I just read an interesting post by Kevin Leitch, creator of the autism hub and left brain/right brain blogger. Kevin expresses an interest in facilitated communication and wonders if it is genuine. Kevin, if I remember correctly, has a nonverbal daughter and stated, in what is the usual bizarre logic and lack of common sense among neurodiversity proponents, in a radio interview ,that he did not believe autistics needed a cure. However, if a cure were available, he would give it to his daughter if she herself wished for it. In this interview Kev also repeated his belief that autistics who don't want a cure don't need one as well as the hub's old tagline "we don't want no stinkin' cure".
One wonders how it would be possible for a nonverbal child to communicate the desire for a cure. Perhaps, for this reason, Kevin is interested in using facilitated communication as a possible intervention for his daughter. Kevin expresses skepticism about FC but makes the following interesting statement:
The section of the autism community that accepts FC as a valid technique is largely the neurodiversity movement in who’s(sic) ranks I place myself. But is this making me a hypocrite? I place such firm emphasis on science when it comes to vaccines I can do no less in other areas. But on the other hand voices I trust implicitly within the neurodiversity movement speak out in favour of FC. Amanda Baggs, Kathleen Seidel and (I think) Michelle Dawson to name but three.
Kevin neglects to provide any links or documentation of where these three stellar individuals have endorsed FC.
Perhaps he mentioned Amanda Baggs because Amanda Baggs claims to be a nonverbal autistic in spite of the fact she once spoke very fluently and then started to gradually lose her speech in adolescence and then fully in adulthood, claiming to have suffered from catatonia. There is evidence that Amanda may not be all she claims. Though some people have accused Amanda of being a malingerer in order to receive her SSI checks and section 8 housing, I have yet to see any actual smoking guns. Even if Amanda is all she claims, she certainly does not present the same sort of clinical picture as Dov Shestack or John Belmonte who have never spoken.
Also, he may have mentioned Seidel because she and her husband are good friends of Baggs and may be endorsing the fallacious idea that Baggs is a low functioning autistic.
He also mentions Michelle Dawson but seems less certain about her. It would seem strange if Michelle Dawson had actually endorsed FC, being that she is such a stickler for scientific rigor and constantly complains about the low standards of science and ethics being applied to persons with autism. So far, the scientific evidence has been weighted against FC with most (if not all studies) refuting its existence. If anything one would think that Dawson would be criticizing FC and the unsupported assertions of its proponents who apply these low standards of science to autistics.
Interestingly, one person he does not mention is Ari Ne'eman. Given that Ne'eman is the president of ASAN and one of the things they have lobbied congress for is inclusion of augmentive communication devices as part of autism insurance bills and the autism treatment acceleration act. There can be little doubt that Ne'eman believes in FC.
Kevin also wonders if he should believe in FC given people he respects may believe in FC in spite of all the scientific evidence against it. He states that he does not believe vaccines cause autism because of scientific evidence.
Here we see a possible neurodiversity double standard. They accept science that supports their position but reject science that does not support their position. In the past Kathleen Seidel and others have stated that part of the reason they don't like the thimerosal or vaccine hypothesis is because it is insulting to them that anyone would consider them or their children "toxic". It would seem in part the autism vaccine controversy is more emotional to at least some neurodiversites than scientific.
In this vein, one wonders why at least some members of the ND movement, Ne'eman in particular might endorse FC. Perhaps the reason is, they can then say that rejecting a cure for autism or research in genetics and neurophysiology that might enable autistics to lead a better life is fine. Research that would enable autistics to speak is unnecessary, because FC would give them those same capabilities. It would also enable Ne'eman and his ASAN subordinates to make it look like they are actually doing something constructive to help persons on the spectrum, rather than spewing out hatred, lies and propaganda, such as the despicable no myths video. What did the ransom notes campaign, the campaign against the York Pennsylvania kidnapping sign, the pressure placed on AS to remove the I am autism video from their website do for autistic people, who must struggle every day of their lives? Perhaps ASAN realizes this and wants to make it look like they are doing something. Maybe ND's want to make themselves look compassionate and not reveal their true colors as to the vicious hate mongers that most of them really are.
Perhaps ND's who endorse FC have an ulterior motive.
Addendum: Michelle Dawson has commented on Kevin Leitch's post that she does not in fact support facilitated communication and Kevin Leitch has acknowledged the error and has stood corrected.
Tuesday, October 6, 2009
Monday, October 5, 2009
Michael John Carley: Candidate for AS board of directors?
One of the many complaints that neurodiversity proponents have about their favorite organization, autism speaks, is their apparent belief that AS disenfranchises those with autism in that no members of the board of directors are actually on the spectrum themselves.
For some reason that remains a mystery to your humble blogger it is more important to these people to have someone serve as board of director of an organization to whose goals they have overt hostility than it is for autism speaks to employ someone with autism in their organization. I am not sure what the unemployment rate is among persons with autism, but it is a good guess that it is mighty high. I have previously written about the autism and the workplace promotion (which I won't link to) done by autism speaks in spite of the salient absence of a paid autistic employee in their group.
One of the arguments made for putting a spectrumite on the board of directors of AS is that other autism organizations have persons on the spectrum in position of power. For example one of the board members of ASA is Valerie Paradiz, a Ph.D. in German literature, a former college professor, published author of a memoir and now an autism consultant and lecturer. She makes the claim (which I am skeptical of) that she herself is on the spectrum. I am mystified how this person gives a voice to someone like Dov Shestack or John Belmonte or any other non-speaking person with autism who requires round-the-clock care. Or even for someone on the spectrum relatively high functioning such as myself.
It seems as though persons with autism who believe in an neurodiversity perspective may have cause to celebrate. It would seem that one of their own, Michael John Carley, who like Dr. Paradiz has a published memoir and is an autism lecturer (though not sure if he is a consultant) seems to have quite a friendly relationship with autism speaks. He has had AS president, Mark Roithmayr give his book a shout-out. He and former autism speaks executive, Allison Tepper Singer exchanged some articles of understanding in which they publicly exchanged views.
Given the controversy over the recent "I am autism" video. Carley has weighed in with his perspective. A neurodiversity blogger, Sarah, a cat in a dog's world, has
given her take on Carley's perspective. We see from reading this that though Carley has never met Bob or Suzanne Wright he has met their grandson. So, there seems to be a friendship between Carley and some persons in AS. (though Tepper-Singer is no longer with the organization). Carley has tried to talk up autism speaks. He has disingenuously claimed that they are talking less about a cure. Sarah correctly called him on this.
One place where Carley did hit the nail on the head was his assertion that certain individuals were jealous of the Wright's financial situation. Now this is probably the real reason ND wants an autistic person on the board-particularly an autistic who shares their perspective. They can't acquire the capital for their activities, so by getting on the board of autism speaks, they will be in a better position to acquire it for their own ends.
Carley talks about how the research autism speaks will have some sort of global benefit. This is in spite of the fact that he has spoken for all autistics preaching the familiar "acceptance not cure" mantra on radio interviews. In his book "Asperger's from the Inside out" Carley has claimed that there is a universal feeling among those on the spectrum that they should not be cured. Naturally he neglected to consult either Roger Kulp or myself or any other pro-cure autistic.
Carley who was able to get married, have children, work in a decent paying job and likely never spent a day of his life in a special education school, did not find out he had AS until age 36. Only after his son was diagnosed with an autism spectrum disorder. This is the reason I only read bits and portions of his book and not the entire book. I do not feel he has anything to offer to me about information about the spectrum on a personal level.
For these reasons, it concerns me that he actually has a shot of being the first person claiming to be on the spectrum who will gain one of the coveted board of directors positions at autism speaks.
One would think that neurodiversity would be celebrating and dancing in the street that one of their own has a realistic shot of getting that big score, one of their own, being on the board. Apparently not. Sarah has certainly called him to task. The much nastier ND, "the autistic bitch from hell" has not minced her own words and has referred to Carley as a "curebie suckup" and a "quisling", slurs that the ND community has called your humble blogger in the past.
Carley's ND detractors rightfully see him as someone who may have an ulterior motive in being involved with a pro-cure organization when Carley himself has said that a cure should not be found. Carley, an author, and autism lecturer, it would seem, makes a good portion of his living on the backs of persons with Asperger's and autism. He sees what a good idea it is to get involved with this organization. Amazing, Sarah, ABFH and I all agree on something! So, apparently Carley's appointment to the board won't shut up the ND lobbyists who so adamantly insist that one of their own be appointed to the board of directors.
Carley's behavior may be, however, what it takes to get one of their own on the board. Here you have it ND's, one of your own may soon be on the board of autism speaks. He will lobby for acceptance rather than cure in the board meetings. He will lobby for the politically correct language you so desire. But somehow it would seem you are not happy with this. You see Carley for what he is. But you wanted someone on the spectrum on the board. Now you may have it. Perhaps in the future you neurodiversity proponents should be careful what you wish for.
For some reason that remains a mystery to your humble blogger it is more important to these people to have someone serve as board of director of an organization to whose goals they have overt hostility than it is for autism speaks to employ someone with autism in their organization. I am not sure what the unemployment rate is among persons with autism, but it is a good guess that it is mighty high. I have previously written about the autism and the workplace promotion (which I won't link to) done by autism speaks in spite of the salient absence of a paid autistic employee in their group.
One of the arguments made for putting a spectrumite on the board of directors of AS is that other autism organizations have persons on the spectrum in position of power. For example one of the board members of ASA is Valerie Paradiz, a Ph.D. in German literature, a former college professor, published author of a memoir and now an autism consultant and lecturer. She makes the claim (which I am skeptical of) that she herself is on the spectrum. I am mystified how this person gives a voice to someone like Dov Shestack or John Belmonte or any other non-speaking person with autism who requires round-the-clock care. Or even for someone on the spectrum relatively high functioning such as myself.
It seems as though persons with autism who believe in an neurodiversity perspective may have cause to celebrate. It would seem that one of their own, Michael John Carley, who like Dr. Paradiz has a published memoir and is an autism lecturer (though not sure if he is a consultant) seems to have quite a friendly relationship with autism speaks. He has had AS president, Mark Roithmayr give his book a shout-out. He and former autism speaks executive, Allison Tepper Singer exchanged some articles of understanding in which they publicly exchanged views.
Given the controversy over the recent "I am autism" video. Carley has weighed in with his perspective. A neurodiversity blogger, Sarah, a cat in a dog's world, has
given her take on Carley's perspective. We see from reading this that though Carley has never met Bob or Suzanne Wright he has met their grandson. So, there seems to be a friendship between Carley and some persons in AS. (though Tepper-Singer is no longer with the organization). Carley has tried to talk up autism speaks. He has disingenuously claimed that they are talking less about a cure. Sarah correctly called him on this.
One place where Carley did hit the nail on the head was his assertion that certain individuals were jealous of the Wright's financial situation. Now this is probably the real reason ND wants an autistic person on the board-particularly an autistic who shares their perspective. They can't acquire the capital for their activities, so by getting on the board of autism speaks, they will be in a better position to acquire it for their own ends.
Carley talks about how the research autism speaks will have some sort of global benefit. This is in spite of the fact that he has spoken for all autistics preaching the familiar "acceptance not cure" mantra on radio interviews. In his book "Asperger's from the Inside out" Carley has claimed that there is a universal feeling among those on the spectrum that they should not be cured. Naturally he neglected to consult either Roger Kulp or myself or any other pro-cure autistic.
Carley who was able to get married, have children, work in a decent paying job and likely never spent a day of his life in a special education school, did not find out he had AS until age 36. Only after his son was diagnosed with an autism spectrum disorder. This is the reason I only read bits and portions of his book and not the entire book. I do not feel he has anything to offer to me about information about the spectrum on a personal level.
For these reasons, it concerns me that he actually has a shot of being the first person claiming to be on the spectrum who will gain one of the coveted board of directors positions at autism speaks.
One would think that neurodiversity would be celebrating and dancing in the street that one of their own has a realistic shot of getting that big score, one of their own, being on the board. Apparently not. Sarah has certainly called him to task. The much nastier ND, "the autistic bitch from hell" has not minced her own words and has referred to Carley as a "curebie suckup" and a "quisling", slurs that the ND community has called your humble blogger in the past.
Carley's ND detractors rightfully see him as someone who may have an ulterior motive in being involved with a pro-cure organization when Carley himself has said that a cure should not be found. Carley, an author, and autism lecturer, it would seem, makes a good portion of his living on the backs of persons with Asperger's and autism. He sees what a good idea it is to get involved with this organization. Amazing, Sarah, ABFH and I all agree on something! So, apparently Carley's appointment to the board won't shut up the ND lobbyists who so adamantly insist that one of their own be appointed to the board of directors.
Carley's behavior may be, however, what it takes to get one of their own on the board. Here you have it ND's, one of your own may soon be on the board of autism speaks. He will lobby for acceptance rather than cure in the board meetings. He will lobby for the politically correct language you so desire. But somehow it would seem you are not happy with this. You see Carley for what he is. But you wanted someone on the spectrum on the board. Now you may have it. Perhaps in the future you neurodiversity proponents should be careful what you wish for.
Sunday, October 4, 2009
Yet another attempt by neurodiversity to bring back Bettelheim
I have been told by at least a couple of members of the neurodiversity movement who have links to the autism hub (hub of hate would be a much more apt name), and whom Kathleen Seidel* has deemed as members in good standing, that the reason for my problems is not a neurologic impairment that incapacitates me but rather that I had a mean domineering mother who taught me to hate myself. It was because of her attitudes that I have all of these problems and unhappiness. They have gone even farther than this calling my mother "a witch" "a shrew" and a "yapping bitch" claiming that because I never happen to mention my dad in my posts that he must have been driven off by her.
Does any of this sound familiar to anyone? No, probably not. It does to me however, because I actually lived through the Bettelheim era as a toddler and small child in the late 1950s and 1960s. I spent approximately ten years in psychoanalysis and had to hear about how my parents went to paint our new house and neglected me and this is what caused my problems. I had to hear about how they happened to let me see my sister naked (my sister is three years younger and the onset of the autism happened around the time she was born) that I noticed she lacked something I had (I think most readers can guess what this is) and that I believed they had cut hers off and that I had worried my parents would cut mine off.
My mother had to hear this shit and it was psychologically damaging to her also. Sometimes she would actually break down and cry during her meetings with my psychoanalyst when she would hear this stuff. The fringe cult of neurodiversity which has done absolutely nothing to benefit persons with autism and related disorders yet has caused immense harm and damage to those on the spectrum and their families has done another thing and that is attempt to bring back this era that I and my parents actually lived through.
It seems that the hub has yet two new additions to their merry band of hate mongers that they have added to their hub of bigotry. two august bloggers who call themselves Turner and Kowalski These two allege (in an apparently intentionally incoherent rant) that parents of autistic children who wish a cure for their children and are unhappy about their child's autism are like members of the Ku Klux Klan who are forced to raise black children.
This type of drivel is read by young impressionable people who are unhappy with being autistic because it has made their life difficult and admittedly they themselves have faced discrimination in the past from society which has caused them to be embittered. I see that the teenage ingenue "sadder but wiser girl" who in the past has compared me to a Jew that helped Nazis kill other Jews in the past has weighed in:
Wow. That was quite a rant. I had to read it thrice to understand it, what with all the fucks and the color switching. But it was very accurate. The Autism Speaks people do sometimes remind me of KKK members forced to raise black children. About the Godwin’s Law thing, you didn’t even mention the Holocaust, but this situation strangely is comparable to the Nazis spreading hate speech about Jews.
Neurodiversity claims they want to make autistics have a good image, but we seem from posts such as Kowalksi and Turner have written and the impression they have made on a minor child, it would seem neurodiversity and the autism hub only tarnish the image of persons with autism and make us look spiteful and hateful and bigoted.
Dave Seidel: If you happen to read this. You are not doing autistics and their families favors by linking blogs that spew out this hateful crap. But it figures, as you really know nothing about autism except having a couple of quirky kids.
The ND movement has been getting more press and media attention. They have been getting more power and they even conned autism speaks into donating half a million dollars to their cause.
When Andrew Solomon's article about Ari Ne'eman and the rest of the ND movement came out, Lenny Schaeffer was quoted as urging Solomon not to write about these people because of the harm they do. I must respectfully disagree with Mr. Schaeffer. I hope the ND's continue to get even more media publicity. I hope more people will write about them. As they become well known people will read the autism hub and read insane blogs such as Kowalski and Turner's odditorial board and they will get bad publicity and most sane people will realize what a scam the whole ND movement is.
*Addendum: I have been informed by Dave Seidel that his wife, Kathleen, has no role in actually running the hub, and the Seidels do not unilaterally decide who can or can't join, but this is done by mutual consensus of hub members. Therefore I have edited the content of the original post putting a * by Kathleen's name in the first entry, striking out a reference to her in two other entries and addressing my comment originally directed to both Kathleen and Dave solely to Dave as an administrator of the hub. Regardless of how members are chosen to be listed by the hub, as at least one of the hub administrators I feel he bears at least some responsibility for the content of blogs that are linked to the hub. Since he refuses to justify his actions to me and won't denounce the Kowalski and Turner post, I believe I can still hold him complicit with the posting of the idea that parents who wish to cure their autistic children are akin to members of the KKK who are forced to raise black children.
Does any of this sound familiar to anyone? No, probably not. It does to me however, because I actually lived through the Bettelheim era as a toddler and small child in the late 1950s and 1960s. I spent approximately ten years in psychoanalysis and had to hear about how my parents went to paint our new house and neglected me and this is what caused my problems. I had to hear about how they happened to let me see my sister naked (my sister is three years younger and the onset of the autism happened around the time she was born) that I noticed she lacked something I had (I think most readers can guess what this is) and that I believed they had cut hers off and that I had worried my parents would cut mine off.
My mother had to hear this shit and it was psychologically damaging to her also. Sometimes she would actually break down and cry during her meetings with my psychoanalyst when she would hear this stuff. The fringe cult of neurodiversity which has done absolutely nothing to benefit persons with autism and related disorders yet has caused immense harm and damage to those on the spectrum and their families has done another thing and that is attempt to bring back this era that I and my parents actually lived through.
It seems that the hub has yet two new additions to their merry band of hate mongers that they have added to their hub of bigotry. two august bloggers who call themselves Turner and Kowalski These two allege (in an apparently intentionally incoherent rant) that parents of autistic children who wish a cure for their children and are unhappy about their child's autism are like members of the Ku Klux Klan who are forced to raise black children.
This type of drivel is read by young impressionable people who are unhappy with being autistic because it has made their life difficult and admittedly they themselves have faced discrimination in the past from society which has caused them to be embittered. I see that the teenage ingenue "sadder but wiser girl" who in the past has compared me to a Jew that helped Nazis kill other Jews in the past has weighed in:
Wow. That was quite a rant. I had to read it thrice to understand it, what with all the fucks and the color switching. But it was very accurate. The Autism Speaks people do sometimes remind me of KKK members forced to raise black children. About the Godwin’s Law thing, you didn’t even mention the Holocaust, but this situation strangely is comparable to the Nazis spreading hate speech about Jews.
Neurodiversity claims they want to make autistics have a good image, but we seem from posts such as Kowalksi and Turner have written and the impression they have made on a minor child, it would seem neurodiversity and the autism hub only tarnish the image of persons with autism and make us look spiteful and hateful and bigoted.
Dave Seidel: If you happen to read this. You are not doing autistics and their families favors by linking blogs that spew out this hateful crap. But it figures, as you really know nothing about autism except having a couple of quirky kids.
The ND movement has been getting more press and media attention. They have been getting more power and they even conned autism speaks into donating half a million dollars to their cause.
When Andrew Solomon's article about Ari Ne'eman and the rest of the ND movement came out, Lenny Schaeffer was quoted as urging Solomon not to write about these people because of the harm they do. I must respectfully disagree with Mr. Schaeffer. I hope the ND's continue to get even more media publicity. I hope more people will write about them. As they become well known people will read the autism hub and read insane blogs such as Kowalski and Turner's odditorial board and they will get bad publicity and most sane people will realize what a scam the whole ND movement is.
*Addendum: I have been informed by Dave Seidel that his wife, Kathleen, has no role in actually running the hub, and the Seidels do not unilaterally decide who can or can't join, but this is done by mutual consensus of hub members. Therefore I have edited the content of the original post putting a * by Kathleen's name in the first entry, striking out a reference to her in two other entries and addressing my comment originally directed to both Kathleen and Dave solely to Dave as an administrator of the hub. Regardless of how members are chosen to be listed by the hub, as at least one of the hub administrators I feel he bears at least some responsibility for the content of blogs that are linked to the hub. Since he refuses to justify his actions to me and won't denounce the Kowalski and Turner post, I believe I can still hold him complicit with the posting of the idea that parents who wish to cure their autistic children are akin to members of the KKK who are forced to raise black children.
Thursday, October 1, 2009
wanted, info on fine motor coordination and low score on block design test, etc.
To Anyone It May Concern:
I am a person with a neurologic impairment that presents with autistic symptoms, such as self-stimulatory behaviors and impairments in the social sphere who has a fine motor coordination impairment and perceptual motor impairment. This greatly impairs my ability to handwrite and put together puzzles and do other types of motor activities. I also had trouble learning how to tie my shoes which I was not able to do at all until I was about 8 years old. To this day, I still have trouble tying a knot very tightly and the laces in my tennis shoes often become loose and have to be retied. Also, my gross motor coordination is probably below average in that I have never been very athletic, but it is not as bad as my fine motor coordination.
On psychological testing, I score approximately 40 points higher on my verbal Wechsler IQ than on my performance IQ. On two of the subtests of the Wechsler performance, the object assembly and block design tests, I score in the severely retarded range. This is contrary to the findings of Uta Frith and other autism researchers who have found that a number of persons diagnosed with autism score in the superior range in the block design test.
I also have an abnormal score on the Bender-Gestalt test, making many more errors than a non-handicapped person. At one time, this test was considered definitive evidence that I have a brain dysfunction.
Alan Lincoln, a psychologist who used to work with Eric Courchesne, suggested this meant that I had Asperger's syndrome rather than classic autism as persons with Asperger's have been noted to be clumsy. One problem with this is that I had a speech delay at about age 2-1/2 (or perhaps younger), and Asperger's and regular autism are usually differentiated from each other by lack of speech delay in the former.
I think a good number of persons with autism have good manual dexterity and have no trouble putting together puzzles. In fact some persons diagnosed with autism have extraordinary talents for drawing. Two examples of this are Stephen Wiltshire and the lesser known Stephanie Lynn Keil.
At one time I have been classified as "fine motor coordination problem". I was also told that I have a perceptual problem. In my readings (which may be limited) I have never really come across a diagnosis like this, except occasionally for case reports of persons with Tourette's syndrome or ADHD who had problems with handwriting or fine motor coordination.
I have also heard of something called nonverbal learning disability. I am not sure if this applies to my symptoms or not.
In my readings of perceptual problems, they have always seemed to apply to persons with dyslexia or perhaps other types of reading difficulties. I have never read about perceptual problems applying to fine motor coordination skills or abilities to put puzzles together or do block designs correctly.
I was wondering if anyone knows about autistics with fine motor coordination problems or problems with block design test, if there is anything in the academic literature that has been published about this or if anyone can tell me more about perceptual problems that don't affect reading ability but affect the ability to put together puzzles etc.
If anyone has some information about this I would appreciate it if they could post a comment here or send me email.
Much thanks,
Jon Mitchell
I am a person with a neurologic impairment that presents with autistic symptoms, such as self-stimulatory behaviors and impairments in the social sphere who has a fine motor coordination impairment and perceptual motor impairment. This greatly impairs my ability to handwrite and put together puzzles and do other types of motor activities. I also had trouble learning how to tie my shoes which I was not able to do at all until I was about 8 years old. To this day, I still have trouble tying a knot very tightly and the laces in my tennis shoes often become loose and have to be retied. Also, my gross motor coordination is probably below average in that I have never been very athletic, but it is not as bad as my fine motor coordination.
On psychological testing, I score approximately 40 points higher on my verbal Wechsler IQ than on my performance IQ. On two of the subtests of the Wechsler performance, the object assembly and block design tests, I score in the severely retarded range. This is contrary to the findings of Uta Frith and other autism researchers who have found that a number of persons diagnosed with autism score in the superior range in the block design test.
I also have an abnormal score on the Bender-Gestalt test, making many more errors than a non-handicapped person. At one time, this test was considered definitive evidence that I have a brain dysfunction.
Alan Lincoln, a psychologist who used to work with Eric Courchesne, suggested this meant that I had Asperger's syndrome rather than classic autism as persons with Asperger's have been noted to be clumsy. One problem with this is that I had a speech delay at about age 2-1/2 (or perhaps younger), and Asperger's and regular autism are usually differentiated from each other by lack of speech delay in the former.
I think a good number of persons with autism have good manual dexterity and have no trouble putting together puzzles. In fact some persons diagnosed with autism have extraordinary talents for drawing. Two examples of this are Stephen Wiltshire and the lesser known Stephanie Lynn Keil.
At one time I have been classified as "fine motor coordination problem". I was also told that I have a perceptual problem. In my readings (which may be limited) I have never really come across a diagnosis like this, except occasionally for case reports of persons with Tourette's syndrome or ADHD who had problems with handwriting or fine motor coordination.
I have also heard of something called nonverbal learning disability. I am not sure if this applies to my symptoms or not.
In my readings of perceptual problems, they have always seemed to apply to persons with dyslexia or perhaps other types of reading difficulties. I have never read about perceptual problems applying to fine motor coordination skills or abilities to put puzzles together or do block designs correctly.
I was wondering if anyone knows about autistics with fine motor coordination problems or problems with block design test, if there is anything in the academic literature that has been published about this or if anyone can tell me more about perceptual problems that don't affect reading ability but affect the ability to put together puzzles etc.
If anyone has some information about this I would appreciate it if they could post a comment here or send me email.
Much thanks,
Jon Mitchell
Tuesday, September 29, 2009
Ari Ne'eman gives input on autistics in workplace
I recently came across an interesting piece about some autistics in the workplace. These always hit home with me because of the tremendous employment problems that I have had as well as the simplistic quick fixes that are given by so many, such as disclosure and Temple Grandin's things about mentors.
I see that neurodiversity's lead spokesperson, Ari Ne'eman has decided to give his $.02 worth when he was interviewed by the author of this article.
Ne'eman states:
Aside from communication barriers, other challenges can impede autistic workers, such as sensory sensitivity to fluorescent lights or inability to understand directions for a job, said Ari Ne’eman, a 21-year-old with autism who grew up in East Brunswick and founded The Autistic Self Advocacy Network.
even more intriguing statement from Ne'eman:
Social pleasantry should be eliminated as criteria for hiring and a good job evaluation, Ne’eman said.
For those who don't know, Ne'eman is a 21 (maybe 22) year old kid who has never had a job of any kind or made a dollar in his life from working-at least he acknowledged this the last time I had contact with him and discussed this issue, though I realize this may have changed. Even if Ne'eman's situation has changed (which I doubt), he still has essentially no actual work experience.
As a person on the spectrum (autism not Asperger's syndrome unlike Ne'eman) who has been fired from nearly 20 jobs, yet who did manage to work sporadically for more years than Ne'eman has been alive, I resent him trying to give input on the autistics in the workplace. Never having worked, he knows nothing of the problems that people with disabilities face in the workplace. He is totally ignorant of anything involving working for a paycheck and making a living.
Apparently from these statements we see that Ne'eman feels that it is okay for an employee to behave on the job in any manner in which they choose if they have autism. Interestingly enough this does not jive at all with his previous statements that insanity defenses should be done away with for people on the spectrum charged with crimes as this will cause them not to have equality with NTs.
Ne'eman wrote:
If Asperger’s is a justifiable excuse for criminal action, what right do we have to demand an equal place in a society of law-abiding human beings? When a college student caught engaging in arson suddenly claims Asperger’s so as to avoid being held accountable for his actions, what does it say about all other law abiding autistics?
Someone working in a customer service or waitressing job should just be able to tell the customer to "fuck off" if they are autistic or Asperger's and feel like doing this. If the employer were to fire them, they would be a bigot, violating this autistic person's civil rights.
Well, as one of my favorite human beings, Clay Adams, would say, wish in one hand, shit in the other and see which one fills up first. Ne'eman and the ND movement are dreaming if they think this is ever going to happen. That society will accommodate people with autism no matter how they behave and how offensive their behavior is.
Even more intriguing than Ne'eman's inconsistent statements saying ASD'ers should be culpable for crimes they have committed is that these statements about social unpleasantries being overlooked are totally inconsistent with previous statements he has made on this same subject in the past, which come from the previous link:
If Asperger’s means an inability to help breaking the law, all of us are incapable of avoiding lawbreaking. As someone who hopes to work in law eventually, I am not too keen on the message this sends to my future prospective employers. “Asperger’s autistics,” says this argument, “are a risk to your workplace environment. They could go off at any moment- it’s just who they are.”
Ne'eman, who has commented that because of Allison Tepper Singer's admittedly dumb remark, that this caused a bunch of parents of autistic children to go out and murder their children and that autism speaks is morally complicit with murder, certainly knows about making a faux pas. Perhaps he is worried that when he actually goes out into the world and tries to support himself that he might get into trouble due to some sort of social skill impairment his Asperger's causes him. Perhaps this is why he is so concerned about employer's judging employees by their social pleasantries.
Of course the ND philosopy on John Best (a possible spectrumite) is not consistent with this. John Best's caustic speech and blog posts towards the ND's he despises so much are not overlooked by Ari Ne'eman and the others. Virtually all of them have banned him from their blogs, constantly vilify him and never overlook his mean behavior. Perhaps the ND's should practice what they preach. If that were the case Best's lack of social pleasantry in his posts would be overlooked and all of the ND bloggers would welcome him with open arms rather than banning him.
But these sort of inconsistencies and crapolla are par for the course for ND. So let's all say it together gadfly readers, WE DON'T NEED NO STINKIN' NEURODIVERSITY!
I see that neurodiversity's lead spokesperson, Ari Ne'eman has decided to give his $.02 worth when he was interviewed by the author of this article.
Ne'eman states:
Aside from communication barriers, other challenges can impede autistic workers, such as sensory sensitivity to fluorescent lights or inability to understand directions for a job, said Ari Ne’eman, a 21-year-old with autism who grew up in East Brunswick and founded The Autistic Self Advocacy Network.
even more intriguing statement from Ne'eman:
Social pleasantry should be eliminated as criteria for hiring and a good job evaluation, Ne’eman said.
For those who don't know, Ne'eman is a 21 (maybe 22) year old kid who has never had a job of any kind or made a dollar in his life from working-at least he acknowledged this the last time I had contact with him and discussed this issue, though I realize this may have changed. Even if Ne'eman's situation has changed (which I doubt), he still has essentially no actual work experience.
As a person on the spectrum (autism not Asperger's syndrome unlike Ne'eman) who has been fired from nearly 20 jobs, yet who did manage to work sporadically for more years than Ne'eman has been alive, I resent him trying to give input on the autistics in the workplace. Never having worked, he knows nothing of the problems that people with disabilities face in the workplace. He is totally ignorant of anything involving working for a paycheck and making a living.
Apparently from these statements we see that Ne'eman feels that it is okay for an employee to behave on the job in any manner in which they choose if they have autism. Interestingly enough this does not jive at all with his previous statements that insanity defenses should be done away with for people on the spectrum charged with crimes as this will cause them not to have equality with NTs.
Ne'eman wrote:
If Asperger’s is a justifiable excuse for criminal action, what right do we have to demand an equal place in a society of law-abiding human beings? When a college student caught engaging in arson suddenly claims Asperger’s so as to avoid being held accountable for his actions, what does it say about all other law abiding autistics?
Someone working in a customer service or waitressing job should just be able to tell the customer to "fuck off" if they are autistic or Asperger's and feel like doing this. If the employer were to fire them, they would be a bigot, violating this autistic person's civil rights.
Well, as one of my favorite human beings, Clay Adams, would say, wish in one hand, shit in the other and see which one fills up first. Ne'eman and the ND movement are dreaming if they think this is ever going to happen. That society will accommodate people with autism no matter how they behave and how offensive their behavior is.
Even more intriguing than Ne'eman's inconsistent statements saying ASD'ers should be culpable for crimes they have committed is that these statements about social unpleasantries being overlooked are totally inconsistent with previous statements he has made on this same subject in the past, which come from the previous link:
If Asperger’s means an inability to help breaking the law, all of us are incapable of avoiding lawbreaking. As someone who hopes to work in law eventually, I am not too keen on the message this sends to my future prospective employers. “Asperger’s autistics,” says this argument, “are a risk to your workplace environment. They could go off at any moment- it’s just who they are.”
Ne'eman, who has commented that because of Allison Tepper Singer's admittedly dumb remark, that this caused a bunch of parents of autistic children to go out and murder their children and that autism speaks is morally complicit with murder, certainly knows about making a faux pas. Perhaps he is worried that when he actually goes out into the world and tries to support himself that he might get into trouble due to some sort of social skill impairment his Asperger's causes him. Perhaps this is why he is so concerned about employer's judging employees by their social pleasantries.
Of course the ND philosopy on John Best (a possible spectrumite) is not consistent with this. John Best's caustic speech and blog posts towards the ND's he despises so much are not overlooked by Ari Ne'eman and the others. Virtually all of them have banned him from their blogs, constantly vilify him and never overlook his mean behavior. Perhaps the ND's should practice what they preach. If that were the case Best's lack of social pleasantry in his posts would be overlooked and all of the ND bloggers would welcome him with open arms rather than banning him.
But these sort of inconsistencies and crapolla are par for the course for ND. So let's all say it together gadfly readers, WE DON'T NEED NO STINKIN' NEURODIVERSITY!
I should be working on my novel instead of writing this blog post
I should be working on my novel instead of this blog post. However, the writing and the research that has been required to write this novel has been very hard for me. It is about an autistic poker player. I would prefer not to go into more detail other than that. I have now written approximately 59,000 words which I am estimating is a little more than half a first draft. It has been very hard to apply myself and carry out this task. There is a good chance I will never get much further than what I have now.
Since I was about 13 I dreamed of being a writer. I first attempted to write a novel at age 14. In spite of all my other impairments I was a pretty fast typist, especially for someone aged 14 in those days. I used a typewriter before personal computers and word processors were invented, which may seem like ancient history to some of my younger readers who might not even remember typewriters except as antiques. Because my brain dysfunction not only caused autism type symptoms but also caused perceptual motor and handwriting impairments, I learned how to type at a relatively young age, especially for the 1960s, so I was able to type parts of my first novel which dealt with two mentally retarded individuals, meeting and becoming friends and fighting a system that had wronged them. Writing a novel is quite an undertaking, especially for someone aged 14. It is an even greater undertaking for a 14-year-old who at the time had had practically no mainstream education at all, having been in special ed schools up until that time. I was never able to get very far into the novel and other attempts to write novels were failures. I did still dream of becoming a best selling novelist and using my disability as a selling point or gimmick to achieve that goal. This was again another pipe dream or castle made of sand (from the old Jimi Hendrix song).
At about age 38, I had a friend who was a very prolific short story writer and when I told him about my frustrations at never having been able to write a novel he suggested I try short stories first. He was right. Short stories were easier, did not require as much research and seemed to be a potential novelist’s baby steps. I ended up writing 16 short stories some of which I have on my website
At about age 45 I decided to make another attempt at writing a novel. I ended up finishing a first draft and then some rewriting, my first novel! The novel dealt with an autistic boy in an abusive special ed school and his parents dealing with the frustrating bureaucracies of the IDEA law and special education. I also met a free lance journalist who did stories for NPR stations. She felt this would be a good story for the show This American Life. Getting on this show would greatly increase my chances of getting the novel published and being able to utilize "the gimmick" that I had dreamed about. I was told my novel would probably need work after submitting it to some literary agents and getting rejected. This American Life decided not to include me on their radio show which was devastating. As I worked with various book doctors it became evident my potential bestseller would in fact have to be written over again from scratch!. My friend, Tamar Brott, was able to get another national radio show, studio 360, to do the story of my novel. The show was originally broadcast in late 2002, then about a year and a half ago Tamar's interview with me was recycled on a show which they did about autism You can listen to the show with the recycled interview here. I may be the only person in history who was told my novel was worthless and had to be written over who then a month later was broadcast reading it on an NPR show. I finally shelved the novel as a failed first novel.
I wrote some more short stories, some more non-fiction including my article questioning the autism of Bill Gates and others. Now I am working on the second novel. Not sure how well it will ever go or whether I am capable of writing a novel ready for submission for publication. However, I do question some of the ‘rules’ of the book doctor who pronounced my first novel DOA. Certainly the rule about not using adverbs does not seem applicable or it would mean that Ian Fleming and John Steinbeck were bad fiction writers.
Maybe someday I will devote more time to writing the novel than to blogging, but in the meantime I guess if I want to do a slightly easier endeavor I always have autism’s gadfly.
Since I was about 13 I dreamed of being a writer. I first attempted to write a novel at age 14. In spite of all my other impairments I was a pretty fast typist, especially for someone aged 14 in those days. I used a typewriter before personal computers and word processors were invented, which may seem like ancient history to some of my younger readers who might not even remember typewriters except as antiques. Because my brain dysfunction not only caused autism type symptoms but also caused perceptual motor and handwriting impairments, I learned how to type at a relatively young age, especially for the 1960s, so I was able to type parts of my first novel which dealt with two mentally retarded individuals, meeting and becoming friends and fighting a system that had wronged them. Writing a novel is quite an undertaking, especially for someone aged 14. It is an even greater undertaking for a 14-year-old who at the time had had practically no mainstream education at all, having been in special ed schools up until that time. I was never able to get very far into the novel and other attempts to write novels were failures. I did still dream of becoming a best selling novelist and using my disability as a selling point or gimmick to achieve that goal. This was again another pipe dream or castle made of sand (from the old Jimi Hendrix song).
At about age 38, I had a friend who was a very prolific short story writer and when I told him about my frustrations at never having been able to write a novel he suggested I try short stories first. He was right. Short stories were easier, did not require as much research and seemed to be a potential novelist’s baby steps. I ended up writing 16 short stories some of which I have on my website
At about age 45 I decided to make another attempt at writing a novel. I ended up finishing a first draft and then some rewriting, my first novel! The novel dealt with an autistic boy in an abusive special ed school and his parents dealing with the frustrating bureaucracies of the IDEA law and special education. I also met a free lance journalist who did stories for NPR stations. She felt this would be a good story for the show This American Life. Getting on this show would greatly increase my chances of getting the novel published and being able to utilize "the gimmick" that I had dreamed about. I was told my novel would probably need work after submitting it to some literary agents and getting rejected. This American Life decided not to include me on their radio show which was devastating. As I worked with various book doctors it became evident my potential bestseller would in fact have to be written over again from scratch!. My friend, Tamar Brott, was able to get another national radio show, studio 360, to do the story of my novel. The show was originally broadcast in late 2002, then about a year and a half ago Tamar's interview with me was recycled on a show which they did about autism You can listen to the show with the recycled interview here. I may be the only person in history who was told my novel was worthless and had to be written over who then a month later was broadcast reading it on an NPR show. I finally shelved the novel as a failed first novel.
I wrote some more short stories, some more non-fiction including my article questioning the autism of Bill Gates and others. Now I am working on the second novel. Not sure how well it will ever go or whether I am capable of writing a novel ready for submission for publication. However, I do question some of the ‘rules’ of the book doctor who pronounced my first novel DOA. Certainly the rule about not using adverbs does not seem applicable or it would mean that Ian Fleming and John Steinbeck were bad fiction writers.
Maybe someday I will devote more time to writing the novel than to blogging, but in the meantime I guess if I want to do a slightly easier endeavor I always have autism’s gadfly.
Monday, September 28, 2009
Sometimes I still think about medical transcription
Doing medical transcription was what I did before I stopped working because it was too difficult. Medical transcription is the job of transcribing doctor’s dictation into medical records. For example when you go to the hospital, there is a record that the hospital is legally required to keep called a discharge summary. This tells about what happened when you were in the hospital, all the tests you took, your condition, etc. Or when you have surgery, a record called an operative report is required. Also sometimes histories and physicals, where the doctor tells about the history of your illness and your results on physical examinations. There are also other types of medical transcriptions including clinic things and workers' comp reports which are easier than the hospital transcription.
In 1985 I was unemployed and having a hard time making a living. It was recommended that I undergo training with the state of California department of rehabilitation which is designed to help disabled people find work. They recommended that due to my typing ability I go into medical transcription. I was treated very badly by the department of rehabilitation I have written about this elsewhere and it does not need repeating here In spite of what these bastards/bitches did, I was able to find an entry level gig in medical transcription. It was as an independent contractor doing hospital transcription for a transcription service.
I was paid on production (standard way of paying transcriptionists) a low rate $.06/line, a line being 65 characters. I probably made about $1.50 an hour when I was first doing it.
In addition to male transcriptionists being a very small minority, the work was incredibly difficult. It involved having to know tens of thousands of arcane medical words and phrases and knowing how to spell them properly. Some of the doctors were from foreign countries and had accents that were horrifically hard to understand. Even some American doctors would slur their words, mumble and often be unintelligible. I knew I had an uphill battle if I were to be able to be a hospital transcriptionists, but all my life I have worked hard and given everything my damndest in spite of this horrific disability.
The pay was solely on production, though the work was not uniform. For example a person could make a substantially higher rate of pay from much longer reports than from shorter reports or if the doctor dictating the report was clear and easier to understand than other doctors. Some of the jobs were independent contract rather than being an employee, so you had to pay double the social security tax, there was no workers’ comp insurance and no paid vacations. Most ironic of all there were no benefits, so a person doing work indispensable to the medical profession sometimes had no employer provided medical insurance. There were other expenses that I had to incur later on, but more about that later.
The work at my first gig slowed down and then I tried to find some other things and I was fired from some places but managed to find a few places that would allow me to work for them. I was tired of making a poverty wage, so I tried to find something better, in spite of my lack of experience. I was fired again from various places. I had no idea how people were able to transcribe these unintelligible doctors and do this job correctly. Eventually I found a medical group which was clinic work and somewhat easier than the hospital stuff. There was an Indian doctor there who I had a hard time with and he insisted the other transcriptionist there do his work. I had some trouble with a few other doctors and got fired from there after about a year and a half. I had various other jobs and came very close to giving up the ghost.
After a succession of jobs I acquired an independent contract job doing hospital work, though fortunately no operative reports in which my experience was limited. I worked at home for the first time rather than in an office and I had to provide my own reference books. All of the necessary references books cost between $400-500. On top of this I had to put an additional telephone land line in my home and pay for it and I obtained the work through a device called a C phone. I had to rent this from the people I contracted for, for about $30 a month. The other option was to buy one new for $800. I had to do this work through the telephone lines and no toll free number was provided by the hospital. Fortunately it was still feasible to do this work as the hospital was a toll free number from where I lived. After being fired from this job, then reinstated, I learned I was required to buy my own C phone as supposedly the people I worked for could not legally rent one to me as I was an independent contractor.
Used, this was about $500. I had no idea where I could have obtained one more cheaply. I was able to do more lines at this job than at the others I had and my gross pay was probably $15-16 an hour or maybe more on good runs. Of course you had to deduct about 5% of that for the additional social security tax I was forced to pay as a legally self-employed person. Eventually this gig ended when Kaiser Permanente (I did the transcription for one of the chains of hospital this HMO giant has) acquired a new "health connect" system which cut our work by about 50% or more. I was not able to find another job and keep it.
As my regular readers know I have retired and for the past two years since I have retired I have been trying to qualify for SSDI which I am not likely to ever receive. C phones have become largely obsolete and transcription is now received through digitized .wav files. This meant that I was stuck with a $500 investment that I could not recoup anything on. I did try to sell my reference books on Craig’s list for a while but had no success.
I remember hearing about how Temple Grandin was claiming that medical transcription was among one of the bad jobs for an autistic person because of hearing sensitivity issues. I had to laugh at that, because albeit not perfect it was a good job for me, because I could do all the work without having to interact with others most of the time, especially when I worked at home. The joke was on me when I met Grandin last year at the 2008 ASA conference in Orlando, Florida and told her what my former profession was and how it had not completely worked out, and she reiterated her old saw about how I had entered a bad profession for an autistic person.
Of course, one can look at the perspective of the glass being half full. I did work a good portion of the time although it was difficult, but I did better at this than anything else and this did allow me to work for a period of time, although not until I would be old enough to receive retirement social security.
Though retirement has its nice aspects, I do miss working a bit. Working certainly helps people with self-esteem and self-worth. Lately I have been trying to pass the time by writing a novel. Actually I should be working on the novel instead of this blog post. However, I will post more about this in the future, maybe tomorrow, stay tuned.
In 1985 I was unemployed and having a hard time making a living. It was recommended that I undergo training with the state of California department of rehabilitation which is designed to help disabled people find work. They recommended that due to my typing ability I go into medical transcription. I was treated very badly by the department of rehabilitation I have written about this elsewhere and it does not need repeating here In spite of what these bastards/bitches did, I was able to find an entry level gig in medical transcription. It was as an independent contractor doing hospital transcription for a transcription service.
I was paid on production (standard way of paying transcriptionists) a low rate $.06/line, a line being 65 characters. I probably made about $1.50 an hour when I was first doing it.
In addition to male transcriptionists being a very small minority, the work was incredibly difficult. It involved having to know tens of thousands of arcane medical words and phrases and knowing how to spell them properly. Some of the doctors were from foreign countries and had accents that were horrifically hard to understand. Even some American doctors would slur their words, mumble and often be unintelligible. I knew I had an uphill battle if I were to be able to be a hospital transcriptionists, but all my life I have worked hard and given everything my damndest in spite of this horrific disability.
The pay was solely on production, though the work was not uniform. For example a person could make a substantially higher rate of pay from much longer reports than from shorter reports or if the doctor dictating the report was clear and easier to understand than other doctors. Some of the jobs were independent contract rather than being an employee, so you had to pay double the social security tax, there was no workers’ comp insurance and no paid vacations. Most ironic of all there were no benefits, so a person doing work indispensable to the medical profession sometimes had no employer provided medical insurance. There were other expenses that I had to incur later on, but more about that later.
The work at my first gig slowed down and then I tried to find some other things and I was fired from some places but managed to find a few places that would allow me to work for them. I was tired of making a poverty wage, so I tried to find something better, in spite of my lack of experience. I was fired again from various places. I had no idea how people were able to transcribe these unintelligible doctors and do this job correctly. Eventually I found a medical group which was clinic work and somewhat easier than the hospital stuff. There was an Indian doctor there who I had a hard time with and he insisted the other transcriptionist there do his work. I had some trouble with a few other doctors and got fired from there after about a year and a half. I had various other jobs and came very close to giving up the ghost.
After a succession of jobs I acquired an independent contract job doing hospital work, though fortunately no operative reports in which my experience was limited. I worked at home for the first time rather than in an office and I had to provide my own reference books. All of the necessary references books cost between $400-500. On top of this I had to put an additional telephone land line in my home and pay for it and I obtained the work through a device called a C phone. I had to rent this from the people I contracted for, for about $30 a month. The other option was to buy one new for $800. I had to do this work through the telephone lines and no toll free number was provided by the hospital. Fortunately it was still feasible to do this work as the hospital was a toll free number from where I lived. After being fired from this job, then reinstated, I learned I was required to buy my own C phone as supposedly the people I worked for could not legally rent one to me as I was an independent contractor.
Used, this was about $500. I had no idea where I could have obtained one more cheaply. I was able to do more lines at this job than at the others I had and my gross pay was probably $15-16 an hour or maybe more on good runs. Of course you had to deduct about 5% of that for the additional social security tax I was forced to pay as a legally self-employed person. Eventually this gig ended when Kaiser Permanente (I did the transcription for one of the chains of hospital this HMO giant has) acquired a new "health connect" system which cut our work by about 50% or more. I was not able to find another job and keep it.
As my regular readers know I have retired and for the past two years since I have retired I have been trying to qualify for SSDI which I am not likely to ever receive. C phones have become largely obsolete and transcription is now received through digitized .wav files. This meant that I was stuck with a $500 investment that I could not recoup anything on. I did try to sell my reference books on Craig’s list for a while but had no success.
I remember hearing about how Temple Grandin was claiming that medical transcription was among one of the bad jobs for an autistic person because of hearing sensitivity issues. I had to laugh at that, because albeit not perfect it was a good job for me, because I could do all the work without having to interact with others most of the time, especially when I worked at home. The joke was on me when I met Grandin last year at the 2008 ASA conference in Orlando, Florida and told her what my former profession was and how it had not completely worked out, and she reiterated her old saw about how I had entered a bad profession for an autistic person.
Of course, one can look at the perspective of the glass being half full. I did work a good portion of the time although it was difficult, but I did better at this than anything else and this did allow me to work for a period of time, although not until I would be old enough to receive retirement social security.
Though retirement has its nice aspects, I do miss working a bit. Working certainly helps people with self-esteem and self-worth. Lately I have been trying to pass the time by writing a novel. Actually I should be working on the novel instead of this blog post. However, I will post more about this in the future, maybe tomorrow, stay tuned.
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