What IEP should stand for

Yesterday I was reading one of the multiple blog entries by the very prolific blogger Kristina Chew at autism.vox.com. She was talking about her son's IEP and some of the views she and her husband had on their son's IEP and some of the logistical problems they had being busy academic professionals in attending their son's IEP in person. They are among the many parents of autistic children whose tears for toasted snow will most likely not be fulfilled. Many of these parents, including Dr. Chew and her husband insist that ABA be included in their autistic child's IEP-a treatment that promises a coin-flip probability of complete normalcy for the autistic child. Naturally, they present no adult outcomes in the peer reviewed literature, only informally at conferences, where I am unable to look at their results. I emailed Tristram Smith, Ivar Lovaas' heir apparent, asking him if he could email details of these conferences and if they would ever publish a study presenting adult outcomes. I was told that they wanted to publish their adult outcomes but "logistical problems", whatever that means, prevented them from doing so, but he emailed me a power point file about the conference. It turned out the file he emailed me just was a list of tests they gave the research subjects and nothing else. My friend Stephen Shore suggested that I email Dr. Smith and ask him for something more, but I just did not have the inclination to do so.

I still wonder why these logistical problems would prevent them from publishing in the peer reviewed literature in spite of the huge NIMH funding they have received specifically to study adult outcomes in the research subjecs that the wrote about in their 1987 study but not prevent them from making presentations at conferences.

This sort of gave me an inspiration of what IEP should stand for: Idiotic Expectations Program.

The End

The serenity prayer

God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

The above is the serenity prayer, which is said at the end of 12 step meetings which I occasionally attend. I believe that both parents of autistic children and those who cling to a belief in neurodiversity should learn this prayer and repeat it to themselves and take it to heart in their own lives. For those of them who are either atheists or agnostics (this includes myself actually) the word God could be omitted and it could be called a saying instead of a prayer. Parents of autistic children cling to figurative opiates like ABA as a treatment that will make their children completely normal in spite of the evidence to the contrary. They cling to a belief that thimerosal causes autism, not because of any scientific evidence but rather because it gives them the hope that some sort of treatment could be found on the basis of this etiology. They lobby for flawed laws like IDEA because of the mistaken belief that their children will get some sort of benefit.

Proponents of neurodiversity cling to the flawed notion that autistics need acceptance and not cure and that if society would only change to accommodate autistics, autism would not be a problem. The autism is still there and no problems are solved by this philosophy. Many parents of autistics and most persons who preach neurodiversity would be better off just accepting the things they cannot change. Whether the parents like it or not, their children will always be autistic, these treatments and flawed theories of etiology with the promise of a quick fix won't help them. They need to accept the things they cannot change. This does not mean all is lost, they might with certain types of teaching their children and being loving parents and raising their children to the best of their abilities, but be able to help their children achieve maybe more than they would without their parents trying to do the best for them, but it will take courage to apply this philosophy. It will take courage for those who believe in neurodiversity to stop bad mouthing parents and charity organizations run by people who only want a better life for their kids. It will take courage for the neurodiversity people to stop using psychologic defense mechanisms like denial and reaction formation and to just accept that their autism is really a medical (not social) disability and not just an alternative life-style or culture.

Above all, these people need to have the wisdom to know the difference between what they can or cannot change. Though their autistic children may be able to get somewhat better and overcome some obstacles, they won't be able to function as well as the parents would like in most cases. I don't think I can comment on wisdom as it relates to neurodiversity as it would just make me too angry and I would be accused of trying to start a flame war with anyone who happens to read this post who thinks that autism is just a social disability and not a medical one and who thinks that autism research to look for a cure or at least help those as much as possible is wrong or immoral or does not need to be done, so i will let it go at that.

Again, with the God part omitted for all of the non-believers out there.

Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

Some New stuff on my website

For the few interested readers, I have started to teach myself HTML and I have been fortunate to have learned enough to add items on my web page and link them. Hopefully I will have learned a whole lot more in June after I finish my HTML course, which I start next Monday.

I have added my controversial article, Neurodiversity: Just Say No at http://www.jonathans-stories.com/Non-fiction/Neurodiv.html

Also an article about my experiences as Eric Courchesne's research subject http://www.jonathans-stories.com/Non-fiction/Corc.html

Hopefully I will get a few interested readers.

Is Autism more common in girls than previously thought

I have just received an email that on tonight's nightline, there is going to be a program claiming that autism has been underdiagnosed in girls. This has also been posted on the Age of Autism web page. The literature has consistently reported a 4:1 ratio of autism in boys as opposed to girls. The topic of tonight's nightline show is not a spanking brand new idea. This has been a topic that has been proposed many times, often by females with autism. They claim that the 4:1 ratio is a myth. That girls are more sociable than boys. They do a better job of hiding their autism. Or diagnostic substitution exists and they are diagnosed as something else. This was also proposed by Ivar Lovaas and Tristram Smith when Ralph Boyd criticized Lovaas' famous 1987 study claiming that it was not a representative sample of autistics and that the bias of having so many girls in Lovaas' control group as opposed to the experimental group could account for the results of his study. This is because autism in girls is often more severe than in boys. It seems strange to see this post on the Age of Autism's web page and in the email list that the organization unlocking autism has. The reason it is strange is because this view is usually espoused by some of their biggest detractors, the anti-curebie neurodiversity people. The neurodiversity group is often very critical of the mercury causes autism crowd because they want a cure for their disabled children with chelation therapy and other treatments of extremely dubious value. I believe these parents are well-intentioned though misguided.



I suppose I am getting a little off-topic here, so back to the original topic at hand. One of the reasons this alleged argument is so interesting is that the neurodiversity proponents at times often seem to imply that they are representative of all autistics. Sometimes they speak for all autistics. This phenomena has been noted by Harold Doherty's The Royal We post at http://autisminnb.blogspot.com/ I notice that it would seem that an extremely disproportionate number, probably more than 50% of these people are of the female gender. One can look at the postings of neurodiversity people on the internet and see how many females there are. If the allegations that autism is more common in girls than previously thought is true then perhaps neurodiversity's proponents might be more representative of those on the autistic spectrum than I thought. If these people are mistaken, then the predominence of females in the neurodiversity movement would seem to me to be problematic if they claimed that they were any sort of "real voice of autism" as autistics.org implies. It would mean they were less representative of autistics, so that their experiences would not mirror a typical autistic person, who would in reality have an 80% probability of being a male.



Though the internet seems to have a pervasive population of autistic females I know that in AGUA, the autism support group that I helped to start with Jerry Newport and some other people back in 1993 has at least a 10:1 ratio if not higher of males to females. This is greater than what is often presented in the literature. Though, some of the literature indicates that the ratio may be as high as 10:1 in the higher functioning groups as autistic females are often more severely afflicted than males as I mentioned previouslyThis is one thing that compels me not only to believe that neurodiversity is not a very representative sample of autistic people but that the arguments of Brenda Myles Smith and others who will appear on tonight's show are incorrect.

Michael Wigler, a geneticist who was written about in this month's issue of scientific american has a theory that females have a protective mechanism that would often make them the carrier for genes that could account for autism, but be less likely to give them the condition themself. Therefore, they could pass the gene on to their offspring but not end up being autistic.



Let's look at the diagnostic substitution argument that autistic females are often diagnosed as something else. I am curious as to what they are diagnosed as? Are they diagnosed having ADHD? Are they diagnosed as having dyslexia? What about stutterers? I suppose it is possible they will be more specific and answer the question on tonight's show, so I guess I will have to watch it to find out what the answer to that question is. After I watch the show, I may have to post an addendum to this post. However, this issue is of such great interest to me I could not curb my enthusiasm and had to post something about it today-before the show airs tonight. The problem with the diagnostic substitution argument is that not only has there been reported a 4:1 ratio of autistic boys to girls. The 4:1 ratio has also been reported in the above-named conditions as well. Here is one reference to the 4:1 ratio in stutterers http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1288304



This would tend to negate the diagnostic substitution of argument of myles smith and others as this would mean there would be either parity in these other conditions between boys and girls or at least all of these undiagnosed girls with autism would end up being diagnosed as dyslexics, stutterers, etc. and the ratio would at least be substantially lower than 4:1 in these conditions. If these autistic girls were being diagnosed with something else there would have to be some sort of zero sum effect. The consistencies of ratios across conditions compels me to believe no such zero sum effect exists.



The next question is are dyslexia, ADHD, stuttering etc. underdiagnosed in girls also? How do the social arguments, ability to pass, less aggressive than boys arguments hold up for these conditions? What substitute diagnosis are these people given? This would also seem to negate that argument. How would female stutterers be able to hide their condition and pass for nonstutterers? Does this mean that reading problems in girls is not noticed. I am very curious to the answers to these questions?

Temple Grandin Simon Baron Cohen theory of evolution redux

Not long ago, I commented on assertions made by both Temple Grandin and Simon Baron Cohen that autism has stayed in the population in spite of the fact that autistic people rarely have children due to an evolutionary advantage that the gene or genes involving autism confer. I have dealt with this in my article "Autism genetics: Is my suffering necessary to society" at www.jonathans-stories.com/non-fiction/autism-genetics.html . I suggested that spontaneous mutations may have played a role rather than their being any advantage to any autism genes.

I have just read the article in scientific american dealing with autism genetics. They talk about a geneticist named Michael Wigler who has collaborated with Jonathan Sebat, one of the geneticists who showed that spontaneous mutations play a role in autism. The article contains some other interesting things in addition to Wigler's assertation that spontaneous mutations play a role in autism. He also states that females may carry the genes for autism which are then passed onto their children. Wigler states that some damaged genes have a higher risk factors for males. These mutations can stay in the population and then die out after a few generations. They, persist, however, because the female carriers have modifying genes that protect them from getting autism, but pass it on to their more vulnerable male offspring. This is an intriguing idea. Not only does it seem to provide further ammunition against the arguments of Grandin and Baron-Cohen but it would also refute the arguments of the persons who belive mercury poisoning causes autism and that the estrogen in girls provides a protective effect. It would also refute the evidence of some of my female friends in the neurodiversity movement who insist that there is parity between autism in the sexes but that autism is underascertained in females for one reason or another.

email exchange with jypsy

This is an addendum to my previous post. I am posting an email that i sent to jypsy where i stated that using the term all may have been a slight exaggeration and show the several instances where i give jypsy examples from the internet and books where at least some autistics (I originally used the term "a number") seem to have the idea that most if not all persons on the spectrum agree with them, i think this will show that what she was saying on Michelle's TMOB board about my not backing up what i said was not true:

the words "consensus" into goggle or some other search engine won't yield results. I only meant that there are a number of autistic persons, including your friends at autistics.org, who seem to take the attitude that the vast majority of autistics seem to have a certain point of view. I will concede that maybe all is a slight exaggeration. The word consensus was my own phrase, no one else's, but i was just trying to paraphase the point that there are a number of persons who seem to feel that there is a point of view that most autistics seem to have. I have already given you the list of people in the usenet group alt.support.autistics who seem to feel that way, I will do so again someone named luramao, antonia pallman( ithink her last name was) and anna hayward I think here name was ms. hayward said "I was the exception to the rule" as i told you before you can go to groups in google and run my email address which i posted under in that group and probably find a lot of these posts though they are all several years old. you can read dawn prince hughes book song of a gorilla nation and she espouses this point of view in this book. John robison does in his book look me in the eye. and john michael carley on this radio show he was on espoused this point of view.

still waiting for comments a guy can't win

When I would write in my journal on my web page some people seemed to express a concern that they were not able to comment on my web page. The way my journal was set up on my web page I was not able to enable comments, though I did try with some reluctance. One of the reasons I decided to get this new blog, which I am still waiting to get my first comment on was so that all of these people who wanted to comment could have an opportunity to comment. Also, the blogspot blog on Jonathan's journal did not have the appearance of others and it did not have the archiving features and things like that. I was new to blogging with comments after I got this blog and was concerned about not being able to delete comments if I thought they were over the line and attacking so I regretfully pushed for comment moderation as I have seen done on some other blogs that do this on a routine basis. I then wrote a comment under these conditions about Michelle Dawson seeming to ascribe a lot of ideas that I wrote in an article urging people to reject the concept of neurodiversity that I never expressed in the article. I also questioned why she and her research associates could not apply their concepts that autism is not a tragedy and autistics intelligence has been underestimated etc, clinically and show positive outcomes based on research harnessing all of these hidden abilities that they allege autistics have. Then she seemed to be concerned that I would censor her comments since I had the comment moderation on. I have now turned the moderation off so that I can encourage people to comment here. Michelle still does not want to seem to comment here though I have now made every effort to accommodate her. She and her friend Jypsy are still saying things about me that are not true.



Jypsy has asked me to provide an example of baseless comments she has made about me so I will accommodate her here but not on Michelle's TMOB board. She claims that I could not back up my claims that there were persons in the neurodiversity movement who claimed that most if not all people felt as they did. This is untrue. I only conceded that saying that the word consensus may have been a bad choice of words and that the use of the term all may have been a mistake. I only said "a number" of persons in my article. This could have multiple meanings. it could mean some it could mean many. Jypsy had asked me in public blogs and private emails to back up my statements with examples. I did give her a number of examples on more than one occasion which included the writings of Dawn Prince Hughes in her book Song of a Gorilla nation and John Robisson's book look me in the eye. I also gave her a number of examples of this way of thinking that was pervasive in the usenet newsgroup alt.support.autism that I used to post on several years ago. I only conceded that I may not have phrased things as well as I could and perhaps I should have said some or certain individuals rather than saying "a number" instead of saying all maybe i should have said they ascribe this to most people or in some cases all people. This would have been a more accurate statement and i hope this clarifies it. Jypsy's statement that I could not back up my assertions is absolutely false and a baseless statement.



Michelle also is now claiming that I deliberately lied about jypsy's family. When I first started corresponding with Jypsy via email she told me about a son who was diagnosed with asperger's at age 9. Then on the TMOB comment board she stated her son was severely autistic at 3 and unable to speak. I thought at the time she was talking about the same person, so I asked her to explain these inconsitencies. Apparently Jypsy has four children and at least two sons who are different people both with different types of ASD's. I had no way of knowing this at the time. I never accused her of being a liar contrary to what Michelle is printing on the TMOB board.



Jypsy seemed to think that I had a different definition of neurodiversity than Michelle and wanted to know what my take on it is. My take is not that it is a movement attempting to acquire human rights but in reality is claiming that autism and perhaps other neurologic conditions are not really disorders but a different way of brain wiring. They are claiming that there is no need to find a cure or even medicalize these conditions in any manner and if the right accommodations are made for these people it will solve everything. I hope this clarifies things for Jypsy.



Michelle also seems to feel that I am being omniscient by stating that I believe that if people with Down's syndrome don't feel that they have a disorder and nothing is wrong with them are engaging in denial and reaction formation defense mechanisms. I only stated this as opinion and this is my assessment of the situation. I never stated it as absolute fact. This does seem to me to be the most likely explaination.



If Michelle and others are concerned about censorship because they had no way to comment on my previous blog and I regretfully enabled comment moderation when i first got this blog, I have made every effort to accommodate them. They still want to seem to attack me on their own turf and not comment on this blog here even though they can freely comment here and have their comments printed here immediately without my approval.



I find this concern about censorship most interesting as it seems to me if there is a huge pattern and history of internet censorship it has been practiced by those in the neurodiversity and anti-cure movements. This occurred on Jim Sinclair's ANI list where comments that autism was a disability or any sort of bad thing were not allowed and people would be first given a warning and then kicked off the list for a second offense. Amanda Baggs at autistics.org also engaged in this practice claiming that censorship just meant that the government would intercede and not allow anyone to print their own newspaper but they were not engaging in censorship as people could start their own lists or blogs. Well I have done that here. Also, I remember one person in the autism support usenet group, which she was only a participant and had no role in starting state that comments wanting to cure autism or labeling autism as an affliction were not welcome in "autistic friendly space" It seems to me a double standard is operating here. I suppose I will get a negative comment eventually from someone as I have just started this blog. I don't know if I will get one from Michelle or not though I have made every effort to accommodate her. Hopefully I will get some positive and supportive ones also.



In the meantime it seems that a guy just can't win.