I've previously written about Ari Ne'eman, an individual in his early 20s who has never had paid employment. In spite of his total lack of experience working, he seems to feel qualified to give input on solving the problems of unemployment among persons with autism.
As I mentioned before, one of Ne'eman's solutions was to eliminate social pleasantry as a hiring criteria or use it to evaluate an individual's work performance. Any individual who has spent even the briefest time in any workplace knows having good social skills is necessary to be and stay employed. No employer or fellow co-workers are going to overlook poor social skills and be patient with an autistic person who shouts at them, makes inappropriate comments or gropes women in the workplace. As John Robison pointed out in the comments section, no amount of legislation is ever going to change this.
It seems that Mr. Ne'eman is at it again, giving a presentation at the autism works conference on how people with autism can get and keep jobs.
It appears, in spite of my blog post, he has not given up on this idea. He presents a concept he refers to as "social architecture", borrowing from the Americans with Disabilities Act. The analogy he uses is the legal requirement that ramps be required for persons who use wheel chairs and in the same vein, autistics poor social skills can be accommodated in the workplace.
However, this apples to hurricanes analogy indeed falls flat. Social skills aren't walking and mobility. There is no way that the autistics' faux pas can be accommodated for in the workplace as mentioned above. Ne'eman seems quite vague in how this can be done. He does not seem to provide any specific analogy for wheel chair ramps, because there isn't one. There is no treatment that can mitigate the persons social skills. All the wishful thinking in the world on Ne'eman's part isn't going to make society overlook them.
Another issue, is that lack of social ability is probably not the largest factor in an autistics' inability to obtain employment. The impairments that prevented me from concentrating on work also lead to my termination from various positions. The fact that I and others like myself are too impaired to get adequate education and training for most jobs is yet another major issue. Ne'eman and other members of ASAN with virtually no work experience don't address these issues at all in their programs to help autistics find and keep jobs.
Ne'eman is also developing a resume bank designed for college graduates on the spectrum. However, I wonder about the percentage of autistics who actually graduate college with a four year degree. I strongly suspect it's quite low. Even for those high-functioning enough to obtain this education, there may not be much on a resume that is of use as most of them are quite young and don't have much experience in the career they're trying to pursue. Ne'eman is approaching a variety of private firms and attempting to address the issues of social barriers---the only comment I have is good luck in that endeavor.
Also, the mortgage company Freddie Mac has apparently entered into an agreement with ASAN to provide internships for those on the spectrum, Interestingly, Ne'eman is claiming these internships are paid positions, which seems odd as usually interns are people who volunteer in order to get experience.
It's interesting the neurodiversity movement would pick an organization that with its encouragement of subprime interest loans to persons who could never afford houses likely helped caused the largest economic crisis since the great depression. This organization (along with its sister Fannie Mae)went broke and cost the taxpayers more than 170 billion bucks in a bailout that has never been paid back. Gee, ASAN, you sure now how to pick a winner. I suspect an association with Freddie mac would be a liability on someone's resume, not an asset as Ne'eman is claiming, though I suppose I might be wrong about that.
As an individual on the spectrum who had great difficulty in the workplace, I resent Ne'eman discussing issues which he himself has no personal experience or knowlege. I don't believe it's productive for individuals to put up a conference offering simplistic solutions to real and hard problems.
I wish Ne'eman would go out and get a real job and actually get some life experience and work experience before trying to propose remedies.
Saturday, February 18, 2012
Wednesday, February 15, 2012
Study finds autism affects motor skills
It was with interest that I read about a new study showing that autism affects motor skills. Claudia Hilton and John Constantino of the University of Washington studied many children with autism on standardized tests of motor performance. They found that motor skills were saliently lacking in the vast majority of children they studied.
This relates to my own life as I have fairly bad motor impairments myself. I did not learn how to tie my shoes until age 8, and had great difficulty in performing this. Though I can print somewhat legibly with great effort, I still have a handwriting impairment and my scrawl looks very much like "brain-damaged" writing. I still remember in the early 1960s when I saw a variety of handwriting tutors and had to have my recess taken away for a brief time to find time to give me extra help in this area. I also had tutoring in perceptual motor skills designed to help these problems but to no avail. I have difficulty wrapping presents and other fine skilled movements. However, my ability to type is more than intact.
I wondered if this was part of my autism as I had read about Stephen Wiltshire, Temple Grandin and others with extraordinary fine motor skills. To this day, I have never met a person, autistic or otherwise, who has a "fine motor coordination problem" as I have. I had read that autistic persons generally score higher on the performance part of the Wechsler IQ test than on the verbal portion. With myself, the opposite is true, where there is about a 40 point discrepancy between my relatively high verbal IQ and low performance IQ. Some studies, such as the ones done by the Mottron group and Uta Frith as well as others, show that at least some autistics have superior ability in the block design test on the Wechsler performance. I score in the retarded range on this. So, I have wondered if there was a subtype of autism involving poor motor skills. It would appear, from this study, that I'm not the only one.
The authors of this study speculate that the brain processes that give rise to motor coordination and social skills are controlled by a common area. It's possible that the frontal lobes are a candidate as they mediate the mirror neuron areas which could be involved in social judgement. In a previous post I wrote about parallels in autism and frontotemporal dementia which included poor social skills. So, I have to wonder if this could be key to the etiology of my problems.
Some of the motor and perceptual impairments I have also exist in adult patients with lesions of the right hemisphere of the parietal lobes called constructional apraxia. However, I might not have this as Eric Courchesne pointed out to me that adult lesions and developmental lesions might have different etiologies. When their research group did an MRI scan on me, they found I had hypoplasia of lobules VI and VII of the cerebellar vermis as compared to a normal control. This could explain my good typing motor coordination. Perhaps if the cerebellar damage occurs early enough it won't affect some of the autistics motor performance. However, in light of this recent study, I wonder if the cerebellum could be involved. Though, I'm not sure if it is involved in social judgement.
What Courchesne told me may have been slightly contradicted in a study done in the 1970s by Ralph Maurer and Antonio Demasio showing parallels between autism and problems in adult neurology patients with frontal lobe and basal ganglia impairments.
The basal ganglia are other brain areas that are involved in motor performance.
The reticular formation is another. In 1964, Bernard Rimland speculated that this area may be involved in autism. I don't think there is any empirical evidence to back that up.
It was somewhat of a relief to read about this study, as it means I may not be as atypical an autistic as I thought. Knowing about motor impairments may someday give me a clue to the etiology of my problems. I await further research.
This relates to my own life as I have fairly bad motor impairments myself. I did not learn how to tie my shoes until age 8, and had great difficulty in performing this. Though I can print somewhat legibly with great effort, I still have a handwriting impairment and my scrawl looks very much like "brain-damaged" writing. I still remember in the early 1960s when I saw a variety of handwriting tutors and had to have my recess taken away for a brief time to find time to give me extra help in this area. I also had tutoring in perceptual motor skills designed to help these problems but to no avail. I have difficulty wrapping presents and other fine skilled movements. However, my ability to type is more than intact.
I wondered if this was part of my autism as I had read about Stephen Wiltshire, Temple Grandin and others with extraordinary fine motor skills. To this day, I have never met a person, autistic or otherwise, who has a "fine motor coordination problem" as I have. I had read that autistic persons generally score higher on the performance part of the Wechsler IQ test than on the verbal portion. With myself, the opposite is true, where there is about a 40 point discrepancy between my relatively high verbal IQ and low performance IQ. Some studies, such as the ones done by the Mottron group and Uta Frith as well as others, show that at least some autistics have superior ability in the block design test on the Wechsler performance. I score in the retarded range on this. So, I have wondered if there was a subtype of autism involving poor motor skills. It would appear, from this study, that I'm not the only one.
The authors of this study speculate that the brain processes that give rise to motor coordination and social skills are controlled by a common area. It's possible that the frontal lobes are a candidate as they mediate the mirror neuron areas which could be involved in social judgement. In a previous post I wrote about parallels in autism and frontotemporal dementia which included poor social skills. So, I have to wonder if this could be key to the etiology of my problems.
Some of the motor and perceptual impairments I have also exist in adult patients with lesions of the right hemisphere of the parietal lobes called constructional apraxia. However, I might not have this as Eric Courchesne pointed out to me that adult lesions and developmental lesions might have different etiologies. When their research group did an MRI scan on me, they found I had hypoplasia of lobules VI and VII of the cerebellar vermis as compared to a normal control. This could explain my good typing motor coordination. Perhaps if the cerebellar damage occurs early enough it won't affect some of the autistics motor performance. However, in light of this recent study, I wonder if the cerebellum could be involved. Though, I'm not sure if it is involved in social judgement.
What Courchesne told me may have been slightly contradicted in a study done in the 1970s by Ralph Maurer and Antonio Demasio showing parallels between autism and problems in adult neurology patients with frontal lobe and basal ganglia impairments.
The basal ganglia are other brain areas that are involved in motor performance.
The reticular formation is another. In 1964, Bernard Rimland speculated that this area may be involved in autism. I don't think there is any empirical evidence to back that up.
It was somewhat of a relief to read about this study, as it means I may not be as atypical an autistic as I thought. Knowing about motor impairments may someday give me a clue to the etiology of my problems. I await further research.
Friday, February 10, 2012
interesting parallels between FTD and autism
It was with interest that I read an article in today's L.A. times about frontotemporal dementia. The man described in the article had a variety of social judgment impairment problems. When he stood in line behind a tattooed woman he said loudly, "Wow, that's a lot of tattoos." He would wander into property with no trespassing signs. This condition, also called 'Pick's disease', is similar to Alzheimer's in that it is caused by the buildup of proteins in the frontal and temporal lobes of the brain resulting in the degeneration of neurons in these areas. Alzheimer's usually happens in the area of the hippocampus and surrounding areas where it affects memory. FTD happens in a different area of the brain, thusly producing different types of manifestations and symptoms.
Upon looking at yet another website. It appears that some other symptoms can be inability to speak, echolalia and lack of emotional warmth.
I can't help but seeing some of the parallels between this condition and autism. Of course, this may be superficial. Those who believe that mercury could be the cause of autism have tried to demonstrate that there are similarities between the symptoms of those two conditions. Others, such as Karin Nelson and Margaret Bauman, have disputed these showing there are differences as well.
I have to wonder if what is known about FTD could open the door into resolving the mysteries of the etiology of autism. I'm interested in knowing exactly what have caused the myriad of problems and disability that I've had in my life.
A variety of research has suggested that autism could be caused by problems in the frontal lobes of the brain, particularly the most recent autopsy study published by Courchesne, et. al. I wrote about this research and the relationship to my life about a few months ago. Also, the data from the mirror neuron research done by Marco Iacoboni, Mirella Depratto(sp?) and others have also suggested frontal lobe involvement. Based on other frontal lobe impairments this area of the brain could be considered a good candidate, as it is where Broca's area, which generates spontaneous speech is located. Also, the frontal lobes are responsible for executive functioning.
I think the temporal lobes have been implicated in the etiology also but I'm not as familiar with this area. I do remember the Kluver-Bucy syndrome in monkeys whose temporal lobes were removed and the social problems and aggression it caused.
A problem with this line of thinking is that developmental impairments may be different than adult impairments. I asked Eric Courchesne about this when I first met him back in 1989. At the time, their research showing the hypoplasia of lobules VI and VII of the cerebellar vermis was making news. If the cerebellum were responsible for the problems of autistics, I wondered why they would have intact motor systems much of the time. His answer was that if the damage occurred early enough, it would not affect the motor abilities of persons with autism. Developmental lesions were different than adult lesions.
I have a bad handwriting and fine motor coordination problems, but my ability to type and do other types of motor activities is intact. These problems are sort of similar to the constructional apraxias of adults that have had lesions in the right hemisphere of the parietal lobe. A cerebellar impairment would not explain my ability to type fast unless what Courchesne said about the differences between developmental and adult lesions were true.
After I read Marco Iacoboni's book, I contacted him and wondered why if mirror neurons were deficient in persons with autism, why didn't someone with Broca's aphasia from a stroke develop autistic-like behaviors. I wondered if it were because developmental lesions were different than adult lesions. He responded stating that this could possibly be the case and also that the frontal lobes were just one part of the mirror neuron system so this could be a reason as well.
My disability has made it too difficult for me to apply myself and study neuroscience as extensively as I want to. Even if it didn't, I guess no one really knows exactly what causes autism.
The article about the frontotemporal dementia in today's times was quite intriguing. I was interested in reading about Stuart Bryant's problems. There did seem to be some parallels with autism, though I suppose it may not provide a clue about my problems or what is wrong with myself.
Upon looking at yet another website. It appears that some other symptoms can be inability to speak, echolalia and lack of emotional warmth.
I can't help but seeing some of the parallels between this condition and autism. Of course, this may be superficial. Those who believe that mercury could be the cause of autism have tried to demonstrate that there are similarities between the symptoms of those two conditions. Others, such as Karin Nelson and Margaret Bauman, have disputed these showing there are differences as well.
I have to wonder if what is known about FTD could open the door into resolving the mysteries of the etiology of autism. I'm interested in knowing exactly what have caused the myriad of problems and disability that I've had in my life.
A variety of research has suggested that autism could be caused by problems in the frontal lobes of the brain, particularly the most recent autopsy study published by Courchesne, et. al. I wrote about this research and the relationship to my life about a few months ago. Also, the data from the mirror neuron research done by Marco Iacoboni, Mirella Depratto(sp?) and others have also suggested frontal lobe involvement. Based on other frontal lobe impairments this area of the brain could be considered a good candidate, as it is where Broca's area, which generates spontaneous speech is located. Also, the frontal lobes are responsible for executive functioning.
I think the temporal lobes have been implicated in the etiology also but I'm not as familiar with this area. I do remember the Kluver-Bucy syndrome in monkeys whose temporal lobes were removed and the social problems and aggression it caused.
A problem with this line of thinking is that developmental impairments may be different than adult impairments. I asked Eric Courchesne about this when I first met him back in 1989. At the time, their research showing the hypoplasia of lobules VI and VII of the cerebellar vermis was making news. If the cerebellum were responsible for the problems of autistics, I wondered why they would have intact motor systems much of the time. His answer was that if the damage occurred early enough, it would not affect the motor abilities of persons with autism. Developmental lesions were different than adult lesions.
I have a bad handwriting and fine motor coordination problems, but my ability to type and do other types of motor activities is intact. These problems are sort of similar to the constructional apraxias of adults that have had lesions in the right hemisphere of the parietal lobe. A cerebellar impairment would not explain my ability to type fast unless what Courchesne said about the differences between developmental and adult lesions were true.
After I read Marco Iacoboni's book, I contacted him and wondered why if mirror neurons were deficient in persons with autism, why didn't someone with Broca's aphasia from a stroke develop autistic-like behaviors. I wondered if it were because developmental lesions were different than adult lesions. He responded stating that this could possibly be the case and also that the frontal lobes were just one part of the mirror neuron system so this could be a reason as well.
My disability has made it too difficult for me to apply myself and study neuroscience as extensively as I want to. Even if it didn't, I guess no one really knows exactly what causes autism.
The article about the frontotemporal dementia in today's times was quite intriguing. I was interested in reading about Stuart Bryant's problems. There did seem to be some parallels with autism, though I suppose it may not provide a clue about my problems or what is wrong with myself.
Wednesday, February 1, 2012
Occupy neurodiversity: A younger generation autist comes up with a winner!
I'd like to give a shoutout to teenaged antineurodiversity blogger
Oliver Canby's latest post in which he draws an excellent analogy to the occupy wall street movement to demonstrate the problems that those of us who'd like a cure for our autism face.
Though I don't agree with all of Oliver's statements, particularly a call for violence if necessary, nor will I be contributing $500.00 to his cause or soliciting donations of my own, I believe this post deserves commentary.
For years some of the members of the neurodiversity movement have made the statement that most autistics don't want to be cured.
Wrong planet founder, Alex Plank has been at the head of the pack in this regard. He even has the motto "autism is good" on his website.
While I won't claim most autistics want to be cured or give an exact number of 99%, there are certainly a good many autistics who are not represented by neurodiversity. It is likely many of these who can't speak or head bang would like a cure.
Many persons on the spectrum are too low functioning or would not have the inclination to write a blog post trying to dispute neurodiversity. Many parents who are working hard, fighting for services and other help for their kids just don't have the time to blog and refute what the ND's say.
Many if not the majority of ND's are young college students or even younger teenagers who have time on their hands with very little responsibilities. They are not encumbered from being able to rant and rave and spread their evil message. So, though the numbers may not be exact, the analogy between the top 1% and bottom 99% rings true.
It is wrong for Alex Plank, Michael John Carley, Dawn Prince and others to speak on our behalf. They have no way of knowing what percent of autistics support neurodiversity and which don't. There is a good chance that a silent majority does believe autism is not a trivial condition and wish for a cure--including the majority of those on the spectrum themselves.
I have no job, can't get anything done during the day and have very little social interaction and I'm in the bottom 99%.
Though not easy, I'll do what I can to combat neurodiversity. Hopefully someday there will be a cure for autism or a way to prevent a child from becoming autistic. No, I'm not talking about abortion.
I hope the time will come when neurodiversity is exposed for the fringe movement that they are and the 99% of us whose impairments make it difficult to fight back will allow our message to be heard by the media.
Oliver Canby's latest post in which he draws an excellent analogy to the occupy wall street movement to demonstrate the problems that those of us who'd like a cure for our autism face.
Though I don't agree with all of Oliver's statements, particularly a call for violence if necessary, nor will I be contributing $500.00 to his cause or soliciting donations of my own, I believe this post deserves commentary.
For years some of the members of the neurodiversity movement have made the statement that most autistics don't want to be cured.
Wrong planet founder, Alex Plank has been at the head of the pack in this regard. He even has the motto "autism is good" on his website.
While I won't claim most autistics want to be cured or give an exact number of 99%, there are certainly a good many autistics who are not represented by neurodiversity. It is likely many of these who can't speak or head bang would like a cure.
Many persons on the spectrum are too low functioning or would not have the inclination to write a blog post trying to dispute neurodiversity. Many parents who are working hard, fighting for services and other help for their kids just don't have the time to blog and refute what the ND's say.
Many if not the majority of ND's are young college students or even younger teenagers who have time on their hands with very little responsibilities. They are not encumbered from being able to rant and rave and spread their evil message. So, though the numbers may not be exact, the analogy between the top 1% and bottom 99% rings true.
It is wrong for Alex Plank, Michael John Carley, Dawn Prince and others to speak on our behalf. They have no way of knowing what percent of autistics support neurodiversity and which don't. There is a good chance that a silent majority does believe autism is not a trivial condition and wish for a cure--including the majority of those on the spectrum themselves.
I have no job, can't get anything done during the day and have very little social interaction and I'm in the bottom 99%.
Though not easy, I'll do what I can to combat neurodiversity. Hopefully someday there will be a cure for autism or a way to prevent a child from becoming autistic. No, I'm not talking about abortion.
I hope the time will come when neurodiversity is exposed for the fringe movement that they are and the 99% of us whose impairments make it difficult to fight back will allow our message to be heard by the media.
Thursday, January 19, 2012
Will New DSM end the autism epidemic?
Fred Volkmar, director of the child study center at Yale University has made the very strong statement that changes in the new proposed DSM that are due to come out this December will result in the end of the autism epidemic.
The definitions of autism will become far more stringent, making getting a legitimate diagnosis more difficult. At least according to Volkmar and the people he's worked with who compiled the data and have presented it to a conference. This data is as yet unpublished. Autism researcher Catherine Lord has disputed Volkmar's contention, claiming his analysis in part is the result of antiquated data.
I wonder what are the implications of this. Will people requiring various services or who want to get on disability have a harder time doing so? Will the Age of Autism crowd who insists that some changes in the environment (such as vaccines or more exposures to mercury) have their arguments refuted and be proven wrong if Volkmar's insinuations that the so-called epidemic is an artifact are proven correct? Will the neurodiversity movement have a harder time trivializing this condition, claiming it's not so bad and claiming that perhaps as many of 30% of autistics are savants have a harder time making their argument? Will certain extremely high functioning individuals such as Valerie Paradiz or Deena Gassner who present at conferences and make money from autism have a more difficult time doing so? What of Laurent Mottron and Isabelle Souleries' research? Will they still be able to legitimately claim that all autistics have superior skills in certain areas? There are other questions one could ask, but you can get the drift.
Aside from knowing that Michael Carley will be unhappy that he will have to possibly be associated with head bangers and diaper wearers and may no longer be able to fancy himself an incarnation of Bill Gates or Albert Einstein, Gadfly wonders if Volkmar is correct and if this will really change anything.
My first impression is that the answer is no. Nothing will convince Mark Blaxill, Ginger Taylor, Kim Stagliano and others that their kids did not become autistic because of vaccines. This is apparent to me. They will claim that Volkmar is wrong. Neurodiversity will continue to insist that Jamie Gilbert is not disordered but is only differently wired, that if society were to accommodate him, he'd be able to communicate using an assistive device, he wouldn't engage in head banging. His mother would not need to make all of these drastic videos and post them on youtube. They will claim she is a bigot for not accepting her son the way he is. Like other mothers who long for a cure, she only rejects her son and teaches him to hate himself. If Jamie is unhappy about his head banging, inability to speak and compulsion to self-mutilate it is entirely his mother's fault ala Bettelheim. These vicious hatemongers will not change their color.
I was denied disability, based on the fact that I was able to work somewhat in spite of my limitations, My success was punished while others' sloth was rewarded. The use of assistive devices has apparently given the government an excuse to deny disability benefits to people. Any excuse will be used to deny disability regardless of the reported prevalence of autism.
Having met both Deena Gassner and Valerie Paradiz, it is beyond my comprehension how either of these two merit an autism diagnosis. Of course, I may not know everything about their lives. Both of them allege to have been diagnosed by certified clinicians. I must defer to the judgement of the clinicians and realize that individuals who can attain advanced degrees, get married, have children must have impairments that are not obvious to my untrained eye and somehow merit a diagnosis under the current DSM criteria. But what if the DSM changes? Will Gassner and Paradiz lose their respective diagnoses?
I believe the answer to that question can be obtained by looking at another extremely high functioning individual, John Elder Robison. Mr. Robison had written a best selling memoir based on being on the autism spectrum. When neurodiversity complained of no autistics having positions of power in autism speaks, AS used affirmative action and recruited Mr. Robison, someone who hadn't even completed the tenth grade in school, to sit in a room with M.D. and Ph.D. scientists and decide what research they should fund. Robison also gets to decide how tax dollars should be spent.
This is in spite of the fact that Robison has admitted to not being a disabled person by any means (his words). Though I am not completely familiar with the current DSM criteria, I find it hard to believe you don't have to have some sort of disability to qualify for a diagnosis. Yet, I must defer to Robison's psychologist friend who diagnosed him at age 40. Perhaps there is some explanation as to how a nondisabled person can be legitimately diagnosed with this condition according to current DSM criteria. So somehow I don't see changing the criteria would take Robison's diagnosis away.
Is Volkmar correct? Will this end the autism epidemic (alleged or otherwise)? Will this change anything at all. No, I don't think so.
The definitions of autism will become far more stringent, making getting a legitimate diagnosis more difficult. At least according to Volkmar and the people he's worked with who compiled the data and have presented it to a conference. This data is as yet unpublished. Autism researcher Catherine Lord has disputed Volkmar's contention, claiming his analysis in part is the result of antiquated data.
I wonder what are the implications of this. Will people requiring various services or who want to get on disability have a harder time doing so? Will the Age of Autism crowd who insists that some changes in the environment (such as vaccines or more exposures to mercury) have their arguments refuted and be proven wrong if Volkmar's insinuations that the so-called epidemic is an artifact are proven correct? Will the neurodiversity movement have a harder time trivializing this condition, claiming it's not so bad and claiming that perhaps as many of 30% of autistics are savants have a harder time making their argument? Will certain extremely high functioning individuals such as Valerie Paradiz or Deena Gassner who present at conferences and make money from autism have a more difficult time doing so? What of Laurent Mottron and Isabelle Souleries' research? Will they still be able to legitimately claim that all autistics have superior skills in certain areas? There are other questions one could ask, but you can get the drift.
Aside from knowing that Michael Carley will be unhappy that he will have to possibly be associated with head bangers and diaper wearers and may no longer be able to fancy himself an incarnation of Bill Gates or Albert Einstein, Gadfly wonders if Volkmar is correct and if this will really change anything.
My first impression is that the answer is no. Nothing will convince Mark Blaxill, Ginger Taylor, Kim Stagliano and others that their kids did not become autistic because of vaccines. This is apparent to me. They will claim that Volkmar is wrong. Neurodiversity will continue to insist that Jamie Gilbert is not disordered but is only differently wired, that if society were to accommodate him, he'd be able to communicate using an assistive device, he wouldn't engage in head banging. His mother would not need to make all of these drastic videos and post them on youtube. They will claim she is a bigot for not accepting her son the way he is. Like other mothers who long for a cure, she only rejects her son and teaches him to hate himself. If Jamie is unhappy about his head banging, inability to speak and compulsion to self-mutilate it is entirely his mother's fault ala Bettelheim. These vicious hatemongers will not change their color.
I was denied disability, based on the fact that I was able to work somewhat in spite of my limitations, My success was punished while others' sloth was rewarded. The use of assistive devices has apparently given the government an excuse to deny disability benefits to people. Any excuse will be used to deny disability regardless of the reported prevalence of autism.
Having met both Deena Gassner and Valerie Paradiz, it is beyond my comprehension how either of these two merit an autism diagnosis. Of course, I may not know everything about their lives. Both of them allege to have been diagnosed by certified clinicians. I must defer to the judgement of the clinicians and realize that individuals who can attain advanced degrees, get married, have children must have impairments that are not obvious to my untrained eye and somehow merit a diagnosis under the current DSM criteria. But what if the DSM changes? Will Gassner and Paradiz lose their respective diagnoses?
I believe the answer to that question can be obtained by looking at another extremely high functioning individual, John Elder Robison. Mr. Robison had written a best selling memoir based on being on the autism spectrum. When neurodiversity complained of no autistics having positions of power in autism speaks, AS used affirmative action and recruited Mr. Robison, someone who hadn't even completed the tenth grade in school, to sit in a room with M.D. and Ph.D. scientists and decide what research they should fund. Robison also gets to decide how tax dollars should be spent.
This is in spite of the fact that Robison has admitted to not being a disabled person by any means (his words). Though I am not completely familiar with the current DSM criteria, I find it hard to believe you don't have to have some sort of disability to qualify for a diagnosis. Yet, I must defer to Robison's psychologist friend who diagnosed him at age 40. Perhaps there is some explanation as to how a nondisabled person can be legitimately diagnosed with this condition according to current DSM criteria. So somehow I don't see changing the criteria would take Robison's diagnosis away.
Is Volkmar correct? Will this end the autism epidemic (alleged or otherwise)? Will this change anything at all. No, I don't think so.
Monday, January 2, 2012
More media attention to autistic adults in the future?
I'm gratified to see Susan Senator and The age of autism are bringing attention to the problems of autism in adulthood which are largely ignored by the media. I wrote about this several years ago.
One of the likely reasons for the dearth of coverage of adult autism is the reluctance to acknowledge the poor prognosis that most with this condition will have once they reach the milestone of their twenty-second birthday. This is the time when autistics age out of the special education system and can no longer get certain services.
Ivar Lovaas' landmark study claimed that approximately half of the children in the treatment group achieved complete normalcy. These children were followed up in adolescence and had maintained their gains. However, Lovaas in his lifetime never published adult outcomes of these children though the oldest are now in their forties. We don't know what became of these children and how they fared later in life.
Other pie-in-the-sky promises are made for autistics with social skills training, speech therapy and other services. The insurance mandates being passed in so many states that autism speaks lobbied for is attempting to fulfil these promises. AS even went so far as to claim these services would make the difference between kids having friends and not having friends.
Ms. Senator, who wrote a book ironically entitled "Making Peace With Autism", now seems to have some trouble making peace with the fact that her son has aged out of this system and the obstacles she now faces as his mother. In spite of the fact that her son received multiple services under IDEA, he has not done well as an adult and Ms. Senator was compelled to put him in a home at age seventeen. Will others on the spectrum do as poorly or better than her son? Time will tell.
Another reason is that not as many adults have been diagnosed as children. Some believe that this is because there were huge increases in autism that started in the 1980s and then took off in the 1990s. Others believe that autism is a much more popular diagnosis because it enables disabled children to get services and cultural shifts in thinking. This debate will probably never be resolved as doing prevalence studies in adults analogous to the ones done on children will never happen. One must remember the analogy about looking for a needle in a haystack. The reason the CDC was able to get nearly 1% prevalence figures in children was because they presented to special education services and such; this does not happen with adults. The Brugha study done in England attempted to address this problem, but likely had a variety of methodological flaws which makes it claims of finding a 1% prevalence in adults dubious.
Now that the year is 2012 and the population of the birth cohorts in which a diagnosis was more common are coming of age. So we're going to see more problems that autistics face in adulthood come to the fore. Ari Ne'eman's no myths video will be shown to be a myth itself. Ne'eman and others like him won't be able to get away with painting a false rosy picture of autistics doing just fine in maturity.
Perhaps this is the start of something new. Adults with autism won't be so invisible anymore. We will no longer regard autistics as Peter Pans who won't grow up. With this new publicity we'll be able to assess how really effective ABA and the IDEA law have been. I realize the insurance mandates are something new. The powers that be may use that as an excuse claim that all hope should not be abandoned.
In the meantime, I hope that Senator's piece as well as the age of autism's coverage will generate even more publicity. Perhaps it's high time those of us who suffer from autism in adulthood get the coverage we deserve.
One of the likely reasons for the dearth of coverage of adult autism is the reluctance to acknowledge the poor prognosis that most with this condition will have once they reach the milestone of their twenty-second birthday. This is the time when autistics age out of the special education system and can no longer get certain services.
Ivar Lovaas' landmark study claimed that approximately half of the children in the treatment group achieved complete normalcy. These children were followed up in adolescence and had maintained their gains. However, Lovaas in his lifetime never published adult outcomes of these children though the oldest are now in their forties. We don't know what became of these children and how they fared later in life.
Other pie-in-the-sky promises are made for autistics with social skills training, speech therapy and other services. The insurance mandates being passed in so many states that autism speaks lobbied for is attempting to fulfil these promises. AS even went so far as to claim these services would make the difference between kids having friends and not having friends.
Ms. Senator, who wrote a book ironically entitled "Making Peace With Autism", now seems to have some trouble making peace with the fact that her son has aged out of this system and the obstacles she now faces as his mother. In spite of the fact that her son received multiple services under IDEA, he has not done well as an adult and Ms. Senator was compelled to put him in a home at age seventeen. Will others on the spectrum do as poorly or better than her son? Time will tell.
Another reason is that not as many adults have been diagnosed as children. Some believe that this is because there were huge increases in autism that started in the 1980s and then took off in the 1990s. Others believe that autism is a much more popular diagnosis because it enables disabled children to get services and cultural shifts in thinking. This debate will probably never be resolved as doing prevalence studies in adults analogous to the ones done on children will never happen. One must remember the analogy about looking for a needle in a haystack. The reason the CDC was able to get nearly 1% prevalence figures in children was because they presented to special education services and such; this does not happen with adults. The Brugha study done in England attempted to address this problem, but likely had a variety of methodological flaws which makes it claims of finding a 1% prevalence in adults dubious.
Now that the year is 2012 and the population of the birth cohorts in which a diagnosis was more common are coming of age. So we're going to see more problems that autistics face in adulthood come to the fore. Ari Ne'eman's no myths video will be shown to be a myth itself. Ne'eman and others like him won't be able to get away with painting a false rosy picture of autistics doing just fine in maturity.
Perhaps this is the start of something new. Adults with autism won't be so invisible anymore. We will no longer regard autistics as Peter Pans who won't grow up. With this new publicity we'll be able to assess how really effective ABA and the IDEA law have been. I realize the insurance mandates are something new. The powers that be may use that as an excuse claim that all hope should not be abandoned.
In the meantime, I hope that Senator's piece as well as the age of autism's coverage will generate even more publicity. Perhaps it's high time those of us who suffer from autism in adulthood get the coverage we deserve.
Monday, December 12, 2011
Amazingly LBRB's Sullivan actually gets something right
One of the most well-known and widely read autism blogs is Kevin Leitch's creation ,Left Brain/Right Brain. For good reason, I've sometimes referred to them as Left Brain/Right Brain/No Brain. The blog's main author, Matt Carey (AKA "Sullivan"), appears to have a track record for not doing his homework and getting things wrong. As has been seen in the past, "Sullivan" has gotten his facts wrong about special education. When autism's Gadfly exposed Ari Ne'eman for being less than truthful when he claimed that he never said that autism was not a disability Sully made some pathetic attempts at damage control along with factual errors. He also made numerous factual errors about a Newsweek article that featured Ne'eman and the proactive stance against this article that was undertaken by a number of persons who wish to cure autism and don't believe in neurodiverse bull.
Well I'm happy to report actually for once he got something right. Ari and the autistic self advocacy network are apparently requesting that person's with autism be reviewers for federal research grants. They apparently only want people who have their warped ideology:
As a result, we’re issuing a call for resumes from Autistic adults and other people with disabilities who believe in the civil rights/social model approach to disability and want to ensure that self-advocates are represented in grantmaking. Please include any areas of expertise within your resume.
You can note the bolded part which is certainly bigoted and discriminatory. Apparently I don't qualify because I don't agree with ASAN's belief in the social model of disability. They only want people with their own warped ideology and not everyone's perspective.
Aside from this Gadfly wonders why it is necessary to have autistic reviewers and what this accomplishes. Steven Jobs was a very intelligent and talented individual who made great technological contributions to society, yet he was never appointed to a board that reviewed research grants to study cancer. I doubt that just because a person gets an infection that there is a call for them to be research reviewers on antibiotics.
Yet, in the world of autism this does not appear to be the case. Stephen Shore, a man with extremely mild autism, has been a reviewer of federal grants in the past. Though he has a doctorate in education, he has no formal background in science and has limited knowledge of the scientific issues of autism. Even worse, John Robison, a man whose claims to having autism are dubious, at least to me, has also been a reviewer of federal research grants. Robison, dropped out of school in the tenth grade, yet gets to review grants along with M.D.s and Ph.Ds. He has admitted that he is not a disabled person, so Gadfly wonders why he even qualifies for a diagnosis.
In light of this, I was pleasantly surprised to see this comment from "Sullivan":
Well I'm happy to report actually for once he got something right. Ari and the autistic self advocacy network are apparently requesting that person's with autism be reviewers for federal research grants. They apparently only want people who have their warped ideology:
As a result, we’re issuing a call for resumes from Autistic adults and other people with disabilities who believe in the civil rights/social model approach to disability and want to ensure that self-advocates are represented in grantmaking. Please include any areas of expertise within your resume.
You can note the bolded part which is certainly bigoted and discriminatory. Apparently I don't qualify because I don't agree with ASAN's belief in the social model of disability. They only want people with their own warped ideology and not everyone's perspective.
Aside from this Gadfly wonders why it is necessary to have autistic reviewers and what this accomplishes. Steven Jobs was a very intelligent and talented individual who made great technological contributions to society, yet he was never appointed to a board that reviewed research grants to study cancer. I doubt that just because a person gets an infection that there is a call for them to be research reviewers on antibiotics.
Yet, in the world of autism this does not appear to be the case. Stephen Shore, a man with extremely mild autism, has been a reviewer of federal grants in the past. Though he has a doctorate in education, he has no formal background in science and has limited knowledge of the scientific issues of autism. Even worse, John Robison, a man whose claims to having autism are dubious, at least to me, has also been a reviewer of federal research grants. Robison, dropped out of school in the tenth grade, yet gets to review grants along with M.D.s and Ph.Ds. He has admitted that he is not a disabled person, so Gadfly wonders why he even qualifies for a diagnosis.
In light of this, I was pleasantly surprised to see this comment from "Sullivan":
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I applaud ASAN for actively working to pull autistics into the research grant approvals. But, I am very curious as to how people respond to this sentence:
“As a result, we’re issuing a call for resumes from Autistic adults and other people with disabilities who believe in the civil rights/social model approach to disability and want to ensure that self-advocates are represented in grantmaking. ”
This is a place where I think ASAN tripped up. “...who believe in the civil rights/social model approach to disability…” shouldn’t be there.
Autistics of various beliefs should be recruited and represented
Thanks Sullivan for finally getting something right, and for having the tolerance, unlike ASAN, to be willing to go to bat for people who have beliefs that don't necessarily agree with yours. You are curious as to how people will respond, this is my response.
However, perfect records are indeed rare, and in a sense it is regrettable that yours for not getting it right is no longer intact.