Thursday, January 21, 2016

Ari Ne'eman's hyperbolic take of In a different Key

The hot new autism book that has recently come out is In a Different Key by Caren Zucker  and John Donvan.  It has some similarities to Steve Silberman's neurotribes in that they both give a lengthy description of the history of autism.  Where they differ is that the latter portrays the neurodiversity in a sympathetic light, while the former treats it with some disdain.

About ten pages of this nearly 600 page tome are devoted to Ari Ne'eman.  Ne'eman published a piece trying to refute what the authors have to say about him and the ND movement.

He starts off his diatribe by playing the murder card, one of neurodiversity's dirtiest tricks, claiming that Donvan and Zuckerberg on page 142 of their book tried to justify the murder of an autistic boy.  They never justified his murder, only stating what the man's defense attorney gave as the rationale that he had killed the boy to put him out of his misery, followed by a distorted logic while profoundly depressed.  His lawyer argued for a temporary insanity defense.  The jury didn't buy it and he was convicted and sentenced to life in prison.  The authors then go on to quote a woman who wrote an article where she only said that the father was not acting out of selfishness as she believed the prosecuting attorney had implied, but had snapped, though she realized this murder could never be justified.  At no time do the authors defend the murder.  Of course, anyone interested can go to page 142 of the book and judge for themselves.

Ne'eman writes how parents can never understand autism first hand because they don't experience what their kids do.  I'm very curious how Ne'eman has experienced autism, how it has debilitated him in any way.  I realize he's stated that he's attended special education at various times for unclear reasons.  That he was bullied for being different and would scratch his face out of frustration til it bled.  He's also stated that he has a sensitivity to velvet textures, has a face recognition deficit, and in a recent blog post commented on a sensitivity to static from a microphone.  Other than that, I have no idea how his autism spectrum disorder has disabled him in any way or how he can claim to relate to the experiences of having autism that I, Roger Kulp, and others have who are truly debilitated by their condition.  He seems evasive when he's asked about this by reporters as Donvan and Zucker correctly stated in their book.  

Next Ne'eman writes:    And far from being about blaming parents, the neurodiversity movement is about shifting the conversation to the real needs of autistic people — to the benefit of parents and autistic children and adults alike.

In fact, neurodiversity has always been about blaming the parents, going back to Jim Sinclair's Don't Mourn for Us speech where he castigates parents for wishing that they did not have an autistic child.  Not to mention Marc Rosen's calling my mother overbearing.  Some of the nastiest members of ND have stated that the reason for my autistic disability is that I had a mother who taught me to hate myself and calling her a witch and a yapping shrew.  Not to mention one individual's statement in the comments section of the Newsweek profile about me that one of the greatest threats to the autism community was my mother.  As far as I know, all of these individuals are members in good standing at ASAN and their membership dues helped pay Ne'eman's $71,000 annual salary in 2013.

Ne'eman also disputes Zucker and Donvan's statement that neurodiversity argues that autism is not essentially a disability, though this is something he's repeatedly stated over the years.

In an NPR interview in 2008, Ne'eman stated:  We're disabled by society, What disables us is, for instance, an education system that's only designed to meet the needs of one kind of student, or societal prejudices which say that autistic people will never be able to live in a community.

Though Ne'eman does not explicitly state here that autism is not a disability, most people would take this statement to believe that he's saying autism is not essentially a disability, because Ne'eman implies that with acceptance and the proper accommodations autism would cease to be a disabling condition.

As older time readers of Gadfly remember, Ne'eman's words from several years ago, which I published after he denied on Lisa Jo Rudy's blog that he'd ever said autism wasn't a disability:

 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.

A reasonable person reading these words would seem to get the idea that Ne'eman is stating that autism essentially  is not a disability.

We can also go back further in time to a statement Ne'eman wrote some years ago about whether or not Asperger's (which he's been diagnosed with rather than autism per se) is a disability:

 I happened to stumble upon your entry on a Yahoo Search for Asperger's and I'm glad I did. As a teen with Asperger's, I strongly suggest you tell your son as soon as possible. The fact is he is different. What's more, this is not a bad thing. Any individual who accomplishes anything is different. It's his right and his requirement to know who he is, and what makes him different from those around him. Furthermore,Asperger's Syndrome is hardly what one would think of as a disability. I recommend you take a look at Norm Ledgin's "Diagnosing Jefferson", a wonderful book that suggests that one of the founders of our nation had Asperger's. As I and the book can attest, it is not in spite of but because of the characteristics that set us apart from others that "Aspies", as the popular nickname goes, have the ability to do great things.

The day will come when Asperger's will be recognized for what it truly is: a difference, not a disability, and in many ways an advantage. I think you owe it to your son to talk to him about who he is and help him succeed as that person, not pretend (or worse yet, force him to pretend) to be someone else. I'm somewhat notably successful for my age and as a result I've occasionally been asked to speak to newly diagnosed "Aspies" and at a few conferences about Asperger's and special education in general. One of the things I've always tried to stress is the vital importance of recognizing the advantages of difference and not falling into the trap so many do that different is defective.


I haven't bothered to provide the links, but I think the one to the last statement about Asperger's is still there and can be found in the blog post where I first posted this.  ASAN deleted the article on their web page in which the difference is not disability statement appeared at the time I first blogged about it and the senate was still considering Ne'eman's appointment to the national council on disabilities.

Based on these statements, I would certainly concur with Donvan and Zucker that Ne'eman has stated that autism is not essentially a disability and this has been his belief all along.

Are autistic behaviors considered by some to be pathologic adaptive in nature?  Ne'eman writes:

Many unusual autistic behaviors are important and adaptive in nature. Hand flapping, rocking, and other forms of stimming serve as important means of emotional and sensory regulation for autistic 

children. 

These behaviors cause attention to be drawn to the individual resulting in bullying and discrimination in employment.  While I agree that the bullying and discrimination should not exist, we still have to conform to society, so in that sense the behaviors are maladaptive.  My twiddling (self stim) has made my life miserable.  It prevents me from getting things done during the day and is incapacitating.  It is due to a serious organic brain impairment and I wish something could be done about it.

I don't know anything about the run-in that Ne'eman had with Peter and Elizabeth Bell except for what I read in In a Different Key and what Ne'eman wrote about it in this article.  However, I only hold Pete Bell in disdain for advocating for funding of Alex Plank's and Cubby Robison's Autism Talk TV when he was an executive at autism speaks, even though his son will likely never function at the level of Ne'eman, Plank, or Robison junior.  If the Bells are still unhappy with the neurodiversity movement, I see them as part of the problem rather than the solution. 

As the neurodiversity movement becomes more prominent, I do see them as a threat toward advancement in the science and research that could lead to a greater understanding and treatments that could help mitigate if not cure autism at some future date.  I've now read Donvan's and Zucker's book and I'm glad they question the neurodiversity movement and I hope more in the media will continue to do so, since not too many people read my piddling Gadfly blog where I've been trying to take them on for years.

Thursday, January 7, 2016

Will Hillary Clinton's autism policy proposals fly?

A couple of days ago, the democratic party's leading contender, Hillary Clinton, announced a sweeping range of policy recommendations for autism spectrum disorders she says she'll attempt to implement if she's elected to the white house.  She apparently had a conference call with Ari Ne'eman and a variety of other people.  Interestingly enough, many of these recommendations reflect issues that Ne'eman's organization, ASAN, has tried to implement.  I'd like to touch upon some of them.

She recommends a study to assess autism prevalence in adults similar to what the CDC does for eight-year-old children every two years under the Autism and developmentally disabilities monitoring network which was passed when the CARES act was still the combating autism act.  The ADDM spends millions of dollars a year to produce these prevalence findings.  They track areas, just in specified areas of the country and not the entire country.  Why these specific areas are chosen is unclear.  Every two years they track different counties and cities within the same state and often change the geographical areas, so the prevalence figures have little value.  Also, it is unclear to Gadfly how the CDC prevalence monitoring helps any autistic children achieve better educational goals or occupational goals when they become adults.  How are all these people served by the millions that is spent on these prevalence studies?  The cost is particularly sensitive in that the majority of autistic can't work, can't get on disability and are either supported by their parents or live in abject poverty.   

The CDC searches special education schools and clinics where eight-year-old children are likely to present.  They won't have this luxury in adults which makes studying the adult prevalence so much more difficult.  Contrary to what the age of autism people and others who believe there's an autism epidemic that just happened in recent years in younger persons, this is the likely reason similar prevalence numbers haven't been found in older people.  Or perhaps she wants to do something like the Brugha study whose methodology was highly questionable.  It was based on a modified version of Baron-Cohen's autism quotient survey which turned out to be a poor screen for autism.  They then found only 19 people and on that made an "educated guess" that 1% of the entire adult British population had an autism spectrum disorder.  Not to mention the fact that this screening tool is only designed for higher functioning autistics and not ones who are nonverbal or have an intellectual disability.  Finding adult autism prevalence in adults is really like looking for a needle in a haystack.  I don't believe it is money well spent when many autistics live in poverty and there's a shortage of funding for general services that help parents care for their autistic children.

Hillary Clinton wants to help find jobs for autistic people vis a vis legislation such as the American Disabilities Act and transition plans and the demonstration programs for which legislation has already been introduced by some members of congress.  However, she neglects to mention how autistic people who are disabled by their condition would be amenable to be trained for various occupations to make them more employable.  Even if taxpayer or private money were available, how could it be implemented.  Most autistic people would have difficulty with schooling or learning a trade due to their disability.  Of course, Clinton takes a card out of Laurent Mottron's bag of tricks, claiming they have all these talents and abilities that will make them marketable to employers while neglecting to cite any references or proof.

The Americans with Disabilities act only requires employers to give Reasonable accommodations to disabled employees.  Tolerating tantruming, meltdowns and disruptive behavior that would occur at a job by a variety of autistic people are not reasonable accommodations.   in one case a medical resident stating that acceptance and understanding of his asperger's was a reasonable accommodation did not prevail in federal court.  As was  the case of a man with an ASD whose request for acceptance of his loud voice and asking customers personal questions. 

Hillary Clinton also wants to legislate bullying out of existence.  That's never going to happen.  There are always going to be kids who bully other kids.  It's a shame, but there's no easy and simplistic way you're going to be able to stop it.  Of course, I agree that rather than the autistic child being segregated from their peers because of bullying, that the bullies should be segregated and sent to a reform school where they're locked up for their misdeeds.  Of course, there's no more chance of that ever happening as there is of a cure for autism being found in my lifetime.  Of course Mrs. Clinton takes advice from ASAN, so I suppose she doesn't want to do anything about Clay Adams, Phil Gluyas, Marc Rosen, and other neurodiversity proponents who bully and harass and libel me over the internet.  How dare she listen to any suggestions from Ari Ne'eman who accepted membership dues and donations from these people who helped pay his $71,000 salary in 2013.  

Much to neurodiversity's chagrin, one of the things that Mrs. Clinton did recommend was continuing projects like Autism Speaks Mssng campaign to search for genes that might figure in the etiology of autism. 

However, she fails to give policy recommendations on many fronts.  What of autistic people who can't find mates?  What does Mrs. Clinton plan to do about that?  What about the fact that the vast majority of autistics who have a seriously compromised ability to work are denied disability.  If they get it at all, they have a protracted court battle that goes on for years.  Why won't she mention this? 

Worst of all, she neglected to mention one word about autism prevention or ultimately finding a cure for autism.  It would seem Mrs. Clinton is another politician who unfortunately has been influenced by neurodiversity advocates. 

Autism is not a political or legislative problem.  It is a developmental disability.  We need scientific funding and not politics to help solve the problems of autism. 

Will Mrs. Clinton's policy recommendations fly?  Gadfly doesn't think so. 

Tuesday, January 5, 2016

Where does Silberman get his info on autism genetic research?

In the continued saga of Steve Silberman strangeness, I just happened to be reading a piece written a few months ago by this person who is now the most prominent popular writer on autism related matters.  The piece has (at least to me) the offensive title Autism is a valuable part of humanity's genetic legacy. The phrase that stands out most prominently to me in the article is this:

 In recent years, researchers have determined that most cases of autism are not rooted in rare de novo mutations but in very old genes that are shared widely in the general population while being concentrated more in certain families than others. 

Since Silberman neglected to cite any source for this, I'm curious where he got this information since it completely contradicts everything that I've read about autism genetic research that's taken place in the last eight years or so.


Jonathan Sebat for instance has published research showing a significant association between autism and de novo mutations.  Dr. Sebat states that he expects that the actual cases of de novo mutations is in reality substantially higher than what he found since the techniques for identifying these genetic abnormalities are still not advanced enough to find spontaneous mutations on the genome that might be even smaller than those already identified.

A study done in Israel several years ago showed that children of fathers over the age of forty were nearly six times as likely to have an autism spectrum disorder than the offspring of younger fathers.  It was considered probable that this was the result of de novo mutations in the sperm of the older dads. 

A very recent study done at Cold Harbor Springs lab has suggested that probably half of all cases of autism are caused by rare de novo mutations on genes that have a particular vulnerability and that these are not old genes as Silberman claims, but are expunged rapidly from the population since autistic people rarely have children.  Previous research done by this group showed that some of these de novo mutations were carried by the mothers who had a protective effect against autism but their children (usually boys) inherited them in an autosomal dominant fashion.

This is just a small sampling of articles that suggest rare de novo mutations not found in the general population are a significant factor in autism spectrum disorders.   

The Slate article was apparently excerpted from the Neurotribes book.  It's been a while since I've read neurotribes and I can't recall if Silberman wrote this in the book or if he gave any references to any actual genetic studies that support his statement.   Since there's been so much science that contradicts what he says, I'm wondering if this research exists, could Silberman or anyone else cite any references since I can't seem to find any on the internet.  Maybe there's something out there, but it would seem that Silberman has made statements on the genetics of autism that have no factual basis as was the case with his statements on Kanner's work.  Even if there were such research, Silberman would have to explain why he said what he said in light of  recent research that has found that a significant number of autism cases are the result of de novo mutations.  

Saturday, December 26, 2015

Why you shouldn't buy Neurotribes: Silberman trivializes "head-banging" and "diaper-wearing"

I see that one of my favorite autism writers is at it again, trivializing the fact that some children on the autism spectrum engage in self-injury and are incontinent.  In this article, Steve Silberman was asked about one blogger who criticized his book, because he left out any descriptions of autistics who were "head-bangers" and "diaper-wearers"If the Forbes magazine reporter is not misquoting him he states:

 “Is this really how we want to describe our fellow human beings, no matter how many serious challenges they have in daily life? If we live long enough, we all become ‘diaper wearers’ eventually,” Silberman said. “Disability is a part of the human experience.”

Since Silberman seems to take umbrage to the words "head-bangers" and "diaper-wearers", i'll refrain from using those terms and just make the more polite factual statements that there are persons on the autism spectrum who self-mutilate themselves and who are incontinent.  I don't know if Leo Rosa and Mark Rimland, apparently the only more severe cases of autism that Silberman has ever encountered, engage in self-injury or are incontinent, but there are in fact some autistic people for whom this is a fact of life.  Though I have no recollection of this, I was told by my parents that as a toddler I'd sometimes bang my head into a wall out of frustration.  Though I don't do this now, I think this was before the age of five and I have no memory of this.

Most persons with an interest in autism have not been involved in it as long as I have, so they have no memory of when Ivar Lovaas and his disciples would give powerful electric shocks to children who did this and justify it, by saying that they were saving the kids from chewing their fingers off or banging their head into a wall so hard that they would receive serious injuries and stating that kids who had to experience the discomfort of wearing a straight jacket could have the freedom from the restraint.  Mr. Silberman, I know you did research on Lovaas and wrote of the historical shameful period when aversives were used, so you should know better.  Some children need to be in helmets so they won't get injured banging their heads into walls.  But I suppose Silberman and the rest of the neurodiversity crowd would just argue this is a reasonable accommodation so the head banger is just fine as long as he/she wears a helmet.  I wonder if this does not interfere with their sleep or how they'll shower and shampoo so they don't get lice or something in their hair because the parents/caretaker does not dare take the helmet off for fear that the child will get a serious injury. 

While it's true, we all have to wear diapers as infants and early toddlers, there are plenty of people who never have to wear diapers after this, no matter how old they are, like my paternal grandmother who lived to 105. 

I don't know how disability has ever been a part of Silberman's human experience, unless he believes that his homosexuality was some sort of social disability prior to 1974 before the american psychiatric association removed it from the DSM when he was seventeen. 

Mr. Silberman, if you ever happen to read this, I just want to say if the reporter was not misquoting you, shame on you for saying this,  Shame on you for trivializing this horrible disability you have no experience with.  I know in the past you told me to be careful of what I write as you did not name drop Zuckerman and Gates as autistic and that was mere speculation of a reporter that was interviewing, and I've done my best to heed your warning, but it sure looks to me like the reporter was asking you this and quoting you directly.

It's bad enough that you've stated that the reason autistics can't work is that human resource offices aren't used to nonverbal people and won't give them a communication device, that autism versus neurotypicality is no different from a windows versus linux operating system, and the fact that you've stated mark rimland does not need a cure for his autism because of the love and acceptance of the community he lives in.  However, now, in my esteemed opinion, you've hit an all-time low and I just want to tell you I feel this statement of yours is absolutely despicable if the reporter was not misquoting you and you should be ashamed of yourself.  This is another reason why everyone should boycott your book or any other book you write in the future in spite of the reporter saying we should buy it.  shame on you! Soapbox rant off. 

Sunday, December 20, 2015

Joe Buxbaum's and neurodiversity's ten year prediction falls flat

One of the tenets of the neurodiversity movement and one of the tactics they most frequently use in their fear mongering talking points is the notion of a pre-natal test being available for autism.  They claim that the genetic research funded by autism speaks and other organizations has been done with the intent of inventing a prenatal test for autism so that autistic fetuses can be deliberately aborted.

This allegation predates the days of autism speaks but goes back many years ago when their predecessor Cure Autism Now was still funding researchers.  Amanda Baggs and Laura Tisoncik  on their website autistics.org greeted the reader of their home page with a photo of an aborted autistic fetus in a trashcan with the letters CAN on it, accompanied by the caption "The real meaning of autism prevention."

ND points to the cases of Down's syndrome fetuses that are aborted.

Nearly eleven years ago, in this article scientist Joseph Buxbaum stated that there could be a prenatal test developed within ten years. Given all of the various genetic etiologies in autism, not to mention the california twin study done four years ago which points to the fact that the heritability component of autism is significantly lower than once believed. I don't think we're any closer to developing a prenatal test for autism (or any form of it for that matter) and being able to selectively abort any autistic fetus than we were ten or eleven years ago.

In this piece, Autistic self advocacy network executive Meg Evans (writing under the pseudonym Bonnie Ventura) ranted about how society was trying to deliberately engage in eugenics of all autistic people.  She put up a clock on this website for the ten year countdown beginning in 2005 for when this eugenic test would be developed.  She apparently deleted the clock when it looked like her prediction based on Buxbaum's statement was not likely to come true. 

As we approach the end of the year 2015, it would appear that individuals involved in the neurodiversity movement have failed again to be terribly insightful. 

Monday, December 7, 2015

Autism speaks appoints autistic board members, pro-cure autists again scorned.

Autism Speaks has announced the appointment of three new members to their board of directors, two of three being on the autism spectrum.  The neurodiversity movement (and possibly others) had railed against AS for years, claiming they were ogres for not ever having a single board member who had the condition themselves.  Now I hope the neurodiversity movement is satisfied.  We'll see if they call Shore and Paradiz traitors.  So far, they have not used such graphic language, but upon the announcement of Shore's appointment, The Thinking Person's Guide to autism tweeted that they hoped it wasn't tokenism.  The twitter account of boycotting autism speaks stated it was a step in the right direction but they still would not support autism speaks as long as they were pro-cure and used scare tactics to tell people how bad autism is.   

Though Autism Speaks has stated that one of their goals is finding a cure for autism, they appointed the anti-cure John Elder Robison to their scientific advisory board in spite of the fact that he was a high school dropout with no knowledge of autism science.  This did not satisfy neurodiversity proponents and Robison ultimately ended up tendering his resignation when autism speaks would not come around to his way of thinking.

Paradiz is a former professor of German literature at Bard College.  She subsequently started a consultancy business for educating autistic children with no formal training or background, except for being the parent of a son diagnosed with Asperger's.  She was apparently diagnosed well into adulthood after her son received his diagnosis.  She was formerly married to Steve Edelson who took over running the autism research institute after Dr. Rimland passed away.  She wrote a book about her son, Elijah's cup.  In this book, she describes attending the Autreat conference, one of the premier neurodiversity conferences which is presented by Jim Sinclair's organization Autism Network International.  I'm not sure where Ms. Paradiz stands on a cure for autism.

More intriguing is the appointment of Stephen Shore, who wrote the autobiographical account of growing up with autism, Beyond The Wall.  He received a doctorate in education and is a professor of special education at Adelphia University.  He also presents at conferences all over the world.  I've known Steve for many years now and he's stated that he opposes a cure for autism because it would interfere with the gene pool.  He also stated that at the time they appointed Robison to their scientific advisory board that he'd also been approached by autism speaks to serve with them in some capacity (though I'm not sure of the specifics) and turned them down because he disagreed with their views on a number of issues.  I'm not sure why he changed his mind.

The biggest disappointment is that they did not appoint my first choice, Roger Kulp.  Roger is someone on the spectrum far more severely afflicted than Shore or Paradiz.  He has looked into treatments for his problems and extensively researched the literature on metabolic causes of autism.  Roger has expressed an interest in either being on the science advisory board or the board of directors. I've written about Roger's background in a previous post so I won't repeat the info here.

I guess wanting autism speaks to stop supporting neurodiversity in a backhanded manner and taking such a cavalier attitude toward those of us on the spectrum who want a cure is too much to hope for.

Addendum:  I've just spoken to Steve Shore and he states that he's had a change of heart because Brian Kelly, the new chairman of the AS board is advocating for supports and services over a cure.  Mr. Kelly took over as chairman of the board after Bob Wright resigned in May.  Mr. Kelly  has written about parents contacting him for the need for supports and services.  Though I am not opposed to supports and services for people on the autism spectrum, I do believe that autism speaks should give more priority to scientific research with the aim of curing autism.  If autism speaks has headed in a new direction, this is certainly a disappointment.  


Thursday, October 29, 2015

New IACC Formed: Robison and ASAN picked, Roger Kulp and Pro-cure autistics scorned.

I see that John Elder Robison is crowing about the new public members, himself included, who have been appointed to the IACC (Interagency Autism Coordinating Committee for those not in the know). This agency has both federal and public members who advise the government on autism policy and decide how tax dollars are allocated.  The CARES (formerly Combating Autism Act) act which requires an IACC has stipulated that at least one autistic (maybe more) be appointed as public members.  So far, at least five (maybe more) anti-cure autistics have been appointed as public members and zero pro-cure autistics.

The post states that three autistics have been appointed to the newly formed IACC.  Besides Robison, I don't know who the other two are.  ASAN's Samantha Crane who might be so severely autistic that she could only graduate from Harvard Law school and not get a job other than working for ASAN may be one of those.  She is described in the post as "an autistic self-advocate" so maybe she is one of the other two.  If Ms. Crane is geniunely autistic, that means she's the sixth anti-cure person on the spectrum to have been appointed to the IACC since its inception.

Roger Kulp, an autistic man whose autism has prevented him from going to college and working and has to live in poverty on SSI has expressed a desire to serve.  He apparently would like a cure for autism, since he's devoted a lot of his time researching cerebral folate deficiency and mitochondrial disease.  He has approached DAN doctors and has been a subject in studies of experimental treatments at the University of Arkansas with Jill James, Dan Rossignol and other doctors interested in metabolic forms of autism.  He's read a good deal of the literature on the subject of this specific type of autism and has a true interest in finding a way to help solve these problems which have made his life so difficult.  He went to special ed schools for a number of years and has had seizure disorders and other problems.  Roger can correct me if I've made any errors about his history.

I won't come out and endorse Roger since I don't even believe the IACC should exist, but if I were to endorse someone for that position it would be him hands down.  He's also expressed an interest in being a board member of Autism Speaks.  Neurodiversity complains so much about AS not having any board members on the spectrum, I'd think they'd be happy to endorse Roger.

Though I don't want the IACC to exist, and, in fact, I support complete repeal of the CARES act (which I know congress is never going to do), Roger's appointment as a public member would have been a real boost for our side.  It would have shown the government actually gives a shit about those of us on the autism spectrum who really feel we suffer from this affliction and want to use science to find ways to solve it or even cure it.

I know Alex Plank, Michael John Carley and other individuals have claimed that all or most autistics don't want a cure.  In fact, about fifteen years ago when I used to post on the autism usenet groups Tom Mckean and I were the only autistics that I knew of who publicly stated on the internet that we didn't like our autism and wanted a cure.  Over the years, the tide has turned somewhat and I'm encountering more people on the internet who state they're on the spectrum and would like a cure, so contrary to what Plank, Carley, and others may think, we're out there.

Roger has expressed interest in being an activist and giving his input to help others on the spectrum.  I wish him the best of luck in that endeavor as it's obvious the NIMH don't care about us and I'm wondering if Autism Speaks does either.

One bright side of this is that Matt Carey of the Left Brain Right Brain blog was not reappointed this year.  Also I'm glad to see Noah Britton is gone.