Monday, November 30, 2009

Stephanie Lynn Keil missed by ND pollsters

I see that Stephanie Lynn Keil of the grand illusion blog has written a new post about how she disagrees with neurodiversity and believes that a cure for autism would be a good thing. I applaud Stephanie for doing this because as we find a growing number of persons on the spectrum who say they desire a cure we are disputing the neurodiversity contention espoused by Mike Carley, Dawn Prince-Hughes, Harry Williams (Socrates), Alex Plank and others that "most autistics don't want to be cured". Stephanie also shows great courage in signing (what I am pretty certain at least) her real name to a post stating that she wishes there could be a cure for autism. From my own personal experience (and I suspect Stephanie can attest to this also) anyone on the spectrum who is both high functioning and courageous enough to refute the ND line is vilified, bullied and harassed. Neurodiversity also has a "psychologist" (masters degree level) David Andrews who will start swearing at anyone who refutes the ND line in a blog comment. He delights in calling them "shite" or "tosspot" or any of the other vulgar names he can think of. It is quite frightening to me that this individual is allowed to work with autistic persons in any sort of clinical setup.

Neurodiversity not only operates by abusive name-calling but by disingenuous spin as well. It is understandable that any pro-cure autistic might be frightened of incurring the wrath of these vicious hatemongers and would not dare publicly state on the internet that they wish to be cured of this condition. One other problem is that many of persons afflicted are too impaired to blog and refute neurodiversity's nonsense. For example, Jon Shestack, father of Dov Shestack states that his son wants to be cured. However, Dov is nonverbal and probably incapable of refuting NDs nonsense or participating in their skewed polls. The same is true of John Belmonte, brother of autism brain researcher Matthew Belmonte. John B. in his 40s, has never spoken, but he has a limited ability to communicate using either FC or some sort of augmented communication or both. He has stated to his brother that he wishes to be cured of his autism.

What of the ND pollsters who state that their "scientific polls" prove that most autistics don't want to be cured. That autism speaks and other procure organizations wish to force a cure on those who don't want one (let alone the phony arguments about eugenic abortions)?

I could have gone to Wasilla, Alaska and taken a poll there on who the American people wished to be president of the United States in the 2008 election. I could have additionally gone to Biloxi, Mississippi and gotten additional poll numbers. It is likely that at least 99% of the poll participants would have stated they supported the McCain-Palin ticket (which lost). My poll would have been as scientific as neurodiversity's poll on whether or not autistics desire a cure.

Thank you, Stephanie, for publicly stating your convictions and not allowing ND to get away with their disingenuous spin. However, be prepared for a barrage of insults including the term "house autistic". Also, a few profane words from David Andrews may come your way.

Wednesday, November 25, 2009

Do Autism Speaks' assets belong to neurodiversity or ASAN?

As regular readers of this blog know, in my last post before this I wrote about ASAN's latest protest against Autism Speaks latest fundraiser in NYC, questioning on what impact they may or may n0t have had on AS. I also wrote about Marc Rosen's interesting take that ASAN's demonstration was a success. I commented on the inconsistencies of neurodiversity's claiming that no one should support autism speaks by donating money to them or in Jerry Seinfeld's case, performing as an entertainer for them to help them raise funds, yet having no problem at all accepting the half a million dollar grant that their scientific representative Laurent Mottron and his factotum Michelle Dawson received. Michelle Dawson's response to why she continued to work with the Mottron group and other AS funded researchers was "science isn't politics". I thought this was an absurd response. However, now, it seems quite sane compared to a response some character named "Charles" made on Marc Rosen's comments section in his blog or examiner article or whatever it was. Charles responds to my query as follows:

We condemn Autism Speaks because of its overall position and actions. We -- neurodiversity/autistic rights advocates, or whatever you want to call us -- do not condemn 100% of what Autism Speaks does. To do so would be very difficult to defend and indicative of prejudice. No organization, not even the worst of them, is 100% bad. Acknowledging such is not hypocrisy or a conflict of interests. Any monies channeled through Autism Speaks never belonged to them in the first place. It's charity, grants, etc., raised on the backs of Autistic people, and as such, it is rightfully OURS to direct as we see fit. If Autism Speaks sometimes happens to direct some of that money to the right places, (which places are right is a separate issue), our position against Autism Speaks does not require that we condemn that. If Autism Speaks did not exist, those who deserve funding would still get it. Autism Speaks does not create money; they merely GATHER it.

What does Charles mean by "ours"? Does he mean all autistic persons on the planet, myself included? Then does he have a right to speak for me? It sort of is reminiscent of Harold Doherty's concept of the royal we. Assuming there has been no increase in prevalence in autism and there are more autistic adults than children, we can still presume that perhaps as many of one-third of autistic persons have not reached their majority and legally their parents can make monetary and other decisions for them. Does this include them? Does this include nonverbal autistic adults such as John Belmonte who are not in a position to communicate how this money is spent, possibly others who may be under a conservatorship? However, since Alex Plank, Dawn Prince-Hughes, Michael John Carley and others have claimed that "most autistics don't want to be cured" when there is no evidence whatsoever to back up that contention, does Charles speak for all or most autistics or is he speaking for neurodiversity? Or perhaps more specifically he is speaking for ASAN. He seems to think that all of the millions of assets of autism speaks. Perhaps even the multimillion dollar fortune of Bob and Suzanne Wright themselves belongs to ND or maybe even just ASAN to spend as they see fit.

One can even delve further into the matter by examining whether just because the word "autistic" is used in fundraising whether or not this even applies to persons like Ari Ne'eman, Marc Rosen or Charles. Before there were changes in the diagnostic criteria for autism Ari Ne'eman would not have been diagnosed as having autism since he had no speech delay and was in fact able to name various types of dinosaurs at age two. Had there been no change. Ne'eman's diagnosis would still be ADHD. Most of the parents and others who are involved with autism speaks have persons whose clinical picture is most likely different from Ne'eman's and other ASAN members. They are persons who are (or were at one time) nonverbal. Can't care for themselves and have problems that are not like probably most ND advocates. In spite of Ne'eman's slogan, nothing about us without us, the things that AS fundraises are probably not about him and other ND's so perhaps an argument could be made that there is nothing wrong with it being done without him and his ilk. So perhaps the collective "ours" does not even apply to Charles and whomever else he is referring to.

I still remember the statement of one of my readers, Roger Kulp, who stated that Neurodiversity wanted to take over autism speaks by infiltration and a smile comes to my face. Is Charles recommending that neurodiversity engage in some sort of 1917 style Bolshevik revolution where there is a communist takeover of AS and they can just take the assets of autism speaks as the communist thugs in Russia did with the Czar's fortune? Does he believe that the federal government has a duty to seize the assets of autism speaks and give it to Ari Ne'eman and himself and others? Sort of like Robin Hood perhaps. The statement certainly smacks of communism and all of the atrocities that have happened in Lenin's or Stalin's Russia or other iron curtain countries, or in Red China, where everything belongs to "the people".

Particularly intriguing is his statement that autism speaks does not create money, they gather it. Then aside from the U.S. government, who else creates money in the U.S. (excluding illegal counterfeiters of course)? This means Microsoft, IBM, Union oil and Bank of America and even the mom and pop grocery store down the street gather money. So, does this money just belong to the people who voluntarily did business with those places?

The Wrights worked hard to obtain their capital and to build autism speaks as well as the mergers with CAN and NAAR. Even though there may have been misleading advertising on autism speaks' part to obtain the funds, as far as I can tell they did nothing illegal. All of the persons who donated money, went on walks or went to the Seinfeld/Springstein event did so voluntarily. Why does not autism speaks have the right to spend the money how they see fit? If anyone does not like how autism speaks spends their money, they don't have to donate or accept services provided by AS funds or a scientist does not have to accept funding from AS either. I doubt that Charles or any of his other collective "ours" whomever that might be has donated a dime to AS.

Where does Charles (and possibly other ASAN members) get the idea that the money somehow belongs to a certain collective of persons, apparently as far as I can tell the ND movement and no one else? I wonder if any readers of autism's gadfly agree with Charles that the assets of autism speaks rightfully belong to neurodiversity or ASAN. In my opinion they do not. However, I welcome others opinion on the matter.

Friday, November 20, 2009

Jerry Seinfeld and AS: No news is good news

In the no news is good news department an anonymous reader of autism's gadfly was wondering why there was no news about the ASAN protest of autism speaks latest fund raiser which included musician Bruce Springstein and well-known comedian Jerry Seinfeld helping to raise funds. He wrote a comment inquiring about this. He wrote another follow-up comment stating that a whopping 15 persons from ASAN showed up to demonstrate against the fundraiser according apparently to a twitter feed that ASAN has. However in what seems to me to be a strange take on the matter, ASAN member Marc Rosen called the protest a success

We can see one of them being rather antagonistic to Mr. Seinfeld:

We see in a recent update from AS that they managed to raise 1.7 million dollars from this gala event, in spite of the 15 ASAN protestors.

Anyone remember the old philosophical question about if a tree falls in the forest a thousand miles away from anyone does it make a sound?

Addendum: I pointed out to ASAN's Marc Rosen that they were only 15 persons as opposed to the 1.7 million that AS manage to raise from this event and the lack of sound from a tree no one hears being analogous to how effective their protest was, as well as their inconsistencies in supporting Laurent Mottron when he accepted funding from AS, yet instead of protesting Dr. Mottron, they have lauded the research of he and his associates that the organization they protest fundraises. I believe this is an inconsistency. Rosen responded by stating that if I had nothing useful to say that he would delete my comments and that I should save it for my blog and overbearing mother.

So we see, again ASAN is an organization like other ND proponents who are trying to bring back the Bettelheim era, having to stoop to insulting one's mother because they have nothing productive to say and can't refute anything I say. Marc Rosen is so typical of the ND movement, just engaging in censorship of anyone who posts a comment they disagree with. Apparently ASAN loves to dish it out but they can't take it.

Friday, November 13, 2009

autistics bullied: where are ASAN and Neurodiversity?

I see that there is a a new article out that discusses one of the problems of growing up autistic, being bullied. Bullying was a real problem for me as a child. I think most children with a developmental disability will attest to the fact that they had to endure incredible bullying. Of course very little is done about bullying and no one wants to include bullying as a diagnostic category in the DSM as they do autism. There are no segregated special ed schools for bullies and no federal mandate that bullies deserve a free and appropriate education away from handicapped children who are bullied.

Though I have had my differences with Michelle Dawson in the past, one time she did write something about bullying on her TMOB comment board which I agreed with. I wrote an article on my website giving Dawson's ideas a shout out and giving my own take on the matter.

One young angry member of neurodiversity has argued in the past that a cure for autism should not be found because NT children are such bullies and these are the type of persons who should not be emulated.

Other than these comments as far as I know, ASAN nor any other member of the ND movement has said anything about bullies or complained about bullying. This is surprising in light of the fact that ND proponents have consistently claimed that their movement is about human rights of persons with autism and similar disabilities. I know that they don't consider the right to treatment or the right not to be disabled a human right. However, one wonders why not being bullied is apparently not considered a human right by neurodiversity in general and ASAN in particular.

I see that ASAN spends the bulk of their time protesting autism speaks, claiming that they are only in existence to get rid of autistic persons, to insult them and urging boycotts of autism speaks and organizations such as toys 'r' us or Lindt chocolates who have supported AS in the past. Yet they apparently have no problem with Laurent Mottron's acceptance of half a million bucks from this organization.

Before I read the recent article about bullying, I was sort of curious why they spent so much time on autism speaks and apparently never organized demonstrations against the Judge Rottenberg center and similar organizations. For anyone not in the know, the Judge Rottenberg Center (formerly Behavior Research Institute) is a place where children are physically hit and electric shocked. As far as I know ASAN has never organized a demonstration or protest outside of the JRC the way they have at autism speaks walks. Apparently they don't feel that not being physically abused by these people is one of the human rights neurodiversity crusades for.

Now, it seems strange that Ari Ne'eman and his cronies have never, as far as I know, said one word against bullying. They have never done anything or attempted to address the problem of bullying, I wonder why.

Perhaps one reason is that a good number of members of the ND movement are bullies themselves. They have been abusive to me in the past when my only offense was saying I hate my autism and wish there could be a cure or scientific treatment. They have called me quisling, house autistic, sworn at me and insulted my parents. It is a good bet that they bully other people and parents also. I realize the likely explanation for this is that many of them were bullied themselves as children due to having autism or perhaps for other reasons. They ended up emulating the behaviors of those who victimized them.

Perhaps these are the reasons that ASAN and neurodiversity have been silent on the subject of bullying.

Tuesday, November 10, 2009

handwriting problems in autistic children

I have seen that a new study has come out documenting handwriting problems in autistic children. I have had great difficulties with handwriting and printing. Contrary to some published reports of autistic children having superior scores on the block design subtest of the Wechsler performance IQ test, I score in the far subnormal range on this.

Also, some persons with autism do have very superior fine motor coordination skills such as Stephen Wiltshire and the lesser known Stephanie Lynn Keil who is also a talented artist.

I had to have extra help one on one tutoring for handwriting for years as a small child. I remember one tutor could only tutor me during recess or the school felt it was the only time they could give me the extra help. While the other kids enjoyed a recess break, I had to spend time being tutored in handwriting.

I later went to after school to a place where they claimed their educational methods remediated perceptual impairments that caused my handwriting problems (as well as perceptual problems that caused dyslexia which I don't have). This was another example of a pie-in-the-sky special education promise that turned out in reality to be shit-from-the-sewer. They did not help at all.

I recently wrote a blog post inquiring about fine motor coordination problems. The diagnosis given to me before the autism diagnosis was "fine motor coordination problem".

The article states that they got a standard score on the perceptual part of an IQ test. I don't know if this means they had normal scores in block design, etc.

So I am still interested in reading about handwriting and motor impairments in autistic children. I guess this shows that while autistics may have some symptoms in common that not all of them are alike and different conditions are labeled "autism".

I am not sure there is anyway I will ever be able to know exactly how my brain was damaged and what the neuroanatomical correlates are that cause the self-stimulatory movements and handwriting problems and all else that is wrong with me.

Still interested in reading this article and finding out about handwriting problems in others.

Wednesday, November 4, 2009

Some neurodiversity Potpourri

I see that Joseph of the autism natural variation blog has decided based on one published report based on the statuses of only 19 people that adults with autism don't have problems with employment nor with marriage.

Whatever comments you want to make on the merits or lack of merits in the recent NHS report on autistic adults, the fact of the matter was it was only based on 19 people, count 'em 19. The authors of the reports extrapolated this number 19 to the greater population claiming that 1% of adults in the UK in private households have autism. However this was just a guess based on mathematical projections.

I will concede I don't know as much about math and statistics as Joseph (having just had one elementary statistics course in a community college more than 30 years ago). However, I find it hard to believe that 19 persons even comes close to a statistically significant number on which to predicate employment and marriage trends in a country of millions of adults where supposedly 1% of them have autism.

In the past Joseph presented some statistic saying that 25% of autistics were employed. As far as I can tell he neglects to mention any source or reference or link for this statistic in any post on his blog. He then goes on to trot out the argument because at one time 70% of autistics were thought to have intellectual retardation and now according to some CDDS data which I don't fully understand because now 70% of the clients in the CDDS with autism are nonretarded, this translates into a 70% employment rate among autistics at some point in time. Never mind that Joseph does not adjust for changing age of entry of autistics into the CDDS with children coming into the system in much greater numbers at age 3 than in the past, making their intelligence more difficult to assess, which would confound the 70% rate of nonretardation, making Joseph's statistic here questionable.

In one statement Joseph goes even further:

In any case, it would seem that adult autistics who live in private households across the UK are largely productive individuals who contribute to the economy in a manner similar to their non-autistic peers.

So Joseph seems to imply that autistic persons are making just as much money as an NT. While engaging in quantitative numbers of employment based on only 19 cases out of at least hundreds of thousands, he neglects to take qualitative matters into consideration, such as the fact the NT is much more likely to be a doctor or lawyer rather than a ditchdigger and vice-versa and dwarfing the employed autist's income. He neglects to take into account job coaches which cost money. Nor the possibility the autistic person is more likely to be a part-time rather than full-time employee than the NT.

So again, we have ND trivialization of an autistics inability to get married or make a living.

I see that one of my favorite hatemongers, the autistic bitch from hell is at it again . Now she is giving Joseph's employment pronouncements a shout-out with no critical thinking. She is also complaining about the fact that a Danish software company has helped some persons on the spectrum get jobs, claiming that this is segregation in the workplace. She compares alleged segregation in the workplace with the mandatory segregation of blacks and whites in the public school systems at one time. I should not even have to comment on why this is a patently absurd comparison, but here goes anyways. There are no laws segregating autistics and nonautistics in the workplace. This company is just helping out people who need jobs who might have trouble getting them otherwise, not necessarily because they are bad employees but due to some prejudice perhaps. This is not the same as a law saying that autists cannot work alongside typical people. There is no such law and the ABFH knows this.

What is more bizarre is the fact she would complain about segregation of autistics in the workplace, yet she supports segregation in the schools of autistic children from their nonhandicapped peers. She has donated money to ASAN and has supported this organization. This is in spite of the fact that Ari Ne'eman and his ASAN cronies have been supporters of the Individuals with Disabilities Education Act and have lobbied congress to mandate full federal funding of this law. Thanks to this law, many parents of autistic children have been able to get the tuition at taxpayer expense to send their kids to segregated special ed schools, so typical children won't have to be offended or disgusted by having autistic children included in classrooms with them. I was in schools like this for 8 years of my life. I suspect that ABFH never spent a day of her life in a special ed setting, which is probably the case for the majority of ND's. Why she would complain about fabricated segregation in the workplace but donate money to an organization that supports a law that helps segregate autistic children from their nonhandicapped peers makes no sense to me. However, nothing ABFH does or says makes sense to me. What can you expect from a woman who says that autistics who don't agree with her should be put to death and turned into cat food.

Well that is some ND Potpourri, stay tuned for some more, I am sure there will be some.

Tuesday, November 3, 2009

Will end of Asperger's mean end of neurodiversity?

According to an article in yesterday's new york times there is now talk of eliminating Asperger's syndrome as a diagnosis in the 2012 edition of the DSM. One of the reasons given is that the diagnosis is confounding and means different things to different people.

Asperger's syndrome being included under the rubric of autism has been a boon to two different groups of autism aficionados with whom I have been at loggerheads at various times.

The first group is the mercury militia, vaccines cause autism group of people who claim that there has been an epidemic of autism. They cite the increase in prevalence from 1-4/10,000 to the current rate of 1/150 (or even higher) that has been cited by the CDC and others sources. It is very likely that at least part of the reason for this increase has been the introduction of Asperger's syndrome into the autism lexicon. The same is true for autism speaks and the numbers that they give to generate fund raising. Without these numbers they would not be able to give the simplistic quick fix solutions of chelation and other questionable methods of treating autism. Or the claims that vaccines have caused an alleged autism epidemic. It is unlikely they would have been able to do this without Asperger's.

The second group is an ugly cult called neurodiversity, which claims that autism is not a defect or a disorder but merely a difference. Autistic people would do just fine with the right supports. These people claim to speak from personal experience. Yet it would seem that the vast majority of them have Asperger's rather than an autism spectrum disorder per se. Can they really speak for me let alone others such as John Belmonte or Dov Shestack who cannot speak and have challenges in life quite different from theirs?

University of Michigan professor Catherine Lord has been quoted in the article as saying there is no difference in the diagnostic criteria used to assess Asperger's from high functioning autism. However, my understanding of the situation is different from hers. One of the things that really differentiates high functioning autism from Asperger's is the presence or lack of a speech delay of some sort before the age of 36 months; the former would indicate autism, the latter Asperger's. Though at one time I thought of myself as being possibly Asperger's, now I don't think of myself that way because I did indeed have a speech delay. Though, by most standards, I would consider myself quite high functioning, my problems are probably more severe than most of those in the ND movement and some others who call themselves Asperger's and by extension "autistic". Nowadays autism is often diagnosed in persons before the age of 3. Asperger's is often not diagnosed until about age 8. So it would appear that though there may be some similarities it would seem that this would show that we are talking about two distinct conditions.

Unfortunately, the plan is not to say that persons with Asperger's can no longer call themselves autistic but to include all of these people under one rubric, autism. Not surprisingly, ASAN leader Ari Ne'eman is a proponent of this plan. The article quotes him as saying he does not want to look at himself as being a superior Asperger's person but someone with autism. According to the recent Newsweek magazine article that was done featuring Ne'eman, unlike myself, he did not have a speech delay before the age of 3, but was able to say the names of various dinosaurs at age 2. He was not diagnosed with any sort of an autism spectrum condition until the age of 12. Prior to age 12 his diagnosis was Attention Deficit disorder. If Ne'eman had presented with a clinical picture similar to mine before the age of 3, it is very possible that he would have been diagnosed with autism at the time.

My proposal to the authors of the DSM is to eliminate both Asperger's and PDD and just have one diagnosis of autism. One of the mandatory criterias for whether or not one could be diagnosed as autistic would be to have had a speech delay before the age of 3.

This would not only mean that Ari Ne'eman could no longer call himself "autistic", but the same would probably be able to be said for many if not most of the members of club ND. How many of these autistics actually had a speech delay at age 3? If they didn't, can they really speak for myself and say "most of us don't want to be cured". Or in general talk about how autistics feel. Would they be able to present their views before the IACC from personal experience? Would the autistic self advocacy network have to change its name? It is possible that if the DSM were changed in the manner that I wanted it to be changed this could be the death knell for the neurodiversity movement. Persons interested in autism with a speech delay would be able to read stuff on the internet about autism in peace. We would not be bombarded with the constant trivialization of autism. We would not be insulted because we want a better life for our children or for ourselves. They would no longer be able to call those of us who don't like our autism and wish to be cured of it "quislings". They would no longer be able to claim that they deserve to be on the board of directors of autism speaks because of the old "nothing about us without us" mantra. After all, it would no longer be about them.

I realize all of these scenarios are a pipe dream. Assuming that the DSM is in fact changed and Asperger's is eliminated as a diagnostic category (it may or may not be) they could still say that they are autistic. It is irrelevant that they never had a speech delay or the challenges that more severely autistic persons (even myself included) have had. This is what would probably happen if the DSM were changed, they would just call themselves autistic. They would even, according to the article itself, still be able to use the term Asperger's in the loose sense.

Of course, like Martin Luther King, I have a dream.