Saturday, May 28, 2011

Ari Ne'eman and company oppose the combating autism act

In answer to my question from my last post, the answer is yes. Ne'eman and ASAN have gone on record as opposing the reauthorization of the combating autism act which is now currently a bill that has been introduced in both houses of congress. Gadfly wonders why this is, since Ne'eman has accepted public membership on the interagency autism coordinating committee which was authorized as part of the combating autism act. Ordinarily, this would seem a strange inconsistency. As has been documented meticulously on numerous occasions on autism's gadfly, these sort of waffling, hypocritical and contradictory actions seem par for the course for Ne'eman and ASAN. If the combating autism act is indeed sunseted then Ne'eman will lose his coveted bully pulpit to preach his fire and brimstone neurodiversity homilies and call those who oppose him perpetrators of genocide as was done when economist Michael Ganz presented his cost/benefit analysis to the meeting that Mr. Ne'eman was in attendance of.

If Ne'eman is so adamantly opposed to this law why would he not refuse his position with the IACC and refuse to be a beneficiary of a federal law and the tax dollars that go along with it?

Ne'eman makes the dumbfounding statement:

This legislation would keep in place a status quo without services, without consideration of the needs of adults and without inclusion of self-advocates. We urge Members of Congress to oppose any long term extension without needed program reforms.”

To the contrary,the status quo is including Ne'eman, a self-advocate opposed to a cure and an at least one time proponent of the idea that autism and Asperger's are not disabilities. Though the combating autism act was designed to prevent and ultimately cure autism and the IACC was authorized by the CAA for that purpose, and provided that at least one person on the spectrum would serve on the IACC, to date, two anti-cure individuals (one of them Ne'eman) serve and to date not one pro-cure autistic has been appointed to the IACC or allowed any input on how government research should be funded. This also includes Stephen Shore (the other autistic IACC member) and John Robison (also opposed to curing autism) being able to make decisions on which government projects should be funded, though Shore's doctorate is in special ed and not in a scientific discipline and Robison never even completed high school. Not one pro-cure autistic, to my knowledge, has ever been allowed to review government studies, which should have, according to the law, as its intention to ultimately find a cure for autism.

Ne'eman goes further to state:

Many self-advocates also find the language of the act offensive and out of step with the mainstream of disability policy.

If anyone is out of the mainstream of autism policy, it is Ne'eman and ASAN themselves, as most rational persons who are stakeholders believe autism is a disability and want it cured. If this were not the case, congress never would have passed the combating autism act in the first place and Bush would not have signed it into law.

So far, the combating autism act has not done much good or helped anyone, let alone finding a cure for autism. My guess is it will be passed though.

I would have been intrigued by Ne'eman's silence, given his appointment to the IACC. I guess that is no longer an issue and I now have the answer to the question of my previous post.

Thursday, May 26, 2011

Will Ari Ne'eman oppose the combating autism act this time around?

I see from a perusal of the latest post on autism speaks' blog that the combating autism act is up for reauthorization and AS is supporting this and the bills in both houses of congress which will do so. This is interesting in light of the fact that they have given rogue scientist laurent mottron a half million dollar grant when he has not only stated that the notion of curing autism is nonsensical but has gone even further, saying along with morton gernsbacher and michelle dawson that autism is a harmless condition. It is also strange in light of the fact that they have John Robison on their scientific advisory board, in spite of his questionable qualifications and Mr. Robison has referred to them, one Alex Plank and has talked to autism speaks and gotten them to cough up money for this individual's films. Mr. Plank has stated in the past that most autistics don't want to be cured and has stated that autism is a good thing in the title bar of his website, wrong planet. Plank partners with Robison's son.

To digress, gadfly wonders if Ari Ne'eman and ASAN will vociferously protest the combating autism act as they have done in the past along with inconsistencies pointed out by autism's gadfly. As has been stated before on this blog, neurodiversity fought this law tooth and nail when it was first being debated in congress as a bill. After they lost that battle, they took the if you can't beat 'em, join 'em perspective so rampant in the neurodiversity movement. Katie Miller, Ari Ne'eman and other ND's presented their agenda before the IACC, claiming that individuals such as myself should be crippled and sick when it completely contradicted the intentions of the new law.

This was not good enough for them. They were able to get ari ne'eman appointed to an actual seat on the IACC. The combating autism act specified that at least one individual on the spectrum would be a public member. Along with Ne'eman, conference superstar Stephen Shore serves in this capacity also. Shore, is an individual who is barely affected by his autism if at all. In addition to his prolific conference presentations, he has a doctorate, is an assistant professor and has published numerous books. He is also married. He opposes a cure for autism in spite of serving on a government board created for that specific purpose. To date, the number of pro-cure autistics who have been appointed as public members of the IACC is zero. Alex Plank and others may want to deny that we actually exist, but we are definitely out there. Gadfly wonders if the intent of this law and the creation of the IACC was in order to combat autism and find a cure, then why have there never been any pro cure autistics appointed but two anti-cure autistics.

If neither bill passes congress, the CAA will be sunseted and cease to exist. Isn't this what Ari Ne'eman and ASAN wanted prior to 2007? Yet, if Ne'eman and company again take to the streets with placards, he will be depriving himself of one of his two government posts to get his agenda across. Is this what he wants? Only time will tell.

Public members don't even have to attend meetings, they can just do a video phone-in thing on a website. What sense is there having an agency like this?

Well, once again, folks, welcome to another circus sideshow without a tent. I will be interested in what Ne'eman and ASAN do about the reauthorization of the CAA.

Monday, May 23, 2011

Kevin Leitch's take on a cure for autism

I see that Kevin Leitch of the Left Brain/Right brain blog has given his take on the question of whether or not autism should be cured.

I am glad that Kevin Leitch respects my desire, as a person on the autism spectrum, for a cure if one were available. However, he states that this would be a principle of neurodiversity. Again, he seems rather confused about neurodiversity whose proponents engage in scorn, derision and ridicule of any person on the autism spectrum who wishes a cure for themselves.

This is also someone who has stated that he will only seek a cure for his daughter if she asks him to. His daughter, if I am not mistaken, is nearly completely nonverbal so one wonders how much sense that makes. This is a further problem in his argument in that not everyone can choose whether or not to accept or reject a cure, as a very significant number of persons with autism are nonverbal and can't communicate their desire for or against a cure.

Furthermore, autism is a disorder of childhood whose onset is usually apparent before the age of 36 months (I realize this does not include Asperger's and some other ASD's who manifest themselves later in life). Children younger than 18 don't have the right of consent. Their parents have to make medical decisions for them and as Harold Doherty pointed out to Kev, this compounds the problem further.

The most salient question in this debate, at least in my opinion, is are those who oppose a cure for autism willing to foot the bill for the vast majority of autistics who can't work and are receiving disability or other forms of taxpayer funded assistance. And for the treatments and the methods which Kevin Leitch refers to as helping autistics be the best they can be. At least some autistics who oppose curation live on the dole and receive other services at taxpayer expense. Amanda Baggs (whose diagnosis of autism is questionable) is one of the more well known examples of this. Economist Michael Ganz has shown in various studies that autism is expensive, very expensive. Who pays this expense, oftentimes the taxpayers. Neurodiversity has used hardball tactics to dispute such notions, such as Ari Ne'eman's ad hominem attacks on Mr. Ganz, accusing him of eugenics and baby killing in what is supposed to be a professional government meeting. Joseph of the natural variation blog first gave a 30% employment figure for persons with autism which he could give no actual reference source for and used this to claim this would not be a problem in the future and at some point, we could expect nearly full employment of autistics. Later, he went even further to state that based on the adult prevalence study in the UK with only 19 people that this was merely an urban legend that autistics had a higher rate of unemployment than nonautistics and they were employed and made a living in the same manner as nonautistics.

Others have claimed that successful persons with autism such as Bill Gates and Steven Speilberg and their status as billionaires partially cancelled this out, making the net effect of autism's cost to society at least partially moot.

Kev's good buddy Matt Carey (AKA "Sullivan") has been a very vocal proponent of special education and the IDEA law. I wonder If Mr. Carey shares Kev's view about a cure being a bad thing and unnecessary. If so, how does he reconcile this with the fact that the IDEA has cost taxpayers tens of billions of dollars, has jammed the courts,and taken away money for other services financed by local property taxes such as police and fire protection which affect everyone regardless of whether or not they are autistic? Does Carey want to pay for all of these things out of his own pocket in lieu of a cure? So, assuming a cure were available, what right does any autistic person or there caregiver have to refuse a cure? Unless of course they are willing to pay the hundreds of thousands, if not millions of dollars the autistic person will cost society over their lifetime out of their own pocket. I do not believe that an autistic person or their caregiver can have it both ways. That they can refuse a cure or something that will help them function better and continue to be a burden to taxpayers.

I agree with Kev that a cure will be found at some point of time, though most likely not in my lifetime at age 55. It will not be easy though given that Ari Ne'eman can be appointed to various government positions, and rogue scientists such as Laurent Mottron and Isabelle Souleries and Morton Gernsbacher can continue to receive funding from public and private sector sources in spite of working against curing autism. Of course I remember the old Arab proverb, the dogs may bark but the caravan moves on.

Wednesday, May 11, 2011

Korean Prevalence study: Media hype and fodder for fringe groups?

The media has been making much lately of an autism prevalence study done in Korea in which a nearly 3% autism prevalence has been found. "Is autism more common than previously thought?" is the rhetorical question of the day.

Gadfly has now read this study in its entirety (excepting some supplementary data things that appear online). Michelle Dawson, on her TMOB comment board, as of a few days ago, reported that the study was behind a paywall and she still had not read it. I checked out the abstract and was able to download the whole study and read it yesterday, so apparently something changed in two days.

On a less superficial analysis of the study itself, it would seem the media is once again indulging in "yellow journalism" and a misrepresentation of the facts. Two separate groups were studied. They were very different. In statistics, they are what would be called a bimodal sample. There was a high probability group, who had been previously diagnosed and was receiving a variety of special education services. Another group was screened from the general population of a small area of Korea (not the entire country) and this was referred to as a general population group. They had never attended special education school, never received or requested
any services and apparently never received a diagnosis of autism, though they were all between the ages of 7-12. Of the 2.64/100 prevalence reported it was 1.89/100 in the general group but only .75/100 in the high probability group. Therefore, the high probability group had a lower prevalence than what has been found in recent CDC surveys here in the USA.

The study also found a male to female ratio in the high probability group of 5.1:1 which is fairly close to most reported figures in the literature. Interestingly, the general population group found a much lower ratio of 2.5:1 of males to females. To the best of my knowledge, no study of gender differentiation of autistics has found such a number. This includes ratios in the higher functioning groups which are often reported as 10:1 or higher, much higher than for the general population of autistics. Female neurodiversity activists have claimed, contrary to other evidence, that autism in females has been underestimated and that they are typical of autistic people, might they use the results of this study to bolster their arguments?

Blogger Harold Doherty seems to enjoy writing about the high percentage of intellectual disabilities in persons diagnosed with regular autistic disorder as opposed to all ASD's. The number of persons in the general population sample with intellectual disabilities was 16%, whereas it was 59% in the high probability group. Though apparently some neurodiversity bloggers have questioned Doherty's assertions, the results of this study would seem to give his arguments at least some validity as the ratio for autistic disorders to all ASD's in the high probability group is 2.6:1, whereas it is inversed at 1:2.6 in the separate general population group that was sampled.

Another limitation of this study was the response rate, 63% in the general population. The relatively low response rate in the general population could have easily inflated the prevalence, as parents concerned about a diagnosis would have been the ones to respond.

Missing data may have accounted for some of the results, as in 6.1% of the cases one of the two pages of the ASSQ surveying questionnaire were missing, the authors made some adjustments and this could have affected results.

Statistical adjustments or "weighting" were made to factor in the prevalence based on nonparticipants. The authors neglect to show any data for these.

The ASSQ survey and the diagnostic instruments such as the ADOS were of North American origin, yet were being used on a people of a completely different culture. Could this be a factor?

Most striking of all is the fact that after the survey was completed by the general population students, only 33% of them had a full assessment by a doctor giving them a diagnosis! This, in my opinion, really reduces the credibility of the validity of the diagnoses and consequently the prevalence numbers.

The authors claimed the students were able to perform okay in regular school in spite of their autism because of the structured Korean 12 hour school day. I doubt any of the authors were ever autistic children themselves with more than intact intelligence and had to spend 8 years in special education because of profound behavioral problems. As someone with first hand experience in this area, I dispute the authors contention.

Not surprisingly, this study was funded by that circus sideshow without a tent, autism speaks. This is an organization that gives rogue doctors who state that autism is a harmless condition half a million dollar research grants and who put a wealthy high school dropout on their scientific advisory board amongst M.D. and Ph.D. scientists. This individual, though certainly wealthier than 99.9% of all autistics, myself included, solicited and was awarded money for his own personal use from this organization. Apparently, for some reason, a study like this would be much more costly to do in the united states.

One wonders why autism speaks would fund a study of such questionable validity. They seem to want to appease to the ND anticure movement such as Mottron and his disciples as well as John Elder Robin Hood-in-reverse. They also want to seem to appeal to the "thimerosal causes autism" crowd and others who state that some agent in the environment has caused a huge autism increase in the past 25 years. Another likely reason was that in these recessionary times, funding a study which would show such high rates of autism could be used as propaganda purposes, claiming that autism is a much greater problem than realized and this would induce more funding. Not that the half million dollar grant given to Mottron or the free money given to quasi-millionaire John Robison could not be spent on something more useful like helping autistic adults find jobs or finding more brains to autopsy, or on neuron regeneration research to find a cure. I will be interested in seeing what sort of spin AS will put on this very (at least in my opinion) questionable study.

I wonder if this study will result in the start of a wild "fishing expedition" to find the environmental culprit that caused the prevalence of autism in Korea to be so high in spite of the huge differences in the two groups of children studied, and the questionable validity of the diagnoses (at least to me) of the general population children.

Will the deranged hate mongers in that ugly cult called "neurodiversity" use this as fodder to claim that there is near parity between the sexes in autism ratios? Will they use this as an excuse to claim that autism is no big deal because most of the kids in this study are doing so well?

Teen aged neurodiversity blogger Catatab Tabimount is using this study
which she apparently has never bothered to read in its entirety to bolster arguments for special education and social skills training.

Will others use this study to exploit their own political platform? Will the media continue to use this study (which I doubt any of the journalists reporting on it have read as I have) to continue hype about autism? Only time will tell.