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.
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