I've just read an interesting piece by Dr. Thomas Armstrong, a former special education teacher and now, I believe a clinical psychologist, endorsing the neurodiversity model as a solution to the problems of special education students. Dr. Armstrong a couple years ago or so, wrote a book about neurodiversity. I've written a take on Dr. Armstrong's book in a previous post.
Journalist Steve Silberman, whom I'm now following on twitter, was nice enough to give this article a shout out. Mr. Silberman, for the past few years, has been writing another book about neurodiversity which I'm waiting to read with bated breath. Originally publication was slated for 2013, but I guess Silberman wants to take his time to write the book or for some other reason, the publication date has been moved up to 2014 :(.
Dr. Armstrong seems to believe that the deficit model of special education does not help students. He takes umbrage at terms like "moron", "learning disability", etc. Though the word moron's meaning has changed in recent years to insult people, at one time it was a classification for persons with severe retardation which was a non-offensive part of nomenclature.
He talks of a variety of studies that he intimates would help special ed students such as Baron-Cohen's work with extremely high functioning persons with autism. Yet in the same vein, uses classifications of persons with serious mental retardation. He cites work showing creativity in persons with bipolar disorders as well.
Armstrong seems long on superficial general examples but rather short on specific suggestions on how this can help educate special education students or the benefits they can accrue from taking this approach. In his article, he does not cite a single example of a student who has benefited from this approach or how they were benefited.
Dr. Armstrong, unlike Ari Ne'eman, seems to acknowledge that those with a neurodiversity perspective do not seem to think of autism as a disability he writes:
The concept is neurodiversity. The term, which was coined by
Australian autism-activist Judy Singer and American journalist Harvey
Blume in the late 1990s, suggests that what we've called in the past
"disabilities" ought to be described instead as "differences" or
"diversities." Proponents of neurodiversity encourage us to apply the
same attitudes that we have about biodiversity and cultural diversity to
an understanding of how different brains are wired.
I must commend Dr. Armstrong for his honesty in telling us what neurodiversity really means, rather than the usual strawman arguments I hear that because I don't like neurodiversity that I'm opposed to human rights for disabled or "differently abled" persons.
I tweeted back to Silberman that I doubted that he or Dr. Armstrong had ever spent a day of their lives as special ed students, as opposed to the eight years of my life which I was in private special ed schools in the pre IDEA days. Though I realize Dr. Armstrong at one time was a special ed teacher (rather than a journalist like Silberman), I still question how much he really knows about the perspective of the special ed students.
I'm still waiting for Dr. Armstrong to give a specific example of a person who was helped by his approach. He failed to do so in his book. I wrote a pretty extensive comment on his book not long after it was published that I linked to above and the interested reader can check that out. I was disappointed that Dr. Armstrong still fails to do so in this article.
Again, I take umbrage to Armstrong's comparison of peta lillys or people from Holland not living at a high altitude and comparing this with the struggles that those of us with disabilities have to go through every day.
He unfortunately mentions Ari Ne'eman in his article. Though Ne'eman was not as honest as he was when he denied that he had ever stated that autism was a disability and then tried to cover up his belief when I provided documentation to the contrary on this blog.
I also wonder about Silberman's point of view as he told me when I first wrote to him about his planned book that he did not plan to trivialize the devastation that autism causes to some. This would seem evidence to the contrary.
I guess I'll just have to be patient until Silberman publishes his book, so I can give my take on autism's gadfly, which I'm still anticipating.
Addendum: Silberman has now blocked me on twitter, just for politely disagreeing with him and judging his and Dr. Armstrong's ability to assess the needs of special education students because they themselves were never special ed students. Someone else on twitter called my account there a "troll account". Yet more examples of how much neurodiversity loves to dish it out, but can't even take the most polite criticism.
Friday, February 15, 2013
Wednesday, February 13, 2013
I'm contemplating self-publishing my novel
Off and on over the past three or four years, I've been writing (and rewriting) a novel about an autistic poker player. It has a beginning and a middle or an end, so technically I could say it's finished and ready to be self-published. But I'm not sure. This is my second more or less completed novel. My first novel dealt with the autobiographically inspired adventures of a young autistic boy in a special education school and his mother's attempts to garner him the best help and services based on having to go through the rigmarole of getting the best stuff possible included in his IEP and having to go through the ins and outs of the Individuals with Disabilities Education Act. I've flogged that first novel and given up on having it published or self-published, but more on that later.
Now that I'm contemplating self-publishing the second novel, I've been looking over the Amazon-owned website, create space, which helps in self-publication for supposedly affordable amounts of money. It was hard for me to understand the ins and outs of their webpage. They charge $65.00 just for helping you format and upload the novel to Kindle Direct Publishing. I was rather stunned when I was told you could just log onto Amazon's self-publishing website and do it yourself for free. A friend from the internet writer's workshop I've participated in said he'd help me do it. I also bought a new kindle recently and have purchased a few ebooks to get used to the idea of maybe having an ebook of my own and the concept in general. Until recently hard copy books worked well for me and I saw no need to purchase a kindle. Changing with the times seemed necessary. I've now downloaded the instructions on how to do it on my kindle, so I might be able to do it myself. If not, hopefully my internet pen pal can assist me and I won't have to cough up $65.
Cover art is most likely another necessity in the endeavor. I think create space charges about $365 for that. I have a friend (or friendly acquaintance) who's a professional author and illustrator of children's books. I asked her if she could do it for about two hundred bucks. She said she normally charges $10,000 for cover art, but because I was a friend she'd do it for $200. Then, she apparently was going through a rough patch in her life or was busy with over more lucrative projects, she couldn't do it. It looks like I've found someone else who's a talented artist, and with luck, she'll do it for me for $200. So, if I can get those two items taken care of, perhaps I'll have a self-published novel that anyone who cares to spend a few bucks can download onto their kindle.
Then there's the problem with mass marketing and promotion which costs a pretty penny. Create Space seems to provide assistance in this area also, but hardly at a cost which I can afford. Interestingly, I've now been able to get airtime on NPR twice and another NPR show was interested in doing a show on yours truly, but that fell through. More on that later. The first of the two shows dealt with my first novel. There are a lot of published novelists who would love to get on an NPR show and can't, so perhaps I have a good media gimmick to help sell books. But is that really enough or is there more to the story?
To date, like just about everything else in my life, my writing career (for want of a better word) has not been propitious. I realize I've written about this on other blog posts, but I see nothing wrong with a recap. I first attempted to write a novel at age 14. Writing a novel would seem to be quite an undertaking for even a typical 14 year old. However, I was autistic and at the time had had essentially no mainstream education, having attended special schools my entire life. At 14, I was mainstreamed in eighth grade (one level below my chronologically-aged peers) and I began writing this novel. My lack of concentration, urge to twiddle (self-stimulate) and inability to be organized prevented me from finishing this project. A few other scattered attempts at novel writing in my teens produced the same result. At 19, I started college and was very busy with that and didn't write for many years. However, the pipe dreams of glory never stopped and I often fantasized about being a commercially successful novelist.
In the 1990s, a few years after I first became Eric Courchesne's research subject I decided a nonfiction piece might be easier to write than a whole book, fiction or nonfiction. In those days, his findings of a smaller cerebellar vermis in some persons with autism was getting some media traction. I wrote a nonfiction article about my being a research subject for him which was rejected by a number of magazines. My most avid fans know that I've self published this article on my stories web page. I never dreamed that nearly two decades later it would result in an interview that would be broadcast on NPR.
It was not enough, I also wanted to write fiction. At this time, I became friends with a schizophrenic individual who was a prolific writer of short stories. He suggested that instead of a novel, I try my hand at a short story or two as that might be easier than a novel since you don't have to put in the sustained effort that a much longer work would entail. It turned out he was right and I was able to write 16 short stories, most of them inspired by my experiences and angst as an autistic individual.
I submitted them to magazines and the inevitable rejections kept pouring in. However, I got some encouragement. Glimmer Train stories, a very prestigious short story magazine wrote on my rejection slip for one story, 'quite a moving piece, enjoyed it'.
I still yearned to write a novel and finally in about the year 2000 began "The School of Hard Knocks" which I wrote about above. I took a private writing class and met another member of the class, Tamar Brott, a freelance journalist who had done stories for the NPR shows This American Life and Studio 360. She took an interest in my work. The statement that piqued her the most was my wanting to use my autism as a gimmick in order to get the novel published and a best seller and find a girlfriend. She pitched the idea to Ira Glass and the rest of the This American Life crew and they loved it and were interested in having a story about me broadcast on their NPR show. I hoped that this would result in publication of my novel. At the 11th hour This American Life decided not to run the story because they felt that Tamar had given too much of a negative perspective on it.
I started submitting the novel to literary agents. The fourth agent whom I queried with said she was interested in reading the first 100 pages and did not want me to submit to anyone else until she had read them. She wrote me a note saying that although she was interested in the character's story and personally interested in my background as an individual with autism that after having read the sample pages she did not believe she could find a publisher for me, but suggested I might consider hiring a professional writer to help polish it.
I took the suggestion and a couple of individuals stated that there was so much wrong with the novel that I would have to write it over from scratch. At this point I had been rejected by eight agents and gave up.
After the fiasco with This American Life, Tamar pitched the idea of my novel to the show Studio 360, a smaller NPR show, but a national show dealing with the arts and one who a number of prestigious and published authors have appeared on. I can't help wondering if I'm the only person in history who had one book doctor tell me it was a waste of time to edit my novel and then a month after that read from my novel on a national radio show and was unable to get it published. Even the title was a ghastly cliche and I couldn't think of a better one (I still can't). I submitted it to two more agents and my rejections totaled ten.
Discouraged, I turned my efforts to nonfiction and wrote a short book about my take on various things concerning autism. It was sort of a rough effort and I did not bother submitting the book anyplace. I did, however, self-publish one of the book's ten chapters on my website, an essay questioning the posthumous autism diagnoses of Albert Einstein, Thomas Jefferson and Bill Gates.
I tried writing another novel but was not able to get very far into it. Then the idea of a novel about an autistic poker player came to me. I tried writing this novel off and on, but it took a few years to finish even a first draft. It clearly needed work and I took some writing courses, had one book doctor look over part of it and became a member of the internet writer's workshop for guidance. I got some good help there, but it probably still isn't ready for prime time. I' m not sure I care. I think it's a good story and I want it to be heard so I may take a chance and self publish it. Will this be a mistake? I don't know. Am I committing literary suicide by writing this blog post? I don't know. Will I only sell a few copies on Amazon and look forward to some one star reviews? Another question mark. Will I be able to get the cover art done and either figure out or get help in self publishing it successfully? Even that is a mystery.
All I can say are a couple of other cliches Stay tuned. To be continued.......
Now that I'm contemplating self-publishing the second novel, I've been looking over the Amazon-owned website, create space, which helps in self-publication for supposedly affordable amounts of money. It was hard for me to understand the ins and outs of their webpage. They charge $65.00 just for helping you format and upload the novel to Kindle Direct Publishing. I was rather stunned when I was told you could just log onto Amazon's self-publishing website and do it yourself for free. A friend from the internet writer's workshop I've participated in said he'd help me do it. I also bought a new kindle recently and have purchased a few ebooks to get used to the idea of maybe having an ebook of my own and the concept in general. Until recently hard copy books worked well for me and I saw no need to purchase a kindle. Changing with the times seemed necessary. I've now downloaded the instructions on how to do it on my kindle, so I might be able to do it myself. If not, hopefully my internet pen pal can assist me and I won't have to cough up $65.
Cover art is most likely another necessity in the endeavor. I think create space charges about $365 for that. I have a friend (or friendly acquaintance) who's a professional author and illustrator of children's books. I asked her if she could do it for about two hundred bucks. She said she normally charges $10,000 for cover art, but because I was a friend she'd do it for $200. Then, she apparently was going through a rough patch in her life or was busy with over more lucrative projects, she couldn't do it. It looks like I've found someone else who's a talented artist, and with luck, she'll do it for me for $200. So, if I can get those two items taken care of, perhaps I'll have a self-published novel that anyone who cares to spend a few bucks can download onto their kindle.
Then there's the problem with mass marketing and promotion which costs a pretty penny. Create Space seems to provide assistance in this area also, but hardly at a cost which I can afford. Interestingly, I've now been able to get airtime on NPR twice and another NPR show was interested in doing a show on yours truly, but that fell through. More on that later. The first of the two shows dealt with my first novel. There are a lot of published novelists who would love to get on an NPR show and can't, so perhaps I have a good media gimmick to help sell books. But is that really enough or is there more to the story?
To date, like just about everything else in my life, my writing career (for want of a better word) has not been propitious. I realize I've written about this on other blog posts, but I see nothing wrong with a recap. I first attempted to write a novel at age 14. Writing a novel would seem to be quite an undertaking for even a typical 14 year old. However, I was autistic and at the time had had essentially no mainstream education, having attended special schools my entire life. At 14, I was mainstreamed in eighth grade (one level below my chronologically-aged peers) and I began writing this novel. My lack of concentration, urge to twiddle (self-stimulate) and inability to be organized prevented me from finishing this project. A few other scattered attempts at novel writing in my teens produced the same result. At 19, I started college and was very busy with that and didn't write for many years. However, the pipe dreams of glory never stopped and I often fantasized about being a commercially successful novelist.
In the 1990s, a few years after I first became Eric Courchesne's research subject I decided a nonfiction piece might be easier to write than a whole book, fiction or nonfiction. In those days, his findings of a smaller cerebellar vermis in some persons with autism was getting some media traction. I wrote a nonfiction article about my being a research subject for him which was rejected by a number of magazines. My most avid fans know that I've self published this article on my stories web page. I never dreamed that nearly two decades later it would result in an interview that would be broadcast on NPR.
It was not enough, I also wanted to write fiction. At this time, I became friends with a schizophrenic individual who was a prolific writer of short stories. He suggested that instead of a novel, I try my hand at a short story or two as that might be easier than a novel since you don't have to put in the sustained effort that a much longer work would entail. It turned out he was right and I was able to write 16 short stories, most of them inspired by my experiences and angst as an autistic individual.
I submitted them to magazines and the inevitable rejections kept pouring in. However, I got some encouragement. Glimmer Train stories, a very prestigious short story magazine wrote on my rejection slip for one story, 'quite a moving piece, enjoyed it'.
I still yearned to write a novel and finally in about the year 2000 began "The School of Hard Knocks" which I wrote about above. I took a private writing class and met another member of the class, Tamar Brott, a freelance journalist who had done stories for the NPR shows This American Life and Studio 360. She took an interest in my work. The statement that piqued her the most was my wanting to use my autism as a gimmick in order to get the novel published and a best seller and find a girlfriend. She pitched the idea to Ira Glass and the rest of the This American Life crew and they loved it and were interested in having a story about me broadcast on their NPR show. I hoped that this would result in publication of my novel. At the 11th hour This American Life decided not to run the story because they felt that Tamar had given too much of a negative perspective on it.
I started submitting the novel to literary agents. The fourth agent whom I queried with said she was interested in reading the first 100 pages and did not want me to submit to anyone else until she had read them. She wrote me a note saying that although she was interested in the character's story and personally interested in my background as an individual with autism that after having read the sample pages she did not believe she could find a publisher for me, but suggested I might consider hiring a professional writer to help polish it.
I took the suggestion and a couple of individuals stated that there was so much wrong with the novel that I would have to write it over from scratch. At this point I had been rejected by eight agents and gave up.
After the fiasco with This American Life, Tamar pitched the idea of my novel to the show Studio 360, a smaller NPR show, but a national show dealing with the arts and one who a number of prestigious and published authors have appeared on. I can't help wondering if I'm the only person in history who had one book doctor tell me it was a waste of time to edit my novel and then a month after that read from my novel on a national radio show and was unable to get it published. Even the title was a ghastly cliche and I couldn't think of a better one (I still can't). I submitted it to two more agents and my rejections totaled ten.
Discouraged, I turned my efforts to nonfiction and wrote a short book about my take on various things concerning autism. It was sort of a rough effort and I did not bother submitting the book anyplace. I did, however, self-publish one of the book's ten chapters on my website, an essay questioning the posthumous autism diagnoses of Albert Einstein, Thomas Jefferson and Bill Gates.
I tried writing another novel but was not able to get very far into it. Then the idea of a novel about an autistic poker player came to me. I tried writing this novel off and on, but it took a few years to finish even a first draft. It clearly needed work and I took some writing courses, had one book doctor look over part of it and became a member of the internet writer's workshop for guidance. I got some good help there, but it probably still isn't ready for prime time. I' m not sure I care. I think it's a good story and I want it to be heard so I may take a chance and self publish it. Will this be a mistake? I don't know. Am I committing literary suicide by writing this blog post? I don't know. Will I only sell a few copies on Amazon and look forward to some one star reviews? Another question mark. Will I be able to get the cover art done and either figure out or get help in self publishing it successfully? Even that is a mystery.
All I can say are a couple of other cliches Stay tuned. To be continued.......
Monday, February 4, 2013
Gadfly on NPR!
My interview with NPR science reporter Jon Hamilton aired today after a six month wait. The list of media exposure and mentions continues to grow for me and that's gratifying. Apparently, for some strange reason, it didn't air on KCRW, the local NPR station in Los Angeles. At least as of 8:55, so I just gave up and listened to it online. It did air in some other parts of the country and I've already received a few emails about it and comments on my facebook page. I discussed my decision to will my brain to Autism Speaks autism tissue program and my desire for my brain to be used to elucidate on the etiology of autism and perhaps even help find a cure.
Of course, I'm hoping I have at least another twenty-three years of life (to age eighty or older) and I'm not sure how useful the postmortem brain of someone with advanced age would be. As Hamilton said in the piece, researchers are more interested in obtaining postmortem brains of very young children (perhaps aged 3 or less) because the brain continues to develop up until adulthood. Therefore, the key to understanding the neurophysiology of autism spectrum disorders is to find out what happened at the earliest stage of life possible, since the evidence (at least from what I understand) indicates that autism is a prenatal condition and whatever happens, i.e. abnormal migration of neurons, etc., happens in utero, so the best postmortem brains come from the youngest children possible. These samples are in short supply as obviously there is a dearth of brains from deceased 3 year olds with autism. There are young autistic children who die in accidental drownings or get run over in traffic accidents because they are too impaired to understand danger, and I guess young autistic brains are obtained in this fashion, as unfortunate as these events are. (No, I'm not saying I'm happy about small autistic children dying so we can have more postmortem brain tissue). I realize my friend, Jake Crosby (and others who believe that vaccines cause autism) will dispute this. For that reason, even if I were to drop dead the day after tomorrow at the age of fifty-seven, my brain might not be terribly useful in contributing to any sort of scientific understanding.
One issue that the piece did not mention was my disillusionment with autism speaks and my having second thoughts about my decision to donate my brain to them. It was several years ago that I met a representative from autism speaks' tissue program at an autism conference and filled out the paperwork for donating my brain. Since then Autism Speaks has done a variety of things that I don't like. I've written about these issues elsewhere in case anyone is interested.
I may just go ahead and donate my brain to Autism speaks tissue program in spite of these things. Of course, I'm not sure what I've done with the paperwork as I recently moved and my problems have made me rather disorganized.
I also wonder if there is an amount of time that an autistic brain can be removed from the head and put in formalin or a freezer for it to be useful in research. My sister, Melanie, will most likely outlive me and I guess I'll have to discuss with her the mechanics of getting my brain to the scientists. She lives in Oregon, about a thousand miles away from me so the logistics of getting my brain someplace where it could be useful for scientific research may not be feasible. I guess I may discuss this with Melanie the next time I see her.
In the meantime, I hope that someday science will advance to the point where we'll have something that will help or even cure autistic people of their disability.
Of course, I'm hoping I have at least another twenty-three years of life (to age eighty or older) and I'm not sure how useful the postmortem brain of someone with advanced age would be. As Hamilton said in the piece, researchers are more interested in obtaining postmortem brains of very young children (perhaps aged 3 or less) because the brain continues to develop up until adulthood. Therefore, the key to understanding the neurophysiology of autism spectrum disorders is to find out what happened at the earliest stage of life possible, since the evidence (at least from what I understand) indicates that autism is a prenatal condition and whatever happens, i.e. abnormal migration of neurons, etc., happens in utero, so the best postmortem brains come from the youngest children possible. These samples are in short supply as obviously there is a dearth of brains from deceased 3 year olds with autism. There are young autistic children who die in accidental drownings or get run over in traffic accidents because they are too impaired to understand danger, and I guess young autistic brains are obtained in this fashion, as unfortunate as these events are. (No, I'm not saying I'm happy about small autistic children dying so we can have more postmortem brain tissue). I realize my friend, Jake Crosby (and others who believe that vaccines cause autism) will dispute this. For that reason, even if I were to drop dead the day after tomorrow at the age of fifty-seven, my brain might not be terribly useful in contributing to any sort of scientific understanding.
One issue that the piece did not mention was my disillusionment with autism speaks and my having second thoughts about my decision to donate my brain to them. It was several years ago that I met a representative from autism speaks' tissue program at an autism conference and filled out the paperwork for donating my brain. Since then Autism Speaks has done a variety of things that I don't like. I've written about these issues elsewhere in case anyone is interested.
I may just go ahead and donate my brain to Autism speaks tissue program in spite of these things. Of course, I'm not sure what I've done with the paperwork as I recently moved and my problems have made me rather disorganized.
I also wonder if there is an amount of time that an autistic brain can be removed from the head and put in formalin or a freezer for it to be useful in research. My sister, Melanie, will most likely outlive me and I guess I'll have to discuss with her the mechanics of getting my brain to the scientists. She lives in Oregon, about a thousand miles away from me so the logistics of getting my brain someplace where it could be useful for scientific research may not be feasible. I guess I may discuss this with Melanie the next time I see her.
In the meantime, I hope that someday science will advance to the point where we'll have something that will help or even cure autistic people of their disability.
Wednesday, January 30, 2013
Potential powder keg: Will Alex Plank and Wrong Planet be connected to another shooting spree?
I've just read a post that concerns me a great deal on that well-known neurodiversity website Wrong Planet. Apparently someone who is quite unhappy and possibly psychotic has posted a rather angry rant it reads:
No idea if anyone reads this, but then, this about me venting, in the first place.
Damn lying bigot NTs. I hate you. I hate you all.
You're destroying everything of value. Betray. Treason. Lies. Explointing. Your world. Not mine.
No more false compromises. No more. Never. Not with me. I detest you.
Betraying the very core values of humanity. Yeah, that's what you're good at. Lying. Lying all the time.
Honesty? Honor? Loyality? Caring for your next fellow human beeing?
No, always looking for your own advantage, exploiting others.
Great society.
Give me one, just ONE reason why I shall not take my gun and kill as many of you scum as I can. And yes, I have a gun, beautiful 9mm Para. And enough ammo.
f**k you, NTs.
The world would be a better place w/o you.
To anyone reading this, the implications are rather scary, particularly in light of the recent stories suggesting the strong possibility that Adam Lanza had Asperger's syndrome and actually did go out and shoot people. I wonder what wrong planet CEO Alex Plank's reaction will be. Will he delete this post and ban this person from wrong Planet? Will he report this to the authorities as well as the poster's IP address, so possible preventive action can be taken, regardless of whether or not this is an idle threat and the person really does not have a weapon and whether or not he will make good on his threat to kill people? As regular readers of this blog know, Plank has banned me from posting on his website just because I had the handle "ND Just say no" and posted ideas that did not jive with Plank's anti-cure, ND philosophy.
If this guy is on the level, this would not be the first time Plank and Wrong Planet have been involved in this kind of thing In 2006 Alex Plank and Wrong Planet were sued when Wrong Planet member and poster, William Freund broke into an innocent family's home and shot and killed two people. Freund after the shootings committed suicide. Shortly before the murders Freund had posted on the Wrong Planet website that he was lonely and needed a real friend and that he was contemplating suicide. He also said that he planned to hurt those who had hurt them.
At first, Plank refused to comment on the shootings and Wrong Planet's involvement. Later, he alleged that he had tried to contact Freund's parents and tell them about the post but he was unsuccessful.
Tonight's post is eeriely similar to this and is frightening to me.
In case Plank gets wind of this and deletes the post and anyone ends up thinking I'm just making this up as a vendetta against the ND movement (who I will concede I loathe, including Plank), I've made a screen shot. If I can figure out how to post it on this blog post I will. I'm also going to contact the FBI or any other appropriate law enforcement agency about this. I hope that Plank and other WP administrators will do so as well. Particularly in light of the Freund incident.
Unfortunately, Plank does not have a track record of good judgment, I'm remembering the Zachary Lassiter incident where an individual was claiming that autism speaks pressured an online store to remove his t-shirt that he was selling which was unflattering to AS. Plank, a foe of autism speaks and a cure for autism put this story on the front page of his website. This was later proven by yours truly to be a bunch of baloney. Unfortunately, in spite of this, autism speaks, has chosen to fund Alex Plank's autism talk TV. Also, they handled the William Freund case particularly badly. You can see a thread on Wrong Planet if you google William Freund where in October of 2005, Plank questions who Freund is. I don't know if Alex's friends really tried to contact Freund's parents or not, but it would have been good judgment to report Freund to the FBI or some other authorities and it's possible two lives would have been saved (maybe three including Freund's). I figured out how to post a screenshot and here it is below:
Alex, if you happen to read this, I hope we can put our differences aside and you'll do the right thing and not only ban this person from commenting but report him to the appropriate authorities. If you don't, I certainly will.
Addendum: As can be seen above, i've uploaded the screenshot in question in case wrong planet denies this post ever existed. I've contacted the FBI and reported this. I've been told they will send this to the appropriate field office and agent. Finally, I've emailed Alex Plank at his wrong planet email address advising him of this and suggesting he take appropriate action against this individual, Cephalod and I've cc'd a copy of the email to John Robison just in case.
No idea if anyone reads this, but then, this about me venting, in the first place.
Damn lying bigot NTs. I hate you. I hate you all.
You're destroying everything of value. Betray. Treason. Lies. Explointing. Your world. Not mine.
No more false compromises. No more. Never. Not with me. I detest you.
Betraying the very core values of humanity. Yeah, that's what you're good at. Lying. Lying all the time.
Honesty? Honor? Loyality? Caring for your next fellow human beeing?
No, always looking for your own advantage, exploiting others.
Great society.
Give me one, just ONE reason why I shall not take my gun and kill as many of you scum as I can. And yes, I have a gun, beautiful 9mm Para. And enough ammo.
f**k you, NTs.
The world would be a better place w/o you.
To anyone reading this, the implications are rather scary, particularly in light of the recent stories suggesting the strong possibility that Adam Lanza had Asperger's syndrome and actually did go out and shoot people. I wonder what wrong planet CEO Alex Plank's reaction will be. Will he delete this post and ban this person from wrong Planet? Will he report this to the authorities as well as the poster's IP address, so possible preventive action can be taken, regardless of whether or not this is an idle threat and the person really does not have a weapon and whether or not he will make good on his threat to kill people? As regular readers of this blog know, Plank has banned me from posting on his website just because I had the handle "ND Just say no" and posted ideas that did not jive with Plank's anti-cure, ND philosophy.
If this guy is on the level, this would not be the first time Plank and Wrong Planet have been involved in this kind of thing In 2006 Alex Plank and Wrong Planet were sued when Wrong Planet member and poster, William Freund broke into an innocent family's home and shot and killed two people. Freund after the shootings committed suicide. Shortly before the murders Freund had posted on the Wrong Planet website that he was lonely and needed a real friend and that he was contemplating suicide. He also said that he planned to hurt those who had hurt them.
At first, Plank refused to comment on the shootings and Wrong Planet's involvement. Later, he alleged that he had tried to contact Freund's parents and tell them about the post but he was unsuccessful.
Tonight's post is eeriely similar to this and is frightening to me.
In case Plank gets wind of this and deletes the post and anyone ends up thinking I'm just making this up as a vendetta against the ND movement (who I will concede I loathe, including Plank), I've made a screen shot. If I can figure out how to post it on this blog post I will. I'm also going to contact the FBI or any other appropriate law enforcement agency about this. I hope that Plank and other WP administrators will do so as well. Particularly in light of the Freund incident.
Unfortunately, Plank does not have a track record of good judgment, I'm remembering the Zachary Lassiter incident where an individual was claiming that autism speaks pressured an online store to remove his t-shirt that he was selling which was unflattering to AS. Plank, a foe of autism speaks and a cure for autism put this story on the front page of his website. This was later proven by yours truly to be a bunch of baloney. Unfortunately, in spite of this, autism speaks, has chosen to fund Alex Plank's autism talk TV. Also, they handled the William Freund case particularly badly. You can see a thread on Wrong Planet if you google William Freund where in October of 2005, Plank questions who Freund is. I don't know if Alex's friends really tried to contact Freund's parents or not, but it would have been good judgment to report Freund to the FBI or some other authorities and it's possible two lives would have been saved (maybe three including Freund's). I figured out how to post a screenshot and here it is below:
Addendum: As can be seen above, i've uploaded the screenshot in question in case wrong planet denies this post ever existed. I've contacted the FBI and reported this. I've been told they will send this to the appropriate field office and agent. Finally, I've emailed Alex Plank at his wrong planet email address advising him of this and suggesting he take appropriate action against this individual, Cephalod and I've cc'd a copy of the email to John Robison just in case.
Friday, January 25, 2013
ASAN's strange take on the Fein study
I see that the autistic self advocacy Network is at it again, lambasting Deborah Fein and company's recent study documenting "optimal outcomes" for persons on the autism spectrum.
They use the word "recovery" in the title of their piece as well as emphasizing that word in regard to the recent study which has received a plethora of media attention in recent weeks.
This would seem akin to a "spin job" as the Fein study only mentions recovery once in the study. Rather than emphasize recovery, they mention optimal outcomes, though claim the oo subjects no longer have symptoms on the autistic spectrum as determined by interviews as well as a variety of diagnostic tests.
ASAN's article purports that the oo subjects in Fein's study suffer from depression and other issues, using the research of others to base their argument. ASAN researcher Stephen Kapp cites research obtained by a K. Doheny retrieved from web M.D., but neglects to cite a journal article. A search of Google scholar fails to find such research done by this individual. If anyone can come up with a more specific reference, of course, Gadfly will stand corrected. Fein et. al., in a typical scientific hedge, merely don't discount the possibility that there may be residual symptoms in the optimal outcome group, but stated that further study was necessary to elucidate on this.
ASAN also implies that these optimal outcome subjects felt suicidal yet neglects to present any evidence. They have also stated that these people are still autistic but just have the ability to pass for "normal" persons. This effort to pass they claim, leads to stress, anxiety, depression and even the possibility of suicide, yet they only provide speculation and no concrete evidence to back up these assertions.
Most troubling of all (at least to yours truly) is their statement:
Autistic people do not “recover” and the idea of “recovery” has been profoundly damaging to the Autistic community, encouraging service providers to emphasize normalcy above other more meaningful goals. Furthermore, by teaching Autistic children and adults that “recovery” – pretending to be something we are not – is the “optimal outcome” they can achieve, we send a profoundly damaging message to Autistic people, our families, and the public at large. Autism is a natural part of the human condition and not something to recover from or eliminate. The goal of autism research and service provision should be to create happy Autistic people, not to encourage ‘passing for non-Autistic’ without regard to the impact on our quality of life.
I believe some people with ASD do recover, a lucky few 100%, others partially. I myself belong in the latter category. In the late 1950s I was a profoundly autistic toddler, unable to speak, tantruming, smearing feces, etc. I did partially recover, including getting my speech back, graduating college and being able to work sporadically. However, as regular readers of my blog know, my recovery, unfortunately, was only partial. I have profound social problems, motor coordination problems, anxieties and after multiple firings from jobs had to retire in my early 50s.
No, I don't believe autism is a natural part of the human condition. It is a disease that if at all possible should be completely recovered from and completely eliminated, so no other child has to suffer as I did and still continue to do so. ASAN in their statements believes that persons such as myself should be crippled and sick, that we should not have a chance at a decent life and we should continue to be handicapped no matter how much spin they would promote to have us believe their position is otherwise.
Again, they show an astounding ignorance of the Americans with Disabilities Act, what the law states in terms of how ASD's should be accommodated in the workplace and elsewhere.
Their statements are quite unfortunate and I am deeply offended by their statements that I and others like me don't deserve a cure, don't deserve to be recovered and be able to live normal and happy lives without autism.
They use the word "recovery" in the title of their piece as well as emphasizing that word in regard to the recent study which has received a plethora of media attention in recent weeks.
This would seem akin to a "spin job" as the Fein study only mentions recovery once in the study. Rather than emphasize recovery, they mention optimal outcomes, though claim the oo subjects no longer have symptoms on the autistic spectrum as determined by interviews as well as a variety of diagnostic tests.
ASAN's article purports that the oo subjects in Fein's study suffer from depression and other issues, using the research of others to base their argument. ASAN researcher Stephen Kapp cites research obtained by a K. Doheny retrieved from web M.D., but neglects to cite a journal article. A search of Google scholar fails to find such research done by this individual. If anyone can come up with a more specific reference, of course, Gadfly will stand corrected. Fein et. al., in a typical scientific hedge, merely don't discount the possibility that there may be residual symptoms in the optimal outcome group, but stated that further study was necessary to elucidate on this.
ASAN also implies that these optimal outcome subjects felt suicidal yet neglects to present any evidence. They have also stated that these people are still autistic but just have the ability to pass for "normal" persons. This effort to pass they claim, leads to stress, anxiety, depression and even the possibility of suicide, yet they only provide speculation and no concrete evidence to back up these assertions.
Most troubling of all (at least to yours truly) is their statement:
Autistic people do not “recover” and the idea of “recovery” has been profoundly damaging to the Autistic community, encouraging service providers to emphasize normalcy above other more meaningful goals. Furthermore, by teaching Autistic children and adults that “recovery” – pretending to be something we are not – is the “optimal outcome” they can achieve, we send a profoundly damaging message to Autistic people, our families, and the public at large. Autism is a natural part of the human condition and not something to recover from or eliminate. The goal of autism research and service provision should be to create happy Autistic people, not to encourage ‘passing for non-Autistic’ without regard to the impact on our quality of life.
I believe some people with ASD do recover, a lucky few 100%, others partially. I myself belong in the latter category. In the late 1950s I was a profoundly autistic toddler, unable to speak, tantruming, smearing feces, etc. I did partially recover, including getting my speech back, graduating college and being able to work sporadically. However, as regular readers of my blog know, my recovery, unfortunately, was only partial. I have profound social problems, motor coordination problems, anxieties and after multiple firings from jobs had to retire in my early 50s.
No, I don't believe autism is a natural part of the human condition. It is a disease that if at all possible should be completely recovered from and completely eliminated, so no other child has to suffer as I did and still continue to do so. ASAN in their statements believes that persons such as myself should be crippled and sick, that we should not have a chance at a decent life and we should continue to be handicapped no matter how much spin they would promote to have us believe their position is otherwise.
Again, they show an astounding ignorance of the Americans with Disabilities Act, what the law states in terms of how ASD's should be accommodated in the workplace and elsewhere.
Their statements are quite unfortunate and I am deeply offended by their statements that I and others like me don't deserve a cure, don't deserve to be recovered and be able to live normal and happy lives without autism.
Wednesday, January 23, 2013
Why does Shannon Des Roches Rosa stick up for the neurodiversity movement?
I've just read an interesting article in that ironically named blog, The thinking person's guide to autism, that seems to stick up for the neurodiversity movement, which claims to be about human rights, but also states that autism is not a disordered way of being but a different way of being and whose numerous proponents have even stated on occasion that autism is not a disability.
Her article is in response to a piece written by Amy Lutz, questioning how well facilitated communication works as well as how much the neurodiversity movement truly represents autistic people. Most of Lutz's article is nothing new for those denizens of autism blogs who know well the arguments against neurodiversity and the story of Amanda Bagg's questionable if not improbable status as a true member of the autism spectrum. Ergo, the details of the article are not worth repeating here, though the interested reader can read the article I've linked to.
Ms. Rosa questions the reasons that Lutz would attack the ND movement. Conversely, I'd like to ponder the question of why the author defends the neurodiversity movement. Accordingly, I'd like to come up with what I think may be a plausible explanation for her behavior.
Des Roches Rosa claims that Lutz was attacking disabled people for appearing less disabled than her offspring. This did not seem to be the case. Though she did not dispute that Amanda Baggs may be disabled, she points out Baggs unusual clinical history for an autism diagnosis and the questionable claim she was diagnosed with autism at age 14. This is certainly a legitimate talking point as Baggs, at least in the past, was a poster child for the ND movement. Also, she gives Ari Ne'eman as an example of one of these disabled persons. This is in spite of the fact that in the past i've documented that Ne'man has stated that he himself is not disabled. So I'm not sure who the author is referring to as disabled.
Most interesting of all, she states that neurodiversity is not only the province of very high functioning (or not even disabled) autistics/Asperger's individuals, but for parents of relatively low functioning children as well. She gives herself and Kristina Chew as examples.
Though I don't know a whole lot about Ms. Rosa, I am quite familiar with Ms. Chew, as I've read numerous blog entries of hers and have seen her on Good Morning America. This is a woman who has stated she opposes curing her son's autism, yet has placed him in ABA programs with the apparent goal of "normalizing" him. She has advocated for the IDEA law and has advocated for services on his behalf and seems to have a misunderstanding of the law's intent and the supreme court's decision in the Rowley case and insists her son receive the "best" services, though he is not legally entitled to these. She has also made the strangely inconsistent statement to me that she is satisfied with her son's functioning level. Not only does one wonder about an explanation for Rosa's defense of ND in general, but Ms. Chew's behavior in particular.
As a former consumer of psychoanalysis for more than ten years in my childhood, I believe I have the answer to these intriguing questions---Freudian defense mechanisms. These include reaction formation, denial, projection, etc. though I've written about this topic in the past, I believe a recap is in order.
The first of these defense mechanisms is denial. Diane Sawyer in the Good Morning America show that Ms. Chew was on aptly described neurodiversity as a beautiful way of justifying heartbreak. Chew and I suppose Des Roches Rosa are possibly in denial of having children who are impaired. They can't cope with the hurt and the pain so they use this as a psychological defense mechanism. This is to deny that there is anything wrong with their children. This goes with saying that autism is not a defect that needs to be cured, but that progress can be made and the child with the correct accommodations can function as well as a normal kid. This is a denial of reality but perhaps it makes these mothers feel better about their offspring. Others are displacement and projection, thus getting angry at anyone who wishes a cure for their child or who has something like the ransom notes thing that clinic in New York had. Most intriguing of all is reaction formation, taking something you hate and and claiming to love it. Instead of hating autism, they use this defense mechanism to celebrate it, to claim that Gates and Einstein were autistic and that autism is a great thing and not a bad thing and it can be worked with.
Perhaps these defense mechanisms are why Chew makes the outlandish statements that she does and why Des Roches Rosa would stick up for a convoluted movement like neurodiversity.
Her article is in response to a piece written by Amy Lutz, questioning how well facilitated communication works as well as how much the neurodiversity movement truly represents autistic people. Most of Lutz's article is nothing new for those denizens of autism blogs who know well the arguments against neurodiversity and the story of Amanda Bagg's questionable if not improbable status as a true member of the autism spectrum. Ergo, the details of the article are not worth repeating here, though the interested reader can read the article I've linked to.
Ms. Rosa questions the reasons that Lutz would attack the ND movement. Conversely, I'd like to ponder the question of why the author defends the neurodiversity movement. Accordingly, I'd like to come up with what I think may be a plausible explanation for her behavior.
Des Roches Rosa claims that Lutz was attacking disabled people for appearing less disabled than her offspring. This did not seem to be the case. Though she did not dispute that Amanda Baggs may be disabled, she points out Baggs unusual clinical history for an autism diagnosis and the questionable claim she was diagnosed with autism at age 14. This is certainly a legitimate talking point as Baggs, at least in the past, was a poster child for the ND movement. Also, she gives Ari Ne'eman as an example of one of these disabled persons. This is in spite of the fact that in the past i've documented that Ne'man has stated that he himself is not disabled. So I'm not sure who the author is referring to as disabled.
Most interesting of all, she states that neurodiversity is not only the province of very high functioning (or not even disabled) autistics/Asperger's individuals, but for parents of relatively low functioning children as well. She gives herself and Kristina Chew as examples.
Though I don't know a whole lot about Ms. Rosa, I am quite familiar with Ms. Chew, as I've read numerous blog entries of hers and have seen her on Good Morning America. This is a woman who has stated she opposes curing her son's autism, yet has placed him in ABA programs with the apparent goal of "normalizing" him. She has advocated for the IDEA law and has advocated for services on his behalf and seems to have a misunderstanding of the law's intent and the supreme court's decision in the Rowley case and insists her son receive the "best" services, though he is not legally entitled to these. She has also made the strangely inconsistent statement to me that she is satisfied with her son's functioning level. Not only does one wonder about an explanation for Rosa's defense of ND in general, but Ms. Chew's behavior in particular.
As a former consumer of psychoanalysis for more than ten years in my childhood, I believe I have the answer to these intriguing questions---Freudian defense mechanisms. These include reaction formation, denial, projection, etc. though I've written about this topic in the past, I believe a recap is in order.
The first of these defense mechanisms is denial. Diane Sawyer in the Good Morning America show that Ms. Chew was on aptly described neurodiversity as a beautiful way of justifying heartbreak. Chew and I suppose Des Roches Rosa are possibly in denial of having children who are impaired. They can't cope with the hurt and the pain so they use this as a psychological defense mechanism. This is to deny that there is anything wrong with their children. This goes with saying that autism is not a defect that needs to be cured, but that progress can be made and the child with the correct accommodations can function as well as a normal kid. This is a denial of reality but perhaps it makes these mothers feel better about their offspring. Others are displacement and projection, thus getting angry at anyone who wishes a cure for their child or who has something like the ransom notes thing that clinic in New York had. Most intriguing of all is reaction formation, taking something you hate and and claiming to love it. Instead of hating autism, they use this defense mechanism to celebrate it, to claim that Gates and Einstein were autistic and that autism is a great thing and not a bad thing and it can be worked with.
Perhaps these defense mechanisms are why Chew makes the outlandish statements that she does and why Des Roches Rosa would stick up for a convoluted movement like neurodiversity.
Sunday, January 20, 2013
cool new blog by Dr. Manuel Casanova
I'm happy to report that the neuroscientist Dr. Manuel Casanova, who's done research involving minicolumns in the post mortem brains of autistic persons has has recently started a new blog called cortical chauvinism, which should be some interesting stuff about neuroscience, particularly the neuroscience of autism. The good doctor's first entry deals with the problems of extrapolating mice models of autism to humans, since the brains of the two species are so different. Dr. Casanova has found that a unit of the brain called minicolumns-a vertical structure that contains 80 to 100 neurons working together- are more numerous in the postmortem autistic brains that he studied and also have less neurons in them and are narrower than in typical control brains. He also found the insulation of the autistic minicolumns was not as well developed as in typical brains. He has used the analogy of a broken shower curtain which means that certain neurotransmitters such as GABA can get through, abnormally exciting the neurons. Interestingly, he found these in the prefrontal cortex, an area that Eric Courchesne found to be abnormally enlarged and have an abnormal number of neurons in some autistic brains. Also these are part of the mirror neuron system that Dr. Marco Iacoboni has described. He and other researchers have found abnormalities of these type of neurons in the autistic brains on functional MRIs.
Courchesne seemed to think that one of the problems of Casanova's research was that all of the postmortem brains were those of adults rather than small children. Since the autistic brain undergoes developmental changes throughout the lifetime, this could limit the minicolumn findings. Of course, there are a dearth of toddlers brains available for postmortem autopsy.
I asked Dr.Iacoboni if mirror neurons could exist on minicolumns, i.e. whether or not you could have a minicolumn with 60 to 80 mirror neurons on it. He replied that we didn't know but probably not.
So apparently, there are a lot more questions than answers.
Though some of the science on this new blog post and future posts that Dr. Casanova may write may be a bit out of my depth, I still find this a really intriguing new blog and I hope Dr. Casanova continues to write posts.
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