Those who have been following the news know there's been some controversy about certain government officials in the Trump administration who have abused their power by using government aircraft at taxpayer expense when they could have purchased much cheaper flights on commercial airlines. HHS secretary Tom Price is apparently one of the worst if not the worst offender in this regard, piling up a government tab of around 400 grand. After a barrage of media publicity, secretary price claimed he would not be using the private jets anymore.
According to an article in the Los Angeles Times, president Trump himself expressed displeasure at the antics of his HHS secretary and has not ruled out firing him.
After Price's appointment by Trump and his confirmation by the Senate, I emailed Mr. Price urging him not to allow members of the neurodiversity movement such as John Robison, Samantha Crane, and Noah Britton to serve on the IACC. I also urged him not to seat an IACC if the executive branch of the federal government could legally do so. Though congress passed the CARES act which includes having to have an IACC, I'm not sure if that means the president and secretary of health and human services are legally obligated to appoint members.
Not surprisingly, Mr. Price did not respond to my email and, if what I've been reading about him in the news is true, he's apparently less than an ethical person.
If Trump fires Price and appoints a new HHS secretary, then I guess I'm going to have to start all over again and write him/her, urging them to do something about the ND's. Not just the fact that some of them serve on the IACC, but also those in any position of power such as Scott Robertson's appointment to some other thing outside the IACC and John Robison's and Steve Shore's appointment to review grant applications.
As I've said before on multiple occasions, several anti-cure, anti-treatment individuals have been appointed to the IACC and other government affiliated programs. Not a single pro-treatment, pro-cure autistic has been appointed to any of these. This is despite the fact that Roger Kulp and possibly some other individuals on the spectrum who are in favor of cure/treatment might actually have some constructive ideas about autism-related matters. Roger tried to get on the IACC but was turned down.
Though John Robison has claimed he's pro-treatment and is in favor of remediating the disabling aspects of autism, he still says he's opposed to a cure, which, in my opinion, is like saying people should learn how to swim, but they shouldn't get wet.
It will be interesting to see if Trump appoints a new HHS secretary and if he does, that individual will be hearing from Autism's Gadfly (me). So far, secretary Price, NIMH head Joshua Gordon, and President Trump himself have not taken a position against neurodiversity and have not done anything about these people and their influence in government-related autism matters. If Price gets canned and Trump appoints someone else, I hope they'll do something about neurodiversity.
Thursday, September 28, 2017
Tuesday, September 26, 2017
Life didn't imitate "the good doctor's" art in one case.
There's been lots of hoopla over the new TV show, "The Good Doctor" which uses the cliched trope of autistics as supermen. Apparently, in the good doctor's case, M.D. should stand for Magical Deity. Though I watched all eight episodes of "Atypical" I decided to take a pass on "The Good Doctor" as I find the premise of autistics as supermen offensive, was bored and unable to follow the plotline in "The Accountant", and felt the premise of the show was also not compelling. Therefore, I suppose I can't completely comment on the show without having seen it, so I'll end my comments about the actual show here.
But one of the interesting questions that has come up due to the publicity the show has received is whether or not an autistic could actually be a competent physician in real life.
In John Elder Robison's book, Switched On, he states that one of the other Asperger's research subjects of the Harvard TMS group is an orthopedic surgeon.
Neurodiversity activist Sara Luterman, writing for NOS magazine, claims there are lots of autistic physicians and medical students. I did not check out her link, so I can't really comment on how valid this claim is.
In a Scientific American Blog an author who I think may be savantism expert Darold Treffert (but I'm not sure) stated that it's plausible that an autistic savant could be a gifted surgeon.
But it's an interesting question. Even if an autistic is so mildly on the spectrum or can overcome his/her disabilities to such an extent they could get an astronomical GPA in college, get into medical school, have the ability to work with patients during their third and fourth year of medical school, would they be able to perform the functions of a physician effectively?
The reason that it's such an interesting question is that there is one known case of this I've written about previously where the answer appears to be no This is the case of a physician alleging to have Asperger's syndrome named Martin Jakubowski who began a primary care physician residency in a hospital in Ohio. Though he scored high on his medical knowledge examination, he scored poorly on the emotional intelligence exam. Supervisors noted his weak interpersonal skills and began to question his ability as a physician. He had difficulty with instructions to patients, interacting with other physicians and speaking on the phone when doing his job. Because of all these problems, the autistic physician was fired.
He attempted to appeal his firing, claiming that his disability should be accommodated because of the Americans with Disabilities Act. Jakubowski lost his case in Federal court because the court agreed with the hospital that Jakubowski's impairment prevented him from being able to perform the job with or without reasonable accommodations. The "good doctor's" request for the accommodation of "understanding and awareness" was not deemed reasonable. He also asked that a doctor be assigned to him to monitor his activities. The court agreed the hospital had the legal position this was not a reasonable accommodation as it would cost the hospital too much money and time to do this.
Keeping patients safe is certainly a requisite, so it is certainly reasonable not to allow an autistic physician to continue in their residency if their disability prevents them from being effective in their job.
Very few people who have watched and commented on "the good doctor" will ever be aware of who Martin Jakubowski is and the irony that life didn't imitate art in at least one instance.
But one of the interesting questions that has come up due to the publicity the show has received is whether or not an autistic could actually be a competent physician in real life.
In John Elder Robison's book, Switched On, he states that one of the other Asperger's research subjects of the Harvard TMS group is an orthopedic surgeon.
Neurodiversity activist Sara Luterman, writing for NOS magazine, claims there are lots of autistic physicians and medical students. I did not check out her link, so I can't really comment on how valid this claim is.
In a Scientific American Blog an author who I think may be savantism expert Darold Treffert (but I'm not sure) stated that it's plausible that an autistic savant could be a gifted surgeon.
But it's an interesting question. Even if an autistic is so mildly on the spectrum or can overcome his/her disabilities to such an extent they could get an astronomical GPA in college, get into medical school, have the ability to work with patients during their third and fourth year of medical school, would they be able to perform the functions of a physician effectively?
The reason that it's such an interesting question is that there is one known case of this I've written about previously where the answer appears to be no This is the case of a physician alleging to have Asperger's syndrome named Martin Jakubowski who began a primary care physician residency in a hospital in Ohio. Though he scored high on his medical knowledge examination, he scored poorly on the emotional intelligence exam. Supervisors noted his weak interpersonal skills and began to question his ability as a physician. He had difficulty with instructions to patients, interacting with other physicians and speaking on the phone when doing his job. Because of all these problems, the autistic physician was fired.
He attempted to appeal his firing, claiming that his disability should be accommodated because of the Americans with Disabilities Act. Jakubowski lost his case in Federal court because the court agreed with the hospital that Jakubowski's impairment prevented him from being able to perform the job with or without reasonable accommodations. The "good doctor's" request for the accommodation of "understanding and awareness" was not deemed reasonable. He also asked that a doctor be assigned to him to monitor his activities. The court agreed the hospital had the legal position this was not a reasonable accommodation as it would cost the hospital too much money and time to do this.
Keeping patients safe is certainly a requisite, so it is certainly reasonable not to allow an autistic physician to continue in their residency if their disability prevents them from being effective in their job.
Very few people who have watched and commented on "the good doctor" will ever be aware of who Martin Jakubowski is and the irony that life didn't imitate art in at least one instance.
Saturday, August 12, 2017
Atypical: A typical Hollywood presentation of autism
Right before atypical came out on netflix, I thought I’d watch it and write a blog post about it. A hot commodity in the autism blogosphere and cyberspace, I knew it was bound to generate some controversy. Those who have read my blog for the past nine years know I seem to thrive on controversy, or at least jump into the forefront of it, either intentionally or unintentionally. However, I got sidetracked by the shock of watching the first few moments of the opening first scene of the first episode, noting Sam the protagonist doing a behavior called “twiddling” a form of self-stimulation similar to the identically named activity I do that I’ve written about from time to time. His therapist next asked him if he wanted to donate his brain of science, mirroring the NPR show “morning edition” which I appeared on, discussing my donating my own brain to science, in which I discussed my twiddling in words close to identical to what Sam said. It seems improbable that this is a coincidence, but I suppose there’s a middling to fair chance Robia Rashid listened to my NPR interview while doing research for her show.
Now that I’m over my initial shock, I’ve decided to do what I’d originally planned to do and give my $.02 worth take. I suspected that the irascible ND’s would take umbrage to this show, and I was not disappointed. This show is bound to generate some controversy in the next few days.
There are some things to like about the show. As I wrote in my previous post, celibacy is a problem for many autistic people that gets very little play in the media or in literature and other entertainment mediums. I’m glad that the show takes up this theme, but there’s a downside, but more about that later. Amy Okuda, Jennifer Jason Leigh, and Brigette Lundy-Paine are attractive actresses who add some eye candy. (At my age, 55-year-old Jason Leigh is attractive, though possibly not to younger viewers). The show has a certain intensity and conflicts between the various characters that adds some intrigue. Also, each episode has an old Sidney Sheldon style “cliffhanger” ending that may compel at least some viewers to watch more. The end of the eighth and final season episode is particularly intriguing in this regard, but I won’t spoil it for anyone. It appears Rashid planned to make more episodes and hook her viewers further. Lundy-Paine’s character is fleshed out and provides some intrigue to the show. The episodes do show some (though not much) of the angst of living with autism.
However, the pros stop there and are inundated by the plethora of cons. I was prepared to possibly refute some of the hostile remarks about the show the ND hatemongers would inevitably make. However, I found myself nodding in agreement with their take on Sam Gardner as a sort of cardboard one-dimensional character who represents a conglomerate of autistic symptoms, rather than a believable autistic person. He wears headphones to eliminate sensory noise, despite being mildly autistic enough to work part-time, go to a mainstream school and get A’s. This is much more common in lower-functioning kids such as Judith Ursitti’s son than in someone with mild autism. It shows him on a job not having any problems with co-workers or job performance, particularly intriguing when he’s working in a store and it involves customer interaction. He also has a ‘typical’ friend who is Pakistani and probably an alter-ego of Rashid herself. He develops a crush on his therapist, a 26-year-old clinical psychologist. Someone that young already having a ph.d., finishing their internship, and being an adjunct professor seems over-the-top.
The protagonist’s mother appears to be intentionally presented as one of the most unlikable characters you could imagine. She is overprotective of her son, invades her children’s privacy and commits adultery and then blames her boyfriend for having an affair with a married woman. Why the show’s creators would not want to make the mother a sympathetic character seems baffling. Other episodes seem way over the top, including his nearly hooking up with a girl he scares off initially, being insensitive to other girls and people and then being easily forgiven. One of the most over-the-top things was a sensory dance where the entire school accommodates the protagonist by having a silent dance without a band where the students can listen to music on optional head phones while they dance.
While the show is billed as the protagonist having women problems, there seems to be a bait and switch tactic where he is actually successful with at least one girl who seems to have some behavioral quirks which might place her on the spectrum, but this is not mentioned explicitly.
There is no one telling him he should find an autistic girlfriend which happens to us so typically. Perhaps I should excuse Robia Rashid’s ignorance about the problems that celibacy presents for many autistic males, but it seems a writer should be more aware of a subject they choose to tackle.
In essence, there is not much compelling about “atypical” and as is typical (ironic use of the word) as it presents a very warped and optimistic view of autism that does not ring true or jibe with real life, seemingly par for the course of Hollywood depictions.
I was not sure I would watch all eight episodes but I ended up doing so, compelled mostly by the controversy and apparent borrowing from my life in the first scene. This show seems to be getting so much press and traction, I suspect it may be one of Netflix’s golden eggs and there will probably be more episodes but I don’t think I will be watching them and I don’t recommend to my readers that they do so either.
Now that I’m over my initial shock, I’ve decided to do what I’d originally planned to do and give my $.02 worth take. I suspected that the irascible ND’s would take umbrage to this show, and I was not disappointed. This show is bound to generate some controversy in the next few days.
There are some things to like about the show. As I wrote in my previous post, celibacy is a problem for many autistic people that gets very little play in the media or in literature and other entertainment mediums. I’m glad that the show takes up this theme, but there’s a downside, but more about that later. Amy Okuda, Jennifer Jason Leigh, and Brigette Lundy-Paine are attractive actresses who add some eye candy. (At my age, 55-year-old Jason Leigh is attractive, though possibly not to younger viewers). The show has a certain intensity and conflicts between the various characters that adds some intrigue. Also, each episode has an old Sidney Sheldon style “cliffhanger” ending that may compel at least some viewers to watch more. The end of the eighth and final season episode is particularly intriguing in this regard, but I won’t spoil it for anyone. It appears Rashid planned to make more episodes and hook her viewers further. Lundy-Paine’s character is fleshed out and provides some intrigue to the show. The episodes do show some (though not much) of the angst of living with autism.
However, the pros stop there and are inundated by the plethora of cons. I was prepared to possibly refute some of the hostile remarks about the show the ND hatemongers would inevitably make. However, I found myself nodding in agreement with their take on Sam Gardner as a sort of cardboard one-dimensional character who represents a conglomerate of autistic symptoms, rather than a believable autistic person. He wears headphones to eliminate sensory noise, despite being mildly autistic enough to work part-time, go to a mainstream school and get A’s. This is much more common in lower-functioning kids such as Judith Ursitti’s son than in someone with mild autism. It shows him on a job not having any problems with co-workers or job performance, particularly intriguing when he’s working in a store and it involves customer interaction. He also has a ‘typical’ friend who is Pakistani and probably an alter-ego of Rashid herself. He develops a crush on his therapist, a 26-year-old clinical psychologist. Someone that young already having a ph.d., finishing their internship, and being an adjunct professor seems over-the-top.
The protagonist’s mother appears to be intentionally presented as one of the most unlikable characters you could imagine. She is overprotective of her son, invades her children’s privacy and commits adultery and then blames her boyfriend for having an affair with a married woman. Why the show’s creators would not want to make the mother a sympathetic character seems baffling. Other episodes seem way over the top, including his nearly hooking up with a girl he scares off initially, being insensitive to other girls and people and then being easily forgiven. One of the most over-the-top things was a sensory dance where the entire school accommodates the protagonist by having a silent dance without a band where the students can listen to music on optional head phones while they dance.
While the show is billed as the protagonist having women problems, there seems to be a bait and switch tactic where he is actually successful with at least one girl who seems to have some behavioral quirks which might place her on the spectrum, but this is not mentioned explicitly.
There is no one telling him he should find an autistic girlfriend which happens to us so typically. Perhaps I should excuse Robia Rashid’s ignorance about the problems that celibacy presents for many autistic males, but it seems a writer should be more aware of a subject they choose to tackle.
In essence, there is not much compelling about “atypical” and as is typical (ironic use of the word) as it presents a very warped and optimistic view of autism that does not ring true or jibe with real life, seemingly par for the course of Hollywood depictions.
I was not sure I would watch all eight episodes but I ended up doing so, compelled mostly by the controversy and apparent borrowing from my life in the first scene. This show seems to be getting so much press and traction, I suspect it may be one of Netflix’s golden eggs and there will probably be more episodes but I don’t think I will be watching them and I don’t recommend to my readers that they do so either.
Friday, August 11, 2017
Did Netflix Show "Atypical" borrow from my life?
Netflix and the media have been hyping the newly streamed series "Atypical" for several weeks now. This show just started airing today on netflix and has already been mired in some controversy and it's highly probable that it will generate more. The show has a number of pros and cons which may be beyond the scope of this particular post though I may write about them in a subsequent post.
The underlying and unprecedented theme of the show is an 18-year-old boy on the autism spectrum who is a senior in high school who has trouble in relationships but wants to find a girlfriend but has trouble doing so. Celibacy is a major and mostly unpublicized problem for many males (and possibly females as well) on the spectrum. This is an issue scarcely mentioned in the media. Much of the exposure of males on the spectrum goes to John Elder Robison, Ari Ne'eman, and Michael John Carley and Steve Shore who combined have seven marriages between them. This was a compelling enough hook to entice me to watch at least some of the show. (at this point, I've watched the first four of eight episodes and I may or may not watch more of them).
I was incredibly piqued when I watched the opening of the first episode where Sam, the autistic protagonist, is doing a self-stimulatory behavior he calls "twiddling" where he holds a pencil in his left hand and flexes a rubber band in his left and right hands and describes doing this at a certain frequency. The camera next pans to his therapist, an attractive Asian woman. She asks him if he's interested in donating his brain to science.
I've called the self-stimulatory behavior that I do twiddling where I shake some shoelaces while holding a pencil in my left hand while I engage in Walter Mitty (for those who remember the old Thurber short-story and/or possible movie with Danny Kaye) type fantasies for about fifty-five years now, going back to about 1961 or 1962
About four and a half years ago, I was also on an NPR show which talked about a shortage in autism brain tissue and how I donated my brain (regretfully to autism speaks) to science. I also mentioned my twiddling and described it in that interview.
Bruno Bettelheim in his 1967 book The Empty Fortress also used the term "twiddling" to describe certain self-stims (i don't think the term stim had been invented yet), but he did not use the word "frequency" or describe any of his charges at the orthogenic school using a pencil (though it's been many years since I've read the book so my memory may be a bit sketchy). Though I used the word "twiddling" as a small child before Bettelheim's book was published, I realize it's unlikely he got the term from yours truly. It would seem highly improbable that the creators or writers of "Atypical" have ever read The Empty Fortress.
I'm wondering if it's a coincidence or if they borrowed from my life. I guess I will never know for certain but it does not seem that probable it is a coincidence though I suppose it is not impossible.
A number of persons, particularly ND's,including Ari Ne'eman, have complained about allistic (non-autistic) persons writing storylines about autism. But somehow I don't think they're going to go out of their way to help publicize "The Mu Rhythm Bluff" or any of the short stories I have on my website, inspired by my experiences as an autistic person.
Before Netflix released the show, I was contemplating watching it and writing some reviews of it. I may do this in a future blog post, but I'm not sure. However, I'll look forward to the ensuing controversy that I'm sure this show will generate in the autism blogosphere and cyberspace.
However, no one will probably care or note that they may have taken some stuff from my life as one of the composites of the autistic protagonist.
The underlying and unprecedented theme of the show is an 18-year-old boy on the autism spectrum who is a senior in high school who has trouble in relationships but wants to find a girlfriend but has trouble doing so. Celibacy is a major and mostly unpublicized problem for many males (and possibly females as well) on the spectrum. This is an issue scarcely mentioned in the media. Much of the exposure of males on the spectrum goes to John Elder Robison, Ari Ne'eman, and Michael John Carley and Steve Shore who combined have seven marriages between them. This was a compelling enough hook to entice me to watch at least some of the show. (at this point, I've watched the first four of eight episodes and I may or may not watch more of them).
I was incredibly piqued when I watched the opening of the first episode where Sam, the autistic protagonist, is doing a self-stimulatory behavior he calls "twiddling" where he holds a pencil in his left hand and flexes a rubber band in his left and right hands and describes doing this at a certain frequency. The camera next pans to his therapist, an attractive Asian woman. She asks him if he's interested in donating his brain to science.
I've called the self-stimulatory behavior that I do twiddling where I shake some shoelaces while holding a pencil in my left hand while I engage in Walter Mitty (for those who remember the old Thurber short-story and/or possible movie with Danny Kaye) type fantasies for about fifty-five years now, going back to about 1961 or 1962
About four and a half years ago, I was also on an NPR show which talked about a shortage in autism brain tissue and how I donated my brain (regretfully to autism speaks) to science. I also mentioned my twiddling and described it in that interview.
Bruno Bettelheim in his 1967 book The Empty Fortress also used the term "twiddling" to describe certain self-stims (i don't think the term stim had been invented yet), but he did not use the word "frequency" or describe any of his charges at the orthogenic school using a pencil (though it's been many years since I've read the book so my memory may be a bit sketchy). Though I used the word "twiddling" as a small child before Bettelheim's book was published, I realize it's unlikely he got the term from yours truly. It would seem highly improbable that the creators or writers of "Atypical" have ever read The Empty Fortress.
I'm wondering if it's a coincidence or if they borrowed from my life. I guess I will never know for certain but it does not seem that probable it is a coincidence though I suppose it is not impossible.
A number of persons, particularly ND's,including Ari Ne'eman, have complained about allistic (non-autistic) persons writing storylines about autism. But somehow I don't think they're going to go out of their way to help publicize "The Mu Rhythm Bluff" or any of the short stories I have on my website, inspired by my experiences as an autistic person.
Before Netflix released the show, I was contemplating watching it and writing some reviews of it. I may do this in a future blog post, but I'm not sure. However, I'll look forward to the ensuing controversy that I'm sure this show will generate in the autism blogosphere and cyberspace.
However, no one will probably care or note that they may have taken some stuff from my life as one of the composites of the autistic protagonist.
Sunday, July 2, 2017
Will "autistics are awesome employees" affect eligibility for disability?
The autistic advantage in employment. Neurodiversity is an asset in the workplace. In recent months, headlines like these have been rampant in major media outlets such as the New York Times, The Atlantic Monthly, Time Magazine, The wall street journal and other places. I've discussed before the problems with these headlines and whether they're valid. I've argued that they were not true to my own experience and it quite possibly is not true to most other autistic's experiences. I've also questioned if these media stories are helpful to autistics. One of the major points to ponder is if autistics have all these superior skills and are good with computers, software testing, programming, cybersecurity, etc., then why are there quoted rates of autistic unemployment at 85% or higher?
There may be some people who would argue that articles and statements such as these are helpful in that an autistic could be employed if society were less prejudiced and this could educate employers to be more accepting and understanding and provide the accommodations the individual would need to perform the job. Another school of thought is that a lot of autistics don't interview well due to aloofness, strange mannerisms, or an inability to look people in the eye. There are supposedly plenty of qualified autistic employees who could do the job but might make a bad impression on an interview. The interview should be structured to accommodate the person or not even have an interview with questions or personality tests that have no relevance in assessing the person's ability to perform their work duties.
These are the reasons why, according to this line of thought, we need to have articles such as these and that they could help, but that they are not hurting at all. Even if they don't result in the autistic applicant being hired or not being fired if they already have a job, then these articles are harmless and nothing bad will result from them. But is this really the case?
One area in which they might harm an individual is if they have so much trouble keeping a job they need to apply for disability; either SSI or SSDI or both. Though Simon Baron-Cohen in his 2000 essay stating that autism in its higher functioning forms should not be considered a disability, he did write that autistics should still be considered legally disabled so they could get SSI or SSDI or whatever the British equivalent is if they need it.
Disability has been increasingly harder to get as the federal budget and deficit grows more sharply and the programs have less than sufficient funds as the baby boomers such as myself begin to retire and start receiving their social security payments. I've already written about my unsuccessful four and a half year fight to get on disability shortly after I retired ten years ago. From what I read, about two-thirds of people who try to obtain disability are turned down in their first attempt to get SSI or SSDI. In order to have any hope of obtaining disability, there's a lengthy appeal process that can take many years. Others I've known have been turned down for disability as well. One person I know won their fight but it took them eight years of due process. After my lawyer would not take my case to district court, I found out he'd had another autistic client whom he went to bat for in the lower federal court and lost the case. I know of two others who recently won their cases.
The problem is exacerbated by society's and the U.S. government's attitude that people who apply for disability are lazy, are malingerers, not trying their best and are moochers. For SSI (but not for SSDI) there is a means test in which you are not allowed more than $2,000 in assets. If you have $2001 in your checking account, you're rich and are stealing from the taxpayers.
What better ammo and excuse is there for the federal government to deny people disability than these articles and the repeated statements that autistics make great employees and are an asset to the workplace? These people should have no trouble at all getting a job and keeping it since industry is crying for people like these. Therefore, any autistic person who does not work and needs money to survive (or more money then they might have from other sources) is just a lazy son of a bitch who's just an unethical slacker and not trying their best.
The autistics have superior visual skills, pattern recognition, attention to details which make them assets to the workforce is an illusion. However autistic unemployment and the difficulties of obtaining disability are not. Therefore I believe these articles and statements are not only unhelpful, but they have the potential to be very hurtful to the people they are meant to help if they need to apply for disability. (aside from giving struggling media enterprises a good story that will make them some bucks).
There may be some people who would argue that articles and statements such as these are helpful in that an autistic could be employed if society were less prejudiced and this could educate employers to be more accepting and understanding and provide the accommodations the individual would need to perform the job. Another school of thought is that a lot of autistics don't interview well due to aloofness, strange mannerisms, or an inability to look people in the eye. There are supposedly plenty of qualified autistic employees who could do the job but might make a bad impression on an interview. The interview should be structured to accommodate the person or not even have an interview with questions or personality tests that have no relevance in assessing the person's ability to perform their work duties.
These are the reasons why, according to this line of thought, we need to have articles such as these and that they could help, but that they are not hurting at all. Even if they don't result in the autistic applicant being hired or not being fired if they already have a job, then these articles are harmless and nothing bad will result from them. But is this really the case?
One area in which they might harm an individual is if they have so much trouble keeping a job they need to apply for disability; either SSI or SSDI or both. Though Simon Baron-Cohen in his 2000 essay stating that autism in its higher functioning forms should not be considered a disability, he did write that autistics should still be considered legally disabled so they could get SSI or SSDI or whatever the British equivalent is if they need it.
Disability has been increasingly harder to get as the federal budget and deficit grows more sharply and the programs have less than sufficient funds as the baby boomers such as myself begin to retire and start receiving their social security payments. I've already written about my unsuccessful four and a half year fight to get on disability shortly after I retired ten years ago. From what I read, about two-thirds of people who try to obtain disability are turned down in their first attempt to get SSI or SSDI. In order to have any hope of obtaining disability, there's a lengthy appeal process that can take many years. Others I've known have been turned down for disability as well. One person I know won their fight but it took them eight years of due process. After my lawyer would not take my case to district court, I found out he'd had another autistic client whom he went to bat for in the lower federal court and lost the case. I know of two others who recently won their cases.
The problem is exacerbated by society's and the U.S. government's attitude that people who apply for disability are lazy, are malingerers, not trying their best and are moochers. For SSI (but not for SSDI) there is a means test in which you are not allowed more than $2,000 in assets. If you have $2001 in your checking account, you're rich and are stealing from the taxpayers.
What better ammo and excuse is there for the federal government to deny people disability than these articles and the repeated statements that autistics make great employees and are an asset to the workplace? These people should have no trouble at all getting a job and keeping it since industry is crying for people like these. Therefore, any autistic person who does not work and needs money to survive (or more money then they might have from other sources) is just a lazy son of a bitch who's just an unethical slacker and not trying their best.
The autistics have superior visual skills, pattern recognition, attention to details which make them assets to the workforce is an illusion. However autistic unemployment and the difficulties of obtaining disability are not. Therefore I believe these articles and statements are not only unhelpful, but they have the potential to be very hurtful to the people they are meant to help if they need to apply for disability. (aside from giving struggling media enterprises a good story that will make them some bucks).
Saturday, June 24, 2017
Finished rough draft of book on neurodiversity, now what?
In the some good news and bad news department, I've decided to write another Gadfly blog post.
First, I'll get the good news out of the way, I've tentatively finished a rough draft of a non-fiction book about the neurodiversity movement. I've written about all the problems with the movement that I see. It's about 303 double spaced pages in version 12 of wordperfect. I've never been fond of Word and still use wordperfect as my wordprocessing software. It is just under 88,000 words. The working title is Neurotripes: The Other Side of the Neurodiversity Story. Thanks and a tip of the gadfly hat to Jill Escher for giving me the idea of using the word Neurotripes in the title as a parody of Mr. Silberman's tome. I've included the history of neurodiversity and my personal involvement in it; comments on the scientific and legal basis of neurodiversity; the basis for autistics superior skills and what the research really means; the hostile cure debate; the murder card; a recycled albeit improved version of my essay about undiagnosing certain celebrities; the hostile cure debate; the actual neurotripes of Mr. Steve Silberman and other issues. A few of you have already read some of these things on my blog, so if the book is ever published all the info won't be novel to you. I've spent nearly two years off and on writing this rough draft.
Now that I've gotten the good news out of the way I can summarize the bad news in two words; now what?
Well this is a good summary, but I can't really explain all the problems in two words, ergo this blog post. Before I do this I just want to comment that though this book may be worthless and unpublishable at this point, some people don't even understand how hard it is to write a book; even an unpolished first draft of one. Two autistics I know (one from the internet and one I know in real life) told me they wanted to write books and asked me how they could put it on Amazon as I'd done with The Mu Rhythm Bluff. I explained to them since neither of them had written even a word of their planned books, that they should write a book first and then think about this.
But the question remains "now what?" I posted it on Facebook and got some captain obvious responses. Submit it to an agent and write a query letter and I could learn how to do so online. One person who included me in their book said I could email him the manuscript and he would have his publisher read it.
There are a couple of things wrong with this. Sending the 'script to agents and publishes if it is not ready for prime time will only result in rejections without a second chance for redemption. After pointing this out someone suggested get people to read the book before sending it out.
There are not many people I know who would read the book for free and give me valuable editing and feedback. One possible option is the internet writer's workshop, some of whose members critiqued the mu rhythm bluff while I was working on it. However, you have to critique other members things and the process takes about a year. I have only participated in their novel writing workshop, but I think they have a non-fiction workshop as well. This is very possibly an option I will consider.
Other people hire editors. This is a process that can cost $3,000 or more and is not necessarily helpful. I really don't have the funds for this.
I remember sending out my first novel to agents when it was not of publishable quality. I got a positive response from one agent who was interested in reading the first 100 pages. After reading them, she responded that she did not believe that she'd be able to find me a publisher. I don't want to send it out before it's ready for submission but not sure how I would know this.
Self-publishing at some point might be an option. I did this with The Mu Rhythm Bluff but sold less than 200 copies. I got a few impartial positive reviews on Amazon and that was nice. I was very poor at marketing and promoting it (no easy feat with a self-published work), Also, with self-publication it might not necessarily be ready for prime time. But, if a publisher (particularly a major house) wants to publish it, must mean you've done something right. I never would have guessed Neurotribes was of publishable quality, but I was obviously wrong about that.
Another problem is I did a variety of research on various topics for nearly a two year period and some of the stuff is not that fresh in my mind and I'd have to go back and review a lot of the articles and things I'd read to really know a lot of the subject matter thoroughly. Though it's in separate chapters, there is overlap between a variety of topics and therefore some repetition which would turn a reader off.
One of the problems is when I write a first draft, that is usually how I want to write the book and I am not good or flexible about making needed changes. I guess I want people to tell me that I'm a genius and the next Hemingway or something like that, but I know that won't happen. Ironically enough, Charles Bukowski has been quoted as saying most men are born geniuses but die idiots. Perhaps he was talking about me.
I'm also itching to write more short stories and novels, though maybe not as marketable, might be more fun than trying to outwit the cult of neurodiversity. This project has taken me away from more attempts to write fiction for the past two years.
I'm not sure when I will give up on this project or when I would consider submitting to an agent or publisher, but I get tired of having to wait until a work is finished. That is one thing that motivated me to self-publish the mu rhythm bluff.
My fantasy was to write autism-related novels and use my autism as a gimmick to have them published and be commercially successful. To date I failed at that. With changing definitions including people less severely on the spectrum, autistic people who write books (including fiction) are now practically a dime a dozen. No one cared that I was an autistic capable of writing mediocre and unpublishable novels.
However, due to the fact I'm an autistic person who regards this as a bad disability and wants a cure for my affliction, I have received some media attention, including being on an NPR show and being profiled in Newsweek and Los Angeles Magazine publishing an article I wrote about the cure debate. As well as a few lesser exposures. I've received more notoriety for wanting a cure and treatments for a neurological affliction than I have for writing a few books. I wonder if anyone besides me sees the irony in this.
All that said, I wish I could get back to work and get some results, though it may be just easier to ponder the question of "now what?"
First, I'll get the good news out of the way, I've tentatively finished a rough draft of a non-fiction book about the neurodiversity movement. I've written about all the problems with the movement that I see. It's about 303 double spaced pages in version 12 of wordperfect. I've never been fond of Word and still use wordperfect as my wordprocessing software. It is just under 88,000 words. The working title is Neurotripes: The Other Side of the Neurodiversity Story. Thanks and a tip of the gadfly hat to Jill Escher for giving me the idea of using the word Neurotripes in the title as a parody of Mr. Silberman's tome. I've included the history of neurodiversity and my personal involvement in it; comments on the scientific and legal basis of neurodiversity; the basis for autistics superior skills and what the research really means; the hostile cure debate; the murder card; a recycled albeit improved version of my essay about undiagnosing certain celebrities; the hostile cure debate; the actual neurotripes of Mr. Steve Silberman and other issues. A few of you have already read some of these things on my blog, so if the book is ever published all the info won't be novel to you. I've spent nearly two years off and on writing this rough draft.
Now that I've gotten the good news out of the way I can summarize the bad news in two words; now what?
Well this is a good summary, but I can't really explain all the problems in two words, ergo this blog post. Before I do this I just want to comment that though this book may be worthless and unpublishable at this point, some people don't even understand how hard it is to write a book; even an unpolished first draft of one. Two autistics I know (one from the internet and one I know in real life) told me they wanted to write books and asked me how they could put it on Amazon as I'd done with The Mu Rhythm Bluff. I explained to them since neither of them had written even a word of their planned books, that they should write a book first and then think about this.
But the question remains "now what?" I posted it on Facebook and got some captain obvious responses. Submit it to an agent and write a query letter and I could learn how to do so online. One person who included me in their book said I could email him the manuscript and he would have his publisher read it.
There are a couple of things wrong with this. Sending the 'script to agents and publishes if it is not ready for prime time will only result in rejections without a second chance for redemption. After pointing this out someone suggested get people to read the book before sending it out.
There are not many people I know who would read the book for free and give me valuable editing and feedback. One possible option is the internet writer's workshop, some of whose members critiqued the mu rhythm bluff while I was working on it. However, you have to critique other members things and the process takes about a year. I have only participated in their novel writing workshop, but I think they have a non-fiction workshop as well. This is very possibly an option I will consider.
Other people hire editors. This is a process that can cost $3,000 or more and is not necessarily helpful. I really don't have the funds for this.
I remember sending out my first novel to agents when it was not of publishable quality. I got a positive response from one agent who was interested in reading the first 100 pages. After reading them, she responded that she did not believe that she'd be able to find me a publisher. I don't want to send it out before it's ready for submission but not sure how I would know this.
Self-publishing at some point might be an option. I did this with The Mu Rhythm Bluff but sold less than 200 copies. I got a few impartial positive reviews on Amazon and that was nice. I was very poor at marketing and promoting it (no easy feat with a self-published work), Also, with self-publication it might not necessarily be ready for prime time. But, if a publisher (particularly a major house) wants to publish it, must mean you've done something right. I never would have guessed Neurotribes was of publishable quality, but I was obviously wrong about that.
Another problem is I did a variety of research on various topics for nearly a two year period and some of the stuff is not that fresh in my mind and I'd have to go back and review a lot of the articles and things I'd read to really know a lot of the subject matter thoroughly. Though it's in separate chapters, there is overlap between a variety of topics and therefore some repetition which would turn a reader off.
One of the problems is when I write a first draft, that is usually how I want to write the book and I am not good or flexible about making needed changes. I guess I want people to tell me that I'm a genius and the next Hemingway or something like that, but I know that won't happen. Ironically enough, Charles Bukowski has been quoted as saying most men are born geniuses but die idiots. Perhaps he was talking about me.
I'm also itching to write more short stories and novels, though maybe not as marketable, might be more fun than trying to outwit the cult of neurodiversity. This project has taken me away from more attempts to write fiction for the past two years.
I'm not sure when I will give up on this project or when I would consider submitting to an agent or publisher, but I get tired of having to wait until a work is finished. That is one thing that motivated me to self-publish the mu rhythm bluff.
My fantasy was to write autism-related novels and use my autism as a gimmick to have them published and be commercially successful. To date I failed at that. With changing definitions including people less severely on the spectrum, autistic people who write books (including fiction) are now practically a dime a dozen. No one cared that I was an autistic capable of writing mediocre and unpublishable novels.
However, due to the fact I'm an autistic person who regards this as a bad disability and wants a cure for my affliction, I have received some media attention, including being on an NPR show and being profiled in Newsweek and Los Angeles Magazine publishing an article I wrote about the cure debate. As well as a few lesser exposures. I've received more notoriety for wanting a cure and treatments for a neurological affliction than I have for writing a few books. I wonder if anyone besides me sees the irony in this.
All that said, I wish I could get back to work and get some results, though it may be just easier to ponder the question of "now what?"
Thursday, June 22, 2017
Will Divisions in the Autism Community ever be resolved
Individuals involved in autism, including parents, professionals, and autistic people themselves have a wide range of opinions on a variety of issues. These include persons who believe that vaccines cause autism, though the evidence for this is lacking. This also includes people who believe in the concept of neurodiversity, though the evidence of this concept as a biological fact or effective way of resolving the problems of autism are also lacking. There are also individuals such as myself who don't agree with either camp and have their own strong opinions about autism.
The various sides have been at loggerheads with one another going back to the nineties when the internet had widespread use and diagnoses of autism increased rapidly. There have been nasty insults traded back and forth by all sides. On occasions there have even been death threats such as when one neurodiversity individual threatened to murder as many NTs as he could Likewise researcher Manuel Casanova stated that he'd received death threats from some people who believed vaccines caused autism when he made statements contrary to their beliefs. Temple Grandin's mother, with the exception of her unfortunate statement linking autistics to pedophiles, has stated that she usually stays out of autism debates because of all the political disagreements in the autism world. Bernard Rimland's widow (forgot her name) has made a similar statement.
Lately, there have been some suggestions that these divisions can and should be resolved for the common good of all concerned. This line of thought is that if we all worked together on common goals then we'd actually be able to do things to help persons on the autism spectrum and their families vis-a-vis, insurance, lobbying legislatures, etc. John Elder Robison recently wrote a blog post to that effect. This was partially in response to Amy Lutz who expressed concern that JER did not understand that she needed help in finding a residential placement for her son, when he suggested that if his own dog could make a choice that Lutz's son could too. Ms. Lutz cordially invited John to come to her home and have a dialogue with her son about where he'd want to live, possibly to show to him he might not understand the problems someone with an IQ of 40 might have with that. I realize at some point when John's busy schedule permits him time and he's in the Pennsylvania area he might accept Amy's invite. I hope he does.
Though he has not yet accepted her invitation, he did write a conciliatory response to her concern. This gave her encouragement believing that at some point the autism community could work together for the common good.
In a facebook exchange with Thomas Clements (the autistic buddha) he expressed unhappiness at being attacked by a neurodiversity SJW and asked for my input as well as John Robison's and Steve Silberman and others. My only comment was that he was now learning what neurodiversity was really about. This prompted a response from Silberman stating that my comment was an example of all the infighting among those interested in autism and it prevented those afflicted from receiving the help they needed.
Roger Kulp stated that there were no way all the sides could work together because of the great disparity of the groups in their goals. Also he seemed to blame the psychiatry profession for being too inclusive of too many people to be included under the autism rubric when they wrote later versions of the DSM. Roger makes what I believe are some valid points as there is a huge difference in functioning and clinical profile between lets say Alex Plank and Amy Lutz's son and Jill Escher's children.
I would like to give my take as an individual and go beyond just the entire group.
I don't believe the divisions in the autism community will ever be resolved nor will I make an effort to do so.
I will never work with neurodiversity people who have called me a nazi or at least implied this. I will never work with people who have insulted my mother called her a witch and a yapping shrew and have stated that she's a danger to the autism community. I will never work with people who have implied I might be out to engage in click bait and publicity for my blog after I angrily responded in one thread in another blog when they were ridiculing my celibacy and calling my mother names, I will never work with people who state that persons who want to find treatments and cures for autism are looking for a way to intentionally abort autistic fetuses. When journalist Erika Hayasaki was writing a profile about me that was eventually published in Newsweek magazine, a bunch of NDs wrote her en masse, urging her not to write about me. They probably also wrote Newsweek urging them not to publish the article. I will never work with these people.
There is no way my goals and theirs will ever be reconciled, so I'm not going to try. I don't believe that doing research on whether or not vaccines cause autism will get any results as this has been done ad nauseum. I don't believe acceptance and accommodations are going to resolve all the problems of autism. I don't believe that embracing businesses like specialisterne, SAP, Mindspark, etc. stating that the neurodiversity model will enable autistics to make a living will help.
In a facebook exchange with Amy, when she was enthused with Robison's post and felt that all the factions could work together, I stated I did not agree. She asked me if I felt she was naive. I told her I believed she was. I still believe people who think this way are naive.
I hope that scientific research will be done that helps find treatments and prevention(not abortion) for autism. However, at the present time, there are no easy answers, and I believe it is naive to think so.
Though John Robison may have had good intentions with his post, I don't believe the various factions will ever work together nor should they attempt to.
Lately, there have been some suggestions that these divisions can and should be resolved for the common good of all concerned. This line of thought is that if we all worked together on common goals then we'd actually be able to do things to help persons on the autism spectrum and their families vis-a-vis, insurance, lobbying legislatures, etc. John Elder Robison recently wrote a blog post to that effect. This was partially in response to Amy Lutz who expressed concern that JER did not understand that she needed help in finding a residential placement for her son, when he suggested that if his own dog could make a choice that Lutz's son could too. Ms. Lutz cordially invited John to come to her home and have a dialogue with her son about where he'd want to live, possibly to show to him he might not understand the problems someone with an IQ of 40 might have with that. I realize at some point when John's busy schedule permits him time and he's in the Pennsylvania area he might accept Amy's invite. I hope he does.
Though he has not yet accepted her invitation, he did write a conciliatory response to her concern. This gave her encouragement believing that at some point the autism community could work together for the common good.
In a facebook exchange with Thomas Clements (the autistic buddha) he expressed unhappiness at being attacked by a neurodiversity SJW and asked for my input as well as John Robison's and Steve Silberman and others. My only comment was that he was now learning what neurodiversity was really about. This prompted a response from Silberman stating that my comment was an example of all the infighting among those interested in autism and it prevented those afflicted from receiving the help they needed.
Roger Kulp stated that there were no way all the sides could work together because of the great disparity of the groups in their goals. Also he seemed to blame the psychiatry profession for being too inclusive of too many people to be included under the autism rubric when they wrote later versions of the DSM. Roger makes what I believe are some valid points as there is a huge difference in functioning and clinical profile between lets say Alex Plank and Amy Lutz's son and Jill Escher's children.
I would like to give my take as an individual and go beyond just the entire group.
I don't believe the divisions in the autism community will ever be resolved nor will I make an effort to do so.
I will never work with neurodiversity people who have called me a nazi or at least implied this. I will never work with people who have insulted my mother called her a witch and a yapping shrew and have stated that she's a danger to the autism community. I will never work with people who have implied I might be out to engage in click bait and publicity for my blog after I angrily responded in one thread in another blog when they were ridiculing my celibacy and calling my mother names, I will never work with people who state that persons who want to find treatments and cures for autism are looking for a way to intentionally abort autistic fetuses. When journalist Erika Hayasaki was writing a profile about me that was eventually published in Newsweek magazine, a bunch of NDs wrote her en masse, urging her not to write about me. They probably also wrote Newsweek urging them not to publish the article. I will never work with these people.
There is no way my goals and theirs will ever be reconciled, so I'm not going to try. I don't believe that doing research on whether or not vaccines cause autism will get any results as this has been done ad nauseum. I don't believe acceptance and accommodations are going to resolve all the problems of autism. I don't believe that embracing businesses like specialisterne, SAP, Mindspark, etc. stating that the neurodiversity model will enable autistics to make a living will help.
In a facebook exchange with Amy, when she was enthused with Robison's post and felt that all the factions could work together, I stated I did not agree. She asked me if I felt she was naive. I told her I believed she was. I still believe people who think this way are naive.
I hope that scientific research will be done that helps find treatments and prevention(not abortion) for autism. However, at the present time, there are no easy answers, and I believe it is naive to think so.
Though John Robison may have had good intentions with his post, I don't believe the various factions will ever work together nor should they attempt to.
Subscribe to:
Posts (Atom)
