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.
Thursday, August 14, 2008
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.
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