Wednesday, September 29, 2010

interesting petition from Ari Ne'eman and ASAN

I see that Ari Ne'eman (as well as I presume the rest of the members of the autistic self advocacy network) have taken umbrage at republican senatorial candidate Sharron Angle's controversial remarks about autism and insurance mandates, where she implies that some persons may be faking autism. ASAN is now circulating an online petition urging Angle to apologize for her remarks.

It seems to this blogger the majority of ASAN's advocacy activities are aimed at telling the world how easily offended they are and just trying to claim people should not be offensive rather than actually doing something to help disabled people function better in the world or fighting for abuse such as what happens at Judge Rotenberg center. The Ransom notes campaign from a couple of years ago is the most well-known of these examples. If everyone spent as much time crusading anytime a remark that they found offensive was said, no one would get any work done during the day and the world's activities would grind to a halt.

Since Ari Ne'eman and ASAN insist that Angle apologize for remarks that they don't like how about if they apologize to me for remarks and activities that I find offensive.

I find it offensive that they would state that curing autism is morally reprehensible. That they would spend time on the Zacqhery Price case after saying that no criminal should get a free pass because of autism. I am offended that they would claim they never said that autism was not a disability and after I produced Ne'eman's essay they would make a pathetic attempt at damage control and edit the essay, then admit it was a mistake to phrase things in the essay the way they did, then delete it from their site altogether. I find it offensive that Ne'eman, (a 21-year-old kid at the time) had never worked in a job of any sort and would claim that the solution for reducing employment among autistics was to eliminate social pleasantry as a criteria for hiring and a good job evaluation. This is particularly offensive after I have been fired something like 20 times, forced to resign from other jobs in more marginal situations and tried to make a living more years than Ne'eman has been alive. I find it offensive that they would accept donations from the "autistic bitch from hell" who has stated that persons with autism whose views she does not agree with should be put to death and turned into cat food. There is speculation that ABFH is in reality Meg Evans, one of the top executives of ASAN. I find it offensive that they would accept donations from a vicious and cruel hatemonger like Clay Adams who can only try to win an argument with me by bringing back the Bettelheim era and stating my mother was responsible for all the problems in my life and making up bigoted statements mocking my disability and by extension all disabled people whom ASAN claims they want to have dignity. As well as calling both me and my mother names just because he does not like the fact I take Ne'eman to task. Ne'eman may not know about this since it happened before he was born but in 1980 the Ku Klux Klan endorsed Ronald Reagan's presidential candidacy and Reagan renounced the endorsement and refused to accept money from them. I wonder why Ne'eman and ASAN don't do the same thing where ABFH and Clay Adams are concerned.

I find it offensive that they would imply that there is a possibility that parents of autistic children who donate money to autism speaks are morally complicit with murder. I find it offensive that they would imply that genetic research is used to find a way to abort autistic fetuses.

I don't know how to do an online petition and I don't know how many signatures I would get. But the various statements and actions of Ne'eman and his colleagues are just as offensive to me as Angle's statements about autism are to those who took umbrage at her remarks. I suspect there are others besides me who find a lot of Ne'eman's and ASAN's remarks offensive.

I suggest that ASAN write a public apology to me ( and anyone else they may have offended) on their websites before they start circulating petitions claiming someone who makes remarks offensive to them should apologize. After all, what is good for the goose is good for the gander.

Tuesday, September 28, 2010

Sebelius: pot calling kettle black

Nevada's republican candidate for the U.S. Senate has recently been mired in controversy for statements she has made about the new autism insurance mandates, using air quotes to describe autism and implying that perhaps these people don't deserve coverage or that autism is a trivial condition.

Interestingly, secretary of health and human services Kathleen Sebelius has given her take on the matter Sebelius states:

It is my understanding that Sharron Angle believes that there is a hoax, under the guise of autism, where you would include requests for treatments that may not even be required," said Sebelius, who was in Nevada promoting health care reform with Harry Reid.
Sebelius pounded Angle's comments as "insulting" to parents and kids, adding: "I don't know if there is anyplace in the country where the differences in the candidates are more stark than here."

Autism's gadfly has questioned the value of these insurance mandates in the past, particularly covering ABA, an experimental treatment where the research has used punishment in order to get the results, in spite of the fact that these punishments have been outlawed in California, where I live and possibly other jurisdictions, as well as the fact there have been no published adult outcomes though the federal government has funded this research to assess adult outcomes.

Of greater concern, at least to this blogger, is is the strong statement by autism speaks is that these insurance mandates will make the difference between an autistic child having friends and not having friends.

Aside from the problems of these insurance mandates and their dubious value it seems odd to your humble blogger that Sebelius would be making these statements in light of the fact she has appointed one Ari Ne'eman to the Interagency autism coordinating committee. Gadfly questions the constitutionality of the IACC and the fact that these appointments by the secretary of HHS would seem to violate the principles of checks and balances between the executive branch and legislative branch that this country was founded upon in that these appointments don't require confirmation by the senate and Sebelius is accountable to no one in making a controversial appointment. Speaking of quotes, air or otherwise, check out one statement by Sebelius appointee:

The belief was that anyone society labeled"disabled" could only go so far. Sadly, these misconceptions had the potential to become self-fulfilling prophecies. When the expectation is that people of a certain type can only reach so far, they are not provided with the same challenges and opportunities that educators give mainstreamed students....

Also another statement:

We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not disability and someday, I hope, the world will recognize that those who think in different ways should be welcomed.

Regular readers of this blog will remember that after Ne'eman steadfastly denied that he had ever said autism was not a disability, Gadfly called Ne'eman out on these statements. He subsequently edited the essay changing the difference is not disability statement to difference only becomes disability when not accommodated for. Apparently dissatisfied with this rather pathetic attempt at damage control, Ne'eman and his ASAN cronies deleted the essay altogether from their web page.

Another interesting statement from Ms. Sebelius' appointee:

But if we are to demand equal legitimacy, if we are to assert that a “cure” is not only unnecessary and undesirable but also morally reprehensible

Again, note the irony of the c word in quotes.

Ms. Sebelius, I can't speak for whether some found Ms. Angle's comments insulting. On the other hand, I find your appointment of Ari Ne'eman to a taxpayer funded body that mandates autism policy utterly offensive. I find it strange that you would make these comments critical of Ms. Angle as if you really give a shit about persons on the spectrum, when you appoint someone who does not tell the truth about saying autism is not a disability and claiming that curing people of this affliction, which I presume mandated insurance would pay for if such cure existed, would be morally reprehensible. It would indeed seem your statements are hypocritical and you are a very black pot calling a kettle the same color.

Monday, September 20, 2010

full text of my l.a. mag article

here is the full text of my l.a. magazine article in case anyone is interested.

John Robison wants to study "geek success"

A controversy at one time extant in the autism blogosphere was the lack of autistic representation in the leadership of that well known organization autism speaks. Recently best selling memoirist, John Elder Robison was appointed to a scientific advisory board of AS. He has expressed an interest in scientific research that will help mitigate the problems of autism spectrum disorders.

For a while, it would seem that Robison was more interested in garnering AS funds for his own personal use than he was in reviewing science or suggesting ways that persons on the spectrum could be helped by science.

As of recently this seems to have changed. Robison has apparently been attempting to make a couple of suggestions for directions into which autism science should go. One of the interesting ones is to study geek success. Why would Bill Gates be able to become a billionaire in spite of having autism or autistic traits and why would college professors like Vernon Smith and Richard Borcherds have success in spite of being on the spectrum. when other persons with similar traits are on social security disability? Robison's brilliant suggestion is to study these traits and see how they can be applied to persons less fortunate. The criteria for specifying whether these persons are autistic is Simon Baron-Cohen's AQ test.

Though Robison mentions Bill Gates he neglects to mention any other specific examples of autism success stories. I believe that I have debunked the notion of Bill Gates' autism in my undiagnosing essay which Robison has apparently never read, so I won't go into this further. I am sure the interested reader can find my essay and read the section on Gates and judge for themselves.

One of the problems Robison neglects to mention about the AQ test, is that it is a self-administered test meant for adults with normal or above average intelligence. Not for persons with intellectual disabilities. (Though recently newer versions have been devised for children but it is different than the adult test) As far as I know, it has never been standardized in any way and just an informal test. It is also not something meant for a legitimate clinical diagnosis which even Baron-Cohen himself has acknowledged. Professor Vernon Smith who neurodiversity proponents (and perhaps Robison) give as an example of an accomplished ASD'er just decided at age 78, based on this self-administered test that he was on the spectrum without bothering to get any kind of diagnosis.

Richard Borcherds is another example mentioned, here is what Baron-Cohen stated in his book The essential difference on the alleged AS:

One might question whether Richard Borcherds really merits a diagnosis at all, given how well adapted he is. Certainly he is not currently severe enough in his symptoms to warrant a diagnosis in adulthood, as his symptoms are not interfering with his daily functioning. In the jargon of the diagnostic criteria, he is not "suffering any impairment in his daily life"........

Of course, perhaps Robison and his friends (like Alex Plank) in the ND movement can actually find a legitimate geek success who is on the spectrum. All we have to do is isolate that person and find out what makes them so successful, then we can find out what went wrong in the non-geek who is on social security disability and not making a six or seven figure income as a computer scientist or college professor. This can be done in intellectually impaired autistics who can't speak as well. After all, they have more in common with Bill Gates, Vernon Smith and Richard Borcherds and perhaps some geek who legitimately has an ASD than they realize. Wow, what a major breakthrough that will be. Instead of being handicapped all autistic people will have this potential to be successful because of these traits.

I can't wait for Robison's next brilliant suggestion.

Wednesday, September 1, 2010

Darius McCollum arrested yet again

We see, that the well known person, Darius McCollum, who is obsessed with trains and has a propensity to steal them has been busted yet again. McCollum has alleged that he has Asperger's syndrome. As a boy, he was obsessed by trains, particularly the New York transit system. He would hang out with the New York MTA workers who took a liking to him and showed him the ropes and ended up knowing more about the system than anyone else. But he had a compulsion to take the subway trains for joy rides and though he knew what he was doing was wrong. He has been arrested now 27 times in the last three decades, so averaging close to one arrest per year. Apparently, not being able to find a train, he took a bus for a joyride.

Personally, I am skeptical that McCollum actually has any sort of ASD. He was able to get married (though now divorced or separated) and the fact that he was able to relate to the NYC MTA employees and they took a liking to him makes his diagnosis suspect at least to me. There is no question, however, he has some very severe OCD issues. I feel, however, that his circumstances are highly relevant to the thrust of this blog, as I will point out below.
when McCollum was arrested last, autism's gadfly gave his take on the matter
I inquired as to whether the neurodiversity movement would actually give a shit about this person. "Jypsy" pointed out to me that there had been some effort to assist Mr. McCollum and she had personally been involved in these matters with the persons who were interested and were trying to help defray some of his legal costs. I found the relevant info online and I emailed the people who were involved to get their take. They were happy that I took an interest and told me McCollum was in North Carolina, staying at his mother's and gave me his phone number. Intrigued I called the number and a person alleging to be McCollum answered the phone and we chatted for a bit. He told me he had tried very hard to stop his compulsion and had taken various SSRI medications used to treat OCD issues but nothing had helped. He seemed resigned to the fact that this was a lifelong issue and there was nothing he could do.

His lawyers tried to use Asperger's as a legal defense without success.

I was still in correspondence with Ari Ne'eman back a couple of years ago and asked him if ASAN was planning to do anything to help McCollum and he stated that McCollum was not an issue they were pursuing.

This was before I had read Ne'eman's interesting essay where he talks about how curing autism would be morally reprehensible and he was claiming that autism should never be used as a defense against criminal behavior under any circumstance. In spite of this fact, Ne'eman later claimed that Zaqhuery Price, who assaulted some teachers in a special ed school should have the charges against him dropped.

When I pointed out these inconsistencies in my post, various members of the ND community pointed out to me because this was an 11-year-old boy and the teachers somehow were to blame because they did not accommodate his disability properly that this should be some sort of exception to Ne'eman's rule.

I wonder how they feel about McCollum, a 45-year-old man, particularly in light of the fact that he may have an ASD (assuming gadfly's skepticism is incorrect). Would Ari Ne'eman and Socrates throw the book at this guy and lock him up in a cell and throw away the key? Would they claim that curing McCollum of his compulsion would be morally reprehensible and that he should go on stealing trains, yet say that he should be prosecuted to the full extent of the law? Or would ASAN and ND claim that this behavior should be accepted? Or would they claim that society had somehow failed to accommodate McCollum and that if society learned how to utilize the strengths of autistics and ended discrimination against autistics, then McCollum would not steal trains? Inquiring minds want to know.