share a thought process similar to ours. You don’t know how lucky you are. Had you been autistic at a severity level that I have, you would not have been able to marry, have your children, become a college professor and publish all of your books. If you think that Michelle Dawson is an example of a "very autistic" person, then I must be an unfathomable basket case in your esteemed observation. I wonder who you would consider as having a mild case of autism. Something for you to think about.
Tuesday, July 14, 2009
A neurodiverse economist
Cowen starts off in his essay by comparing negative attitudes towards autistics to racist discourse that at one time was present in universities. I find this quite ironic in light of the frequently hateful rhetoric that most ND proponents seem to espouse such as the insults of my mother by Clay Adams and Phil Gluyas, the condescending cheap shots about my special education experiences from the late but not great "Alyric", also a rather nasty post by the well known neurodiversity blogger "Autism bitch from hell" who suggests that all persons on the autistic spectrum who don't happen to agree with her enlightened view of autism should be strangled to death and turned into cat food. Not to mention David Andrew's profane diatribes against any person on the spectrum he happens to disagree with. The comparisons to Nazis and eugenicists that are often made by various ND proponents, etc. He goes to talk about an essay which details the costs of autism to society stating how offensive he and some persons on the autism spectrum find this.
Cowen goes on to write:
A lot of people at colleges are aware of dealing with autism (and Asperger's syndrome; I will refer generally to the autism spectrum) in their "special needs" programs. The more complex reality is that there is a lot more autism in higher education than most of us realize. It's not just "special needs" students but also our valedictorians, our faculty members, and yes — sometimes — our administrators.
As a former alumnae of "special needs" program and someone who was not my class valedictorian, never was a university faculty member or college administrator, I must wonder about the basis of such a bold statement.
He gives Temple Grandin, his colleague Vernon Smith and Richard Borcherds, an award winning mathematician, as examples of these. He goes on to acknowledge that he does not believe there has been an epidemic of autism but that there has always been a high stable rate of autism, another belief perpetuated by club ND. He states that there are probably more than a million autistic adults out there. Assuming that there are more than a million autistic adults, then 3 out a million seems to be the exception rather than the rule as Cowen implies.
Grandin may in fact be an exception to that rule. She has presented with autistic symptoms at age 3, unable to speak and went from feces smearing severely autistic to Ph.D. in animal science and professor at U of Colorado. Kudos to her.
Vernon Smith claimed in an interview in 2005 (at the age of 78) that he had Asperger's syndrome or at least symptoms of it. He expressed inability with social situations (in spite of the fact he was able to marry and produce children) and the ability to zone in and out. Yet, claimed that his AS was a virtue because it helped him to concentrate and produce great economic works. On reading his memoir which is available in Google books, it is unclear if he was in fact ever diagnosed with AS by a clinician. If he was, there is no mention of it in his autobiography. It would seem strange that if he were in fact diagnosed he would not have mentioned it in his interview and in his book. Apparently in the 1990s at the age of 68, Smith feeling he might have ADD underwent some psychologic testing, the circumstances are rather vague. Smith then takes Baron-Cohen's autism quotient test and based on those scores surmises he might have symptoms of Asperger's. As far as I can tell there is no other basis for Smith's having an ASD.
Richard Borcherds, however, presents a somewhat different story. At a somewhat younger age than Smith (38) he decided that based on problems with social situations, lack of friends and an inability to talk normally on the telephone that there was a possibility he had Asperger's syndrome. Based on consults with Simon Baron-Cohen and his colleague Sally Wheelwright and some testing, there is some speculation as to whether or not Borcherds does in fact have Asperger's. Histories were also obtained from his parents. Baron-Cohen writes about this in his book, The Essential Difference. I am also not sure whether or not either Baron-Cohen or Wheelwright are in fact clinical psychologists qualified to make a legitimate diagnosis. I think it is quite possible they are merely cognitive psychologists who do research and neither has any formal training as a clinician. I will stand corrected if anyone who may happen to read this gives evidence to the contrary. Though there is a more detailed assessment of Borcherds than there apparently was of Smith, it is still unclear whether in fact Borcherds is on the autism spectrum. Baron-Cohen writes:
One might question whether Richard Borcherds really merits a diagnosis at all, given how well adapted he is. Certainly he is not currently severe enough in his symptoms to warrant a diagnosis in adulthood, as his symptoms are not interfering with his daily functioning. In the jargon of the diagnostic criteria, he is not "suffering any impairment in his daily life"........
So, at least two of the three examples of ASD academics are rather suspect to say the least.
He then goes on to rehash the Michelle Dawson/Laurent Mottron arguments of the autistics who according to studies have superior pitch, are not as easily fooled by optical illusions as NT's, better at solving certain puzzles and are better at recognizing certain patterns, etc. Of course Cowen fails to acknolwedge, as do both Dawson and Mottron, the limitations of these studies in that the research subjects in these studies are often a much higher ratio of male to female autistics than given in the general population of autistics, have relatively normal IQ scores and are quite high functioning as compared to many other autistics. Due to the fact that autistics may move around and artifacts caused by their inability to sit still in an MRI scan or while having an EEG reading may limit the research to certain subjects, these limitations should always be acknowledged; unfortunately they are not. Also, what real life applications an ability to interpret patterns, musical pitch, and an inability to be fooled by optical illusions has is beyond my comprehension and sophistication to understand. Perhaps Dr. Cowen could explain how these autistics might not be impaired in other areas and how an inability not to be fooled by an optical illusion would enable the autistic to become a college professor or administrator in a major university.
To his credit though, Cowen does acknowledge that there are at least some autistics who can't hold jobs and are truly impaired by their disabilities. Dr. Cowen should know I am one of these people. I could not even cut it as a medical transcriptionist so i had to retire. I am not ever going to get a Ph.D. degree and be a college professor.
Dr. Cowen: Unlike Dr. Borcherds, I suffer from multiple impairments in my daily life. I have a defective f***ed up brain. . Your essay does not benefit me and the neurodiversity stereotypes you present in your essay only do harm.
Monday, July 13, 2009
interesting op-ed pieces from Morton Gernsbacher
In the second piece, she talks about how differences in brain imaging studies have shown how Women can have cortical thickening as opposed to men and in this case it can be considered merely a difference. However cortical thickening amongst autistics as compared to neurotypical controls is a dysfunction rather than a difference. The articles are trying to show that autism is not necessarily a disorder just because the brains appear different or function information differently.
One of the problems with the analogy of the second article that I see is that the techniques for measuring the brain with structural and functional MRIs are still too limited and primitive to detect anything other than superficial differences. Gernsbacher seems to conveniently forget this fact in her analogy. Does the fact that women and men have differences in cortical thickening and the autistics and nonautistics have similar differences show that autism versus nonautism is no more of a dysfunction of being a man versus a woman. Do the fMRI studies on face processing show a difference between autistis versus nonautistists is similar to differences between an American versus a Japanese? No, not really. Magnetic resonance imaging can measure some limited structural differences in the brain or which brain areas blood oxygen may flow to when doing certain tasks. However, they don't show how individual neurons work or which of them might be missing. They don't show differences in synapses or synaptic functioning that might account for the disabling factors of autism versus nonautism. They don't show a possible dysfunction in the sodium-potassium pumps in the neurons of autistics versus nonautistics. It is quite possible that at the deepest levels in autistic brains there are ionic differences in the functioning of neurons due to abnormalities of how much sodium versus potassium is in a neuron. The state of the art currently does not allow such comparisons to be made between autistic and nonautistic controls. It does not even allow the assessment of such things in living organisms period.
It is possible that this may be where Gernsbacher's analogy really falls flat. You could see the same differences in men vs. women as in autistics vs. nonautistics, but they could be there for different reasons. What if it were possible to scan for differences in individual neurons? Perhaps we would see no differences between men and women. Nor differences in the sodium-potassium pumps, blood-brain barrier functioning, etc. We might very well see these differences in autistics versus nonautistic controls. So, yes, in spite of the fact that superficial MRI scanning might find similar things in two groups prototypical versus nonprotypical they could mean very different things.
I also find Gernsbacher's analogies ironic in light of the fact of Isabelle Souliere's (someone whom Gernsbacher has collaborated with in the past) recent study showing the faster processing in the occipital lobes of autistics versus nonautistic controls. Souliere's was interpreting the findings that autistics were somehow superior in this endeavor and she put her own disingenuous spin with the media on her findings stating that she hoped it would not make persons underestimate educational potential in persons with autism. So, Gernsbacher and other Mottron/Dawson collaborators might not practice what they preach. On one hand it is just individual differences, on the other hand, it means that autistics in some respects are actually superior to neurotypicals. Sorry, my dear Morton Ann, but you can't have it both ways.
On a sidenote I once emailed Morton Gernsbacher asking about her essay stating in the title that autistics need acceptance and not cure. Though she may have never received funding from CAN or autism speaks, she has served them in an advisory capacity and has peer reviewed journal articles and research grants with them. I wondered why she would do this if she did not approve of a cure. She wrote me back a very nice/polite letter stating about how it was the duty of scientists to peer review and do editorial work of their colleagues and that she had not chosen the title of her article but that the media outlet who published her article had chosen the title with acceptance versus cure. In this article she claimed that persons with severe autism had made great contributions to the arts and science, yet neglected to give any specific examples. When I wrote Dr. Gernsbacher a follow-up email, querying what person with severe rather than mild autism could have possibly made great contributions to the arts and sciences she did not answer my email as she had previously the last one. I wonder why.
Well all I can say is that Gernsbacher's editorials and the double standards that she and her colleagues have of applying interpretations to their own research trying to show how smart autistic people are and how great autism is must be another example of convoluted neurodiversity logic.
Wednesday, July 8, 2009
Will Insurance reform legislation help autistics' social lives?
I realize I am rehasing some old issues I have written about before but it relates to the latest abominable campaign by the petty propagandists who run the show at Autism Speaks. I have already written about the despicable dog and pony show put on by autism speaks in terms of trying to encourage employers to hire autistics, yet not employing a single person with autism in their organization not even as a minimum wage file clerk with a job coach.
Sigmund Freud said to love and to work are the cornerstones of our humanity. So, it should certainly not be surprising that autism speaks has filled in the second half of the equation trivializing the horror of this terrible disability that presents autistics from having not only being deprived of their humanity by often not being able to work, given the high unemployment rates for autistics and others who are disabled, but also claiming that their insurance reform crusade is some sort of easy quick fix to ensure that autistics will have friends if the treatments of choice are paid for with health insurance. The following video has recently been produced by autism speaks:
In this brief clip, we see a boy with autism who apparently received treatments that were covered by insurance being invited to play a game of soccer by a neurotypical child and being accepted. We see a second boy with autism, who did not have the insurance coverage enabling him to get help, being rejected by peers.
My question to Autism speaks is Where's the beef? I have ofcited the problems with Lovaas(1987) and the groundless claims that have been made for it. But Lovaas (1987) only deals with IQ score tests and the ability to complete a normal first grade and subjective impressions by school teachers as the dependent variables being studied. There is no empirical evidence that this treatment enabled autistic children to better able to make friends or acquire a boyfriend or girlfriend. How can speech therapy enable a person to acquire friends. I am a formally nonverbal autistic who recovered his speech, yet the recovery of my speech has not enabled me to have successful relationships with people. I remain largely friendless and celibate. I also underwent perceptual motor training in the 1960s which might be comparable to some of the occupational therapy that these insurance reform crusades are trying to get the insurance companies to cough up the payment for. Not only were these worthless in helping my handwriting, fine motor and perceptual motor impairments, they did nothing to help me in my social life either.
So, really, how can any of these therapies help a child make friends and be accepted by peers. My inability to love and work due to my autism has stripped me of my humanity that Freud wrote about over a hundred years ago. Autism speaks in their zeal to provide a quick fix has trivialized my lack of humanity as well with this demagogic campaign and video. The capital behind this organization and others, and the other lobbies are so powerful, they will likely get the insurance reform they want. Not only in the legislatures of all 50 states but with the federal government as well, closing any loopholes. The results will wreak financial havoc on Blue Cross, Kaiser and other hapless health care providers when the plethora of families affected by autism are fueled with the false hope that this video gives, not to mention the lower quality of health care we will receive because these insurers have to pay for autism therapies. The cost of health care insurance in the U.S.A., which unlike other countries has no national health coverage ,will undoubtedly skyrocket even more, considering how much it is increased, considering as many as 1/150 children may be receiving these treatments once they are mandated.
I think of not only all the women that have rejected me and how unfriendly they were to me, I also think how hard it was for me as a child, constantly getting into conflicts with other kids my age, being teased and picked on, being rebuffed and being kicked out of their homes because they found my behavior and autism so offensive and they were so prejudiced against me. So, according to autism speaks' latest propaganda campaign, had these "evidenced based" therapies been available in my childhood, had I done these interventions instead of undergoing psychoanalysis, and my parents' medical insurance had paid for them, I would not have been rejected. I would have just been fine. Instead of the arguments and other kids kicking me out of their houses, I would have been invited on playdates. I would not have been rejected and rebuffed by peers. How comforting it must be for parents and their children to know, these "evidenced based" therapies will ensure that they will not only have to worry about unemployment, but will have a ton of friends and girlfriends to take to their regular high school prom. They can make their six figure income, marry their high school sweetheart they took to the prom and live happily ever after. Perhaps I sound bitter in this post because I am.
Well maybe after all these insurance bills are passed and the millions upon millions of dollars of reimbursement that will be coughed up for all of these "evidence based" treatments are paid for, maybe we will see some studies or peer reviewed evidence actually showing that at least some of these autistic children were able to lead a normal social lives. If not, perhaps autism speaks will have even more reduced credibility. No one will probably even noticed that they gave Laurent Mottron, a medical doctor who states that autism is not harmful and is no dysfunction and is only a difference and posthumously diagnosed one historical figure he could not have possibly met since he was born after this person's death half a million bucks to do research showing how well high functioning autistics can do on various tests and tasks. But if these insurance paid treatments don't work, perhaps some people will take notice. Perhaps, there will be more internal strife in this organization than we are now witnessing with the resignations of Allison Tepper Singer and Eric London. Perhaps AS will end up losing their donations. They might have to sell their Lear jet, cut Mark Rothmeier's (sp???) salary by a few hundred thousand dollars and perhaps cut out some other frills.
Of course, I might be wrong, we might be seeing some autistic kids getting married young, winning popularity contests and being elected presidents of their student body.
Let the chips fall where they may.