Wednesday, December 23, 2009

Sullivan gets it wrong on Ari Ne'eman again

I see the left brain right brain no brain blog is at it again with attempts at damage control when autism's gadfly exposed Ari Ne'eman for being appointed to the national council on disabilities when he has stated in the past that he does not believe that autism is a disability. In the original essay from which I quoted Ne'eman stated the words "difference is not disability". I won't bother linking to the essay because it has now been changed and I have linked to it and quoted the essay as it originally stood in my previous post and the interested reader can see these. In the changed essay Ne'eman wrote that difference is only disability when it is not accommodated for. Sullivan quoted this changed statement and neglected to acknowledge that the essay was later edited. He did not bother to quote the original essay. Even with the changed essay I disagree with Sullivan's statements that this is different from saying that autism is not a disability. Even in the changed essay Ne'eman is still implying this, though giving himself some leeway. Though Ne'eman's changed statement really does not change the fact that he is still stating that autism is not a disability, at least given the standard definition of disability, Sullivan is trying to claim that those of us who are unhappy about Ne'eman's appointment to the council are misquoting what he said. I suppose I should have taken a screen shot of Ne'eman's original essay to show that Sullivan and other Ne'eman supporters are really being dishonest in stating that Ne'eman never stated that autism was not a disability.

The origin of Ne'eman editing the essay where he originally wrote difference is not disability probably goes back to another pathetic attempt at damage control on Sullivan's part where Sullivan made tons of factual errors and neglected to do the necessary research that Ne'eman in fact had said that autism is not a disability. It was autism's gadfly who did the research showing Ne'eman in the past had written in an essay the words "difference is not disability" and had in fact stated that autism is not a disability. Ne'eman then stated:

As for the comment made about my Jewish Week article, I don’t recall saying at any point there that autism wasn’t a disability – only that it was not a disease, something I think exemplifies the neurodiversity position much better. I did seem to imply it though with the phrase “difference is not disability”. Though the phrase is technically true, I shouldn’t have phrased it that way. I was wrong to do so – and if that is the worst mistake I’ve made or ever will make in print, I’ll count myself lucky. Fortunately, I have years of advocacy work and public statements that show my work in the Disability Rights movement as a person with a disability.

So at the very least Ne'eman does admit to having made an error in the original article. He then went back and edited the original article to give himself some wiggle room.

Having quoted the pertinent phrases of the article as it originally stood as I have done in my previous post where I talked about my take on Ne'eman's nomination to the council, I stand by my statement that the context in which "difference isn't disability" Ne'eman was stating unequivocally that he (at least at the time) did not believe that autism is a disability. His statement that he never said autism was not a disability certainly is not true and there is no doubt of this. Sullivan and the other ND's can put all the spin on it they want but I don't believe there is any other way that Ne'eman's comments can be construed. It is irrelevant that he has lent his time and efforts to legislation and organizations that have used the term 'disability'.

The only thing that Sullivan does get right in this piece is that the efforts on my part and others who don't want Ne'eman appointed to the council will most likely be futile. Nominations to the NDC are most likely routinely confirmed as they would not generate enough controversy or have enough people complain. These are probably not like nominations to the supreme court where a controversial candidate gets scrutiny and enough people would complain to their senators and they would be blackballed in the case of Robert Bjork and nearly blackballed in the case of Clarence Thomas.

If a nomination to the NDC were in the same league as a nomination to the supreme court, I can't help thinking of the grilling that Ne'eman would be getting in a subcommittee of the senate about his previous statements.

Thursday, December 17, 2009

Obama appoints Ari Ne'eman to National Council on disabilities

I see that President Obama has made nominations for some new administration positions these include a nomination for Ari Ne'eman's appointment to the National Council on disabilities. So, now we have someone who has stated the position that certain people think autism speaks is morally complicit with murder and seems to have given this statement credibility. We also have the appointment of a 21-year-old who has never been employed in any capacity who gives input on employment. Most stupefying of all is that Ne'eman is being appointed to a council on disabilities even though he himself does not believe that autism is a disability. Ne'eman has written:

We see the world in a different way than our neurotypical peers (neurotypical is a word in the autistic community meaning those of the majority neurology). This does not imply a defect, but merely a difference — one that we have just the same right to as those of a different race, nationality or religion.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....
In the last paragraph Ne'eman writes:

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.

Of course if anyone wants to argue semantics, Ne'eman does say in that essay that disability comes from society's attitudes, so in essence he could be claiming the old Larry Arnold argument that he considers himself disabled from the social model rather than the medical model. However, still this shows to me that he has a different definition of disability than the mainstream, including what I suspect is the federal government's.

This appointment of an inexperienced 21-year-old who has these views that I regard as harmful is of concern to me. I am not sure if these nominations have to be confirmed by congress or not. I would consider writing my congressman though he never responded to my question of the legality of allowing Ne'eman and Katie Miller to testify before the IACC so seems pointless to write him again. I may write a letter to President Obama telling him how much this appointment concerns me.

Addendum: I decided to call my congressman's office. I was told that these appointments are confirmed by the senate and not by the house. I have written (by email) both senators Boxer and Feinstein, urging them to reject Ne'eman's confirmation to the council. I also left a phone message with Boxer's office. I got a message from Feinstein's office saying the lines were busy, but I guess the email may be enough. Of course, these appointments are probably routinely confirmed in most cases, so there is little chance enough people would complain and we could get the senate to reject Ne'eman's confirmation. But I urge anyone who feels as I do who is an American citizen to contact their senators and urge them not to confirm Ne'eman's appointment.
I have also contacted the white house and left a message for president Obama that I disapproved of this nomination and felt he should reconsider.

Tuesday, December 8, 2009

James Delorey disputes neurodiversity's propaganda

I see that a nonverbal autistic 7-year-old boy who was lost in the snow in Canada for a couple of days has passed away. Once again the ND line that autism does not kill anyone has been disproved by this innocent young child's untimely demise. It always saddens me to read these things.

I realize there won't be a cure in the foreseeable future, but if one could be found at some point of time, senseless deaths like these could be prevented. So, the ND movement once again with their trying to stifle scientific research that could lead to a cure for autism does not seem to care about preventing tragedies such as these.

Once again, there will be outrage and fury by the ND's anytime a child with autism is senselessly murdered by their parents. I and anyone else who desires a cure for autism will be blamed for that murder by these people. I doubt James' death will be posted on any ND blogs, nor will any tears be shed for his death. Though I have no actual statistics, it would seem anecdotaly far more children with autism die from tragedies such as these than are murdered by parents, caretakers or others. Harold Doherty has posted it on his blog, I don't think I need to provide a link.

I wonder when Ari Ne'eman and ASAN will lobby congress for funding of GDS devices for parents of nonverbal autistic children who can't afford them.

I wonder what James' parents would think if they read Morton Gernsbacher's, Michelle Dawson's and Laurent Mottron's piece, autism: common, heritable, but not harmful.

Tuesday, December 1, 2009

Ari Ne'eman testifies before the EEOC

I see the never employed 21-year-old Ari Ne'eman is at it again. Ari Ne'eman seems to once again offer his expertise on the subject of employment, something he knows of not one iota, never having been employed in his life. I've previously written about Ne'eman's trying to make himself out to be an expert in this subject of which he does not know from shoe polish. The media exposure happy Ne'eman gave an interview to a New Jersey newspaper in which he offered his own input on the workplace. Not as anything more than an ivory tower observer, let alone someone (myself) who has had many years of experience in the workplace experiencing these problems first hand that happens to those on the spectrum. Now, Mr. Ne'eman is offering his $.02 worth (and even this price tag is being exceedingly generous to Ne'eman) by giving testimony before the EEOC.

Ne'eman starts off by stating that all autism spectrum disorders should be included under the EEOC's rubric. This is not surprising in that Ne'eman having had speech at age 2-3 and knowing the names of various dinosaurs, would have never had an autism diagnosis based on criteria which was not extant until about 1994. He would still have to say he had Attention deficit disorder and be a crusader for the rights of this group instead.

He also talks about a clause in the law that is a 'regarded from' aspect of the disability and states that things like a data entry person being dismissed from their job for not looking the person in the eye be something that is inclusive among autistics. What Ne'eman in his youthful naivete' fails to grasp is that an employer is not going to outright admit to terminating a person's employment because they did not look the employer in the eye. They will come up with an excuse that no matter how bogus will basically be impossible to prove in a court of law or the EEOC or anywhere else where a terminated autistic employee will desire to redress a grievance against a discriminating employer. I know this for a fact because I was fired from a data entry job where a productivity study was falsified against me. Naturally this individual would not come right out and say that he was firing me for being a peculiar person. It would have been certainly infeasible if not impossible for me to disprove this contention and claim that I was being discriminated against.

Secondly Ne'eman claims that 30% of companies are offering these personality tests which are irrelevant to performance of a job in question and that due to a person with autism giving undesirable answers they are screened out from a job from which they are qualified. Interestingly, I have had hundreds of job interviews (as opposed to Ari's likely zero) and I can't recall one instance in which I was administered one of these so-called personality tests. I suppose it is possible things could have changed drastically from where 0 to 30% of companies would give these tests in the few years that I have been out of the job market but that seems unlikely to me. What Ne'eman won't acknowledge is the fact that though discrimination exists and is indeed a factor in autistic employment, impairment is a much more poignant issue. The fact that a person with autism actually has a disability that incapacitates their ability to learn and do a job certainly does not jibe with Ne'eman's "being anti-cure isn't being anti-progress" mantra. However, Ne'eman wishes to deny me and others the cure that would enable us to be employable. If I had been an extremely good medical transcriptionist, plumber, computer programmer, etc, I would have had no problem keeping a job. It is true I would have faced some discrimination but I would not have been forced out of the workplace at a relatively young age. This is likely true for most if not all persons on the autistic spectrum.

I personally have little faith in the ADA or the EEOC in being able to do anything to help autistics secure employment. But Ne'eman's big government intervention policies help him conveniently avoid the issues of an autistic person actually not being able to work aside from discrimination. I do not believe that these federal laws that supposedly protect disabled individuals in the workplace are enforceable. This goes along with my nearly 28 years of experience of having actually worked with this handicap, being fired from multiple jobs and having applied for many many more.

Ari Ne'eman I know you read this blog and I would appreciate it if you and ASAN would do us all a favor and not try to talk about work related issues until you have actually gone out into the world and worked as an employee yourself.

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.

Monday, October 26, 2009

Everyone wants a cure for autism?

I see that the pharmaceutical company Pfizer has started a new autism unit devoted to trying to find drug treatments or possibly even a cure for autism. Diane Stephenson one of the Pfizer research associates who has started this unit has an autistic nephew who at age 23 has never spoken a word. She also has another younger nephew and niece who have autism, who are the children of another sibling of hers. This has motivated her to do research to find help for these individuals as well as others on the spectrum.

I found the following quote from the article particularly interesting:

"Everyone wants a cure,"(emphasis added) said Stephenson, who has worked at the Groton labs for six years. "I felt there was something I could do."

Apparently Ms. Stephenson has never heard of the neurodiversity movement. I wonder what this scientist who has a 23 year old autistic nephew who is completely nonverbal would say, if she discovered there is a cult of individuals who are opposed to curing autism. A cult who believes that to cure someone of this disease is stripping them of their humanity. Who teach 16 year old kids that wanting your loved ones to have the ability to speak who don't have it is "disgusting drivel". Who claim that parents of autistic children who want a cure for their children are like members of the Ku Klux Klan who are forced to raise black children. I wonder what Ms. Stephenson's reaction would be if she found out that a half million dollar grant was given by the major private sector funder of autism research to a man claiming the goal of curing autism is nonsensical, who also said that autism is not a dysfunction or disorder but merely a difference and has written that autism isn't harmful.

What would Ms. Stephenson think if she found out, an eminent experimental psychologist who gets extensive funding from the government has written that her nonverbal nephew needs acceptance and not a cure and that this psychologist claimed personal experience with autism by having a son with the condition. Unlike Ms. Stephenson's nonverbal nephew at 23, the psychologist's son is a high school senior at age 12.

I wonder what the Pfizer scientist would think if she found out that a 21-year-old kid with virtually no life experience was claiming that it was a myth that her nonverbal nephew had no hope and no future.

I can't imagine what her reaction (0r her nephew's) would be if she found out there was a group of people who claim the reason that some autistic people wish a cure for their condition is because their mother taught them to hate themselves.

Well, there is an old saying, ignorance is bliss.

Sunday, October 25, 2009

Does neurodiversity give a s*** about Patrick Fuglei?

Gadfly has come back after a brief hiatus. I have found an interesting piece about bullying of an autistic that I thought I might weigh in on.

Whenever I state my views about neurodiversity, stating that I long for a cure (though I concede it is unlikely it will be found in my lifetime), disputing their social model of disability, refuting their lies such as that Vernon Smith and Richard Borcherds were ever diagnosed as being on the spectrum by clinicians, their claims that autistic people can do just fine with the right supports and Ari Ne'eman's claims in the despicable No Myths video that the prognosis for most persons on the spectrum is not poor, etc, the response from neurodiversity is quite predictable. I am bombarded by the strawman that because I am opposed to these notions that I am against human rights for persons with autism, that neurodiversity is nothing more than the idea that autistic lives are worthwhile and they are entitled to certain human rights.

Interestingly enough, though bullying is often a problem for those on the spectrum, at least during childhood and adolescence, myself included, I seldom hear anything about it from members of the ND movement. I usually hear the arguments about how vaccines don't cause autism, there has never been an autism epidemic, and how hateful it is for those to claim that they could possibly be "toxic". I also hear about what a horrible organization autism speaks is, what a horrible person Jon Shestack is for wanting to cure his son, who can't speak or dress himself or do anything without an aide.

How about bullying or other human rights violations that persons with autism have to endure? As the old lady in the Wendy's television commercial would say, "Where's the beef?"

Patrick Fuglei's case is an example of this. A boy who had no friends and is so anxious to fit in, he does not mind other kids calling him "retard". He has such poor social judgment that when students have told him he should tell a pretty girl how much he would like to see her naked he will do it. When taunted by other kids that he had a vagina, he was challenged to prove them wrong. He accepted the challenge, dropping his pants, showing them he had no vagina, right in the middle of the playground. This is really no different than rearranging the furniture in a blind person's home when you think about it. His parents attempted to mainstream him hoping that he could have a normal life as possible and be in a school with his non handicapped peers, but this did not work out. The teasing and taunts got so bad he had to leave the school (with the very ironic name of Hellgate) . He will be attending a special ed school for autistic persons in another state where his grandparents live. Seems sad that a kid like this has to live in a different state from his parents because his human rights have been ignored by everyone including those in the neurodiversity movement.

The article also states that Patrick wishes to be "normal". Apparently he is another autistic, who missed the neurodiversity polls in which they claimed most don't want to be cured.

This article does hit home with me. I had to end up going to a school outside of my school district because I was receiving so much bullying and harassment from other kids. This was after I left special school. Of course, it is a myth that special ed kids are not picked on by other special ed kids, so Patrick may be disappointed at his special ed placement.

One reason that the ND's don't care is that many of them are bullies themselves. It would seem anyone on the spectrum who desires a cure incurs their wrath and becomes a target. I have been the victim of internet bullying among a number of members of the autism hub which represents blogs where the neurodiversity bloggers congregate. Parents are bullied by the august bloggers Kowalski and Turner. I have written about these two unsavory characters previously. I have been told by Dave Seidel, one of the hub administrators, that membership in the hub requires consensus among all the bloggers in the hub. Therefore we can judge them by the company they keep. It would seem the hub denizens not only do not care about bullying but rather promote it.

I realize that it is possible that many of them were bullied themselves. This is probably not an uncommon phenomena. They were bullied and projected their anger onto others more vulnerable so they became bullies themselves.

If Ari Ne'eman, Dave Seidel, or Michelle Dawson or any other ND who claims their movement is about human rights happens to read this, how about Pat Fuglei, what about his human rights?

Wednesday, October 14, 2009

AS board member gives take about autistics on the board

One of the controversies that the neurodiversity movement has brought to the forefront in the past is the question of why autism speaks' board of directors does not include someone on the spectrum themselves. They feel that the name of the organization is ironic in that it disenfranchises those with autism for that reason.

When various persons, mostly neurodiversity believing persons on the spectrum, complained about this, I suggested that they contact autism speaks and ask them why there were no board members with autism. At the time, as far as I knew, AS had never been contacted and asked this question. Janet Norman Bain (AKA Jypsy) wrote a comment on autism's gadfly stating that she had in fact sent AS email asking them the question, and had only received a curt form email thanking her for sending them the email and had never directly received a reply. Michelle Dawson also stated that she had asked officials at autism speaks the question and they had just stated they were happy without any board members on the spectrum. Michelle then seemed to imply that I was giving inaccurate information, though I had no way of knowing either Jypsy or Michelle had asked this question.

Mike Stanton took my advice and sent an email asking autism speaks this question. Apparently they never answered him either. Both Jypsy and Mike seemed to think the onus was on me to dig up the answer because I had blogged about it. I respectfully disagreed, but told them that I occasionally ran into Jon Shestack and Portia Iversen at certain autism-related things and although I did not know them very well, if I ever saw them again I would ask, but not go out of my way to find out. I told them if I ever got a response that I would post it here on autism's gadfly.

I recently wrote a post about one spectrumite who seemed he might be a candidate for the board of directors of AS in the foreseeable future. As luck would have it, Jon Shestack read this blog entry and weighed in about the question of persons with autism (at least those with an ND perspective) serving on the board. In case Mike and Jypsy have not read the comment by Mr. Shestack, I feel that I should print it here in order to keep my promise to them. Given that Mr. Shestack is a member of the board himself, what he said may be of interest:

I recognize that ND folks has real issues. Humiliations and unfairnesses abound. But they help no one by going on the board of mainstream autism organizations. These organizations are set up to help people who are fundamentally different. Who are for the most part dependent on others. Who can not get married, communicate, or perform useful work unaided.What the mainstream autism organizations need is to make sure that actual parents and siblings, people with firsthand exposure to the disorder and who also have real credentials as activists are represented in the decision making process, particularly the scientific funding process. AS and Simons run the risk of becoming like NIH, institutional echo chambers where new ideas get drowned out by the old voices.The ND activists have no desire to foster research and they should stay away from organizations where that is the main goal. But they do seem very concerned with rights and perception, and I feel that they have had a great influence in these areas very quickly. It would be great to see the ND community coalesce and concentrate on those issues and not muddy the waters and inflict emotional hurt on those families that are desperately searching for a cure and a better life for their children.

I disagreed with Jon's statement about the ND's not being interested in scientific research and pointed out the nearly half million dollar grant that AS had recently given Laurent Mottron and the persons who work with him. Though I agreed it would be a laudable goal for ND just to concentrate on human rights and dignity for persons with autism and not inflict abuse on families wishing for a cure and a better life for autistic children I pointed out to him that this is quite unrealistic.

Other than these two points of contention, this seemed like quite a good response to me. It also seemed quite a magnanimous response on his part, considering in the days before Allison Tepper Singer this man (and possibly his wife) has received more vilification than any other autism figure. He has been called a Nazi, Hitler incarnate and autism diva once called him "a spoiled Hollywood type".

One of the reasons that ND may have expressed an interest in a position on the AS board is they believe this will give them some power. Roger Kulp seemed to think that ND was trying to take over autism speaks by infiltration. As far as Roger's notion being accurate and whether or not Mike Carley would be able to sway AS to an ND agenda, Mr. Shestack again gave his input.

As for the notion that the ND people will take over As through infiltration, surely you jest. I founded CAN and the Autism Genetic Resource Exchange, and helped get the children's health act passed and am on the executive committee of AS and I have had a minimal bordering on nonexistent effect on its policy.

As for being a member of the AS board, membership for Mr Carley will not advance the ND position or Mr Carley personally. Though he will certainly be asked to fundraise.

Though I realize that this does not give an out and out answer to the question of why there are no autistics on the board of directors of autism speaks, it does partially answer it I believe. If others in power at AS feel the same way as Mr. Shestack does then perhaps, they feel that having an autistic (at least one with an ND perspective) does not help their organization as they have different goals and he feels these people aren't helping themselves either.

It would also seem that being on the board of directors does not wield the power that persons who have asked about that seem to think it does. Jonathan Shestack is certainly in a position to know as well or better than anyone else. Instead an ND board member on the spectrum would be asked to engage in what would probably be to them the drudgery of having to get money into the organization and not reaping what they perceive as the benefits. So ND again might be careful what they wish for.

This is the best response to this question I have been able to get so far. If any other breakthroughs are made I will post about them on autism's gadfly. I hope Jon Shestack won't mind my bringing attention to him in this post and printing out his comments from another post.

Tuesday, October 13, 2009

yet another dies at autism's hand

I see that once again neurodiversity has gotten it wrong and yet another has died at autism's hand. Again we see further evidence refuting their argument that no cure should be found for autism because autism does not kill anyone. Again, those people who mourned Katie McCarron's murder will shed no tears for Devine Farrier.

Friday, October 9, 2009

Autism genetics: Is Temple Grandin keeping a secret?

I have read with interest Mark Blaxill's recent take on some new genetic findings that have been published on autism. I have also read Alan Griswold's brief take on Blaxill's take. Blaxill has written about the problems with genetic research in autism previously as well. Blaxill points out that there have been failures of science to replicate findings in genetic research in autism.

Assuming that Blaxill's arguments are at all valid, this does not really jive with the thinking of Temple Grandin, probably the most prominent of autistic persons. She has said that getting rid of autism genes would hurt society Grandin states:

I would think in an ideal world, you don't want to have people who cant talk, but on the other hand, you definitely don't want to get rid of all of the autism genetics becvause if you did that, there'd be no scientists. After all, who do you think made the first stone spear back in the caves? It wasn't the really social people.

So, in other words, the fact that I have to suffer from an incurable disorder/disease is necessary to society. Dov Shestack and John Belmonte and other completely nonverbal autistics are making a great noble sacrifice for the betterment of society. There may be some problems with this argument. There so far has not been a unifying finding on autism genetics. Blaxill's piece may point that out. A variety of different chromosomes and genes have been implicated in autism. autosomes as well as x chromosomes. Various types of inheritance, both autosomal dominance in the case of autism caused by tuberous sclerosis as well as multiplex genes, given the fact that the rate of concordance among siblings, while higher than in the general population is lower in identical twins. So we have to wonder if autism genes are responsible for all scientific endeavors as Grandin alleges, then which gene or genes is it? Which chromosome are these genes on? Are they autosomal genes or sex genes? Are the genetic mutations the result of duplications, or deletions of amino acids? I have written about the problems with Grandin's logic elsewhere

Perhaps Grandin has some sort of omniscience about the genetics of autism that the rest of us don't have. Pray tell us, Dr. Grandin, what is the genetic etiology of autism that you are keeping a secret from us. Furthermore, since you know what genes contribute to scientific endeavor, perhaps, science can find a way to enhance these genes in ordinary people who might not have the natural stuff to be great scientists. Even more scientific discoveries could be made, a cure for cancer, a way to rid ourselves of dependence on foreign oil, and a way to end pollution.

I wish Temple would let me in on her little secret.

Tuesday, October 6, 2009

Why would neurodiversity endorse facilitated communication

I just read an interesting post by Kevin Leitch, creator of the autism hub and left brain/right brain blogger. Kevin expresses an interest in facilitated communication and wonders if it is genuine. Kevin, if I remember correctly, has a nonverbal daughter and stated, in what is the usual bizarre logic and lack of common sense among neurodiversity proponents, in a radio interview ,that he did not believe autistics needed a cure. However, if a cure were available, he would give it to his daughter if she herself wished for it. In this interview Kev also repeated his belief that autistics who don't want a cure don't need one as well as the hub's old tagline "we don't want no stinkin' cure".

One wonders how it would be possible for a nonverbal child to communicate the desire for a cure. Perhaps, for this reason, Kevin is interested in using facilitated communication as a possible intervention for his daughter. Kevin expresses skepticism about FC but makes the following interesting statement:

The section of the autism community that accepts FC as a valid technique is largely the neurodiversity movement in who’s(sic) ranks I place myself. But is this making me a hypocrite? I place such firm emphasis on science when it comes to vaccines I can do no less in other areas. But on the other hand voices I trust implicitly within the neurodiversity movement speak out in favour of FC. Amanda Baggs, Kathleen Seidel and (I think) Michelle Dawson to name but three.

Kevin neglects to provide any links or documentation of where these three stellar individuals have endorsed FC.

Perhaps he mentioned Amanda Baggs because Amanda Baggs claims to be a nonverbal autistic in spite of the fact she once spoke very fluently and then started to gradually lose her speech in adolescence and then fully in adulthood, claiming to have suffered from catatonia. There is evidence that Amanda may not be all she claims. Though some people have accused Amanda of being a malingerer in order to receive her SSI checks and section 8 housing, I have yet to see any actual smoking guns. Even if Amanda is all she claims, she certainly does not present the same sort of clinical picture as Dov Shestack or John Belmonte who have never spoken.

Also, he may have mentioned Seidel because she and her husband are good friends of Baggs and may be endorsing the fallacious idea that Baggs is a low functioning autistic.

He also mentions Michelle Dawson but seems less certain about her. It would seem strange if Michelle Dawson had actually endorsed FC, being that she is such a stickler for scientific rigor and constantly complains about the low standards of science and ethics being applied to persons with autism. So far, the scientific evidence has been weighted against FC with most (if not all studies) refuting its existence. If anything one would think that Dawson would be criticizing FC and the unsupported assertions of its proponents who apply these low standards of science to autistics.

Interestingly, one person he does not mention is Ari Ne'eman. Given that Ne'eman is the president of ASAN and one of the things they have lobbied congress for is inclusion of augmentive communication devices as part of autism insurance bills and the autism treatment acceleration act. There can be little doubt that Ne'eman believes in FC.

Kevin also wonders if he should believe in FC given people he respects may believe in FC in spite of all the scientific evidence against it. He states that he does not believe vaccines cause autism because of scientific evidence.

Here we see a possible neurodiversity double standard. They accept science that supports their position but reject science that does not support their position. In the past Kathleen Seidel and others have stated that part of the reason they don't like the thimerosal or vaccine hypothesis is because it is insulting to them that anyone would consider them or their children "toxic". It would seem in part the autism vaccine controversy is more emotional to at least some neurodiversites than scientific.

In this vein, one wonders why at least some members of the ND movement, Ne'eman in particular might endorse FC. Perhaps the reason is, they can then say that rejecting a cure for autism or research in genetics and neurophysiology that might enable autistics to lead a better life is fine. Research that would enable autistics to speak is unnecessary, because FC would give them those same capabilities. It would also enable Ne'eman and his ASAN subordinates to make it look like they are actually doing something constructive to help persons on the spectrum, rather than spewing out hatred, lies and propaganda, such as the despicable no myths video. What did the ransom notes campaign, the campaign against the York Pennsylvania kidnapping sign, the pressure placed on AS to remove the I am autism video from their website do for autistic people, who must struggle every day of their lives? Perhaps ASAN realizes this and wants to make it look like they are doing something. Maybe ND's want to make themselves look compassionate and not reveal their true colors as to the vicious hate mongers that most of them really are.

Perhaps ND's who endorse FC have an ulterior motive.

Addendum: Michelle Dawson has commented on Kevin Leitch's post that she does not in fact support facilitated communication and Kevin Leitch has acknowledged the error and has stood corrected.

Monday, October 5, 2009

Michael John Carley: Candidate for AS board of directors?

One of the many complaints that neurodiversity proponents have about their favorite organization, autism speaks, is their apparent belief that AS disenfranchises those with autism in that no members of the board of directors are actually on the spectrum themselves.

For some reason that remains a mystery to your humble blogger it is more important to these people to have someone serve as board of director of an organization to whose goals they have overt hostility than it is for autism speaks to employ someone with autism in their organization. I am not sure what the unemployment rate is among persons with autism, but it is a good guess that it is mighty high. I have previously written about the autism and the workplace promotion (which I won't link to) done by autism speaks in spite of the salient absence of a paid autistic employee in their group.

One of the arguments made for putting a spectrumite on the board of directors of AS is that other autism organizations have persons on the spectrum in position of power. For example one of the board members of ASA is Valerie Paradiz, a Ph.D. in German literature, a former college professor, published author of a memoir and now an autism consultant and lecturer. She makes the claim (which I am skeptical of) that she herself is on the spectrum. I am mystified how this person gives a voice to someone like Dov Shestack or John Belmonte or any other non-speaking person with autism who requires round-the-clock care. Or even for someone on the spectrum relatively high functioning such as myself.

It seems as though persons with autism who believe in an neurodiversity perspective may have cause to celebrate. It would seem that one of their own, Michael John Carley, who like Dr. Paradiz has a published memoir and is an autism lecturer (though not sure if he is a consultant) seems to have quite a friendly relationship with autism speaks. He has had AS president, Mark Roithmayr give his book a shout-out. He and former autism speaks executive, Allison Tepper Singer exchanged some articles of understanding in which they publicly exchanged views.

Given the controversy over the recent "I am autism" video. Carley has weighed in with his perspective. A neurodiversity blogger, Sarah, a cat in a dog's world, has
given her take on Carley's perspective. We see from reading this that though Carley has never met Bob or Suzanne Wright he has met their grandson. So, there seems to be a friendship between Carley and some persons in AS. (though Tepper-Singer is no longer with the organization). Carley has tried to talk up autism speaks. He has disingenuously claimed that they are talking less about a cure. Sarah correctly called him on this.

One place where Carley did hit the nail on the head was his assertion that certain individuals were jealous of the Wright's financial situation. Now this is probably the real reason ND wants an autistic person on the board-particularly an autistic who shares their perspective. They can't acquire the capital for their activities, so by getting on the board of autism speaks, they will be in a better position to acquire it for their own ends.

Carley talks about how the research autism speaks will have some sort of global benefit. This is in spite of the fact that he has spoken for all autistics preaching the familiar "acceptance not cure" mantra on radio interviews. In his book "Asperger's from the Inside out" Carley has claimed that there is a universal feeling among those on the spectrum that they should not be cured. Naturally he neglected to consult either Roger Kulp or myself or any other pro-cure autistic.

Carley who was able to get married, have children, work in a decent paying job and likely never spent a day of his life in a special education school, did not find out he had AS until age 36. Only after his son was diagnosed with an autism spectrum disorder. This is the reason I only read bits and portions of his book and not the entire book. I do not feel he has anything to offer to me about information about the spectrum on a personal level.

For these reasons, it concerns me that he actually has a shot of being the first person claiming to be on the spectrum who will gain one of the coveted board of directors positions at autism speaks.

One would think that neurodiversity would be celebrating and dancing in the street that one of their own has a realistic shot of getting that big score, one of their own, being on the board. Apparently not. Sarah has certainly called him to task. The much nastier ND, "the autistic bitch from hell" has not minced her own words and has referred to Carley as a "curebie suckup" and a "quisling", slurs that the ND community has called your humble blogger in the past.

Carley's ND detractors rightfully see him as someone who may have an ulterior motive in being involved with a pro-cure organization when Carley himself has said that a cure should not be found. Carley, an author, and autism lecturer, it would seem, makes a good portion of his living on the backs of persons with Asperger's and autism. He sees what a good idea it is to get involved with this organization. Amazing, Sarah, ABFH and I all agree on something! So, apparently Carley's appointment to the board won't shut up the ND lobbyists who so adamantly insist that one of their own be appointed to the board of directors.

Carley's behavior may be, however, what it takes to get one of their own on the board. Here you have it ND's, one of your own may soon be on the board of autism speaks. He will lobby for acceptance rather than cure in the board meetings. He will lobby for the politically correct language you so desire. But somehow it would seem you are not happy with this. You see Carley for what he is. But you wanted someone on the spectrum on the board. Now you may have it. Perhaps in the future you neurodiversity proponents should be careful what you wish for.

Sunday, October 4, 2009

Yet another attempt by neurodiversity to bring back Bettelheim

I have been told by at least a couple of members of the neurodiversity movement who have links to the autism hub (hub of hate would be a much more apt name), and whom Kathleen Seidel* has deemed as members in good standing, that the reason for my problems is not a neurologic impairment that incapacitates me but rather that I had a mean domineering mother who taught me to hate myself. It was because of her attitudes that I have all of these problems and unhappiness. They have gone even farther than this calling my mother "a witch" "a shrew" and a "yapping bitch" claiming that because I never happen to mention my dad in my posts that he must have been driven off by her.

Does any of this sound familiar to anyone? No, probably not. It does to me however, because I actually lived through the Bettelheim era as a toddler and small child in the late 1950s and 1960s. I spent approximately ten years in psychoanalysis and had to hear about how my parents went to paint our new house and neglected me and this is what caused my problems. I had to hear about how they happened to let me see my sister naked (my sister is three years younger and the onset of the autism happened around the time she was born) that I noticed she lacked something I had (I think most readers can guess what this is) and that I believed they had cut hers off and that I had worried my parents would cut mine off.

My mother had to hear this shit and it was psychologically damaging to her also. Sometimes she would actually break down and cry during her meetings with my psychoanalyst when she would hear this stuff. The fringe cult of neurodiversity which has done absolutely nothing to benefit persons with autism and related disorders yet has caused immense harm and damage to those on the spectrum and their families has done another thing and that is attempt to bring back this era that I and my parents actually lived through.

It seems that the hub has yet two new additions to their merry band of hate mongers that they have added to their hub of bigotry. two august bloggers who call themselves Turner and Kowalski These two allege (in an apparently intentionally incoherent rant) that parents of autistic children who wish a cure for their children and are unhappy about their child's autism are like members of the Ku Klux Klan who are forced to raise black children.

This type of drivel is read by young impressionable people who are unhappy with being autistic because it has made their life difficult and admittedly they themselves have faced discrimination in the past from society which has caused them to be embittered. I see that the teenage ingenue "sadder but wiser girl" who in the past has compared me to a Jew that helped Nazis kill other Jews in the past has weighed in:

Wow. That was quite a rant. I had to read it thrice to understand it, what with all the fucks and the color switching. But it was very accurate. The Autism Speaks people do sometimes remind me of KKK members forced to raise black children. About the Godwin’s Law thing, you didn’t even mention the Holocaust, but this situation strangely is comparable to the Nazis spreading hate speech about Jews.

Neurodiversity claims they want to make autistics have a good image, but we seem from posts such as Kowalksi and Turner have written and the impression they have made on a minor child, it would seem neurodiversity and the autism hub only tarnish the image of persons with autism and make us look spiteful and hateful and bigoted.

Dave Seidel: If you happen to read this. You are not doing autistics and their families favors by linking blogs that spew out this hateful crap. But it figures, as you really know nothing about autism except having a couple of quirky kids.

The ND movement has been getting more press and media attention. They have been getting more power and they even conned autism speaks into donating half a million dollars to their cause.

When Andrew Solomon's article about Ari Ne'eman and the rest of the ND movement came out, Lenny Schaeffer was quoted as urging Solomon not to write about these people because of the harm they do. I must respectfully disagree with Mr. Schaeffer. I hope the ND's continue to get even more media publicity. I hope more people will write about them. As they become well known people will read the autism hub and read insane blogs such as Kowalski and Turner's odditorial board and they will get bad publicity and most sane people will realize what a scam the whole ND movement is.

*Addendum: I have been informed by Dave Seidel that his wife, Kathleen, has no role in actually running the hub, and the Seidels do not unilaterally decide who can or can't join, but this is done by mutual consensus of hub members. Therefore I have edited the content of the original post putting a * by Kathleen's name in the first entry, striking out a reference to her in two other entries and addressing my comment originally directed to both Kathleen and Dave solely to Dave as an administrator of the hub. Regardless of how members are chosen to be listed by the hub, as at least one of the hub administrators I feel he bears at least some responsibility for the content of blogs that are linked to the hub. Since he refuses to justify his actions to me and won't denounce the Kowalski and Turner post, I believe I can still hold him complicit with the posting of the idea that parents who wish to cure their autistic children are akin to members of the KKK who are forced to raise black children.

Thursday, October 1, 2009

wanted, info on fine motor coordination and low score on block design test, etc.

To Anyone It May Concern:

I am a person with a neurologic impairment that presents with autistic symptoms, such as self-stimulatory behaviors and impairments in the social sphere who has a fine motor coordination impairment and perceptual motor impairment. This greatly impairs my ability to handwrite and put together puzzles and do other types of motor activities. I also had trouble learning how to tie my shoes which I was not able to do at all until I was about 8 years old. To this day, I still have trouble tying a knot very tightly and the laces in my tennis shoes often become loose and have to be retied. Also, my gross motor coordination is probably below average in that I have never been very athletic, but it is not as bad as my fine motor coordination.

On psychological testing, I score approximately 40 points higher on my verbal Wechsler IQ than on my performance IQ. On two of the subtests of the Wechsler performance, the object assembly and block design tests, I score in the severely retarded range. This is contrary to the findings of Uta Frith and other autism researchers who have found that a number of persons diagnosed with autism score in the superior range in the block design test.

I also have an abnormal score on the Bender-Gestalt test, making many more errors than a non-handicapped person. At one time, this test was considered definitive evidence that I have a brain dysfunction.

Alan Lincoln, a psychologist who used to work with Eric Courchesne, suggested this meant that I had Asperger's syndrome rather than classic autism as persons with Asperger's have been noted to be clumsy. One problem with this is that I had a speech delay at about age 2-1/2 (or perhaps younger), and Asperger's and regular autism are usually differentiated from each other by lack of speech delay in the former.

I think a good number of persons with autism have good manual dexterity and have no trouble putting together puzzles. In fact some persons diagnosed with autism have extraordinary talents for drawing. Two examples of this are Stephen Wiltshire and the lesser known Stephanie Lynn Keil.

At one time I have been classified as "fine motor coordination problem". I was also told that I have a perceptual problem. In my readings (which may be limited) I have never really come across a diagnosis like this, except occasionally for case reports of persons with Tourette's syndrome or ADHD who had problems with handwriting or fine motor coordination.

I have also heard of something called nonverbal learning disability. I am not sure if this applies to my symptoms or not.

In my readings of perceptual problems, they have always seemed to apply to persons with dyslexia or perhaps other types of reading difficulties. I have never read about perceptual problems applying to fine motor coordination skills or abilities to put puzzles together or do block designs correctly.

I was wondering if anyone knows about autistics with fine motor coordination problems or problems with block design test, if there is anything in the academic literature that has been published about this or if anyone can tell me more about perceptual problems that don't affect reading ability but affect the ability to put together puzzles etc.

If anyone has some information about this I would appreciate it if they could post a comment here or send me email.

Much thanks,

Jon Mitchell

Tuesday, September 29, 2009

Ari Ne'eman gives input on autistics in workplace

I recently came across an interesting piece about some autistics in the workplace. These always hit home with me because of the tremendous employment problems that I have had as well as the simplistic quick fixes that are given by so many, such as disclosure and Temple Grandin's things about mentors.

I see that neurodiversity's lead spokesperson, Ari Ne'eman has decided to give his $.02 worth when he was interviewed by the author of this article.

Ne'eman states:

Aside from communication barriers, other challenges can impede autistic workers, such as sensory sensitivity to fluorescent lights or inability to understand directions for a job, said Ari Ne’eman, a 21-year-old with autism who grew up in East Brunswick and founded The Autistic Self Advocacy Network.

even more intriguing statement from Ne'eman:

Social pleasantry should be eliminated as criteria for hiring and a good job evaluation, Ne’eman said.

For those who don't know, Ne'eman is a 21 (maybe 22) year old kid who has never had a job of any kind or made a dollar in his life from working-at least he acknowledged this the last time I had contact with him and discussed this issue, though I realize this may have changed. Even if Ne'eman's situation has changed (which I doubt), he still has essentially no actual work experience.

As a person on the spectrum (autism not Asperger's syndrome unlike Ne'eman) who has been fired from nearly 20 jobs, yet who did manage to work sporadically for more years than Ne'eman has been alive, I resent him trying to give input on the autistics in the workplace. Never having worked, he knows nothing of the problems that people with disabilities face in the workplace. He is totally ignorant of anything involving working for a paycheck and making a living.

Apparently from these statements we see that Ne'eman feels that it is okay for an employee to behave on the job in any manner in which they choose if they have autism. Interestingly enough this does not jive at all with his previous statements that insanity defenses should be done away with for people on the spectrum charged with crimes as this will cause them not to have equality with NTs.
Ne'eman wrote:

If Asperger’s is a justifiable excuse for criminal action, what right do we have to demand an equal place in a society of law-abiding human beings? When a college student caught engaging in arson suddenly claims Asperger’s so as to avoid being held accountable for his actions, what does it say about all other law abiding autistics?

Someone working in a customer service or waitressing job should just be able to tell the customer to "fuck off" if they are autistic or Asperger's and feel like doing this. If the employer were to fire them, they would be a bigot, violating this autistic person's civil rights.

Well, as one of my favorite human beings, Clay Adams, would say, wish in one hand, shit in the other and see which one fills up first. Ne'eman and the ND movement are dreaming if they think this is ever going to happen. That society will accommodate people with autism no matter how they behave and how offensive their behavior is.

Even more intriguing than Ne'eman's inconsistent statements saying ASD'ers should be culpable for crimes they have committed is that these statements about social unpleasantries being overlooked are totally inconsistent with previous statements he has made on this same subject in the past, which come from the previous link:

If Asperger’s means an inability to help breaking the law, all of us are incapable of avoiding lawbreaking. As someone who hopes to work in law eventually, I am not too keen on the message this sends to my future prospective employers. “Asperger’s autistics,” says this argument, “are a risk to your workplace environment. They could go off at any moment- it’s just who they are.”

Ne'eman, who has commented that because of Allison Tepper Singer's admittedly dumb remark, that this caused a bunch of parents of autistic children to go out and murder their children and that autism speaks is morally complicit with murder, certainly knows about making a faux pas. Perhaps he is worried that when he actually goes out into the world and tries to support himself that he might get into trouble due to some sort of social skill impairment his Asperger's causes him. Perhaps this is why he is so concerned about employer's judging employees by their social pleasantries.

Of course the ND philosopy on John Best (a possible spectrumite) is not consistent with this. John Best's caustic speech and blog posts towards the ND's he despises so much are not overlooked by Ari Ne'eman and the others. Virtually all of them have banned him from their blogs, constantly vilify him and never overlook his mean behavior. Perhaps the ND's should practice what they preach. If that were the case Best's lack of social pleasantry in his posts would be overlooked and all of the ND bloggers would welcome him with open arms rather than banning him.

But these sort of inconsistencies and crapolla are par for the course for ND. So let's all say it together gadfly readers, WE DON'T NEED NO STINKIN' NEURODIVERSITY!

I should be working on my novel instead of writing this blog post

I should be working on my novel instead of this blog post. However, the writing and the research that has been required to write this novel has been very hard for me. It is about an autistic poker player. I would prefer not to go into more detail other than that. I have now written approximately 59,000 words which I am estimating is a little more than half a first draft. It has been very hard to apply myself and carry out this task. There is a good chance I will never get much further than what I have now.

Since I was about 13 I dreamed of being a writer. I first attempted to write a novel at age 14. In spite of all my other impairments I was a pretty fast typist, especially for someone aged 14 in those days. I used a typewriter before personal computers and word processors were invented, which may seem like ancient history to some of my younger readers who might not even remember typewriters except as antiques. Because my brain dysfunction not only caused autism type symptoms but also caused perceptual motor and handwriting impairments, I learned how to type at a relatively young age, especially for the 1960s, so I was able to type parts of my first novel which dealt with two mentally retarded individuals, meeting and becoming friends and fighting a system that had wronged them. Writing a novel is quite an undertaking, especially for someone aged 14. It is an even greater undertaking for a 14-year-old who at the time had had practically no mainstream education at all, having been in special ed schools up until that time. I was never able to get very far into the novel and other attempts to write novels were failures. I did still dream of becoming a best selling novelist and using my disability as a selling point or gimmick to achieve that goal. This was again another pipe dream or castle made of sand (from the old Jimi Hendrix song).

At about age 38, I had a friend who was a very prolific short story writer and when I told him about my frustrations at never having been able to write a novel he suggested I try short stories first. He was right. Short stories were easier, did not require as much research and seemed to be a potential novelist’s baby steps. I ended up writing 16 short stories some of which I have on my website

At about age 45 I decided to make another attempt at writing a novel. I ended up finishing a first draft and then some rewriting, my first novel! The novel dealt with an autistic boy in an abusive special ed school and his parents dealing with the frustrating bureaucracies of the IDEA law and special education. I also met a free lance journalist who did stories for NPR stations. She felt this would be a good story for the show This American Life. Getting on this show would greatly increase my chances of getting the novel published and being able to utilize "the gimmick" that I had dreamed about. I was told my novel would probably need work after submitting it to some literary agents and getting rejected. This American Life decided not to include me on their radio show which was devastating. As I worked with various book doctors it became evident my potential bestseller would in fact have to be written over again from scratch!. My friend, Tamar Brott, was able to get another national radio show, studio 360, to do the story of my novel. The show was originally broadcast in late 2002, then about a year and a half ago Tamar's interview with me was recycled on a show which they did about autism You can listen to the show with the recycled interview here. I may be the only person in history who was told my novel was worthless and had to be written over who then a month later was broadcast reading it on an NPR show. I finally shelved the novel as a failed first novel.

I wrote some more short stories, some more non-fiction including my article questioning the autism of Bill Gates and others. Now I am working on the second novel. Not sure how well it will ever go or whether I am capable of writing a novel ready for submission for publication. However, I do question some of the ‘rules’ of the book doctor who pronounced my first novel DOA. Certainly the rule about not using adverbs does not seem applicable or it would mean that Ian Fleming and John Steinbeck were bad fiction writers.

Maybe someday I will devote more time to writing the novel than to blogging, but in the meantime I guess if I want to do a slightly easier endeavor I always have autism’s gadfly.

Monday, September 28, 2009

Sometimes I still think about medical transcription

Doing medical transcription was what I did before I stopped working because it was too difficult. Medical transcription is the job of transcribing doctor’s dictation into medical records. For example when you go to the hospital, there is a record that the hospital is legally required to keep called a discharge summary. This tells about what happened when you were in the hospital, all the tests you took, your condition, etc. Or when you have surgery, a record called an operative report is required. Also sometimes histories and physicals, where the doctor tells about the history of your illness and your results on physical examinations. There are also other types of medical transcriptions including clinic things and workers' comp reports which are easier than the hospital transcription.

In 1985 I was unemployed and having a hard time making a living. It was recommended that I undergo training with the state of California department of rehabilitation which is designed to help disabled people find work. They recommended that due to my typing ability I go into medical transcription. I was treated very badly by the department of rehabilitation I have written about this elsewhere and it does not need repeating here In spite of what these bastards/bitches did, I was able to find an entry level gig in medical transcription. It was as an independent contractor doing hospital transcription for a transcription service.

I was paid on production (standard way of paying transcriptionists) a low rate $.06/line, a line being 65 characters. I probably made about $1.50 an hour when I was first doing it.
In addition to male transcriptionists being a very small minority, the work was incredibly difficult. It involved having to know tens of thousands of arcane medical words and phrases and knowing how to spell them properly. Some of the doctors were from foreign countries and had accents that were horrifically hard to understand. Even some American doctors would slur their words, mumble and often be unintelligible. I knew I had an uphill battle if I were to be able to be a hospital transcriptionists, but all my life I have worked hard and given everything my damndest in spite of this horrific disability.

The pay was solely on production, though the work was not uniform. For example a person could make a substantially higher rate of pay from much longer reports than from shorter reports or if the doctor dictating the report was clear and easier to understand than other doctors. Some of the jobs were independent contract rather than being an employee, so you had to pay double the social security tax, there was no workers’ comp insurance and no paid vacations. Most ironic of all there were no benefits, so a person doing work indispensable to the medical profession sometimes had no employer provided medical insurance. There were other expenses that I had to incur later on, but more about that later.

The work at my first gig slowed down and then I tried to find some other things and I was fired from some places but managed to find a few places that would allow me to work for them. I was tired of making a poverty wage, so I tried to find something better, in spite of my lack of experience. I was fired again from various places. I had no idea how people were able to transcribe these unintelligible doctors and do this job correctly. Eventually I found a medical group which was clinic work and somewhat easier than the hospital stuff. There was an Indian doctor there who I had a hard time with and he insisted the other transcriptionist there do his work. I had some trouble with a few other doctors and got fired from there after about a year and a half. I had various other jobs and came very close to giving up the ghost.

After a succession of jobs I acquired an independent contract job doing hospital work, though fortunately no operative reports in which my experience was limited. I worked at home for the first time rather than in an office and I had to provide my own reference books. All of the necessary references books cost between $400-500. On top of this I had to put an additional telephone land line in my home and pay for it and I obtained the work through a device called a C phone. I had to rent this from the people I contracted for, for about $30 a month. The other option was to buy one new for $800. I had to do this work through the telephone lines and no toll free number was provided by the hospital. Fortunately it was still feasible to do this work as the hospital was a toll free number from where I lived. After being fired from this job, then reinstated, I learned I was required to buy my own C phone as supposedly the people I worked for could not legally rent one to me as I was an independent contractor.

Used, this was about $500. I had no idea where I could have obtained one more cheaply. I was able to do more lines at this job than at the others I had and my gross pay was probably $15-16 an hour or maybe more on good runs. Of course you had to deduct about 5% of that for the additional social security tax I was forced to pay as a legally self-employed person. Eventually this gig ended when Kaiser Permanente (I did the transcription for one of the chains of hospital this HMO giant has) acquired a new "health connect" system which cut our work by about 50% or more. I was not able to find another job and keep it.

As my regular readers know I have retired and for the past two years since I have retired I have been trying to qualify for SSDI which I am not likely to ever receive. C phones have become largely obsolete and transcription is now received through digitized .wav files. This meant that I was stuck with a $500 investment that I could not recoup anything on. I did try to sell my reference books on Craig’s list for a while but had no success.

I remember hearing about how Temple Grandin was claiming that medical transcription was among one of the bad jobs for an autistic person because of hearing sensitivity issues. I had to laugh at that, because albeit not perfect it was a good job for me, because I could do all the work without having to interact with others most of the time, especially when I worked at home. The joke was on me when I met Grandin last year at the 2008 ASA conference in Orlando, Florida and told her what my former profession was and how it had not completely worked out, and she reiterated her old saw about how I had entered a bad profession for an autistic person.
Of course, one can look at the perspective of the glass being half full. I did work a good portion of the time although it was difficult, but I did better at this than anything else and this did allow me to work for a period of time, although not until I would be old enough to receive retirement social security.

Though retirement has its nice aspects, I do miss working a bit. Working certainly helps people with self-esteem and self-worth. Lately I have been trying to pass the time by writing a novel. Actually I should be working on the novel instead of this blog post. However, I will post more about this in the future, maybe tomorrow, stay tuned.