I was interested to recently read about research that the media is implying could lead the way to finding drugs that can reverse or maybe cure autism.The above-linked article states that genetic mutations for certain proteins called neuroligins can cause autism. These are proteins that are necessary for synaptic transmission between neurons, or, to put it more simply, communication between brain cells. If this communication is disrupted, various problems could result. These might be described as autism.
The researchers inserted so-called "knock in" mutated genes in mice that lead to various motor impairments and lack of social behavior which could be considered an animal model for autism. They also used "knock out" mice (mice who have had the gene for neuroligin-3 knocked out) as well. The brains had abnormal synaptic connections and an excessive number of glutamate (a neurotransmitter-substance that communicates between brain cells) receptor
What was most interesting is that when the researchers inserted neuroligin proteins in the brain, they were able to reverse this process and the brains of the mice normalized and their autistic symptoms disappeared. Roche pharmaceuticals, who apparently hopes to develop a drug to conquer autism, collaborated with these researchers in Switzerland.
Intrigued by this research, I emailed Peter Scheiffele, one of the authors of this study, asking him to send me a .pdf file. Dr. Scheiffele kindly sent me a copy of his study.
My lack of training as a scientist limited my understanding of the paper, but I believe I got the gist of it. Though it might hold promise for some persons with autism at some point, it seems to me the media may be hyping this study prematurely.
Various genes have been implicated in autism. Most cases of autism are probably polygenetic, i.e. involving interactions of several genes rather than just one. Also, environmental factors may contribute as well, interacting with the genes. The neuroligin mutation is just a single genetic mutation existing on the X chromosome and not on any of the other chromosomes. Genes on autosomes (the non sex chromosomes) have been found to be implicated in autism, so the neuroligin mutations are probably just a small percentage of possible casual factors for autism. Also, the authors only studied the neuroligin-3 protein (NL3). neuroligin-4 (NL4) has also been implicated in autism. There may be a number of X chromosome linked( including Fragile X) etiologies for autism. Females have two X chromosomes and males have one (their second sex chromosome is the Y chromosome) so this may be one of the reasons there's a 4:1 ratio of male autistics to females. If all autisms were caused by an X-linked mutation, it's likely the ratio of males to females would be much higher or autistic females would be nonexistent. Hemophilia and pattern baldness are examples of x-linked genetic conditions that are probably nearly non-existent in females. So, it is unlikely this research could be applied to all forms of autism.
The authors stated that in their mice models synaptic transmission was altered in in somatosensory cortex and hippocampus. They went on to say that the subcellular localization in living creatures of the NL3 protein was unknown.
For reasons not entirely clear to me, they only focused on the cerebellum and not on any other areas of the brain. Their rationale was that this was because one study had shown cerebellar activation was altered in autistic individuals and cerebellar lesions in animal models resulted in changes reminiscent of autism. This is in spite of the fact that other areas of the brain, i.e. the frontal lobes and limbic system (including the amygdala) have also been implicated in autism.
Whether or not these mice who normally are incapable of speaking and modeling language, fine motor and other possible symptoms of autism are a valid animal model is questionable to me.
In addition to finding glutamatergic synapses altered, they also found GABAergic synapses were altered. GABA (along with norepinephrine) is one of the neurotransmitters that are used in cerebellar purkinje cells, which have been implicated in some autopsies of postmortem autistic brains (granular cells not being found to be as affected if I'm remembering correctly). Interestingly, GABA is the neurotransmitter implicated in the lack of inhibition that Dr. Manuel Casanova has found in his work showing abnormal minicolumns in the postmortem brains of some autistic adults.
They also found increased synaptic connections in the wiring of the cerebellar network.
The rats were tested in a climbing ladder task and the mice with the NLG knock out mice were impaired.
As mentioned before, the next phase of the experiment was to reinsert the neuroligin proteins into the mice brains. These mice's brains were apparently restored to their normal synaptic functioning levels and the excess synapses were pruned. Whether this can ever be used as a legitimate autism treatment or prevention I don't know.
What was noteworthy was that the abnormal synaptic pathophysiology of the NLG affected mice paralleled what has been found in fragile x mice and a mutation called Tsc2 which I'd never heard of.
At the end of the article the authors implied this research showed that the structural differences in the brains of persons with autism could be reversed after the brain has completely developed.
I tried my best to give a take on this study with my limited education and knowledge, I apologize in advance for whatever factual errors or other problems there might be in this post; however, I do have an intense interest in this research, though perhaps a lack of ability to fully grasp it.
I can't help hoping that research like this might someday be used to treat, prevent and even perhaps cure autism at some point in time, but I can't help thinking the ballyhoo of this study is just more media hype.
Addendum: I've now downloaded the FTP program I'd used in the past on Windows XP on Windows 7 and figured out how to use it. I uploaded the .pdf of the paper to my stories website and tried to link to it on this post. However, it did not seem to load for some reason, not sure why. I'll see if I can provide a link to the paper at some point.
Wednesday, September 19, 2012
Friday, September 7, 2012
genuine lawsuit or more neurodiverse mischief?
I was interested to read a post on the well known neurodiversity blog, left brain/right brain. This post discusses a certain lawsuit against a certain antineurodiversity blogger from New Hampshire. Those who have followed both the pro and anti neurodiversity blogs over the years can mostly likely surmise who this person is.
The individual in question is allegedly being sued for a post he wrote over a year ago. He stated that the organization now suing him was peddling "horseshit" and he called them "Jackasses". It seems strange that an organization, based on what it must cost to sue someone, would litigate for such a trivial reason and wait a year to file a suit. They allegedly stated that this blogger's post had a detrimental effect on their business, which seems far fetched, at least to me. Seems unlikely this suit would go very far, though I admit i'm not a lawyer or legal expert. LB/RB's blogger-in-chief, Matt Carey stated that he was conflicted about the lawsuit, but did not come right out and say how frivolous it was. There was also a dig at the unpopular (from the point of view of ND) blogger that had no relevance to the topic in question.
In a post written two days ago the blogger in question stated that he had not yet been served with the suit. I wonder what the probability is that someone would write on the internet that they were suing someone before a subpoena was handed down. This, to me, makes it very suspect.
Though Carey stated he was conflicted, some of the regulars of his blog seemed to have a celebratory attitude, including one of ND's most unsavory characters who has spent time harassing me and writing libelous things about your humble blogger on the internet (now deleted into the phantom zone).
I still remember Zach Lassiter's bogus story about autism speaks trying to put his t-shirt company out of business and Alex Plank, writing it up on the front page of wrong planet without doing any fact checking. Plank ironically enough solicited and received donations for his Autism Talk TV project from AS.
I also remember how the neurodiversity movement lied about this blogger claiming that he threatened Ari Ne'eman with death when all he did was write an inflammatory post stating that he wished ari ne'eman could be tried criminally and executed and asked Newsweek to "Kill Ari Ne'eman" referring to killing a favorable article they wrote about him.
I have to wonder if this is a real lawsuit or if this isn't just more lies and mischief from the neurodiversity movement who are just making the story up and posting it on the internet to stir trouble.
The blogger in question stated that he would provide updates, so I guess I'll just have to repeat the old cliche, "time will tell'.
Addendum: The latest news is that the lawsuit appears to be real although the blogger in question has not yet been served. Although he does not believe he's done anything wrong, he's offered to settle the suit in order to avoid the trouble or hassle or costs or all of the above that defending the suit would incur. Gadfly suspects neurodiversity will have a field day with this and will use this to claim proof of his guilt and mislead people who don't understand about settling to the avoid costs of litigation or other problems when fighting a trivial lawsuit. I guess there will be more on this topic and I will add to it when and if appropriate.
The individual in question is allegedly being sued for a post he wrote over a year ago. He stated that the organization now suing him was peddling "horseshit" and he called them "Jackasses". It seems strange that an organization, based on what it must cost to sue someone, would litigate for such a trivial reason and wait a year to file a suit. They allegedly stated that this blogger's post had a detrimental effect on their business, which seems far fetched, at least to me. Seems unlikely this suit would go very far, though I admit i'm not a lawyer or legal expert. LB/RB's blogger-in-chief, Matt Carey stated that he was conflicted about the lawsuit, but did not come right out and say how frivolous it was. There was also a dig at the unpopular (from the point of view of ND) blogger that had no relevance to the topic in question.
In a post written two days ago the blogger in question stated that he had not yet been served with the suit. I wonder what the probability is that someone would write on the internet that they were suing someone before a subpoena was handed down. This, to me, makes it very suspect.
Though Carey stated he was conflicted, some of the regulars of his blog seemed to have a celebratory attitude, including one of ND's most unsavory characters who has spent time harassing me and writing libelous things about your humble blogger on the internet (now deleted into the phantom zone).
I still remember Zach Lassiter's bogus story about autism speaks trying to put his t-shirt company out of business and Alex Plank, writing it up on the front page of wrong planet without doing any fact checking. Plank ironically enough solicited and received donations for his Autism Talk TV project from AS.
I also remember how the neurodiversity movement lied about this blogger claiming that he threatened Ari Ne'eman with death when all he did was write an inflammatory post stating that he wished ari ne'eman could be tried criminally and executed and asked Newsweek to "Kill Ari Ne'eman" referring to killing a favorable article they wrote about him.
I have to wonder if this is a real lawsuit or if this isn't just more lies and mischief from the neurodiversity movement who are just making the story up and posting it on the internet to stir trouble.
The blogger in question stated that he would provide updates, so I guess I'll just have to repeat the old cliche, "time will tell'.
Addendum: The latest news is that the lawsuit appears to be real although the blogger in question has not yet been served. Although he does not believe he's done anything wrong, he's offered to settle the suit in order to avoid the trouble or hassle or costs or all of the above that defending the suit would incur. Gadfly suspects neurodiversity will have a field day with this and will use this to claim proof of his guilt and mislead people who don't understand about settling to the avoid costs of litigation or other problems when fighting a trivial lawsuit. I guess there will be more on this topic and I will add to it when and if appropriate.
Tuesday, August 28, 2012
Do Jobs programs for autistic adults work?
Recently, autism specialist Julie Lounds Taylor studied the question of whether or not programs to help adults with autism find and keep jobs are indeed effective.
The full study is available online for anyone who cares to read it.
Essentially what she and her coauthors did was to comb the literature looking for published studies demonstrating outcomes of autistic adults who were in various job placement and/or training programs. It would appear that a number of these were on the more severe end and not as high functioning as someone like myself and others who might have trouble in the workplace, as they were in supported employment programs.
They found five studies that showed promising results for those on the spectrum enrolled in these programs. One problem was that all but one were in countries outside the U.S.A. So their relevance for those of us in America may be questionable.
The studies were deemed to be of poor quality for a variety of reasons: No long term follow-up. Lack of random assignment of autistics who took part in the program versus the controls, and in one study involving supported employment no control group.
There was no proof that these programs were not effective, only that the empirical evidence in the studies evaluating them was weak.
As I've written in previous posts, I am skeptical that there are any quick fix solutions to helping those on the spectrum find and keep jobs. I'm at the milder end and after many years of struggle, I finally had to capitulate and retire at the relatively young age of 51.
I've previously written about my bad experiences with voc rehab. I've also written about ASTEP, run by neurodiversity rogue Michael John Carley who has stated in his book, Aspergers from the inside out, that no autistics want to be cured and did not even bother to consult me.
Last but not least, I've written about autism speaks' hypocrisy in claiming to have an interest in helping us, yet never having employed a person on the spectrum in their organization.
I applaud Dr. Lounds Taylor for taking an interest in this topic and publishing this study. It seems no one else really cares about helping us.
The full study is available online for anyone who cares to read it.
Essentially what she and her coauthors did was to comb the literature looking for published studies demonstrating outcomes of autistic adults who were in various job placement and/or training programs. It would appear that a number of these were on the more severe end and not as high functioning as someone like myself and others who might have trouble in the workplace, as they were in supported employment programs.
They found five studies that showed promising results for those on the spectrum enrolled in these programs. One problem was that all but one were in countries outside the U.S.A. So their relevance for those of us in America may be questionable.
The studies were deemed to be of poor quality for a variety of reasons: No long term follow-up. Lack of random assignment of autistics who took part in the program versus the controls, and in one study involving supported employment no control group.
There was no proof that these programs were not effective, only that the empirical evidence in the studies evaluating them was weak.
As I've written in previous posts, I am skeptical that there are any quick fix solutions to helping those on the spectrum find and keep jobs. I'm at the milder end and after many years of struggle, I finally had to capitulate and retire at the relatively young age of 51.
I've previously written about my bad experiences with voc rehab. I've also written about ASTEP, run by neurodiversity rogue Michael John Carley who has stated in his book, Aspergers from the inside out, that no autistics want to be cured and did not even bother to consult me.
Last but not least, I've written about autism speaks' hypocrisy in claiming to have an interest in helping us, yet never having employed a person on the spectrum in their organization.
I applaud Dr. Lounds Taylor for taking an interest in this topic and publishing this study. It seems no one else really cares about helping us.
Tuesday, August 21, 2012
"Sullivan's" odd views on neurodiversity, respect, human rights and dignity
I see that the well-known pro-neurodiversity blogger, Matt Carey (AKA "Sullivan"), is at it again trotting out an abstract of a paper which I doubt he's even bothered to read to bolster the strawman argument he repeatedly makes that those of us who oppose neurodiversity are opposed to dignity and human rights for persons with autism.
The paper deals with the views of those with intellectual and developmental disabilities who want dignity and respect in research that involves them. Though the abstract of the article does not mention either autism nor neurodiversity, Carey vis-a-vis some sort of possibly convoluted logic which I'm not nearly sophisticated enough to understand ties this publication into one of his pet topics, i.e. neurodiversity equals respect and dignity and human rights.
We can see from wikipedia's definition that they give a different meaning from Carey: Neurodiversity is a "controversial concept [that] ... regards atypical neurological development as a normal human difference"
Carey states:
Call it “human rights and dignity” and it isn’t a controversial concept. It may not be always followed but it isn’t controversial. Call it “neurodiversity” and somehow it’s a big deal.
Mr. Carey, I realize a prestigious blogger and public member of the IACC probably won't take the time to read my piddling gadfly blog. However, I wonder how you can equate claiming that the atypical neurologic development is not an impairment, but rather a human normal difference to dignity and respect?
Also, the on-line behavior of those involved in neurodiversity seems to involve denying anyone with an autism spectrum disorder or possibly other neurologic or psychiatric impairment a cure if one is available and they so desire one. The motto of Kevin Leitch who created the autism hub and in fact is Mr. Carey's predecessor as the main author of the blog that Carey now writes for was "We don't need no stinkin' cure". Well, in response, I say, "We don't need no stinkin' neurodiversity." That is not about human or civil rights. I want a cure for autism. I believe that autism is a disability, defect and disease and not a normal human difference or variation. Does this mean I am opposed to civil rights for others or dignity or respect as both Michelle Dawson and Mr. Carey have stated? Not at all. I am all for human rights, dignity and respect. Can the same thing be said of neurodiversity proponents? Continue reading this post for the answer to that.
He also states that people are mistaken that neurodiversity is a concept only involving high functioning autism and they are mistaken about his son's functioning level. I don't know how high-functioning Carey's son is, yet I've never heard any pro-neurodiversity arguments from someone on the spectrum who was not high functioning. In fact, it would appear the majority of them are far higher functioning than anyone else who has autism. They can marry, have children, have good jobs, go to graduate school and pursue ph.d's, etc. I would be curious if Mr. Carey's son/daughter holds the same point of view as he does or if Carey has even inquired. If his offspring is too low functioning to understand or answer, then I don't understand how Carey can speak for him.
How about dignity and respect? What of the ND who emailed brain researcher Matthew Belmonte calling him a nazi? What about those who have called me Goebels, Mitchell-shite, and have written libelous posts about me and spent time harassing me. What of one ND who stated that parents of children don't give a fuck about their autistic kids and wish they would drop dead. What of your fellow IACC public member Noah Britton who has equated parents who wish a cure for their autistic children and support autism speaks with members of the Ku Klux Klan? Do proponents of the neurodiversity movement treat people with dignity and respect? No, I don't think so.
No, Mr. Carey, human rights and dignity are not controversial topics. I don't see how you or anyone else can deny whether or not autism is a disability and a disease or whether or not it's a normal human variation isn't a controversial opinion. I don't comprehend how stating that persons who can't speak, can't dress themselves, let alone work and who engage in self-injurious behavior should not only be denied a cure if one were available, but also be labeled racists if their parents desire a cure for them is not controversial. Again, Mr. Carey, your convoluted logic is way too sophisticated for me to follow.
The fact this individual is a member of a publicly funded body that gives recommendations to the federal govermnent regarding autism policy concerns me deeply.
The paper deals with the views of those with intellectual and developmental disabilities who want dignity and respect in research that involves them. Though the abstract of the article does not mention either autism nor neurodiversity, Carey vis-a-vis some sort of possibly convoluted logic which I'm not nearly sophisticated enough to understand ties this publication into one of his pet topics, i.e. neurodiversity equals respect and dignity and human rights.
We can see from wikipedia's definition that they give a different meaning from Carey: Neurodiversity is a "controversial concept [that] ... regards atypical neurological development as a normal human difference"
Carey states:
Call it “human rights and dignity” and it isn’t a controversial concept. It may not be always followed but it isn’t controversial. Call it “neurodiversity” and somehow it’s a big deal.
Mr. Carey, I realize a prestigious blogger and public member of the IACC probably won't take the time to read my piddling gadfly blog. However, I wonder how you can equate claiming that the atypical neurologic development is not an impairment, but rather a human normal difference to dignity and respect?
Also, the on-line behavior of those involved in neurodiversity seems to involve denying anyone with an autism spectrum disorder or possibly other neurologic or psychiatric impairment a cure if one is available and they so desire one. The motto of Kevin Leitch who created the autism hub and in fact is Mr. Carey's predecessor as the main author of the blog that Carey now writes for was "We don't need no stinkin' cure". Well, in response, I say, "We don't need no stinkin' neurodiversity." That is not about human or civil rights. I want a cure for autism. I believe that autism is a disability, defect and disease and not a normal human difference or variation. Does this mean I am opposed to civil rights for others or dignity or respect as both Michelle Dawson and Mr. Carey have stated? Not at all. I am all for human rights, dignity and respect. Can the same thing be said of neurodiversity proponents? Continue reading this post for the answer to that.
He also states that people are mistaken that neurodiversity is a concept only involving high functioning autism and they are mistaken about his son's functioning level. I don't know how high-functioning Carey's son is, yet I've never heard any pro-neurodiversity arguments from someone on the spectrum who was not high functioning. In fact, it would appear the majority of them are far higher functioning than anyone else who has autism. They can marry, have children, have good jobs, go to graduate school and pursue ph.d's, etc. I would be curious if Mr. Carey's son/daughter holds the same point of view as he does or if Carey has even inquired. If his offspring is too low functioning to understand or answer, then I don't understand how Carey can speak for him.
How about dignity and respect? What of the ND who emailed brain researcher Matthew Belmonte calling him a nazi? What about those who have called me Goebels, Mitchell-shite, and have written libelous posts about me and spent time harassing me. What of one ND who stated that parents of children don't give a fuck about their autistic kids and wish they would drop dead. What of your fellow IACC public member Noah Britton who has equated parents who wish a cure for their autistic children and support autism speaks with members of the Ku Klux Klan? Do proponents of the neurodiversity movement treat people with dignity and respect? No, I don't think so.
No, Mr. Carey, human rights and dignity are not controversial topics. I don't see how you or anyone else can deny whether or not autism is a disability and a disease or whether or not it's a normal human variation isn't a controversial opinion. I don't comprehend how stating that persons who can't speak, can't dress themselves, let alone work and who engage in self-injurious behavior should not only be denied a cure if one were available, but also be labeled racists if their parents desire a cure for them is not controversial. Again, Mr. Carey, your convoluted logic is way too sophisticated for me to follow.
The fact this individual is a member of a publicly funded body that gives recommendations to the federal govermnent regarding autism policy concerns me deeply.
Friday, August 3, 2012
Autism Speaks' hypocrisy in workplace problems II
As regular readers of autism's gadfly may remember, a few years ago I wrote a post regarding the fact that autism speaks would boast about how important it was to give autistic people job opportunities and showing videos of person's with autism in various jobs. This was in spite of the fact that to the best of my knowledge they have never had any paid employees in their organization whatsoever. Not even a minimum wage janitor or file clerk assisted by a job coach and accommodated for. I realize they have this person, Kerry Magroo, (sp?) who blogs for them occasionally who is referred to as "a staffer". It is unclear whether this individual is a paid employee of AS or not. It seems that AS is at it again with their nonstop demagoguery. They've even recycled giving PR to the jobs for autistics which they had nothing to do with the creation of which I wrote about in hypocrisy I. They've now publicized some department of labor grants to help train disabled people for jobs that they had nothing to do with. This is for all disabilities and not just autism. So I have to wonder if autistic people don't have it worse than other disabilities due to the poor social skills which make them less employable. Legally, these are not accommodable under ADA as I've written in recent previous posts.
In yet another PSA, AS bandies about statistics about how grave the problem is. They cite that nine out of ten autistics is not employed regardless of IQ or functioning level. I myself am not currently in the top 10%. They also project that 500,000 autistic children will become adults in the next decade. AS neglects to cite any source for these figures and where they come from I have no idea.
AS also states:
A comprehensive Employment Tool Kit is in development to help adults with autism find and keep a job in the current competitive labor market, as well as help employers recognize the abilities and strengths of individuals with autism.
I'd be interested in exactly what this comprises of and who developed it and how they can possibly help autistic people find and keep jobs, particularly in a bad economy. I'm also curious as to whether or not these alleged strengths and abilities of autistic people is based on the research of Laurent Mottron to whom autism speaks awarded a nearly half million dollar grant. Dr. Mottron has written that autistic people are assigned menial tasks in jobs when they are capable of much better, but offers no evidence for this allegation. He apparently bases this on the abilities of autistic people to find embedded figures and superior memory and musical pitch abilities or their superior scores on the Raven's matrices versus the Wechsler.
Another project AS is engaged in is an employment think tank. These individuals seem to have about as much ability to think and common sense as the authors of that ironically named neurodiversity blog, The Thinking Person's guide to autism. They cite Specialisterne, the company in Denmark which exclusively employs ASD software testers. A google search has shown a variety of articles alleging that Specialisterne only stayed in business because of generous subsides from the Danish government, though I have not been able to find a definitive source. Founder, Thorkil Sonne, in one interview did deny his company received government subsidies. So it's unclear how well this model could work in a less socialist country such as the U.S. Another company in Illinois, Aspiritech, has a similar approach to Specialisterne but is apparently subsidized by grants and as far as I know has yet to turn a profit.
One of the most dubious considerations (at least to me) is that somehow neurotypical co-workers can be trained to work with autistic employees. AS is dreaming if they think that's going to happen. If they're so sure of this, then I am curious why they don't implement this strategy in their own organization.
Once again, I wish that Autism Speaks would either start employing autistic people in their organization or stop spreading propaganda and demagoguery that they don't really believe in.
In yet another PSA, AS bandies about statistics about how grave the problem is. They cite that nine out of ten autistics is not employed regardless of IQ or functioning level. I myself am not currently in the top 10%. They also project that 500,000 autistic children will become adults in the next decade. AS neglects to cite any source for these figures and where they come from I have no idea.
AS also states:
A comprehensive Employment Tool Kit is in development to help adults with autism find and keep a job in the current competitive labor market, as well as help employers recognize the abilities and strengths of individuals with autism.
I'd be interested in exactly what this comprises of and who developed it and how they can possibly help autistic people find and keep jobs, particularly in a bad economy. I'm also curious as to whether or not these alleged strengths and abilities of autistic people is based on the research of Laurent Mottron to whom autism speaks awarded a nearly half million dollar grant. Dr. Mottron has written that autistic people are assigned menial tasks in jobs when they are capable of much better, but offers no evidence for this allegation. He apparently bases this on the abilities of autistic people to find embedded figures and superior memory and musical pitch abilities or their superior scores on the Raven's matrices versus the Wechsler.
Another project AS is engaged in is an employment think tank. These individuals seem to have about as much ability to think and common sense as the authors of that ironically named neurodiversity blog, The Thinking Person's guide to autism. They cite Specialisterne, the company in Denmark which exclusively employs ASD software testers. A google search has shown a variety of articles alleging that Specialisterne only stayed in business because of generous subsides from the Danish government, though I have not been able to find a definitive source. Founder, Thorkil Sonne, in one interview did deny his company received government subsidies. So it's unclear how well this model could work in a less socialist country such as the U.S. Another company in Illinois, Aspiritech, has a similar approach to Specialisterne but is apparently subsidized by grants and as far as I know has yet to turn a profit.
One of the most dubious considerations (at least to me) is that somehow neurotypical co-workers can be trained to work with autistic employees. AS is dreaming if they think that's going to happen. If they're so sure of this, then I am curious why they don't implement this strategy in their own organization.
Once again, I wish that Autism Speaks would either start employing autistic people in their organization or stop spreading propaganda and demagoguery that they don't really believe in.
Friday, July 13, 2012
What accommodations will autistic stakeholders suggest?
I just read an interesting post on a blog called harpocrates speaks in which the author criticizes some individuals from the age of autism blog who question the legitimacy of the autistic stakeholders who are public members of the IACC. This was in response to an individual claiming that autistic people who were dependent on the government for services had no right to refuse a cure should there be one. This position causes outrage among the neurodiverse autistics who state they would refuse a cure if one is ever found. This individual was responding to a comparison of wheelchair bound people asking for access rather than a cure. Left brain right brain blogger and IACC member Matt Carey, who is apparently against curing autism but feels the taxpayers should spend billions of dollars on special education for his offspring as well as other kids,also weighed in
Harpocrates does make a couple of valid points. There is no cure available and that a number of things the age of autism crowd touts as a cure or at least treatment are likely of questionable value if not outright quackery.
My question is, exactly what accommodations will neurodiversity extremist IACC members Noah Britton and Scott Robertson suggest that is anywhere near analogous to wheelchair access?
One reader, Liv's parents, suggested spending more taxpayer money on living arrangements so low functioning autistics won't bash their parents heads in. Apparently it's okay for the disabled person to bash a staff member's head on concrete but not their parents' heads.
In private emailings with Ari Ne'eman, he's suggested vocational training,though has no real proof it would enable the asd person to work in the same manner as wheelchair access would help someone with no or impaired legs get around. He also suggested eliminating social pleasantry as a hiring criteria in the workplace. This is certainly not realistic. ASAN has written on their website that the law requires employers to accommodate persons with autism. They neglect to mention that the law only requires reasonable accommodations (whatever that means). The law specifically states that anything that would provide a financial burden to the employer such as having to pay for a job coach out of their own pocket, a proofreader to check for errors, an aide to help control behavior, etc. is something employers don't legally have to provide. Contrary to what Ne'eman (and by extension likely IACC member Scott Robertson) believe,there is at least one legal precedent that refutes their position. in one court case, Jakubowsky vs. Christ Hospital, the sixth federal circuit court of appeals ruled that accepting an autistic persons' behavior was not a reasonable accommodation and the claimant lost. He attempted to appeal to the supreme court, but they refused to hear the case. So, it would appear there is no way autism could be feasibly accommodated for in the workplace in the same way that giving access to a wheelchair user could.
As far as I know, Ari Ne'eman during his brief tenure as an IACC public member, never suggested any accommodations. His legacy was of accusing an economist who did a study showing the expense of autism of being a eugenicist.
I realize that Noah Britton and Scott Robertson have been newly appointed to the IACC so in all fairness I should give them time to see if they can suggest any legitimate accommodations for ASDers. that is not an apples versus hurricane comparison to wheelchair users. There is no evidence that suggests to me that this will be the case--that either Britton or Robertson will have anything constructive to offer. Noah Britton apparently just wants to compare people who wish to cure their autistic children to the Ku Klux Klan as I've written earlier and that people who wish to cure autism, just want to selectively eliminate autism from the population. If there are any suggestions a member of the IACC or any other neurodiversity member has for accommodations as an alternative to an nonexistent cure, I'm interested in hearing them and they are welcome to comment in the comments section.
Harpocrates does make a couple of valid points. There is no cure available and that a number of things the age of autism crowd touts as a cure or at least treatment are likely of questionable value if not outright quackery.
My question is, exactly what accommodations will neurodiversity extremist IACC members Noah Britton and Scott Robertson suggest that is anywhere near analogous to wheelchair access?
One reader, Liv's parents, suggested spending more taxpayer money on living arrangements so low functioning autistics won't bash their parents heads in. Apparently it's okay for the disabled person to bash a staff member's head on concrete but not their parents' heads.
In private emailings with Ari Ne'eman, he's suggested vocational training,though has no real proof it would enable the asd person to work in the same manner as wheelchair access would help someone with no or impaired legs get around. He also suggested eliminating social pleasantry as a hiring criteria in the workplace. This is certainly not realistic. ASAN has written on their website that the law requires employers to accommodate persons with autism. They neglect to mention that the law only requires reasonable accommodations (whatever that means). The law specifically states that anything that would provide a financial burden to the employer such as having to pay for a job coach out of their own pocket, a proofreader to check for errors, an aide to help control behavior, etc. is something employers don't legally have to provide. Contrary to what Ne'eman (and by extension likely IACC member Scott Robertson) believe,there is at least one legal precedent that refutes their position. in one court case, Jakubowsky vs. Christ Hospital, the sixth federal circuit court of appeals ruled that accepting an autistic persons' behavior was not a reasonable accommodation and the claimant lost. He attempted to appeal to the supreme court, but they refused to hear the case. So, it would appear there is no way autism could be feasibly accommodated for in the workplace in the same way that giving access to a wheelchair user could.
As far as I know, Ari Ne'eman during his brief tenure as an IACC public member, never suggested any accommodations. His legacy was of accusing an economist who did a study showing the expense of autism of being a eugenicist.
I realize that Noah Britton and Scott Robertson have been newly appointed to the IACC so in all fairness I should give them time to see if they can suggest any legitimate accommodations for ASDers. that is not an apples versus hurricane comparison to wheelchair users. There is no evidence that suggests to me that this will be the case--that either Britton or Robertson will have anything constructive to offer. Noah Britton apparently just wants to compare people who wish to cure their autistic children to the Ku Klux Klan as I've written earlier and that people who wish to cure autism, just want to selectively eliminate autism from the population. If there are any suggestions a member of the IACC or any other neurodiversity member has for accommodations as an alternative to an nonexistent cure, I'm interested in hearing them and they are welcome to comment in the comments section.
Thursday, July 12, 2012
"Thousands" of persons with Asperger's who don't want a cure have Noah Britton. Who will represent the autistic people who wish to be cured?
The newly reconstituted IACC (Interagency autism coordinating committee), the panel of members from the federal government and general public with a stake in autism, who advise the government on how to direct research and advise the government on autism policy, had a full committee meeting a couple of days ago.
Back in April, I wrote a post discussing three of the newly appointed members of this august committee and my dissatisfaction with these individuals being selected for posts advising the government on how to deal with autism spectrum disorders.
There was another individual whom I was not familiar with at the time, Noah Britton, who, in retrospect, I wish I had commented on in the above-linked post.
If you go to approximately the 27 minute mark of the above-linked video, you'll see this guy giving his introduction to the committee as a newly appointed member. He states that he became a member of the IACC to represent "The thousands of people" with Aspergers who wish not to be cured and have the right to say no. While everyone else in the room is extremely well dressed, Mr. Britton attended the meeting wearing a raunchy white t-shirt with the crude lettering My Body, My choice emblazoned on the front.
A perusal using Google shows us that Mr. Britton has compared autism speaks to the Ku Klux Klan running the NAACP and not letting any black people in. Mr. Britton apparently is not familiar with the half million dollar research grant awarded to the Mottron group of whom Michelle Dawson is part of. He is also apparently unaware of their funding of autism talk TV run by anti-curebie Alex Plank. To the best of my knowledge, Autism Speaks has never funded any endeavors that a pro-cure autistic has been involved in.
I am curious as to where Mr. Britton comes up with his "thousands of people" figure, particularly given he uses it just for Asperger's and not for autism. As far as I can tell, he's just conjured this figure out of thin air. He also wants to represent one small segment of the autism community--those with Asperger's, and not represent other ASD's that are not Asperger's. It would seem a decent committee member would want to represent the interest of all persons with autism and not just his own.
I'm also not sure where Noah gets the idea that assuming a cure for autism is ever found in his lifetime that anyone is proposing to force him (or any other adult past the age of consent) to undergo it. Perhaps he'd like the government to legislate that persons with Asperger's under the age of 18 can have a choice independent of their parents assuming such cure is found, I don't know. I am also curious as to what his stance is on curing those on the spectrum who are not Asperger's.
Well, Mr. Britton, if you ever happen to read this post here's an inflammatory analogy to match your KKK-NAACP one: I believe appointing you to a government post dealing with autism is like appointing a member of the mafia to serve on their city's police commission. If any reader thinks lowly of me for stooping to Britton's level, so be it. Tit for tat.
Though I don't expect a cure to be found in my lifetime (particularly at my relatively advanced age), I do long for one and I wish those who are interested in autism would pursue one and someday, the autism society, autism speaks and the IACC can say, we can disband, we don't need to have these organizations anymore.
To date, five persons on the spectrum have been public members of the IACC. Every single one of them has been opposed to curing autism. Only one pro-cure autistic, as far as I know, has been nominated as a public member, he was not appointed. Not a single one of us has ever been appointed. So the score remains five to zero, though the IACC states they want balanced points of views. They seem heavily skewed towards neurodiversity, though the law states the committee was created for the purpose of combating autism. I'm wondering what is the sense of that?
Though I won't bandy about statistics in the same manner as Britton, I will say there are a good number of persons on the spectrum I know of who wish they could be cured. Myself, Jake Crosby, Oliver Canby, Chris Charette, Sue Rubin, Marty Murphy, Tom Mckean, Roger Kulp, just to name a few. It's likely there are thousands of others who feel the same way, who have to struggle every day with this horrible disability. However, many of these individuals are incapable of speaking or writing blog posts or even telling the IACC how much they hate this disability and wish a cure.
If I had my way, the combating autism act would be jettisoned and consequently the IACC abolished, but it does bother me the federal government has such a cavalier attitude toward those of us who wish a cure.
Now we know who at least one of the public member IACC represents. I wonder if there will ever be anyone to represent us.
Back in April, I wrote a post discussing three of the newly appointed members of this august committee and my dissatisfaction with these individuals being selected for posts advising the government on how to deal with autism spectrum disorders.
There was another individual whom I was not familiar with at the time, Noah Britton, who, in retrospect, I wish I had commented on in the above-linked post.
If you go to approximately the 27 minute mark of the above-linked video, you'll see this guy giving his introduction to the committee as a newly appointed member. He states that he became a member of the IACC to represent "The thousands of people" with Aspergers who wish not to be cured and have the right to say no. While everyone else in the room is extremely well dressed, Mr. Britton attended the meeting wearing a raunchy white t-shirt with the crude lettering My Body, My choice emblazoned on the front.
A perusal using Google shows us that Mr. Britton has compared autism speaks to the Ku Klux Klan running the NAACP and not letting any black people in. Mr. Britton apparently is not familiar with the half million dollar research grant awarded to the Mottron group of whom Michelle Dawson is part of. He is also apparently unaware of their funding of autism talk TV run by anti-curebie Alex Plank. To the best of my knowledge, Autism Speaks has never funded any endeavors that a pro-cure autistic has been involved in.
I am curious as to where Mr. Britton comes up with his "thousands of people" figure, particularly given he uses it just for Asperger's and not for autism. As far as I can tell, he's just conjured this figure out of thin air. He also wants to represent one small segment of the autism community--those with Asperger's, and not represent other ASD's that are not Asperger's. It would seem a decent committee member would want to represent the interest of all persons with autism and not just his own.
I'm also not sure where Noah gets the idea that assuming a cure for autism is ever found in his lifetime that anyone is proposing to force him (or any other adult past the age of consent) to undergo it. Perhaps he'd like the government to legislate that persons with Asperger's under the age of 18 can have a choice independent of their parents assuming such cure is found, I don't know. I am also curious as to what his stance is on curing those on the spectrum who are not Asperger's.
Well, Mr. Britton, if you ever happen to read this post here's an inflammatory analogy to match your KKK-NAACP one: I believe appointing you to a government post dealing with autism is like appointing a member of the mafia to serve on their city's police commission. If any reader thinks lowly of me for stooping to Britton's level, so be it. Tit for tat.
Though I don't expect a cure to be found in my lifetime (particularly at my relatively advanced age), I do long for one and I wish those who are interested in autism would pursue one and someday, the autism society, autism speaks and the IACC can say, we can disband, we don't need to have these organizations anymore.
To date, five persons on the spectrum have been public members of the IACC. Every single one of them has been opposed to curing autism. Only one pro-cure autistic, as far as I know, has been nominated as a public member, he was not appointed. Not a single one of us has ever been appointed. So the score remains five to zero, though the IACC states they want balanced points of views. They seem heavily skewed towards neurodiversity, though the law states the committee was created for the purpose of combating autism. I'm wondering what is the sense of that?
Though I won't bandy about statistics in the same manner as Britton, I will say there are a good number of persons on the spectrum I know of who wish they could be cured. Myself, Jake Crosby, Oliver Canby, Chris Charette, Sue Rubin, Marty Murphy, Tom Mckean, Roger Kulp, just to name a few. It's likely there are thousands of others who feel the same way, who have to struggle every day with this horrible disability. However, many of these individuals are incapable of speaking or writing blog posts or even telling the IACC how much they hate this disability and wish a cure.
If I had my way, the combating autism act would be jettisoned and consequently the IACC abolished, but it does bother me the federal government has such a cavalier attitude toward those of us who wish a cure.
Now we know who at least one of the public member IACC represents. I wonder if there will ever be anyone to represent us.
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