It seems that nowadays the chic activity among autism afficianados regardless of their stripes is bashing autism speaks, the microsoft of autism research funding. It does not matter where you lie on the autism political spectrum. If you're a member of the mercury militia you don't like them because they are not devoting enough funding to your pet projects or you feel that they are too dumb to realize autism is not really a genetic condition but rather a man made plague, probably by mercury, but in some cases of people who believe in an environmentally mediated increase in autism prevalence possibly something else. If you are someone who believes in the neurodiversity philosophy you don't like autism speaks because you believe that if they succeed in curing autism the person will be changed and they won't be the same person anymore, they will have a different brain. Or, like the mercury militia, you don't like genetic research, but your reasons are that you believe it will lead to a prenatal test where autistic fetuses will be aborted. Another reason you are unhappy is because they have no autistics who serve on any of the boards or have any position of power in the organization.
But why should I miss out on all the fun, even if due to my beliefs I am totally on the fringe since I have a unique view that does not agree with either camp. Actually I prefer to think I am a metaphorical island where I am one of the few persons interested in autism who is not on the fringe, but that is neither here nor there as my buddy Joseph would say.
I am like the high school kid who wants to join the in crowd or some enviable social clique. I want to join in the fun too, so here it is, surprise surprise to my readers who see I sometimes defend autism speaks because I like the idea of scientific research with the goal of curing or preventing autism. I am now going to come clean, I have some real problems with autism speaks, so I am going to join you in bashing them.
It all goes back to the days of AS's predecessor, CAN, before they were gobbled up by autism speaks in the corporate merger common to both for profit businesses and charitable organizations. In the days of CAN and before I retired when I was employed and had more money to throw around, I used to donate money to CAN, $100 here and there. Also, I donated $100 to CAN's eastcoast counterpart NAAR, another organization that existed before AS existed and was also gobbled up by autism speaks. I have yet to donate money to AS and even if I had it I would not donate a dime to them. But getting back to the topic at hand. I discovered that CAN was not the organization that I envisioned. Sally Bernard, one of the mercury militia's leaders, used her considerable wealth to influence CAN and get them to elect her president of the organization. Then CAN started to fund studies that investigated the possibility that thimerosal caused autism. I knew that thimerosal had nothing to do with autism for reasons I have detailed in an essay that I wrote, http://www.jonathans-stories.com/non-fiction/thimerosal.html where I showed there was a tripling in autism prevelance in the california DDS during a time when the thimerosal an infant received in vaccines was stable. So I was rather appalled that they would appoint Bernard to a position of huge power in their organization and would fund thimerosal. CAN also had bylaws in writing stating that they would only fund medical research. They then violated their own bylaws by funding some work Ivar Lovaas was doing. This is in spite of the fact that Lovaas has not published any adult outcomes from his 1987 study in spite of receiving funding from NIMH to do so. I stopped donating money to CAN after that.
Not much later, CAN became extinct after they and NAAR were gobbled up by autism speaks. I hoped the direction that autism speaks would take would be different from CAN, I hoped they would not make some of the same boneheaded mistakes that CAN made, but they did not fail to disappoint me.
Recently I found out that Luc Keita, a post-doctoral fellow that works in Dr. Laurent Mottron's lab receives funding from an autism speaks grant. Dr. Mottron also has a somewhat cozy relationship with autism speaks and attends their conferences, I know because I met him at one. Dr. Mottron also employs that well known activist in the anti-curebie movement Michelle Dawson. Michelle implies in one of her essays that anyone who would want a cure for a severely autistic boy who scratches his sister, damages the families property and keeps them all awake howling at night is somehow an intolerant bigot. Because I want to cure autism and wrote an essay detailing my suffering from autism she states that I want to deny autistic people, of which I am one, their civil rights. In spite of the fact that autism speaks plainly states they want a cure and prevention for autism, Dawson calls them a credible fund raising organization. Either she is a hypocrite or she believes that autistic people are write-offs who should have no rights whatsoever in spite of her rhetoric. What autism speaks does by funding the Mottron lab is in my opinion the equivalent to promoting a private in the army who makes propaganda broadcasts for the enemy during wartime to rank of general rather than court martialing him and prosecuting him for treason. If anyone feels that statement is inflammatory, so be it. Ms. Dawson seems to tell me that other scientists she has worked with have grants from AS. She encourages other scientists to get grants from AS regardless of whether or not they agree with the pro cure philosophy of AS. Dawson argues that science and politics are not intertwined. I disagree. In the case of autism speaks politics clearly begot scientific funding. Bob and Suzanne Wright worked hard to start this organization so their grandson would have an improbable shot of living a better life and not end up being crippled by autism for the rest of his life. The AS walks, the donations, etc. were all most likely begotten by people desiring a cure for autism, many, whom I suspect never heard of the ND movement and would probably be shocked that something like it could conceivably exist. Dawson's statements remind me of the 32-year-old trophy wife who marries the 67 year old billionaire and states that money and lust are not intertwined.
Probably even more bizarre I found out that autism speaks includes on its advisory committees Morton Gernsbacher. A psychology professor in Wisconsin who has an autistic child and does research in autism and wrote an essay entitled autistics need acceptance not cure. Ironically enough she was on some review committees for CAN when it existed also. I am mystified by why Dr. Gernsbacher who believes that autism should be accepted rather than cured would serve on scientific advisory boards of organizations whose philosophies I would think would be anathema to her own. But the more important question is why would autism speaks have a relationship with someone like that. After all, we don't hire John Dillinger and Al Capone to be police officers or FBI agents. So yes, autism speaks is not a terribly bright organization given the fact they would have an affiliation with such people who undermine the efforts and desires of those of us who view autism as a horrific affliction and wish that it could be cured and prevented (not abortions of autistic fetuses but prevented by altering the genetic mutation so the child won't have to grow up as a cripple).
Also, I agree with my pals in the neurodiversity movement. Autism Speaks should have autistic people on their boards or in positions of power, this is another reason I am not terribly fond of them. If a pro-cure autistic such as myself were on the board, they would not make the slip shod decisions of the NTs that run AS do that would actually fund a lab that employs michelle dawson, someone who gives aide and comfort to our enemy, autism The pro-cure autistics would have the intelligence not to allow an anti-cure person like Morton Gernsbacher to sit on their advisory committees. That is why they should not only put me on the board but allow me to run the whole show there. Anti-cure people would not be allowed to be involved with autism speaks, their funding would be discontinued as would the funding of any lab such as the Mottron lab who would employ such a person. anti-cure people would not be allowed to sit on scientific and advisory committees on an organization that has plainly said their main purpose is to seek a cure for autism. It would seem that these would be common sense decisions but apparently all common sense has been thrown out the window as far as the people who run AS are concerned.
But I don't think the neurodiversity affcianados would be happy with pro-cure autistics serving on the board. They would just call us token autistics or house autistics or say we were on the take. There are some who would say, that the majority of autistics don't want to be cured so we are not truly representative. To the neurodiversity people I have this to say, autism speaks is a pro-cure organization, the people who started it, acquired charitable donations, who donated their money to this organization walked the 5 kilometers for autism etc. all likely want a cure. They don't agree with you. So why should they allow you to serve on the board of autism speaks? If you want, start your own charitable organization and raise money to help your own cause. Don't expect to be a trophy wife who marries a much older man out of convenience because there is ready made capital to be had. Do your own work. Or is it that your movement is really so impotent, that you really have no alternative to latching onto autism speaks and try to use their money to promote your misguided agenda?
Zach Lassiter who has gained some celebrity through the t-shirt controversy absolutely had the right idea. I agree with his message that autism speaks does not speak for him and many other persons on the spectrum. These people have asperger's and not autism. They are speaking for people much more severely afflicted than you, so if autism speaks should go away, you should go away too. Go away neurodiversity asperger's people, you don't speak for me and you don't speak for autism speaks and there is no reason why you should. Zach if you happen to read this, thank you very much for your message that you printed on your t-shirt. If you want to make some money, Zach, maybe you could make another t-shirt and sell it to some pro cure people, particularly those involved with autism speaks and have the message on it:
"You don't speak for autism speaks, autism speaks speaks for itself, go away neurodiversity."
In the same vein, Sally Bernard and her minions don't need to serve on the boards of autism speaks or CAN. Sally and Tom's net worth is 15 times larger than autism speaks' assets if I am not mistaken. Clearly they can afford to start their own organization, they already have with SAFE MINDS. They can acquire all the capital they need to pursue their misguided agenda.
Well that is my bash of autism speaks and my take on things, I am glad I did not get left out of the party and I hope that all of those people who thought I was the only person left on the planet who liked autism speaks are happy.
Monday, June 30, 2008
Friday, June 27, 2008
neurodiversity faux pas acknowledged: But will they learn their lesson
Well for those who have been following the Zach t-shirt saga, it seems that once again some neurodiversity proponents have made absolute fools of themselves for doing such a slip shod job of fact checking. Zach, put the following info on his web page:
Zazzle: Well we have recieved letters in the past from um ah Autism Speaks in regards to prodcuts withtrademark violations so when our um content management staff came across this product they believed this shirt was in the um past correspondence with Autism Speaks but uh they did not specifically call on this product, this was a decision by an employee from content managment.[...]
So apparently neurodiversity's latest cause celebre' turns out to be completely bogus. Zach did offer an apology to autism speaks for trying to turn this into a figurative federal case with no evidence whatsoever that autism speaks had anything to do with this. I am glad Zach acknowledged his error and I applaud him for that. However, will Amanda Baggs apologize for using this as an excuse to villify the organization she detests so much? Will autism bitch from hell print a retraction on her web page? Last but not least, will Alex Plank put an update on wrongplanet.net Alex seems to have a tendency to come to erroneous assumptions without doing any fact checking, like his assumption that most autistics are like him and don't want to be cured. I asked him publically how he came to that assumption but he still refuses to answer. I hope that this will teach Alex not to do such a slip shod job of fact checking as his web page gets a considerable amount of traffic. At some point such a shoddy job of managing a web page with thousands of subscribers may put him into legal jeopardy if he continues to engage in such irresponsible behavior.
I wonder if my new found friend, Emily, will write the retraction on her blog as she promised me, I hope so.
We will see if this is a lesson learned for those in the neurodiversity movement who have such an axe to grind?
Some will say that because the content manager of Zazzle sent Zach the letter he had every right to assume that the decision did come from autism speaks. Well it seems in this instance common sense was thrown out the window. It seems that many neurodiversity proponents are so bigoted they would not stop to think that assuming Zach's t-shirt did not violate any copyrights that maybe a huge multimillion dollar corporation would not deliberately threaten a bogus lawsuit against a small t-shirt salesperson. This should seem obvious. Of course I must take some cupability myself because I did not think of this until the following day, so I suppose I might have to put on my dunce cap and sit in the corner for half an hour too. But I did think about it the next day. I don't know if it was my blog entry that prompted Zach to delve further into the situation but I am glad it was resolved.
Somehow, I don't think these neurodiversity proponents have learned their lesson. They will make one too many mistakes like this and will get into some sort of trouble, legally or otherwise somewhere along the line.
I am reminded of the old Oriental proverb: The dogs may bark but the caravan moves on. I don't think most people interested in autism ever took the neurodiversity movement very seriously. Hopefully this new faux pas will make them look all the sillier. The caravan of autism speaks doing research in the hopes of finding a cure for this dreadful disorder will move on, in spite of all the barking dogs. However, it would seem that this new episode in the neurodiversity movement versus autism speaks will prove that it's bark is worse than it's bite.
Zazzle: Well we have recieved letters in the past from um ah Autism Speaks in regards to prodcuts withtrademark violations so when our um content management staff came across this product they believed this shirt was in the um past correspondence with Autism Speaks but uh they did not specifically call on this product, this was a decision by an employee from content managment.[...]
So apparently neurodiversity's latest cause celebre' turns out to be completely bogus. Zach did offer an apology to autism speaks for trying to turn this into a figurative federal case with no evidence whatsoever that autism speaks had anything to do with this. I am glad Zach acknowledged his error and I applaud him for that. However, will Amanda Baggs apologize for using this as an excuse to villify the organization she detests so much? Will autism bitch from hell print a retraction on her web page? Last but not least, will Alex Plank put an update on wrongplanet.net Alex seems to have a tendency to come to erroneous assumptions without doing any fact checking, like his assumption that most autistics are like him and don't want to be cured. I asked him publically how he came to that assumption but he still refuses to answer. I hope that this will teach Alex not to do such a slip shod job of fact checking as his web page gets a considerable amount of traffic. At some point such a shoddy job of managing a web page with thousands of subscribers may put him into legal jeopardy if he continues to engage in such irresponsible behavior.
I wonder if my new found friend, Emily, will write the retraction on her blog as she promised me, I hope so.
We will see if this is a lesson learned for those in the neurodiversity movement who have such an axe to grind?
Some will say that because the content manager of Zazzle sent Zach the letter he had every right to assume that the decision did come from autism speaks. Well it seems in this instance common sense was thrown out the window. It seems that many neurodiversity proponents are so bigoted they would not stop to think that assuming Zach's t-shirt did not violate any copyrights that maybe a huge multimillion dollar corporation would not deliberately threaten a bogus lawsuit against a small t-shirt salesperson. This should seem obvious. Of course I must take some cupability myself because I did not think of this until the following day, so I suppose I might have to put on my dunce cap and sit in the corner for half an hour too. But I did think about it the next day. I don't know if it was my blog entry that prompted Zach to delve further into the situation but I am glad it was resolved.
Somehow, I don't think these neurodiversity proponents have learned their lesson. They will make one too many mistakes like this and will get into some sort of trouble, legally or otherwise somewhere along the line.
I am reminded of the old Oriental proverb: The dogs may bark but the caravan moves on. I don't think most people interested in autism ever took the neurodiversity movement very seriously. Hopefully this new faux pas will make them look all the sillier. The caravan of autism speaks doing research in the hopes of finding a cure for this dreadful disorder will move on, in spite of all the barking dogs. However, it would seem that this new episode in the neurodiversity movement versus autism speaks will prove that it's bark is worse than it's bite.
Thursday, June 26, 2008
house autistics redux department
I have recently come across an interesting video on youtube that was produced by neurodiversity activitist and hub blogger Christschool
The autism hub claims to promote acceptance and tolerance hmmmmm???
The autism hub claims to promote acceptance and tolerance hmmmmm???
Monday, June 23, 2008
The Zach T-shirt saga: Autism speaks' side of the story
As some people in the neurodiversity movement know, an individual named Zach is alleging that autism speaks contacted an internet service provider zazzle.com saying they would no longer allow him to post ads selling the t-shirts on their web site. I posted something about this previously, in my last post about Amanda Baggs' grossly inconsistent behavior in crying "censorship" on zazzle's part when she herself advocates censorship of any comment that does not agree with what she believes in on ANI's mailing lists on some of autistic.org's lists, etc.
Afterwards, I was wondering, could this story be real. Autism speaks was being vilified by all of these neurodiversity afficianados without being allowed to tell their side of the story. They were calling autistic speaks "bullies". The veracity of the story seemed far fetched to me as it would not seem worth the while of autism speaks to actually try to engage in this type of behavior and considering all the bashing they get on the internet all of the time if they would really contact zazzle and give some sort of directive that zach's ads be pulled. Zach claimed to have proof of this but as far as I could tell this "proof" only consisted of a letter he alleges Zazzle wrote him saying that they were contacted by autism speaks. Clearly this guy has an ax to grind against autism speaks it certainly seemed conceivable he could be fabricating the whole thing. Another explanation is that someone at Zazzle had an autistic child who they wanted a cure for their child and was offended by these t-shirts was just trying to get zach's goat and claimed that the directive came from autism speaks when it really did not. Of course I realized it was possible that Zach might be telling the truth, though I had no way of verifying this as no one from autism speaks wanted to come forward and post their side of the story on the internet.
I decided that in all fairness that I should contact autism speaks and find out what their version of the event was. I talked to a woman in their communications department named Dana Marnay. She stated that Zazzle felt that Zach was violating their terms of service policy for some reason and that autism speaks had nothing to do with this THEY IN NO WAY SHAPE OR FORM CONTACTED ZAZZLE PERIOD! The decision to pull zach's t-shirt ads they said was entirely Zazzle's autism speaks had nothing to do with it whatsoever.
I don't know whether Zach is lying about this or not and I don't know if the letter zazzle sent to him was a fabrication or not. Assuming this letter is not an out and out fabrication on Zach's part, then maybe the representative of zazzle was lying when he told this young man that they were contacted by autism speaks.
I know that I am not lying. Those skeptics can call Dana Marnay at autism speaks at (212) 252-8584 and ask her themselves.
Clearly Wrong Planet, autism bitch from hell, Ballasexistenz (AKA Amanda Baggs) just wanted to assume that this story of Zach's is true.
If Zach or anyone else from the neurodiversity movement has proof that I am making this up or the communications lady at Autism Speaks is lying when she told me that autism speaks never ever contacted Zazzle, I say bring it on!! Seems that now if Autism speaks really wanted to stifle the speech of the autistics who don't like them, they would very possibly have a legal basis for suing Zach for libel, I am pretty sure they won't do this. If this story is also true, then Amanda should have no objection to Zazzle not allowing content on their sites that they don't deem fit just as Amanda feels she has that right.
In the meantime for those old enough to remember the TV show from my youth To Tell The Truth that was on TV during the stone age: Would the real bully please stand up!
Afterwards, I was wondering, could this story be real. Autism speaks was being vilified by all of these neurodiversity afficianados without being allowed to tell their side of the story. They were calling autistic speaks "bullies". The veracity of the story seemed far fetched to me as it would not seem worth the while of autism speaks to actually try to engage in this type of behavior and considering all the bashing they get on the internet all of the time if they would really contact zazzle and give some sort of directive that zach's ads be pulled. Zach claimed to have proof of this but as far as I could tell this "proof" only consisted of a letter he alleges Zazzle wrote him saying that they were contacted by autism speaks. Clearly this guy has an ax to grind against autism speaks it certainly seemed conceivable he could be fabricating the whole thing. Another explanation is that someone at Zazzle had an autistic child who they wanted a cure for their child and was offended by these t-shirts was just trying to get zach's goat and claimed that the directive came from autism speaks when it really did not. Of course I realized it was possible that Zach might be telling the truth, though I had no way of verifying this as no one from autism speaks wanted to come forward and post their side of the story on the internet.
I decided that in all fairness that I should contact autism speaks and find out what their version of the event was. I talked to a woman in their communications department named Dana Marnay. She stated that Zazzle felt that Zach was violating their terms of service policy for some reason and that autism speaks had nothing to do with this THEY IN NO WAY SHAPE OR FORM CONTACTED ZAZZLE PERIOD! The decision to pull zach's t-shirt ads they said was entirely Zazzle's autism speaks had nothing to do with it whatsoever.
I don't know whether Zach is lying about this or not and I don't know if the letter zazzle sent to him was a fabrication or not. Assuming this letter is not an out and out fabrication on Zach's part, then maybe the representative of zazzle was lying when he told this young man that they were contacted by autism speaks.
I know that I am not lying. Those skeptics can call Dana Marnay at autism speaks at (212) 252-8584 and ask her themselves.
Clearly Wrong Planet, autism bitch from hell, Ballasexistenz (AKA Amanda Baggs) just wanted to assume that this story of Zach's is true.
If Zach or anyone else from the neurodiversity movement has proof that I am making this up or the communications lady at Autism Speaks is lying when she told me that autism speaks never ever contacted Zazzle, I say bring it on!! Seems that now if Autism speaks really wanted to stifle the speech of the autistics who don't like them, they would very possibly have a legal basis for suing Zach for libel, I am pretty sure they won't do this. If this story is also true, then Amanda should have no objection to Zazzle not allowing content on their sites that they don't deem fit just as Amanda feels she has that right.
In the meantime for those old enough to remember the TV show from my youth To Tell The Truth that was on TV during the stone age: Would the real bully please stand up!
Saturday, June 21, 2008
neurodiversity advocates who live in glass houses department
Well that well known neurodiversity activist amanda Baggs is at it again.
You can check out her latest blog entry: http://ballastexistenz.autistics.org/?p=542
In this blog entry Amanda is criticizing autism speaks because they seem to want to protect their copyright infringement rights from those in the neurodiversity community who want to parody them. Somehow Amanda and others find this objectionable and claim that this is because Autism speaks wants to stifle points of view of autism self-advocates who disagree with them.
One thing I read that interested me was that Larry Arnold had acquired a domain name with autism speaks in it. Larry, another well known neurodiversity who I understand takes umbrage of controls in autism studies who don't have autism being described as healthy. He seems to think someone with autism is not unhealthy. Why this is so baffles me. He also claims that this site will be used for self-advocacy and not NT bashing. Sometimes, though I wonder what the difference is. From what I have seen of the neurodiversity movement it seems the vast majority of their activities is being abusive to parents who wish a cure for autistics and disagree with them, so I am not sure what the difference between the two is.
More Germane and to the point is that Amanda may not be aware of the fact that autism speaks has a message board www.autismspeaks.org On this message board, they have a very loose comment moderation policy and only restrict people from using profane language. NT parents are constantly bashed in this forum as is autismspeaks itself. They don't seem to mind this. Constantly neurodiversity advocates protest a non-existent cure that autismspeaks wishes to find. The people who moderate the autism speaks message board don't seem to mind these activities by neurodiversity advocates at all. I think Amanda, who David Seidel has said in one of the posts does not read this message board, should be made aware of this. I have sent Amanda an email explaining this. She might find out about this blog entry also. One person who answered her comments is this young man (about 21 I think) named beau who has autism and is a neurodiversity advocate who constantly writes anti-cure rhetoric and other negative things on this board, yet posts on Amanda's comments that Autism speaks stifles opinions from autistics who don't agree with them. Seems very strange that he would say something like this since i dont think any of beau's posts have been censored on the autismspeaks board.
Amanda on the other hand, has been very active in ANI, a neurodiversity organization which promoted internet censorship and would not allow people to make any comment that disagreed with them on their internet mailing list. I seem to remember autistics.org had some sort of similar thing and Amanda said it was not censorship and defined censorship as something else. I also saw that autism hub organizer Steve Dionne was apparently deeply offended that someone would link to my essay, neurodiversity just say no to their signature line in the autism speaks newsgroups and urged them to take it out of their signature line. Also several years ago when I was reading and posting on the usenet newsgroup alt.support.autism, one person wrote that this was "autistic friendly space" and the autistics on the board took offense to anyone saying autism was an affliction that needed to be cured. I realize Amanda may not know about the people allowed to voice their anti-autismspeaks opinions on the autismspeaks.org message board as she may not read it herself as Dave Seidel pointed out. . I wonder what Amanda would think of this.
It seems to me that at least one neurodiversity proponent is throwing stones in a house made of fragile glass.
You can check out her latest blog entry: http://ballastexistenz.autistics.org/?p=542
In this blog entry Amanda is criticizing autism speaks because they seem to want to protect their copyright infringement rights from those in the neurodiversity community who want to parody them. Somehow Amanda and others find this objectionable and claim that this is because Autism speaks wants to stifle points of view of autism self-advocates who disagree with them.
One thing I read that interested me was that Larry Arnold had acquired a domain name with autism speaks in it. Larry, another well known neurodiversity who I understand takes umbrage of controls in autism studies who don't have autism being described as healthy. He seems to think someone with autism is not unhealthy. Why this is so baffles me. He also claims that this site will be used for self-advocacy and not NT bashing. Sometimes, though I wonder what the difference is. From what I have seen of the neurodiversity movement it seems the vast majority of their activities is being abusive to parents who wish a cure for autistics and disagree with them, so I am not sure what the difference between the two is.
More Germane and to the point is that Amanda may not be aware of the fact that autism speaks has a message board www.autismspeaks.org On this message board, they have a very loose comment moderation policy and only restrict people from using profane language. NT parents are constantly bashed in this forum as is autismspeaks itself. They don't seem to mind this. Constantly neurodiversity advocates protest a non-existent cure that autismspeaks wishes to find. The people who moderate the autism speaks message board don't seem to mind these activities by neurodiversity advocates at all. I think Amanda, who David Seidel has said in one of the posts does not read this message board, should be made aware of this. I have sent Amanda an email explaining this. She might find out about this blog entry also. One person who answered her comments is this young man (about 21 I think) named beau who has autism and is a neurodiversity advocate who constantly writes anti-cure rhetoric and other negative things on this board, yet posts on Amanda's comments that Autism speaks stifles opinions from autistics who don't agree with them. Seems very strange that he would say something like this since i dont think any of beau's posts have been censored on the autismspeaks board.
Amanda on the other hand, has been very active in ANI, a neurodiversity organization which promoted internet censorship and would not allow people to make any comment that disagreed with them on their internet mailing list. I seem to remember autistics.org had some sort of similar thing and Amanda said it was not censorship and defined censorship as something else. I also saw that autism hub organizer Steve Dionne was apparently deeply offended that someone would link to my essay, neurodiversity just say no to their signature line in the autism speaks newsgroups and urged them to take it out of their signature line. Also several years ago when I was reading and posting on the usenet newsgroup alt.support.autism, one person wrote that this was "autistic friendly space" and the autistics on the board took offense to anyone saying autism was an affliction that needed to be cured. I realize Amanda may not know about the people allowed to voice their anti-autismspeaks opinions on the autismspeaks.org message board as she may not read it herself as Dave Seidel pointed out. . I wonder what Amanda would think of this.
It seems to me that at least one neurodiversity proponent is throwing stones in a house made of fragile glass.
Tuesday, June 17, 2008
Darius McCollum: Cause Celebre' for neurodiversity?
Joseph of the natural variation blog posed an interesting question to me in my previous post about autistic subway afficianado Darius McCollum. Is the reason the New York transit won't give the man a job due to incompetence or societal prejudice. I explained in my response, which interested readers can read in the comments section of my previous entry, that I believed it was neither.
Joseph's question, however, gave me an incredible inspiration. The Autistic self-advocacy Network and other neurodiversity leaning organizations are always claiming to be promoting a better life for autistic people. How they did this by putting so much energy in the ransom notes campaign is beyond me. I really don't understand what the ransom notes campaign accomplished. It does not seem to me to have benefitted any person with autism in any way, found them a girlfriend or job or made them function better or made their life better in any way. It did nothing to ameliorate bullying of autistic children or give autistics a better image.
What about them engaging in a more constructive activity? The one I have in mind is providing either some sort of legal defense fund for McCollum or finding a lawyer who could do probono work for McCollum in what will soon be his umpteenth criminal trial. Then, assuming an acquital or suspended sentence could be obtained, ASAN and other organizations could convince the New York Metro Authority to give Darius a job and show somehow that this man would be a dedicated worker and the City of New York would not have to worry about liability.
Is this notion farfetched? After all, if memory serves me correctly Kathleen Seidel found an attorney on a pro bono basis to help her quash the subpoena directed against her (I guess any commenter can correct me if I am wrong about this) An attorney could be found for McCollum also. In one of the articles I read about him his parents were deeply in debt because of all the legal costs his train obsession had incured. Joseph could also do a statistical analysis, which he seems apt at, to show a mathematical model of why the city of New York would not have to worry about liability if McCollum were in their employ. They could engage in the same type of flier campaigns, phone calls, petitions and complaints that occurred during the ransom note campaign. If they would try to advocate on McCollum's behalf, let alone successfully enabling him to land a job rather than return to sing sing the neurodiversity people would earn some respect from me.
I wonder what the probability of them advocating for McCollum is? I suspect they won't do it. Perhaps ASAN and other organizations care less about helping people then they do about their bruised egos. Their feelings are hurt because some people by implying autism needs a cure are saying they are less than perfect people. McCollum presents them with such an incredible opportunity though. It is much easier to engage in a smear campaign against the ransom notes, easier to bash and insult parents who may be misguided but have the best of intentions for their kids. Easier to insult organizations like Autism Speaks and claim they commit genocide, yet flock to Michelle Dawson's comment board and blog like flies to honey in spite of the fact that people in the lab she works in get funding from autism speaks and her boss Laurent Mottron participates in meetings with researchers that autism speaks sponsors and apparently tries to get funding from this organization that neurodiversity hates so much (I know because i met Dr. Mottron at one of those meetings).
To be blunt I think organizations like ASAN and other neurodiversity proponents should put their money (figurative or literal) where their mouths are. Some of them point to the huge success of gay people in advocating for themselves, yet ignore the fact that the gay community is well financed and most persons with autism (a fact these neurodiversity people won't acknowledge) have very little money to offer to a cause. Yet they still believe they can change society to have a more accepting attitude of autistics and they can achieve the same kind of civil rights status.
Well, ASAN members, GRASP members, wrong planet afficianados, ANI members and aspies for freedom and other neurodiversity groups, here's your chance. One of your own fellow aspies needs help. He needs it badly. Are you going to spend some time and money to help him or are you going to just do some more non-productive bellyaching so that I will have to offer you some cheese with your next whine?
Joseph's question, however, gave me an incredible inspiration. The Autistic self-advocacy Network and other neurodiversity leaning organizations are always claiming to be promoting a better life for autistic people. How they did this by putting so much energy in the ransom notes campaign is beyond me. I really don't understand what the ransom notes campaign accomplished. It does not seem to me to have benefitted any person with autism in any way, found them a girlfriend or job or made them function better or made their life better in any way. It did nothing to ameliorate bullying of autistic children or give autistics a better image.
What about them engaging in a more constructive activity? The one I have in mind is providing either some sort of legal defense fund for McCollum or finding a lawyer who could do probono work for McCollum in what will soon be his umpteenth criminal trial. Then, assuming an acquital or suspended sentence could be obtained, ASAN and other organizations could convince the New York Metro Authority to give Darius a job and show somehow that this man would be a dedicated worker and the City of New York would not have to worry about liability.
Is this notion farfetched? After all, if memory serves me correctly Kathleen Seidel found an attorney on a pro bono basis to help her quash the subpoena directed against her (I guess any commenter can correct me if I am wrong about this) An attorney could be found for McCollum also. In one of the articles I read about him his parents were deeply in debt because of all the legal costs his train obsession had incured. Joseph could also do a statistical analysis, which he seems apt at, to show a mathematical model of why the city of New York would not have to worry about liability if McCollum were in their employ. They could engage in the same type of flier campaigns, phone calls, petitions and complaints that occurred during the ransom note campaign. If they would try to advocate on McCollum's behalf, let alone successfully enabling him to land a job rather than return to sing sing the neurodiversity people would earn some respect from me.
I wonder what the probability of them advocating for McCollum is? I suspect they won't do it. Perhaps ASAN and other organizations care less about helping people then they do about their bruised egos. Their feelings are hurt because some people by implying autism needs a cure are saying they are less than perfect people. McCollum presents them with such an incredible opportunity though. It is much easier to engage in a smear campaign against the ransom notes, easier to bash and insult parents who may be misguided but have the best of intentions for their kids. Easier to insult organizations like Autism Speaks and claim they commit genocide, yet flock to Michelle Dawson's comment board and blog like flies to honey in spite of the fact that people in the lab she works in get funding from autism speaks and her boss Laurent Mottron participates in meetings with researchers that autism speaks sponsors and apparently tries to get funding from this organization that neurodiversity hates so much (I know because i met Dr. Mottron at one of those meetings).
To be blunt I think organizations like ASAN and other neurodiversity proponents should put their money (figurative or literal) where their mouths are. Some of them point to the huge success of gay people in advocating for themselves, yet ignore the fact that the gay community is well financed and most persons with autism (a fact these neurodiversity people won't acknowledge) have very little money to offer to a cause. Yet they still believe they can change society to have a more accepting attitude of autistics and they can achieve the same kind of civil rights status.
Well, ASAN members, GRASP members, wrong planet afficianados, ANI members and aspies for freedom and other neurodiversity groups, here's your chance. One of your own fellow aspies needs help. He needs it badly. Are you going to spend some time and money to help him or are you going to just do some more non-productive bellyaching so that I will have to offer you some cheese with your next whine?
Sunday, June 15, 2008
Darius McCollum busted again
A recent New York Times article has come out about Darius McCollum being arrested for impersonating a New York City Transit system employee. McCollum is a man who is alleged to have Asperger's symptom and is absolutely obsessed by trains, in particular the New York City transit system. This is not the first time McCollum has been arrested. He has comitted this same crime before multiple times and has even spent time in prison.
As a boy, McCollum grew up near one of the subway stations and would hang out there all the time and became friendly with a lot of the city's transit workers. They showed him the ropes and he managed to learn more about the New York subways than any person alive. He apparently could not get a job working for the New York transit system. This was in spite of his intense desire to work there and considerable expertise. Instead he chose to impersonate an employee instead doing the job as well as a real worker could until he was discovered and busted.
Temple Grandin in one of her many simplistic notions about autism states that the OCD symptomatology of autistics is not a liability but is rather a gift. She states that problems autistics have with making a living can be easily solved. They can channel their obsessions into productive activities and be gainfully employed. The only real example that she gives is of herself and the fact that her obsession with livestock, cattle shoots and squeeze machines helped her to land her lucrative career as a slaughterhouse designer. She lauds her own success in her various books. In Emergence Labeled autistic she states that she shows that the behaviors of autism can be modified and controlled and that autistics can be a success. Many persons with autism no longer need to cry their tears of toasted snow because they are unable to make a living. In one article she wrote, she talks about a man who is obsessed with sliding doors and claims that this obsession could be channeled into helping this man with autism have a career in electronics. She claims that an autistic man who would commit a faux pas by asking women, "where are your earrings" due to an obsession with jewelry could have this obsession channeled into a career as a jeweler.
She gives an example of an autistic Ph.D. level mathematician who had not worked for years, because there were noise sensitivity issues that prevented him from being a math professor. She states a research job would have been more appropriate. If the research job is more appropriate then why couldn't he have gotten it? Could it be that Grandin's ideas are just simplistic solutions for those who cry tears of toasted snow? The prospective electronics specialist and jeweler are also conjecture on her part. There is no evidence that obsessions can be successfully turned into careers so that a person with autism would never have to worry about being on the dole again.
Darius McCollum is an example of someone whose obsession was not turned into a successful career. According to Grandin's logic his obsession with trains, subways and the NYC transit system should have easily landed him a job. This is particularly true in light of the fact that unlike the examples that Grandin gives in her conjecture of what could be turned into a career McCollum actually does have considerable expertise in the New York subway system. His Asperger's however did not help a career in this field to pan out.
News of McCollum's most recent arrest will not spark this issue to the forefront. People will continue to cry their tears of toasted snow, thinking there are easy quick fix solutions to the problems of autistics that so many persons propose. I believe the sad saga of Darius McCollum is an example to show that at least one of these quick fix solutions is in fact bogus.
As a boy, McCollum grew up near one of the subway stations and would hang out there all the time and became friendly with a lot of the city's transit workers. They showed him the ropes and he managed to learn more about the New York subways than any person alive. He apparently could not get a job working for the New York transit system. This was in spite of his intense desire to work there and considerable expertise. Instead he chose to impersonate an employee instead doing the job as well as a real worker could until he was discovered and busted.
Temple Grandin in one of her many simplistic notions about autism states that the OCD symptomatology of autistics is not a liability but is rather a gift. She states that problems autistics have with making a living can be easily solved. They can channel their obsessions into productive activities and be gainfully employed. The only real example that she gives is of herself and the fact that her obsession with livestock, cattle shoots and squeeze machines helped her to land her lucrative career as a slaughterhouse designer. She lauds her own success in her various books. In Emergence Labeled autistic she states that she shows that the behaviors of autism can be modified and controlled and that autistics can be a success. Many persons with autism no longer need to cry their tears of toasted snow because they are unable to make a living. In one article she wrote, she talks about a man who is obsessed with sliding doors and claims that this obsession could be channeled into helping this man with autism have a career in electronics. She claims that an autistic man who would commit a faux pas by asking women, "where are your earrings" due to an obsession with jewelry could have this obsession channeled into a career as a jeweler.
She gives an example of an autistic Ph.D. level mathematician who had not worked for years, because there were noise sensitivity issues that prevented him from being a math professor. She states a research job would have been more appropriate. If the research job is more appropriate then why couldn't he have gotten it? Could it be that Grandin's ideas are just simplistic solutions for those who cry tears of toasted snow? The prospective electronics specialist and jeweler are also conjecture on her part. There is no evidence that obsessions can be successfully turned into careers so that a person with autism would never have to worry about being on the dole again.
Darius McCollum is an example of someone whose obsession was not turned into a successful career. According to Grandin's logic his obsession with trains, subways and the NYC transit system should have easily landed him a job. This is particularly true in light of the fact that unlike the examples that Grandin gives in her conjecture of what could be turned into a career McCollum actually does have considerable expertise in the New York subway system. His Asperger's however did not help a career in this field to pan out.
News of McCollum's most recent arrest will not spark this issue to the forefront. People will continue to cry their tears of toasted snow, thinking there are easy quick fix solutions to the problems of autistics that so many persons propose. I believe the sad saga of Darius McCollum is an example to show that at least one of these quick fix solutions is in fact bogus.
Thursday, June 12, 2008
JB Handley my data from California are sure different from yours
JB Handley in his latest post on the age of autism website is claiming that he has documentation from the state of California showing a correlation between DTP vaccination rates between the early 1980s and 1990s and increasing prevalence of autism rates in the state of California.
He presents his data here: http://www.putchildrenfirst.org/media/4.6.pdf
Here is the data that I received from the state of California a couple of years ago when I asked about rates of DTP vaccination uptake: http://www.jonathans-stories.com/non-fiction/dtpcoverage.xls
This is supposed to be the same data from the same group of children who received four DTP shots before going to kindergarten.
You can see the huge differences in the numbers however. Handley's data suggests that in children born during the early to mid 1980s the vaccination rates were very low, lower than 50% or about 50% in some cases.
You can see in the data that I received from the state of California is quite different from JB Handley's showing these vaccination rates are at least 85% or higher in this same group of children. Perhaps there is an explanation for Handley's data being so different from mine, I don't know. Handley is suggesting that this data resulted in some sort of CDC cover-up because it would show a huge correlation between DTP vaccination rates and increases in autism.
Of course one problem with Handley's assessment is autism prevalence increases are not just restricted to California but autism prevalence increased all over the United States. Prior to 1991 the DTP vaccine was the only thimerosal containing vaccine used in the United States. Therefore Handley would have to come up with figures showing increases in uptake nation wide. Surveys taken by the CDC contradict this notion here: http://www.jonathans-stories.com/non-fiction/Simpson4SurveysAJPM2001.pdf
Of course it is my word against Handley's a stanford graduate millionaire businessman, and me a humble autism sufferer, unemployed blogger who never did amount to much due to his disability. Handley neglects to explain why, if his figures are real and in fact did come from the state of California why there would not have been a decrease in pertussis rates in children of this age. Since it would presumably be no more than 1/150 children who were sensitive to the vaccines the pertussis decrease would have to have been of a much greater magnitude than the autism increase. If there is any evidence of a decrease in pertussis Handley does not show it. In fact pertussis during those years has been on a slight upswing nationwide shown here: http://www.cdc.gov/vaccines/vpd-vac/pertussis/dis-faqs.htm This link also shows how dramatically pertussis decreased when the vaccine was introduced in the 1940's. All of these things are completely inconsistent with Handley's data.
Could it be Handley and his follows have some sort of interest in this. Generation rescue, the organization Handley started has the quick fix simplistic solution of curing autism through chelation. At least in the past, they claimed that autism was just another name for mercury poisoning. I do not know if Handley's letter from Dale Lorings to Diane Simpson is real or not. Only that it is totally inconsistent with the data I received from the state of california, the lack of decrease in pertussis during this same period and the increases in autism prevalence throughout the u.s. in spite of slightly decreasing rates of uptake nationwide in the CDC survey that I linked to above.
I think Handley should give a better explaination of his statistics.
He presents his data here: http://www.putchildrenfirst.org/media/4.6.pdf
Here is the data that I received from the state of California a couple of years ago when I asked about rates of DTP vaccination uptake: http://www.jonathans-stories.com/non-fiction/dtpcoverage.xls
This is supposed to be the same data from the same group of children who received four DTP shots before going to kindergarten.
You can see the huge differences in the numbers however. Handley's data suggests that in children born during the early to mid 1980s the vaccination rates were very low, lower than 50% or about 50% in some cases.
You can see in the data that I received from the state of California is quite different from JB Handley's showing these vaccination rates are at least 85% or higher in this same group of children. Perhaps there is an explanation for Handley's data being so different from mine, I don't know. Handley is suggesting that this data resulted in some sort of CDC cover-up because it would show a huge correlation between DTP vaccination rates and increases in autism.
Of course one problem with Handley's assessment is autism prevalence increases are not just restricted to California but autism prevalence increased all over the United States. Prior to 1991 the DTP vaccine was the only thimerosal containing vaccine used in the United States. Therefore Handley would have to come up with figures showing increases in uptake nation wide. Surveys taken by the CDC contradict this notion here: http://www.jonathans-stories.com/non-fiction/Simpson4SurveysAJPM2001.pdf
Of course it is my word against Handley's a stanford graduate millionaire businessman, and me a humble autism sufferer, unemployed blogger who never did amount to much due to his disability. Handley neglects to explain why, if his figures are real and in fact did come from the state of California why there would not have been a decrease in pertussis rates in children of this age. Since it would presumably be no more than 1/150 children who were sensitive to the vaccines the pertussis decrease would have to have been of a much greater magnitude than the autism increase. If there is any evidence of a decrease in pertussis Handley does not show it. In fact pertussis during those years has been on a slight upswing nationwide shown here: http://www.cdc.gov/vaccines/vpd-vac/pertussis/dis-faqs.htm This link also shows how dramatically pertussis decreased when the vaccine was introduced in the 1940's. All of these things are completely inconsistent with Handley's data.
Could it be Handley and his follows have some sort of interest in this. Generation rescue, the organization Handley started has the quick fix simplistic solution of curing autism through chelation. At least in the past, they claimed that autism was just another name for mercury poisoning. I do not know if Handley's letter from Dale Lorings to Diane Simpson is real or not. Only that it is totally inconsistent with the data I received from the state of california, the lack of decrease in pertussis during this same period and the increases in autism prevalence throughout the u.s. in spite of slightly decreasing rates of uptake nationwide in the CDC survey that I linked to above.
I think Handley should give a better explaination of his statistics.
Wednesday, June 11, 2008
More absurd nonsense from age of autism website
Well my friends at the age of autism website, with their quick fix solutions of vaccines being the etiology of autism and research in this area being the salvation for persons with autism are at it again.
In one of their latest posts they laud actor Charlie Sheen who is trying to stop his ex-wife actress Denise Richards from vaccinating their daughters because of the evidence that vaccines cause autism. Sheen has stated he will sue if necessary to stop his ex-wife. The post goes on to further state that Charlie Sheen has done his homework in looking at the safety issues of the vaccination schedules. But has Mr. Sheen really done his homework or is this just another example of the mercury militia exploiting a poorly informed celebrity to further their misguided agenda.
The age at which parents notice autism and the vaccines in question that would have caused autism are given before the age of 36 months. Their daughters are 4 and 3 years old. It is likely that if they were to get autism from a vaccination they would have gotten it by that age. It seems implausible that vaccinations given at this age would cause them to become autistic when given when they were 3 and 4 years old. Certainly his kids getting a DPT booster shot, which is given routinely at the age of 5, would not be an issue in their getting autism from a vaccine.
The UK has had autism prevelance increases that are similar to those in the United States. Yet there has only been one thimerosal containing vaccine, DPT, that was used there. The only change made in the UK was earlier administration of the three vaccines. I don't remember the exact age when the three vaccines were given in the UK pre-change and post-change but I do know in both cases all three vaccines were given before the age of one. This would mean that even if what the mercury militia says is true, vaccines given after the age of 1 are inconsequential for getting autism. The celebrity couple's children are substantially older than that, so there is no way that those two children could get autism from vaccines.
It is interesting to note that in my correspondence with Mark Geier, this supposed vaccine expert made a similar sort of error to Charlie Sheen. When I asked Dr. Geier how he explained the doubling of autism prevalence by birth years in the states regional center from 1970 to 1986 from 4/10,000 to 8/10,000 and then the increase from 12/10,000 in 1991 at a time when there was only one thimerosal containing vaccine he stated that uptake of DPT increased from 50% to 90% between 1970 and 1986 and that the number of shots increased from 3 to 5. It was never 3 shots before the age of 1. Geier provided no documentation for the increase in uptake. However, he does not explain why if there were such a huge increase in uptake why there was not along with the increase in autism there was not a corresponding decrease in pertussis which would have to have been of a much greater magnitude than the autism increase. Health records from various state agencies contradict this notion and show pertussis if anything was slightly on the rise during this time. Also the three to five shots argument is irrelevant because it would only be the three shots given before the age of one which would be relevant. The fifth shot is a booster shot given at age 5 which would be obviously inconsequential in causing autism. As far as I know this supposed vaccination expert who gives out such implausible facts is the only person to publish a study showing an association between thimerosal containing vaccines and autism, the rest of the literature refutes the association.
From reading the age of autism website and reading the link they gave to the TMZ entertainment news about the actors conflicts over their children, it would appear that at least one of shots Mr. Sheen is trying to prevent his daughters from getting is the DPT booster shot given at age 5 which would prevent their daughters from getting whooping cough. There are probably other shots as well he is trying to deny his children that could result in otherwise preventable childhood diseases and illnesses for his offspring.
It is sad enough that this poorly informed celebrity would endanger the welfare of his own daughters in such a manner. It is much worse that those who publish the age of autism website would exploit this tragedy in such a callous manner when it is clearly they and Mr. Sheen who are not doing their homework.
In one of their latest posts they laud actor Charlie Sheen who is trying to stop his ex-wife actress Denise Richards from vaccinating their daughters because of the evidence that vaccines cause autism. Sheen has stated he will sue if necessary to stop his ex-wife. The post goes on to further state that Charlie Sheen has done his homework in looking at the safety issues of the vaccination schedules. But has Mr. Sheen really done his homework or is this just another example of the mercury militia exploiting a poorly informed celebrity to further their misguided agenda.
The age at which parents notice autism and the vaccines in question that would have caused autism are given before the age of 36 months. Their daughters are 4 and 3 years old. It is likely that if they were to get autism from a vaccination they would have gotten it by that age. It seems implausible that vaccinations given at this age would cause them to become autistic when given when they were 3 and 4 years old. Certainly his kids getting a DPT booster shot, which is given routinely at the age of 5, would not be an issue in their getting autism from a vaccine.
The UK has had autism prevelance increases that are similar to those in the United States. Yet there has only been one thimerosal containing vaccine, DPT, that was used there. The only change made in the UK was earlier administration of the three vaccines. I don't remember the exact age when the three vaccines were given in the UK pre-change and post-change but I do know in both cases all three vaccines were given before the age of one. This would mean that even if what the mercury militia says is true, vaccines given after the age of 1 are inconsequential for getting autism. The celebrity couple's children are substantially older than that, so there is no way that those two children could get autism from vaccines.
It is interesting to note that in my correspondence with Mark Geier, this supposed vaccine expert made a similar sort of error to Charlie Sheen. When I asked Dr. Geier how he explained the doubling of autism prevalence by birth years in the states regional center from 1970 to 1986 from 4/10,000 to 8/10,000 and then the increase from 12/10,000 in 1991 at a time when there was only one thimerosal containing vaccine he stated that uptake of DPT increased from 50% to 90% between 1970 and 1986 and that the number of shots increased from 3 to 5. It was never 3 shots before the age of 1. Geier provided no documentation for the increase in uptake. However, he does not explain why if there were such a huge increase in uptake why there was not along with the increase in autism there was not a corresponding decrease in pertussis which would have to have been of a much greater magnitude than the autism increase. Health records from various state agencies contradict this notion and show pertussis if anything was slightly on the rise during this time. Also the three to five shots argument is irrelevant because it would only be the three shots given before the age of one which would be relevant. The fifth shot is a booster shot given at age 5 which would be obviously inconsequential in causing autism. As far as I know this supposed vaccination expert who gives out such implausible facts is the only person to publish a study showing an association between thimerosal containing vaccines and autism, the rest of the literature refutes the association.
From reading the age of autism website and reading the link they gave to the TMZ entertainment news about the actors conflicts over their children, it would appear that at least one of shots Mr. Sheen is trying to prevent his daughters from getting is the DPT booster shot given at age 5 which would prevent their daughters from getting whooping cough. There are probably other shots as well he is trying to deny his children that could result in otherwise preventable childhood diseases and illnesses for his offspring.
It is sad enough that this poorly informed celebrity would endanger the welfare of his own daughters in such a manner. It is much worse that those who publish the age of autism website would exploit this tragedy in such a callous manner when it is clearly they and Mr. Sheen who are not doing their homework.
Monday, June 9, 2008
asking Good morning america for equal time
This morning I watched good morning america for most of the show hoping to see the segment about the neurodiversity movement with ari neeman and kristina chew. It was not on. I hear that it will be on tomorrow morning and I will watch it then.
I have just contacted good morning America, telling them that I am an autistic person with an opposing viewpoint and I would like equal time, telling them my side of story and how much i hate my autism and what a seriously flawed movement neurodiversity is.
I realize I have a snowball's chance in hell of being able to rebut these people and tell the other side of the story which I think to be fair should be told but it was worth a shot. Well, like neurodiversity, and the parents who try to cure their kids autism with chelation and 40 hours a week of ABA I can cry tears of toasted snow also.
I have just contacted good morning America, telling them that I am an autistic person with an opposing viewpoint and I would like equal time, telling them my side of story and how much i hate my autism and what a seriously flawed movement neurodiversity is.
I realize I have a snowball's chance in hell of being able to rebut these people and tell the other side of the story which I think to be fair should be told but it was worth a shot. Well, like neurodiversity, and the parents who try to cure their kids autism with chelation and 40 hours a week of ABA I can cry tears of toasted snow also.
Questionmark Etiology: Ground Zero
Amongst some of my non-published writings, there is a 9,000 word essay that I wrote entitled Questionmark etiology: Ground Zero. This essay details the frustration I have had my entire life of wanting to know what caused my problems, more specifically my autism. I use the word "problems" rather than autism because this quest goes back to when I was 6 years old or younger before I had even heard of the term autism, let alone thinking i might have it or being diagnosed with it or being told of said diagnosis. This is not to be confused with a short fiction piece I wrote entitled "question mark etiology" at http://jonathans-stories.com/stories/qmark.html which deals with carpal tunnel syndrome and masturbation, two rather fascinating subjects in their own right (very big grin). This essay also deals with some of my experiences as the research subject of autism neuroscientist Eric Courchesne in some of his MRI studies. I have written a piece also which is on my web page, http://jonathans-stories.com/non-fiction/corc.html which details some of those experiences also.
I thought it might be interesting to summarize some of the points I wrote about in that essay which I wrote as a chapter of a non-fiction book I wrote a rough draft of. The Book's title is "Crying for Toasted Snow" because this is what I feel that parents of autistic children who expect their children to become typical kids through ABA, chelation and other treatments do. Complaining about things they cannot have. I believe this is also true of those in the neurodiversity movement who have the pipe dream of complete societal acceptance of everything involving autism and this solving everything, enabling autistics to function in the same manner as NTs. It comes from what is supposedly an old arab proverb, the discontended child cries for toasted snow. Also my essay on Bill Gates, Albert Einstein and Thomas Jefferson, http://www.jonathans-stories.com/non-fiction/undiagnosing.html is one of the chapters of this book.
In my essay, I write about how the fact I had "problems" was drilled into from age 5 and younger. I was seeing a psychoanalyst at the time. Psychoanalysis was the early intervention of choice for people with problems like mine in the late 1950s when I was 3 years old. My psychoanalyst had a rather interesting theory about the etiology of my problems. Since I had a sister who was 3 years younger than myself, she reasoned, at some point I must have seen her naked. I noticed that she was missing something that I had- a penis. She stated that I thought that my parents had cut off my sister's penis. Therefore I was worried that mine would be cut off as well and this was one of the reasons for losing my speech before I was 3 years old and my feces smearing and self-stimulatory and other autistic behaviors. This is referred to as castration anxiety in psychoanalysis. There is also its corollary, penis envy in women who end up on the analyst's couch.
Some years later, I was given a variety of psychologic tests including the Wechsler IQ test and the Bender-Gestalt test of visual motor perception. I had abnormal scores on these and this was indicative of some type of brain-damage.
In the summer of 1969 I saw the movie, "A change of habit" which dealt with an autistic child. This was the first time I had heard of the word "autistic" I was nearly 14 years old. The girl in the movie was 3 years old and had no speech, just I was told that I had no speech by both my parents and my psychoanalyst. I recovered my speech probably before I was 5. I asked my mother if this could be what I was autistic. My mother told me she had inquired about this possibility with some people and they rejected this notion. Not long after that another psychiatrist I was seeing as a teenager, after I stopped seeing my psychoanalyst, decided along with my parents that I had autism. But did labels like autism and brain damage tell me what specifically caused my problems, no. What area of the brain was dysfunctional in my case? What caused that dysfunction?
In the late 1980's I read an article in the L.A. times that part of the autism puzzle may have been solved. A researcher I had never heard of named Eric Courchesne had found in about 70% of autistics he had conducted MRI scans on had an area of the cerebellum that was smaller than in normal controls. These were lobules VI and VII of a part of the cerebellum called the vermis. I was absolutely intrigued. I wanted to know if this could be what caused my problems, damage to this part of the cerebellum. I contacted the Courchesne research lab. They were happy to find an autistic with intact intelligence to be a research subject. Nearly 20 years ago it was not thought there were anywhere near as many high functioning autistics of normal intelligence as there are today. I had the scan and I was told that I had this abnormality also, or at least the sizes of my cerebellar vermis lobules VI and VII were of average size for an autistic. The sizes of these lobules varied within the experimental group of autistics.
I was pleased with this relevation, but still it was not enough. I wanted to know more. I had read some stuff about the brain and its functioning. It seemed that it was very likely that autism was a problem involving the neurotransmitter norepinephrine. Also, an area of the cerebellum called the superior cerebellar penducle on which synapses coming from the dorsal tegmental bundle came from occurred. The dorsal tegmental bundle was one of the major brain tracts containing the neurotransmitter norepinephrine. I had read about the work of brain researcher James Olds who found that electrical brain stimulation of certain parts of the brain were reinforcing and some of these brain areas were referred to as "pleasure centers". I wondered if my self-stimulatory behaviors were due to something like this. Research on rats had shown that stimulation of the superior cerebellar peduncle was reinforcing. When the dorsal tegmental bundle was severed the rats continued to find stimluation to the superior cerebellar peduncle reinforcing. Could it be that norepinephrine was an inhibotory neurotransmitter and suppressed the urges of the superior cerebellar peduncle? This could be part of my problems. The few post-mortem autopsies of autistic brains showed lowered purkinje cell counts in the cerebellums of autistic persons. Norepinephrine and GABA are the only two neurotransmitters used by these neurons. This would increase evidence of norepinephrine involvement in the etiology of autism. I wondered could this be something worth looking into as an etiologic factor of autism and could MRI measurements of the superior cerebellar peduncles be taken in autistic subjects. I asked Dr. Courchesne about this. He said that it was an interesting theory. He stated that the cerebellar peduncles were only a few millimeters and too small to make measurements of in comparison to normal controls. I still think this is a hypothesis that might be worth pursuing and might be the cause of at least some autism. More scientific research might enlighten us.
Some years after I had my scan with the Courchesne lab. I was reading an article by researcher Joseph Piven that he believed Courchesne did not adequately control for age and sex differences between the autistic subjects and the control MRI scans. Due to budgetary limitations, the study that Courchesne published in the New England Journal of Medicine used hospital inpatients as controls. It would be too costly to find controls of comparable age and sex and perform MRI scans on them. Because the measurement techqniques were experimental there were no standard sizes of a cerebellar vermis for an adult man, adult woman, 12 year old boy, 10 year old girl, etc. It was quite possible that the smaller measurements in the autistics could have been an artifact of their being younger than the adult controls who might naturally have larger cerebellar vermi. This was a real disappointment. Of course I was an adult at the time, so maybe my having a smaller part of the cerebellar vermis could still mean something in terms of the etiology of my problems.
I am not sure, but i don't think that Courchesne's work has ever been replicated. My friend neuroscientist Matthew Belmonte, a former graduate student and protege of Eric Courchesne disagreed. He said there were several studies that replicated Courchesne's findings. He cited some examples. Most of these I have not read. One of the examples he cited though was of a Japanese neuroscientist named Hashimoto who published a study in the Journal of Autism and Developmental Disorders. I read the Hashimoto study and from my understanding of it, it would contradict what Matthew said. Hashimoto seemed to have measured the entire cerebellar vermis stating that it was abnormally small in autistic subjects. However, Courchesne's work had concentrated on just lobules VI and VII. There were ten lobules and only two of those ten were abnormally small in the autistic subjects. In one subject there was a smaller lobule VIII, though this was the only exception. So I don't think Hashimoto replicated Courchesne's work. I guess I will have to become more well read in the autism literature before I can make more determinations.
The final point is that my pursuits in finding out the exact etiology of my problems has been a tremendous disappoint. At age 52 I don't really understand anymore than I did at age 6.
I don't remember ever seeing my sister naked. Of course for castration anxiety to be the cause of my problems I would have had to see her naked right after the time she had been delivered and was taken home from the hospital. But so far, since I don't know what brain physiology mechanisms are involved, I can't help but wondering if maybe castration anxiety could actually be at the root of my problems, but I guess I will never know.
I thought it might be interesting to summarize some of the points I wrote about in that essay which I wrote as a chapter of a non-fiction book I wrote a rough draft of. The Book's title is "Crying for Toasted Snow" because this is what I feel that parents of autistic children who expect their children to become typical kids through ABA, chelation and other treatments do. Complaining about things they cannot have. I believe this is also true of those in the neurodiversity movement who have the pipe dream of complete societal acceptance of everything involving autism and this solving everything, enabling autistics to function in the same manner as NTs. It comes from what is supposedly an old arab proverb, the discontended child cries for toasted snow. Also my essay on Bill Gates, Albert Einstein and Thomas Jefferson, http://www.jonathans-stories.com/non-fiction/undiagnosing.html is one of the chapters of this book.
In my essay, I write about how the fact I had "problems" was drilled into from age 5 and younger. I was seeing a psychoanalyst at the time. Psychoanalysis was the early intervention of choice for people with problems like mine in the late 1950s when I was 3 years old. My psychoanalyst had a rather interesting theory about the etiology of my problems. Since I had a sister who was 3 years younger than myself, she reasoned, at some point I must have seen her naked. I noticed that she was missing something that I had- a penis. She stated that I thought that my parents had cut off my sister's penis. Therefore I was worried that mine would be cut off as well and this was one of the reasons for losing my speech before I was 3 years old and my feces smearing and self-stimulatory and other autistic behaviors. This is referred to as castration anxiety in psychoanalysis. There is also its corollary, penis envy in women who end up on the analyst's couch.
Some years later, I was given a variety of psychologic tests including the Wechsler IQ test and the Bender-Gestalt test of visual motor perception. I had abnormal scores on these and this was indicative of some type of brain-damage.
In the summer of 1969 I saw the movie, "A change of habit" which dealt with an autistic child. This was the first time I had heard of the word "autistic" I was nearly 14 years old. The girl in the movie was 3 years old and had no speech, just I was told that I had no speech by both my parents and my psychoanalyst. I recovered my speech probably before I was 5. I asked my mother if this could be what I was autistic. My mother told me she had inquired about this possibility with some people and they rejected this notion. Not long after that another psychiatrist I was seeing as a teenager, after I stopped seeing my psychoanalyst, decided along with my parents that I had autism. But did labels like autism and brain damage tell me what specifically caused my problems, no. What area of the brain was dysfunctional in my case? What caused that dysfunction?
In the late 1980's I read an article in the L.A. times that part of the autism puzzle may have been solved. A researcher I had never heard of named Eric Courchesne had found in about 70% of autistics he had conducted MRI scans on had an area of the cerebellum that was smaller than in normal controls. These were lobules VI and VII of a part of the cerebellum called the vermis. I was absolutely intrigued. I wanted to know if this could be what caused my problems, damage to this part of the cerebellum. I contacted the Courchesne research lab. They were happy to find an autistic with intact intelligence to be a research subject. Nearly 20 years ago it was not thought there were anywhere near as many high functioning autistics of normal intelligence as there are today. I had the scan and I was told that I had this abnormality also, or at least the sizes of my cerebellar vermis lobules VI and VII were of average size for an autistic. The sizes of these lobules varied within the experimental group of autistics.
I was pleased with this relevation, but still it was not enough. I wanted to know more. I had read some stuff about the brain and its functioning. It seemed that it was very likely that autism was a problem involving the neurotransmitter norepinephrine. Also, an area of the cerebellum called the superior cerebellar penducle on which synapses coming from the dorsal tegmental bundle came from occurred. The dorsal tegmental bundle was one of the major brain tracts containing the neurotransmitter norepinephrine. I had read about the work of brain researcher James Olds who found that electrical brain stimulation of certain parts of the brain were reinforcing and some of these brain areas were referred to as "pleasure centers". I wondered if my self-stimulatory behaviors were due to something like this. Research on rats had shown that stimulation of the superior cerebellar peduncle was reinforcing. When the dorsal tegmental bundle was severed the rats continued to find stimluation to the superior cerebellar peduncle reinforcing. Could it be that norepinephrine was an inhibotory neurotransmitter and suppressed the urges of the superior cerebellar peduncle? This could be part of my problems. The few post-mortem autopsies of autistic brains showed lowered purkinje cell counts in the cerebellums of autistic persons. Norepinephrine and GABA are the only two neurotransmitters used by these neurons. This would increase evidence of norepinephrine involvement in the etiology of autism. I wondered could this be something worth looking into as an etiologic factor of autism and could MRI measurements of the superior cerebellar peduncles be taken in autistic subjects. I asked Dr. Courchesne about this. He said that it was an interesting theory. He stated that the cerebellar peduncles were only a few millimeters and too small to make measurements of in comparison to normal controls. I still think this is a hypothesis that might be worth pursuing and might be the cause of at least some autism. More scientific research might enlighten us.
Some years after I had my scan with the Courchesne lab. I was reading an article by researcher Joseph Piven that he believed Courchesne did not adequately control for age and sex differences between the autistic subjects and the control MRI scans. Due to budgetary limitations, the study that Courchesne published in the New England Journal of Medicine used hospital inpatients as controls. It would be too costly to find controls of comparable age and sex and perform MRI scans on them. Because the measurement techqniques were experimental there were no standard sizes of a cerebellar vermis for an adult man, adult woman, 12 year old boy, 10 year old girl, etc. It was quite possible that the smaller measurements in the autistics could have been an artifact of their being younger than the adult controls who might naturally have larger cerebellar vermi. This was a real disappointment. Of course I was an adult at the time, so maybe my having a smaller part of the cerebellar vermis could still mean something in terms of the etiology of my problems.
I am not sure, but i don't think that Courchesne's work has ever been replicated. My friend neuroscientist Matthew Belmonte, a former graduate student and protege of Eric Courchesne disagreed. He said there were several studies that replicated Courchesne's findings. He cited some examples. Most of these I have not read. One of the examples he cited though was of a Japanese neuroscientist named Hashimoto who published a study in the Journal of Autism and Developmental Disorders. I read the Hashimoto study and from my understanding of it, it would contradict what Matthew said. Hashimoto seemed to have measured the entire cerebellar vermis stating that it was abnormally small in autistic subjects. However, Courchesne's work had concentrated on just lobules VI and VII. There were ten lobules and only two of those ten were abnormally small in the autistic subjects. In one subject there was a smaller lobule VIII, though this was the only exception. So I don't think Hashimoto replicated Courchesne's work. I guess I will have to become more well read in the autism literature before I can make more determinations.
The final point is that my pursuits in finding out the exact etiology of my problems has been a tremendous disappoint. At age 52 I don't really understand anymore than I did at age 6.
I don't remember ever seeing my sister naked. Of course for castration anxiety to be the cause of my problems I would have had to see her naked right after the time she had been delivered and was taken home from the hospital. But so far, since I don't know what brain physiology mechanisms are involved, I can't help but wondering if maybe castration anxiety could actually be at the root of my problems, but I guess I will never know.
Sunday, June 8, 2008
acceptance of John Best: A dilemma for neurodiversity
Many autism afficianados in the blogosphere have heard of the notorious John Best, the pontificator of angry invective about autism really being mercury poisoining and chelation being the cure. Also the pontificator of anti-neurodiversity diatribes, more drastic than yours truly, one of the few bloggers to have the audacity to write unfavorable things about that sacred cow to many, neurodiversity.
I don't agree with Best about mercury causing autism and chelation being the cure. I don't really approve of a lot of his harsh tactics either. However I have to admit to sometimes taking a guilty pleasure of reading his blog and occasionally posting comments there to get the anger I have towards the neurodiversity movement out of my system as well as the fact the blog provides a sort of Three Stooges slapstick entertainment with all the back and forth bickering between Best, his entourage who usually post anonymously and may be Best themselves in some cases, and his neurodiversity detractors who often don't seem to want to turn the other cheek.
Lately the controversy involving the hating autism blog has reached a pinnacle of sorts with someone posting the address of one of neurodiversity's poster children, the famous Amanda Baggs. Amanda has often been a subject of the hating autism blog as Best claims she is a fraud pretending to be autistic for some reason or another, though i don't know if Amanda is a fraud or not.
I must agree that publishing her address and using this as a back-handed threat to be violent towards her was wrong and I would delete a post like that if it were ever posted on my blog.
Though I don't know if Baggs and her friend Laura are autistic I do know that hate begets hate and that might be a factor in people's response to Amanda. On Autistics.org, the website of her friend Laura and herself is a nasty abortion type cartoon showing an aborted autistic fetus with CAN written on a trashcan in which the fetus is being deposited with the caption "the real meaning of autism prevention" For that reason, I was the second person to post a response to the blog thread Best started talking about their complaint to blogger about the threat. I must admit I do have some misgivings about my comment, because, as I said before, I don't think there was a justification for publishing Amanda's address and suggesting in any way someone commit a violent act upon her.
John Best defends his bad behavior on his blog claiming that he knows that autism can be cured via chelation and that neurodiversity are engaging in lies and propaganda so that people will not know their children can be cured. However, another explaination for Mr. Best's behavior which has been given by some of his detractors is that his behavior indicates that he himself is somewhere on the autism spectrum, this is the reason for his obsessions and perservations and his cybertantrums.
Neurodiversity proponents for the most part seem to claim that autistics need acceptance and not a cure. Michelle Dawson in her essay the misbehavior of behaviorists even suggests that a sister wanting to cure her brother of his autism which causes her to be kept awake all night, causes him to scratch her and destroy her property is some sort of intolerant bigot for wishing this.
One must wonder if John Best is truly on the spectrum are neurodiversity advocates intolerant bigots for insulting him on his own blog, complaining about his actions to blogger and villifying him on their own blogs. And in the case of autism diva, Joseph of the natural variation blog and possibly some of the other neurodiversity blog owners banning him outright from particpating in the comments section of their blogs. Could it be that these preachers of acceptance rather than cure are not accepting John Best, assuming there is any possibility at all that Best himself is one of their own, even if possibly having a "forme fruste" of the condition or a shadow syndrome of autism?
I really wonder how any follower of neurodiversity can reconcile this. They should either acknowledge at least the possibility that Best is somewhere on the spectrum and accept him, not insult him, allow him to post in their blogs or perhaps they should re-examine some of the cognitive dissonance of their own philosophy.
I don't agree with Best about mercury causing autism and chelation being the cure. I don't really approve of a lot of his harsh tactics either. However I have to admit to sometimes taking a guilty pleasure of reading his blog and occasionally posting comments there to get the anger I have towards the neurodiversity movement out of my system as well as the fact the blog provides a sort of Three Stooges slapstick entertainment with all the back and forth bickering between Best, his entourage who usually post anonymously and may be Best themselves in some cases, and his neurodiversity detractors who often don't seem to want to turn the other cheek.
Lately the controversy involving the hating autism blog has reached a pinnacle of sorts with someone posting the address of one of neurodiversity's poster children, the famous Amanda Baggs. Amanda has often been a subject of the hating autism blog as Best claims she is a fraud pretending to be autistic for some reason or another, though i don't know if Amanda is a fraud or not.
I must agree that publishing her address and using this as a back-handed threat to be violent towards her was wrong and I would delete a post like that if it were ever posted on my blog.
Though I don't know if Baggs and her friend Laura are autistic I do know that hate begets hate and that might be a factor in people's response to Amanda. On Autistics.org, the website of her friend Laura and herself is a nasty abortion type cartoon showing an aborted autistic fetus with CAN written on a trashcan in which the fetus is being deposited with the caption "the real meaning of autism prevention" For that reason, I was the second person to post a response to the blog thread Best started talking about their complaint to blogger about the threat. I must admit I do have some misgivings about my comment, because, as I said before, I don't think there was a justification for publishing Amanda's address and suggesting in any way someone commit a violent act upon her.
John Best defends his bad behavior on his blog claiming that he knows that autism can be cured via chelation and that neurodiversity are engaging in lies and propaganda so that people will not know their children can be cured. However, another explaination for Mr. Best's behavior which has been given by some of his detractors is that his behavior indicates that he himself is somewhere on the autism spectrum, this is the reason for his obsessions and perservations and his cybertantrums.
Neurodiversity proponents for the most part seem to claim that autistics need acceptance and not a cure. Michelle Dawson in her essay the misbehavior of behaviorists even suggests that a sister wanting to cure her brother of his autism which causes her to be kept awake all night, causes him to scratch her and destroy her property is some sort of intolerant bigot for wishing this.
One must wonder if John Best is truly on the spectrum are neurodiversity advocates intolerant bigots for insulting him on his own blog, complaining about his actions to blogger and villifying him on their own blogs. And in the case of autism diva, Joseph of the natural variation blog and possibly some of the other neurodiversity blog owners banning him outright from particpating in the comments section of their blogs. Could it be that these preachers of acceptance rather than cure are not accepting John Best, assuming there is any possibility at all that Best himself is one of their own, even if possibly having a "forme fruste" of the condition or a shadow syndrome of autism?
I really wonder how any follower of neurodiversity can reconcile this. They should either acknowledge at least the possibility that Best is somewhere on the spectrum and accept him, not insult him, allow him to post in their blogs or perhaps they should re-examine some of the cognitive dissonance of their own philosophy.
Friday, June 6, 2008
Bullying and Aspergers: Some needed changes to the DSM
One of the proposals that some neurodiversity advocates make in terms of what they believe to be necessary changes to looking at autism in a different light is rewriting the DSMIV-R, which I think soon will be the DSMV if it is not already. The proposal is to eliminate autism entirely as a category in the psychiatric manual. They believe it is insulting to pathologize autism in any way. They use the analogy of homosexuality being considered a disorder in the 1960s and then being removed from the DSM. I believe the analogies between the two are poor. Homosexuality certainly does not cause the individual to be dysfunctional in society the way autism does. I can't believe that even the staunchest neurodiversity advocate would claim that any autistic could function normally in society. Be that as it may, perhaps changing the DSM in some other ways might not be such a bad idea.
I was reading Michelle Dawson's TMOB comment board and was intrigued by the following comment from Michelle:
E.g., Dr Shattuck trots out the common and stupefying premise that when autistics are bullied, this is evidence of autistics'--not bullies'-- inappropriate social behaviour. I nearly turned the radio off.Later Dr Shattuck also states that there should be criminal penalties for those who deliberately take advantage of developmentally disabled people. This is interesting, but there is no suggestion that bullies and harassers (etc.) and others who take advantage of autistics, etc., need treatment for their grossly inappropriate social behaviour. Instead, Dr Shattuck wants a lot of treatment for autistics who get bullied and taken advantage of, presumably so we become less autistic or not autistic at all (this being the purpose of autism treatment).
Though Michelle and I have had our differences in the past and have locked figurative horns on some matters, I believe in this instance Michelle has some valid points. However the argument Michelle seems to be espousing is treatment of autistics and non-treatment of bullies versus treatment of bullies and non-treatment of autistics. However, why can't there be a third scenario where not only is autism considered a pathologic condition but so is bullying amongst children. I don't believe there is any reason there has to be mutual exclusion from considering either one condition or the other pathologic. One of the arguments against mainstreaming special education students is that they will be picked on by bullies in mainstream schools. Of course it is never recommended that the bully be disciplined or sent to a special education school. Also, people who espouse this argument have probably never been special education students themselves and don't know the same things that this eight year veteran of special education knows, that special ed students do bully each other at times.
So my suggestion is this. Not only do we keep autism as a DSM category but add bullying as well. Though I am not sure what treatment would turn a bullier into a non-bully, assuming there was one and the criminal charges that Dr. Shattuck recommends, one of the conditions of sentencing could be that a bully is referred to a psychiatrist or appropriate doctor for treatment under the DSM. Though such a treatment may be pie-in-the-sky dreaming, I believe it would be a good idea to add bullying into the DSM category so that this behavior can be considered pathologic and the consciousness of person's would be raised in terms of the problems that autistic children who are often bullied both in and out of mainstream schools have to endure.
I have had to endure tremendous bullying, have been beaten up and even had my car vandalized as a high school teen. Of course not all kids are like this. There is no question that the most extreme bullies had some sort of psychiatric issues and would need help if such help were available. Just as people arrested for DUI have to sometimes undergo counseling as a condition for their probation perhaps bullies could also.
This does not mean of course that autistic persons should not be made less autistic or even non-autistic if the option is available. Autism presents many challenges for the person outside of having to contend with bullies.
Another needed change to the DSM in my opinion is either eliminating Asperger's syndrome alltogether or at least making it its own separate category and not considering it as part of the autism spectrum. The Autism Self Advocacy Network is not called the Asperger's Self Advocacy Network. Ari Neeman, the young stalwart who runs this organization never had a speech delay, one of the DSM indicators of autism. He was not diagnosed with Asperger's until he was 12. He is now 20 years old. At the time Ari was 7, he would not have been diagnosable as autistic under the criteria which was in existence at that time. This is probably also true for many other neurodiversity advocates who in some instance seem to want to speak for all autistics and protest a non-existent cure for autism. I had a speech delay before the age of 3, so I guess according to DSM criteria I would be considered autistic rather than asperger's, though I suppose I have some commonality with Asperger's in that I am clumsy and score relatively well on the verbal portion of Wechsler IQ tests and poorly on the performance part. The inclusion of Asperger's also gives the false perception that 1 out of 150 persons in the U.S. have conditions that are in any way analogous to people on the lower end of the spectrum (this could even include myself in comparison to many if not most neurodiversity adherents who claim to be autistic).
For all of these reasons I recommend changing the DSM as soon as possible. Include bullying, either exclude Asperger's or make it separate from autism.
I was reading Michelle Dawson's TMOB comment board and was intrigued by the following comment from Michelle:
E.g., Dr Shattuck trots out the common and stupefying premise that when autistics are bullied, this is evidence of autistics'--not bullies'-- inappropriate social behaviour. I nearly turned the radio off.Later Dr Shattuck also states that there should be criminal penalties for those who deliberately take advantage of developmentally disabled people. This is interesting, but there is no suggestion that bullies and harassers (etc.) and others who take advantage of autistics, etc., need treatment for their grossly inappropriate social behaviour. Instead, Dr Shattuck wants a lot of treatment for autistics who get bullied and taken advantage of, presumably so we become less autistic or not autistic at all (this being the purpose of autism treatment).
Though Michelle and I have had our differences in the past and have locked figurative horns on some matters, I believe in this instance Michelle has some valid points. However the argument Michelle seems to be espousing is treatment of autistics and non-treatment of bullies versus treatment of bullies and non-treatment of autistics. However, why can't there be a third scenario where not only is autism considered a pathologic condition but so is bullying amongst children. I don't believe there is any reason there has to be mutual exclusion from considering either one condition or the other pathologic. One of the arguments against mainstreaming special education students is that they will be picked on by bullies in mainstream schools. Of course it is never recommended that the bully be disciplined or sent to a special education school. Also, people who espouse this argument have probably never been special education students themselves and don't know the same things that this eight year veteran of special education knows, that special ed students do bully each other at times.
So my suggestion is this. Not only do we keep autism as a DSM category but add bullying as well. Though I am not sure what treatment would turn a bullier into a non-bully, assuming there was one and the criminal charges that Dr. Shattuck recommends, one of the conditions of sentencing could be that a bully is referred to a psychiatrist or appropriate doctor for treatment under the DSM. Though such a treatment may be pie-in-the-sky dreaming, I believe it would be a good idea to add bullying into the DSM category so that this behavior can be considered pathologic and the consciousness of person's would be raised in terms of the problems that autistic children who are often bullied both in and out of mainstream schools have to endure.
I have had to endure tremendous bullying, have been beaten up and even had my car vandalized as a high school teen. Of course not all kids are like this. There is no question that the most extreme bullies had some sort of psychiatric issues and would need help if such help were available. Just as people arrested for DUI have to sometimes undergo counseling as a condition for their probation perhaps bullies could also.
This does not mean of course that autistic persons should not be made less autistic or even non-autistic if the option is available. Autism presents many challenges for the person outside of having to contend with bullies.
Another needed change to the DSM in my opinion is either eliminating Asperger's syndrome alltogether or at least making it its own separate category and not considering it as part of the autism spectrum. The Autism Self Advocacy Network is not called the Asperger's Self Advocacy Network. Ari Neeman, the young stalwart who runs this organization never had a speech delay, one of the DSM indicators of autism. He was not diagnosed with Asperger's until he was 12. He is now 20 years old. At the time Ari was 7, he would not have been diagnosable as autistic under the criteria which was in existence at that time. This is probably also true for many other neurodiversity advocates who in some instance seem to want to speak for all autistics and protest a non-existent cure for autism. I had a speech delay before the age of 3, so I guess according to DSM criteria I would be considered autistic rather than asperger's, though I suppose I have some commonality with Asperger's in that I am clumsy and score relatively well on the verbal portion of Wechsler IQ tests and poorly on the performance part. The inclusion of Asperger's also gives the false perception that 1 out of 150 persons in the U.S. have conditions that are in any way analogous to people on the lower end of the spectrum (this could even include myself in comparison to many if not most neurodiversity adherents who claim to be autistic).
For all of these reasons I recommend changing the DSM as soon as possible. Include bullying, either exclude Asperger's or make it separate from autism.
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