Monday, January 21, 2008

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 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 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.


jypsy said...

Ok, for the record. I entered this whole thing on Mr. Doherty's bog when I asked (here and again here):
"1) "A number of high functioning autistics claim that there is a consensus among all autistic persons that finding a cure for autism would be a horrible thing." - Who are these high functioning autistics who make this claim of a consensus?

You posted on your blog (here):
"Jypsy took me to task for saying that a consensus exists among a number of high functioning autistic persons feel that all autistic people feel the way they do. I conceded that perhaps this was a poor phrasing in an informal blog entry and perhaps I should have said a number of autistic persons seemed to think most (rather than all) shared their views. Consensus may have been a poor choice for a word."

I'm not going to share private email publicly to include any keywords in my statement that were not included in the blog post, I think the blog post is clear enough.

This was never about "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." I was addressing the first sentence in your post and there is nothing there about "most if not all". "A number" could be two people but I can't find evidence, and you have not supplied it, to support that even 2 people "claim that there is a consensus among *all* autistic persons that finding a cure for autism would be a horrible thing."

The examples you are going on about have little to do with the question I asked you about the statement you made in your opening sentence. They are examples you gave me of people who "seem to feel that there is a point of view that most autistics seem to have". I asked you *who* claimed there was a *consensus* among *all* autistics about this issue. It appears that the answer to *my* question is "no one". No one claims there is a consensus among all autistics about this (or any) issue but some seem to claim that many autistics agree on this that or the other issue (rightly or wrongly).

If someone does claim a consensus among ALL autistics, then name them and quote them. If not, I have made no baseless comments.

As to my sons, yes, I first told you that I had a son diagnosed with Asperger's at 9, asking you if you thought his childhood Dx was more valid than my Asperger's Dx in adulthood. I also later told you Alex was dxed autistic at 3 and had a 6 word vocabulary at 6. Why was it not obvious to you that these were 2 different people? Were you looking for or expecting me to be dishonest? If you told me you had a sister with red hair and later told me of a sister who was blond I wouldn't assume you were "giving me rather inconsistent information".

Your definition of Neurodiversity is different than that of many people, myself included, who are considered to subscribe to the "neurodiverse philosophy". You are fighting a myth. It's a total myth that Neurodiversity means we don't believe Autism is a disorder:

From : “Every now and again, someone misrepresents the neurodiversity movement by claiming that its adherents believe autism is not a disability, but a wonderful gift and the next stage in human evolution. Without fail, several pro-neurodiversity bloggers respond that they don’t believe any such thing­that yes, autism is a disability, but that it is OK to be disabled, and that neurodiversity is all about making the world a more accepting place for the cognitively disabled.” (See the comments as well)
From “Most of our potential disabilities (of which there are many)” (See the comments as well - like “If autism is not a disability, I would not be disabled by it, and all of the tasks he performs for me related to autism (waking me up on time because I cannot hear the clock, getting me out of overstimulating situations, refocusing me when I ‘tune out’ in the middle of doing something, etc) become parlor tricks- and I lose my right to take him in public.” )
From “I don’t believe that anyone using that term is implying that autism is not a disability. ”
From “In sum - with the negative marketing of autism as a fate worse than cancer, even though autism is a disability not an illness, discussing our children in pejorative terms in public, or for the purposes of obtaining public funding, and with interventions to render the child “indistinguishable” from others – does the end justify the means?”
From “Also, before you hurl “neurodiverse” at me as an insult, I’ll remind everyone that I do think autism is a disability - so be cautious before you oversimplify my views!”
From “Autism, like Down syndrome, is a neurodevelopmental disability.”

You are not the first person to set up this myth and attack it and, sadly, you likely won't be the last. I hope you come to understand what the term really means.

If you get comments you don't like and don't want to keep, they are easy to delete. If you need help, just ask, I'll instruct you how.

jonathan said...

hi jypsy, i have posted my email to you in a subsequent post where i show that I said that all was a slight exaggeration and I also show that I did back up my allegations with facts that at least some autistics (assuming a number was a poor choice of words, but i did not say many or all) have this point of view about most or all. it shows that I did give you examples from the internet and from certain books and media of this way of thinking. You have reposted my blog entry so I guess the interested reader can judge for themselves, but i think the email that i posted in the addenum shows that what you were saying on michelle's comment board about my not being able to back up my statements certainly is not true.

jonathan said...

oh jypsy, i forgot about the thingabout your son. You did not make it clear at least to me that you were talking about two different people. I don't think anyone would have any way of knowing that. Now I know differently. In your email to me you referred to the person in question as "your son" Again on Michelle's board if i recall correctly you referred to this person as "your son" I dont know how i was supposed to know these were two different people and I asked you to explain this to me. Never, contrary to what michelle said, did I ever accuse you of dishonesty, even by insinuation. I did not know what your family situation was. All I know now is that you have four children. One of them is named Alex and I guess Alex presents a different clinical picture from your boy who has asperger's, now i know that, I could not have possibly known that at the time, don't think it would have been obvious to anyone.

I referred you to Luramo's comment in the usenet group it is clear she is speaking for *all* autistics not most Antonia was an example of most because she said *usual* I referred you to Dawn Prince Hughes who states that autistics don't want a cure which suggest to me all so that statement was baseless on your part, so that is a second baseless statement on your part. The first baseless statement was that I don't back up my allegations with facts when i repeatedly cited these people to you as examples of this way of thinking. so yes, I believe your comments were baseless.

jonathan said...

hi again jypsy. I wanted to address your statement about the word "disability" One of the problems with this word is that it seems to have two definitions, the medical model where people say that is when you have something wrong with you and the social model where people have problems not due to medical condition but due to sociologic means such as discrimination. If you remember i wrote about that in my article. When neurodiversity talks about disability they often (though not necessarily always) mean the social model rather than the medical model. When I use the term disability I mean the medical model. How many of these examples you have cited use the medical model of disability rather than the social model?

jypsy said...

So you can back up your changed statement. That wasn't my point or my statement on Michelle's board. I was addressing the statement, as it stands, "A number of high functioning autistics claim that there is a consensus among all autistic persons that finding a cure for autism would be a horrible thing."

"In your email to me you referred to the person in question as "your son" Again on Michelle's board if i recall correctly you referred to this person as "your son" I dont know how i was supposed to know these were two different people and I asked you to explain this to me."

In my email I referred to "My son was not diagnosed with Asperger's until he was 9. He too may well have been diagnosed earlier had Aspergers been in the DSM earlier."

On Michelle's board I referred to ""My son was also "diagnosed autistic, nonverbal, feces smearing at age 3" (but has 12 years of fully integrated special education behind him). He does not write as well as you, nor is his speech as understandable as Mr. Doherty's son's. He hosts a blog, with my assistance.

My son does not want a cure. I think it's safe to say that fits *your* definition of "Neurodiversity". You're likely right in saying that he did not have a childhood like yours. Non verbal at 3, he had a 3 word vocabulary at 6. Overall he had a happy childhood. He also experienced all the issues I hear discussed by parents who seek to cure autism, including Mr. Doherty."

You yourself spotted the difference between a child diagnosed at 9 with Aspergers and one diagnosed at 3 with autism. You did not "asked you to explain this to me." you *stated* "It seems you are giving me rather inconsistent information about alex." Then you tell me, contrary to what I have told you, that Alex really does want a cure and I really want one for him. But this is not, even by insinuation, calling me dishonest?

I think we have different definitions for more than just "Neurodiversity". Perhaps we speak 2 different languages entirely.

jonathan said...

Hi Jypsy, if you have not read my dialogue with John Robison, I will refer you to page 3 of dawn prince hughes book second sentence which states "I and others who are autistic do want to be cured" this suggests an all statement to me. I refered you to the person in the usenet who made the offensive nazi comment who said i had an NT point of view. I referred you to the person there who said i was "the exception to the rule" that is 3 people which could represent a number so my statement was not really inaccurate in the original article. the person who said the "usual autistic point of view" did not say everyone so when including her there was a slight exaggeration on my part with the emphasis on slight.

Again, I will concede that perhaps you had a point though and I could have phrased things a bit differently and consensus may have been a poor word choice, i don't know.

As far as not knowing you were talking about two different people perhaps I could have asked you to explain, but I did not know what you meant and you made it quite unclear you were talking about two different people. Saying you are giving inconsistent information is not the same as saying you are lying or dishonest.

Saying I don't believe that you would pass up a cure for your son is not claiming you are dishonest either. If you have ever studied Freudian psychology in any detail then you would know that people who engage in psychologic defense mechanisms like reaction formation do so at a subconscious level and don't realize it, so subconsciously deep down it is quite possible you really do want a cure for your son but don't realize it. That is not the same thing as ascribing dishonesty to you. I believe that psychological defense mechanisms such as these are a reason some persons with developmental disabilities such as ASD's or down's embrace the concept of neurodiversity. This is my opinion, you are free to agree or disagree.

You are probably right we speak two languages. I think part of the problem is that persons with ASD's are often concrete and literal thinkers and you have taken some of the things i have said too literally.

In spite of our differences, I thank you very much for being the first person to comment on my new blog and doing so in a civil manner. and now i have a best selling author who was the second person. Hopefully i am off to a semi-decent start.