Friday, June 26, 2009
Very sad. One person paying three quarters of a million for therapy. One person remortgaging their house three times. One of the assembly speakers Joan Voss, whose son has Asperger's, makes the guarantee that with this bill parents will be able to purchase therapies that will allow all autistic children to be functioning adults as she alleges her son has. Bob Wright, who started autism speaks, also has a few things to say on the matter. At the end of the video the statement is made that these therapies will allow autistics to become functioning adults. Where is the proof? What person with autism became a "functioning adult" whatever that nebulous term means through any therapy? To quote the old 1980's television commercial, where's the beef? Adult autistics are ignored and are invisible. I have written about this in my essay The invisible autistic adult. At the time I wrote it some years ago, I was not aware that the children in Lovaas (1987) were adults-currently in their late 30s, early 40s. But I did ask about the adult outcomes. As I have written before, Lovaas and company have been paid at taxpayer expense to research and publish on these adult outcomes. To this day they still haven't. So one wonders if this insurance reform will really produce "functioning adults" Course that term could have a variety of semantic interpretations. Noah Greenfeld, one of Lovaas' first research subjects, may be a functioning adult, but his functioning is quite low and he will remain in institutional care the rest of his life. I think of the money my parents paid for my treatments. particularly the sensorimotor training I had which did nothing to improve my fine motor coordination, handwriting problems and perceptual motor impairments in spite of the usual claims of amelioration that were made to my folks.
I also wonder about the harm of these insurance reform bills. I currently have medical coverage on my parent's plan as a disabled dependent. I will lose that coverage when my parents who are in their 80s are deceased. Even if I inherit enough money or by some miracle I will be able to make a good living someday and purchase my own medical insurance, will I be allowed coverage after this law has been passed? After all this means that autism will be a pre-existing condition. Will parents with autistic child who don't have insurance be able to purchase it with their child's pre-existing condition. What if an autistic child needs a liver transplant or some other very expensive treatment? Also, this is not to mention how much health insurance rates and health costs, already prohibitively expensive for some with insurance rates rising will continue to rise. Does this mean others will have to pay more for their non-autism related treatments. I can only wonder.
In any event, I found this video interesting. Perhaps you will too. Enjoy.
Tuesday, June 23, 2009
One of the problems that I have with this is that Lovaas(the most celebrated of ABA practitioners and researchers) has already received quite a bit of money from the NIMH to study the adult outcomes of the participants of his subjects in his renowned 1987 study where he alleges a coin-flip probability of normal functioning in nearly half of the autistic children who as research subjects received 40 hours a week of ABA. I don't know how much money the NIMH awarded him to study these as yet still unpublished adult outcomes; however, this current study is running a tab of approximately $900,000. I don't feel that the taxpayers should foot the bill for more research into ABA therapy until we get the true story of what happened to those supposedly recovered autistic adults who are now in their late 30's, early 40's. Did they graduate college, did they become physicians, lawyers, dentists or engineers? Did they marry? Did their improved IQ scores remain stable? According to what little I have been able to gauge from my correspondence with Lovaas heir-apparent Tristram Smith, there were other psychologic tests administered to these subjects as adults as well.
Another problem is apparently only a pilot study has been done with TMS in which Casanova has gotten some results in a small group of autistic children. We still don't know what its effects are or lack of them is in autistic with just the TMS alone and no ABA other than these very preliminary findings. Of course, in a well-designed study we might be able to get an idea of which treatment affected what change.
Confounding variables were also dealt with in Lovaas(1987). What was found, however, is of chagrin to most behaviorists. Lovaas' work found that the active ingredient in ABA was the contingent use of aversives, such as hitting, slaps, water in the face and even in some cases electric shock. Without the aversives Lovaas (1987) would not have its marketing points and ABA never would have been able to achieve its current status as a cottage industry. This is in spite of the fact that the Hughes act outlawed aversives on developmentally disabled children in 1991. Therefore in jurisdictions such as my home state of California where aversives are a no-no, ABA is dishonestly marketed. Lovaas claimed in a rebuttal to his detractors written about 8 years ago or so that he had found new methods that made the use of aversives obsolete. If this is the case, to the best of my knowledge, he has never presented any evidence of this in a peer reviewed journal-the same fate that has become of his apparently NIMH funded aborted study of the adult outcomes of these children.
Transcranial magnetic stimulation may or may not be a state of the art treatment that will produce pie-in-the-sky rather than shit-from-the-sewer results in persons with autism. Interestingly enough, John Elder Robison, who wrote the bestseller Look Me in the Eye has gotten into the act This is in spite of the fact that on page 5 of his book he states that Asperger's is not a disease but a different way of being. He went on to state there was no cure and no need for one. Yet now he seems to feel the need to be a guinea pig in TMS research stating:
"I knew how much I had struggled as a young person - not knowing, being called 'retard' or 'freak.' This might help young people."
A possible complication from TMS is that it can induce seizure disorders. But supposedly, technology has improved and people have learned how to use this effectively enough to avoid giving someone a seizure.
Though this might be a good line of research at some point in time, one problem I have is that not enough is known about the etiology of the brain dysfunction responsible for ASD's. I suppose if Dr. Casanova were available to me he could explain the rationale to me based on what is known of the neurophysiology of autism aside from the work he has done on minicolumns. It may be that the autistic brain has various things wrong with it in various regions spread out diffusely within the brain. There may be an elaborate mirror neuron system with a variety of connections and it might be hard to find anything that is wrong. I guess Dr. Casanova being the recipient of the grant may have to show some evidence that this is a promising line of research and possible treatment of autism. Of course the same cannot be said of Dr. Lovaas and his cronies. If the work is replicated by a researcher besides Dr. Casanova perhaps studies could be made of TMS in lieu of ABA rather than as an adjunct with ABA. As regular gadfly readers (of which I know there are not very many)I am a cynic when it comes to anything in autism research or the new autism treatments that come up not infrequently as variable flavors of the month. This work may or may not yield some promise for autistic people, but it may not generate anything other than a bitter harvest for years or decades to come. Also work in neurofeedback such as what Jaime Pineda and Lindsay Oberman and their ilk are doing may also be promising avenues. This work may generate figurative diamonds in the rough at some point in time. Much work needs to be done though.
For some strange reason T.A. was not identified as having ADHD and learning disabilities until well in adolescence. It was during his junior year in high school that his parents had taken him out of the public school in which he had apparently never received special education services in elementary, middle school, and well into his high school education. I have to wonder why the parents had not noticed there was something wrong with their son until he was a teenager and then apparently decided to send him to this residential school at a cost of more than $5,000/month.
The New York times article goes on to state that the City of New York filed a friend of the court brief supporting the Forest Grove school district in Oregon. The amount of money that NYC spends on private school tuition for disabled children has jumped from 53 million to 89 million in only two years. I wonder how much more it will jump in New York and in other cities because of the supreme court's decision.
David Souter, a more rational head on the U.S. Supreme court and one of the three dissenters of the ruling ,stated the implications well:
“Special education can be immensely expensive, amounting to tens of billions of dollars annually and as much as 20 percent of public schools’ general operating budgets,” Justice Souter wrote. “Given the burden of private school placement, it makes good sense to require parents to try to devise a satisfactory alternative within the public schools.”
In light of the supreme court's decision in the Shannon Carter case saying that taxpayers were required to pick up the tab for uncredentialed personnel teaching disabled children, one has to think about the implications. It will only mean private special education schools of dubious value will be an even bigger growth industry than ever before.
Apparently anyone who decides they have autism or Asperger's syndrome well into adulthood can start their own private school or become a consultant without licensing or credentialing of any kind. one example of this phenomena is valerie paradiz formerly an instructor at Bard College and author of the book, Elijah's cup, dealing with her son's asperger's syndrome then her own realization well into adulthood that she herself was on the spectrum in spite of being a college professor and a one time wife and mother. Ms. Paradiz has a Ph.D. in English literature with no training or formal credentials whatsoever in the field of autism or autism education. This did not stop her from pursuing a career as an autism consultant and apparently opening up her own private special ed school for persons on the autism spectrum. How many more Valerie Paradizs and $100 an hour phone consultation William Stillmans will come out of the woodwork with this new decision?
The Carter decision also set the precedent for a New York court decision Malkowitz v. DeBuono which paved the way for uncredentialed, untrained Lovaas/ABA therapists to practice at taxpayer expense.
These court decisions paved the way for allowing ABA to become a cottage industry, at least in the USA, allowing 20-year-old college students with no training, experience whatsoever to come to people's homes and be Lovaas therapists.
Because of this decision and T.A.'s parents' decision to wait until he was well into adolescence to send him to this exorbitantly expensive private school, he will probably have the taxpayers picking up the tab for all sorts of special ed goodies until he is aged out of the system at 21 or 22. How many other kids will this affect? Again, I do question what difference these private schools will make in their lives as well as the very expensive ABA therapies. How much will it really help them? Perhaps the money would be better spent using a suggestion I made in a previous gadfly post
I wonder how much money will be lost in property tax revenues from the various cities. How much will the education of regular education students suffer? Will this mean that houses get burglarized and burned down because there is no money left in municipality's budgets for police and fire protection after they are decimated with all the children who will be able to more easily attend private special ed schools on the taxpayer's dime? Then, if IDEA is ever fully funded with the federal government picking up 40% of the costs we have to wonder where all the money for federal expenditures will come from after they end up applying for social security and section 8 housing as adults after these private schools have not helped them function better in society at all.
Saturday, June 20, 2009
It seemed strange to me that the Combating Autism Act was passed by congress, which was lobbied by CAN (the predecessor of Autism Speaks) and other pro-cure groups. The only intent of the act was to find ways to cure and prevent autism. The IACC grew out of the combating autism act which would make decisions on how to best dispense research dollars on projects that would find ways to cure and prevent autism. The law stated that one of the public board member of the IACC had to be on the autistic spectrum. Because of his prolific conference appearances, Shore came recommended to serve on the panel in spite of the fact he has publicly opposed a cure for autism. This seemed strange to me. It also seemed strange to me that neurodiversity proponents like Ari Ne'eman and Katie Miller would be allowed to testify before the IACC on the taxpayer's dime about how terrible a cure for autism would be and how they have some quick solutions. Now, the story gets uglier by the minute. We see Robison, someone who was married, had a kid, worked successfully for many years and did not find out he had Asperger's well into adulthood being chosen to be on a panel with Shore that reviews research grants to be applied to autistics such as myself and others. Probably 99.9% of us are far lower functioning than they are and at least some of us would like a cure.
The Combating autism act and the IACC and the federal government program that reviews how research dollars subsidized by tax dollars taken from us by force that decides who and what get funded, and by anti-cure autistics. Well another fine example of our tax dollars at work. *Sigh*.
Friday, June 19, 2009
Sometimes i would make above average errors at work, though there was some discrimination as well, (emphasis added) this does not fit in with neurodiversity's solution of accommodation.
She then goes on to state:
He blames his being autistic for all of his problems and doesn't consider that the problems may be due to discrimination rather than the fact that he is autistic.
So even though I highlighted the part of my article from which she quotes as acknowledging that discrimination I received in the workplace was in fact part (though not all) of the reasons I had job problems, she still goes on to state that I don't realize my problems might have been due to discrimination. This shows that sadder but wiser does not even bother to read very carefully items she quotes from. But no, though people's prejudices were a part of the reason I was forced out of the workplace it was not the entire reason. I did make mistakes on jobs and had other problems. Also, the fact that I could not apply myself in school and learn computer programming or other skilled work (which I did try to learn at one time) were definitely factors that made me less employable. The disability to apply myself have executive functioning were intrinsic disabilities, this was not due to societal discrimination. Had I been able to learn to be a good computer programmer (or even plumber or whatever example you want to fill) I might have still had some problems due to people not liking me due to my loud voice or funny movements, I have no doubt that I would have been able to continue working and found a job where my idiosyncrasies would be overlooked if I had a skill that was in short supply and huge demand. This also contributes to problems in the workplace for autists.
She then goes on to quote the part where I talk about self-injurious behaviors and ask what ND's want to do about that. She talks about how her sister had self-injury issues and said the solution was simple for her:
I can come up with an easy answer for that one: If society is changed, people won't see the need to dope them up with behavioral meds and do all kinds of psychologically harmful things to them to get them to stop them from banging their heads. My sister used to headbang, but we figured out that the problem was due to us yelling and bickering too much and because of us yelling at her. We have refrained from doing so and the headbanging problem, while it hasn't gone away completely, has lessened. Whenever I catch her trying to headbang, I just turn her face so that she is looking towards me and tell her "no." I then give her a hug to make her feel better and everyday, she is doing better.
Hasn't gone away completely? Does that mean she just does it five times a day instead of ten times a day? This lady is certainly vague here. Or assuming the headbanging has mostly gone away, how discomforting it must be for the parents who spent tens of thousands of dollars on ABA and biomed and still have their children headbanging or the ones who were presumably able to eliminate it spent all that money for naught. This lady must not have really gotten any wiser despite her nom de plume, as she could have hung out her shingle, cured or at least mitigated every single low functioning child who engaged in self-injurious behavior, charged less than one-tenth of what ABA and biomed practitioners charged and still become a multimillionaire. One must wonder if she really has this solution, why hasn't the world beaten a path to her door?
She is apparent disgusted by the fact that I have criticized neurodiversity for not wanting to help people with autism who are nonverbal:
Jonathan Mitchell goes on to say that "even assuming [facilitated communication] could be used for every nonverbal autistic certainly is not the same as normal speech and would not enable them to function at the same level as a normal speaking person." There we go again with the disgusting crap about how only "a normal speaking person" deserves to be emulated. This destructive drivel has been the justification for the harm of so many autistic persons. Jonathan Mitchell, if you are reading this and think that a person being "low-functioning" is a reason to do all kinds of crap to get them into the "normal" circle or "help" them
So apparently club ND just wants nonverbal autistics to rot. Wanting an autistic person to be able to communicate is just "disgusting crap". I wonder how parents of autistic parents who wish for their nonverbal children to speak would like to be enlightened that giving a nonspeaking person with autism speech is only "destructive drivel". If others of the ND persuasion feel this way, then they are lying when they say some of us misrepresent ND by saying they don't want to help persons with autism. This person clearly does not want to help persons with autism speak, how else can this be construed?
She then goes on to dispute what I say about autistic having problems with unemployment pointing out that "some autistics like Stephen Spielberg" have made a lot of money, yet provides no evidence that Spielberg is in fact autistic. Again, we see the use of celebrities and historical figures as examples of autistic successes because they can't find very many success stories among persons with legitimate autism.
She then goes on to talk about how I have taken umbrage to the fact that many in club ND have blamed me and other "curebies" for Katie McCarrons murder by virtue of the fact that autism speaks supposedly made a video saying that autistics would be better off dead shortly before Katie was murdered. Somehow the causal relationship there eludes me. I wonder why no tears are shed for Ashley Brock or many of the other autistic children who drowned or were run over by cars or trains, killing them in childhood. ND does not want to do anything about this, they want these people to continue being autistic so this can happen, so complaining about Katie McCarron's murder is certainly hypocritical.
She then goes on with these words of wisdom which she was apparently quoting from "The autism bitch from hell" About how autistics like me are just parasites on the dole and are just victims of learned helplessness, using our autism as an excuse for everything:
They cling to their autism diagnosis like it's a security blanket that protects them from ever having to take responsibility to improve their lives. They reflexively oppose any efforts by autistic activists to raise the issue of employment discrimination because they fear that they will lose their disability payments if other autistic people get jobs. They will grovel at the feet of any bureaucrat who can give them a benefit check, pat them sweetly on their incompetent little heads, and reassure them that they're not to blame for any of their failures because their poor defective brains weren't capable of anything better.
I find this statement rather odd in light of the fact while Frank Klein and Amanda Baggs, two of the most prominent proponents of neurodiversity, as far as I can tell never worked a day in their life and collected thousands of dollars in social security and section 8 housing, subsdized by the taxpayers. In spite of multiple firings and tremdendous problems in the workplace, I worked far more than I didn't work from age 24 to 51, paying thousands of dollars in taxes. In fact the last 9 years I worked I was an independent contractor rather than a statutory employee, paying double the social security taxes. Though I have applied for SSDI in my 50s, it is improbable I will get it and it is based on tens of thousands of dollars I have put into social security. What a bunch of nonsense and drivel this young lady is espousing. I wonder why she is not critical of Frank or Amanda for all of the thousands of dollars they have cost the taxpayers. If anyone grovels at the feet of bureaucrats that will give them a disability check it would seem to me to be a number of neurodiversity proponents, who claim that they deserve this money and would turn down a cure, even if it means that there not being cured would have to be subsidized by taxpayers.
The thread goes on with responses by various posters to sadder but wisers article comparing me to a nazi who caused the holocaust, with an uncle tom black person and someone violating others civil rights. She goes on to call me an uncle tom autistic.
In another post in the thread sadder but wiser gives a plug to Phil Gluyas' Mitchell's gadfly website. This is in spite of the fact she herself expresses disdain for Gluyas obnoxious behavior but does not like him very much herself but justifies her plug with "The enemy of my enemy is my friend" cliche. From what I have seen most of Gluyas' fellow neurodiversitites don't even like him very much. He is an embarrassment to their movement by his imbecilic comments, his rudeness and obnoxious behavior. He was even threatened with being banned from Wrong Planet and had to leave the website in order to save face. Most of his fellow NDs I am sure wish he would join the other side and become a curebie. So I must be making an impact if this gal has to stoop to giving Gluyas a plug.
Someone else took a cheap shot at me and stated that someone who met me told them that I often smelled bad because i did not shower or brush my teeth or change my clothes and speculated this may have contributed to my job losses and lack of social contacts. Actually, at one time this was partially true. Though I changed clothes and brushed teeth, I did not always shower and used deodorant and had issues with hygiene. This was up until the late 1980s I wrote about it in my article about undiagnosing bill gates and other persons. Being fired from a job where one person said there had been problems with hygiene pretty much cured me of this and I then was able to take better care of my hygiene in spite of executive dysfunction problems. Persons claiming Bill Gates is autistic have used this hygiene argument to try to prove he is on the spectrum. So, the ND's know that this is one thing that handicaps autistic persons. However, I did not get involved in autism society activities and meeting others on the spectrum until 1991. So assuming this person who allegedly knew me really did tell that to this other person, it would just be from having read what I wrote in my article rather than having met me and noticing that I smelled bad. Of course, leave it to club ND to claim they want to treat persons with autism with respect and then resort to these cheap shots.
They also claimed that I often insulted persons and did not refute arguments with facts. I never insulted anyone unless they insulted me first. Of course, now I try to take the high road and regret that I did not heed the don't feed the trolls signs and responded to the flame-bait that was thrown at me. I did make one snappy comeback today to Socrates who was bashing me in Gonzo's forum today because I just could not resist. Since Gonzo has comment moderation I am not sure she will publish it. However, this is a rareity and it was in response to Harry Williams (Socrates) insults. This is an individual who often likes to take cheap shots at my disability in finding girlfriend. It shows the character and the hypocrisy of club ND along with the statement that somehow those of us who wish for a cure grovel at the feet of bureaucrats to get a check when Klein and Baggs, their major spokespeople are about the most prolific collectors of welfare and subsidized housing around.
Funny that they would call me an uncle tom autistic who wants to maintain the status quo, when I have been very critical of biomed, ABA, and have urged the abolition of the IDEA. Ari Ne'eman and ASAN are lobbying congress for full federal funding of special education, so more kids can be segregated in special ed schools, exploited and treated like crap while their parents and special educators play God with their IEPs. Interesting that Sadder but Wiser calls autism speaks a hate organization, yet does not seem to mind the fact that Michelle Dawson who claims that AS wants a short future for autistic people continues to work in the research group of Laurent Mottron who has received a half million dollar grant from the organization she detests so much. When asked why she continued to work with Mottron and why she did not resign in protest all she could come up with was the stupefying copout that "science wasn't politics". I wonder why I am an uncle tom autistic and not Ari and Michelle. That is pretty funny actually.
Well Sadder but Wiser: Thanks for giving me a good laugh and for devoting so much of your time to giving your very pathetic critiques of my work and also showing me that this proves I must be making an impact.
Thursday, June 18, 2009
The issues involved in Souleries, Dawson's, Boelte's etc. studies are whether or not intelligence in autistics has been underestimated. This might be due to the fact that the Wechsler is not a valid IQ test for testing autistics due to their unique way of being. The Raven's or some other instrument might be more valid. If so, then we can do a better job of teaching autistics and their overall prognosis might not be as poor.
Part of the problem with the Souleries study was that the autistic participants, as measured by the Wechsler are reasonably intelligent on average to begin with.
The average full scale IQ was 100.87 with a range of 85-121. The average verbal IQ was 99.20 with a range of 81-121 the average performance IQ was 102.8 with a range of 95-120. Therefore the majority of these subjects were likely of average or better intelligence to begin with.
But let's dispense with all of this and get to the real nitty gritty. What if the Mottron group is correct in their assertions that intelligence in autistics has been underestimated. What if many if not most autistic people are truly intelligent? Aside from the obvious fact that it is quite possible the autistic with an IQ of greater than 100 will have a more favorable prognosis than one with an IQ of less than 70, lets just confine the question to higher functioning autistics, lets say those with a verbal IQ of 100 or higher. Or even some persons with autism who seem very intelligent to me based on my subjective perception of interacting with them on the internet without knowing how well they might do on a standardized test.
At the risk of immodesty, I count myself in this category. I believe that I am an intelligent person. I am able to express my thoughts well and write a reasonably good blog post. At the age of 11 my reading ability was tested at a tenth grade level. This is in spite the of the fact that at this time I had never received a mainstream education of any kind. I also managed to graduate from college, something some neurotypicals have not been able to do. Yet, I had to give up working, I have had problems with funny movements, motor impairments, inability to completely care for myself and immense problems with social relationships and phobias. My voice is uncontrollably loud. Autism has made my life hard and has incapacitated me, except for being able to write some of these blog posts. This blog has actually given my mundane life some meaning.
Moving onto other people, I see glimmers of intelligence of a number of my blog readers with autism. First there is Jake Crosby who spent a fair amount of time in self-contained special education classes. He probably was not able to receive the same educational opportunities as some other children who were not on the autism spectrum. At age 20 he currently attends Brandeis, a major university. He writes very articulate and thoughtful posts on the Age of Autism blog. This is to the chagrin of neurodiversity proponents who complain about autism speaks and other organizations they don't like not putting autistics in positions of power or allowing their voices to be heard. Yet when age of autism put this autistic individual on their editorial board at an extremely young age, they immediately cried "token autistic". Also condescending statements and attitudes towards Jake due to his age were at times expressed. Jake seems well read to me on a variety of autism issues and has shown intelligence to me. Roger Kulp, another one of my readers with autism, also seems to show a high level of intelligence based on some of the comments he has written on my blog and others. There is no question that this individual's intelligence is more than intact. Stephanie Lynn Keil is yet another example of this. In addition to this 21-year-old young woman being an extremely talented artist, she also has an IQ which may be in the genius or near genius level. In spite of spending much time in institutions during her childhood, she has managed to become educated enough to read psychiatric textbooks and understand them with great precision.
I offer apologies in advance to any of the above-mentioned individuals if I made any factual errors about them or they were not happy about me mentioning them in a blog post.
What do these three (four including me) intelligent individuals with autism have in common. We all hate our autism. We don't subscribe to the neurodiversity philosophy and wish we could be cured. Why must that be if we are so intelligent?
In Jake's case, he got a poor grade on one of his history papers because he was too disorganized and lacked the executive function to cite references properly. His autism has made it difficult for him to plan and do things that he wants.
Roger Kulp's behavior has regressed at various times in his life. He has not worked and has had to be on SSI. He has had problems with elopement and other problems with autism that have made his life difficult in spite of having an intact intelligence.
Stephanie is also on SSI and has had problems with self-injury and other issues. She lived in institutions for a number of years but fortunately was able to live with her father at his house where I think she still lives.
How can these persons have all these problems when they are intelligent, yet, according to Mottron and to others intelligence in autistics means a good prognosis and means we should not regard them as write-offs? Perhaps the answer is that intelligence does not necessarily mitigate the problems of autism in most persons with this affliction. A score on the Wechsler, the Ravens or any other standardized test, the ability to solve problems rapidly in an fMRI scanner probably does not correlate with the ability to pay the rent, have social relationships or control difficult behavior.
Perhaps it is time to rethink our view of recognition of intelligence being a salvation for those on the spectrum who are high functioning (at least intelligence-wise).
I hope none of the above individuals takes offense at my writing about them.
Wednesday, June 17, 2009
Another absolutely bizarre complaint about autism speaks frequently made by ND proponents yet no one else is the absence of an autistic member of the board of directors. One wonders how they would feel about a pro-cure autistic being on that board. Would he/she receive the usual nasty neurodiversitite slur of being a house autistic or token autistic or quisling. If only an anti-cure rather than a pro-cure autistic should be appointed to the board of directors then one wonders why people should be appointed to the board of directors of an organization whose goals they totally oppose. I also wonder why not having an autistic member on the board of directors is a more important concern to club ND than the fact that as far as I can tell autism speaks does not have a single paid employee with autism working in their organization, not even as a minimum wage file clerk with a job coach. Autism speaks apparently spends money on huge executive salaries, private jets and possibly some other frills, yet can't help one of the many persons with autism who are unemployed make a living. This phenomena is especially intriguing in light of the autism in the workplace horse and pony show that AS puts on where they highlight employed (or in some cases semi-employed) persons with autism, talking about how urgent the problem of autistic unemployment is and how great these others were employing some autistic people. Apparently they take the attitude, it's fine if autistics work someplace else, but we don't want these incompetent, badly behaved people (from their point of view, not mine) screwing up our organization. How typical for those in neurodiversityland to miss the forest for the trees.
Clay Adams, one of the most cruel neurodiversity cyberbullies and hatemongers, is apparently dumbfounded that I could be a pro cure autistic and write posts on this blog to this effect. I must be a paid shill for generation rescue or autism speaks, there can be no other explanation for my behavior he has claimed. I must confess here that once in my life I did accept a free meal from autism speaks when my friend Matthew Belmonte who has his research funded by AS was in town and I met with him, Portia Iverson and some other people. Interestingly enough, I sat across the table at this dinner from the eminent Dr. Laurent Mottron whom I will write more about below. Dr. Mottron and I had a chat, he seemed somewhat intrigued by me and I discussed my job problems with him and he was curious why i was fired from various jobs and I told him about some of the issues I had; of course this is neither here nor there. I also was a research subject of Eric Courchesne's and received a small amount of money from his group for participating as his subject. I think some of this research may have been funded by CAN, the predecessor of AS. Now that I have declared these possible conflicts of interest, I will go on record that other than these trivial exceptions I have never received a dime from autism speaks or any other pro cure organization ever. I have never received a single dime from any of the posts that I have written in this blog.
Paradoxically, one of the things that seemed to inflame Mr. Adams the most about me was that I had the temerity to criticize his idol, Michelle Dawson. He stated that he wanted to give me a black eye for this. Why is this a paradox? Well Michelle Dawson works in the group that Dr. Mottron heads who was at this autism speaks dinner and conference in Los Angeles, because he happens to be a recipient of this funding. According to the AS website in 2008 he was awarded a grant of nearly half a million dollars. For some reason Adams was concerned that I was on the payroll of AS or some other likeminded organization, but apparently had no qualms about Dawson's involvement with this organization. I am still baffled by this paradox.
I wondered if Michelle Dawson had any involvement in any of the autism speaks funded projects that the Mottron group conducts. Yesterday I had my answer when I found out about the new study that Dr. Isabelle Soulieres recently published. Michelle Dawson was indeed a coauthor. This study was partially funded by Autism speaks!
I wrote in the previous post about how the Mottron group may be putting a rather disingenuous spin with the media on this research so I won't repeat all of that here. However, I would like to print one additional statement that Dr. Soulieres made to the media about the implications of her newly published and completely unreplicated study.
I hope the finding will convince people that autistics have a higher intellectual potential," said lead author Isabelle Soulieres, a post-doctoral fellow at Harvard who completed this experiment in Montreal. "That way, people will expect more and give them more opportunities to learn
I see that Estee Klar-Wolfhond, author of the Joy of autism blog, has given this study a shoutout in her latest post. How soon will other neurodiversity autism speaks haters follow suit? Since this study has just come out I suspect there will be more takes and more spins on this study and the absolutely unproven allegations that the results could help autistics learn better or function better in society. How soon will it be before Soulieres, et. al. means that finding a treatment, cure or prevention will be absolutely superfluous according to the ND spinmeisters? I suspect we will be seeing more from them in this vein.
One only has to wonder how people who urge a boycott of Lindt Chocolate, Toys 'R' Us and other companies that help donate money to autism speaks can reconcile the fact that their idols Mottron and Dawson have accepted so much money from this organization? How will they be able to reconcile their boycotts yet ignore the fact the organization they loathe so much has paid to help them spew out their propaganda that autism is not a disease but only an alternative way of being and that with the right accommodations they can do anything a nonautistic person can do. The Soulieres study will likely be used as evidence of this, as was Dawson (2007) when it first came out.
I can only wonder about these things and see what happens but I reckon only time will tell.
Tuesday, June 16, 2009
"This study builds on our previous findings and should help educators capitalize on the intellectual abilities of autistics," says senior researcher Laurent Mottron, the new Marcel & Rolande Gosselin Research Chair in Autism Cognitive Neuroscience of the Université de Montréal and psychiatry professor. "The limits of autistics should constantly be pushed and their educational materials should never be simplified."
I emailed Dr. Soulie'res, asking her for a .pdf copy of the study and she was nice enough to promptly reply with a copy of the study. I have done my best to read the study though I did not understand a lot of it. I am curious as to how this study which shows a subset of persons with autism to be significantly faster at processing questions on the Raven's matrices than typical controls can be utilized as a real world application which would allow persons to use the results to help autistics learn or function better in society, which it seems to me what Dr. Mottron is implying. He and his sidekick Michelle Dawson also coauthored the article, though Soulieres was the lead author.
On perusal of both the statement to the media, the abstract of the study and in fact the study itself there seem to be problems with this interpretation. First we see the initial sentence of both the abstract and the actual study itself which may serve as a potential red flag:
Recent behavioral investigations have revealed that autistics perform more proficiently on Raven's Standard Progressive Matrices (RSPM) than would be predicted by their Wechsler intelligence scores.
The study cites Dawson(2007) as evidence for this assertion in which huge differences were found between the scores of autistics on the Wechsler IQ test as opposed to much higher scores on the Raven's matrices. After the study was published Dawson seemed to think her findings should influence all public policy towards autism with the statement:
I hope this paper will have the practical effect of making it less likely that autisics will be written off, as autistics are so routinely written off by autism advocates in Canada and elsewhere.
Souleries also cites a study done by Hayashi showing that persons with Asperger's who were matched with typical controls on Wechsler IQ outscored them on the Raven's. The problem with this interpretation was that Souleries only included persons with speech delay and problems in her paper who would have an autism diagnosis and excluded those with Asperger's so Hayashi would most likely not apply.
Another problem is that a study Boelte(2009) has largely failed to replicate Dawson(2007) so the question is still open as to the superior of Raven's scores versus Wechsler in autistics. Though Boelte found that some autistics scored higher on the Raven's than the Wechsler, the effect was much less pronounced than the one found by Dawson. It was also limited to lower functioning autistics (meaning those with an IQ of less than 85). The subject pool used by Boelte was also different than those by Dawson-they were a lower functioning group. Had Boelte used a group more similar to Dawson's the effect of Wechsler's versus Raven's would likely be negligible.
In contrast to Dawson's pollyannish statement Boelte makes a more guarded statement:
in conclusion, the claim that intelligence has been underestimated in autism seems somewhat premature.”
Kim Bodner who works in Nancy Minshew's group has also studied this question with high functioning autistics. She has found no significant difference in the scores of HFAs in the Raven's vs. Wechsler. I think her work has only been confined to a limited group of autistics, only high functioning ones. Also, I don't think her work has yet been published in a peer reviewed journal, but so far has only been presented as an IMFAR poster. I think her study will be published either at the end of 2009 or the beginning of 2010.
While there is a subset of persons on the autistic spectrum who score substantially higher on the Raven's than on the Wechsler it would appear to be mostly confined to lower functioning autistics who would not necessarily even be in the majority of all autistics. Further studies by the Mottron group, Boelte, Minshew's group and others may shed more light on this question.
In the latest study there is about a 6:1 ratio of male versus female autistics as opposed to the 4:1 ratio found in the general population. Souleries does not acknolwedge any limitations in this work. Of note, the autistics were also of normal intelligence with IQs of about 100, so whether or not these findings are applicable to lower functioning autistics is in question. Since they were matched with the typical controls they were different than at least some of the subjects in Dawson (1987) who had lower Wechsler IQs overall than typically matched controls. It is possible that the lower functioning subjects in Dawson (2007) would have to be excluded from the Souleries study due to the fact they would make too many head movements, creating artifacts on the fMRI scans.
Another germane issue is the lack of discrepancy between the performance IQ scores and the verbal IQ scores of the subjects, an average of about 99 on the verbal portion of the Wechsler and about 103 on the perfomance. This might indicate these autistics were less impaired than other persons with autism such as myself who have a 40 point discrepancy between the two tests. My verbal IQ has been tested in about the low 120s and my performance IQ in the low 80s. I am good in arithmetic, general knowledge, similarities, high average on vocabulary and below average in comprehension. On the performance test I score in the severely retarded range in both the block design and the object assembly test (which entails putting together puzzles) which I have great difficulty in due to my perceptual motor problems. There are probably also examples of a number of autistic persons who have the opposite profile, relatively high scores on the performance test as compared to verbal IQ. I wonder if this research could be applicable to myself or those on the spectrum who conversely have a discrepancy with a substantially higher performance than verbal IQ.
In at least one paragraph of her paper Souleries is more cautious about the interpretations of her work than coauthor Mottron:
Although theresponse time advantage for difficult RSPM problems weobserved may reflect an underlying processing advantagein reasoning mechanisms enjoyed by autistics, additionalstudies directed at this specific question will be requiredto fully explore this possibility.
In the last paragraph of the study unfortunately she makes a statement similar to Mottron's about how this work could be applied in the real world to help persons with autism. Not just the study's subjects who are clearly not an extremely representative sample of autistics, but all autistics, as she does not seem to acknowledge the limitations of this study due to the characteristics of the experimental group.
On a more positive note, in spite of problems with the interpretations the author's claim have real world applications, some of the things in the study were quite fascinating (at least to me). Dr. Souleries talked about how faster processing times may have reflected the lack of neural connections in autistics that had been cited by other studies in various brain areas, resulting in compensatory mechanisms in other areas:
Regarding possible developmental mechanisms leadingto the atypical autistic activity patterns seen in our study,clues may be found in recent studies of white mattermicrostructure [Barnea-Goraly et al., 2004; Courchesne etal., 2001; Herbert et al., 2004; Ke et al., 2008; Keller et al.,2007] and functional connectivity differences in autism[Just et al., 2004]. In autistics, Just et al., have observedreduced functional connectivity between frontal and parietalcortex in a variety of tasks, including sentence comprehension[Just et al., 2004; Kana et al., 2006], n-backworking memory tasks [Koshino et al., 2005, 2008] andresponse inhibition tasks [Kana et al., 2007]. Similarly,reduced functional connectivity between early visual areas(BA17) and inferior frontal cortex was found in autisticsduring a visuomotor coordination task [Villalobos et al.,2005], but this decrease was concomitant with increasedfunctional connectivity between the thalamus and its frontaltargets [Mizuno et al., 2006]. Given existing reports ofatypical connectivity in autism, there are several availableexplanations for our findings.One possibility, based on proposals advanced by Just etal. , is that increased use of occipital brain regions inautistics reflects compensatory activity arising from anatypical neurodevelopmental trajectory, based on significantcommunication restrictions between prefrontal andoccipital regions. In this scheme, inefficiencies in engagingprefrontal mechanisms could result in the development ofcompensatory strategies and processing mechanisms moreheavily reliant on occipital and posterior parietal corticalregions. These compensatory mechanisms would have tobe as effective in supporting reasoning as the more typicalmechanisms relying on prefrontal function.......
So even though I find Mottron's statement to the media to be offensive, this study, I must concede, may not actually be useless. It may actually give some clues to how the brain in at least a subset of persons with autism functions and processes information. The compensatory mechanisms of the occipital lobes in persons with autism as opposed to the deficient connections in the frontoparietal areas of autism that have been reported. These findings also seem to be consistent with the mirror neuron hypothesis that Marco Iacobonni and Mirella Dapretto have pushed as an etiology in autism. It may be similar to a blind person who has compensated hearing and can be prodigious in music or reports of deaf people being able to see more easily out of the corner of their eyes. Whether it could actually have any applications for even a subset of autistics developing compensatory mechanisms could be used in the real world is another question, however.
So, Dr. Mottron, I would like to ask you. What is the basis of this research, given all of its limitations, being able to help all autistics in educational and other achievements? What difference will it make in their lives? If you are going to make such sweeping statements to the media, why can't you be more specific? I really wonder what the answer to these questions are.
Monday, June 15, 2009
I agree we need a good prevalence study of ADULTS with autism spectrum conditions, and I haven't seen a study like this!
Anne Dachel, the author of the piece featuring SBC, makes the claim that because no one has done a prevalence study showing similar numbers of adult autistics with the 1/150 prevalence that has been cited for children in the CDC's two year old study that this somehow proves that this increase is real-that it was caused by vaccines or something else in the environment. If this environmental trigger could be identified future cases of most autism could be prevented. This could even lead to a cure for autism. There are a number of problems with this argument but since AoA has a well-known reputation for censoring comments that are not in agreement with their rather narrow view of autism, I will write a blog post here instead.
Actually I agree on the need for a good study on this issue IF FEASIBLE (with the emphasis being on if feasible) some time ago I wrote an article on this subject. However, I had another reason for trying to find the so called "hidden horde" of autistic adults besides from settling the question of whether or not there has been a true increase in autism prevalence. One other reason is that if we could locate autism in older people (let's say people over the age of 70) then we could perhaps persuade them to will their brains to science so postmortem autopsies could be done. To date, there have probably been less than three dozen autistic brains autopsied or at least studies involving cell counts in various nuclei or whether an autistic amygdala or cerebellum is different from an age and sex matched control have been few and far between. There are not really any adequate animal models of autism since animals can't speak or interact socially the way humans can. Also, since animals can't handwrite we can't know whether or not they have fine motor coordination problems similar to what I have. MRI's and fMRI's are very limited given the current state of the art in what they can resolve. Also, studies involving fMRI's and event related potentials of the type that Dr. Lindsay Oberman and company do on mu wave suppression are quite limited in that they can only be done on a subset of persons with autism, usually high functioning males as the lower functioning autistics would not sit still for the studies and artifacts would confound the readings so that valid results would not be able to be obtained. It is quite possible that post mortem autopsies are our 'ace in the hole'. This could likely help us uncover the etiology of autism. For example we know a great deal about the etiology of Parkinson's disease in part because persons with Parkinson's die from the disease so postmortem tissue is available for autopsy.
I met pediatric neurologist Margaret Bauman and asked her why we did not know as much about the etiology of autism as that of Parkinson's and If enough brains for autopsy were available would it be possible to have that same knowledge for autism. She agreed with me and explained that a large part of the problem was that persons with autism lived out their lives. In fact the persons first diagnosed by Leo Kanner are probably about 75 years old now, so given current life expectancies in the USA, we are not going to be able to find persons whose brains are available for postmortem autopsies very easily. If it were possible to find older people with autism in the same prevalence numbers that we have for children, this might be a possible solution to this dead end street for research.
There is a problem with this approach here which I will outline.
First of all, it could be argued that the burden of proof should be on those people who claim there is an epidemic of autism and in fact predicate various biomed treatments on just that premise. Not to mention the AoA folks and others have urged the government to spend money on "fishing expeditions" to prove that vaccines cause autism with study after study producing the same negative results. Perhaps they can show somehow that these adults with autism in the same prevalence numbers do not exist.
In fact, Mark Blaxill, one of the staffers at AoA, has attempted to do just that. He has cited two different studies. One by Nylander that was done in Sweden in which searches of psychiatric hospitals were done and the adults with autism were not found. Another study was done by someone named Bard in South Dakota in which a group of persons with autism was followed into adulthood and then upon looking for more persons with autism it was found that they missed only one or two persons with autism. Blaxill claims that these two studies are irrefutable proof that there is no "hidden horde" of adult autistics.
Last year at the ASA national conference I heard a speech by Bryan Jepson, practitioner at The Thoughtful House in Texas which uses various biomed treatments. Dr. Jepson is also author of the book Changing the Course of autism. He had claimed in his lecture that there were several studies done in the USA that had tried to find autism in adults with the same numbers as children, but none of them had done so. I was fairly certain that no study besides the Bard study had ever attempted to answer such a question (excluding the Nylander study which was done in Sweden) so after the lecture I asked Dr. Jepson which studies they were. He immediately clammed up and basically said he was not sure but the studies had been done and that Mark Blaxill was a good person to consult on the matter. So basically the attempts to study this question have been very limited. There is a probable reason for this which I will go into later.
First, there are some problems with Blaxill's conclusions. When I was in email correspondence with Blaxill five and a half years ago he cited these two studies to me. Blaxill also stated that one point of evidence for an autism epidemic was that the increases in autism were geographically specific to various parts of the world. There had only been increased prevalence in the USA and the UK but not other geographies. This would be inconsistent with using a study done in Sweden since it is the geography that Blaxill is claiming is irrelevant. One also wonders what the probability is of an autistic adult presenting at a psychiatric hospital especially if they are higher functioning. One can look for gold in a salt mine but not have much chance of finding it. So I don't think the Nylander study really proves anything. The Bard study is also problematic in that it only covered a very rural part of South Dakota. Looking for high autism rates in rural rather than urban areas has certainly been shown to be problematic. This is borne out by the fact that the oft-cited 1/150 CDC study was an average between various parts of the USA. The rates in New Jersey were much higher than the rates in Alabama. Also, the various California reports have shown much higher rates of autism in Los Angeles than in rural areas of Northern California. From this I conclude the question of whether or not autism exists in the same rates in adults as it does in people born in the late 1980s and later has never really been studied satisfactorily at all.
One wonders about the feasibility of doing these sort of studies. Most have heard the old saw about looking for a needle in a haystack. This analogy might be applicable here. In the two CDC studies done showing high prevalences of autism in children in certain ages one reason such high prevalence rates were found was that the CDC has legal power to force people to comply with surveys. Most of the children found in the study with the average 1/150 prevalence were found in special education settings. Because of the IDEA law, special education students will be motivated to get an autism diagnosis because of services, therefore this makes children much easier to find. The California report seems to show that persons with autism are becoming much higher functioning as measured by IQ tests with the percentage of those with retardation and seizure disorders decreasing greatly. I seem to remember Fombonne has found similar things in his studies (someone correct me if I am wrong).
Persons over the age of 22 are aged out of the special ed services and after that point are either considered as recovered or as write-offs. So, where are these adults going to be found? How can Baron-Cohen or any other autism researcher do such a study and find the adults in the same number. Particularly the many higher functioning autistics and those with Asperger's syndrome and mild PDD's who were counted as "autistic" in the CDC prevalence studies? They will certainly not present to special ed settings as most of the CDC's 1/150 did. They will not likely be found in group homes at the same rate as in special ed settings. Since there was no IDEA when some of them were in school, they might not be able to be found or not found. So, it might be difficult to prove or disprove the hypothesis that autistic adults don't exist in the same number as children. Also, since they are not eligible for special education services, there won't be a lobby for federal funding of such a study and the CDC might not be motivated to do it. This does not mean they are not out there and that they don't exist. I know that I exist. I know that my friend Russell who I knew as a kid existed. I know that the kids I was in special ed with in the early 1960s, some of whom today would likely be diagnosed as autistic existed.
I say the onus to prove that these people exist should not be on me. It should be on Anne Dachel, Mark Blaxill and others who think the way they do to prove that they don't exist. I wish them luck in that regard, but for the above reasons I don't think they will ever be able to deliver.
On the other hand if anyone does have an idea of how these people could be located so we could persuade them to will their brains to science so the autopsies that might prove to be so useful could be done I would certainly welcome those.
Sunday, June 14, 2009
A few readers of this blog have commented on how I am always a critic, how my posts are always angry and I talk about what cannot be done for persons on the spectrum. I should offer some sort of solutions to the problems of autistics they say.
What these people say may be valid, but part of the problem is that I don't really have much to offer in the way of any solutions or ideas that will really help autistics function in society. I do not believe that autism is treatable let alone curable. But is it better to spend money on treatments of dubious value such as various DAN protocols, ABA, speech and occupational therapy whose results are questionable, at least to me? Or is it better just to accept the sad truth and just say that while persons can try to educate their autistic loved ones to the extent they can be educated, to try to help set up some sort of supports, other than that perhaps nothing really can be done that greatly improve the future of those on the spectrum. I have brooked no quarters that I long for a cure and I long for scientific research on the neurology and genetics of autism that at some point of time will point to legitimate treatments that will help autistic children, hopefully cure them and in the very best case scenario prevent them from becoming autistic in the first place.
It has been pointed out to me by some that these goals are very far off and not likely to happen in the foreseeable future. I will not be cured of my autism I have been told and it is quite possible no one else born in the last 6 years or so will be either. I must agree with these statements. It is true that the research that is funded by the federal government and by autism speaks and other entities has no short term practical applications. We can't just think in the long term. Autistic people need help and suggestions NOW. Last night an inspiration hit me and I have an idea how money might be better spent to help persons.
Before I state my idea I would like to comment on how money is spent on autism. We have the DAN practitioners that charge a great deal of money. Some of them I have remembered reading have hung out their shingles without clinical training or license of any kind. A few of them who are licensed physicians have been disciplined by their state medical boards, giving the DAN protocols a rather unsavory odor. The lack of peer review and evidence of DAN's successful outcome has not been daunting to most desperate parents. the secretin saga is one of the most flagrant and indeed saddest examples. Thousands of dollars are spent on ABA and some parents have taken out second or third mortgages on their homes to pay for this treatment that gives a promise of a coin-flip probability of complete recovery or cure for their children. The lack of published adult outcomes, the questionable methodologies of Lovaas (1987) have not deterred parents from trying to obtain this treatment for their children. Also, a great deal of money is spent on speech therapy, occupational therapy and other treatments of dubious value.
The Individuals with Disabilities Education act was passed in the mid 1970s with the intent of helping persons who are handicapped get the "free and appropriate education in the least restrictive environment" that they deserve. About 60 billion dollars a year is spent on special education, a 60 fold increase since the law was passed. This figure probably does not include attorney fees for special education litigation by both the parents and the school districts and the jamming of our court systems.
The IDEA in fact has generated a variety of supreme court decisions. The Shannon Carter case is of particular relevance as it paved the way for any person regardless of their license, credentials or lack of to hang out their shingle and be an autism practitioner. This is why ABA is usually done by college students most of whom have no license, qualifications or credentials and are not even old enough to legally buy a six pack. While there is board certification for ABA specialists, it is not done by the government as is the certification of doctors, dentists and psychologists. There are no government licenses or regulations and the BCBAs are accountable to no one but themselves.
Not only can special ed students be taught by uncredentialed teachers at taxpayer expense due to this decision, but apparently any aspie who was either self-diagnosed late in life or has a questionable diagnosis well into adulthood only after their own children were diagnosed with an ASD can apparently set up shop and charge desperate parents what the market will bear. I have been told that Michael John Carley who appears to have no formal training or qualifications is a paid consultant of some sort by the NYC school district. (Mr. Carley or anyone else can correct me if I heard wrong) Valerie Paradiz who also wrote about about her son and managed to receive some sort of diagnosis well into adulthood has hung out her shingle as an autism consultant and set up her own autism school. Ms. Paradiz is a Ph.D. in English literature with no formal training of any kind in autism whatsoever. Last but not least is William Stillman whom I have written about previously who self-diagnosed himself with Asperger's well into adulthood, has no qualifications whatsoever except a bachelors in education yet charges parents $100 an hour for phone consultations, though he is too ethical to charge for email consultations. He claims he can know exactly what an autistic child needs after spending ten minutes with him/her.
Are all these billions of dollars on autism well spent? I do not believe they are, so I offer an alternative. Instead of spending money on DAN protocols, special education, ABA, attorney's fees, etc. how about upon after receiving a diagnosis of autism at 3 or whatever age, the parents consult with a financial advisor. Instead the money can placed in the hands of someone (hopefully not a Bernie Madoff type) who will invest it wisely for the child. It might even be able to be invested in a tax deferred IRA type of account. A smart financial advisor would be paid approximately 1% of the portfolio which would be plenty of incentive to get good returns on the investment. The stock market though risky apparently generates returns of about 10% a year on average over the long haul. There are probably mutual funds that are less risky but could generate a fairly decent return over the long run. There might even be commodities that the savvy financial wizard could invest the money in.
Upon turning 22, the age which they would be normally aged out of special ed services in the USA, they could receive this account and it would become liquid. If they are too severely autistic to manage the money, a parent or other relative could be a trustee or executor of the money. If they are mildly autistic, they could likely become wealthy, possibly even multimillionaires if the portfolio was invested wisely, even with a conservative financial advisor. If they are lonely, plenty of people would want to be their friends. If they are horny males unhappy about their celibacy they will have the means to hire hookers. They won't have to worry about being fired left and right from jobs because they won't have to work. They also won't have to go to the trouble of applying and litigating for SSI. I do not believe the fact they never received ABA, chelation, DAN protocols, speech or occupational therapy etc. would make a difference in their lives or contribute to their being recovered from autism or being able to function better. Therefore I believe my idea is the best that can be done for persons with autism over the short term until cure and prevention are found.
Though I grew up in the 1960s before we had IDEA, ABA and the various autism treatments. My parents spent enough money on psychotherapy for me with various therapists to buy a huge building. This was in addition to the private special ed schools I attended that in those days were not financed at taxpayer expense. Also don't forget the tutoring I had for my perceptual motor problems and fine motor coordination and handwriting impairments that did not help me at all. Quite a bit of money was spent on that. My parents could have spent a fraction of that money on McDonald's stock in my name in the late 1950s when MCDonald's made their IPO and I would be a multimillionaire now. Or the money could have been invested in more conservative things and I still would have made out well. I would not have had to endure the humiliation of trying to make a living and being fired so much.
So for the readers of Gadfly who have complained I have no positive constructive solutions to offer, here is mine. If you have something better to suggest than the above, I welcome them. Good luck.
Thursday, June 11, 2009
Sullivan gets many of the facts incorrect naturally. One thing he does get correct is that it is Stephen Shore was the one who "leaked" the information about the article. However, he did not leak it to Jake or Best, he told me about it. Ari sent me an email asking me how I found out about the article after John Best and myself had blogged about it in advance of its publication. As a common courtesy I emailed him about Steve telling me about the article. Steve Shore and Jake Crosby had nothing to do with Best's blog post. I am the guilty party here. I have no regrets though. I emailed Best telling him that I had heard the rumor of the article featuring Mr. Ne'eman or being written by him published in newsweek. I suggested he might want to write an angry blog post about it at some point in time. Though I don't agree with Best on a variety of issues, nor do I condone a lot of his tactics, I do find his blog humorous and I enjoy at least some of the shots he takes at the neurodiversitites, who have not only trivialized my horrible disability but have not infrequently been tremendously abusive to me because I happen to be a spectrumite who publicly wishes for a cure for my autism.
I was not expecting Best to write a piece before the fact, I figured he might wait until after the newsweek article was published. To my surprise, I saw his article with the inflammatory headline "Ask Newsweek to Kill Ari Ne'eman". I read the article and decided maybe I should get in on the act. Certainly a proactive stance against this movement which trivializes the pain and suffering of so many is warranted. I also wrote a blog piece in advance. I knew that Age of Autism had a much larger readership than my piddling gadfly blog. Because I have given his work a shoutout, Jake has emailed me expressing his appreciation. Though we don't agree on a number of issues, Jake and I have become email pen pals. (hopefully Jake won't mind my writing about that). I suggested that he might want to also write newsweek a letter and maybe write an age of autism post, which he was glad to do as he feels the same way about ND as I do. So, it is incorrect to say that Jake was influenced either by John Best or Steven Shore.
Sullivan also promotes the neurodiversity lie that there was a death threat against Ne'eman. John Best only wrote an inflammatory headline suggesting that the article be killed. He also wrote a comment stating though he was not advocating anyone go out and shoot Ari he stated that he believed that Ari Ne'eman's actions were a capital offense and that he hoped that Ari would be prosecuted, convicted and executed. I agree this statement was over the top, but it certainly did not constitute a death threat. There is little question that he did this to provoke and inflame neurodiversitites, knowing they would lie about it and help publicize his post. They played into his hands perfectly and helped publicize the post.
The article also goes on to state that Ari Ne'eman does in fact believe that autism is a disability and that Jake was mistaken when he stated that Ari was saying autism was not a disability. However, Ne'eman was on national television with the caption "There is nothing wrong with us". He was also featured in New York Magazine where the author stated that neurodiversity believed autism was not a disability, but an alternative way of existence. It seems interesting to me that whenever someone criticizes the ND movement and states they believe autism is not a disability, they always come out and show proof of how wrong we are. Janet Bain's macro which she has kept saved for months or a couple of years which she displays all the people who state on the internet that autism is a disability who have ND leanings is particularly provocative in this regard. Yet, they never bothered to correct the record as far as the good morning america show was concerned, nor what Andrew Solomon said in New York magazine or any other thing that in any way gives them any positive publicity. I wonder why that is.
An article written by Ne'eman about two and a half years ago might also give someone the idea that he does not regard autism as a disability.
We see the world in a different way than our neurotypical peers (neurotypical is a word in the autistic community meaning those of the majority neurology). This does not imply a defect, but merely a difference — one that we have just the same right to as those of a different race, nationality or religion.
The belief was that anyone society labeled "disabled" could only go so far. Sadly, these misconceptions had the potential to become self-fulfilling prophecies. When the expectation is that people of a certain type can only reach so far, they are not provided with the same challenges and opportunities that educators give mainstreamed students.
Particularly telling is Ne'eman's last paragraph:
We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not disability and someday, I hope, the world will recognize that those who think in different ways should be welcomed
One would certainly get the idea from this article that "Sullivan" apparently has not read that Ne'eman does not consider autism a disability.
Sullivan also trots out the tired canard that wanting to refute what ND says by those of us who wish we could be cured of our autism is violating human rights. Has Jake been asked by Sullivan if he is against accommodations or all the other things Sullivan alleges that Jake is opposed to? I think not.
Also, there is the absurdity of Sullivan's statement that because Jenny McCarthy gets so much exposure in the media that we already have the equal time that we so desperately covet. Though I am not sure what Jake's POV on this is, Sullivan might be surprised to find out that I believe Jenny McCarthy's point of view is also closer to Ne'eman's than is my own. They are not dissimilar in that they both offer easy quick fixes for autism. McCarthy's statement that it is all vaccines or some other known element in the environment and the fact that her son was allegedly cured of his autism means that everything is okay. Likewise, Ne'eman states that because autism is a difference and not a disability, that once societal accommodations are made, everything is okay, autistics can do just as well as anyone else. This view was reinforced in the Marino foundation's no myths video. No, I want equal time to say, that things are not going to be rosy. We need to do research on science and the genetic research that Ne'eman wants stopped, so that maybe someday small children and other children yet to be born won't have to live as cripples. I realize it is too late for me, but that does not mean we should give up the fight to find a cure and a way to prevent this tragedy. I have a very different message than Ms. McCarthy to be sure.
We can also read one of the comments to the post by some character named Robin Henley who reports she has had "run-ins" with Jake. She takes the condescending attitude towards Jake that so many ND's whose cages this young man has managed to rattle due to his age. She states that Jake should be devoting more time to his studies and having fun rather than taking on the sophisticated issues of ND versus cure or even versus the AoA agenda that Jake helps promote. Yet, Ne'eman is not much older than Jake. He is also still in college. Why isn't Ne'eman supposed to be just concentrating on studies and having fun rather than tackling on the sophisticated issues of autism self-advocacy that an immature youth such as himself takes on? Seems to me quite a double standard.
I believe I do have an interesting perspective to offer to Newsweek. I do believe that what I (or even Jake or some other pro-cure autist would have to say) would be enlightening to them and their readers and I hope that someday the opportunity is given to myself or someone equally or more deserving than yours truly.
Wednesday, June 10, 2009
One neurodiversity blogger, the autism bitch from hell in one of her posts went so far as to say that the only thing on autism speaks' agenda was developing a prenatal test with the intent of being able to abort autistic fetuses. This means that in reality the funding that AS provides to study mu wave rhythm suppression, research on functional magnetic resonance imaging studies and the other things are just a front. They are not really doing this, or somehow funding research on brain waves will ultimately result in finding a way to abort every single autistic fetus that comes along. Even more interesting is the fact that they have given nearly half a million dollars to neurodiversity ideologue Laurent Mottron. This must mean that somehow Mottron's research will lead to a prenatal test to detect autism. When I pointed out the absurdity of the post to her and pointed out that all she had to do was go to autism speaks website and see all of the studies that this organization funds where the connection between them and developing a prenatal test for autism is certainly difficult to understand, ABFH changed the wording of her post from "the only thing on their agenda" to "their ultimate goal".
Considering Palin's pro life stance, the fact that she would be part of the one in ten mothers who carried her Down's baby to term and did not abort him, you would think she would be the darling of the neurodiversity movement. They should be chanting, "The white house needs a new resident, in 2012 Palin for president". But somehow ASAN and the other organizations are silent in their endorsement of Palin.
I wonder how neurodiversitites explain Palin's involvement with autism speaks. This organization they claim has a goal of finding ways to deliberately abort autistic fetuses. Why then would a woman who solidly opposes abortion and did what ND's should love, i.e., keeping a Down's child baby would support autism speaks, the organization they hate so much? Does anyone else besides me see some irony here? Of course there is probably some explanation which eludes me. So far, when I wondered why Michelle Dawson would continue to work in the Mottron group and why she had not resigned in protest when she so clearly loathes autism speaks I have just heard the unbelievable statement from her that "science isn't politics". So I suppose ND's might have an explanation for the anti-abortion, Down's syndrome child mother, Sara Palin's involvement in this organization that they hate so much.
I suspect though that this just yet another reason to just say no to neurodiversity
Thursday, June 4, 2009
Baron-Cohen, who has researched these talents in fathers of autistic children, is now trying to do research on the mothers of the children to try to give some credence to this seemingly wacky theory he has. He wanted to use MIT as a laboratory to test these theories. Fortunately they had the good common sense to turn him down.
There are a few things I have thought of just now that i did not think about before that are pertinent to this issue. I thought I would write about them in this blog post. I have been to a variety of autism gatherings and conferences and have met many parents. It is true that a few of the fathers that I met or fathers of autistic persons that I did meet (including my own father) were either engineers or physicists. Of course these were a minority of the fathers. Others had various occupations including dentist, lawyer, physician, food service industry, fire inspector, UPS delivery man, accountant, etc. So obviously being a physicist and engineer is not a requisite to being a parent of an autistic. I have met numerous mothers as well. Not a single one of them was a physicist or an engineer or worked in a related field. Interestingly enough my own sister who is the mother of two sons is a Ph.D. computer scientist. Her husband is a Ph.D. physicist as are his brother and his father. Neither of my nephews has autism and as far as I know there is no family history of autism in my brother-in-law's family. (I realize this data is anecdotal).
I also wonder why a computer engineer would end up necessarily marrying someone who worked in the same occupation. My father, who was one of the earliest computer engineers met my mother at a party through mutual friends. My mother never worked in the IT field. My father's old boss, met his wife while they were both graduate students. His wife was pursuing a masters degree in romance languages in the humanities. One programmer my father worked with married a woman with a degree in English literature who never worked in an IT profession either.
Though the Forbes article does not go into Baron-Cohen's "geeks get lucky" theories about computer people being socially inept and only being able to meet their wife only after more women went into the profession, I believe my examples disprove this. After all, my father worked with many men who were engineers and programmers during the nascence of computers in the 1950s and 1960s. Most of them were married and apparently they had no trouble finding a spouse.
Also though MIT did not want SBC using their campus as a proving grounds, he could also look at the latest California autism report for some data. I wrote about this in a previous gadfly post He would see in looking at the growth rate of autism in the 21 California regional centers of the state department of developmental services, the San Andreas regional center, which serves the Silicon Valley, a bastion of IT workers, was 9th in growth out of 21, well behind the regional centers in the Los Angeles area with far less engineers per capita.
In my last post, I questioned why Autism speaks would give half a million dollars to someone like Laurent Mottron. Now, in the same vein, I wonder why SBC gets any funding at all. Why anyone would take this man seriously. Yet he seems to get funding for his research, peer review approval for publication in various journal articles and attention of the media. As is the case with Mottron, I guess I will have to be mystified.
Well soapbox mode off now.
Tuesday, June 2, 2009
A look at the home page of AS' web page gives their stated goals:
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism;
Looking at an old post from Harold Doherty's blog we see that it would appear that Dr. Mottron feels that one of the main goals of an organization from which he has received nearly half a million dollars is nonsensical. One wonders why he was given this money if that is the case. One wonders what many people who went on walks for autism speaks with autistic children, thinking that the dollars they raised for research would go to help finding a cure for autism would think if they knew this man received so much of their money.
AS goes further in stating some of their goals:
Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis (emphasis added). They seem to think that autism is an urgent health crisis.
What does Laurent Mottron think of autism?:
I think that autism is an example of a variation that has to be respected, first at an ethical level, but which does not have scientifically the status of a disease.
From wired magazine on Dr. Mottron:
From that day forward, he decided to challenge the disease model underlying most autism research. "I wanted to go as far as I could to show that their perception — their brains — are totally different." Not damaged. Not dysfunctional. Just different.
It would certainly appear that Dr. Mottron does not believe that autism is a global health crisis, that autism is not a disorder disease or possibly even disability but merely "a difference".
Again it seems strange to me that an organization would give someone who had such different beliefs from their own a half a million dollars or close to it. One possible explanation is that autism speaks was somehow compelled to believe that Mottron's work could have some practical applications at some point in time as we see from the description of the last paragraph that discusses his funding:
A more complete understanding of autistic individuals' strength in perception and visual reasoning may have important implications with respect to selecting and creating parenting, teaching, and workplace strategies that leverage these abilities.
If this statement is accurate then perhaps the persons who donated this money to autism speaks believing that all of the research went to finding a cure, prevention and people who like them believe autism is an urgent global health crisis might be getting some bang for the half million bucks they gave to this man. However, one wonders how the fact that at least some autistics do well on the block design subtest on the Wechsler, do well on certain other perceptual tests or memory tasks would help make parenting the child less challenging, would make it easier for a child to be taught academics and would make it easier for an autistic person to obtain and keep employment. I am very skeptical about this.
One of the problems with Mottron's research is the subject pool is limited in that they are high functioning autistics rather than lower functioning. He also uses a more proportionate amount of male autism research subjects versus females than are found in the general population of autistics. Therefore, assuming any of his work had any practical applications he would have to acknowledge these limitations. I realize, of course that this problem is not unique to Dr. Mottron but to a lot of autism research in general. Research involving EEGs and functional MRI scanning necessitate a cooperative subject who will not make movements during the study and create artifacts that would interfere with obtaining legitimate data. In Lindsay Oberman's mu wave suppression studies all the autistic subjects were high functioning males and this was likely the reason. Dr. Oberman did acknowledge the limitations of her work in the body of the study. Lower functioning autistics would likely not be compliant or be suitable research subjects for many of the autism studies that are currently funded.
Assuming the statements from Mottron and AS that his work could have these practical applications one must wonder if there is not a trade off between autistic strengths and weaknesses. For example, even if autistics do well on the block design test of the Wechsler they do poorly on the comprehension subtest. This probably reflects a lack of social skills deficit that might be the result of mirror neuron damage. This would certainly impair someone in the workplace who might throw a tantrum or tell the boss to fuck off. This would get them into trouble with peers and social relationships or with teachers and impede the ability to learn in school just as much as Mottron's potential application of the enhanced perceptional abilities could potentially enhance these abilities. Therefore rather than the research of the Mottron group being used to enhance strengths in these settings, the concomitant weakness of the autistic could in actuality produce a zero sum result.
Dr. Mottron and his sidekick Michelle Dawson are now the darlings of the neurodiversity movement for the above stated reasons. This is in spite of the fact that neurodiversity proponents have consistently maligned autism speaks claiming they are deliberately trying to find a test to abort autistic fetuses. They have urged a boycott of Lindt Chocolates and possibly other organizations that help raise money for autism speaks. However, they are not bothered by the fact that their idols are not above accepting half a million dollars from this organization they detest so much. One of the main tenets of neurodiversity is that the brain of the autistic is not damaged or defective just different. They even seem to believe that societal accommodations could solve a lot of autistics problems. However, if Mottron had even a single example of an autistic person who was able to perform as well in school as a typical child, be parented as easily as a typical child or be as competitive in employment as a typical child without curing the brain difference they would be shouting about it from the rooftops. There would be one post after another in the autism hub about it. I have yet to see these posts, ergo, one must conclude that Mottron's work has not yet yielded any practical applications. I am a cynic and will only believe it when I see it.
I emailed autism speaks, asking them why they would award such large funding to a man like this, whose goals are so clearly different from their own expressed goals; A man whose goals I must surmise are very different from people who donate money to AS and participate in their walks, the majority I would suspect have not even heard of the good Dr. Mottron. They only replied that they had a formal review process in which each researcher's proposal was viewed on its merit. One wonders what the merit is of Dr. Mottron's proposals given these statements, but I guess I will have to be mystified. I will also await and see if any of the practical applications Mottron claims his work has will come to fruition. I won't hold my breath too long though.