I AM MOVING MY BLOG
Effective immediately I am moving my blog from Jonathan's Journal to http://autismgadfly.blogspot.com/ The way the person who designed my web page set up my journal, I don't seem to have the same look of other blogspot blogs and that did bother me a little bit. Also, as some readers of my journal know, I have been taken to task by some people for the fact that I have not enabled comments on this blog. I did attempt to enable comments here, but the way it was set up I was not able to do so. I was reluctant to allow commenting because of all of the viscious personal attacks that go on in the cyberworld. I have been accused, rightfully or wrongfully, recently of engaging in such attacks myself. Lately I have done some commenting on other person's blogs so tit for tat, I have decided that I would like to have commenting. Hopefully there won't be too many nasties and attacks, but just in case I suppose me and my detractors can get out the asbestos suits and flamethrowers and go at it :) It would be easier if I could just do everything myself, but I am still unable to do web stuff. The person who did my web page and offered me free technical assistance became busy and was no longer able to do so. So, web-wise, I will have to find someone else to help me who I will have to pay or be on my own. I am no longer employed so my financial situation, though not dire, is not the very best. I am, starting February 11 going to be taking some web design courses I guess where i can learn HTML at Santa Monica College. Though it may be a pipe dream, particularly at my age, i hope that I can learn enough about html and web stuff that I will be able to do my own web page and maybe someday add a more elaborate blog that someone can directly connect to from my web page and maybe other things. In the meantime, I will have to make do with this new setup and see how it works out. I hope that I can get some readers for my current web page as well as my new blog and maybe some commenting also. I did a test for the comments on autism's gadfly and they seem to work okay there, though the way my blogspot blog was set up here, I could not enable commenting, so I guess I will be getting some comments.
Once again the new blog address is http://autismgadfly.blogspot.com
>>posted by jonathan at 1:36 PM
WHY THE DOUBLE STANDARD? DEPARTMENT
Apparently the appointment of Joyce Chung, wife of autism epidemic doubter Roy Grinker to a government agency that makes decision in autism research funding has created a hornet's nest among those who believe that vaccines or some other environmental factor has caused a real increase in prevalence in autism, sometimes referred to as an autism epidemic. They seem concerned that she will not fund their pet research projects at taxpayer expense due to some gross conflicts of interest.
On the other hand, Rick Rollens, founder of the MIND institute obtained upwards 28 million dollars in funding to found this institute almost entirely at taxpayer expense. This institute has consistently funded studies trying to do research into vaccines causing autism such as Mady Horning's mouse model studies. Also, a one million dollar study, never submitted to peer review, claiming unequivocally that there was an autism epidemic on the one hand, but also claiming that increased numbers of autistic persons entering the regional centers could be due to case finding and admitting the MIND study did not account for case finding, was funded entirely at taxpayer expense with the help of Rollens' lobbying efforts. Rollens has a clear alliance with SAFEMINDS and other organizations who are trying to prove that vaccines caused their children to be autistic and are also helping people to collect evidence in lawsuits against vaccine companies all at taxpayer expense. This is in spite of the overwhelming evidence of there being no association between vaccines and autism. I won't deal with that in this post as I have dealt with it in previous posts as well as my article "Thimerosal is there really a correlation?" in the nonfiction section of my web page. here is the link www.jonathans-stories.com/non-fiction/thimerosal.html
I am curious why the appointment of Grinker's wife represents such an impropiety yet there is nothing wrong with Rollens' blatant conflicts of interest and him pursuing his and his allies agenda all at taxpayer expense. Me thinks there is a double standard here.
>>posted by jonathan at 12:05 AM
PERSONAL ATTACKS FROM A NEURODIVERSITY PROPONENT
Canadian blogger Harold Doherty has reposted my previous post in this Journal, "Neurodiversity just say no" in a recent blog entry of his. As expected it drew the ire of at least one proponent of neurodiversity, one Robert Montgomery. Mr. Montgomery writes:
There's one serious flaw to Jonathan's argument. Not many special education opportunities were available in the 1960's. I think Jonathan needs to change his story. The majority of students with recognized disabilities, and I would presume feces smearing would have been considered a disability even in the 1960's, were in segregated institutions. The IDEA wasn't passed into law until Jonathan would have been 22 years of age. Nice try though Jonathan.This is from the Georgetown University Press:As the United States entered the 1960s, American public schools faced challenges in several areas. Discussions regarding social and economic inequality led to intense national soul-searching, with the sweeping implications of the Supreme Courtís 1954 Brown vs. Board of Education of Topeka decision affecting developments in law, politics, social policy, and certainly education. The federal government under President John F. Kennedy determined that much greater involvement on its part was necessary to stimulate action and ensure the enforcement of law, the protection of civil rights for all Americans, and the fulfillment of the promise of public schooling. Among educational professionals, questions about the rigor and direction of curriculum and instruction dominated educational discourse after the launch of the Sputnik satellite by the Soviet Union in 1957, leading to reform efforts in the teaching of most subject areas, science and mathematics. As deliberations about the appropriate purposes, character, and methodology of education intensified, special education found itself linked, directly and indirectly, to changes in the teaching of content and subject matter, the organization and structuring of schools, and the classification and categorization of students.From 1960 through 1968, special education would continue its dramatic evolution, encountering significant challenges to its assumptions, structures, and operations. It maintained its remarkable expansion in terms of its number of programs offered and students served, even while special educators constantly maintained that an unacceptably low percentage of students who needed special education services were actually receiving them. The introduction and solidification of learning disabilities as a recognized category of disability rearranged and expanded the identified population of children with disabilities; the linking of disability with poverty, cultural deprivation, and minority status substantially altered views on the etiology and diagnosis of disability, especially in the area of mental retardation, shifting the ways in which discussions of special education services and purposes were framed. The number of people with disabilities housed in residential institutions kept increasing, leading to severely overcrowded conditions and serious charges that care and treatment of the residents all too frequently was cruel and inhumane. Such developments took place in the context of rapidly expanding federal involvement as well as heated debate about the propriety of segregated schools and settings, including those for students with disabilities.Harold, really, a cursory knowledge of the disability movement in the US would have tipped you off that this man could have never spent 8 years in special education.But like John Best, your not really interested in facts and I my guess would be that this comment too will never be posted on your website. That's ok, because I'm taking screen shots of them to show the world that your a dishonest person not interested in truth.I'm sure you think your clever because you found a "house" autistic who supports your hatred of autism and autistic people who disagree with you. But sadly, like most house autistics, they lie about their past.
So, now I am a liar and a "house autistic" whatever that means though I presume it is some sort of equivalent to an uncle tom for a black person. These types of arguments are very typical of the neurodiverse proponents who take an attitude of "don't confuse me with the facts". I was in fact a special education student at Dubnoff school in the early 1960s and some other places. Even if Montgomery does not want to believe that I was really a special education student I can certainly prove his factual inaccuracies that special educati0n schools did not exist until the enactment of IDEA. All anyone has to do is go to:
This shows that Dubnoff school, a special education school in the Los Angeles area, which I attended from 1961-1964 was in fact established in 1948, disproving Montgomery's allegations that no special education schools existed prior to enactment of the IDEA.
This again shows the naivetee of those in the neurodiverse movement and their desperate attempts to stoop to personal attacks since they have no justification for the position that autism is not really a disability but just a different form of brain wiring that should be left alone due to their own inadequacies and using denial and reaction formation as psychological defense mechanisms. I doubt very much that Mr. Montgomery ever went to a special education school, knows anything about what most autistics, "house" or otherwise, have to contend with day to day.
Again, I just wish neurodiversity would quit stooping to fabrications and personal attacks and just try to discuss the facts which they claim that their opponents never use but they are so angry that they have to stoop to calling me a liar without any proof.
and if Montgomery ever reads this, he can look at Dubnoff's web page and see the factual inaccuracies of his arguments for themsevels. Nice try, Robert.
>>posted by jonathan at 11:03 AM
NEURODIVERSITY: JUST SAY NO
A number of high functioning autistics claim that there is a consensus among all autistic persons that finding a cure for autism would be a horrible thing. Autism is a part of who they are and to take away the autism is to take away the person. They go further to claim that autism is not really a disorder but just a different form of brain wiring--some call this philosophy "neurodiversity".
Some of them do acknowledge that autism is a disability. However, there is a distinction between a medical model of disability-wherein the person has a disease state and the social model of disability--the disabled person would not be at a disadvantage if society made accommdoations for them.
I am a diagnosed autistic, nonverbal, feces smearing at age 3, 8 year veteran of special education yet I do not share this view. I long for a cure for autism though a cure at age 52 is not the same as at age 3, even in the unlikely event of a cure being found in my lifetime. Somehow I got missed when they took the census. So they are incorrect about all autistics.
Is this a viable philosophy that will help autistics and their families? Is there a consensus for this philosophy among most autistic persons? Are the people who espouse this philosophy typical of autistic people in general? I would like to address these questions in this journal entry.
My problems are many. I have been fired from multiple jobs and had to retire from paid work at 51 (I am 52 now). I have never had a girlfriend. Sometimes i would make above average errors at work, though there was some discrimination as well, this does not fit in with neurodiversity's solution of accommodation. Is it morally justifiable to force a woman to have sex with me and other socially starved autistics? Is discrimination the same as sexual disinterest? These are issues that neurodiversity can't seem to reconcile. I also have problems applying myself and staying on task which has made it difficult for me to do many things I wanted to do like learn computer programming and about computers and do more writing and do requisite research for certain types of writing. It has also given me perceptual motor impairments and bad handwriting impairments. What do these things have to do with societal accommodations.
What about persons like Dov Shestack, Russell Rollens and less high profile severely autistic people who can't talk and bang their heads against walls? How will societal change stop these behaviors. Neurodiversity just claims that something should be done about it but they always seem to come up short of suggestions. What about the fact that many (though not as many as once thought perhaps) autistic persons can't speak? Facilitated communication is given as the answer in many cases. But this unproven technique, even assuming it 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.
"I am an adult, I have the right to my own body, I have a right not to be cured if there is a cure available". This might be a response from a neurodiverse person, but the problem with this is that a number of these people who preach these ideas saying that autism "is only a difference" are often on SSI or are clients of state regional centers or have other taxpayer provided services for them because they have a disability. This inconsistency is frequently reconciled by putting into force the social model of disability argument.
They have difficulty finding good autistic role models to foster their arguments, with the possible exception of someone like Temple Grandin. So, they resort to arguments claiming that Bill Gates is autistic and that if autism had been cured when Gates was a toddler he would not have been able to accomplish all of his great things. They use historical figures like Einstein and thomas jefferson and isaac Newton to claim autism is something great and should not be cured. The problems with diagnosing some of these people has been dealt with in my essay in the nonfiction part of my webpage and the interested person who happens to read this can be referred to my essay for more on the matter (shameless plug, I know). One of the persons who espouses this argument claims that autism equals genius and greatness when he himself is apparently incapable of even holding down a minimum wage job and is on the dole.
One young, angry autistic female even goes as far as claiming that persons desiring a cure for autism are responsible for the murder of Katie McCarron, a 3-year-old autistic girl who was brutally murdered by her mother when her mother could not deal with her autism and other autistic toddlers who were senselessly murdered by their parents. I do find this reasoning insulting, insinuating that I am even in an indirect manner responsible for a small autistic child's murder.
Another strawman argument is that cure and prevention are in reality code words for abortion and one offensive cartoon on the web page autistics.org implies this line of thinking. The only reason that genetic research is done on autism is the intent of deliberately finding a way of aborting autistic fetuses. Of course it would never occur to them that someone might want to find a way to delete or insert certain genes to avoid the effects of a mutation that would cause the child to have grave harm throughout their life.
Are these people typical of autistic people? Is there a consensus among persons on the autistic spectrum on this point of view. Someone can claim that they took a survey showing that 99.9% of Americans are in favor of completely overturning Roe Versus Wade, support Mike Huckabee or possibly Pat Robertson for president in 2008. The problem is the survey was taken in a small neighborhood in Biloxi Mississippi. I believe that this is analogous to claiming almost all autistics believe in neurodiversity. The internet has given a medium in which a small vocal minority can espouse their opinions and make it look like they are a much bigger group than they are. Most persons with an autism spectrum disorder have never had a web page or have expressed their opinions in the comments section of someone's blog and never will. They don't have the intellectual inclination to do such a thing. I am not trying to speak for any person with autism other than myself.
I also notice that many of them were not diagnosed until they were adults, some have married and some have kids. With one exception, none of them have, to the best of my knowledge ever been in a special education setting as I have. The one exception is someone who was able to talk as a child and then allegedly lost her speech as an adult. Some persons on another web site have even accused this person of being a fraud. Though I don't know whether or not she is a fraud, it does seem unusual for someone to be able to speak as a toddler and then lose the speech as an adult and have to use a communicator. This does raise some questions. It is between ages 18 and 36 months that an autistic person will lose their speech, not as an adolescent or in late childhood or adulthood. Another thing that comes to my attention is that a disproportinate number of them are females. It seems as many or more females than males are claiming to be autistics with a neurodiverse inclination. This is in spite of the fact that the literature on autism has consistently shown the condition to have a 4 to 1 ratio of males to females. The ratio may be as high as 10 to 1 in the higher functioning groups according to some studies. A cliched argument among allegedly autistic neurodiverse females is that autism is underdiagnosed in females. Females are not as aggressive, they are more inclined to be social than boys and can pass more easily so they are not as often diagnosed. Interestingly, this is the same argument that ivar lovaas and Tristram smith used to explain the sex ratio discrepancies in their control group versus the experimental group in the study on ABA in autism.
One of the problems with this argument is that similar ratios are found in other developmental disabilities such as dyslexia and stuttering and not just in autism. How does one explain underdiagnoses of female stutterers based on the social arguments or being able to "pass".
I am a male, lost speech at 2-1/2, regained it before age 5, special education alumnus. I believe that I am more representative of at least the vast majority of persons who preach neurodiversity as the answer and I want a cure, though I realize that it is improbable there will be one in my lifetime.
The neurodiverse are not dissimilar to Christian Missionaries who go out and try to convert lost souls. They can often reach a vulnerable audience as many persons on the spectrum have been disaffected from society. They feel worthless and have low self-esteem and neurodiversity provides a tempting escape valve. The same is true for parents of sometimes severely autistic children who want to see their offspring as something other than deficient or broken. Some of these parents themselves end up deciding they themselves are on the spectrum out of the clear blue sky well into adulthood, though sometimes diagnosed by a clinician at least allegedly. The problem is, the autism is still there, the problems are still there. They will never go away or be prevented if a neurodiverse attitude is taken. I hope that if any person touched by autism happens to read this and someone from the neurodiverse crowd gives them a homily trying to convince them of their way of thinking that they will, in the words of Nancy Reagan, just say no.
>>posted by jonathan at 11:31 AM
BILL GATES: RESPONSE TO WRONG PLANET
I have tried to join the aptly named website wrongplanet.net in order to post a response to their discussion of my essay "Undiagnosing Gates, Jefferson and Einstein". I filled out the form but for some reason I was not emailed the link, so i am not sure that I will ever be able to respond on their web page or not but I will work on it and post some of my stuff here.
Some of my detractors who have read my essay are discussing it and making rather negative comments. Though anyone who disagrees with my essay and believes Bill Gates to be on the spectrum is certainly entitled to their opinion I feel the need to address the numerous not only erroneus arguments trying to prove Gates has an ASD but the many factual inaccuracies that people posting on this web page have presented.
One person claimed that because I talk about Einstein's lack of regression when this often takes place in autism have claimed that I am confusing autism with Child Disintegrative Disorder and that regression never occurs in autism. This is clearly a fallacy. Though there are some similarities to autism and CDD, the onset of CDD is usually much later in life than autism and can occur as late as age 10. The prognosis for CDD is also much worse than that of all but the most severe autisms. Regression clearly takes place in autism and this is where the speculation among some parents comes in that MMR and thimerosal vaccines cause autism because of the temporal relationship between their child achieving all of the developmental milestones and then losing them. This has happened to me (having speech then losing it) also to Noah Greenfeld as well as many other autistics. There would be no reports of these temporal changes happening from parents at the time of their child's vaccination if autism were never a regressive disorder and only CDD.
Someone else tried to refute my arguments about the possibility of Gates having Jactatio Capitus rather than autism as an explaination for his rocking by claiming that Gates would not get tired as a toddler and that he rocked as a toddler. Assuming he did rock as a toddler (I don't know if he did or not) then Jactatio capitus could have had its onset then and toddlers can certainly get tired.
As far as the journalist claiming to have definitive proof of Gates ASD and then refusing to back it up someone else there claimed that perhaps Gates did not want people to know about his autism and stepped in and prevented it from being published. This is so ridiculous it does not even warrant a comment. Why would Gates even care if people knew he had an ASD. They also said that Gates never denied it and this might constitute proof. Perhaps Gates has better things to do with his time than to settle an argument with neurodiversity people who are not only not licensed physicians or psychologists qualified to make a diagnosis but have never even met Gates or seen him in person so would have no way of being able to diagnose him, but only feel a need to do this to make them feel better about themselves or to provide this as an argument against curing autism because they are too bankrupt in having any decent argument about not curing autism as they dislike themselves so much and need to use reaction formation and denial as psychologic defense mechanisms.
Someone else claimed that his choice of Melinda French as his spouse was due to his going out and screening various women at Microsoft in order to find the optimal wife and the fact Gates did not chose a trophy wife or someone much more attractive than Ms. French shows somehow that he is on the spectrum. First of all, Gates did not screen women at microsoft but met his future wife at a Microsoft picnic. It would make sense that Gates would marry someone compatible with himself as they had an interest in microsoft and more generally the computer field in common. Aside from the old cliche that beauty is in the eye of the beholder and one man's homely bitch can be another's matinee idol joy. This certainly does not indicate Gates being on the spectrum.
Other evidence offered was that Gates is divesting his fortune to charity and that no neurotypical megawealthy person would do this. This is so typical of the self-serving neurodiverse people who will do anything to make autism look good and provide an argument against curing it. John Rockfeller, Henry Ford, John Paul Getty, Sam Walton, Baron Hilton have also set up foundations for helping the poor and divested their wealth. They must have Asperger's also.
Also, someone wondered why I would be so embittered about my lack of success claiming that I had published short stories and a novel. I have never had a single story published a single short story except on my web page. My novel was rejected by 10 literary agents. The book doctor's I consulted with pronounced my novel DOA and said I would have to start over again from scratch. This is certainly not an example of my being successful.
Hopefully I will have an opportunity to post this on wrong planet but i can't seem to get access to the site, so i guess i have to settle for posting it here for now
>>posted by jonathan at 10:33 PM
THE POT IS CALLING THE KETTLE BLACK DEPARTMENT
I am still reading the Age of Autism web page and I see that one of my favorite pots, Mark Blaxill, is once again calling those Kettles, the pharmaceutical industry and the government (most specifically the CDC) black. He seems to think there is something wrong with the CDC promoting vaccines that help save lives and that for some reason they are in bed with the pharmaceutical industry and helping to cover up data that would show that thimerosal in vaccines cause autism. He also points out the fact that the people who authored some studies in Denmark exonerating thimerosal were involved with the serum statens institute in Denmark which is the sole manufacturer of vaccines. Blaxill conveniently ignores the fact that the company is a natinoalized non-profit company controlled by the Danish government and the conmpany is immune to lawsuits under Danish law.
However, he does not seem to think that anything is wrong with the fact that he is compiling data for his friends Lynn Redwood and others who are currently involved in litigation against vaccine companies for allegedly making their kids autistic and the statistical analyses that he is engaging in and his writings will be used as evidence in these lawsuits. His answer is that he himself is not litigating against vaccine companies but does not matter if his friends are and what interest (financial or otherwise) he himself may have in the outcome.
He sees no problem in SAFEMINDS funding Mady Horning's rain mouse studies and trying to use these as evidence in IOM hearings and that this funding represents a huge conflict of interest on his part.
Also, the sole linchpin in Blaxill's argument that changing diagnostic practices had nothing to do with increasing autism prevalence is the MIND institute's 5-year-old study. He has no problem with the fact that the funding for this study was lobbied for in Sacramento by his good friend Rick Rollens who is also allied with SAFEMINDS and is also claiming that vaccines are responsible for an autism epidemic.
There is also a question of what Blaxill's involvement was in writing the 2002 update to the california reports which was published by the state regional center. In an e-mail correspondence Blaxill told me that he wrote the prevalence figures for this report. It galled me that he lives outside of california, pays no taxes in a state which at one time i paid taxes to and he would be involved in these things. However, about four years ago I contacted Ron Huff, the senior psychologist at the state regional center and the main author of the two California reports and he denied that Blaxill had any direct involvement in writing any part of the report. He only inquired with the state regional center to collect data to add fodder to his hypothesis showing a link between autism and mercury. So I guess I will never know the truth behind that one. An interesting side note is that the California data which gave autism prevalences per 10,000 by birth year would only seem to refute Blaxill's hypothesis rather than strengthen it. in birth year 1970, the prevalence was 4/10,000 this shot up to about 8/10,000 in people born in 1986 and about 12/10,000 in people born in 1990. The only thimerosal containing vaccine that was used prior to 1991 in California was the DTP vaccination. Both Mark Geier and Sallie Bernard claimed the explaination for this was increased uptake of the vaccination during those time periods, yet their assertions are contradicted by data from the CDC and California State Board of Health who have data showing that if anything DTP administration decreased during this time period. Also, if they want to cry government conspiracy, their typical argument, they would have to show data that suggests that along with the increase in autism that there was a corresponding decrease in pertussis which would have to have been of a much greater magnitude than the autism increase. Mark Blaxill asks where is the hidden horde of autistic adults. I would like to ask him. where is the hidden horde of all those who had whopping cough during the early 1970s if DTP administration was so low. They don't seem to be showing up in any of the state health records that i have tried to locate on the internet.
Blaxill reminds me of the old saying in the new testatment of let he who is without sin cast the first stone. I don't think Blaxill qualifies.
OTHER BITS OF TRIVIA AND MINITUAE
Also on the age of autism blog, there is some stuff about Donald Trump claiming that he believes that vaccinations cause autism and that he and his much younger wife are delaying getting their child vaccinated or are not adhering to the regular vaccine schedule because of fear that their offspring will become autistic. The real irony in all of this is that Trump had another child very late in life (though I don't know his exact age) and while there is no scientific evidence that vaccines cause autism, there has been research done by geneticist Jonathan Sebat as well as research that has come out of Israel showing a relationship between paternal age and increased likelihood of having an autistic offspring. Wouldn't that be a bitter irony if Trump's son or daughter became autistic because their father was having a child at an age which was biologically unnatural.
I am still working on my nonfiction book off and on, but while i was in the process of writing it, I did a typical Jonathan and forgot to document references which is always a good idea to do in an academic book about autism, so not sure what the future of that is. I also just barely started another novel in spite of the failure to get anywhere with "The School of Hard Knocks" (my only novel that i have written so far). It is about an autistic poker player, unlucky at cards and even unluckier at love who undergoes a dramatic change which makes him a poker star. It is a longer version of the latest short story that I have written. The character was first introduced in a short story that I wrote called "The Conversion" about an autistic man so fed up with his lack of popularity with women that he seeks out a church that claims to convert homosexuals into straights. He begs the church's paster to make him gay. If I ever go further with this novel I plan to incorporate the story into the novel. I cannabalized my first short story "The Session" (which is not on this web page) and "Mr. Twiddle" (which is on this web page) into my novel. I used to have a link to "The Conversion" on the short story section of my web page but the link got broken somehow. I am not sure how, but maybe someday I will figure out a way to restore it. Not sure how far I will go with it, it may go nowhere like most of my projects. Of course, I am still posting things on this blog once in a while and that may be the extent of my writing and although this blog is published I probably won't get many readers ever but whoever may happen to read this particularl entry, I thank you in advance for taking time to read my stuff.
>>posted by jonathan at 10:23 AM
I was reading the age of autism web page earlier today-the site made by all of the thimerosal causes autism people-and I noticed a post about a recent article in the New York times about the difficulties of qualifying for SSDI and the query of what would be done about all of the tons of autistics produced by the autism epidemic when they were adults and they have to apply for social security benefits. I find this interesting because as far as I can tell SAFEMINDS, generation rescue and those other organizations were all claiming that autism was just another name for mercury poisoning and chelation was a universal autism cure and if the child's autism were detected early enough the autism could be completely eliminated. I realize that was actually the case in that one boy who was chelated to death, but that is really besides the point. Also, ABA practitioners are claiming that there is a 50/50 chance of complete normalcy for an autistic person with their form of early intervention. There have even been some cost-benefit analyses done with ABA showing that the cost of ABA is far lower than the cost of living a life on the dole for an autistic person, so this is the justification for doing behavioral therapy. So it seems strange that this post of dread would be appearing on Age of Autism's website. According to their own logic they should not be worried at all about what will happen to all of these future autistic adults since they won't need social security benefits since they will all be cured by chelation and ABA.
After nearly 28 years of struggle trying to make a living (with some degree of success but unfortunately not enough) I have had to give up the ghost and I applied for SSDI. I was one of those people that the New York Times article talked about who were turned down. I am now appealing the social security administration's decision but I am not sure how promising that is.
The building I went to for filing the application for SSDI which houses the office of the social security administration that is closest to my home is in West L.A. on Olympic Blvd. What came as a shock (no pun intended for those who remember lovaas' old ways) to me was that down the hall from the social security office on the same floor are the offices for the Lovaas Institute for Early Intervention!! This has to be one of the greatest ironies in the history of mankind. I can't help but think that this is not a coincidence. That maybe Lovaas and his cronies intentionally rented an office in this building just to taunt me and other failed autistic adults who never received his treatment or received his treatment but ended up having to apply for SSI or SSDI anyhow. He and his pals might know that while they are going out claiming that their treatment is the salvation from the fate which has now befallen me and others, we will notice that his office is just down the hall. Perhaps the Lovaas Institute is really not preventing anyone from being forced to apply for social security benefits and they are just getting a good laugh out our expense. Another explaination is that there really is a God and that he has an extremely warped sense of humor.
I suppose I am being irrational and it really is just a coincidence but I really can't help wondering. I may or may not keep the very few readers of this journal updated about what happens with my appeal or whether or not I will ever work again. From age 24 to age 51, I did work a lot more than I did not in spite of all the problems and I am proud of that fact, though what I had to go through was utter hell.
I did put more than $40,000 into social security which I need now and am being denied before it was finally evident that enough is enough. I wonder how much money Mark Blaxill's daughter and Sallie Bernard's and Lynn Redwood's and Lisa Ackerman's sons will put into social security after chelation and whatever other treatments that Blaxill and company at SAFE MINDS thinks will be devised for them by proving there is a real autism epidemic that was caused by mercury poisoning. I wonder how much money Kristina Chew's son will put into social security after his ABA treatment is over. I wonder if Harold Daugherty's (sp??) son will be a canadian taxpayer as an adult after the autismrealitynb treatment of ABA is applied to him. Only time will tell.
>>posted by jonathan at 12:27 PM
Well, recently I finished reading the book Severe Autism Support Denied by Leonard Jayson and my e-mail pen pal, Marla Comm. The book is about Marla's life as an autistic woman in Montreal Canada and all of the hardships that she has to endure because of her autism.
The Theme of this book is in stark contrast to the more upbeat stories from people like Jenny McCarthy and Christina Adams and Catherine Maurice and others that I wrote about in my previous journal entry. It shows the negative side of autism, even in those who are college educated and by many standards high functioning.
Marla lives in Montreal Canada, got a bachelors degree in Math and has a small part-time job as a library assistant. She is too impaired to take care of household chores and other matters and needs support in these areas which she cannot get. Montreal is a very bad environment for her due to the cold weather and the political situation there. Marla is English speaking and because of her disability was unable to learn French. The French who dominate Montreal are trying to suceed from Canada and do not like the English, especially those who speak no French. This is sort of like living in a foreign country and makes Marla isolated and her life difficult. I read about Marla in the MAAP newsletter and started corresponding with her some years ago and we have continued this correspondence via email. Marla has very little money and sometimes has to eat junk food to survive. She also suffers from some of the motor coordination problems that I suffer from so I was very interested to read about that. Marla suffers from severe global burnout after years of struggling in the unsuitable setting of Montreal without any supports.
The book has some technical deficiencies as Jayson is not a professional author butsomeone who penpalled with Marla as did I and some other people. Marla is not a professional author either and suffers from ADHD as a condition co-morbid with her autism and therefore has organizational problems. Because of this when Jayson asked her to proof his writing for organizational problems Marla said she could not find any. There are numerous repetitions in the book and the way some of the information is presented is disorganized. In spite of this I enjoyed reading this as the negative side of autism hits home with me.
Unfortunately, this is the type of book, along with David Miedzianik's stuff and the more negative things that I wrote will not go very far and will be censored by the powers that be. Marla's story is a story that needs to be told. However, people really want to hear success stories and hear that their kids will grow up to be another temple grandin or stephen shore. Not a David Miedzianik, Marla Comm or Jonathan Mitchell.
If you happen to read this journal entry and you are interested in reading some of the negativities and hardships that a person with autism has to endure, I recommend you order the book from amazon.
>>posted by jonathan at 9:02 AM
I recently finished reading Jenny McCarthy's book about her autistic son, Louder than words. It is a rather provocative title. Jenny McCarthy, as most know, is a celebrity, so her book is going to get a lot of publicity. I still remember watching Jenny on MTV's singled out, 11 years ago.
The book is rather superficial and a cliche in that it tells the same familiar story of a mother going through the angst of autism and her child being recovered through ABA, GCFC, chelation, etc. This is a similar theme to books like Catherine Maurice's Let Me Hear Your Voice or Christina Adams' a real boy.
McCarthy's son is now 5 years old. The problem is these parents end their cliched stories prematurely. How do you know how well a 5 year old is going to do, will he perfrom well in the higher grades in school, will he be socially adroit as an adolescent, including having girlfriends or will he be a social outcast? Will he be able to hold down a job? None of these questions are answered nor can they be answered until the boy is older. We will have to see if people like Adams and McCarthy write sequels to their books in 20 years from now. Will they be able to tell such a glowing success story?
I am reminded of my own case of having substantially coming out of my autism between ages 2-1/2 to 5, going from being very severely autistic to regaining my speech and being considered substantially recovered. The intervention of choice that I went through in the late 1950's was psychoanalysis. My psychoanalyst supposedly studied under Anna Freud (Sigmund's daughter) in England. She took full credit for my recovery stating that she was the one who taught me how to talk. I wonder considering what the visceral reaction is from most people interested in autism who hear the words "Bettleheim" or "Refrigerator mother" if they would ascribe my recovery to psychoanalysis.
By the time I was 5 my parents probably had high hopes. Those hopes did not spring eternal. I was not able to do well enough in school to get a meaningful career. After years of struggle and being fired from jobs I am going to have to give up the ghost and retire at age 52. I have never had a girlfriend, I still have bad self-stimulatory behaviors, and still can't get it together to do too much, except for writing in a blog like this.
Now that the IDEA has given the green light for the commercialization of ABA in spite of the lack of adult outcomes, and the blaming of increasing prevalence on mercury, though no temporal relationship exists, will encourage parents to do chelation as a treatment. This problem will be worse as McCarthy's book is brought to the forefront. The fact that McCarthy's celebrity will be able to help their cause so much is a wet dream for all of these ABA practiotioners, special educators and chelators.
McCarthy in her book talks about her search for answers for her son and, as she puts it, acquiring a Ph.D. in google. She talks about how she finds all of these treatments on google. She also talks about the seriously flawed Geier study showing a relationship between drops in autism prevalence in california coinciding with removal of thimerosal from vaccines. I doubt McCarthy would even bother to look at regional center data showing the prevalence rates of autistics between the ages of 3 and 5 is higher than ever in spite of thimerosal largely being removed from vaccines.
I still remember one of my favorite and now out-of-print autism books "A Child Called Noah" by Josh Greenfeld published in the early 1970s. The book describes the angst of having a severely autistic child, Greenfeld's personal experiences with Ivar Lovaas, and Lovaas' failed attempts to restore Noah to normalcy and make him indistinguishable from his neurotypical peers. I wonder if a book with such negative overtones could be published today. I doubt it.
I anxiously await Adams sequel "A Real Man" when her son is 25 years old or older. Also I hope McCarthy will write a sequel to her son's story when he is an adult.
>>posted by jonathan at 8:01 AM
Well my new essay on autism genetics and whether or not my suffering is necessary for society was published on exceptional parents' magazine's web page and is generating some buzz within the autism community. I sent it to my acquaintence, Matthew Belmonte, an autism scientist who was once a graduate student of eric courchesne for whom I was a research subject in some brain MRI scanning studies at one time. He liked my essay and with my consent submitted it to a variety of people. Portia Iversen, who founded cure autism now with her husband, Jon Shestack, says she is going to link to it from her blog and publish it on some other places on her web page. Matthew also sent it out to a number of other people. Michelle Dawson, author of the essay the misbehavior of behaviorists and someone who is part of the neurodiversity movement was sent my essay and even though she was not asked to comment on it, ended up commenting on it and questioning the opposition Matthew and I have to the neurodiversity movement. My essay added fuel to the fire of the ongoing debate between Matthew and Michelle who presented the diametrically opposed views of those who wish to cure autism and some others who feel it is wrong to claim that autistic lives can only be worthwhile if they are cured and no longer autistic. I was also told that Simon Baron Cohen was sent my essay (I think also by matthew) and read it and wrote some sort of response to it, which I guess was exchanged in private email with some parties and I have not read his response.
I am glad that SBC got to read my essay and find out my opinion of him claiming that high functioning autism should not be considered a disability and his flawed speculation that autism has stayed within the population rather than dying out because the genes for autism produce some sort of evolutionary advantage. I think i would be considered high functioning by most standards, yet i wanted to go to graduate school, possibly get married (though sometimes i wonder), and write and publish books. My problems prevented me from accomplishing any of those lofty goals. SBC was able to accomplish all of these. I wonder how he would feel if he had an autism spectrum disorder and he had never been able to marry his wife, go to graduate school and become an autism researcher, write and publish The Essential Difference and other books because of this. I bet he would then consider it a disability and therefore I really resent his not considering autism a disability and how dare he say, that I don'thave a disability or that I am not high functioning enough to be considered part of the group that is not intrinsically disabled from autism, which means he is writing about the somewhat arbitrary label of high functioning autism and just applying it to very few people trivializing the difficulties of those of the lower end. I guess he was smart enough to read between the lines of my article, in which i mentioned him and criticized his speculations and responded in some way. I will probably never get to read his response.
I also discussed Temple Grandin in the article, who has also postulated theories similar (or if anything even more extreme) to baron cohen and leveled the same subtle, or maybe not so subtle criticisms of her as well. Though i don't know if Temple will ever read my essay or respond to it.
>>posted by jonathan at 1:27 PM
just in case anyone is interested and happens to read this (i know i get a few readers of this journal from time to time) I attempted to enable comments on this journal, but i was not able to do it successfully. I think this journal was made with a template from my own website instead of a stand-alone blog the way blogger does so this is why i am unable to enable comments. I contacted the person who designed my web page and he said that he would look into it and get back to me in a couple of days. Someone recently signed my guestbook, talking about my lack of comments and criticizing me for not having them open and responding to my recent entry concerning my desire to avoid acromonious arguments as one reason why I might be hesitant to have people comment on my journal entries. Of course, they were not the recepient of the ton of abuse i got when i used to post in autism groups on usenet and the snowball effect of having a debate over the internet used to generate and how nasty a lot of these overly sensitive people could be.
I am still not sure if i want comments on my blog or not, but i would like to have that option, so i am working on it and I may have some journal entries where people can comment at some point, and if and when my web designer gets back to me i will keep anyone who cares among the very few that read this journal posted.
>>posted by jonathan at 10:55 PM
Well i sort of had a scare for a bit. I last posted in my journal that exceptional parent was going to publish my article in their editorial section. I looked at their editorial section and did not see the article. I inquired with the editor and it turned out they had published it and i had just looked at the wrong place. well here is the link to the article in case anyone who happens to read this journal is interested:
>>posted by jonathan at 1:46 PM
Well it looks like exceptional parent magazine is going to publish my latest nonfiction piece on their web page. They will also mention the piece in the magazine directing people to the web site. I think it will be on their website from the months of july august 2007 and will be mentioned in the july issue of their magazine. The article deals with what I posted a couple of journal entries ago about whether or not the autism genes that produce so much suffering are really necessary for the betterment of society. I fairly happy about this but a little disappointed it could not get in the magazine itself, but this is still pretty good i reckon and might be the start of something bigger, well we shall see what happens.
>>posted by jonathan at 8:50 AM
Someone calling themselves Moggy recently attacked me on his blog, claiming that I was lying and fabricating things about the neurodiversity movement. http://moggymania.blogspot.com Natrually this person just attacked me personally and presented no facts as to what I was incorrect or lying about which is pretty typical of these neurodiversity people. One thing I wanted to address was the fact was his statement that I don't allow comments to my journal postings. Actually it is not that I don't allow comments but the person who designed my web page either did not put this feature in or that I don't know how to use it. Actually, I really don't want to have people commenting directly as whenever I posted things on places like the usenet news groups I was the victim of verbal abuse by all of these angry Neurodiversity people. Moggy commented that I have email but for some reason that I don't understand it was more difficult for him (or her) to send me e-mail than to comment directly on my articles. Another option for Moggy or anyone else who wants to comment is to sign my guest book and I have had a few people do that commenting on my posts here. But my journal is not really for engaging in an acrimonius debate the way some other blogs do.
Actually though moggy's comments made me a bit angry, I was glad that he gave me some publicity but not many people read my stuff anyhow.
I just wish if the neurodiversity crowd really wanted to engage in a dialogue with me that they would not stoop to name calling and personal attacks and just discuss facts that justify their position. I realize that is hard for them to do as their position is really quite difficult to justify
>>posted by jonathan at 9:35 AM
Temple Grandin and Simon Baron Cohen and perhaps others have stated that the genes that produce autism are necessary for civilization. Grandin has even gone so far as to say we would be a bunch of cavemen if these genes did not exist. It is interesting that so many different genes have been associated with this phenotype. Autism has been found associated with fragile x mutation, Rett syndrome which is a mutation of a gene on the x chromosome. It is also transmitted by autosomal dominance in conditions such as tuberous sclerosis. There have been genes found in association with autism on chromosomes 15, 7 and 22. Due to the fact that the recurrence in siblings is usually 3 to 6% it seems likely that the majority (although not all) types of autism are transmitted via many genes and not simple Mendelian inheritance with either one autosomal recessive or dominant gene. I wonder why would so many genes be absolutely necessary to society. They also state that the reason that autism has stayed in the population in spite of the fact so few people with the condition reproduce is that the genes provide some sort of evolutionary advantage. Spontaneous mutations, however, provide a much more plausible explaination for all of this. Recent studies done in Israel-showing a relationship between increasing paternal age and having an autistic child would seem to bear out this contention. I have been told that my suffering due to an autistic spectrum disorder, i.e. difficulty holding down jobs, perceptual motor deficits, lack of friends and romantic relationships etc. is necessary for the betterment of society. We would not have computers, cell phones or cars if it were not for autism genes. We would not have been able to send men to the moon. Grandin, in fact, calls NASA the largest sheltered workshop in the world. But there is no evidence for these contentions based on the above mentioned arguments. I believe research in genetics is one of the more promising avenues to pursue in autism and I don't believe that elimination or control of some of these genes would produce the effects grandin and baron cohen claim. As far as there being more engineers in the parents of autistic children than in the general population baron cohen and others are assuming correlation means causation. I think it is possible that autism occurs more frequently in certain ethnic groups, due to large inbreeding such as jews and Asians who would be more likely to enter engineering related professions than an anglo, black or Hispanic or native american. This only means correlation not causation at the risk of being repetitive.
Hopefully research in genetics will go on and people who preach that doing autism research leads to some sort of eugenics will not be taken seriously
>>posted by jonathan at 9:21 AM
Today I was in Border's checking out the much ballyhooed Einstein Biography by Walter Isaacson that just came out. I was curious as to how much time he would devote to Einsten's alleged speech delay as a child and whether or not he would touch upon the fact that some persons think that Einstein is autistic. I was not disappointed. Not only did he talk about the speech delay, he also talked about the fact that some persons thought that because of this speech delay, Einstein may have had a developmental disability such as autism. There was an endnote at the end of this section. I looked at the end note and sure enough he was quoting both Simon Baron Cohen and Norm Ledgin who have postulated about Einstein being on the spectrum. I was quite pleased by the fact that Isaacson stated that based on Einstein's facility with communication and his numerous social liaisons as a teenager that he did not agree with all of the people who posthumously diagnosed Einstein and did not feel he was ever autistic. I feel somewhat vindicated. I can just imagine how people would be shouting about it from the rooftops if in fact he had stated that he believed Einstein had autism. Isaacson said essentially some very similar things to what I said in my essay on undiagnosing Einstein, Gates and Jefferson written at least two years before the publication of the biography.
>>posted by jonathan at 8:34 PM
I have decided to post a new topic of interest. One of the interesting things about the autism cure debate is that it reminds of the writings of sigmund Freud. As many people know there are a number of mildly autistic people who have expressed opposition to a cure for autism stating that they are happy about the way they are. They often say abusive things about CAN (cure autism now) and other organizations and people who want a cure for autism. They claim that autism is who they are and a cure would destroy their identity and would be akin to a death sentence. As a person with mild autism, who would like a cure for autism, I have always wondered why people would feel this way and now I feel that I may have an answer after considerable thought (though actually this is something i wrote about in one of the chapters of my unpublished nonfiction book some time ago). Sigmund Freud wrote about psychological defense mechanisms, i.e. psychologic actions that people take to alleviate psychological distress. One of the defense mechanisms that Freud wrote about was reaction formation. This is an instance where if someone has an emotion or feeling that they can't deal with they adopt exactly the opposite feeling. For example, people who are turned on by pornagraphy and feel embarassed by it, might end up engaging in anti-pornagraphy crusades and travel to rallies and things like that and vehemently speak out against pornagraphy. It also causes kidnap victims to sometimes embrace their kidnappers in the case of patty hearst. I think it is very possible that many of these anticurebie neurodiversity persons are actually engaging in reaction formation as a psychologic defenese mechanism. They hate their autism and all of the problems that it creates for them. It is a horrible emotion that they cannot deal with, so they take the attitude that their autism is great and does not need to be cured and taht people who want a cure to do bad things. It causes one person to claim that when autistic children are murdered by crazy parents that people who wanta cure are responsible for this. It causes one person to claim taht autism equals genius and greatness. It may be why people claim that Einstein, Jefferson and Gates are autistic, though i did not mention that possibility in my essay. This, I believe, is a very possible explaination for the neurodiversity movement reaction formation.
>>posted by jonathan at 1:53 PM
well i see that my "friends" from the anticurebie and neurodiversity movement are at it again. The latest is they are sending a petition to the NIH trying to state what sort of research in autism should be funded. Even more ridiculous is that some of the people signing this petition live in England and canada and have never paid any U.S. tax dollars yet they feel they have the right to suggest how my tax dollars should be spent in a country where they don't pay any taxes. They of course are against research designed to find a cure or see autism as any sort of pathology. Instead they suggest, doing research that will determine autistic strengths versus weaknesses and how a person can best function as an autistic individual. One of the problems with this is that different people diagnosed as autistic have different strengths and weaknesses and there is no one autism strength or weakness. Stephen Wiltshire is one example of this. He is a genius at drawing, yet because of my fine motor and perceptual motor problems i am severly retarded in this area i can't draw at all and have a serious handwriting impairment and can't put together puzzles. Yet Stephen Wiltshire functions intellectually at the retarded level and can't read as I can, and needs assistance to take a bus or cross the street problems, i don't have, so in terms of strengths and weaknesses we have nothing in common. The common denominator between us is that we are both disabled in one way or another and that impairs are quality of life. There is no way that science can somehow get around this and not look at our conditions as a pathology and do research with the intent of restoring people like us to normal health (my dictationary's definition of a cure) or prevent others from having a genetic mutation that would cause such disabilities. I think Michelle Dawson and her mentor Laurent Mottron have published a paper showing that autistics have extraordinary ability on the block design test on the Wechsler. I score in the retarded range in this subtest with a diagnosis of autism. Even assuming all autistics had an extraordinary ability at block design, how is this going to help them behave in an appropriate manner, get a job, or find a spouse? It won't. What sort of research could be done that would enable someone like me to find a girlfriend, be able to make a decent living or have good fine motor coordination? They seem to be short of suggestions, the petition has no substance, completely superficial. Of course there are some people in this movement who seem to think that research is done so scientists can pay their mortgages and amuse themselves. The reality is that scientific research is done with the goal of finding a cure whether these people like it or not. That is why research is funded by both the public and private sectors I wonder why people in England and canada can't just make petitions in the countries that they live in instead of trying to dictate how my american taxdollar is spent. Hopefully the NIH won't take these people seriously and will just place their petition in the circular file, i.e. wastebasket. No one likes to see themselves as defective. There is the old saw that the truth shall set yee free, but it can also piss you off!
>>posted by jonathan at 4:14 PM
I was very interested to read the article in the L.A. times today about the death of President Gerald Ford. One of the things that the article did not mention and one of the things that Jerry Ford will probably not be remembered for was that it was during his administration that the Individuals with Disabilities Education Act (called at the time the Education for Handicapped Act) was signed into law. Ford signed it into law while aboard Air Force One in November of 1975. In spite of the fact that he signed it into law it seemed pretty apparent that he was vehemently opposed to the law. It is likely that the only reason that he signed IDEA into law was that he realized that Jimmy Carter (or whichever democrat would be running against him in '76) would have made this a campaign issue had he vetoed the bill that would eventually become the IDEA. Here is the following quote from Jerry Ford: "Unfortunately this bill contains more than the federal government can deliver, and its good intentions could be thwarted by the many unwise provisions it contains. Even the strongest supporters of this measure know that they are falsey raising the hopes of the groups affected." More than 30 years ago Mr. Ford never could have realized how prescient he was!!
>>posted by jonathan at 9:37 AM
Another thing that i would like to post that i should have posted over a week ago--I finished a first draft of my nonfiction book! it is shorter than my novel-not a very long book, but still long enough to be a book. It is 10 chapters and one of the ten chapters is my piece on undiagnosing Bill Gates, Albert Einstein and Thomas Jefferson in which I attempt to debunk the notion put forth by various people that these individuals are or were on the autistic spectrum. It is on my web page in the nonfiction section and the interested reader can read it there. It may never be publishable and end up like my novel and i don't know when I will ever get around to rewriting it. I have started doing some editing of the first 25 pages of the hard copy. Still I can't help feeling a tinge of pride over it. It is another accomplishment. Basically i have now written three books if my collection of short stories (enough for a small book length collection) counts as a book
>>posted by jonathan at 6:08 AM
On saturday i went to an AGUA (Adult Gathering United Autistic) meeting. This is the social group for autistic adults of which I am one of the original founding members. A movie, Mozart and the Whale, will be coming out that was inspired by some of the true events that happened at this group. Anyway, I saw one of the persons I knew at the meeting whom I had not seen in a long time. He was not able to come to the meetings (usually held on saturdays, though sometimes on Sundays) because he had a job working at Home Depot. He was very unhappy because he had been fired from his job after nearly a year and a half of employment there. He had a new supervisor who claimed that he was breaking company policy and was insubordinate and apparently had come down on him hard for allegedly breaking certain rules. Though I don't know all of the details I suspect that he lost his job as he has a very loud voice and makes funny movements and the boss did not like that and needed an excuse to get rid of him. This has happened tome also. It really hits home and It reminds me of the simplistic solution of disclosure, i.e. if you tell the employer or the prospective employer about your disability that will solve everything. it doesn't. The employer is not going to be more sympathetic just because you tell them about your disability contrary to popular belief. I am also reading the autism natural variation blog by this guy named Joseph, who claims the costs of autism to the taxpayers is grossly exaggerated and he comes out with this figure apparently conjured out of thin air that 70% of autistics will be able to be employed. It is wrong to encourage disclosure and it is wrong to claim such pie and the sky things. I suspect Joseph has good intentions but he probably has lead an ivory tower existence and has just met whom I call "the skewed auties", i.e. people claiming to be autistic who log on the internet and claim that the speak and are representative of all autistics in that they all believe autism should not be cured and is merely a difference in brain wiring and not a disability. I suspect Joseph has not met many autistic adults outside of the internet and is not aware of the problems we face in the workplace. Just my $.02
>>posted by jonathan at 8:13 AM
well was not sure I was going to post anything for a bit but something new has come up. This was reported in today's 11/17/2006 L.A. Times Another case were apparently the parents of a severely autistic boy had cries for toasted snow that resulted in drastic actions. This took place in Orange County about 50 miles south of Los Angeles where i live. These parents allegedly were coerced into giving very expensive gifts to some special educators in exchange for the best special ed services the school district could offer. The gifts included diamond jewelry, chanel perfume, $800 dinner at four seasons hotel, a furnished condominium purchased by the boy's parents in which a special educator and her husband lived for a year rent free and then apparently took the furniture with them when they moved out. There were allegedly demands placed on the parents by the special educators for more and more gifts. The educators deny that any demands were placed on the parents. The parents may have some documentation, thank you notes from the teachers. The Orange County superindendent of schools states that teachers are not allowed to except gifts from parents of students more expensive than flowers or candy or things like that and they are investigating the parents claim. The parents have also retained services of an attorney to litigate against the school district. There is the old story of an Apple for the teacher from my youth but these are some expensive apples. The boy was severely autistic and rejected by about 15 private special ed schools for admission. The gifts finally stopped when the parents confided to a friend who guided them to an attorney. I hope that this thing won't go away and maybe it will tarnish special ed's reputation, and the special ed personnel involved if guilty of any wrongdoing will have the book thrown at them but somehow i doubt any of these things will happen.
>>posted by jonathan at 9:20 AM
another topic that I have been thinking about lately is the research done showing older fathers giving birth to autistic children. This apparently creates mutations in other types of genetic disorders, e.g. Ehler's-Danlos syndrome according to some of the medical reports that I have typed. I also think about how both Temple Grandin and Simon Baron-Cohen (guess his cousin Sascha is getting pretty famous) both claim that autism is not such a bad thing and that there are genes that predispose an individual to autism must serve some sort of evolutionary purpose, otherwise autism would not have stayed within the general population. They have both reasoned in their writings that if autism were all bad, it would have died out in the general population since autistic people usually don't have kids. I think both Temple and SBC are rather confused about the most rudimentary concepts of genetics. The recently published research on older father's giving birth the autistic children sort of refutes what they are saying. It is one of the things that shows that autism is likely staying in the population because of spontaneous mutations (also called de novo mutations because they are new) rather than because autistic genes provide any sort of evolutionary advantage. Again, my dysfunction is trivialized by these individuals and baron-Cohen even writes an essay about high functioning autism not even being a disability because of this supposed evolutionary advantage that is proven because autism has not gone out of the general population due to lack of reproduction among autistics. Baron-Cohen has been able to marry, get a dotorate degree and write books and get them published. Three things that have eluded me that I have wanted to do (though sometimes I am not so sure about marriage). If Baron-Cohen had been autistic at my level of functioning ( I think i am considered high functioning by must standards) he would not have been able to marry, get his doctorate and have his satisfying career or be able to write books about the extreme male brain and get them published. Then I suspect he would consider high functioning autism a disability. I am still wishing that I could do more writing, my nonfiction book is close to having a first draft but not sure i will ever finish a rough draft of the last chapter. Still spending a lot of time playing poker that could be pursued in other endeavors. I don't know how to win at poker. As far as writing is concerned, maybe i am better off just writing stuff in this journal than trying to write a book with publication in mind.
>>posted by jonathan at 10:52 PM
another topic that I would like to discuss is the reason to locate autism's hidden horde. Mark Blaxill and others who claim that there is an autism epidemic state that there are few autistic adults out there. However, I suspect he and they may be wrong. There may be a number of autistic adults, some in their late 70's, 80s and older. One possible fascinating example is that of Max Weisberg. He was a man diagnosed as retarded (not autistic) who died at age 79 about three years ago. He was a savant with a propensity for odds making numbers who ran a rather lucrative illegal bookmaking operation in Minnesota, using his savant skills to calculate the best odds like point spreads in football games. He was arrested by the cops several times but each time, he was either acquited based on a diminished capacity defense or the DA dropped the charges. I think it is likely that he could have been diagnosed as autistic. I believe there is a good reason to spend money on epidemiologic studies to locate people like him, though not necessarily with his savant skills. Progress in understanding the neurophysiology of autism has been very slow. Since many of the symptoms of autism such as speech problems or handwriting problems are uniquely human characteristics there are no really good animal models of autism. MRI scans have produced mix results and have not corroborated autopsy studies For example Eric courchesne found that lobules VI and VII were smaller in autistic subjects than in normal controls, other parts of the vermis were normal. Hashimoto found a smaller vermis, but it was the entire vermis and not just a few parts. Other researchers have failed to replicate courchesne's findings. Courchesne's findings were not corroborated on margaret bauman's autopsies. Though she found cerebellar and limbic system abnormalities, the vermis was the most normal part of the autistic cerebellum. Autistics live a normal life expectancy and the oldest diagnosed autistics, probably by Kanner are about in their early 70s, so post-mortem autistic brain tissue for autopsies is hard to come by. Autopsies may have the most promise though of finding some sort of breakthrough in autism and possibly finding a cure. Person's with Parkinson's disease often die from it. There have been numerous post-mortem autopsies done on this disease and the etiology is fairly well understand Once stem cell research is perfected (admittedly a ways in the future) a cure could be found for parkinsonism. What if older autistics like weisberg (though not necessarily with savant skills) could be located and be paid to will their brains to science? If epidemiologic studies could be done for this purpose, the cost would be justified in my opinion and the potential payoff could be tremendous. No one will think of this idea though as fundraising organizations like CAN and autism speaks have been taken over by people who believe in fairy tales and would rather pursue things like thimerosal or possibly other environmental things that started in the early 1990s that they believe caused autism to rise so much in spite of the overwhelming evidence against it. However, I believe what I have proposed is a good reason for locating autism's hidden horde.
>>posted by jonathan at 11:03 PM
Well, my negativity has been censored again, my friend Stephen Shore has just published his book Autism For Dummies, as part of the For Dummies series that Wiley publishes. One of the many topics related to autism that Steve wrote about in his book was the cure debate, i.e. whether or not a cure for autism would be a good thing or a bad thing. Unlike some very high functioning autistics who are opposed to a cure for autism I am very much in favor of one and wish one could happen (though admittedly not realistic). Steve wanted both sides of the debate so he asked me to write why i wanted a cure. I went into my usual shtick of having trouble holding down jobs, my having been in special ed for many years before beginning regular school, my lack of popularity with women and my fine motor deficits as well as other reasons I hate my ASD so much. The editor of Wiley decided it was too negative for inclusion in the book and edited what Steve wrote just to say that some persons with autism dislike their autism so much they wish there could be a cure. This censorship is sad because it will lead people with a 3 year old child getting diagnosed for the first time, that everything is going to be okay and the parents won't have to worry about them having problems like mine or worse in adulthood. Or people coming grips with the fact that autism is such a debilitating handicap. Perhaps it is time for people to face up to reality.
>>posted by jonathan at 3:07 PM
I am still working on more nonfiction writing and research for autism and I am wondering in addition to the introduction of autism as an IDEA reporting category in the early 1990s contributing to the so-called autism epidemic how much the supreme court's decision in the Shannon Carter case had to do with it. This took place in 1994 and the issue involved a girl's parents suing their school district to pay for her tuition in a special ed private school for children with learning disabilities who employed noncredentialed teachers. The supreme court ruled in the parents favor, deciding that person's being paid with tax dollars did not have to have credentialing of any kind in order for the child to have a so-called free and appropriate education. This decision basically paved the way for Lovaas and his minions to set up shop and have college students as ABA therapists. A lot of the increases in admissions to the California state regional Center took place during this time period up to the present. Especially in clients coming in at younger and younger ages. The unfortunate fact is that the 1987 research is cited in court cases as evidence for ABA's efficacy. However, the research done by Lovaas employed specially trained people. Because of the Shannon Carter decision the typical ABA therapist has no credentials or training and many of them are not even old enough to legally buy alcohol. Some of them are even high school students! Here we have an instance where the science of ABA is totally incompatible with the law. So many studies have shown there to be no relationship between thimerosal and autism. In addition to the fact that i have mentioned in previous journal entries about autism doubling in prevalence when only the DPT vax contained thimerosal and there were actually decreased rates of uptake at the time. I am still waiting for a study showing there is no relationship between IDEA reporting categories and the Shannon Carter Decision and the increase in autism diagnoses.
>>posted by jonathan at 8:51 AM
Well, here goes another post. I want to make a somewhat belated comment of the NPR show that Michael John Carley was on stating that autistics need acceptance and not a cure. Mr. Carley is married has a wife and children. Able to do acting and playwriting and probably making a decent living. His supposed autism is far less severe than mine and at least 99% of everyone else on the spectrum. So, what he says does not apply to most autistics. Also, on the show were anti-curebies Jim Sinclair of Autism Network International. On their list they censor anyone who publically disagrees with them about a cure. Also Amanda Baggs of autistics.org. I just want to be a voice in the unheard wilderness saying I wish there could be a cure and anyone who claims that there is going to be acceptance is dreaming. Of course no one is going to hear about how badly autism has affected me. I realize a cure most likely won't be found in my lifetime and being cured at 50 is different than at 3, but i still wish there could be a cure and it is absurd that people allegedly autistic who don't find out until their 36 whose autism is largely negligible can get on a national radio show and people will think their view is the only one. One must remember the old saw about if a tree falls in the forest 100 miles away from anyone. This is how i feel about my web page since i get so few hits, and so few people will bother to read this. Also it is hard because i don't know how to do paragraphing on this thing.
>>posted by jonathan at 6:02 PM
Here is data from the State California Department of Health Immunization division that I was given. It contradicts the assertions of Mark Geier and JB Handley that there were low immunization rates of children in the early 1970s. These surveys were taken at the time the child was in kindergarten and they have estimated dates of birth going back to the early 1970s. The data are truncated at 1981 but you can see the rates in the earlier years. They contradict the data I got from the CDC showing the 76% rates and then the downward trend, but neither this data or the CDC data i got from the Simpson survey show DTP vaccination rates of 50% or lower as these two and probably other antithimerosal people are claiming. I am waiting for SAFEMINDS and generation rescue to document their data.
DTP/DTaP/DT Coverage, California
Assessment Year of Assessment Estimated Year of Birth Number 4+ DTP1 Percent 4+ DTP1
Kindergarten 1977 1972 197,046 76.1%
Kindergarten 1978 1973 237,823 82.8%
Kindergarten 1979 1974 268,076 84.6%
Kindergarten 1980 1975 277,594 86.2%
Kindergarten 1981 1976 297,761 87.5%
1. Four or more doses of any diphtheria and tetanus toxoids and pertussis vaccines
including diphtheria and tetanus toxoids, and any acellular pertussis vaccine
Source: Kindergarten Assessment, 1977-2005
Prepared by California Department of Health Services Immunization Branch
>>posted by jonathan at 6:27 PM
well i have still yet come to another turning point in my research. It seems that Dr. Mark Geier was incorrect about the increased rates of uptake of the DTP vaccine. It seems that according to CDC statistics it was like around 75% in children aged 1 to 4 in the early 1970s nationwide and if anything there was a downward trend in vaccination rates while the prevalence of autism by birth years accourding to the CDDS report more than doubled between 1970 and 1987. I think that may blow the thimerosal hypothesis out of the water but i am sure it will never convince mark blaxill and rick rollens and people like that. Now it looks like another interesting point has come up. Prior to 1991 only the HIb vaccine was added to the schedule for infants and only some of them contained thimerosal but not all. It maybe as many as three out of four that never contained thimerosal, but i am getting some inconsistent reports vis a vis researching the web. Also, they were licensed by the FDA at different dates. by birth year 1990 the prevalence of autism had tripled to like 12/10,000 from 4/10,000. IF i can get more information about the Hib vaccine, i might be able to get more evidence, but i guess it will be an uphill battle for me as it always seems to be.
>>posted by jonathan at 8:38 PM
well i am now on to the next writing project which is a chapter on the autism epidemic. Now I am trying to find out if there was a significantly increased uptake of the DTP shot between 1970 and 1986 mark geier tells me that it went from 50% to more than 90% during this period. This freelance author who has written on the subject says from 70% to 90% so i am not sure. if the latter is true then this makes the thimerosal hypothesis far more implausible as the prevalence of autism more than doubled during this period. also geier claimed that kids born in 1970 got an average of 3 dtp shots while kids born in 1986 got an average of 5. I thought it was also 4 between birth and 18 months and then there was a 5th shot which was a booster shot at age 5 which would be inconsequential for them getting autism much work will be needed to do the research and hopefully i can accomplish something with my writing but we will see.
>>posted by jonathan at 7:55 AM
Well, i am in the process of trying to write a nonfiction book and it is going slowly. I am doing research on Lovaas and ABA. There seems to be a number of problems in the 1987 study. One of the problems of interest is that although the ratio of autistic boys to autistic girls is 4:1, there were 11 boys and 8 girls in one of the control groups. How such a high proportion of girls got into a control group which was obtained through what was considered functionally random assignment of subjects into experimental and control subjects i cannot possibly imagine. Also it turns out one of the girls in the control group had Rett's syndrome which is a somewhat different condition from autism and also results in severe retardation. This condition has a prevalence of about 1 in 10,000, meaning it is at least four times lower than what the prevalence of autism was thought to be in the 1970s when lovaas started doing the study. wonder what the odds are of this subject just happening to get into the control group. Lovaas and others later wrote an article discussing the use of ABA in three girls with Rett's syndrome and how it was ineffective for Rett's. It was later revealed that one of the three girls was in the control group. Another girl was treated with ABA at one of the lovaas replication sites in norway, the third was also described as having received 10 hours a week of ABA (the same number of hours given to the low treatment control group) and being part of the UCLA young autism project. I don't know if the young autism project was the name given to subjects in the 1987 study or if it was a name that included that and other research projects. I still wonder if maybe there were two girls with Rett's in the control group and not just one. Having one girl with Rett's in the control group would make ABA look more effective. Two girls would make the statistics look still better.
Because of Tristram Smith's revelation to Richard Boyd, we know that one of the two Rett girls was in the control group, but I guess I will never know if the second girl was part of control group. Oh well, so it goes.
>>posted by jonathan at 4:57 PM
Well, i just finished my 20th short story. That is a landmark of sorts. I think my muse may have left me. This current one just does not come up the caliber of some of my others. Originally, I was going to submit it to lynx eye, but now i don't think so. No point in submitting anything but my best work. Of course, i have not submitted a short story anywhere in a while. I am still pretty lonely and depressed. Wish life could get better and that i could stop being so negative, but it is not easy. I am going to try to have a more upbeat attitude but it is not easy. I know some of my other short stories were a lot better than others. Who knows maybe there is some hope i could make a come back with my writing of some sort, but only time will tell. Tim, who does my website and heard me on the radio gave me a link on his web page and he states i am his favorite writer. That is so flattering. well enough rambling, i guess i will do the journal again when i feel like it but short story no. 20 seems to be a milestone of sorts so i thought i would post in the journal again.
>>posted by jonathan at 9:22 PM
i am going to try to be less negative though i know it won't be easy for me. I wish i could have a more positive attitude but not easy.
>>posted by jonathan at 4:29 PM
Well I participated in the CAN walk and it was okay, not great, did not really get to meet anybody. CAN stands for Cure Autism Now. I know that it is most likely a pipe dream in my lifetime, but in my opinion it would be great if there were a cure for autism. Remember the old arab proverb, the discontented child cries for toasted snow. There are some high functioning autistics that are against a cure and don't like CAN. I am not in that group. The founder of CAN, Jon Shestack (same first name as me), has a son who is much more severely autistic than they are, and those high functioning autistics should think about that.
>>posted by jonathan at 7:43 PM
Well, i just wanted to add that recently i finished writing that piece that i was planning to write. I submitted to Reason magazine, they rejected it. i am not sure where i will submit it next. I will see, but the article talks about the various theories for increased incidence of autism as well as the temporal relationship between changes in the IDEA law that took place between 1986 and 1990 and the highly increased incidence of autism that has been reported. Diagnosis gets services means more tax dollars will be spent on treatments of dubious value and it will jam the courts with more lawsuits as desperate parents try to fight for having a typical kid. All of this is a shame but getting rid of IDEA is admittedly a pipe dream.
Incidentally, on another note, ABA equals the autistic as a "clockwork orange" I encourage all ABA therapists and parents who practice ABA on their children to read the Anthony Burgess novel and think about the philosophical message that Burgess was trying to espouse in his novel. (one of my favorite novels by the way). Some may have seen the Kubrick film based on the novel but Kubrick's film ended the story prematurely. There is a last chapter in which the protagonist, after being conditioned and then deconditioned, decides of his own free will that violence is not the answer. Well read the novel A clockwork orange if you are interested in learning more.
>>posted by jonathan at 8:27 PM
Well, this is another attempt at creating a journal. i am excited about the new web page that my newly found fan and friend, tim made for me. Hopefully someday i can rewrite the novel and fulfill my pipe dream of getting it published. Now, I am in the process of doing research for a possible nonfiction piece suggesting that changes in the IDEA law in 1987 may be responsible for the increased incidence of autism we are seeing. it would make sense that people would go out of the way to get their developmentally disabled children diagnosed as autistic to get services at taxpayer expense. Well lets see if this works.
Well, I am going to try to post to my journal again. I just wanted to enter a disputation to what kathy harris wrote in my guest book. She states the MIND study invalidates my claim that the increased incidence of autism is due to changes in the IDEA law which took place between 1986 and 1990. Well, she is mistaken about that. In an editorial in the new york times this past October 22, it was cited that this was an actual shortcoming of the MIND institutes study in that they did not control for parents desires to obtain services being an explanation for the increased incidence of autism and Dr. Robert Byrd acknowledged this later in a letter to the New York times. I realize Ms. Harris loves her son and wants to do what is best for him, but early intervention and expensive special ed are not the answer and there are no easy solutions to the problems of autistic children.
>>posted by jonathan at 11:18 PM
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