Wednesday, December 31, 2008
Gadfly's new years ramblings
Now that this is the last day of 2008, I would like to contemplate the year past. This has been a rather interesting year for yours truly. Autism's gadfly is almost one year old as I started this blog sometime in January 2008, though I don't recall the exact date, so in that regard 2008 was a unique year with a turning point for me. I blogged prior to this on Jonathan's Journals which was a page on my Jonathan's stories site . There was no commenting and it did not have the same look as blogger blogs so I decided to get a separate site for my blogging. Also, at the beginning of 2008 I wrote an article urging people to reject neurodiversity. This created some angry responses from those who believe in this (in my opinion) flawed philosophy. Soon after this, I moved my blogging here and have had interesting exchanges with these people since. This blog is rather unique in that unlike other blogs it does not preach to the choir in comments and gets mostly negative responses from neurodiversity people. Canadian blogger Harold Doherty, who, for good reason, shares the contempt that I have for the neurodiversity movement, gave my article a shout-out. He then wrote a piece later endorsing autism's gadfly. I appreciate this in light of the fact that he is a big booster of ABA and I have been somewhat critical of this approach to treating and educating children with autism. I think Harold was thankful for my perspective on the ND though as this movement really trivializes the very serious behavioral and cognitive impairments of his son connor. This goes for other parents as well. I have continued to write blog posts against neurodiversity in this blog. I have wanted to devote more time to other topics, but the outrageous behavior of so many in this movement has prompted me to write perhaps a bit more about them than I should. Then an article in New York magazine came out about this movement and I was given a brief mention and had a bit of my article quoted. Kathleen Seidel has taken credit for my mention. She also states that she told the author of this piece about John Best and Lenny Schaffer, two other neurodiversity detractors and they were mentioned in the article. Though neurodiversity provides some aggravation for me, I will try not to worry about them too much. I remember the Arab proverb the dogs may bark but the caravan moves on.
2008 has been a watershed year for me in another way in that this is the first year since 1979 that I have not attempted to work and make a living. As some people who read my writings know, though I worked sporadically (probably working for longer periods than I was unemployed) from about September of 1979 to my last failed attempt in late June 2007. The problems in the workforce became so severe I was forced to retire. I have not given up hope of maybe someday being able to work again, but it won't be easy especially in this economy.
I have shelved "The school of hard knocks". The nonfiction book that I have written a first draft of and have worked on and off on has also been gathering mothballs. However, one of the ten chapters, my article about Gates, Einstein and Jefferson, is on my jonathans-stories site which I don't think I need to link to and the interested reader can find. I also have written some other excerpts from the book here on autism's gadfly and perhaps other places on my web site as well. I have been working on a novel about an autistic poker player and some of his adventures on and off for a while and i am hoping with some research to do some more work on it at some point.
My disability has made it quite difficult for me to apply myself and do the things I want to do, so though I can't help but having some hope (as irrational as that may be) the prognosis for the future may not be good and I can't help being a bit depressed.
Though 2008 was a bad year in some respects, it was a relatively good year(as good as I could have) in some others. I am going to look forward to 2009 and perhaps I can see if perhaps I can't have some interesting adventures with this blog, in other writings and perhaps even some web related stuff and maybe some other matters as well. At the end of Gone with the Wind Scarlet O'hara said tomorrow will be another day. Well I suppose tomorrow will be another year and perhaps I can make some progress. Again, a happy new year to all.
Monday, December 22, 2008
New Jersey: The special education largess state?
Some school districts that have enough classified students to have their own programs end up attracting more autistic students such as the Cherry Hill school district in South Jersey. "When Districts have good programs they become magnets" Charles Lange, director of special services, for the Cherry Hill district, was quoted as saying in the article.
The article quotes the costs of educating one severely autistic child as $200,000 a year placement in a residential school.
The 1 in 150 prevalence figure that is oftcited for autism comes from the study that the CDC did two years ago. They studied several states and this figure was not universal for each state but was an average of several states with Alabama being well below the average and New Jersey being well above the average of 1 in 150 in autism prevalence.
Those who believe there has been a real autism increase due to some environmental factor cite the differences in pollutants between alabama and new jersey as the cause but provide no real evidence. As far as I know, no one has shown that vaccination rates are higher in New Jersey than in other states.
Those who may not believe the increase is real would argue that perhaps due to services or more money being spent on special education students in New Jersey, that the state is attractive to those out of state who will move to New Jersey seeking services. The findings of the CDC study argued against this showing that the majority of children with autism in New Jersey were born in the state.
However, the CDC study does not control for differences in service level of various school districts within the state and persons within the state moving to another district and obtaining a coveted autism diagnosis due to the huge amount of money some school districts in this state are willing to spend on special education students. Perhaps, this largess is an explanation for the high prevalence of autism in New Jersey.
One must question what all of this spending on special education accomplishes. As I have written before there are no adult outcomes published from the children who supposedly achieved normal functioning in Lovaas (1987). What good does speech therapy and occupational therapy do? How do these children fare as adults? As far as I know, there are no employment figures showing reduced unemployment among autistics or a casual relationship or even a correlation between special education spending, early intervention and improved outcomes of autistic children. Various researchers such as Peter Szatzmari and Eaves and Ho have shown that in some cases autistic children end up having very good outcomes regardless of what intervention is done. If someone improved while getting special education services there may not even be a casual relationship.
One also must remember the questionable cost-benefit analyses of Jacobsen et al based on Lovaas 1987, which erroneously assumes that interest rates and the rate of inflation will remain stable for decades. Also, the cost-benefit analyses don't take into consideration that punishments such as hitting children and electric shocks were the effective ingredient in Lovaas (1987) In states such as California, where I live, aversives have been outlawed, so the findings of Lovaas 1987 would not be applicable to the type of ABA these states would do without aversives.
Regular readers of autism's gadfly will also recall that I wrote a piece about half of special ed students failing the high school exit exam .
Also, an article appeared in the atlantic journal constitution some years ago by Andrew Mollison (sorry could not find it online or would link it but did read it when it came out in 2002) Showed that since the inception of the IDEA that disabled students were failing to make overall gains in test scores and that almost a third of them ended up as high school drop outs. Mollison further reported that only 28% of states reported average scores of the disabled children improved in any way. The then time assistant secretary of the u.s. department of education, Robert Pasternack, stated that the longer the amount of time a student spent in special ed, the bigger the gap in test scores between them and the regular ed. students.
Given the above facts one has to wonder whether all of the money the state of New Jersey spends on special ed is money well spent. One also wonders if New Jersey is not a haven for special educators, speech therapists, etc. looking for a quick buck at the expense of children diagnosed as autistic and whether this diagnosis does indeed follow the dollar sign in New Jersey. Perhaps this huge spending on special education that the state of New Jersey engages in are part of special education being one of the great autism ripoffs, that I hope to write about someday in Autism's gadfly. Of course, doing the requisite research is hard for me due to my disability. I have started to do it and then I came across this very fascinating article in the New York times and it was the inspiration for this blog piece. Perhaps a study should be done showing how many ABA therapists, speech and occupational therapists have moved to New Jersey from other states.
Tuesday, December 16, 2008
More cattle manure from Temple
Next Grandin is quoted as saying that "everyone with autism is detail oriented" as if she knows every single autistic person. Stereotypes like the ones she used to make about all autistics being visual thinkers are common for her. She seems to think all autistics fall into her unique mode of being when she has only met a fraction of all of the autistics in the world.
Grandin once more goes into her tired cliches of channeling obsessions into careers, saying if a kid wants to draw trains let him do so as it might lead to a career in graphic design or a career in the railroad industry. It is such juicy irony that she would pick the railroad industry after all the mishaps of Darius McCollum who was obsessed with trains and became an expert on the New York Transit system after befriending some of the people who worked there during his childhood. Instead of a job as a train driver, McCollum has spent a good portion of his life cooling his heels in prison for taking trains for joyrides due to his obsession. Grandin then pulls a rabbit out of neurodiversity's hat, claiming that kids who have the potential to be computer programmers end up being dishwashers because society tells them they can't do it.
Grandin goes on to say that the problems of autistic children could be mitigated in school if all school children were forced to wear uniforms, then the autistic people who don't wear fashionable clothes would have an easier time of things. She claims that in some countries such as the Phillipines she has seen first hand how school uniforms help autistic children. Welcome to the military! thanks Temperamental. I wonder how American school children who would certainly be culturally different than children in third world nations would feel about this. What if they found out they were forced to wear uniforms because of autistic children. I can't help thinking the retribution that would take place against autistic children in schools would make the bullying they currently have to endure look like a love fest.
Grandin then continues to branch out her expertise from livestock facility design into the economic state of the U.S. currently, talking about the recession and the bailout making the bizarre claim that the wall street bankers should have been engineers and how they failed to see the big picture.
I believe that Grandin presents some dangerous propaganda with her simple quick fixes not only for autistic children but even the U.S. Economy.
Recently an anonymous poster in another blog post i made commented on how the same autistics who can get the name recognition, e.g. temple, donna williams, stephen shore, lianne willey, etc. are constantly recycled (apparently in the same manner of the waste products of the cattle that Grandin works with). Though I am an agnostic and practially an atheist I will say metaphorically, God protect us from recycled autistics like Temple.
Sunday, December 14, 2008
Neurodiversity members should contact autism speaks about no asd board members
The controversy continues unabated. Two bloggers who are parents of autistic children, Lisa Jo Rudy and Kristina Chew have posted this question on their blogs. The latest to enter the fray is another parent of an autistic child and special education teacher and published author Mike Stanton, who asks, "Will Autism speaks ever speak for us?" Apparently he is asking is there some way we can get neurodiversity members involved in autism speaks, take over their hard earned capital and use it for our own purposes which totally disagrees with AS. These marriages of convenience do happen. After all, Anna Nicole Smith had a billion reasons for marrying that oil tycoon who was 61 years her senior. My friend from Norway, Ivar, (not Ivar Lovaas but an ND with the same first name) says that he posted something to autism's gadfly about how he felt money should not influence policy towards autism. Apparently his post got lost somehow as I never saw it. Well Ivar, if you read this, it is the sad truth. In the United States, we do not have the socialist policies that Scandinavian countries such as Norway and Sweeden embrace We have a capitalistic society here and those who manage to get on top, have power and can run the show. That may or may not be fair but that is just the way it is.
Though in the days when I was employed and had more money I donated money to CAN and NAAR on occasions before AS was created, I have never donated money to AS and probably would not for a variety of reasons even if I could afford to. I have never worked for autism speaks and have no involvement with them. I have no idea why none of their board members has autism but I realize it is an interesting question. I am just curious about the motives of those who usually ask this question.
In light of these facts I must ask the members of the neurodiversity crowd a question in response to their question about why there are no board members with autism at AS. Why haven't any of you called autism speaks or emailed them and asked them why they have no members with autism on their board. Perhaps they will give you an answer. Why can't their side of the story be told?
During the time when Zach Lassiter was claiming that AS was trying to prevent him from selling a t-shirt with a critical message about them emblazoned on it, I questioned the validity of the claim. It seemed far fetched to me that a multimillion dollar charitable organization would take time to harass a small time t-shirt entrepeneur. I called autism speaks and they referred me to a woman named Dana Marnand sp?? who is their communications director. I was told that Zazzle who marketed Zach's t shirts felt that Zach was violating their terms of service and Zazzle unilaterally decided to discontinue Zach's t-shirt advertisement on their web site and autism speaks had nothing to do with it. When I challenged the various members of ND who were using this as an excuse to bash autism speaks to prove me wrong they were not able to do so. It turned out that neurodiversity's cause celebre of the month was completely bogus.
I also emailed the research department at Autism Speaks, complaining about the fact that they fund the Lauren Mottron lab who employs Michelle Dawson, an anti-cure propagandist. They responded that research grants were carefully reviewed. Though I was not happy with their response they did give me a response and were polite and helpful.
If the members of the ND movement who ask this question are really interested in an answer why don't they just contact AS and ask them and find out what their answer is for themselves. Or maybe they don't want an answer to this question. Maybe they just want to use this as an excuse to vent their anger. Perhaps this is a thinly veiled marriage proposal, hoping that somehow they can acquire the millions of dollars of ready made capital so they can more easily pursue their own agenda. If neither one of those scenarios are true why don't these people just ask AS why they have appointed no board members with autism. I suspect they would get an answer of some sort. Even if they don't it won't hurt to ask What is the harm in asking? Or maybe ND has some ulterior motive for asking this question on the internet without contacting autism speaks and getting their side of the story?
Wednesday, December 10, 2008
Lisa Jo Rudy's strange choices for the autism speaks board
However Lisa Jo Rudy of the autism about blog seems to have some other persons in mind. She suggests Temple Grandin, Stephen Shore, Ari Neeman, John Michael Carley and Michelle Dawson. Not a single one of these five persons is in favor of curing autism yet for some reason that is beyond my comprehension Rudy seems to feel that these five should be considered for an organization who is in favor of curation and prevention when all of them have publicly stated they are adamantly opposed to this notion. Two of the five have asperger's rather than autism and would not even have been diagnosable as autistic during their childhood based on the diagnostic criteria that was extant during that time. Shore already serves on the IACC for some strange reason I can't fathom when he is against a cure for autism yet the IACC was created out of the combating autism act which states curation and prevention are goals.
Michelle Dawson, works in the laboratory of Laurent Mottron which receives funding from autism speaks in spite of the fact that in some of her writings she makes it quite plain how much she despises this organization, yet she continues to work in this lab and has not resigned in protest.
Should members of the Ku Klux Klan be appointed to serve as board members of the NAACP. How about if the DNC just to be fair puts five republicans on their board of directors, after all the fact that they are all democrats must be unfair to the republicans.
It seems to me that most if not all of the people who complain about no autistics on the board of autism speaks are those with a neurodiversity agenda who are opposed to a cure and prevention and seem concerned that research funded by AS will someday lead to selective abortions of autistic fetuses.
Could these people have an ulterior motive for serving on this board. It seems there is a pattern among at least some persons in the ND movement to attempt to hijack the capital of others who have worked hard to earn it. Bob Wright worked very hard to acquire the capital for AS so his grandson might have a slim chance of a decent life that the ND people want to seem to deny his grandson in the unlikely event a cure or at least some other treatment from AS's scientific research were found in our lifetime. Ditto for the persons who donated money to AS and organized the walks and walked so that their children and relatives could have a chance of a better life but have been called eugenecists by people who seem to think they should serve on their board. Michelle Dawson has advocated that scientists who do not agree with the agenda of AS apply for research grants there. Ari Neeman and others in the ASAN have urged persons to request things from the IACC which grew out of the combating autism act a law which they made very plain that they did not like and which they attempted to prevent congress from passing. Yet they want to take advantage of this law they don't like.
It is quite possible that the ND movement just wants to take over the large capital of AS, as they are a movement whose numbers are too small to raise sufficient capital to start their own organization and fund raising efforts.
When I suggested that as a person on the spectrum who wants a cure for autism that I should be on the board and that if i were running the show the funding the lauren mottron lab receives from AS would be discontinued since they employ Michelle Dawson this nasty neurodiversity hatemonger who calls themselves alyric who is apparently a pal of Dawson's berated me saying that what i was doing was malicious spite and made the nasty and abusive personal attack that my minder did not teach me any manners.
I think it is likely that an AS board member who agreed with the cure philosophy who was autistic would be called a token autistic and a house autistic and would result in the ND anticure movement starting yet another internet war on top of all the others they seem to have a proclivity to start.
Ms. Rudy's suggestions for board members clearly baffle me and I hope that if there is an AS board member on the spectrum they will not be drawn from the ND crowd.
Tuesday, December 9, 2008
Evil special educators redux department
Saturday, December 6, 2008
more interesting stuff about Bill Gates
No one can really dispute that at least in large part extraordinary luck played a part in Gates' acquiring the knowledge that he did. Not to mention the fact that he was able to make friends with Paul Allen who also attended the Lakewood school and also acquire the same type of knowledge that Gates did. As my psychoanalyst used to say, "two heads are better than one" so that was all the more strength for the fledgling microsoft when Allen helped Gates with the new startup in the mid 1970s.
To those who claim that Gates is autistic and that his success proves that autistic people can succeed, I saw, read Gladwell and look at these facts.
Saturday, November 22, 2008
Insurance coverage: salvation or harm for autistics?
One of the problems with pursuing legal recourse against school districts is the landmark supreme court decision in the Rowley case in which it was determined that appropriate did not necessarily mean best. There are certain parents who don't understand this concept. One of the more prominent of these is blogger Kristina Chew of the autismvox blog. She has consistently stated how she believes that she is entitled to the best educational opportunities for her son at taxpayer expense, even though the supreme court has nixed this option. Sometimes special education lawyers advise the parents whom they represent to never use the word "best" when asking for services from the school districts for their children. This might make it hard for a parent, for example, to receive 40 hours a week of ABA for their child, because less hours might be deemed appropriate. Then when the coin flip probability of complete normalcy that has been promised with this treatment is not obtained for the child by the time they are 7 years old, then the behaviorist excuse of not enough hours can be employed. Also this is not to mention the problem of costly law suits and having to pay an attorney thousands of dollars up front in some instances for the dream of normalcy and the child becoming a productive member of society not having to live in the dole as an adult and being able to function in society. Nor to mention the conflicts the parents have to go through with the school district and the work of having to have an IEP. Often, it is the well-to-do that have these options available for them, having both the money and sophistication to employ legal counsel to pursue their agenda, and the less affluent being left out in the cold.
One perceived way to circumvent this misery is for medical insurance to pay for these treatments instead. There would be no IEPs, no costly attorneys (or at least in less instances). All the parent with medical insurance has to do is file a claim with the insurance company and come up with a percentage co-payment. If they belong to an HMO such as kaiser permanente, they could have tens of thousands of dollars in ABA therapy paid for nearly in full.
Autism speaks and other organizations have made a push to have coverage for autistic children. There have been pushes in Virginia, south Carolina and Pennsylvania for at least limited insurance coverage for these treatments for autistic children, that until very recently insurance companies would not pay for because the treatments were either considered experimental or educational rather than medical.
As I have written in the past, the efficacy of ABA is dubious. Even though Lovaas and his disciples such as Tristram Smith have been given top priority NIMH funding to study adult outcomes in the children in their famous 1987 study, they have yet to publish these though they have presented data informally at conferences claiming some sort of effective adult outcomes. But still there is no evidence that children who undergo 40 hours a week of ABA will be able to be gainfully employed or be successful as adults. Ditto for speech therapy and occupational therapy. I was a nonverbal autistic in the late 1950s who fully recovered my speech with the only intervention being psychoanalysis. Even if an autistic child who undergoes speech therapy recovers their speech this does not necessarily mean there was a causal relationship between the speech therapy and the child talking by the time they are five years old so the financing of these treatments via insurance may not accomplish much.
What is most worrisome of all to me is that autism may be considered a pre-existing condition by insurance companies and HMO's such as Kaiser who often cherry pick patients based on lack of pre-existing conditions. Until recently autism would not be considered a pre-existing condition. A parent who wants to get medical insurance for their autistic child to treat conditions not related to their autism would not have a problem getting the insurance. But what if this insurance legislation is passed in a lot of states. What if the cap on treatments becomes higher than $50,000 after even more intensive lobbying by autism speaks and other advocacy organizations? Does this mean that Kaiser and other HMOs will start excluding families from coverage due to having an autistic child? Does this mean that if an autistic child gets leukemia, Crohn's disease or needs orthopedic surgery of some sort they will not be able to receive treatment? The answer would seem to me to be yes. Would this mean that parents of the children would be excluded from medical coverage as well. This might mean that if the parent had a treatable medical condition they might not be able to get insurance because of their child's pre-existing condition of autism.
For this reason it seems that this insurance lobbying is not only more tears of toasted snow being cried by the parents of the children but also could provide great harm if the children are not able to have medical treatment that they need that is unrelated to their autism if they need for it to be covered by insurance.
Friday, November 14, 2008
autism speaks ensures journal articles of research they fund are available
Autism speaks has announced a new policy They now have a policy where all researchers who receive funding from them have to put the resulting publications into pubmed central online archive within 12 months of publication. Access to these articles is free. This is a good deal for those who do not live near a biomed library like UCLA who otherwise might have trouble obtaining journal articles like these. Normally these articles can be purchased over the internet by interested parties, but the cost is often like $30 or more per article, which seems to me to be pretty steep just for a journal article. This will help disseminate information to those persons who are interested in autism and the research findings of those who receive funding for research from autism speaks. Autism speaks says they are the first nonprofit organization to implement such a policy. these articles are available at www.pubmedcentral.gov for those who are interested in these forthcoming articles as well as other free articles that are available.
I wish everyone from the government on down (or up depending on your point of view) would institute this policy. I live near UCLA so I can obtain a lot of these articles if need be. Of course it is always a hassle to xerox them and it costs like 15 cents per page at UCLA and you have to purchase this card to use in the machines. Due to my perceptual motor problems, I sometimes have trouble lining up the pages properly and it takes several attempts for me to xerox some of the article pages and get everything on the page.
UCLA used to have the Journal of Autism and Developmental Disorders on their shelf in the biomed library which I would browse on a regular basis. At one time, this publication came out four times a year. Due to the increased interest in autism research, the JADD now publishes something like eight times a year. UCLA no longer seems to have it on their shelves and this is a disappointment to me. My disability and other commitments make it hard for me to keep up with as much research as I would like to keep up with. Hopefully someday that will change and I will have more juicy tidbits to add to this blog. I think now UCLA has JADD and some other journals available online and maybe some day i will investigate and become a more regular reader of JADD and then some of the other journal articles.
Though admittedly autism speaks is a less than perfect organization, I applaud them for instituting this policy.
Wednesday, October 29, 2008
autistic middle school student starts school club for autism speaks
Walk Team News Congratulations to David McKibbin (a young man with ASD) for starting the first Palm Beach County Student Club for Autism Speaks at Bak Middle School of the Arts. Recently we spent a day at the school talking to students about autism and how student involvement can change the lives of everyone at the school. Meet David at the Kick-off Luncheon on December 3. The Bak Student Club for Autism Speaks has already started their fund raising efforts by selling candy during lunch. We want to spotlight you and your team fund raising efforts! Send your fund raising story to firstname.lastname@example.org and see it in an upcoming email blast.
So it would seem that contrary to what some persons in the neurodiversity movement believe there are some persons with autism who do support what autism speaks does and their research. These proponents of neurodiversity give persons the misguided idea that the vast majority of persons on the autistic spectrum think exactly as they do. Though some of the criticisms that certain people make about autism speaks may possibly be justified, such as the fact they are like a big corporate entity that spends money on salaries, jets and other frills that could be going to autism research, they are a good organization in some respects in that they fund research that will hopefully someday lead to a cure for this dreaded disease or if that is not possible at least prevention. Prevention, not abortion, meaning that the person will have a shot at a better life. This is yet another example where neurodiversity is mistaken about at least some autistic persons not wanting a cure.
Some of them may claim that as a middle school student, David Mckibbin may be too young to know any better and may have been fed propaganda or been indoctrinated by his parents. However, one must remember 14-year-old Kelly Beck who made the nasty website NT speaks and when autism speaks threatened legal action she was forced to close it down. In fact, she did not even want her parents to know about it as I recall.
Hopefully, to the chagrin of the ND movement, there will be more student clubs like this and more and more autistics who have the good sense to promote research leading to curation and prevention.
Wednesday, October 1, 2008
Neurodiversity hypocrites attempt to hijack IACC and CAA
The autism self-advocacy network has not failed to miss the beat. They have made multiple requests to the IACC and how they should pursue an autism agenda that mirrors the same tired cliches propagated again and again by the ND movement. Not doing research with the intent of curing or preventing autism, not referring to autism as "devastating", or as a "burden". Also, they note the fact that only 1% of the NIMH's budget goes for services to help autistic persons and believe that this should be rectified.
In one of the most bizarre statements they write:
Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.
Along with ASAN president, Ari Neeman, this ND agenda is signed by some other persons as well including the author of the Joy of Autism blog Estee Klar-Wolfond.
If I am not mistaken, Ms. Klar-Wolfond is a Canadian citizen not living in the United States who I am fairly certain has never paid a dime in American taxes. Yet she seems to think for some odd reason that she has a right to make suggestions to the IACC, which is a U.S. government agency created with American tax dollars. Last year, I wrote about two other members of the neurodiversity movement, Michelle Dawson and Mike Stanton who also were writing letters trying to influence the direction of NIMH autism research totally funded with public sector dollars, in spite of the fact that it is very unlikely either has paid any American taxes, yet they feel they have as much right as I have as an American taxpayer to make suggestions for directions U.S. taxpayer funded autism research should take.
I would like to comment on some of these points. First, they seem to think there is something wrong with the fact that 99% of NIMH's budget does not go to these services they so covet. I think there is something wrong with it also, but only because instead of 99% of spending on medical research the NIMH's budget should be 100% funding of medical research. What Ari Neeman and his pals don't seem to understand is that this is the purpose of the NIH and NIMH. You notice the h stands for health. This is because being autistic is being in poor health. Someone who has autism has a disease, a disorder, etc, though I am not sure everyone in the ND movement understands this. This is why the NIH and NIMH were set up to fund medical research and not services. The reason scientific research is funded in autism is the hope to find more effective treatments including prevention and even a possible cure. Some persons in the ND movement seem to think this research is funded so scientists can pay their mortgages and amuse themselves. They should be lobbying congress for services if this is the direction they want autism funding to take, but not under the combating autism act.
You notice the italicized statement about not making autistic children nonautistic but allowing them to function as autistic people so they can maximize their capabilities. Such incredible oxymorons seem to be par for the course for the ND movement. If they function like autistic people this means having language problems, self-stimulatory problems, inability to relate to people, etc. The only solution is for them to function as non-autistic obviously. The ND movement can't have it both ways no matter how hard they try. If they were able to function properly, they would be cured, they would no longer be autistic. Of course the ND movement fails to understand this.
What is most interesting of all, the ND movement seems to want to take advantage of a law that they don't like. We can see examples of this here and here We see by the second example that the CAA was originally drafted by Cure Autism Now, the favorite whipping boy of the neurodiversity movement before they were gobbled up by Autism Speaks. This seems ironic that neurodiversity is clearly opposed to the intentions of this law, which are to prevent and cure autism, yet they want to take advantage of one of its provisions. Seems hypocrisy is pretty rampant in the ND movement. The main reason is that the neurodiversity movement is really very small and weak. The persons involved in it have limited capital and lobbying power. The internet gives the illusion that the ND movement is stronger and more powerful than it really is. This prevents them for being able to pursue their deranged agenda on their own and having to hijack the money that was set aside for something they oppose and for them to try to use it for something other than its intended purpose.
This is aside from the fact that the IACC is pretty much a colossal joke. They have one person on the autism spectrum, Stephen Shore, who serves on the committee that was created for the purpose of curing and preventing autism, yet he himself is opposed to a cure for autism. They also have Mark Blaxill and Lyndell Redwood, who cling to the disproven hypothesis that vaccines cause autism, guiding the direction that research takes. Not that I think a cure for autism will be a reality in the foreseeable future even if the funding bodies did not make so many blunders, but having people like these three on the IACC does not bode well for future research.
This complete hypocrisy of the ND movement is among the many reasons that I urge people to just say no to neurodiversity
Wednesday, September 24, 2008
research leading to possible cure for autism
Monday, September 15, 2008
nearly half of california special ed students fail high school exit exam
In spite of the pie-in-the-sky promises of the IDEA, ABA for autistic children etc., it came as no surprise that only 53.8% of those special ed students passed the exam while 46.2% failed. So nearly half of all children in the california high school classes of 2008 who receive special ed services won't be receiving their diplomas. By comparison 93.6% of non-handicapped high schoolers passed the exam.
Sid Wolinsky from Disability Rights Advocates who tried to exempt special ed kids from the exam was quoted as saying that the psychologic damage to these children is horrific. Dozens of parents of these children offered Wolinsky sworn declarations of their children's depression from failure of the exam. It must be noted that the California state law only applies to public schools and private school students are exempt. It was the class of 2006 who was first required to take this test. Special education students were exempt in 2006 and 2007.
State supt of public instruction, Jack O'Connell who sponsored the exit exam bill for then governor Gray Davis was quoted as saying that exempting special ed students from the exit exam was not helping them and setting them up for failure in the workplace.
One of the reasons for passage of the Education for all handicapped act in 1975 (later to become the individuals with disabilities education act when it was reauthorized in 1991) was that if handicapped students were to receive educational opportunities, that this would help them succeed in the workplace and welfare, SSI, etc. would be greatly decreased for those handicapped children who received IEPs under this law. Someone named Jacobson also did a cost benefit analysis of ABA for autistic children stating the exorbitant costs of ABA therapy were greatly exceeded by the costs of a life on the dole and claimed that ABA was saving autistic children from life on the dole. The quality of science in this analyses was typically very bad, as no adult outcomes have been published in the peer reviewed literature for ABA. Jacobson only used an informal presentation at a conference to prove ABA's efficacy in preparing adult autistics for the workplace.
The IDEA has now been in existence for over 30 years, spending on special education increased 60 fold in less than a 30 year period. One has to wonder if the nearly half of special ed students who failed the exit exam won't have significant problems in the workforce starting at age 22 when they are aged out of special ed services. Perhaps it is time for reexamination of the IDEA and whether or not this law should be abolished.
Sunday, September 14, 2008
Banned from wrongplanet forum
Someone named Harry Brown then went on to claim that he has tried to be helpful to me in the past suggesting ways that I could work and get my writings published. Interesting I have never seen those posts. I have only just seen some nasty, angry comments about me that he has made on wrongplanet. What is more bizarre is that harry brown claimed he thought that my essay about undiagnosing gates, einstein and jefferson was not very good. He basically called it a high school essay, crap, said I was crass and superficial etc. Yet he seems to think my writing is good enough to be published if he has offered me help in getting my writings published in the past. That seems very strange to me. Mr. Williams seems very angry and often makes abusive posts from what I have seen. It saddens me he has to embrace a flawed ideology like neurodiversity just so he can feel better about himself.
I tried to post a follow-up to Seidel's and William's nonsense and then was notified that I had been banned from the forum.
I said nothing rude or nasty to anyone. I was very polite. It just seems that wrongplanet.net wants to engage in censorship. Some of the members it would seem complained to someone and got me banned from the forum. As is typical, in the neurodiversity movement, they are intolerant of anyone who disagrees with them. When I have deleted some posts here by people who were very abusive towards me, harassing me, trying to bait me, etc. They have cried censorship, etc. Once again neurodiversity seems to throw stones from a house made of extremely fragile glass.
I guess there is no point in anyone trying to post on wrong planet who disagrees with anything they have to say as they are clearly intolerant and have no interest in having a dialogue with anyone. I guess this is par for the course from the neurodiversity movement.
Saturday, September 13, 2008
Sarah Pallin wants to cure gays and an interesting short story i wrote
Thursday, September 11, 2008
Vaccinated versus Nonvaccinated: Maybe Tom and Sally Can Pick up the Tab
The latest study is nothing new. Many studies before this have shown evidence that not only does MMR have nothing to do with autism but thimerosal in vaccines and mercury don't either. Yet what is the point of doing study after study. There is clearly nothing that will convince a good number of parents that their offspring's autism was not caused by vaccines. We only have a vicious circle that in my opinion accomplishes nothing. In fact, in order to determine that there was no relationship between thimerosal and autism all one has to do is look at the 2003 update of the california report on the prevalence of autism showing that between birth years 1970 and 1990 when there was only one thimerosal containing vaccination prevalence of autism tripled. I have written about this.
Various explanations were given when I asked the persons pushing the vaccine hypothesis about this. Sally Bernard claimed that due to new laws mandating vaccination for school attendance caused a huge increase in uptake of the DPT vax. Mark Geier also made this same claim to me and added that at one time there were only three shots given to a child and then the number increased to five. The problem with this is that there would have had to have been a corresponding decrease in whooping cough over the same time period which would have been of a much greater magnitude than the corresponding autism increase. No more than three shots were ever given to a child before the age of 1. In UK where autism increases have paralleled those of the U.S., they have only had DPT as a thimerosal containing vaccine yet, only accelerated the schedule giving children shots at earlier ages during infancy. The fifth shot is a booster shot given to children at age 5 which obviously is inconsequential for causing autism.
One of the most interesting explanations was given to me by Boyd Haley who claimed that there were a number of thimerosal containing products such as ophthalmic solutions and other things besides vaccines that increased from 1970 to 1990. Yet, as far as I know, SAFEMINDS and the other mercury causes autism groups have never shown any data of thimerosal containing products besides vaccines.
Haley also told me in his correspondence with me that he could be convinced that there was no relationship between autism and thimerosal if a study were to be done comparing autism rates in vaccinated versus nonvaccinated children showing they had comparable numbers of children with the condition. It would seem that this argument is somewhat of an ace in the hole for those who believe that vaccines cause autism, they won't be convinced until such a study is done.
About five years ago during a brief series of email correspondences that I had with Mark Blaxill, he claimed that there were problems with all of the studies done. He stated part of the problem that SAFEMINDS had in trying to dispute the data against their position was that they had nowhere near the resources of the government and ergo had an uphill battle. Mark Blaxill along with SAFEMINDS colleague Lynn Redwood currently serve on the IACC which controls funding and research directions in autism. They still cling to this thimerosal hypothesis which means this will be direction research is headed in part. The fact that these people are chosen to partly run the show most likely means that research into the etiology of autism that could result in finding a cause or even a cure will be greatly hampered.
Yet, how valid is this limited resources argument of Blaxill's? If I am not mistaken his fellow mercury militia members Tom and Sally Bernard have a net worth of upwards $300 million. Rick Rollens when I met him boasted to me how he raised $40 million dollars for autism research by founding the MIND institute largely at California taxpayer's expense. Autism speaks I don't think have assets totalling more than about $20 million. I am not sure of these figures but even if you want to give a more conservative estimate that the MIND institute and autism speaks have combined assets of about $100 million then this still might be less than a third of the Bernard family's total assets. Anyone can correct me about any of these figures if I am wrong or grossly overestimating the Bernard's wealth.
Sally Bernard, if you read this, I am going to be a bit blunt. I think you should either put up or shut up. I think you and your husband Tom should fund that study of vaccinated versus nonvaccinated children and present the results to peer review. I am not talking about a journal like medical hypothesis where you published your autism novel form of mercury poisoning all those years ago, nor all of the amateurs including yourself who were involved in writing this and providing the data. I am talking about a real controlled study with hired professional scientists published in a much less speculative journal than medical hypothesis. I think you can afford to fund such a study. In the event that you can show much lower rates of autism in nonvaccinated children, all the power to you. If not, then maybe this issue can be settled once and for all. Perhaps you and Tom could pick up the tab for this study.
Wednesday, September 10, 2008
My letter to the interagency autism coordinating committee
Hello, I am a high functioning autistic male who wants a cure for autism. I am responding to your requests for information by September 19 as per your request. I was wondering if the lauren Mottron lab receives funding by the NIMH and under the combating autism act? If so I believe their funding should be discontinued as they have at least one person who undermines the nobel effort to find a cure for autism. This person has written an essay implying that people who want to cure autism are intolerant bigots. Also there is an autism researcher named Morton Gernsbacher who wrote an essay, autistics need acceptance and not cure and makes unfounded statements that severely autistic people have made great contributions to the arts and sciences. I was hoping that her funding would also be discontinued and that she will no longer be allowed to peer review scientific articles that have been funded under the combating autism act.
Also, I believe that Mark Blaxill's and Lynne Redwood's membership on the IACC should be discontinued as these two cling to the disproven hypothesis that thimerosal causes autism and will only impede advances into finding a cure for this disorder, much thanks.
I realize this will probably be about as effective as writing a letter to Santa Claus but at least I was able to get my frustration over people who I believe are undermining a cure off my chest. I might at some point write the IACC about ideas I have for research rather than trying to do something about certain individuals who I feel undermine the effort to prevent and cure autism. Some people may feel I am engaging in a personal attack or being vindictive but this is not the case. Though I have not worked in a while I have paid probably more in taxes than the vast majority of those on the autistic spectrum (this of course excludes neurodiversity "asperger's persons" who decided well into adulthood that they had an ASD after finding out their child had an ASD) so I feel that I have a right to give some input on these individuals. I have really suffered as a result of my ASD and if people think I am a bad person for writing this letter to the IACC and posting this publically and naming certain individuals in my email so be it.
Thursday, September 4, 2008
Another ASD sufferer writes anti-neurodiversity essay
Monday, September 1, 2008
Effie Linares, Lovaas success story?
But is this really a success story? The article does not really give a clear before and after picture of the boy's functioning level, other than talking about how at one time he went ballistic when other people touched his Disney videos which at age 11 he no longer does. But what proof is there that natural maturity just caused him to outgrow this behavior and there was no casual relationship between the 40 hour per week Lovaas treatment and an end to this behavior? Also, the article states that he was mainstreamed since the age of 5. It is possible he was always quite high functioning relative to other autistic children. We can't really tell anything from the article.
Lovaas claimed in 1987 that nearly half of his best outcome subjects in the experimental group had completely normal functioning, in other words, no one would possibly know that they were autistic or had ever been autistic. Is this the case for Effie? The answer would appear to be no from a read of the article. He still has a shadow that aides him in his class so the mainstreaming is not 100% and does not jibe with the Lovaas best outcome subjects who had no aides or shadows. Effie's father also has to work the night shift in order to volunteer in the school to help out his son. To me, this does not sound like normal functioning or a complete success story. Effie's teacher also states that he says and does things that show he is different to the other kids, so it would seem that this boy is not indistinguishable from his peers. The article neglects to talk about his academic performance in relation to the other children in his class.
Most pertinent of all, what will happen when Effie becomes an adult? Will he be able to hold down a job, date women? As an autistic adult who by most standards is very high functioning, I have had no success in finding a girlfriend and though I worked sporadically for nearly 28 years, I finally gave up the ghost it was so difficult and I had such a hard time in the work place. I have written in the past about the lack of acknowledgement of the existence of autistic adults and how we are not Peter Pans. Someday we will grow up and have all of the issues of adulthood to contend with, just like Neurotypical persons. Of course no one is thinking of what might happen to Effie and other success stories when they become adults. No adult outcomes, have ever been published in the peer reviewed literature of autistic children who have undergone ABA. The informal presentations at conferences, while seemingly a shoddy standard of science, have been used to claim successful adult outcomes and provide cost-benefit analyses of ABA as a treatment.
Even as far as anecdotal success of ABA as an autism treatment, the oldest success story that I am aware of is that of Drew Crowder written about in the book Autism from Tragedy to Triumph. He is in college when we last hear about Drew. I have yet to hear of any adult success stories even though the children in the 1987 study are now probably about 40, some possibly older.
The playwright Bertolt Brecht said that those who laugh have not been told the terrible news. Though this is something that parents of autistic children don't like to think about, the the stark reality is there.
Thursday, August 28, 2008
Donna Williams profound comments on neurodiversity
I was very pleased to read some very good common sense notions of hers on neurodiversity that I agree with. Though I am not sure if she agrees with everything that I believe about neurodiversity I totally agree with the following statement:
I think the ND idea is also based on the presumption that others are NT, or neuro-typical, which I don’t believe. Non-spectrum people are really diverse in their own right and all humans are atypical in some way. When I sit with those fixated on so called NT stereotypes, the stereotypes are represented by movie characters and celebrities in gossip magazines but don’t actually hold up in a large percentage of general society. Yet is one self isolates on the presumptions of a THEM and US reality, soon enough the stereotypes become unchallenged, presumed realities. And built into the term NT is a supremist view that all great advancements in society were only and ever due to those who were Neurodiverse. Well Hitler was also pretty atypical, so was Stalin, Pol Pot, Mao. It’s a matter of who one chooses as one’s icons. And one could be fairly typical yet out of need, accident or default, have a remarkable discovery, invention, innovation which even surprises themselves. So I think the political camps are very populist, at times supremist in their stance, and I just don’t do wars.
This is a very profound statement and I thank Donna very much for making it (thanks if you happen to read this, Donna).
Especially enlightened was the Hitler metaphor. Hitler's behavior could have been considered autistic. He certainly was a loner in his youth, high school dropout, outcast from society. Yet he does not make the neurodiversity list along with Albert Einstein, Bill Gates and Thomas Jefferson. I wonder why?
Also, are any two brains exactly alike? Therefore there is diversity among NTs as well as among individual autistics. If the hypothetical cure for autism could happen would it mean that everyone would be the same, one size fits all, no. Absolutely not, we would still have real neurodiversity. Not the scam and the cult that so many embrace as their opiate.
I hope to see more good statements from Donna Williams, particularly about the neurodiversity movement.
Monday, August 25, 2008
amazing, ASAN may actually be doing something useful
The Behavior research institute used to operate in northern Los Angeles near where i live. However, they left California after the Hughes act was passed by the California state legislature in 1991 outlawing aversives in the state of California. They left and went back east where for some mysterious reason, the use of aversives including extremely painful electric shocks on autistic children is still legal.
What ABA enthusiasts won't tell desperate autistic parents looking for help for their kids is that the study by lovaas showing ABA as an effective treatment was entirely contingent upon aversives. This was the key ingredient that made the difference in the alleged "normal" functioning that was produced in half of the children. So ABA without aversives is being marketed dishonestly. Unfortunately, this won't be part of the debate on JRC. I think Lovaas also stopped using aversives in his research altogether after the Hughes act was passed. If it were not passed, perhaps aversives would still be a component of ABA research in California.
In the past ASAN has been involved, in my opinion, in some silly activities. Like getting the ransom notes thing pulled, which did nothing to help autistic people. I mean who cares if someone is saying as advertising we are taking your kid hostage and what a waste of time to put an effort into stopping this activity.
Also ASAN is protesting the slur "retard" used in the movie tropic thunder in a nonmalicious manner. They also collaborated with neurodiversity proponent Kent Adams (AKA ChristSchool) to make a video protesting the use of the word in a nonmalicious manner. This is in spite of the fact that Mr. Adams also produced a video Marty Murphy: House Autistic to criticize autistics who long for a cure. This video was a bunch of malicious hate mongering crap and reduced ASAN's credibility. Tropic Thunder is a huge box office success, so perhaps their relationship with Mr. Adams backfired on them. I hope so. Well the boycotts of the movie were ineffective in any event.
I looked at ASAN's web page and did not find anything about Ari's trip to Israel or his efforts to stop expansion of the JRC. I hope that ABFH is correct about this. If true I am glad that ASAN is finally doing something useful for a change.
Friday, August 22, 2008
Disclosure in the workplace for autists, is it helpful?
Among the many simplistic answers given by neurodiversity proponents is one ND person who claims that if people did not get the idea that autistics were toxic waste dumps and people did not get the impression that autistics were bad, then employers would hire them and they would not have problems in the workplace. This solution is akin to disclosure. It is one of the simplistic solutions that neurodiversity people offer that makes their movement so dangerous.
What if someone were to apply for a job and tell the prospective employer that they had an ASD. What are the chances they would be hired? The interviewer would realize that if the person feels a need to disclose their disability there must be something wrong with them. One argument made for disclosure is that some autistics may have sensory problems, like certain bright lights affecting them, or certain perfumes or other things with a distinct odor that co-workers might use that would be a bother to the autistic employee. What are the chances of the whole office accommodating them? Also, if the accommodation were minor and did not put too much of a burden on the company, it is possible the person could just say, they might like to work in a room without bright lights. Assuming the autistic person's deficits were so mild that they had no other liabilities, then this might be all that is necessary without telling them about the specific diagnosis of autism.
If the person with autism has trouble concentrating and makes an above average amount of errors, who would think that the employer would make accommodations for this just because the person has autism? This is certainly not realistic. What if it was a job for which is usually not the forte of an autist, for example sales jobs where there is a lot of social interaction and behavioral issues involved. If they are not competent at this job due to autism, is it realistic to think this will be overlooked when disclosure is done?
What if the person in spite of their autism was just as competent or even more competent at doing the job as the NT? They might ace all of the pre-employment tests. Certain idiosyncracies that they have might not come out in the wash right away. Their problems might not be terribly overt at first blush. Then they are hired to do the job. They are an incredibly good worker. Perhaps the best worker in their office. But they talk in a very loud voice. They demonstrate poor social skills when engaging in small talk with their co-workers. They might make "stimmy" movements. They might flap their hands, make strange facial grimaces and scowl at people who might become frightened thinking they were angry. Would knowing this person has autism save them from being fired? I believe the answer is no. The employer might be too polite to tell the person they are being fired for their behavior. They might come up with a completely bogus excuse, for example claiming they are running a productivity study on the employer and then falsifying the study and claiming they are much too slow. This happened to me at one of the jobs I was fired from. If the person has problems with executive functioning and does not shower properly or have proper hygeiene, will their foul B.O. be tolerated just because they have autism, again, no.
These things should be common sense to anyone in the autism field or to any person who knows anything about what happens in the workplace to autistic people. Those not on the spectrum have never walked a millimeter in my shoes let alone a mile. They have no notion of what happens to us in the workplace and how hard these things are. Some of these people can only give "an ivory tower" analysis of the situation.
Disclosure is still given as a quick fix simplistic answer. It misleads persons with autism and their loved ones that there is an easy way out. Some of these might be very mildly 22 year old autistic kids (at nearly 53 i consider someone 22 a kid) who have never been in the workforce and whose relatives are not autistic so they don't understand. They will think it is okay to disclose their diagnosis. They think it will not matter to the employers. They are mistaken. This is a dangerous mode of thought.
I admit I have no alternative to disclosure as an easier answer for those on the spectrum, but for those who are old enough to remember the old Hannah Green story, autistic persons were never promised a rose garden.
Tuesday, August 19, 2008
Secretin: The Controversy Continues
Another treatment, Secretin, which ten years ago was one of the flavors of the month as an autism remedy seemed to be in abeyance over the past couple of years or so. Recently ARI director, Steven Edelson, who took over after autism icon Bernard Rimland passed away has writen an editorial on ARI's website trying to revive interest in this treatment as a line of autism research: http://www.autism.com/treatable/drug/secretin_org.htm. As regular readers of autism's gadfly will remember, I posted about this a couple of postings ago.
I emailed Dr. Edelson and pointed out that I had responded to his editorial, which the age of autism webpage had linked to. He seemed rather upset and felt that I had not been entirely honest or perhaps had not read the editorial carefully. He felt I should apologize to him and the readers of this blog.
Though I did not entirely agree with him he may have had some valid points. I said that he had stated that secretin was one of the most promising treatments ever. He said that he only felt that more research needed to be done to see whether or not this would be an effective treatment. Though the title of his editorial inferred that secretin was a promising treatment. He said that it had the potential to be one of the most effective treatments for autism without using the word 'ever' This did confuse me and maybe I was mistaken about that, but he did seem to me to think that there was more than just a need to do research and this might be a viable treatment. I also commented on Janet Kern whom he had stated had shown evidence that secretin was an effective treatment for autism. I had discovered that she had collaborated with James Adams, a member of the board of directors of ARI and she might have a connection with Edelson. He seemed to think I was implying something dishonest was afoot. He did admit to me that ARI had funded at least one study that Kern had done and that they had every right to do so. I agree. However, connections between a funder and a fundee need to be known as the parties may not necessarily be disinterested parties, this is just my opinion. I don't know what Dr. Kern's interest, financial and otherwise at the current time might be in Secretin or who else if anyone besides ARI funds her research. However, one thing I was able to find on the internet was that according to journalist Arthur Allen, Victoria Beck (the person whose son was the first anecdotal report of a person helped by secretin) and Bernard Rimland sold the patent for secretin to the drug company Repligen, who was first seeking out FDA approval for its use in treatment of autism and schizophrenia for one million dollars and about $700,000 of this went into ARI's coffers: http://www.salon.com/health/log/1999/12/09/secretin/print.html this same article states that after the one company that manufactured porcine secretin stopped producing it supplies dried up and secretin was being sold at prices as high as $15,000/vial. ARI does have the right to fund whom they want, I agree and Dr. Kern's findings have been published in the journal of autism and developmental disorders where the interested reader can judge for themselves the validity of her findings. I will have more to say about her findings later and I will apologize if there was any misunderstanding. Still, this is not the end of the story. There is still more stuff about this controversial substance.
Another thing I did not understand in the last post was that Steve was commenting on the fact that most if not all of the multiple studies that had refuted the evidence of secretin as a promising autism treatment had only used one dose of secretin and there was a need for more multiple dose studies before the final verdict on secretin was in. This was in addition to his statement that porcine (organic secretin extracted from pig intestines) was different chemically than the human synthetic secretin that was used in some though not all of the studies that refuted secretin.
I found one article and an abstract of another article on the internet in which multiple doses of secretin were administered: http://pediatrics.aappublications.org/cgi/content/full/107/5/e71
As far as I could tell Steve had not read these articles. He said that he would try to go to the research library the following morning and write an updated editorial for ARI and let me read it first. I still have not heard back from him. He also told me about someone named Cindy Schneider who had done a study showing that in a higher dose than usually given secretin had shown some results in persons with autism. As far as I could tell, from looking at the web, back issues of ARI's newsletter on the web and doing a pubmed search, this lady had never actually published her findings in a peer reviewed journal but rather had just presented them informally at a conference. If Steve or someone else will ever show me where Cindy Schneider has published in a peer reviewed journal, I will write an update.
I decided to do a bit more research. I read the article by Sandler which appeared in NEJM many years ago, He did acknowledge that his study used synthetic secretin rather than porcine secretin and the fact he only used a single dose, and that further work was needed to elucidate this. On doing my research I found that there had been studies by someone named Crist which appeared in a GI journal showing that the two different secretins have similar modes of action and effects in the body in spite of the fact that they have slightly different molecular structures, differing by two amino acids. It was conceded that this difference in molecular structure might mean they had different effects, but there was no evidence to show this.
One of the problems I have with the single dose thing is that the anecdotal reports of Parker Beck's improvement, the uncontrolled study involving three children published by Horvath, and Janet Kern's study showing improvement in a small percentage of the children in her study all involved a single dose of secretin. Therefore, this might preclude the argument that research with more than one dose of secretin is necessary. There have been studies showing secretin in mutliple doses is inefficacious, but more on that later.
In Kern's study the only children for whom secretin seemed to have any benefit were for those who had chronic diarrhea. What percentage of kids with autism who have chronic diarrhea is unknown. In one study, Karin Nelson even refuted that there was any relationship between GI symptoms and autism. Though, I think there are other studies that refute that. Apparently the relationship between autism and GI symptoms is not clear. Therefore, this would seem to dispute Steve's contention that secretin really has any potential for the vast majority of autistic persons. In his editorial he neglects to state that this might have potential only for a small subset of autism and in his comments on Kern's study, he does not mention the fact that the subset of children who had improved were unique in that they had chronic diarrhea and that Kern conceded secretin would only be helpful for a small percentage of those on the spectrum.
Also there was a report by someone named Sturmey who reported on the 15 controlled studies all of which had found secretin to be ineffective in the treatment of autism. I could not find this report on the shelves at the UCLA biomed library.
However I did find another report that had been published about a year earlier in 2004by Barbara Esch and James Carr on the research literature on secretin and autism. This was published in the Journal of Autism and Developmental Disorders. They talk about multidose secretin studies. In one of the studies done by Roberts which I think I linked to earlier, Steve E. claimed that the dosage was too low to get any positive results. He stated that Schneider, who I mentioned earlier had failed to get the same results from her work. But then got positive results after administering a higher dose, which was a single dose that Steve said he objected to before. As I mentioned before, I don't think Cindy Schneider's work has ever been published in a peer reviewed journal.
Also Sponheim et. al. have done a study involving multiple doses of secretin, I think I linked to the abstract of this study. These dosages were higher per kg of body weight than other studies involving secretin which would answer steve's concerns about dosages in the Roberts multidose secretin study.
Another issue that is addressed in this paper is that it is not known whether secretin crosses the blood-brain barrier in humans, though there is some suggestion that it might as there was a study showing it crossed the BB barrier in mice. However, if it were found that secretin did not cross the blood-brain barrier in humans this would probably negate its use as an autism treatment.
Another issue, that I mentioned in the previous post is that continued injections of porcine secretin may be dangerous because of an immunologic response to pig matter. Also, there is the question of those who promote multidose secretin as a treatment for autism, showing there is no danger. Secretin is currently used in single doses as an adjunct in GI procedures. I think this is the only use that has been approved by the FDA so far. It is not known whether multiple injections of even human synthetic secretin would not be dangerous to autistic children.
For these reasons I think caution should be exercised.
Though Steve seems to be implying that more research is needed to determine whether or not secretin is effective, i am not sure if he feels that way about the DAN protocol. If any of the DAN protocol (aside from the megavitamins which I think were published in some places) has been published in the peer reviewed literature, I am not sure what it is. Steve claims that 20% of all autistics that undergo the DAN protocol can become recovered. He uses the analogy of someone being hit by a car, and then undergoing physical therapy, and then just maybe walking with a slight limp so that you would never know they had an accident. He says that this is different from a cure, but seems to imply that these 20% responders can function pretty much normally in any way though may have some subtle differences.
I don't think any studies on secretin have been published in the past few years. If Steve can stop interest from waning and ARI or someone else funds more studies I will await the results. Though it does not seem to me based on what has been published that secretin has any promise whatsoever. As said before, there is certainly no evidence suggesting it has promise for any autistic person other than those who have chronic diarrhea.
There may be more updates in autism's gadfly about the fascinating saga of secretin so stay tuned.
Am I just using autism as an excuse?
This thinking is not unique to her, it seems pretty pervasive throughout the adherents of the neurodiversity movement. Michelle Dawson seems to imply that the only reason autistics have bad outcomes is societal. If autistics were not discriminated against they would do as well as others. We also have Larry Arnold who makes analogies with a work of fiction, The Country of the Blind showing that autistics could function well if given the necessary accommodations. We have Ari Neeman and the rest of ASAN who claim they are opposed to a cure, a cure is not necessary because being anti-cure is not anti-progress. Their solution to the problem is to take umbrage at every perceived slight that happens to autistic people. Therefore the campaign against NYU's ransom notes ads and criticizing the film tropic thunder for using the word 'retard' in a non-malicious manner are somehow progress.
I posted a comment to her asking her to please be more specific. Just how can these problems be solved. Similarly to the rest of her neurodiversity colleagues she neglected to give specific answers. However, there is some very good news for persons affected by autism who feel they suffer tremendously from their or their loved one's autism. All one has to do is go to the neurodiversity forums Aspies For Freedom and Wrongplanet.net and post exactly what the specific problem is. One of the other posters there will have a solution. I can't get over what wonderful news this is for parents, who have to pay many thousands of dollars for ABA treatments, DAN protocols, special Ed attornies to pursue claims under the IDEA that they feel will help their child with autism etc. All of this great expense and effort is absolutely unnecessary. Someone in one of these two forums will have the solution as to what to do. They will post it on the internet for you free of charge. No need for any of these expensive treatments. Autism speaks can now disband, they don't need to do walks to promote fundraising. This is just wonderful news :).
It is such a shame that there was no internet, no aspies for freedom and no wrongplanet.net in the 1960s to guide my parents when they were looking so hard for a cure for me that was unnecessary. They would not have needed to pay for private special education schools, occupational therapists and expensive psychoanalysis. All they would have had to do was post on one of these two forums and one of the geniuses there would have come up for a solution to my problems for which autism was obviously not responsible for.
This sort of thinking is why I have in my motto "We Don't need no stinkin' neurodiversity". This kind of dangerous thinking is why I urge people to just say no to neurodiversity here http://www.jonathans-stories.com/non-fiction/neurodiv.html.
I still remember the outrage at Michael Savage's comments about autism not being real and 90% of autistic kids being just brats and people using their autism as an excuse to collect government benefits.
Is Chaotic Idealism's post so much different from Mr. Savage's? I don't think so. Will there be the same outrage at her comments, I wonder.