Tuesday, March 30, 2010
200th Gadfly post-Ari Ne'eman facebook support group
Some character called Jeremy Block, one of the most prolific posters on this group, was nice enough to give me and my previous post on here about the senate hold on Ne'eman's appointment a mention and a link on the facebook page; I am glad because it makes me know I am making an impact regardless of the outcome of Ne'eman's appointment. This person stated that I undermined my own credibility because in one short segment of the post (and one post out of multiple posts dealing with Ne'eman's pending appointment) I mentioned Ne'eman's association with hatemongers Harry Williams and Clay Adams, stating that we could judge him by the company he keeps. Though I made a brief mention of these individuals Block claimed my post was about them rather than Ne'eman. Naturally Block had no arguments against the very solid evidence that I have provided that Ne'eman definitely at one time (and probably to this day) does not believe autism or Asperger's are disabilities yet desires to serve on a disabilities council. He has no argument about why someone who does not want people cured of their sickness when the combating autism act has been passed which has as its aim the curation of autism, should serve in any government post dealing with autism. He has no argument about why someone who has never worked and is so ignorant of the problems of persons on the spectrum have in the workplace that they say this can be solved by eliminating social pleasantry as a criteria for hiring should be on a government council that in part deals with policies to help disabled people obtain employment.
Though I believe Ne'eman's association with vicious bullies is a legitimate talking point, this was just one minor point in the multiple arguments I have given against Ne'eman's confirmation and Block was trying to make out like I was making this the main argument.
Even worse than Block were two individuals, Zoey Roberts and Chelsea Boon who weighed in. These young ladies only made comments attacking me and did not even bother to refute any of my facts arguing against Ne'eman's confirmation. Ms. Roberts stated that I was a known troublemaker and lumped me in with the infamous John Best. Ms. Boon stated that she did not feel sorry for me and that nothing I did was good enough for myself and I made no effort to self-improve.
Since they saved me the trouble of having to readdress actual arguments favoring Ne'eman's appointment, given there is no legitimate argument for allowing Ne'eman to serve I will address their personal attacks briefly.
Apparently Ms. Roberts' definition of a troublemaker is someone who actually has the temerity to refute the hatred and lies and propaganda that neurodiversity espouses regularly on the internet. If that makes me a troublemaker so be it. Apparently someone who expresses agreement with them is not a troublemaker only someone with an opposing viewpoint.
Ms. Boon who has never met me, knows nothing about me has taken it upon herself to judge me and my character. She does not know how hard I tried to make a living for nearly 3 decades, what it was like being canned from jobs and having to start all over again, having the phony government intervention in the California state department of rehabilitation (which Ne'eman naively promotes) shaft me and all of the other abuse I had to endure. I can certainly say I tried very hard, took coursework in medical transcription, computer repair, programming in order to better myself. But making ad hominem and specious arguments out of ignorance is par for the course for neurodiversity. This is one of the main reasons I oppose Ne'eman's appointment. Contrary to Ms. Boon's baloney I have spent more years making an effort to improve myself and make a living than Ne'eman has been alive. Again, anyone who would make the absurd statement from a figurative ivory tower that the solution to autistic unemployment is to eliminate social pleasantry as a criteria for hiring certainly has no understanding of the problems in the workplace that someone like me faces. They are totally unsuited and unqualified for the top government position in disability policy guidance. I never asked Ms. Boon or anyone else to feel sorry for me and if she feels being able to make a living, not being celibate and having good motor coordination and not being forced to self-stimulate all the time and being able to get things done other than some blog posts I write is asking for too much that is her problem not mine.
I see from looking at these profiles that two of these people are still students at a university. I suspect, like Ne'eman, they have only lived an ivory tower existence and are ignorant of the world of work, so I suppose their supporting Ne'eman is par for the course.
Well congrats to autism's gadfly for the milestone 200th post!
Addendum: Again I have written to senators Boxer and Feinstein, in light of these new developments, urging them to reject confirming Ne'eman to the post.
Second Addendum: If anyone looks at the link to the ne'eman facebook page and is curious as to why the personal attacks, Ms. Roberts and Ms. Boon leveled against me are absent, the reason is that Mr. Block deleted them and then wrote the following to me:
If the author is reading this, I am sorry you felt it necessary to write about me in such a negative way in your blog. ... See MoreI'm glad you care deeply about the issues you write about. If you are looking for some kind of argument escalation on the issue, you won't get it from me and it is my hope you will not get it from anyone else in this group.
Yesterday at 8:25pm
But you can believe they were actually there at one time.
Saturday, March 27, 2010
senate delaying Ne'eman confirmation?
Whether the hold is related to the criticism of Mr. Ne’eman (pronounced NAY-men) and what it might take to lift it is unclear. the article stated.
I have noticed on looking at the stats of my blog that I was getting some hits from the United States senate seargent at arms URL. I can only hope that gadfly's pointing out that Ne'eman is being nominated to a disabilities council in spite of the fact he clearly does not even believe that autism is a disability or he considers himself disabled, yet presents himself as a disabled stakeholder could be the reason. Of course greater powers that be, such as autism speaks board member Jonathan Shestack may also realize that this is a bad nomination and may be intervening Shestack stated:
“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t,” said Jonathan Shestack, a co-founder of the advocacy group Autism Speaks, whose mission is to help finance research to find a cure.
This statement on Jon Shestack's part is interesting in light of the fact that he is on the board of directors of autism speaks, an organization that solicits for donations and advertises that it will go for a cure for autism, yet has helped authorized nearly half a million dollar funding for rogue neurodiversity researcher Laurent Mottron who has said that curing autism is nonsensical and has also said that autism is not a defect but merely a difference and has even said that autism is not harmful. Shestack justified Mottron's grant by saying that although the man made statements that were politically annoying he was doing work that was very important for nonverbal autistic persons. This is likely nothing more than wishful thinking on Shestack's part as he has a nonverbal son with autism who is about age 18.
One possibility is some very right wing republicans who have contempt for Obama are merely holding up the nomination for political reasons and it has nothing to do with Ne'eman's neurodiversity beliefs. However, another line from the article makes that scenario less plausible:
Mr. Obama’s seven other nominees to the council were confirmed this month. But parliamentary procedure in the Senate allows one or more members to prevent a motion from reaching the floor for a vote by placing an anonymous hold on the action, which an official with knowledge of the proceedings said had been done in Mr. Ne’eman’s case
This likely is a propitious sign that perhaps at least a few senators have seen the light, and see what a scam ND is and how harmful it is for persons with autism and their families. Had it just been a republican rebellion against Obama the other seven nominees most likely would not have been confirmed.
The article goes on:
Mr. Ne’eman, who grew up in East Brunswick, N.J., has said his condition caused him to be bullied in high school. His social stress was so great, he sometimes picked at his face until it bled. He was eventually transferred to a school for students with developmental disabilities.
This is interesting in light of the fact that we can judge Ne'eman by the company he keeps, such as ASAN members in good standing Harry Williams and Clay Adams who have spent extensive time bullying me on the internet yet Ne'eman has never censured these individuals in any way let alone expelling them from ASAN internet lists and other ASAN activities. I do know that Ne'eman had some sort of special education experience during my correspondence with him a couple of years ago, but I don't remember the exact circumstances. The statement that he was transferred to a school with developmental disabilities makes me wonder if he was ever mainstreamed before the age of 14 unlike myself, excluding one regular education private school that I was expelled from after about a half a semester due to my serious behavioral problems. So I wonder if Ne'eman could know what it was like to have gone to special ed schools for the greater portion of his childhood.
I can only hope that this is an omen for a longshot senate rejection of Ne'eman's confirmation. I expected Ne'eman to be confirmed routinely, as I did not think anyone (not even John Shestack or individuals at Age of autism) had the stature or the numbers to actually affect the senate's vote on this type is appointment. NDC appointments are probably rubberstamped in most cases.
I suspect Ne'eman will be confirmed in the end, but I can only hope that I am wrong. I certainly hope that during this hold up of Ne'eman's appointment that the senate will ask Ne'eman about his "difference is not disability" statement which he later edited. He will have a harder time covering up or editing his post that I pasted a couple of blog posts ago where he stated that he did not believe that Asperger's (which he has) is a disability. I certainly hope the senate asks him how he can legitimately present himself as a disabled stakeholder on the council on light of those statements. If this were a confirmation to the supreme court rather than the NDC I can imagine the hardball questions a number of senators would be asking him.
I suspect the miracle of the senate rejecting Ne'eman's appointment won't happen, but I guess in light of this new development I can still hope and dream.
Addendum: In light of this new development, I have once again written to senators Boxer and Feinstein urging them to reject Ne'eman's appointment to the council
Saturday, March 20, 2010
My NPR interview recycled
Well, though the interview is several years old now I guess anyone who is interested in checking it out and hearing what I sound like or whatever can click on the above link or go to studio 360's web page at www.studio360.org. Also I have the interview someplace on my Jonathan's stories website which has a couple of links on this blog though I don't have the exact URL handy. I guess the interview will run in various parts of the country on various days this week until Thursday but I am not sure.
Well I guess anyone interested can check it out and/or read "The conversion" which I linked to above.
Wednesday, March 17, 2010
Ari Ne'eman:One step closer to confirmation
I happened to stumble upon your entry on a Yahoo Search for Asperger's and I'm glad I did. As a teen with Asperger's, I strongly suggest you tell your son as soon as possible. The fact is he is different. What's more, this is not a bad thing. Any individual who accomplishes anything is different. It's his right and his requirement to know who he is, and what makes him different from those around him. Furthermore,Asperger's Syndrome is hardly what one would think of as a disability. I recommend you take a look at Norm Ledgin's "Diagnosing Jefferson", a wonderful book that suggests that one of the founders of our nation had Asperger's. As I and the book can attest, it is not in spite of but because of the characteristics that set us apart from others that "Aspies", as the popular nickname goes, have the ability to do great things.
The day will come when Asperger's will be recognized for what it truly is: a difference, not a disability, and in many ways an advantage. I think you owe it to your son to talk to him about who he is and help him succeed as that person, not pretend (or worse yet, force him to pretend) to be someone else. I'm somewhat notably successful for my age and as a result I've occasionally been asked to speak to newly diagnosed "Aspies" and at a few conferences about Asperger's and special education in general. One of the things I've always tried to stress is the vital importance of recognizing the advantages of difference and not falling into the trap so many do that different is defective.
It is possible that one of the reasons that Ne'eman was appointed to this position by the Obama administration was his claim that he himself is a stakeholder as a disabled person as per his 'nothing about us without us' mantra. But Ne'eman has stated that he has Asperger's. In this statement which I have printed out and the link that I have provided, we see evidence that Ne'eman (at least at one time) did not even believe that Asperger's was a disability ergo not believing that he himself is a disabled person serving on the disabilities council, so why wouldn't it be deceptive advertising if he has presented himself as a disabled person before the U.S. Senate, claiming he deserves to be a stakeholder alongside nondisabled person on the council?
One interesting sidenote is that Ne'eman trivializes the angst of autism spectrum disorders by claiming that Thomas Jefferson was one of us. I believe I have debunked that notion elsewhere.
I have written both of my U.S. Senators urging them not to confirm Ne'eman to the post, but there is nothing else more that I can do. I suspect Ne'eman will be appointed and there is nothing I can do about it. It is very clear that Ne'eman has stated that he believes autism and Asperger's are not disabilities in the past. I think it is less likely he will be able to go into this post and edit it though as he was able to edit his essay after I called him out on it. He will now state that he believes autism is a disability for political reasons. What is more significant though is that Ne'eman will perpetuate the myth that autism is no great tragedy as he did in that PSA soundbite ironically titled 'No myths'. He will give quick fix simplistic solutions such as claiming that autistics can be fully employed if social pleasantry is eliminated as a criteria for hiring.
As some of my readers know I have been trying to get on SSDI for nearly 3 years. If anyone at all takes Ne'eman (or anyone else from the warped ND movement for that matter) seriously. People in goverment won't see autism as a problem. This means we won't get the help we need. There are some persons who have never worked such as friends Roger Kulp and Stephanie Keil who receive SSI. What if someone had listened to Ne'eman or another like-minded member of the NDC. Is it possible these two individuals would have been denied their benefits and would have to live in even more extreme poverty than they do now? Will the NDC be able to influence the direction scientific research goes in? This means that genetic research in autism will not be funded if Ne'eman has his way, something that could help future generations of autistics. Does this mean we will lose a diminished capacity defense if someone commits what would be a crime for a typical person due to having autistic symptomatology. If Ne'eman preaches what he did in his equality means responsibility essay, then the answer is yes. Will our prisons and institutions be packed with even more ASD persons whose behavior they might not be able to help due to their disability. Of course, Ne'eman will say that Zackery (sp??) Price should get a free pass for some reason in spite of what he wrote in his essay.
Though Ne'eman usually tries to be polite, does this mean that certain neurodiversity members such as the very nasty Harry Williams (AKA Socrates) and the nasty Marc Rosen who enjoys insulting my mother and trying to bring back the Bettelheim era as Clay Adams, Phil Gluyas and some of the more extreme vicious members of club ND have tried to do will be given a license to insult and abuse others.
Will Ne'eman only try to maintain the failed status quo as he has in the past by supporting full federal funding of the IDEA? Does this mean same old, same old from NDC and other government bodies? Does this mean the end of medicaid waivers for those with autism if it is no longer considered a disability and Ne'eman's equality means responsibility mantra extends for people providing for their own medical care as well as not being given a free pass for criminal behavior?
Only time will tell after Ne'eman's appointment is inevitably confirmed by the entire body of the U.S. Senate.
Thursday, March 11, 2010
Look, there's a kid in a cage
In light of these facts, I find this story from Australia interesting and ironic
Tuesday, March 9, 2010
spectrumite appointed to an autism speaks board
John Robison read what I wrote and offered a very polite commentary to my blog post that was his position on the manner and suggesting I might write to the body if I wanted to be considered at some point. He also elaborated on his position about a cure, equating it with abortion:
. . . First of all, as I said in response to another of your posts, I have never been opposed to therapies that address weakness in you, me, or anyone else. When working with NIH, I did my very best to vote for research that furthered the goal of finding ways to make all our lives better. What I am opposed to is the concept of autism elimination via abortion of future generations. That is what’s meant by some people when they talk “cure,” and I don’t like that. Another thing I don’t like is the idea that certain people may want to mandate therapies for those of us on the spectrum. I believe we all deserve the right to choose. Personally, I would choose to try something that offered a good shot at making my life better, but I know others would choose to remain the same, and that’s their right.With that in mind, I recognize that nonverbal autistic people present a difficult moral dilemma should therapies be available, but that’s beyond the scope of this post.
So it would appear to me that Robison is confused on the standard definition of a cure as defined by my dictionary:
To restore to health soundness or normalcy.
Though some might not like the word 'normal' and even I question its use in some instances, this is how the dictionary defines cure. It has nothing to do with abortions. As far as I know, John, has never stated that he believes autism speaks is deliberately trying to find ways to abort autistic fetuses as "the autistic bitch from hell" and other neurodiversity proponents have alleged, I have to wonder what his position on this is.
As far as imposing treatments on others. We are talking about children who are not of the age of consent. Parents have a right to consent to surgery treatments, cancer treatments for their children, so why should autism be any different according to Robison? Also, we have compulsory education for children which the government mandates but parents control.
As far as a moral dilemma for nonverbal children, then I don't see why someone serving in any capacity as an advisor to autism speaks should have a question about this. A person who is nonverbal might not be able to communicate effectively about their desire for a certain treatment even with an augmentative communication device. I am reminded of Kevin Leitch of the right brain left brain blog who stated that he would only seek a cure for his nonverbal daughter if she asked him to. Now what sense does that make? I am pretty sure the Wright's grandson was nonverbal. Jon Shestack and Portia Iversen who are members of the board of directors have a son who now nearly 18 is nonverbal. As a matter of fact I was nonverbal from age 2-1/2 to about 4, though I don't think Robison was. I believe it was a mistake to introduce Asperger's into the diagnostic lexicon and include them with persons on the autistic spectrum and include them with people who had a speech delay. So much of the research funded by AS has its intent and interest in helping persons who are nonverbal. It is not likely that Robison prior to 1994 would have been able to be considered a stakeholder or client in these research endeavors so I find these statements at least somewhat questionable.
We also have to wonder what neurodiversity's reaction will be to this appointment. As I said before, at the risk of being repetitive, they will no longer be able to engage in angry tirades about autistics having no positions of power in AS. Will they be dancing in the streets? Of course, it would not be surprising if Robison got some of the slurs that have come my way, such as 'quisling' 'house autistic' or 'Nazi' or 'sell out;. Only time will tell. Autistic autism researcher Michelle Dawson happens to be one of the more vociferous individuals on this end. She has repeatedly criticized autism speaks for not having any autistics on the board or in positions of power. This is in spite of the ironic fact that AS has awarded a grant of nearly half a million dollars to the group that she works in, so they are certainly interested in funding autistic autism researchers including an autistic autism researcher who says that the people who raise money for her research "make her sick" and that the organization ideally wishes a short future for persons with autism.
Robison stated in the above linked to post that he hoped to find some common ground between the pro-cure people and neurodiversity and that he hoped to serve both parties as a member of this board. I must respectfully disagree with him. The goal of autism speaks is curation and prevention (not abortion) of autism. Their goals have been quite plain since their inception as well as their predecessors Cure Autism Now and the national alliance of autism research. There is no place at all for neurodiversity proponents who call cure seekers and persons who want to prevent a child from becoming autistic in the first place eugenecists or nazis at the autism speaks table and I can only wish there never will be. I can only criticize autism speaks for trying to support neurodiversity rather than work against it, such as their removal of the I am autism video from their main website and their funding of the Laurent Mottron group (which Michelle Dawson is a part of) and having Morton Gernsbacher review scientific research for AS. I wish these activities would cease immediately and that AS could sever their ties to ND completely but I suppose that is unrealistic.
Robison also gives RDI and ABA a shout out. To the best of my knowledge there have been no studies of RDI published in a peer reviewed journal. I don't think he understands all of the problems with ABA, how it is falsely advertised as having proven efficacy without aversives, the inequivalency of the intense treatment groups versus the control groups in Lovaas (1987), the lack of of adult outcomes in ABA therapy and the multitude of other problems with ABA. When CAN was in existence shortly before its merger with AS they funded behavioral therapy studies, violating their own bylaws to only fund medical research.
Of course in spite of these criticisms I believe that John Robison does have the best of intentions and does want to help promote research that will help those on the spectrum and I wish him luck in his new position and endeavor. I suppose we will have to wait and see what the outcome and reaction to all of the parties concerned in this.
Friday, March 5, 2010
Is neurodiversity judging a book by its cover?
It seems that Ms. Picoult, as have many others, has run afoul of certain characters in the neurodiversity movement. Sarah of the cat in a dog's world blog has written a blog post on this issue As well as an additional follow-up post She states that more blog posts will be written about Picoult's novel at a later date. Sarah is offended because she feels that Picoult has presented autistic people as having bizarre quirks, the autism-is-broken model as well the fact that the mother provides biomed treatments for her son and that many parents don't provide this. Also the insinuation that an autistic can only have friends if their mother pays for a social skills tutor to hang out with them. She also talks about the boy's father splitting up with the wife and the Maxine Aston syndrome about women who have psychological distress from being married to an Asperger's spouse. Sarah and her friends are also offended by the notion they wrongly believe that is portrayed in the book that autistics want to be normal. "Sadder but wiser girl" has jumped on the bandwagon and has put out a boycott list of persons who are engaging in "neurobigotry" with Picoult at the top of the list.
The "autistic bitch from hell" in one of the most bizarre comments of all seems to think that a lot of autistics will end up boycotting Picoult's works. It is amusing that anyone would believe that a #1 New York Times bestselling author would lose sleep at night because a small handful of neurodiversity proponents would boycott the book.
I would like to dissect these arguments from these few ND proponents and put them in perspective. Could the old cliche, "don't judge a book by it's cover" be operating here? When we discover in the first of the two posts that Sarah has only read the first 71 pages out of a more than 500 page book the answer would appear to be yes.
As far as the father suffering from Maxine Aston's syndrome, there is no reference in the book to the father having asperger's but rather being a computer geek who might be more prone to having an asperger's offspring. Of course it would seem that the wife did not leave him due to unhappiness of being married to an Asperger's man, that he left the wife and his two sons because he could not deal with having a son on the spectrum, admittedly another offensive notion to the ND's the claim alleged by some that autism breaks up marriages.
Does the mother hate having an autistic child? On page 157, the mother states that she loves Jake for who he is and is happy that she has found the social skills tutor who does not treat his quirks as abnormal but celebrates the way they make him worthwhile and interesting. She also states she does not wish to change the way he is, the theme throughout the book, contrary to what sarah, SBWG and ABFH say. Contrary to what Sarah says, the boy does not wish to become normal or even be cured, saying he is happy the way he is and that he might lose his intelligence or other redeeming features if the asperger's is taken away from him.
Both the boy and his mother state in the book that they do not believe that Asperger's is a disability in spite of the fact that some ND proponents have claimed I and others were mistaken when we said that they did not believe that autism is a disability. It would seem in some parts of the book Picoult is actually out neurodiversitizing neurodiverisity.
Admittedly there was one scene in the book which I enjoyed which ND proponents won't like as it showed a very pushy,overbearing neurodiversity proponent trying to convince the mother to make the accused murderer a poster boy for the neurodiversity movement in the style of Darius McCollum and other autistics accused of crimes. The mother expresses disdain for this idea and slams the door in the neurodiversitite's face.
The boy also uses the line that ND's like to use by saying I am not autistic but I am a person with autism.
One thing I did not care for was the celebrity diagnoses that Picoult offered which were questionable such as Stephen Spielberg and Peter Tork. Of course she stated John Robison in her book who is an example of someone actually diagnosed with Asperger's.
Sarah admitted to writing these blog posts before actually having read the entire book. From the comments of "sadder but wiser girl" and "the autistic bitch from hell" I have to wonder if either of these two individuals has actually read the book at all. I strongly suspect that the answer is no.
From reading the book, we see for the most part that Picoult does in fact show some sympathy for the neurodiversity movement and their positions (with the exception of the scene in the book with the pushy ND) The boy and his mother seem to have a pro-neurodiversity outlook rather than an anti-neurodiversity outlook if anything. Though I agree with Sarah that the character is stereotyped and is sort of a mixture of a person with all autistic features and not necessarily representative of a true autistic person, one must remember that this is fiction. Rainman and the boy in the curious incident of the dog in the night time were fictitious characters also. They are not supposed to represent the real world, but Picoult's imagination of what the most possibly compelling character with autism could represent to someone in order to hook them into the novel.
When I was nearly 3/4 of the way through the book and enjoying it, I decided on impulse to send the author an email and warn her that some members of the ND movement might approach her and tell her how much they dislike what she has done and urge a boycott of her books. I urged her not to listen to these people or take them seriously. I reminded her how stupid ABFH's comment was as if a #1 new york times bestselling author's sales would be affected by a few neurodiversity malcontents. I knew that she is a busy celebrity and was not sure if she would respond.
I was pleasantly surprised when she in fact did write me a nice response. She stated correctly that for every member of the ND movement who was opposed to her book there were 10 who worked to raise awareness of autism for research and were happy with the book's different is not lesser than message. That if the ND's actually read her book in its entirety they would see that was her message.
Perhaps Sarah, SBWG and ABFH can read a book in its entirety before judging it by its cover.