I just read an interesting entry inDonna Williams blog just now. I have never been a fan of Donna Williams. I read Nobody Nowhere many years ago, a brief time before it was published in the U.S.A. I obtained a copy published in England from David Miedzianik in the early 1990s. I did not feel the book was very well written and had a hard time understanding how it became a best seller. I was also skeptical that Donna really had autism. Her symptomatology sounded far more like a multiple personality disorder such as was in the book Sybil, popular back in the early 1970s.
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.
Thursday, August 28, 2008
Monday, August 25, 2008
amazing, ASAN may actually be doing something useful
I read an interesting blog entry by autism bitch from hell of the whose planet is it anyway blog. She writes about how the Judge Rottenberg Center run by the notorious Matthew "Dr. Hurt" Israel is meeting with some persons in Israel and is trying to set up shop in that country because of threats of the state of Massachusetts and other places banning the use of the electric shocks and other aversives Dr. Israel uses to treat children. The ABFH also stated that ASAN president Ari' Neeman was in Israel, trying to talk to the powers that be hoping that they would not allow the doctor whose name is coincidentally the same as the country's to hang out his shingle there. The Judge Rottenberg Center was formally called the behavior research institute. This is a rather ironic misnomer as Dr. Israel apparently has never submitted any of his work to peer review as far as I can tell. In one of the issues of JADD they state that Dr. Israel was expelled from the autism society of america for practicing clinical psychology without a license.
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.
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?
Today I read a blog entry by Zach Lassiter whose claim to fame was the Zazzle t-shirt fiasco where autism speaks was wrongly accused of trying to block his t-shirt that was unflattering to them. He writes aboutproblems with his work. One of the things he writes about is the fact that his employer knows about his autism spectrum disorder. Yet disclosure of his disability has not seemed to have helped this young man with his work problems. Disclosure of a diagnosis is given as a solution to the problems of employment for persons on the autistic spectrum. I tried this one time in the past and it still resulted in my getting fired from a job. Michelle Dawson also did this with her employer Canada Post and apparently it cost her the job she had with them and I think she has been litigating this for a number of years. Also, I know of one computer programmer whose disclosure did not help. Another person whom I knew who worked in a public sector job whose autism caused them serious anger management problems and social judgment impairments. Because of poor social judgement he used the computer for unauthorized uses, had numerous angry fights with the boss and was transferred to a mail room position within the organization where he had no access to an email account or computer. The pressures he experienced finally forced him to resign. Had he been employed in the private sector he would have been fired. They were aware of his diagnosis when he was hired. Disclosure did not help him.
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.
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
Mark Twain once said that the reports of his death were grossly exaggerated. Twain's words certainly ring true for proponents of various autism theories and treatments. After years of studies of refuting thimerosal and vaccines as a cause of autism, this hypothesis is still not allowed to rest in peace and is kept alive by those who believe in it.
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
http://www.jrnldbp.com/pt/re/jdbp/abstract.00008480-200306000-00020.htm;jsessionid=LrmPTLSJpyP0TpGMC8v02p3Vnr19ChYRnvcSmBnv3Pmvwsx2mb86!-1124491571!181195628!8091!-1?nav=reference
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.
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
http://www.jrnldbp.com/pt/re/jdbp/abstract.00008480-200306000-00020.htm;jsessionid=LrmPTLSJpyP0TpGMC8v02p3Vnr19ChYRnvcSmBnv3Pmvwsx2mb86!-1124491571!181195628!8091!-1?nav=reference
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?
Well I see that yet another autism hub blogger, neurodiversity proponent has once again gone over the top. In a blog post entitled Don't Blame Autrism(sic) here, http://chaoticidealism.livejournal.com/48892.html she seems to imply that my problems with having been fired from multiple jobs and being forced to retire at a relatively young age, never having a girlfriend when I am over 50, fine motor coordination and perceptual motor problems that greatly impair my handwriting and ability to do other perceptual motor and fine motor tasks (excluding typing though) and my irrational phobia of birds, my uncontrollable self-stimulatory movements which have precluded me from having very many friends and have even gotten me into trouble with my neighbors as well as certain law enforcement agencies are not the result of having an autistic spectrum disorder. There is some other explanation for them and I am just using my autism as an excuse. We need to look at the problem she says and try to find solutions for them and stop blaming autism. Autism is just an excuse apparently. This apparently also goes for parents of autistic kids. I presume this includes very severely autistic children who cannot speak, bang their heads into walls and elope and sometimes get run over by cars and drown. Autism is not responsible for this, it is something else and all we have to do is look at the problem and come up with some sort of solution. She takes a shot at biomed claiming this causes an addiction to biomed for parents who I guess follow DAN protocols. Though I doubt these treatments are helpful myself, I can understand why a parent would want to do them for their child, she seems to think there is something wrong with this and this does not need to be done. There is another solution someplace.
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.
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.
Thursday, August 14, 2008
Use of the word retard in my short story, Mr.Twiddle
The repeated use of the word 'retard' in the recently released movie, Tropic Thunder, has created a figurative hornet's nest amongst the developmentally disabled community. Autistics in the neurodiversity groups and the parents in the pro-cure camp with whom they are usually at loggerheads with have found a common cause celebre'. Some have gone so far as saying that the word retard, should not be used in art in any context. Certain persons have called for having the scenes from the movie cut that use this foul slur. One person has even gone so far to say that Ben Stiller should donate money to the special Olympics as compensation.
Even the infamous John Best has entered the fray. Instead of referring to those he disagrees with as neuronitwits or neuroinsane, he has now started to call them retards. He seems to think he has found a more effective way of baiting those he has so much contempt for.
Because of all of this, I have a rather shocking confession to make to all of the readers of autism's gadfly. 14-1/2 years ago I wrote a short story entitled "Mr. Twiddle". This story uses the word 'retard' multiple times. Also the expression RETARDS 'R' US in red bold faced letters was also used in the story. The story is on my jonathans stories website: http://www.jonathans-stories.com/stories/twix.html for the interested reader. The story deals with the problems of a high functioning autistic boy and whether or not he can be mainstreamed in regular school, I won't go into the rest of the story as some reader of autism's gadfly may actually give a shit and want to read it and I would not want to ruin it for them. The point is, my use of the word retard was done as an art form to show how nasty and cruel typical children can be to those with developmental disabilities. I realize the situation with Tropic Thunder is different and the word retard is not used with this type of literary device in mind, though I don't think Ben Stiller was trying to defame the developmentally disabled in any way. However, some of these people feel the word retard should not be used in any context. I beg to differ. I believe that sometimes literary devices like this are necessary to prove a point. If I had used the expression, 'geek' or even 'autistic geek' for example it would not have been as powerful a device in the story.
A number of persons have read it and though a few did not seem to care for the story. I did get some positive reactions from a number of people. No one has yet objected to my use of the R word in the story. One of those readers of Mr. Twiddle was from someone in the neurodiversity movement calling (I think herself) Ventura who has a fiction web page. She emailed me and wrote me that she liked my story very much and wanted to publish it on her page even though she realized I had a low opinion of the neurodiversity movement. I said that sure I would be happy to have her publish it if she wanted, I am willing to have a civil relationship with persons in the neurodiversity movement and others even though we may disagree on some things. So this is another shocking confession I have to make, I agreed to have someone from the neurodiversity movement publish a story on their web page. She did not seem to mind that I used the expression retard in the story. I would think if this were offensive, she of all people would have objected. A few others have emailed me telling me they enjoyed the story. These were people on the spectrum, some of whom I think at the very least had a neurodiversity leaning. So one has to wonder why if using retard in any context should be verbotten then why were they not offended.
I submitted the story to about 9 or 10 magazines and every single one of them rejected the story. However, I did get some positive reactions from a couple of the rejectors. I sent the story to one publication, Glimmer Train Stories, which is considered pretty top tier in the short fiction publication world. The editor wrote on the rejection slip, "quite a moving piece, enjoyed it thank you". The Michigan Quarterly Review was having a special issue devoted to disabilities. I suspect these people would not have wanted a story that defamed disabled people in any way or would not have made any positive comments. Though they also took a pass on the story, they said that the way that I presented the cultural attitudes towards the autistic were compelling but in my writing I should pay attention to characterization of my characters as well as how a story unfolds from beginning to end.
All of these things compel me to believe that there are at the very least exceptions to the rule where certain words can be used in a certain context as part of an art form. The use of the word nigger in Huckleberry Finn and the fact that this book is used with great frequency in high school and college literature classes in spite of the N word is one example. The novel The Catcher in the Rye uses flit as a pejorative term for a homosexual, but apparently gay rights groups are not trying to remove this classic from the bookshelves at Borders' and Barnes and Noble.
Do I have apologies, regrets for using the R word in my writings. Definitely not, certainly not in the context that it was presented in. If anything I was trying to show how demeaning society can be to challenged children. I might even do it again sometime.
Even the infamous John Best has entered the fray. Instead of referring to those he disagrees with as neuronitwits or neuroinsane, he has now started to call them retards. He seems to think he has found a more effective way of baiting those he has so much contempt for.
Because of all of this, I have a rather shocking confession to make to all of the readers of autism's gadfly. 14-1/2 years ago I wrote a short story entitled "Mr. Twiddle". This story uses the word 'retard' multiple times. Also the expression RETARDS 'R' US in red bold faced letters was also used in the story. The story is on my jonathans stories website: http://www.jonathans-stories.com/stories/twix.html for the interested reader. The story deals with the problems of a high functioning autistic boy and whether or not he can be mainstreamed in regular school, I won't go into the rest of the story as some reader of autism's gadfly may actually give a shit and want to read it and I would not want to ruin it for them. The point is, my use of the word retard was done as an art form to show how nasty and cruel typical children can be to those with developmental disabilities. I realize the situation with Tropic Thunder is different and the word retard is not used with this type of literary device in mind, though I don't think Ben Stiller was trying to defame the developmentally disabled in any way. However, some of these people feel the word retard should not be used in any context. I beg to differ. I believe that sometimes literary devices like this are necessary to prove a point. If I had used the expression, 'geek' or even 'autistic geek' for example it would not have been as powerful a device in the story.
A number of persons have read it and though a few did not seem to care for the story. I did get some positive reactions from a number of people. No one has yet objected to my use of the R word in the story. One of those readers of Mr. Twiddle was from someone in the neurodiversity movement calling (I think herself) Ventura who has a fiction web page. She emailed me and wrote me that she liked my story very much and wanted to publish it on her page even though she realized I had a low opinion of the neurodiversity movement. I said that sure I would be happy to have her publish it if she wanted, I am willing to have a civil relationship with persons in the neurodiversity movement and others even though we may disagree on some things. So this is another shocking confession I have to make, I agreed to have someone from the neurodiversity movement publish a story on their web page. She did not seem to mind that I used the expression retard in the story. I would think if this were offensive, she of all people would have objected. A few others have emailed me telling me they enjoyed the story. These were people on the spectrum, some of whom I think at the very least had a neurodiversity leaning. So one has to wonder why if using retard in any context should be verbotten then why were they not offended.
I submitted the story to about 9 or 10 magazines and every single one of them rejected the story. However, I did get some positive reactions from a couple of the rejectors. I sent the story to one publication, Glimmer Train Stories, which is considered pretty top tier in the short fiction publication world. The editor wrote on the rejection slip, "quite a moving piece, enjoyed it thank you". The Michigan Quarterly Review was having a special issue devoted to disabilities. I suspect these people would not have wanted a story that defamed disabled people in any way or would not have made any positive comments. Though they also took a pass on the story, they said that the way that I presented the cultural attitudes towards the autistic were compelling but in my writing I should pay attention to characterization of my characters as well as how a story unfolds from beginning to end.
All of these things compel me to believe that there are at the very least exceptions to the rule where certain words can be used in a certain context as part of an art form. The use of the word nigger in Huckleberry Finn and the fact that this book is used with great frequency in high school and college literature classes in spite of the N word is one example. The novel The Catcher in the Rye uses flit as a pejorative term for a homosexual, but apparently gay rights groups are not trying to remove this classic from the bookshelves at Borders' and Barnes and Noble.
Do I have apologies, regrets for using the R word in my writings. Definitely not, certainly not in the context that it was presented in. If anything I was trying to show how demeaning society can be to challenged children. I might even do it again sometime.
Is Secretin an effective treatment for autism?
I see that my friend Steve Edelson, who took over the ARI after Bernie Rimland passed away is promoting secretin as an effective autism treatment over at http://www.ageofautism.com/. I have met Steve at a couple of the national ASA conferences. He was very nice to me and I like him personally, but I still question a lot of positions and treatments that ARI proposes. He bills secretin as one of the most promising autism treatments ever.
Secretin is a hormone that appears in the GI tract and is involved in aiding the process of digestion. It also appears in the brain. As Steve points out, there are studies showing that it appears in parts of the cerebellum and hippocampus and limbic system, areas that have been implicated in the etiology of autism.
Steve cites the initial anecdotal evidence of the effectiveness of secretin in this boy named Parker Beck, and the uncontrolled subjective observations of this boy's improvement. He then mentions a pharmaceutical company which got the rights to the patent of synthetic secretin, which was cheaper to make than the secretin which was extracted from the duodenum of pigs. For some reason, I don't understand, Steve implies that somehow the molecules of the secretin extracted from pigs is somehow different from the kind that can be synthesized in a lab. Maybe someone with more erudition in chemistry than I have can explain to me why the organic secretin would be vastly different than the synthetic variety in its alleged effects on autism. The drug company did some studies using these two different subjective autism rating scales and determined that secretin was not effective overall. Yet when a subset of high functioning autistics were assessed it was found that they had made statistically significant improvements on one of the ratings but not on the other. Steve goes on to define the statistically significant changes on only one but not both of the rating scales as having "improved dramatically".
He then goes on to make the claim that the owner of the pharmaceutical company had a conference telephone call with the company's stockholders claiming that several of the children in the experimental group went from autistic to normal (italics added). How 'normal' was assessed in this alleged phone call I have no idea. As far as I can tell the only measures used in this drug company's study were two autism rating scales. No standardized tests were used to assess the children after the porcine (from pigs) secretin was used, no reports of scholastic placement, and certainly no adult outcomes, how they fared in jobs, heterosexual relations, etc.
Finally Steve tries to show the need for further research on secretin. He cites a study done by Janet Kern in Texas who found that about a quarter of the autistic children in an experimental group who received the porcine (non-synthetic) form of secretin improved in some of their behaviors, in terms of throwing less tantrums and having an improved vocabulary. The only children in Kern's study for whom the secretin seemed to be effective were those with GI problems. Secretin was no different than a placebo for autistic children without GI problems.
It is interesting to note that Kern in a more recent study on heavy metals in the etiology of autism has collaborated with ARI board member James Adams, so it would appear she has some sort of connection to Steve Edelson himself.
Though Steve calls for more research to be done on secretin he neglects to address in his piece the fact that numerous controlled studies have been done showing secretin to be ineffective as an autism treatment.
In a study done by Sandler, et. al in the New England Journal of Medicine a comparison was made between 28 children with autism injected with the synthetic version of secretin and 28 controls. The authors noted no difference between the two groups.
Another study published by Chez in the annals of neurology also showed that secretin was ineffective as an autism treatment.
A review showing 15 studies showing secretin to be an ineffective treatment are reviewed here: http://www.ncbi.nlm.nih.gov/pubmed/15590241?dopt=Abstract
So far as I know, besides Kern's study, the only other published report of secretin being an effective autism treatment was produced by someone named Hvorth published in an obscure publication entitled the journal for the association of academic minority physicians. This study was an uncontrolled study involving only three children.
Steve Edelson really fails to address or mention or critique any of these studies that refute the evidence that secretin may be a worthwhile autism treatment and that further research into secretin as one of the most promising autism treatments should be pursued. As far as I can tell his only criticism of these studies is that they used synthetic secretin rather than the porcine secretin that was extracted from pig intestines. He does not mention why the porcine version would be more effective than the synthetic version or chemically what the difference is. Even in Kern's porcine secretin study, a very small minority of the children improved and only those with GI problems. Out of all the persons with autism in the world, what percentage have these GI problems. Steve does not address this point. Another possible reason that synthetic secretin is used rather than the porcine version is that introducing a substance from a pig could cause the human immune system to have an adverse reaction. Though I will admit I am not an expert in this, it seems to me that it would make sense that because the human immune system would treat this as some sort of foreign agent, treatment with the pig secretin could be harmful to autistic children. Is it possible that after reading this article on the age of autism web page, some parent whose autistic child does not have a GI problem may end up seeking secretin as a treatment. Parents of autistic children are desperate people and easily exploited, so this does present a problem for me. There seems to me no evidence that secretin is a legitimate treatment for autism.
Secretin is a hormone that appears in the GI tract and is involved in aiding the process of digestion. It also appears in the brain. As Steve points out, there are studies showing that it appears in parts of the cerebellum and hippocampus and limbic system, areas that have been implicated in the etiology of autism.
Steve cites the initial anecdotal evidence of the effectiveness of secretin in this boy named Parker Beck, and the uncontrolled subjective observations of this boy's improvement. He then mentions a pharmaceutical company which got the rights to the patent of synthetic secretin, which was cheaper to make than the secretin which was extracted from the duodenum of pigs. For some reason, I don't understand, Steve implies that somehow the molecules of the secretin extracted from pigs is somehow different from the kind that can be synthesized in a lab. Maybe someone with more erudition in chemistry than I have can explain to me why the organic secretin would be vastly different than the synthetic variety in its alleged effects on autism. The drug company did some studies using these two different subjective autism rating scales and determined that secretin was not effective overall. Yet when a subset of high functioning autistics were assessed it was found that they had made statistically significant improvements on one of the ratings but not on the other. Steve goes on to define the statistically significant changes on only one but not both of the rating scales as having "improved dramatically".
He then goes on to make the claim that the owner of the pharmaceutical company had a conference telephone call with the company's stockholders claiming that several of the children in the experimental group went from autistic to normal (italics added). How 'normal' was assessed in this alleged phone call I have no idea. As far as I can tell the only measures used in this drug company's study were two autism rating scales. No standardized tests were used to assess the children after the porcine (from pigs) secretin was used, no reports of scholastic placement, and certainly no adult outcomes, how they fared in jobs, heterosexual relations, etc.
Finally Steve tries to show the need for further research on secretin. He cites a study done by Janet Kern in Texas who found that about a quarter of the autistic children in an experimental group who received the porcine (non-synthetic) form of secretin improved in some of their behaviors, in terms of throwing less tantrums and having an improved vocabulary. The only children in Kern's study for whom the secretin seemed to be effective were those with GI problems. Secretin was no different than a placebo for autistic children without GI problems.
It is interesting to note that Kern in a more recent study on heavy metals in the etiology of autism has collaborated with ARI board member James Adams, so it would appear she has some sort of connection to Steve Edelson himself.
Though Steve calls for more research to be done on secretin he neglects to address in his piece the fact that numerous controlled studies have been done showing secretin to be ineffective as an autism treatment.
In a study done by Sandler, et. al in the New England Journal of Medicine a comparison was made between 28 children with autism injected with the synthetic version of secretin and 28 controls. The authors noted no difference between the two groups.
Another study published by Chez in the annals of neurology also showed that secretin was ineffective as an autism treatment.
A review showing 15 studies showing secretin to be an ineffective treatment are reviewed here: http://www.ncbi.nlm.nih.gov/pubmed/15590241?dopt=Abstract
So far as I know, besides Kern's study, the only other published report of secretin being an effective autism treatment was produced by someone named Hvorth published in an obscure publication entitled the journal for the association of academic minority physicians. This study was an uncontrolled study involving only three children.
Steve Edelson really fails to address or mention or critique any of these studies that refute the evidence that secretin may be a worthwhile autism treatment and that further research into secretin as one of the most promising autism treatments should be pursued. As far as I can tell his only criticism of these studies is that they used synthetic secretin rather than the porcine secretin that was extracted from pig intestines. He does not mention why the porcine version would be more effective than the synthetic version or chemically what the difference is. Even in Kern's porcine secretin study, a very small minority of the children improved and only those with GI problems. Out of all the persons with autism in the world, what percentage have these GI problems. Steve does not address this point. Another possible reason that synthetic secretin is used rather than the porcine version is that introducing a substance from a pig could cause the human immune system to have an adverse reaction. Though I will admit I am not an expert in this, it seems to me that it would make sense that because the human immune system would treat this as some sort of foreign agent, treatment with the pig secretin could be harmful to autistic children. Is it possible that after reading this article on the age of autism web page, some parent whose autistic child does not have a GI problem may end up seeking secretin as a treatment. Parents of autistic children are desperate people and easily exploited, so this does present a problem for me. There seems to me no evidence that secretin is a legitimate treatment for autism.
Wednesday, August 13, 2008
Displacement: Yet another neurodiversity defense mechanism
For the very few people who have read my writings, they know that in the past I have written about the psychological defense mechanisms, first postulated by Sigmund Freud of denial and reaction formation. I have stated that I believe these defense mechanisms are responsible for the genesis of the neurodiversity movement. Here is a brief recap of those defense mechanisms: Denial is just that, denial. You are trying to convince yourself that the stark reality that is staring you in the face just is not true. This is what compels some (though not necessarily all) neurodiversity adherents to claim autism is not a defect but an alternative form of brain wiring. This is why some of them imply that being autistic is no different than being gay versus being straight, no different than being left-handed versus right-handed etc. The neurodiverse just can't deal with the fact that they or their offspring are defective or broken so they just deny it. Reaction formation is a bit more complicated. It stems from not being able to deal with feelings of something you hate. So you turn that something you hate into something you love. You can't deal with autism, you hate it. For those who watched the Good Morning America segment on neurodiversity, Diane Sawyer said it well, neurodiversity is just a beautiful way of justifying heartbreak. Therefore you try to turn it into something beautiful like Klare Estee Wolfhond (not sure i got her name right) saying that there is joy in autism and having a blog entitled joy of autism. This is why some persons claim that autism is a gift and should not be eradicated. This is why people claim that Bill Gates, Albert Einstein, etc. are/were autistic. For more details on why this reasoning is wrong, I again refer the reader to my essay on the subject, www.jonathans-stories.com/non-fiction/undiagnosing.html on this subject.
Another Freudian defense mechanism that I believe neurodiversity people sometimes use that I did not mention before is displacement. For example, what if you have a job and the boss is being mean to you? You want to tell your boss to fuck off or at the very least sing him your favorite song, Take this job and shove it, for those who remember the old johnny paycheck song. But you're not wealthy, you can't afford to quit your job or be fired, even if the boss is a horse's ass. However, you feel you are going to get a coronary or an ulcer if you have to hold your anger in. You might have children. You can yell at them, even spank them. They are powerless to do anything about it. You might start yelling at your kids because there are no consequences for yelling at them. You are a big guy. You can't punch out your boss without losing your job. You might get drunk and get into a barroom brawl with someone smaller than you instead. You are displacing your anger onto someone else.
Many persons in the neurodiversity movement seem to be quite angry. They are abusive to parents of autistic children who express a desire to cure them. They sometimes call people names like nazi. They are angry about their autism. They have to displace it somewhere. The organization Autism Speaks is a favorite whipping boy. They accuse this organization of genocide. They are constantly nasty to autism speaks and those who are involved in it. They get angry at someone wishing for a cure for autism saying this is the way they are, that a cure would destroy them, when there is not an iota of scientific evidence to support that contention.
Displacement, another neurodiversity defense mechanism.
Another Freudian defense mechanism that I believe neurodiversity people sometimes use that I did not mention before is displacement. For example, what if you have a job and the boss is being mean to you? You want to tell your boss to fuck off or at the very least sing him your favorite song, Take this job and shove it, for those who remember the old johnny paycheck song. But you're not wealthy, you can't afford to quit your job or be fired, even if the boss is a horse's ass. However, you feel you are going to get a coronary or an ulcer if you have to hold your anger in. You might have children. You can yell at them, even spank them. They are powerless to do anything about it. You might start yelling at your kids because there are no consequences for yelling at them. You are a big guy. You can't punch out your boss without losing your job. You might get drunk and get into a barroom brawl with someone smaller than you instead. You are displacing your anger onto someone else.
Many persons in the neurodiversity movement seem to be quite angry. They are abusive to parents of autistic children who express a desire to cure them. They sometimes call people names like nazi. They are angry about their autism. They have to displace it somewhere. The organization Autism Speaks is a favorite whipping boy. They accuse this organization of genocide. They are constantly nasty to autism speaks and those who are involved in it. They get angry at someone wishing for a cure for autism saying this is the way they are, that a cure would destroy them, when there is not an iota of scientific evidence to support that contention.
Displacement, another neurodiversity defense mechanism.
Monday, August 11, 2008
retard vs. house autistic and more nonesense from the neurodiversity movement
Well, I see that neurodiversity has a new cause celebre'. The use of the nasty slur 'retard' in this new movie that is coming out called Tropic Thunder. Ironically enough, Christ School, the producer of the hate film using the term 'house autistic' to describe autistics who want a cure, has made this new video trying to show what an awful term retard is. I am not sure what context retard is being used in this movie, but from what I have been able to gather at the very worst it is just an issue of poor taste among those who have produced the movie. There was no deliberate attempt to insult people with developmental disabilities by the people who have produced this movie as far as I can tell. If someone can show me evidence to the contrary, I will certainly stand corrected and I will denounce those who made tropic thunder as well. I would certainly never condone someone calling developmentally disabled people retards as a form of malice. I have been called this term many times in my relatively long life. If this is not the case however, the same argument could be made for banning The Adventures of Huckleberry Finn in high school and college literature classes and from public libraries or possibly even from private book stores because it uses the word nigger multiple times. For some reason, I don't see the NAACP and other similar organizations trying to ban this book. Certainly the context Samuel Clemens was using this word in was not to demean black people.
If one goes back to my previous post showing Christ School's house autistic film one can see that there is no question that this gentleman's goal is nothing short of being abusive and insulting to those who disagree with him about a cure for autism. The term 'house autistic' is unquestionably used as a slur with malice being the only purpose. When I posted a link to this individual's hateful video, he posted a bunch of vitriolic and abusive invective towards me in the comments section and threatened me with physical violence. Though I don't know how to link to this post and Mr. Christ School's comments, the interested reader can go back on autism's gadfly and see them. Normally I would delete such viscious and personal attacks but I kept them intact so that people who give a shit can judge the neurodiversity movement in general and the autism hub and ASAN in particular by the company they keep. The fact that ASAN would have such an association with an individual like this and promote a video like this only diminishes their credibility. It is certainly hypocritical of ASAN and Christ School to produce a film trying to show what a hateful expression 'retard' is, yet find it okay to call me and Marty Murphy "house autistics". I really don't understand why calling people with autism who desire a cure house autistic is any different from calling a black person a nigger or a developmentally disabled person a retard. Perhaps someone can explain that to me.
What is ironic is that Christ School tries to imply that I and others like me are house autistics and he and other neurodiversity adherents are field autistics. He implies that the reason I state that I want a cure for autism is to somehow please parents of autistic children and other neurotypicals and that I am somehow trying to ingratiate myself with these people. It should not even be necessary to comment on such absurd baloney but here goes anyway. I have certainly not advocated the status quo in any of my writings. I have called for abolition of the IDEA, constantly criticized ABA, certain types of occupational therapy which I underwent as a child to help my fine motor and perceptual motor problems. Criticized generation rescue, safe minds and other groups who have claimed that vaccines cause autism. You can also see the posts about my questioning the 1/10,000 number espoused by groups claiming there is an "autism epidemic" Whatever parent or NT groups interested in autism that I am cowtowing to is certainly a mystery to me. I wonder what field autistic Christ school and his other field autistic pals in the neurodiversity movement know about the real problems that a lot of us face. Christ School apparently only found out he had Asperger's as an adult when his son was diagnosed as autistic. He is able to apparently make a good living, make these videos which I am too low functioning to make and get married and support a child. I doubt he spent a minute of his life in a special education school and that goes for the majority of those in the ND movement. What do these "field autistics" really know about autism from the inside out?
Again ASAN is claiming to be doing something for autistic people. They and other disability groups have succeeded in getting part of the trailer of this movie that uses the term retard killed. When this movie comes out, there will be more urges to boycott it. But what will this accomplish? Recently a young woman sent an email both to me and my mom asking us how she could help her autistic son, who is finishing up kindergarten, breaking crayons, getting in trouble in his kindergarten for talking out in class and other behavioral problems. and all the problems she has to face as a mother of even a high functioning autistic child. How is this latest crusade by ASAN and other groups accomplishing anything to help someone like this. How did the absurd ransom notes campaign last year, help anyone with autism, except for helping Ari Neeman and some other "field autistics" satisfy their egos? Ari Neeman says that he is opposed to curing autism. He says that does not mean he is opposed to progress. How is this progress and how is an association with someone like Christ School who spits out vicious hate making progress?
If one goes back to my previous post showing Christ School's house autistic film one can see that there is no question that this gentleman's goal is nothing short of being abusive and insulting to those who disagree with him about a cure for autism. The term 'house autistic' is unquestionably used as a slur with malice being the only purpose. When I posted a link to this individual's hateful video, he posted a bunch of vitriolic and abusive invective towards me in the comments section and threatened me with physical violence. Though I don't know how to link to this post and Mr. Christ School's comments, the interested reader can go back on autism's gadfly and see them. Normally I would delete such viscious and personal attacks but I kept them intact so that people who give a shit can judge the neurodiversity movement in general and the autism hub and ASAN in particular by the company they keep. The fact that ASAN would have such an association with an individual like this and promote a video like this only diminishes their credibility. It is certainly hypocritical of ASAN and Christ School to produce a film trying to show what a hateful expression 'retard' is, yet find it okay to call me and Marty Murphy "house autistics". I really don't understand why calling people with autism who desire a cure house autistic is any different from calling a black person a nigger or a developmentally disabled person a retard. Perhaps someone can explain that to me.
What is ironic is that Christ School tries to imply that I and others like me are house autistics and he and other neurodiversity adherents are field autistics. He implies that the reason I state that I want a cure for autism is to somehow please parents of autistic children and other neurotypicals and that I am somehow trying to ingratiate myself with these people. It should not even be necessary to comment on such absurd baloney but here goes anyway. I have certainly not advocated the status quo in any of my writings. I have called for abolition of the IDEA, constantly criticized ABA, certain types of occupational therapy which I underwent as a child to help my fine motor and perceptual motor problems. Criticized generation rescue, safe minds and other groups who have claimed that vaccines cause autism. You can also see the posts about my questioning the 1/10,000 number espoused by groups claiming there is an "autism epidemic" Whatever parent or NT groups interested in autism that I am cowtowing to is certainly a mystery to me. I wonder what field autistic Christ school and his other field autistic pals in the neurodiversity movement know about the real problems that a lot of us face. Christ School apparently only found out he had Asperger's as an adult when his son was diagnosed as autistic. He is able to apparently make a good living, make these videos which I am too low functioning to make and get married and support a child. I doubt he spent a minute of his life in a special education school and that goes for the majority of those in the ND movement. What do these "field autistics" really know about autism from the inside out?
Again ASAN is claiming to be doing something for autistic people. They and other disability groups have succeeded in getting part of the trailer of this movie that uses the term retard killed. When this movie comes out, there will be more urges to boycott it. But what will this accomplish? Recently a young woman sent an email both to me and my mom asking us how she could help her autistic son, who is finishing up kindergarten, breaking crayons, getting in trouble in his kindergarten for talking out in class and other behavioral problems. and all the problems she has to face as a mother of even a high functioning autistic child. How is this latest crusade by ASAN and other groups accomplishing anything to help someone like this. How did the absurd ransom notes campaign last year, help anyone with autism, except for helping Ari Neeman and some other "field autistics" satisfy their egos? Ari Neeman says that he is opposed to curing autism. He says that does not mean he is opposed to progress. How is this progress and how is an association with someone like Christ School who spits out vicious hate making progress?
Have Autism Will Travel: The Sad Saga of David Miedzianik
About 18 years ago, I was absolutely intrigued to read a column in the Advocate, the ASA's newsletter by Temple Grandin describing an autistic man named David Miedzianik who had written a published autobiography. Up until that time, I had never heard of anyone besides Temple herself who had written an autobiography or memoir. I had already read Temple's book, but it did not completely resonate with me. Part of the reason being our different genders. I was interested in the types of problems an autistic male had, particularly the problems with celibacy that seem to befall so many of us.
Grandin gave David's address and said that he was interested in hearing from readers. I wrote him, telling him I was another male on the spectrum and I was interested in obtaining his autobiography and reading it. He wrote me back telling me where in England I could get it and it would cost about 7 or 8 pounds (about 10 or 11 dollars). I was not sure how to send away for his book on an international basis. He included a phone number and I phoned him. We talked. He had a strange accent and manner of speaking but I was able to understand him. He agreed to send me his book and I sent him twenty dollars through the mail. He sent me the autobiography along with a long poem he had written entitled "I hope some Lass Will Want Me After Reading This" As soon as I had read the title of his poem I knew I had found a kindred spirit!
I read the introduction by Elizabeth Newsome, the university of Nottingham professor who had asked David to write the book. Written in about 1986 or 1987 she commented that as far as she knew David's book was the only one of its kind other than Temple Grandin's book which had been written with the help of an assistant writer. David's book was written entirely by himself. When David first submitted it to Dr. Newsome he asked her to correct it. Except for some minor punctuation and adding a few paragraphs she did not find it necessary to do so. Also, Dr. Newsome commented on what I thought was the germane fact that David was a member of the majority gender among those on the spectrum and cited the figure of as high as a 10:1 ratio of males to females in the higher functioning autism groups.
When I first started reading David's book it did not interest me greatly. It was just minutae about David's relatives and did not seem germane to anything particular in my life. After dragging for a bit the book started to hit home. David talked about taking piano lessons and having to stop due to poor coordination. This hit home with me because of my own motor coordination problems. He also wrote about bullying he experienced in school. He described a ritual that occurred in British schools in the 1960s called the first year clip where older boys would hit younger boys about the ears and he thought he got it more than anyone.
He also talks about how he would get dizzy in movie theatres and this lead to his having to go to mental hospitals at various times during his life. David also talked about being fired from various jobs. The longest he had one job was for six weeks stacking pallets in a bakery.
Most compelling of all was David's description of the constant rejection he received from women. This is a subject that is rarely talked about in autism circles, though I suspect it is a very common problem among adult autistic males. As far as I know, David and myself are the only ones on the spectrum who have written about this subject. If there are others I would certainly be interested in knowing about them.
He writes about a nurse he met on a political march whom he was interested in but the interested was unrequited. He would put ads in singles magazines and then the girls would write back and ask him what job he had. They would find out he was unemployed and that would end his prospects. He writes about a girl named Amanda (not Baggs) whom he is attracted to. She makes it plain she has no romantic interest in him. David sums up his book:
Living is more or less a constant bore. If it were not for the writing I think I would have
Ended it all but the writing has given me reason to carry on.
David goes on to write about a couple of suicide attempts. First he takes an overdose of medications he was prescribed to control his behavior, but they only made him very tired. Another time he drank a bottle of Fairy Liquid (this British dishwashing soap) but only made him sick and did not kill him.
I would talk on the phone with David and he would sometimes repeat himself "when are you going to get us to America". I would get excited that David wrote this autobiography and told him that he was the only autistic male in the world who had written about his life's experiences and that he should be famous and an important person. (This was at least a couple years prior to Tom Mckean's book coming out, Sean Barron's and several years before Steve Shore wrote his book). I thought it unfair Grandin got so much attention and he got nothing. Uta Frith wrote both about Temple and David in her book Autism: Explaining the Enigma. She gave Temple's full name and cited her book as a reference in the bibliography. She did not give David's last name and did not cite his book in the bibliography. "All my life I've gotten the dirty end of the stick" David would reply when I pointed this out to him.
I wanted to help David and I suggested that he write to Bernard Rimland and tell him about himself. David wrote to Rimland and the ARI and he just got a form letter and was sent some vitamins and magnesium supplements. I then suggested that David write to Oliver Sacks. David took my suggestion and wrote to Sacks' who responded by saying that David's poetry showed strong emotion but did not take an interest in David. I published a positive review of David's book in "The Momentum" which was the newsletter of the Los Angeles chapter of the ASA. After this whenever I talked to him on the phone he would ask, "Can you get us some write-ups?" and would say this over and over again.
At one point it seemed that David had finally gotten a break as a producer of British plays had taken an interest in turning his autobiography into a London stage play. David was excited because people came from all over the world for London theatre.
Eventually David would correct me when I went on perseverating about the fact that he and Grandin were the only persons in the world to have written an autobiography. He told me about someone I had never heard of named Donna Williams who had written an autistic autobiography. Actually the term could be changed to autiebiographies. I think it was Larry Arnold who first started using this term, which I ended up using too, many years later. Donna had been one of the numerous persons with autism, including myself, who had read about David in various autism newsletters in the days before the internet. She had also accepted David's invitation to correspond with him. I told David that I felt he could still take solace in the fact that he was still the only male autiebiographer.
In April of 1992 I took a trip to England in part to visit David. After a few days in London I took a three-hour train ride on British railway from London to Sheffield in South Yorkshire, England. David lived in Rotherham which was very close to Sheffield. I was met by David and his friend of the family Marjorie who was in her late 70s. I would stay with Marjorie and her husband. David and his mum could not put me up because she was very ill from Parkinson's disease. David shook my hand tentatively. He seemed shy about meeting me at first and then showed me the outline of the tentative stageplay that was in the works based on his life. David showed me his copy of Donna's book, Nobody Nowhere, which had not yet been published in the United States. David gave me the book and told me I could read it as he had already read it and was not any longer interested in having it. This meant I would be getting a jump on most of the American reading population and would be able to read Nobody Nowhere before most of them did.
David had also taped a British national television program featuring Donna. He played it and we both watched with interest. I looked over at David who sat there stoically watching it. I could see the pain on his face as his aspirations to get notoriety from his book had again been trumped by another.
I was interested to note that David made similar stimmy motions to myself with hand flapping and rocking. I was between jobs at the time and intended to look for another job when I got back to the U.S. David would say, "there's a job for you" as soon as we would pass a construction site. Sometimes he would pick his nose and say, "stinkinman and robin" over and over. Another repetitive and compulsive phrase that he would say was, "take your autistic tablets".
Now that David had met me and he wanted to get out of the house due to his mother being so sick, David asked me if he could visit me in the U.S. for about a month. This seemed a long time and i was reluctant, but i finally said yes. I was a little concerned about David's behavior but felt it would be okay.
My friend, Jerry Newport, who also had an autistic spectrum disorder and I had met at various autism meetings in Los Angeles came with me to pick David up from the airport. This would make it easier for me to get out of the car and go into the terminal and find David while Jerry would drive my car around the terminal. Jerry had read David's book and was also interested in meeting this VIP from England. David would sleep on my couch. David decided to call Temple Grandin now that he was in the U.S. He told me that sometimes she was busy and would not return his phone calls. The phone rang and I answered it. Temple was at the other end of the line asking for David. Temple and I spoke briefly but then I put David on the line and he talked with her also. I suspected that normally she might not return the call, but she was surprised David was in the U.S. and decided to call.
I told David that while he was in the United States I would do what I could to get publicity for his writings. Jerry knew a reporter from a local Long Beach newspaper. This reporter phoned and was interested in talking with David. David was normally very slow moving due to being placed on Haldol to control his behavior. However, I was startled at how fast David moved when I told him a reporter was at the other end of the line to talk with him. The reporter asked David a few questions and hung up. We never heard back from him, apparently he had lost interest. I also took David to some lectures and meetings that the local Los Angeles chapter of the autism society offered. David sold a couple of the books that he had brought with him.
I was wondering if maybe Eric Courchesne could do something to help David. I had been a research subject in a few of the studies that Courchesne's lab had done. They were in San Diego, a two hour drive from Los Angeles. I also thought David might be interested in seeing what San Diego, a popular Southern California tourist attraction was like. Courchesne was a well-known autism researcher and possibly influential in the field of autism and might be able to drum up some publicity for David.
I phoned the lab and talked to Jean Townsend, one of Courchesne's associates at the time, and she said we could come visit her in the lab. We drove the two hours down to the lab and met Jean. She had heard of Elizabeth Newsome and was interested in David's book and we gave a copy of one of his books to the lab.
David then met Courchesne and I explained to him about David being the only autistic male in the world to have written a memoir of any kind. Alan Lincoln, who also worked with Courchesne at the time, did a short research project with both of us as subjects. We also had a videotaped interview.
I knew that now was as good a time as any to broach the subject of helping David with Dr. Courchesne. Courchesne replied, "There are some people coming over from Japan who are interested in autism and I will tell them about the book when they arrive." Strike 3 or maybe 4 or 5! It now seemed futile to try to do anything else further to help publicize David's book.
After David got back from England, he had another setback. The stageplay fell through and it seemed the producer had turned out to be more of a wannabe than a legitimate producer in the world of London theatre. David had travelled to London numerous times at his own expense to meet with this man to assist in the development of the play, so this had been a big disappointment. David's mother also died at this time.
After this, David would travel constantly, staying with our mutual friend Kathy Lissner-Grant who lived in Denver and who had also taken an interest in him and would put him up annually. When she got tired of putting him up, he ended up staying in a hostel. He also had an aunt in Canada whom he would sometimes stay with. He had a terrible time in England with constant problems with neighbors and social workers being meddlesome now that his mother was deceased, thinking David incapable of looking after his own affairs. On occasions they would even go as far as recommending some sort of institutionalized living arrangement for David such as the British equivalent of a group home. It seemed that his motto should have been have autism will travel.
About 8 years ago, David came and visited me again and stayed for three and a half weeks. This was the last time I saw him in person. David had started getting a bit more publicity. He had a mention in Tony Attwood's book which was a huge commercial success as an Asperger's book. He had also been written about in Francesca Happe's and Uta Frith's book Autism and Asperger Syndrome. He was still unhappy and not really satisfied with the way his writings were going and not able to sell much of them still in spite of the slightly increased publicity. David's frustration about his lack of success with women continued. He even went so far as to write a post on a usenet newsgroup demanding a girlfriend.
David would ask Kathy, his aunt and myself to put him up. But we knew he would just want to stay in our homes constantly if we acquiesced, so David sort of wore out his welcome with all of us, but he would still travel to the U.S. and stay in either a hostel or hotel. Eventually the Immigration service in the U.S. found out that David had stayed many more days in the U.S. than his visa would allow and he was not allowed entry into the U.S. and transported back to England the last time he tried to come to this country. He tried to get his visa renewed but to no avail. As far as I know he still travels to London and sometimes takes a ferry to France to avoid all of the problems he has in Rotherham with his social workers and neighbors.
He would also advertise for a girlfriend on the internet after the drastic step of demanding one on the usenet did not help him. David seems to fit the autistic stereotype of lacking theory of mind. He fails to understand the point of view of others. He does not understand why people would tire of letting him stay in their homes. He does not understand why advertising for a girlfriend on a web page or demanding a girlfriend in the usenet newsgroup will not yield him results.
Though David was a trendsetter as the second person to publish an "autiebiography" of any sort and the first male to do so, many others have now filled this void. Those include Tom Mckean Stephen Shore, Sean Barron, Daniel Tammet and others. David still lives in complete obscurity a forgotten landmark on the autism map. Most of the published memoirs of autistic people show success stories. Could it be that people don't want to know what the true prognosis is for most autistics rather than these few exceptions to the rule? David himself summed it up nicely in a usenet post:
The reason I have done badly with the stuff I write is that I give a very good picture of what it is like to be autistic. Temple Grandin sells so many books because she is hinting that autistic people can grow up to be a Ph.D. I am hinting that autistic people may end up in a Sorry mess and people do not like that. Temple Grandin's books are true for her, but not for the vast majority of people with autism. My poems really give a much more accurate picture of what being an autistic adult is like. Her stuff gives the idea that things are OK with autistic people when they're not. This is dangerous as people read this stuff and think that things are Ok and autistic kids will grow up to be Ph.D.'s. Then the next thing is that nothing gets done for us and we have to suffer all the more. This is very dangerous stuff, these books, and they do no favors to people who are really suffering with autism and things end up not being done when they need to be done. In about ten years' time when people's kids are not Ph.D's people will be asking for their money back from this stuff. Well, maybe not, but you can see what I mean.
Grandin gave David's address and said that he was interested in hearing from readers. I wrote him, telling him I was another male on the spectrum and I was interested in obtaining his autobiography and reading it. He wrote me back telling me where in England I could get it and it would cost about 7 or 8 pounds (about 10 or 11 dollars). I was not sure how to send away for his book on an international basis. He included a phone number and I phoned him. We talked. He had a strange accent and manner of speaking but I was able to understand him. He agreed to send me his book and I sent him twenty dollars through the mail. He sent me the autobiography along with a long poem he had written entitled "I hope some Lass Will Want Me After Reading This" As soon as I had read the title of his poem I knew I had found a kindred spirit!
I read the introduction by Elizabeth Newsome, the university of Nottingham professor who had asked David to write the book. Written in about 1986 or 1987 she commented that as far as she knew David's book was the only one of its kind other than Temple Grandin's book which had been written with the help of an assistant writer. David's book was written entirely by himself. When David first submitted it to Dr. Newsome he asked her to correct it. Except for some minor punctuation and adding a few paragraphs she did not find it necessary to do so. Also, Dr. Newsome commented on what I thought was the germane fact that David was a member of the majority gender among those on the spectrum and cited the figure of as high as a 10:1 ratio of males to females in the higher functioning autism groups.
When I first started reading David's book it did not interest me greatly. It was just minutae about David's relatives and did not seem germane to anything particular in my life. After dragging for a bit the book started to hit home. David talked about taking piano lessons and having to stop due to poor coordination. This hit home with me because of my own motor coordination problems. He also wrote about bullying he experienced in school. He described a ritual that occurred in British schools in the 1960s called the first year clip where older boys would hit younger boys about the ears and he thought he got it more than anyone.
He also talks about how he would get dizzy in movie theatres and this lead to his having to go to mental hospitals at various times during his life. David also talked about being fired from various jobs. The longest he had one job was for six weeks stacking pallets in a bakery.
Most compelling of all was David's description of the constant rejection he received from women. This is a subject that is rarely talked about in autism circles, though I suspect it is a very common problem among adult autistic males. As far as I know, David and myself are the only ones on the spectrum who have written about this subject. If there are others I would certainly be interested in knowing about them.
He writes about a nurse he met on a political march whom he was interested in but the interested was unrequited. He would put ads in singles magazines and then the girls would write back and ask him what job he had. They would find out he was unemployed and that would end his prospects. He writes about a girl named Amanda (not Baggs) whom he is attracted to. She makes it plain she has no romantic interest in him. David sums up his book:
Living is more or less a constant bore. If it were not for the writing I think I would have
Ended it all but the writing has given me reason to carry on.
David goes on to write about a couple of suicide attempts. First he takes an overdose of medications he was prescribed to control his behavior, but they only made him very tired. Another time he drank a bottle of Fairy Liquid (this British dishwashing soap) but only made him sick and did not kill him.
I would talk on the phone with David and he would sometimes repeat himself "when are you going to get us to America". I would get excited that David wrote this autobiography and told him that he was the only autistic male in the world who had written about his life's experiences and that he should be famous and an important person. (This was at least a couple years prior to Tom Mckean's book coming out, Sean Barron's and several years before Steve Shore wrote his book). I thought it unfair Grandin got so much attention and he got nothing. Uta Frith wrote both about Temple and David in her book Autism: Explaining the Enigma. She gave Temple's full name and cited her book as a reference in the bibliography. She did not give David's last name and did not cite his book in the bibliography. "All my life I've gotten the dirty end of the stick" David would reply when I pointed this out to him.
I wanted to help David and I suggested that he write to Bernard Rimland and tell him about himself. David wrote to Rimland and the ARI and he just got a form letter and was sent some vitamins and magnesium supplements. I then suggested that David write to Oliver Sacks. David took my suggestion and wrote to Sacks' who responded by saying that David's poetry showed strong emotion but did not take an interest in David. I published a positive review of David's book in "The Momentum" which was the newsletter of the Los Angeles chapter of the ASA. After this whenever I talked to him on the phone he would ask, "Can you get us some write-ups?" and would say this over and over again.
At one point it seemed that David had finally gotten a break as a producer of British plays had taken an interest in turning his autobiography into a London stage play. David was excited because people came from all over the world for London theatre.
Eventually David would correct me when I went on perseverating about the fact that he and Grandin were the only persons in the world to have written an autobiography. He told me about someone I had never heard of named Donna Williams who had written an autistic autobiography. Actually the term could be changed to autiebiographies. I think it was Larry Arnold who first started using this term, which I ended up using too, many years later. Donna had been one of the numerous persons with autism, including myself, who had read about David in various autism newsletters in the days before the internet. She had also accepted David's invitation to correspond with him. I told David that I felt he could still take solace in the fact that he was still the only male autiebiographer.
In April of 1992 I took a trip to England in part to visit David. After a few days in London I took a three-hour train ride on British railway from London to Sheffield in South Yorkshire, England. David lived in Rotherham which was very close to Sheffield. I was met by David and his friend of the family Marjorie who was in her late 70s. I would stay with Marjorie and her husband. David and his mum could not put me up because she was very ill from Parkinson's disease. David shook my hand tentatively. He seemed shy about meeting me at first and then showed me the outline of the tentative stageplay that was in the works based on his life. David showed me his copy of Donna's book, Nobody Nowhere, which had not yet been published in the United States. David gave me the book and told me I could read it as he had already read it and was not any longer interested in having it. This meant I would be getting a jump on most of the American reading population and would be able to read Nobody Nowhere before most of them did.
David had also taped a British national television program featuring Donna. He played it and we both watched with interest. I looked over at David who sat there stoically watching it. I could see the pain on his face as his aspirations to get notoriety from his book had again been trumped by another.
I was interested to note that David made similar stimmy motions to myself with hand flapping and rocking. I was between jobs at the time and intended to look for another job when I got back to the U.S. David would say, "there's a job for you" as soon as we would pass a construction site. Sometimes he would pick his nose and say, "stinkinman and robin" over and over. Another repetitive and compulsive phrase that he would say was, "take your autistic tablets".
Now that David had met me and he wanted to get out of the house due to his mother being so sick, David asked me if he could visit me in the U.S. for about a month. This seemed a long time and i was reluctant, but i finally said yes. I was a little concerned about David's behavior but felt it would be okay.
My friend, Jerry Newport, who also had an autistic spectrum disorder and I had met at various autism meetings in Los Angeles came with me to pick David up from the airport. This would make it easier for me to get out of the car and go into the terminal and find David while Jerry would drive my car around the terminal. Jerry had read David's book and was also interested in meeting this VIP from England. David would sleep on my couch. David decided to call Temple Grandin now that he was in the U.S. He told me that sometimes she was busy and would not return his phone calls. The phone rang and I answered it. Temple was at the other end of the line asking for David. Temple and I spoke briefly but then I put David on the line and he talked with her also. I suspected that normally she might not return the call, but she was surprised David was in the U.S. and decided to call.
I told David that while he was in the United States I would do what I could to get publicity for his writings. Jerry knew a reporter from a local Long Beach newspaper. This reporter phoned and was interested in talking with David. David was normally very slow moving due to being placed on Haldol to control his behavior. However, I was startled at how fast David moved when I told him a reporter was at the other end of the line to talk with him. The reporter asked David a few questions and hung up. We never heard back from him, apparently he had lost interest. I also took David to some lectures and meetings that the local Los Angeles chapter of the autism society offered. David sold a couple of the books that he had brought with him.
I was wondering if maybe Eric Courchesne could do something to help David. I had been a research subject in a few of the studies that Courchesne's lab had done. They were in San Diego, a two hour drive from Los Angeles. I also thought David might be interested in seeing what San Diego, a popular Southern California tourist attraction was like. Courchesne was a well-known autism researcher and possibly influential in the field of autism and might be able to drum up some publicity for David.
I phoned the lab and talked to Jean Townsend, one of Courchesne's associates at the time, and she said we could come visit her in the lab. We drove the two hours down to the lab and met Jean. She had heard of Elizabeth Newsome and was interested in David's book and we gave a copy of one of his books to the lab.
David then met Courchesne and I explained to him about David being the only autistic male in the world to have written a memoir of any kind. Alan Lincoln, who also worked with Courchesne at the time, did a short research project with both of us as subjects. We also had a videotaped interview.
I knew that now was as good a time as any to broach the subject of helping David with Dr. Courchesne. Courchesne replied, "There are some people coming over from Japan who are interested in autism and I will tell them about the book when they arrive." Strike 3 or maybe 4 or 5! It now seemed futile to try to do anything else further to help publicize David's book.
After David got back from England, he had another setback. The stageplay fell through and it seemed the producer had turned out to be more of a wannabe than a legitimate producer in the world of London theatre. David had travelled to London numerous times at his own expense to meet with this man to assist in the development of the play, so this had been a big disappointment. David's mother also died at this time.
After this, David would travel constantly, staying with our mutual friend Kathy Lissner-Grant who lived in Denver and who had also taken an interest in him and would put him up annually. When she got tired of putting him up, he ended up staying in a hostel. He also had an aunt in Canada whom he would sometimes stay with. He had a terrible time in England with constant problems with neighbors and social workers being meddlesome now that his mother was deceased, thinking David incapable of looking after his own affairs. On occasions they would even go as far as recommending some sort of institutionalized living arrangement for David such as the British equivalent of a group home. It seemed that his motto should have been have autism will travel.
About 8 years ago, David came and visited me again and stayed for three and a half weeks. This was the last time I saw him in person. David had started getting a bit more publicity. He had a mention in Tony Attwood's book which was a huge commercial success as an Asperger's book. He had also been written about in Francesca Happe's and Uta Frith's book Autism and Asperger Syndrome. He was still unhappy and not really satisfied with the way his writings were going and not able to sell much of them still in spite of the slightly increased publicity. David's frustration about his lack of success with women continued. He even went so far as to write a post on a usenet newsgroup demanding a girlfriend.
David would ask Kathy, his aunt and myself to put him up. But we knew he would just want to stay in our homes constantly if we acquiesced, so David sort of wore out his welcome with all of us, but he would still travel to the U.S. and stay in either a hostel or hotel. Eventually the Immigration service in the U.S. found out that David had stayed many more days in the U.S. than his visa would allow and he was not allowed entry into the U.S. and transported back to England the last time he tried to come to this country. He tried to get his visa renewed but to no avail. As far as I know he still travels to London and sometimes takes a ferry to France to avoid all of the problems he has in Rotherham with his social workers and neighbors.
He would also advertise for a girlfriend on the internet after the drastic step of demanding one on the usenet did not help him. David seems to fit the autistic stereotype of lacking theory of mind. He fails to understand the point of view of others. He does not understand why people would tire of letting him stay in their homes. He does not understand why advertising for a girlfriend on a web page or demanding a girlfriend in the usenet newsgroup will not yield him results.
Though David was a trendsetter as the second person to publish an "autiebiography" of any sort and the first male to do so, many others have now filled this void. Those include Tom Mckean Stephen Shore, Sean Barron, Daniel Tammet and others. David still lives in complete obscurity a forgotten landmark on the autism map. Most of the published memoirs of autistic people show success stories. Could it be that people don't want to know what the true prognosis is for most autistics rather than these few exceptions to the rule? David himself summed it up nicely in a usenet post:
The reason I have done badly with the stuff I write is that I give a very good picture of what it is like to be autistic. Temple Grandin sells so many books because she is hinting that autistic people can grow up to be a Ph.D. I am hinting that autistic people may end up in a Sorry mess and people do not like that. Temple Grandin's books are true for her, but not for the vast majority of people with autism. My poems really give a much more accurate picture of what being an autistic adult is like. Her stuff gives the idea that things are OK with autistic people when they're not. This is dangerous as people read this stuff and think that things are Ok and autistic kids will grow up to be Ph.D.'s. Then the next thing is that nothing gets done for us and we have to suffer all the more. This is very dangerous stuff, these books, and they do no favors to people who are really suffering with autism and things end up not being done when they need to be done. In about ten years' time when people's kids are not Ph.D's people will be asking for their money back from this stuff. Well, maybe not, but you can see what I mean.
Sunday, August 10, 2008
Possible faux pas by autism speaks
I have just found out about an interesting activity that Autism Speaks may be involved in. Unlike many persons in the autism community I have defended Autism Speaks' when I felt they were being unjustly attacked by neurodiversity proponents and those in the "mercury militia". I am also a supporter of the scientific research that Autism Speaks funds (well probably most of it) and the desire to find a cure for autism and prevent children from becoming autistic. I might even donate some money to them if my financial situation ever improves. In the past I have donated money to CAN before they got gobbled up by AS, but not AS itself since they have existed.
However, when I feel they have done something wrong or even if there is a possibility of wrong doing, I will write about it in Autism's gadfly. As the few regular readers of this blog know, I have done this previously when I found out the lab that Michelle Dawson works in received funding from AS. Also, when I found out that Morton Gernsbacher was a guest reviewer on their scientific advisory board I wrote about this too. These individuals have been consistently involved in activities counterproductive to finding a cure and preventing autism and I felt that this should be brought to attention.
Well here I go again. I am still intrigued by "$100 buck an hour phone consultation" Bill Stillman whom I have written about in the last two blog entries. I have still been reading some past blog posts of his http://www.williamstillman.com/blog.html and I found out that he has written a document that he is claiming will be included in a community school kit that autism speaks has just come out with. Here is the link for info about the school kit that Stillman was talking about http://www.autismspeaks.org/press/school_community_tool_kit.php On reading this link, I can't find anything specifically about Stillman. It just states that there is an appendix which includes certain articles. So, I am not positive that they are including any advice from this individual or not.
Autism speaks seems to be broadening the scope of the purpose that they were first intended for, i.e. providing funding for scientific research. Most likely due to parental pressure to do something for children in the here and now, they have expanded their scope to scholastic problems. I have somewhat mixed feelings about this. I believe that this organization should just stick to scientific research and not be a multipurpose organization and have message boards and social networking boards like the one they are apparently now in the process of developing. I think this new internet page on their website is supposed to be an autistic myspace of sorts. Of course, if there was something that could be done in the here and now for children, I would be for it, ergo the mixed feelings. However, I am really skeptical that a community tool kit would provide any answers for people trying to mitigate the problems that autistic children have in various school situations. Even if something could be done, it would probably be better done by other organizations. AS would probably be better off just spending all of its resources on scientific research to find a cure and prevention of autism as soon as possible.
This sort of thing is not unprecedented. Before the existence of AS, CAN had in its bylaws that they would only provide funding for research into the biology of autism. They violated their own bylaws by funding one of Lovaas' studies and also some stuff that Lovaas' proteges Laura Schriebman and Bob Koegel were doing. This is in spite of the fact that Lovaas has received considerable NIMH funding and yet has never submitted any adult outcomes of the children in his 1987 study to peer review. This was one of the criticisms I had of CAN when it existed. Interestingly enough, Dov Shestack, whose parents founded CAN,underwent ABA. At the age of 16, he cannot speak. I would think they of all people would not want to fund ABA as it would appear that this intervention was not very helpful to their son.
I don't know if autism speaks has any relationship with Stillman or not or whether they included anything that he wrote in their school community tool kit. However, even the possibility of this is troubling to me. This is a person who charges $100 an hour just to talk to people on the phone about kids he never met. Other than an undergraduate degree in education, having published a few books and diagnosing himself with Asperger's I am not sure what qualifications he has. He also apparently charges for in person consultations, though he says the person must inquire about the fees. He has claimed that he can tell exactly what an autistic person needs after only spending ten minutes with them. He claims that he is certain that autism prevalence will be 1 in 10 persons by the year 2018 at the latest. He seems to think autism is some sort of positive stage in evolution and that it is being directed by divine providence.
I thought that it was crazy that AS would fund a lab that employs Michelle Dawson and allow Morton Gernsbacher who writes articles saying autism should be accepted and not be cured and that there are severely autistic people who have made great contributions to arts and the sciences would be a guest scientific advisor and review research grants. I thought it was bizarre of autism speaks to publish John Michael Carley's piece, articles of understanding. Carley, is someone who found out that he had Asperger's at 36, just decided he had Asperger's after his son was diagnosed with an ASD and was able to make a good living and support a family and is another example of one of those "autistics" who has the gall to speak for me and claim that most autistics don't want to be cured. But if AS is really including things that Stillman wrote in a community school kit, this pales in comparison.
However, when I feel they have done something wrong or even if there is a possibility of wrong doing, I will write about it in Autism's gadfly. As the few regular readers of this blog know, I have done this previously when I found out the lab that Michelle Dawson works in received funding from AS. Also, when I found out that Morton Gernsbacher was a guest reviewer on their scientific advisory board I wrote about this too. These individuals have been consistently involved in activities counterproductive to finding a cure and preventing autism and I felt that this should be brought to attention.
Well here I go again. I am still intrigued by "$100 buck an hour phone consultation" Bill Stillman whom I have written about in the last two blog entries. I have still been reading some past blog posts of his http://www.williamstillman.com/blog.html and I found out that he has written a document that he is claiming will be included in a community school kit that autism speaks has just come out with. Here is the link for info about the school kit that Stillman was talking about http://www.autismspeaks.org/press/school_community_tool_kit.php On reading this link, I can't find anything specifically about Stillman. It just states that there is an appendix which includes certain articles. So, I am not positive that they are including any advice from this individual or not.
Autism speaks seems to be broadening the scope of the purpose that they were first intended for, i.e. providing funding for scientific research. Most likely due to parental pressure to do something for children in the here and now, they have expanded their scope to scholastic problems. I have somewhat mixed feelings about this. I believe that this organization should just stick to scientific research and not be a multipurpose organization and have message boards and social networking boards like the one they are apparently now in the process of developing. I think this new internet page on their website is supposed to be an autistic myspace of sorts. Of course, if there was something that could be done in the here and now for children, I would be for it, ergo the mixed feelings. However, I am really skeptical that a community tool kit would provide any answers for people trying to mitigate the problems that autistic children have in various school situations. Even if something could be done, it would probably be better done by other organizations. AS would probably be better off just spending all of its resources on scientific research to find a cure and prevention of autism as soon as possible.
This sort of thing is not unprecedented. Before the existence of AS, CAN had in its bylaws that they would only provide funding for research into the biology of autism. They violated their own bylaws by funding one of Lovaas' studies and also some stuff that Lovaas' proteges Laura Schriebman and Bob Koegel were doing. This is in spite of the fact that Lovaas has received considerable NIMH funding and yet has never submitted any adult outcomes of the children in his 1987 study to peer review. This was one of the criticisms I had of CAN when it existed. Interestingly enough, Dov Shestack, whose parents founded CAN,underwent ABA. At the age of 16, he cannot speak. I would think they of all people would not want to fund ABA as it would appear that this intervention was not very helpful to their son.
I don't know if autism speaks has any relationship with Stillman or not or whether they included anything that he wrote in their school community tool kit. However, even the possibility of this is troubling to me. This is a person who charges $100 an hour just to talk to people on the phone about kids he never met. Other than an undergraduate degree in education, having published a few books and diagnosing himself with Asperger's I am not sure what qualifications he has. He also apparently charges for in person consultations, though he says the person must inquire about the fees. He has claimed that he can tell exactly what an autistic person needs after only spending ten minutes with them. He claims that he is certain that autism prevalence will be 1 in 10 persons by the year 2018 at the latest. He seems to think autism is some sort of positive stage in evolution and that it is being directed by divine providence.
I thought that it was crazy that AS would fund a lab that employs Michelle Dawson and allow Morton Gernsbacher who writes articles saying autism should be accepted and not be cured and that there are severely autistic people who have made great contributions to arts and the sciences would be a guest scientific advisor and review research grants. I thought it was bizarre of autism speaks to publish John Michael Carley's piece, articles of understanding. Carley, is someone who found out that he had Asperger's at 36, just decided he had Asperger's after his son was diagnosed with an ASD and was able to make a good living and support a family and is another example of one of those "autistics" who has the gall to speak for me and claim that most autistics don't want to be cured. But if AS is really including things that Stillman wrote in a community school kit, this pales in comparison.
Friday, August 8, 2008
1 in 10,000? really?
A past figure for autism prevalence that is sometimes bandied about is the famous 1 in 10,000 prevalence that, at least in some instances, those who state this figure, claim that this is a recent prevalence figure for autism. In the latest post in Dad of Cameron's blog, http://www.autismstreet.org/weblog/?p=191#commentspediatrician Jay Gordon gives a 1-2/10,000 figure of autism in the 1980s. As I have mentioned in a couple of previous posts Dr. Bob Hedron who heads the MIND institute claimed in his ASA presentation that the 1 in 10,000 figure was the autism prevalence as recently as 1993. As those who read my previous post will remember autism author and consultant Bill Stillman cited a 1/10,000 figure for 1990. also David Kirby author of the book trying to demonstrate that autism may be caused by vaccines entitled evidence of harm claimed the prevalence was 1/10,000 in 1987 http://www.evidenceofharm.com/ Well, there seem to be others that claim this.
The observant reader will remember in my last post about Bill Stillman and his use of this number, I stated that this figure, from what I knew about it, came from a study done by Darold Treffert that was published in 1970.
I have looked at an interesting article on Dr. Treffert's web page about this study and some other issues in the field of autism here: http://www.wisconsinmedicalsociety.org/savant_syndrome/savant_articles/autistic_disorder
Apparently Treffert's study originally found a prevalence of more than 3/10,000 of autism rather than the 1-2/10,000 number that is often preached by those who claim we are in the midst of an autism "epidemic" as if it were gospel. So where does this 1-2/10,000 number come from?
In the study, Dr. Treffert did a survey between 1962-1967 of what was then called childhood schizophrenia. Though the term autism has been in existence as a noun since 1943 (it has been in existence as an adjective since 1911) it was never added to the diagnostic nomenclature of the DSM until 1980. Dr. Treffert divided the children into three different groups. The first group had classic Kanner type autism, which I think was the type that was originally defined by Kanner in 1943. The second group had non-classical autism. These children would probably be labeled PDD/NOS nowadays. The third group was "probable autistic features with organicity". One must remember that at the time this survey was carried out in the 1960s, it was believed in large part that classic autism had an emotional etiology rather than an organic one, which is probably the reason for the third group in Treffert's study. Approximately 25% of these children were part of the first group with the classic Kanner's autism. This is what probably accounts for the 1/10,000 figure that is quoted by these people. But is this 1/10,000 figure really rational? One would have to say no, because attitudes about autism diagnostic criteria have clearly changed. The 2007 CDC study which accounts for the famous quoted 1/150 prevalence included all parts of the spectrum, autism, PDD/NOS, Asperger's, etc. It is also possible that children with problems like CDD and Rett's which nowadays might be counted as separate disorders from autism were also counted.
Since Treffert was collecting the data from his study between the years 1962-1967 and the study was published in 1970, I am not sure where the years 1987 from Kirby, 1990 From Stillman and 1993 from Bob Hedron and the 1980's 1-2/10,000 figure that Dr. Jay Gordon cites come from. This still remains a mystery.
The observant reader will remember in my last post about Bill Stillman and his use of this number, I stated that this figure, from what I knew about it, came from a study done by Darold Treffert that was published in 1970.
I have looked at an interesting article on Dr. Treffert's web page about this study and some other issues in the field of autism here: http://www.wisconsinmedicalsociety.org/savant_syndrome/savant_articles/autistic_disorder
Apparently Treffert's study originally found a prevalence of more than 3/10,000 of autism rather than the 1-2/10,000 number that is often preached by those who claim we are in the midst of an autism "epidemic" as if it were gospel. So where does this 1-2/10,000 number come from?
In the study, Dr. Treffert did a survey between 1962-1967 of what was then called childhood schizophrenia. Though the term autism has been in existence as a noun since 1943 (it has been in existence as an adjective since 1911) it was never added to the diagnostic nomenclature of the DSM until 1980. Dr. Treffert divided the children into three different groups. The first group had classic Kanner type autism, which I think was the type that was originally defined by Kanner in 1943. The second group had non-classical autism. These children would probably be labeled PDD/NOS nowadays. The third group was "probable autistic features with organicity". One must remember that at the time this survey was carried out in the 1960s, it was believed in large part that classic autism had an emotional etiology rather than an organic one, which is probably the reason for the third group in Treffert's study. Approximately 25% of these children were part of the first group with the classic Kanner's autism. This is what probably accounts for the 1/10,000 figure that is quoted by these people. But is this 1/10,000 figure really rational? One would have to say no, because attitudes about autism diagnostic criteria have clearly changed. The 2007 CDC study which accounts for the famous quoted 1/150 prevalence included all parts of the spectrum, autism, PDD/NOS, Asperger's, etc. It is also possible that children with problems like CDD and Rett's which nowadays might be counted as separate disorders from autism were also counted.
Since Treffert was collecting the data from his study between the years 1962-1967 and the study was published in 1970, I am not sure where the years 1987 from Kirby, 1990 From Stillman and 1993 from Bob Hedron and the 1980's 1-2/10,000 figure that Dr. Jay Gordon cites come from. This still remains a mystery.
Thursday, August 7, 2008
autism prevalence 1 in 10 children by2013, 2018 at latest???!!!
Yes, your eyes are not playing tricks on you. This is a statistic that Asperger's author William Stillman says he believes will happen. Actually he says In fact, I’m going to predict that within five to ten years, the rate in the United States will jump to 1 in 10 children. He states this in his blog post http://www.basilandspice.com/display/ShowJournal?moduleId=1070760&categoryId=181865 . Stillman seems to think that autism is some sort of new stage in human evolution and that this is a preordained plan from God as far as I can tell. He has written a book called Autism and the God Connection which I have not read but now may have to try to read as well as his other books, since he is a writer with such an interesting perspective. He says that he has a diagnosis of Asperger's syndrome. He seems to take an interest in the entire autism spectrum, though Asperger's syndrome in the cases of many people who claim to have it is very different from classic autism, which I had as a very small child, where I could not speak at age 3. So even if 10% of all children born around 2005 or so, are not autistic by 2013 they will be by 2018.
I am going to try really hard to remember this prediction and write about it in 5 years and then in 10 years, if I am still alive at that time and able to write about it.
Stillman makes this video in which he claims that increases in autism prevalence are analogous to evolution. He compares the evolution of homo sapiens from homo erectus, neanderthal man and more primitive forms of humans that apparently took thousands of years, to the increases in autism that have only taken place in the last 20 years (I guess I should say alleged increases). He also makes the common error of stating that the prevalence rate for autism in 1990 was 1 in 10,000 to show how much autism has been increasing. Going back to studies done in the United States in the early 1980s and the Lotter study done in England in 1966, prevalence rates for autism were 4/10,000. The 1 in 10,000 figure comes from a study published around 1970 by Darold Treffert in the days when very few people had heard of autism and certainly no one would have even thought that people of normal intelligence could claim to have autism. Certainly Stillman himself would not have been thought of as autistic during the time this study was done. To the best of my knowledge, this is the only published epidemiologic study that has a prevalence figure that is this low.
Stillman is not the only person to make this mistake or use this statistic to make a supposed autism epidemic or increase look worse than it really is. Jenny McCarthy on television did the same thing, though she gives the 1/10,000 date as 1983. Dr. Robert Hedron, who is in charge of the MIND institute used this statistic also at ASA 2008 when he was one of the keynote speakers. He gave the year 1993 when the prevalence was still supposedly 1/10,000.
Like many neurodiversity adherents Stillman seems to find virtues in autism, saying they need less words to speak and aren't into competition and aggression.
Though Stillman seems to think that autism is the next step in a positive evolution, he does not seem to deny that autism can be a problem for some and that autistics need some sort of help. In fact, he has a consulting service in which he charges $100 for phone consultations. He won't do email consultations for ethical reasons, but for some reason thinks that talking to parents on the phone for $100 is somehow ethical. He won't accept payment from parents directly but apparently from school districts and other providers. Stillman states that he has a bachelors in education. Other than that, I am not exactly sure what his qualifications are to make these consultations and charge $100 an hour except that he is a guy who has published a few books and claims to have asperger's syndrome. If this web site is accurate, http://psychservices.psychiatryonline.org/cgi/content/full/55/11/1323, Stillman does not even have a diagnosis of an ASD by a trained clinician, he is self-diagnosed as Asperger's, yet he can get books published and apparently can make judgements over the phone about kids he has never met. He will only do the consultations in one hour increments which I presume means that he won't charge $117 for a 70 minute consultation, but will either charge $200 for it or insist on a full two hours. I suppose because of the supreme court's decision in the Shannon Carter case which said that parents can legally have school districts reimburse them for programs in their IEPs that use non credentialed personnel means that Stillman can do this and have school districts reimburse him for these consultations.
In spite of claiming that at least a one hundred dollar one hour consultation is needed Stillman claims in one article he wrote, http://www.williamstillman.com/archive/autism-a-new-cultural-competency.html that all he needs is ten minutes with an autistic child to tell his parents exactly what they need. This seems to be a record for omniscience among autism clinicians credentialed or otherwise.
I may have to spend more time reading this guy's web page and articles to glean more interesting insights from this absolutely fascinating spectrumite and autism author. I may have to revise this blog post or at least add to it if and when I find more interesting tidbits of info.
I realize I will have to be patient to wait five, maybe ten years to see if Stillman's incredible prediction comes true. I remember one parent of an autistic child I met at a conference about four and a half years ago who stated that because thimerosal had largely been taken out of vaccinations that the autism rate in the California state regional centers would go down to about 4/10,000 by about 2007. Certainly that prediction did not come to pass. I think I can wait and see if Stillman's prediction comes true.
I am going to try really hard to remember this prediction and write about it in 5 years and then in 10 years, if I am still alive at that time and able to write about it.
Stillman makes this video in which he claims that increases in autism prevalence are analogous to evolution. He compares the evolution of homo sapiens from homo erectus, neanderthal man and more primitive forms of humans that apparently took thousands of years, to the increases in autism that have only taken place in the last 20 years (I guess I should say alleged increases). He also makes the common error of stating that the prevalence rate for autism in 1990 was 1 in 10,000 to show how much autism has been increasing. Going back to studies done in the United States in the early 1980s and the Lotter study done in England in 1966, prevalence rates for autism were 4/10,000. The 1 in 10,000 figure comes from a study published around 1970 by Darold Treffert in the days when very few people had heard of autism and certainly no one would have even thought that people of normal intelligence could claim to have autism. Certainly Stillman himself would not have been thought of as autistic during the time this study was done. To the best of my knowledge, this is the only published epidemiologic study that has a prevalence figure that is this low.
Stillman is not the only person to make this mistake or use this statistic to make a supposed autism epidemic or increase look worse than it really is. Jenny McCarthy on television did the same thing, though she gives the 1/10,000 date as 1983. Dr. Robert Hedron, who is in charge of the MIND institute used this statistic also at ASA 2008 when he was one of the keynote speakers. He gave the year 1993 when the prevalence was still supposedly 1/10,000.
Like many neurodiversity adherents Stillman seems to find virtues in autism, saying they need less words to speak and aren't into competition and aggression.
Though Stillman seems to think that autism is the next step in a positive evolution, he does not seem to deny that autism can be a problem for some and that autistics need some sort of help. In fact, he has a consulting service in which he charges $100 for phone consultations. He won't do email consultations for ethical reasons, but for some reason thinks that talking to parents on the phone for $100 is somehow ethical. He won't accept payment from parents directly but apparently from school districts and other providers. Stillman states that he has a bachelors in education. Other than that, I am not exactly sure what his qualifications are to make these consultations and charge $100 an hour except that he is a guy who has published a few books and claims to have asperger's syndrome. If this web site is accurate, http://psychservices.psychiatryonline.org/cgi/content/full/55/11/1323, Stillman does not even have a diagnosis of an ASD by a trained clinician, he is self-diagnosed as Asperger's, yet he can get books published and apparently can make judgements over the phone about kids he has never met. He will only do the consultations in one hour increments which I presume means that he won't charge $117 for a 70 minute consultation, but will either charge $200 for it or insist on a full two hours. I suppose because of the supreme court's decision in the Shannon Carter case which said that parents can legally have school districts reimburse them for programs in their IEPs that use non credentialed personnel means that Stillman can do this and have school districts reimburse him for these consultations.
In spite of claiming that at least a one hundred dollar one hour consultation is needed Stillman claims in one article he wrote, http://www.williamstillman.com/archive/autism-a-new-cultural-competency.html that all he needs is ten minutes with an autistic child to tell his parents exactly what they need. This seems to be a record for omniscience among autism clinicians credentialed or otherwise.
I may have to spend more time reading this guy's web page and articles to glean more interesting insights from this absolutely fascinating spectrumite and autism author. I may have to revise this blog post or at least add to it if and when I find more interesting tidbits of info.
I realize I will have to be patient to wait five, maybe ten years to see if Stillman's incredible prediction comes true. I remember one parent of an autistic child I met at a conference about four and a half years ago who stated that because thimerosal had largely been taken out of vaccinations that the autism rate in the California state regional centers would go down to about 4/10,000 by about 2007. Certainly that prediction did not come to pass. I think I can wait and see if Stillman's prediction comes true.
Saturday, August 2, 2008
New literary journal celebrates autism
Well here is an interesting new literary journal I happened across http://www.hyperlexiajournal.com/ This is a new literary journal that will start publication in October that is set up specifically to Celebrate autism. So we have that woman (I don't remember her exact name) who has the joy of autism blog. Also Liane Willey a female with alleged asperger's who was able to get a ph.d., marry and have children also feels that brain damage should be celebrated. Maybe John Best will blog about this with one of his usual rants. This will probably make him angry. Though there are a lot of things I don't agree on with Best, and don't agree with all of his tactics. One thing I do agree with him on is that it is time to stop celebrating brain damage. Yes, you read right, I believe that autism is brain damage. Some neurodiversity adherents seem to be offended by the term brain damage, even though they somehow acknowledge that autism is a disability and more than merely a "difference".
Interestingly enough the hyperlexia journal says that the good and the bad should be celebrated. Why should bad things be celebrated. They also go on to state that the diversity of the human mind should be respected and any hateful submissions will be rejected. This likely includes anyone that wishes to cure autism or believes that autism is any sort of deficiency.
The maximum word count of submissions is small, 1500 words or less. This does not give much leeway for most short stories, though I suppose a lot of poems fit this criteria. Also some short essays.
I have written 23 short stories. Not a single one of them has been published. A few of my nonfiction essays have been published in a few places though but not very many. I am always hoping to find places where, as a fledgling writer, I can submit pieces to. This journal will not be one of those.
Interestingly enough the hyperlexia journal says that the good and the bad should be celebrated. Why should bad things be celebrated. They also go on to state that the diversity of the human mind should be respected and any hateful submissions will be rejected. This likely includes anyone that wishes to cure autism or believes that autism is any sort of deficiency.
The maximum word count of submissions is small, 1500 words or less. This does not give much leeway for most short stories, though I suppose a lot of poems fit this criteria. Also some short essays.
I have written 23 short stories. Not a single one of them has been published. A few of my nonfiction essays have been published in a few places though but not very many. I am always hoping to find places where, as a fledgling writer, I can submit pieces to. This journal will not be one of those.
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