Tuesday, July 29, 2008
legal system and IDEA impact on autism
In November, 1975 president Gerald Ford signed the Education for all handicapped children act which later was to become the Individuals with disabilities education act with great reluctance. He stated that in spite of the fact the law had good intentions it would never be able to promise what it delivered and was unrealistically raising the expectations of the groups affected.
Neither man could have possibly realized how prescient they were.
I was a special education student for many years. Though I had left special education several years before the education for all handicapped children act was enacted into law, I am still interested in many of the issues and consequences of this law.
I recently reread an article that appeared in the Journal of Autism and Developmental Disorders about six years ago by attorney Myra Mandlawitz about the legal system's impact on educational programming for autistic children. This article has a bunch of interesting stuff.
In Vorhees, one new jersey township it was stated that 40 hours a week of intensive one on one instruction was an expensive norm but this and other parental requests were consented to in order to avoid litigation. It was expected that this level of service for the autistic children would continue year after year regardless of whether or not the child was making progress in the treatment. The motivation for continuing the treatments seemed to be avoidance of litigation by parents.
One of the earliest supreme court cases regarding special ed was the Rowley case which took place in the early 1980s. it was stated by the supreme court that an "appropriate" education did not mean "best". It did not mean that school districts could only offer a jalopy level of education but were under no obligation to offer a rolls royce quality of education either. If there are two programs that yield the same result, the school district may opt for the less costly of the two.
In the Burlington case, the supreme court ruled that parents may be reimbursed for money paid out of their own pockets for special ed programs provided that school's IEP was found to be inappropriate and the program the parents chose conferred benefits. The Rowley standard is used.
The next case was the Shannon Carter case in which the supreme court ruled that parents could be reimbursed for educational services by the school district if they sent their child to a private school even if the services were conducted by noncredentialed teachers or uncertified personnel. This decision was made in 1994 and is of great interest, because it paved the way for commercialization of ABA programs. The next court case after this was Malkentzos vs. DeBueno. The school district argued that because the parents used uncertified college students as therapists for the autistic child's ABA program that they were not under obligation to pay for the treatment, but because of the Carter decision they did not prevail and the court ruled that ABA or any other autism intervention (one not requiring licensure under other laws) need not be done by credentialed persons. Because of this decision, there was no need for anyone operating an ABA program for autistic children to hire anyone with any particular qualifications. Many of the Lovaas therapists are now college students or even teenagers not old enough to legally buy a six pack. We can start to see a pattern here that was started shortly before the mid 1990s, which paved the way for persons to have an incentive to get an autism diagnosis because of the availability of this therapy. The study published in 1987 by Dr. Lovaas alleged that nearly 50% of autistic children could have completely normal functioning if 40 hours a week of this therapy was done. Of course Lovaas' study was dependent on the use hitting children and possibly other aversives. Aversives were outlawed in California in 1991 and possibly some other jurisdictions as well, but the method was still marketed and promoted albeit dishonestly.
One interesting case that was talked about in the article was a mother who tried a variety of alternative biomed treatments for her son in addition Lovaas-style ABA. The alternative treatments were certain diets involving only white food. At other times the mother administered electric shock in order to kill any parasites or yeast that she thought her son might have. Also bowel cleansing and liver stimulation treatments were used that had been recommended by a naturopathic doctor. (the article does not say if this was a DAN doctor or DAN protocol or not). The child regressed academically. The mother claimed that it was due to the discontinuation of the child's lovaas therapy, while the school district claimed that it was the naturopathic treatments as well as the child's insufficient diet. The hearing officer did not rule in either party's favor but ordered that the child receive testing and evaluation at a local children's hospital.
In thinking about the school districts willingness to cave in to parents' demands for treatments in order to avoid litigation in the Vorhees township, it must be remembered that New Jersey has the highest prevalance rate of autism of any place in the country. One interesting study might be to assess the litiginous of parents in New Jersey and the number of lawsuits that occur there as opposed to someplace like lets say Alabama where the prevalence rates for autism are substantially lower. Some people have suggested that parents move to New Jersey in order to obtain better services for their kids in great numbers because they have more comprehensive ABA and other special ed services there. The 2007 report published by the CDC suggests against this, claiming that the majority of autistic children receiving services in New Jersey were born there. It does not rule out children within New Jersey moving to other school districts though or the likelihood of litigation in New Jersey and possibly other factors.
Furthermore we seem to see a pattern here between a variety of special education law supreme court decisions that would make it easier for parents to obtain certain types of treatment for their children throughout the 1990s and a corresponding increase in autism diagnoses. One must wonder if this temporal relationship can be cause and effect. So far no one has shown any environmental reason for increases in autism diagnoses in spite of the insistence upon it by the folks at the Age of Autism webpage and other places. Much time and energy has been spent trying to see whether or not vaccines are responsible for an autism increase with one study after another showing that vaccines had nothing to do with this. James Gurney at the university of Minnesota published a paper showing a huge increase in autism diagnoses in correspondence to changes in federal and Minnesota state special education laws. Perhaps it is time for more study on the relationship between changes in the legal system and increases in autism diagnoses' Food for thought.
Monday, July 28, 2008
humorous quote(s) to take sting out of celibacy.
I am over 50 years old, somewhat overweight and have no job. My prospects for finding romantic bliss are not too promising. However, who says we autistics have no sense of humor? What a rotten stereotype some people seem to make about us. Therefore, I can show that I have a sense of humor and can make some light out of a bad situation, so here are a few interesting quotes and quipsabout sex as they could pertain to autism that I encountered some time ago that put a smile on my face. Hopefully they will put a smile on yours too.
First there is the story of the autistic adult virgin who went on a date and thought he was going to have sex. He asked his date if she brought any protection and she nodded and pulled out a switchblade.
Lord Chesterfield on sex: The pleasure is momentary, the position ridiculous and the expense damnable.
Disraeli on marriage: Every woman should marry but no man.
Here's a good one from the late George Carlin: The celibate autistic can always remember that sex has its consequences. When Hitler's mother spread her legs out that night, she prevented about 15 million other people from spreading their legs.
Truman Capote on Masturbation: The good thing about masturbation is you don't have to get dressed up for it.
Woody Allen on Masturbation: Don't knock it, at least it's sex with someone you love.
Or the one about the autistic guy who was only capable of concrete thought. His dad told him about the birds and the bees. He ended up going steady with a woodpecker until he was 21.
Charles Bukowski: A man can go without sex for 70 years, but he can die in a week without a bowel movement.
Well that's enough, have a nice day all :)
Friday, July 18, 2008
JB Handley and John Best pull a rabbit out of Neurodiversity's hat
All the more delicious is the irony of the well known adversarial relationship between John Best and Amanda Baggs.
As par for the course of absurd statements that seem to appear from time to time on age of autism is Handley first stating that because gene therapy involves single genes and autism genetics is multifactorial that this makes it unlikely that gene therapy will be able to do anything for autistic people in the foreseeable future. Be that as it may, Handley then goes on to use the apples versus oranges comparison of autism and down's syndrome that the neurodiversity people make with the questionable statistic of the 90% abortion rate of down's fetuses that neurodiversity afficianados spout like whales. He then goes on to contradict himself and make the ill-informed statement that Down's syndrome involves a single gene. JB you might be interested to know that Down's does not involve one gene, it involves an abnormality of an entire chromosome, namely three 21st chromosomes instead of two. This is so different from multigenetic etiologies, it is not an apt comparison. If autism involves multiple genes instead of one chromosome this makes the idea of prenatal screening anytime in the foreseeable future pretty far fetched. Like your detractors in the neurodiversity movement you don't seem to realize this.
Interestingly enough, one of Handley's commenters on the age of autism blog disputed the 90% stastic about Down's syndrome that he and the neurodiversity people quote religiously, giving some evidence it was more like 62%. So how many autistic fetuses would really be aborted?
One can go to http://www.autistics.org/ and see that the people there had this same idea a long time ago when they look at the cartoon about CAN.
I guess Amanda and her friends there have no plans to sue the mercury militia people for ripping off their idea.
I seem to remember there was some research on Fragile X recently that would dispute the ideas of these two fringe organizations. Wish I knew more so I could comment, but the irony of the war gets sweeter and sweeter. Course no reason why amino acids in a gene's or multiple gene's DNA could not be rearranged somehow to avoid certain mutations that could predispose one to autism. Course admittedly that is a long way off but neither of these two groups don't want to acknowledge this idea. There is also the idea that some sort of diet could be developed for an infant vulnerable to autism due to a genetic metabolic error. This is what happens in phenylketonuria, where a diet free of tyrosine can prevent retardation in an infant. I seem to remember some babies with phenylketonuria have been considered autistic.
Maybe someday I will be able to do more research to dispute the idea, but my autism is too severe for that right now.
However, once again I can have a good laugh at the ironies of this ongoing war between the two groups to inject a little humor into my somewhat difficult life.
Wednesday, July 16, 2008
Will The Real Autistic Please Stand Up
Dr. Sowell states in his article that he believes many of the children diagnosed as autistic are in reality just late talkers and are not autistic. He also talks about autism and late talking child researcher Stephen Camarata at Vanderbilt University. Many of the parents of late talking children that Dr. Camarata comes into contact with have been told to get a diagnosis of autism for their children in order to be eligible for government services including speech therapy. Dr. Sowell speculates that this may be the possible reason for the huge increases in autism prevalence that are being reported. He also talks about research done by Ellen Winter of Boston College who finds among children who score very high on standardized IQ tests, huge obsessional interests and the desire to be alone and isolated. Interestingly, these are characteristics that have commonality with autism spectrum disorders, particularly asperger's syndrome.
Dr. Sowell correctly (at least in this blogger's humble opinion) states that the parents and these children need to be spared the trauma of these misdiagnoses. Much money will be spent on unnecessary treatments and the children may suffer needless emotional issues.
It seems to me that this very interesting article has many implications for many of the issues that have been bandied time and again in the autism community.
Sowell has written about Albert Einstein, the favorite role model of various neurodiversity afficianados, who, at least in some instances, want to make autism into some sort of romantic thing. Since Einstein followed many of the same patterns of the late talking children that Sowell writes about, this is one of the number of things to suggest he may not have been autistic after all. Therefore using Einstein as one of the arguments against trying to cure autism has no bearing. Also, the notion expressed by some neurodiversity adherents that autistics can do just fine when they are older loses its credibility because of this. These late talkers who are likely not really autistic will only end up being a gun with blanks when used as ammunition by the neurodiversity community for promoting their misguided agenda.
Dr. Winters research also may suggest that some persons who are diagnosed as having Asperger's symptom, may be engaging in just normal manifestiations that are a commonality in certain children without disabilities but merely have high IQs. It seems for this reason a diagnosis of Asperger's should be marked "fragile, handle with care". Perhaps many of these so-called aspies who often flock to neurodiversity are not really on the autism spectrum at all.
What about persons at the other end of the extreme from neurodiversity, for example those who advocate treatments such as chelation and/or ABA as the salvation of those with autism? What can these late talking misdiagnosed children mean for their misguided agenda? Thomas Insel who heads the NIMH has recently given the greenlight for a controlled study involving chelation of autistic children. Is there a logical reason to do a controlled study on chelation? Study after study has shown no association between mercury and autism. The studies which show an association may have certain problems, such as the Geier's use of the VAERS database to support their findings. In this database people have entered that their children became Wonder Woman or The Incredible Hulk from vaccines and it was accepted. The fact that Mark Geier seems to have conflicts of interest in that he has filed patents for Lupron as an autism treatments and I think a couple of other patents? The fact that in his correspondence to me he claimed the reason for increased prevalence of autism in California between birth years 1970 and 1990 in spite of the fact there was only one thimerosal containing vaccine was in part due to increasing uptake of the DTP vaccination. Yet Dr. Geier cannot explain the absence of a pertussis decrease which would have had to have been of a much huger magnitude than the corresponding autism increase. He also claimed the number of shots had increased from 3 to 5. Yet this man who claims he is an expert on vaccines should know that the fifth shot is a booster shot given at age 5, which would be inconsequential for a child getting autism. Also the results of the Palmer study, which tries to show a relationship between the percentage of kids with autism and how close they live to coal burning plants in Texas are questionable. Though I have not read the study, Michelle Dawson on her comment board claims that there were only four years of exposure to the coal plants that were studied, yet the numbers include children from ages 3 to 18. Also Palmer does not control for children moving into the districts and presumes they were all born in the school districts where the coal producing plants were. If there is any legitimate association between any other heavy metals and autism I am unaware of it. There does not seem to be any evidence for trying chelation. Yet, the demand by parents is so great for easy quick fix solutions for autism they are willing to try anything. Some of these parents claim that this has produced miraculous recoveries for their autistic children. Assuming that Dr. Sowell is correct is it possible that some of the children who underwent chelation were not autistic in the first place. Perhaps they were just late talkers. This would negate any success claimed from chelation, either for the study that Dr. Insel has given the thumbs up for, any study to be done in the future or any parent who follows this and other DAN protocol treatments who claims a "recovered" child. In at least some cases, it is quite possible their child was a late talker.
Of course, the solution touted is controlled studies. Ivar Lovaas' 1987 study is touted as scientific evidence for the efficacy of ABA because the control groups and the experimental groups were supposedly identical at intake. Yet, there were problems with this study. The experimental and control subjects were not randomly assigned and there are huge discrepancies between the two groups. There is a ratio of autistic males to autistic females of 4:1 that is consistently found on average in various studies. The ratio of boys to girls in the experimental group in Lovaas 1987 was about this. There was near parity between the two sexes in the control group. Most of the literature shows that girls are often more severely autistic than boys, particularly in the low functioning groups. This would seem to negate the credibility of Lovaas 1987. It was also revealed that one of the 19 controls in Lovaas' study had Rett syndrome, a very unique autism subtype that is found almost exclusively in girls, so this person would likely have had a poor prognosis regardless of what treatment was done. This girl was reported in another study that Lovaas published on the ineffectiveness of ABA in Rett's. There were two other girls in the Rett's study, one of whom lived inNorway. The other two girls were both identified as being in the Lovaas Young Autism project that was going on at UCLA at the time. They both underwent 10 hours a week of ABA, the same amount of ABA that was given to all 19 subjects in control group one of Lovaas' 1987 study. So, a very germane question is were there one or two girls with Rett syndrome in the Lovaas control group. If only one of the girls but not the other was in the control group, this opens up other questions. What other types of research was lovaas doing at the time. What other studies did he do where subjects were receiving ten hours a week of ABA and not 40 hours a week?
Also, the results of Lovaas' study were highly dependent on the use of physical aversives, such as hitting and electric shocks and food deprivation. The Hughes act of 1991 outlawed the use of aversives in the state of California where I live and where Lovaas did his research. This means that ABA without aversives is marketed dishonestly by special educators. It also means that the science of ABA is incompatible with U.S. special education law that offers ABA as post and parcel of a "free and appropriate" education for autistic children at least in California and other jurisdictions where aversives are banned.
Probably a good number of parents of autistic children report recoveries or at least fantastic results due to ABA therapies with their children. Is it possible that at least some of the positive outcomes of children who undergo this therapy is due to the fact that they are not really autistic but are late talkers?
If there is someway to control for this confounding variable that may result in reports of favorable prognoses for autistic children and the pie-in-the-sky claims of certain neurodiversity adherents it should be done. Dr. Sowell in the article claimed though he is an economist and not a psychiatrist, psychologist or chelationist said that because of this he could produce high rates of recovery for autism. These are indeed points to ponder.
What about people who really are autistic rather than late talkers. Is it possible for them to recover, at least partially? The answer would seem to be yes and yours truly would seem to be an example of that phenomenon.
In 1958 when I was three years old the intervention of choice was psychoanalysis. No one who preaches the Bettleheim gospel is taken seriously nowadays. Yet during the first year I underwent psychoanalysis in the late 1950's, I went from being a severely nonverbal autistic to being verbal, having normal intelligence and to a large extent recovering, though definitely not 100%. My psychoanalyst took full credit for my partial recovery claiming it was totally because of her treatment.
Hopefully late talkers and spontaneously recovering autistics will be taken into account before ABA, chelation and neurodiversity are taken seriously.
Sunday, July 13, 2008
Back from ASA 2008: My Adventures in autism
It first started out with my sitting next to a woman named Enid on the plane. She is an employee of Johnson Mayer who was doing a presentation for them on software for autistic children. We struck up a conversation and I was interested to find out that she lived in Colorado at one time and worked with Bill Bernard, the son of the renowned Mercury Mom Sallie Bernard.
I got to the conference and met my friend Stephen Shore, the autism conference phenomenon. I also met my friend Adam who was there, whom I had not seen since we first met in person in Nashville, Tn at the ASA conference there in 2005. He was 20 when we first met, now he is a more mature 23 and he did look a bit older and seemed to be able to talk better with more emotional maturity then when I remembered him. He boasted about some sort of social pragmatics program that his speech therapist was doing with him which he seems to believed helped him. Though I am nearly his dad's age, we chat on AOL all the time and sometimes on the phone and I feel that I know Adam very well in spite of the fact that I have only seen him in person a couple of times. He lives in Miami so he was just a couple of hundred miles away from the conference. I always bug him about certain girls and persuade him to try to get a job working at this local supermarket chain in Florida. I have a sort of uncontrollable compulsion to talk about these same topics with him over and over again due to my autism. He does not seem to mind too much and that makes me happy I can have a friend with whom I can do this and get away with this. Very few neurotypical people would tolerate such behavior from me. I also renewed my acquaintance with Cheri Cary, the president of ASA's San Diego chapter. She has a severely autistic son who is age 10 and does not speak but uses an adaptive communicator. I have never met her son. This is always a problem with going to these conferences. The autistics I meet are usually high functioning and I don't get to meet a very good sample of persons on the spectrum. Unfortunately and ironically, the more severely autistic people are left at home with caretakers and are considered too handicapped to attend the conference.
I also saw my friend Gail Fitzpatrick and her kids Bridget and Jan Rankowski. Bridget is a tall attractive 19-year-old redhead, very friendly to everyone. Jan gained a certain amount of notoriety a few years back because he was excluded from playing on a public playground some years ago due to behavior issues caused by Asperger's and his mother filed a lawsuit over it. The lawsuit got national media coverage. The suit is now over and Ms. Fitzpatrick and her children are glad to be out of the limelight. Jan is now 13 and has a rather pleasant sense of humor that I enjoyed. Bridget feels that she is somewhere on the spectrum also. Though I wish to cure autism, they are among the people on the spectrum that I enjoy as well as others. So much for neurodiversity's stereotype of me and other pro cure people about hating autistic people just because we hate autism in some individuals. I still remember laughing out loud when i read in the newspaper about Jan telling the school principal about how obese she had become recently. I never dreamed that a couple years later, I would get to meet Jan and his family and get to know them somewhat.
The first keynote speaker was Dr. Robert Hedron of the MIND institute. He gave a talk about the schtick of there being an autism epidemic. Seems everyone who works at the MIND has a certain political position about autism's true prevalence rising in spite of the limited evidence of this fact. Hedron also stated the completely fallacious position of autism's prevalence being thought of as 1/10,000 as recently as 1993. Only one study has shown this and it was Treffert's study which was published in 1970. The MIND institute seems to want some sort of media recognition in the way they play with the numbers. Dr. Hedron also talked about the ongoing CHARGE study which tries to correlate certain things about autism and genetics as well as other activities by the MIND institute. Temple Grandin still had not arrived, though she would be the final keynote speaker, she would not be at the conference until the next day.
After Dr. Hedron's talk I again saw Steve Edelson who runs the ARI institute in San Diego and is one of the board members as well. He seems to be Bernie Rimland's heir apparent. He was always nice to me, in spite of the fact that I have always expressed cynicism about what ARI does and about the DAN protocol in general. He was talking to James Adams, another member of ARI (on the board of directors) and when I saw her nametag, I did a double take, Lynn Redwood. I introduced myself to Ms. Redwood and gushed a bit, due to her celebrity as being the ying to Sally Bernard's yang in terms of the most well known mercury moms prior to the Jenny McCarthy days (I also met Ms. McCarthy at another conference I went to, where my friend Stephen Shore presented but that's another story altogether). I exchanged pleasentries with Ms. Redwood and she told me her son is 14 now. I told her that I was interested in meeting a celebrity like her because I had read about her in David Kirby's book, Evidence of Harm. She laughed at that and told me that now people would call her up and ask her if she really drank the wine that Kirby had mentioned her drinking in the book. She said she had a listed phone number. I told her about my essay that I wrote showing that there was no correlation between thimerosal administration tripling of prevalence of autism in the state's regional centers between 1970 and 1991. She just sort of shrugged it off, claiming that the autism epidemic was not as simple as just thimerosal and there were many environmental factors that played a role. This seems indicative of the shift that the mercury militia seems to be engaging in now that the evidence against their hypothesis is so overwhelming.
I talked to James Adams and he seemed a nice man, geniunely interested in helping his teenaged autistic daughter with the studies on chelation that he is engaging in. It had been many years since I had studied chemistry in school and did not do very well in it anyhow. So, i asked him about the relationship between mercury and zinc as a mineral that occurs in the human body. He explained to me that zinc and mercury were similar in terms of the number of electrons in their outer shells and how they were close to each other in the periodic table. Therefore mercury could replace zinc in the body and cause adverse effects. Dr. Adams was also interested in other heavy metals as well and was polite to me though I expressed cynicism in what they were doing.
I asked Redwood, Adams and Edelson if they had ever heard of autism diva and they all said that they had. So I guess when the diva was blogging, she got quite a reputation with the most outspoken advocates of the heavy metals hypothesis (other metals in addition to mercury). I wished I knew more about the work they were doing so I could give a better evaluation of it and maybe debate some fine points with them. Then again maybe it is just as well I did not know enough of the facts to debate.
There was then a seminar about how learning affects the brain but that seminar was filled to capacity and the presenters said they would just give it again the next day for anyone who wanted it and they asked for volunteers to leave the room which was filled way to capacity in violation of Florida state fire regulation laws.
Another seminar I went to was given by Dr. Bryan Jepson of thoughtful house. The place that has acquired a bad reputation among some people because of Andy Wakefield's involvement with it. He talked about the alleged autism epidemic. How certain yeasts and minerals were associated with autism and brain function associated with autism and various treatments that could help in his opinion. One of the things that stuck out in my mind during the lecture was that he stated that there had been a variety of studies trying to determine whether or not prevalence in autistic adults was the same as the 1/150 number that was considered the rate among children and none of them had found that rate. He claimed that this was evidence for a true rise in autism prevalence. Except for the Baird study that took place in North Dakota I was not aware of any such studies that took place like the ones that Jepson was describing. After the lecture I asked him what studies those were. He admitted that he could not really think of any but that I could look on SAFEMINDS website and perhaps they would have some. This reduced his credibility in my eyes.
Another lecture was not as interesting, about autism and driving that was given by Stephen Shore, the Debaudt's, Dennis and Brad. I did not stay for the whole lecture but sort of wandered off and roamed the halls in my autistic hyperactive fashion. Though the social interaction at the conference was good, most of the topics of the lectures left something to be desired. IMFAR might be a better conference for this sort of thing and I might go there for my next conference if I go to another out of town conference again.
I hooked up with my friend Adam later, and we roamed the halls of the exhibits. I met Laura Apel, my editor at Exceptional Parent magazine who published my article on autism genetics and whether or not my suffering is necessary for society. I was pleased to meet her. I also went to the autism speaks booth. I told them there was some concern about autistics not serving on any of the boards or in any positions of power. They told me there were some sort of comittees forming within autism speaks that would include some autistic people. They also recommended that if I wanted to get involved further with autism speaks that I might contact their los angeles office and they gave me the phone number. My friend, Adam, might also be interested in getting a job with them and they gave him the number of the Miami office, near where he lives. Who knows, maybe he and I can do something about the chief complaint that comes from some people on the spectrum about Autism Speaks not involving autistic people. Of course, as I have said before on a number of occasions, those people would probably not be happy about pro-cure autistics serving on the boards or in positions of power.
Later that evening Adam and I attended a reception for Autism Asperger Publishing Company headed by Keith and Brenda Myles. I met Brenda and told her that I was skeptical of her anectodal claims that autism in females had been underreported. She claimed that she had a journal article coming out soon which would show empirical evidence of this. She invited me to read the article and send her comments. I will be interested in this, because, as far as I know, there is nothing in the peer reviewed literature that substantiates this claim made by some female neurodiversity adherents.
At this event I also got to see Valerie Paradiz and her son, Eli Wapner again after a year hiatus. Valerie has a book in print about her son called Elijah's cup. I did not read this whole book but from what I know about it, I probably would not care much for it as it seems to glorify Autism Network International and the rest of the neurodiversity movement. Valerie is now on the board of directors of ASA. She is another successful person, a college professor in New York, who claims to have somehow discovered that she has autism after her son's diagnosis. This sort of thing bothers me because I feel it trivializes the great difficulties I have had in my life because of this disability which I consider to be a great affliction. So, if you include both Stephen Shore and Valerie as persons with autism, ASA has two spectrum members on their board of directors, so maybe this will make those people who complain about autism speaks happy. I suspect that most of the problems the vast majority of autistics face day to day are really an abstraction for Valerie, both because of her and the fact her son is tremendously high functioning in spite of having Asperger's syndrome.
The saddest part of the evening at Keith and Brenda's party was seeing Sue Moreno who publishes the MAAP newsletter and has published some of my writings. She has also published the writings of another like minded autistic named Marla Comm, who, like me, and unlike the neurodiversity crowd, really hates her autism and is tremendouly unhappy. Marla would send me email sporadically and we would exchange pleasant emails. I had not heard from Marla for a while and inquired about her with Sue. Sue then told me the very devastating news that Marla had passed away from having a very aggressive form of breast cancer, which had killed her very rapidly. I wrote about my sadness due to Marla's untimely demise in my previous post. I put on a happy face at the party and tried to have a good time in spite of this tragic news. After the party, Adam took me back home in his car. Due to his autism, he had a rather hard time finding the Gaylord Palms, the hotel where I was staying as well as where the conference was being held. Finally we managed to find it.
The next day I went to one of the more interesting lectures which was given by Dr. Katherine Rice of the CDC as well as two of her colleagues whose names i don't remember. She is the person who wrote the CDC report last year, reporting a prevalence find of 1/150 individuals with autism among 8 year old children in various metropolitan areas of the United States. After the lecture I asked Dr. Rice about what Bryan Jepson had said the previous day, asking her if there were studies that could possibly locate autistic adults at the same rates as children. Then the question of environmental factors leading to an increase in autism rates could be ruled out. She said that other than the Baird study done in South Dakota, there were really no such studies and they would be hard to do, because most of the 8 year old children presented in special education schools and clinical settings where most adults would not present. She said that she might be interested in trying to find a population like this if funding could be done. I asked her about my own theories about a temporal relationship between changes in special education legislation and increases in autism prevalence. She said that this was one thing to consider but one of the problems with this was that the autism rates would have plateued but they did not plateau after the special ed legislation was enacted. Then I asked about various environmental considerations and whether or not the higher rate in New Jersey could be attributed to environment or perhaps New Jersey having a high level of services. She repeated what I knew already from reading the article last year, that the speculation about whether people moved to New Jersey to obtain better services was not really the case as most of the autistic children that were surveyed in New Jersey had already been born there. As far as anything else being the cause of New Jersey's high prevelance rate or whether there was something in the environment mediating these increases in autism she gave what seemed to me the usual scientific hedge and shrug of the shoulders. She gave me her card with an email address and invited me to correspond with her.
Later that day I happened upon Lee Grossman who was the president of the Autism Society of America and talked with him for a while. I was still thinking about the question that Michelle Dawson posed to Autism Speaks about the 1.5 million autistic people in the United States and where that figure came from. He said he had not heard of Michelle but what might interest Michelle is that he claimed that it was Autism Society of America who originally came up with the 1.5 million figure. This figure was arrived at when the prevalence of autism was thought to be about 1/250 persons and based on what was thought to be the population of the U.S. at that time. Grossman admitted to me that this was a rough estimate and was not thought to be indicative of what the true number was. It was a number to be given to the CDC and other governmental organizations to debate and ponder. Then the other organizations like unlocking autism and autism speaks just borrowed the figure that was originally made by the autism society of america. That was interesting. I doubt it will satisfy Michelle's non-moribund curiosity.
Finally Saturday, the last day of the conference arrived, and what most of the attendees were awaiting with baited breath, Temple Grandin being the keynote speaker of the day.
Grandin's lecture was delivered in her usual monotonic style and her strange sounding voice. Some of the topics were new and interesting, others were just a rehash for those familiar with Grandin's writing. She again, talked about Einstein and Gates being autistic. She seemed to have changed her tune from stereotyping the majority of autistics to be visual thinkers as she is. She gave different types of thinkers, visual, nonverbal and the category that yours truly would most likely fall into, very verbal but bad at motor activities, drawing and the like. She also showed some slides of her scanned brain compared with a normal control. i don't remember what the exact findings were but it was a study done by Nancy Minshew and some other persons whose names I don't remember. She talked about her squeeze machine. People on the spectrum needing to pursue interests and studies to find jobs and plan for careers. She also talked about how manners were pored into people during her youth in the 1950s and how times had changed. She showed an interesting slide, showing the Lone Ranger and Tonto, entertainment icons from her youth with a slide of Brittany Spears to show how the behavior of media personalities had changed over the years. Another interesting thing I remember about her lecture was her not infrequent use of the politically incorrect term 'normal' that just about everyone else has now seemed to have abandoned.
I got to meet Grandin and shake hands with her. She was very unfriendly and perfunctory. I don't know if it was due to the fact that she knew who i was and remembered our phone conversation that took place about 16 years ago and the fact she might have known that I have written some unfavorable things about her in some of my writings. Also, American Normal, the book by Lawrence Osborne quotes me as saying some unfavorable things about her. Some of the things I did say, but Osborne was not entirely accurate in what he quoted me saying. She asked me about what I was doing now, and I had told her that I had worked sporadically as a medical transcriptionist for a number of years, but due to difficulties in the job and being fired a lot I had retired for the time being in my early 50s. Grandin's response was predictable. She said that medical transcription from what she had heard from at least a couple of other people with autism who had tried the job was not a good occupation for an autistic person. So much for being able to contradict some of Grandin's stereotypes as I thought I had before I left the profession. Steve Edelson interjected and told Temple that I had written an article entited Neurodiversity just say no and I told her that while I wished there could be a cure for autism that I realized she favored a middle ground. She wanted a cure or at least to do something about low functioning autistics, those who are mute and who engage in tantrums and self-mutilatory behaviors but she wanted to leave high functioning autism alone.
She then spent a bunch of time talking to my friend Adam, who recently finished college. He wanted some advice on how to best find a job and a suitable career and Grandin gave him some suggestions about getting in the back door of a place, like for example one job that Adam had applied for was an evidence collector in a forensics lab. Grandin suggested that he try to get his foot in the door by asking if he could volunteer, even if he had to clean glasses or something like that. She talked about Katzenberg who started out in the mailroom and then became a media mogul with Stephen Spielberg at dreamworks.
It was a fun conference, with good social interaction with some fun people, so for that reason I had a good time. Though due to expense and lack of interesting lectures I probably won't be returning next year when the conference is held in the Chicago area or the year after when it is held in Dallas. If I can ever afford it I might try to go to an IMFAR conference for my next autism "field trip". My friend Matthew Belmonte has thought it would be a good idea to have a panel of autistic people talking there with me on a panel. Also, I know my old pal Michelle Dawson goes to that one. I might run into her there. Now that would be interesting.
Thursday, July 10, 2008
In Memorium: Marla Comm 1956-2008
Well, recently I finished reading the book Severe Autism Support Denied by Leonard Jayson and my e-mail pen pal, Marla Comm. The book is about Marla's life as an autistic woman in Montreal Canada and all of the hardships that she has to endure because of her autism.The Theme of this book is in stark contrast to the more upbeat stories from people like Jenny McCarthy and Christina Adams and Catherine Maurice and others that I wrote about in my previous journal entry. It shows the negative side of autism, even in those who are college educated and by many standards high functioning.Marla lives in Montreal Canada, got a bachelors degree in Math and has a small part-time job as a library assistant. She is too impaired to take care of household chores and other matters and needs support in these areas which she cannot get. Montreal is a very bad environment for her due to the cold weather and the political situation there. Marla is English speaking and because of her disability was unable to learn French. The French who dominate Montreal are trying to suceed from Canada and do not like the English, especially those who speak no French. This is sort of like living in a foreign country and makes Marla isolated and her life difficult. I read about Marla in the MAAP newsletter and started corresponding with her some years ago and we have continued this correspondence via email. Marla has very little money and sometimes has to eat junk food to survive. She also suffers from some of the motor coordination problems that I suffer from so I was very interested to read about that. Marla suffers from severe global burnout after years of struggling in the unsuitable setting of Montreal without any supports.The book has some technical deficiencies as Jayson is not a professional author butsomeone who penpalled with Marla as did I and some other people. Marla is not a professional author either and suffers from ADHD as a condition co-morbid with her autism and therefore has organizational problems. Because of this when Jayson asked her to proof his writing for organizational problems Marla said she could not find any. There are numerous repetitions in the book and the way some of the information is presented is disorganized. In spite of this I enjoyed reading this as the negative side of autism hits home with me.Unfortunately, this is the type of book, along with David Miedzianik's stuff and the more negative things that I wrote will not go very far and will be censored by the powers that be. Marla's story is a story that needs to be told. However, people really want to hear success stories and hear that their kids will grow up to be another temple grandin or stephen shore. Not a David Miedzianik, Marla Comm or Jonathan Mitchell.If you happen to read this journal entry and you are interested in reading some of the negativities and hardships that a person with autism has to endure, I recommend you order the book from amazon.
She was among the few high functioning internet autistics who had the good sense to realize what a horrible disability autism is. I first started corresponding with Marla by snail mail several years ago after first reading about her in the MAAP newsletter, then we exchanged e-mail. She will be missed greatly.
Sunday, July 6, 2008
Going to ASA this week
Also my friend, Stephen Shore, the fast rising superstar of autism conferences, will be there and I will get to see him again. Not sure who else will be there. Hopefully I will get to have some good social interaction with some people with whom I have a common interest in autism. Hopefully will have a good time. Not sure it will be worth money and time of going there again, so i might not go again, but going this time around.
I will probably write a blog entry which will be a brief summary of my adventures at the conference, after i get back on July 12