Thursday, April 30, 2009

Left brain/right brain is probably jumping the gun

Much media attention has been given to some recent studies on the genetics of autismshowing some abnormalities on chromosome 5. Whether this is a major breakthrough in autism or just some other studies that have provoked some hype and hustle is open to question.

What is not surprising to this blogger is that Kev Leitch of left brain/right brain and founder of the neurodiversity autism hub has used these media reports to further a neurodiversity political agenda. However a number of Kev's contentions (and possibly by extension other neurodiversitites) are premature and unwarranted. Right off the bat, Kev makes an error and states that the article quotes the scientist as saying that if we could remove this variant as much as 25% of autism would disappear. Actually the number was 15%.

Using the 25% number (rather than the 15%) Kev then goes on to ask the question 25% of what, the individual? Autism's more disabling aspects? 25% of the population of autistics? Kev then goes on further stating that it is time for some sort of bioethics debate. That members of "the autistic community" should have a "respectful debate" with the scientific community on how this new technology should be used. By autistic community Kev obviously means neurodiversitites, since this does not include me nor probably the vast majority of persons on the autism spectrum who are too impaired to comment on write a blog post on this subject. Once again we have the phenomenon of the "royal we" that Harold Doherty so frequently writes about. Also when used by a neurodiversitite the term respectful debate has to be one of the biggest oxymorons in history. Though there are exceptions to the rule, neurodiversitites rarely treat anyone with respect. It is always, insult, attack, be abusive and "you are using this technology to try to destroy me" nonsense. As I have written before, neurodiversity is an ideology that is only driven by hatred as well as the two Freudian defense mechanisms of denial and reaction formation. They rarely want a respectful debate.

This is the age old propaganda of neurodiversity, genetic research on autism is only done with the intent of finding a way to abort autistic fetuses. What Kev and other ND's fail to understand is that genetic research is done with the intent of finding a way from preventing someone from becoming crippled and sick. Autism is a disease and a disorder regardless of ND denial. (I won't use the term disability anymore because I know that Janet Bain and other NDs will counteract that argument). If something could be done to manipulate the gene in utero in theory autism could be prevented and the individual would lead a healthy existence and not be incapacitated. This is the reason for genetic research. Or to perhaps find a way to cure autism if that is possible, but not for abortion.

In fact all Kev has to do is read what Dr. Hakonarson, the principal investigator has to say in the article I linked to which will answer his question:

With the new discovery, the hope is to identify children having these variants at birth or even in utero so intervention can begin early, Hakonarson says. Eventually, he says, the goal would be to create specific treatments to correct the gene variant.

all Kev had to do was read this one paragraph in this article and it would have answered all of his questions.

Of course Kev acts like this is something new. That these few studies have somehow elucidated some breakthrough which could cause such a great understanding of the genetics of all ASD's that the chance of aborting an autistic fetus or changing 15-25% of an individual's personality and makeup are really on the horizon. But is it new? For years, the mutation that causes fragile X has been known. Also known are forms of autism that can sometimes be transmitted via autosomal dominance in the case of tuberous sclerosis. Many other genetic etiologies are known. The genetic etiologies have probably been known for at least 10% of all ASD's for quite a while. So far the technology does not exist to either treat these individuals, abort them as fetuses or change their personalities.

Kev is not the first to be confused on this issue. Temple Grandin and Simon Baron-Cohen have also proposed that autism genes confer some sort of advantage to a person or even genius. This is in spite of the fact that in all of the genetic studies that have been done on autism, there have been findings on X chromosomes, also autosomes on many different chromosomes. An abnormality on chromosome 22 which causes DiGeorge syndrome often is associated with autism. Abnormalities on chromosome 15 and many others have been found as well. There is no evidence that any specific autism gene is responsible for a person being a great inventor or saving civilization as Grandin and SBC often claim. I have written an essay debunking this notion

Recently I went to a lecture that Dan Geschwind gave at UCLA. He is one of the people who apparently was involved in these new genetic studies. He seemed to state that one of the problems with research on genetics in autism was the fact that the sample sizes were far too small and because autism had many different genetic etiologies that they could not get a great deal of homogeneity. But with larger samples and more money spent on research it might be possible to get more homogeneity where we might be able to find a single genetic deficiency in a fair proportion of persons with autism. This could lead to better treatments or even prevention (again not abortion).

Therefore for all of these reasons I think Kev's claims are quite premature and it will most likely be quite some time before a real debate is needed for ethical issues. However, I have no qualms about funding genetic research if at some point it will help us understand this horrific disability and lead to treatments, even possibly cures and preventions and I brook no quarters there.

Ari Neeman and his merry band of crusaders at ASAN have called for a moratorium on genetic research until the issues that Kev brings up are resolved.

Neurodiversity claims to be about human rights for all people regardless of their neurologic makeup. Well, how about the right to treatment or the right to have something prevent you from becoming crippled and sick in the first place?

Monday, April 27, 2009

Neurodiversitites bizarre responses to Elizabeth Svoboda

I see that the neurodiversity movement continues to get even more media attention with the latest article about them in Salon magazine by Elizabeth Svoboda. My pain and suffering naturally are ignored by the media as well as the far greater pain and suffering of persons much more severely autistic than myself such as Russell Rollens, Dov Shestack, Connor Doherty and John Belmonte-most of these individuals have an extremely poor prognosis and will probably have to spend their entire life in a group home or other type of institutional setting at some point. It is not likely they will ever be able to write about their suffering from autism in a blog post the way the ND's can. Svoboda talks about the comparisons that neurodiversity organizations such as Jim Sinclair's ANI make with curing autism to curing homosexuality or left-handedness. Autism is clearly a dysfunction or disorder, though these two conditions are not. Many neurodiversity proponents themselves try to have it both ways and claim that autism is really a disability. (though sometimes the definition of disability is different than some people might think-a social disability as opposed to a medical disability), though I don't think anyone would say that left-handedness or homosexuality are disabilities that impair a person's life.

So far this article has received 50 something responses from various readers. Some of these responders are of the neurodiversity movement. Once again, we see the same old tired cliches and completely disproven inane arguments that are so typical of neurodiversitites.

Here are some examples:

a person named D. Robert writes:

She forgets that the largest Autism-oriented societies not only ignore
so-called high-functioning autistics and peopls with Asperger's syndrome, they
actively seek to silence them. "Autism Speaks", for example, refuses to allow
any autistic person to speak; quite a funny situation

Assuming there really were a directive from autism speaks to stifle the voices of any autistic person alleged or otherwise, how can they possibly do this. Do they have the power to use mind altering drugs on any autistic person that criticizes them? Do they have complete control of the internet so they can delete the blog posts of "The autistic bitch from hell" who at one point made the absurd claim that they only thing on autism speak's agenda is developing a test for prenatal abortions. When autism's gadfly called this gal on the carpet, she even changed her statement from only thing on agenda to ultimate goal, substituting one absurdity for another. Considering all the anti autism speaks' rhetoric on the internet and at ASA national conferences that I have attended, Autism Speaks must be doing a very poor job of silencing these people if this were the case.

Neurodiversity Grand Dame Kathleen Seidel does not fail to weigh in:

The spectre of neurodiversity activists bent on "hampering children from
acquiring the skills they need to interact with the world" is a strawman.
Although there is certainly a wide range of opinion regarding the appropriate
means to go about educating and caring for autistic children, and regarding
the meaning and/or desirability of pursuing a goal of "cure" or
"indistinguishability," I know of no one opposed to providing autistic
children and adults with the services and supports they need to overcome
specific impediments and health problems, minimize maladaptive behavior, and
achieve their fullest potential and personal satisfaction.

Interesting thing about this statement, if anyone is producing a scarecrow it is Seidel. As far as I can tell she mostly writes criticisms of anti-vax and fringe treatment things which I concede may be commendable, but what does it do for any autistic child? How has anything Kathleen Seidel written or done helped any child with autism overcome any impediments, health problems, maladaptive behavior or achieve their full potential. Nothing. She offers no alternatives for research on genetics and neuroscience that will lead to prevention and cure of this devastating disability. So yeah, Kathleen Seidel (or Dave) if you happen to read this, it is total baloney, by buying the domain name and advocating this misguided philosophy you are undermining the efforts of parents, scientists and others who seek real answers, so you are hampering autistic children from making progress. If you have any alternatives to research for a cure or prevention to be blunt, I suggest you put up or shut up.

Someone who calls themselves "the kitti" offers these words of wisdom:

"We don't want to be cured, we want to be understood and given assistance"
does NOT equal "we want your kids to bang their heads on the floor and eat
their own shit forever."
I do not know of any neurodiversity advocate who endorses NO support or
special assistance for people on the autism spectrum, or doesn't want kids to
make progress in life. But by sinking so much money and energy into cure,
cure, cure, cure, cure -- what brain difference has anyone ever been able to
"cure," no matter how much people wanted it? -- it means that millions of us
are not getting the help we need, especially adults and lower-income parents.
And it's not just "high functioning" people who aren't interested in cure.
Check out Amanda Baggs' blog, Ballastexistenz. She argues passionately against
cure, and she is nonspeaking. The overwhelming obsession with "cure" is
tantamount to telling autistic kids the world would be a better place without
them. Do you really want to go there?

The notion of ND's not wanting kids to bang their heads on the floor and eat shit forever was addressed in my comment about Seidel.

The comments about Amanda Baggs are equally absurd. Baggs is not a low functioning autistic. Some have even alleged she is not autistic at all. She at one time, was able to speak quite normally, go to schools for gifted children and attend a college at age 14. Comparing her to Connor Doherty or John Belmonte, etc. is absurd.

Someone called silenced weighs in with the old Einstein Cliche:

On the other hand, we don't want to cure Einstein from being Einstein.
There's a lot of evidence to suggest that Einstein was on the spectrum. His
social limitations and inclinations towards mechanical objects and numbers
gave him the extreme focus and perseverance and immunity to social opinion and
even his own job prospects that he needed to do the work that he did.
We shouldn't try to over-cure high-functioning autistics or we could end up
with no Einsteins at all.

These are misrepresentations of ND's about Einstein that are par for the course. Einstein had few if any social limitations. He had numerous friends was married twice and after his second wife died had multiple extramarital trysts. For those who want to say that it was because Einstein was a famous scientist, one of these marriages occurred before that and in adolescence Einstein had a romantic relationship with Marie Wintler. The interested reader can read my article on the subject

Alex Plank/Wrong Planet squeeze Katie Miller also weighs in, giving a comment on Kristina Chew's blog:

In fact, we do so much work advocating for safe and helpful treatments and services. Why do people over-generalize? How can they call us mind-blind when they are the ones not listening to the words we explicitly say?

My dear Katie: I listen to the words NDs say all the time, the calling me Joseph Goeble's, my mother being called a witch, domineering. Being cussed out by David Andrews who has the gall to call himself a psychologist who helps autistic people. It is you who are mindblind my dear. You seem to think that safe and helpful treatments and services are talking about how offended you are by the ransom notes campaign, or by the nonmalicious use of the word "retard" in the movie tropic thunder. How these things are helpful, I don't know. I am still waiting for a single example of an ND person advocating for any services, treatments, etc. instead of starting cyberwars on the internet or taking the "you huht my widdle feelings" approach.

These sort of things are par for the course for the neurodiversitites. The same tired, cliched arguments that are so easy to refute. Andrew Solomon in his New York magazine article quoted Lenny Shafer as pleading to not write about ND or give it publicity. I respectfully disagree with Mr. Shafer. I say, do write about them, give them all the publicity in the world. They will use the same old tired cliches, people will see how ridiculous they are and they will look ludicrous and people won't take them seriously. However, I do wish they would write about me also and the other autistics who want to speak about the pain and suffering that this affliction has caused us and yet, unlike so many others on the spectrum are high functioning enough to do so.

Thursday, April 23, 2009

Dr. Lindsay Oberman's interesting timeline

Lindsay Oberman is a ph.d. brain scientist with an interest in doing research on mu wave suppression in autistic children. Mu waves are electroencephalographic signals that are abnormal in some instances in persons with autism. I have discussed this work in a previous post so I won't go into all the details of Dr. Oberman's work.

Dr. Oberman also writes a blog sponspored by Psychology Today magazine in which she posts entries from time to time. She wrote a blog piece which I responded to and just now Dr. Oberman has responded to my response. I was somewhat disillusioned what seemed to me to be her somewhat positive take on the neurodiversity movement in her post and wrote a comment on her blog.

I am an autistic man who wants to be cured, though I don't feel it is probable that there would be a cure in my lifetime. However, if your work on mu wave suppression could lead to an autistic person being able to control their mu waves and this helping them to function better even in leiu of a cure I would certainly be in favor of that. What is ironic about one anti-cure autistic, Michelle Dawson, is that she works with a group that receives funding from autism speaks and has not resigned from the group in protest. None of these autistics who are against a cure for autism seem to mind money coming from an organization where the people raising the money, organizing the walks, etc. most likely long for a cure.

Dr. Oberman replied with the following after captioning her post that she respectfully disagreed with me:

believe that we will find a "cure" or atleast much more effective treatments for autism in the next 10-20 years. There are many very hard working and dedicated scientists whose line of research is just that. My line of research however, is much less "controversial". I do not claim that there should or should not be a "cure" but rather to understand the mechanisms that lead to one person to develop autism while another does not. What processes develop differently in the brain of someone with autism compared to someone without. This is my main interest and though with this knowledge, we can also begin to develop more effective treatments aiming at the cause rather than the symptoms, it also provides a better understanding as to why one person develops autism and another does not, which is important information in and of itself.

I feel this is a good way of looking at things, so I suppose she does not totally subscribe to a neurodiversity point of view. What is of most interest is her optimistic statement which seems to me to be implying that some major breakthrough could happen as soon as ten years from now. Of course I guess I will find out if I am still living in ten years from now and even still living in twenty years from now which is a distinct possibility though not a guarantee set in stone. There is an old Danish proverb Death does not blow a trumpet.

What intrigued me about this saying is that when I first became a research subject for Eric Courchesne's group and just before I had my first MRI scan, I met Rachel Courchesne who was his wife at the time. I asked her if she felt that the research they were doing could at some point perhaps translate into better treatments for persons with autism even if not a cure. She stated that she believed that in 20 years, there was a good chance the research they were doing could translate into better treatments. A similar timeline to Dr. Oberman's but not quite as optimistic as her ten year leeway. Ms. Courchesne made this statement to me in April, 1989 exactly twenty years ago. Twenty years and much more diagnoses of autism later, this prediction did not come to fruition. ABA is still the treatment of choice, gaining huge ground in the U.S.A., particularly since the 1991 legislation adding autism as an eligible category to receive services under IDEA. There do not seem to be any advances at all.

I concede it is certainly possible that if in theory autistic persons could learn to control their mu waves with neuro/biofeedback perhaps some autistics could be helped immensely from this treatment. The problem with Dr. Oberman's work per se, is that her recent study only had 9 subjects, all of whom were males and all of whom were at least moderately high functioning. It is likely she had to exclude fairly low functioning persons from her work, because they would not have the necessary compliance to sit still and have valid brain wave measurements taken. Dr. Oberman did the right thing and conceded the limitations of her study in her paper, acknowledging the work might not be applicable to female autistics or lower functioning male autistics.

I wonder if Oberman's prediction will come true. I guess in ten years' time if I am still alive and I still have this blog I can write about it again. Time will tell.

Monday, April 20, 2009

Autism in the workplace: hypocrisy from autism speaks

Since last Friday I see that the favorite organization of a lot of people, everyone from the neurodiversitites to the mercury militants to the biomed treatment advocates has once again engaged in superficial showmanship with their new program autism in the workplace. AS starts off stating how dire the problem of lack of even semi-gainful employment is for autists:

Unemployment and underemployment remain challenges for people with autism and other disabilities. A 2004 Louis Harris Poll found that only 38% of individuals with a disability were employed, as compared to 78% of those who did not have a disability. It is estimated that more than a quarter of adults with a disability live in poverty, and more than seventy-five percent earn less than $20,000 per year (Bowe, 2006).

Then we see some interesting videos of persons with autism in the workforce, trying to show autistic employees in a positive light. Of interest is that I am acquainted with one of the participants, Stephen Wise. Steve lives in Los Angeles and we would run into each other from time to time at AGUA (Adult Gathering United Autistic) meetings. This is an organization that I helped create along with Jerry Newport and I am one of the charter members. AGUA has now been in existence for 16 years. A movie, Mozart, and the Whale was made that was inspired by some events that happened at AGUA. The character, Gregory in the movie was inspired by your humble blogger.

It is my belief that these videos and this new crusade by AS is nothing but a horse and pony show. Steve's job was obtained for him through the Jay Nolan center not AS. I am pretty certain autism speaks had nothing to do with securing employment for any of the other people in these videos. If anyone can provide me with evidence to the contrary I stand corrected. This would seem like exploitation on the part of AS.

I should be somewhat surprised that the angry neurodiversitites who detest AS so much have not written about this on any of their blogs. But what is so typical of them is that they miss the forest for the trees. Somehow it gets under their skin that there is no person on the autism spectrum on the board of directors. They seem to go even further implying that one of their own should be appointed to that coveted position, someone completely hostile to the goals of prevention and cure that AS has. But what is really more important, one person who would have an unpaid position of influence helping to run the show behind autism or perhaps the organization actually doing something to help people find jobs or even employing them in their own organization for paid jobs? I believe that the latter is a far more important priority than the former.

Does AS itself have anything to say in the manner? We see here the following statement on the part of the autism in the workplace webpage:

Autism Speaks provides internships to adults with autism in its offices, and also outsources work to companies that employ people with autism. The organization is currently exploring the creation of employment opportunities, as well.

Well in the opinion of this blogger that does not cut it at all. Internships mean an unpaid position. At the very least they could employ someone with autism to be a file clerk in their office and give them extra help in doing the job so that they would not be fired. In fact, one of those persons could even be me. I do not believe that it is ethical for AS to have started this program until they finished actually exploring the creation of those employment opportunities for people on the spectrum but actually created them as well and then had the person(s) complete a 3 to 6 month probationary period on the job and then put a video about these people and not ready made autism workers for their own exploitive ends. At the risk of repeating myself, I believe that autism speaks should just be an organization that funds scientific research with the intent of curing and preventing autism. Engaging in lobbying, advocacy and awareness as well means that too many cooks spoil the broth. The organization tries to do too much at once does not get enough done and it won't hasten a cure and/or prevention for autism being found. Of course, something like this autism in the workplace campaign had it been done in a proper and ethical manner as I stated above would be an exception to that rule the way I see it.

I find it interesting that in spite of all of these activities autism speaks is basically a charitable organization. I believe that they should actively recruit persons with autism to work directly for their organization as paid employees, not interns, not contractors. Being that they are a charitable organization perhaps autism speaks should remember the old saying: "Charity begins at home"

Saturday, April 18, 2009

A rival to Autism speaks?

I have just gotten an e-mail from a new organization that has formed called the autism science foundation. This organization seems to be very similar to autism speaks, except obviously it will be much smaller. There are some differences. The organization is being started by Allison Tepper-Singer who was featured in the infamous video in which she stated that she contemplated driving off a bridge with her autistic child in the car. She will be the president of the organization. Also Tepper-Singer recently resigned from her position at Autism Speaks due to the fact that she does not believe that vaccines are a causative agent in autism. Given the fact that Sally Bernard is on the board of directors of AS and the wish to appease parents who cling to the misguided belief that vaccines cause autism, AS has started to fund projects that seek out a connection between autism and vaccines. Tepper-Singer in her email emphasizes the fact that the autism science foundation will not fund research related to vaccines and conceded that the evidence has exonerated vaccines as a cause of autism. She has started with organization with Karen London who along with her husband, psychiatrist Eric London started NAAR (National alliance for autism research) which along with CAN (cure autism now) merged with autism speaks about four years ago. Also Paul Offit who wrote the book false prophets of autism, which goes into the work showing vaccines do not cause autism is also on the board of directors. For these reasons it seems there is a good chance that it will remain a "pro-vax" organization. However, one never knows what pressure from the many parents of autistic children who insist their child became autistic because of a vaccine will influence this fledgling organization at some point. Also on ASF's board of directors:

Michael Lewis, attorney, mediator and grandfather of a child with autism. ASF’s Scientific Advisory Board, still in formation, includes Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School; past program chair of the International Society for Autism Research); Dr. Ami Klin (Yale Child Study Center); Dr. Harold Koplewicz (NYU Child Study Center); Dr. Sharon Humiston (University of Rochester); Dr. Eric London (NYS Institute for Basic Research in Developmental Disabilities and co-founder of NAAR); Dr. Catherine Lord (University of Michigan); and Dr. Matthew State (Yale Medical School).

It will be interesting to see how and to what extent this new organization becomes another whipping boy for the ND movement. I still remember the pre-autism speaks days when there was just CAN and NAAR. CAN and by extension Jon Shestack and Portia Iverson got the brunt of the ND criticism and abuse, including's infamous and tasteless abortion cartoon. NAAR generated some protests but not to the same extent as CAN.

The organization is small, just starting out and clearly does not have the capital and resources of autism speaks, so it will remain to be seen how long they last and what sort of influence they have. Of course, one possible small advantage that they have is Tepper-Singer's seat on the IACC. With Singer tendering her resignation from AS, autism speaks has no representation on the IACC. Ironically enough, the neurodiversity movement, with Stephen Shore at the helm and who is another one of the public members ,has more representation on the IACC than AS itself, in spite of the fact Jon and Portia are on the board of directors of AS and it was CAN who originally lobbied for the combating autism act, whose only intention was to find ways to prevent and cure autism.

One other thing, on perusal of ASF's web site, that I am unclear on, is the extent that they will do lobbying of government agencies in the manner that AS has done. If they do, given that they are small and just starting out they will not likely have the same influence. I am a believer in the old saw of too many cooks spoil the broth. It is just better if these organizations fund scientific research that will lead to advances in the understanding of causes of autism and its possible treatments, assuming prevention and cure may not be realistic goals in the foreseeable future.

Personally I am glad this second organization was created. Having one monopoly like Autism Speaks leads to an organization that will get less good things done. I don't feel that autism speaks should be the only game in town. Also, there are alternative organizations to go to for scientists who need funding. Also, their emphasis on vaccines not causing autism is welcome. Vaccine research has just been one dead end after another and has nothing promising to offer.

Time will tell what the future bodes for the autism science foundation.

Thursday, April 16, 2009

More mythology from neurodiversity

I see that the neurodiversity movement has come out with a new public service announcement film:

The film shows four members of the neurodiversity movement with their pollyannish statements about how autism is not a tragedy, they are not empty shells and that it is okay to be autistic. The film features four different individuals who state that they are autistic. I will give my take on these four individuals not in the order of their appearance. The first person in the film whom I will comment on is an apparently nonverbal autistic who only communicates using a communication computer. His name is Jacob Pratt. I am giving my take on Jacob first because I agree with his statement that he is autistic secondarily and a person first and that he should be treated with respect. However, what is truly ironic about this statement is that it contradicts one of the tenets of the ND movement that autism is who they are. Their brain is hardwired from birth and if a cure were ever found for autism, it would kill them in the sense it would completely change their entire brain and turn them into another person. Research on the etiology of autism has probably not yet advanced to the point that it completely disproves this allegation; however, as is typical, the neurodiversitites have no proof for this completely speculative idea. It certainly contradicts my experience as having my ability to read intact, yet I have perceptual motor deficits that impair my ability to handwrite and put puzzles together. There is a 40 point discrepancy between my scores on the verbal IQ test and the performance IQ test. This suggests that part of my brain is intact and part of it is impaired, so I can give that take from my own personal experience if no one else's.

The second person in the video is a young man named Ben Liske who can't possibly be older than 12 years old. He states that at this young age he is a mathematician, musician and scholar and that with the right supports he can do anything anyone else can but not in the same way. Given the fact he is not yet an adult and has not even attempted to make a living, this is certainly a premature statement. If neurodiversity has a different way that anyone with autism can do things as well as anyone else, I am sure that Harold Doherty, JB Handley and other parents who long for a cure for their children would embrace these with open arms. Naturally they give no solutions other than Ari Nee'man's automaton "being anti-cure is not being anti-progress". More about Neeman later.

The third person they have on this video is Deena Gassner, a person with alleged autism who is so high functioning that she was able to get married, have a child and become a licensed clinical social worker. I have first hand experience with Deena as I have met her in person at a couple of different national ASA conferences. She does not seem to be autistic to me and what impairments she has or what would lead any physician or clinical psychologist to diagnose her as autistic is beyond me.

Last, but certainly not least is ASAN president Ari Nee'man who uses the "royal we" that Harold Doherty has written about in his blog: "our lives are not tragedies" "The national conversation about autism is happening without us". Nee'man is someone who was born in approximately 1987 and was not diagnosed with Asperger's (not classic autism with a speech delay) until he was 12 years old. Apparently, before that time, he was thought of as having ADHD. He certainly has nothing in common with people with severe autism such as Dov Shestack, Connor Doherty, and John Belmonte. John Belmonte, the brother of brain researcher Matthew Belmonte, cannot speak and barring a miracle will have to live in a group home under 24/7 supervision for the rest of his life. Nee'man's empty platitudes offer no solutions to someone like this. He has no solution to the fact that I have to be unemployed and celibate, that I can't wrap presents at Christmas time or have handwriting that is only semi-legible that is a strain to get out. He has no solutions to the fact that I cannot interact with people, have few friends and cannot help making funny movements in public and drawing attention to myself or the multitude of other problems that make my life hard. All he wants to do is speak for everyone on the autistic spectrum, including those of us like myself who had a speech delay at age 3 and are high functioning autistic rather than asperger's.

I would also like to comment on Nee'man's completely fallacious statement that the national conversation about autism is happening without him and others of his ilk. In 2006 when congress was debating the combating autism act Nee'man and his friends literally protested with placards. Yet when this law was passed he and the rest of the neurodiversity hypocrites embraced this law and immediately went to the IACC with all sorts of suggestions. The IACC had no problem apparently listening to their agenda. In spite of the fact the only purpose of the CAA and the IACC's creation was to cure and prevent autism. Therefore, I believe Nee'man and the other neurodiversitites are being given a free pass to which they are not entitled.

If neurodiversitites have a solution to the problems of autistic people, then they should state them on their web pages instead of wasting time, making such superficial vacuous videos. They have provided no evidence that their quick fix solutions to the problems of autism are anything other than myths. I must agree with Nee'man's statement at the end of the video that it is time to leave old stereotypes behind. It is a shame that Ari cannot practice what he preaches.

Tuesday, April 14, 2009

More nonsense from ASAN

I see that my friends from the autistic self-advocacy network are at it again. This is the organization that was famous for pressuring the autism clinic in New York to eliminate the ransom notes campaign for the language that they perceived to be insulting. Also, they are well known for the statement that Ari Neeman, their president, made on the Good Morning America television show, "being anti-cure is not being anti-progress". Though it is puzzling to this blogger how eliminating the ransom notes was any sort of progress that could be substituted for a cure. More on that later though.

In this instance, a lady named Meg Evans who states that she is autistic, yet is high functioning enough to be married takes umbrage at the language used on the Cincinnati Marathon web site that is used to raise funds for autism. Ms Evans states:

On your front page, promoting the Run/Walk for Autism, there is a comparison of autism to cancer, diabetes, and AIDS, which misleadingly causes people to view autism as a disease that their family members are at risk of catching

She further goes on:

In fact, autism is a developmental condition, not a disease; it does not make anyone sick or kill anyone, and it cannot be acquired from contact with autistic people. Comparing autism to deadly diseases such as AIDS can cause uninformed people to shun autistic individuals out of a groundless fear that they or their family members will somehow catch autism. For the same reason, autism should not be characterized as an "epidemic," which is a term that usually refers to an outbreak of contagious disease.

Let's view each of these statements in context. On perusal of the run for autism organizer's web site we see that the only comparisons made to Cancer, diabetes and AIDS are the citing of the CDC's 1/150 prevalence number for autism and stating that autism is more common than these other conditions. I am not sure that this is saying the conditions are analogous. As far as someone "catching autism", the only one of three conditions cited that someone can get with contact with another human being is AIDS. AIDS can only be transmitted through sex or a blood transfusion, it is not like transmitting a cold or a sore throat, so we see a very specious comparison on the part of Ms. Evans. Even if there was a comparison of autism with AIDS in the fact that they both could be considered medical conditions, certainly no one in their right mind would read this statement and conclude that someone could catch autism.

Ms Evans also goes on to state that autism is not a disease and that autism should not be viewed as an epidemic, because the term epidemic is used to connote outbreaks of infectious conditions.

My dictionary defines disease: A condition of the living animal or plant body or one of its parts that impairs the performance of a vital function. The fact that autistics often can't make a living, in the more severe cases, can't speak, can't fend for themselves, have uncontrollable behavior that causes them to get into trouble or self-mutilate certain is the impairment of a vital function, so i must respectfully disagree with Ms. Evans' definition of disease.

My dictionary defines epidemic: 1. affecting or tending to affect many individuals within a population community or region at the same time. excessively prevalent. I do not know if the prevalence of autism is actually increasing or not. As is the case of neurodiversitites, I do believe that at least part of the increase is due to more people actually being diagnosed than were diagnosed before and not necessarily a real increase in the numbers; however, that is neither here nor there. The point is, that an epidemic can be used to refer to an increase in any phenomena, not necessarily a medical condition.

Autistic people are largely unemployed. The problem of celibacy and loneliness does exist for many of us. There are problems with housing, self-mutilation, phobias and academic performances. How, this current crusade of Ms. Evans' How Ari Neeman's pro-progress, anti-cure metaphors are helping anyone with autism is beyond me. I won't attempt to speak for most or all autistics as many neurodiversitites seem to have an inclination to do. However, many of us do suffer, many of us have the problems stated above, myself included. This is in addition to the perceptual motor deficits that I have (which I realize not all autistic people have) which makes it practically impossible for me to handwrite and wrap presents at Christmas time. How does the absurd claim that statements saying that autism is more common than AIDS, cancer or diabetes lead anyone to believe that autism could be contagious help anyone with autism?

What of Ms. Evans' statements that autism does not kill anyone. In my own personal case, I demonstrated poor social judgment at age 17 and let a friend without a driver's license drive my car while we were drunk. He crashed the car into a wall and I went through the windshield and was injured but did not die. I could have died at age 17. What about Ashley Brock who died of accidental drowning due to her autism? There was also a boy who was run over by a train in North Carolina. Also, I don't recall the name but there is an autistic man who killed his mother. This has recently received some media attention. It could certainly be argued that this woman would be alive today if her son had not had autism. There was also an article in a recent Journal of Autism and Developmental Disorders about a 10 year old autistic girl who threw her six month old baby sibling out a window and killed them. Certainly Ms. Evans' arguments that autism can't kill or have the potential to kill are fallacious.

When we look at the t-shirt on the web site that Ms. Evans links to, we see the moving message on it: Because I love someone with autism. So the organizers of these fund raisers are certainly not trying to offend people. They are only raising money out of love for their children, grandchildren, nieces and nephews. Neurodiversitites seem to have some trouble realizing this.

Once again ASAN's statements and actions truly baffle me.

Monday, April 13, 2009

mirror neuron minutae

One of the hottest areas of brain research today is that in the field of mirror neurons. Neuroscientist Marco Iacoboni has written a book on that subject entitled "Mirroring People". Your humble blogger has just finished this book. Mirror neurons are neurons that fire not only when a person is doing a motor action but also when the motor action is being viewed or a sound associated with the motor action is being heard. One of the most interesting things about mirror neurons (at least to your humble blogger) is that there is strong evidence that they are involved in the etiology of autism.

Mirror neurons were discovered by accident in a laboratory in Italy. Neuroscientists were doing research on neuron firing in the motor cortex and premotor cortex area of macaque monkeys, particularly in the area called F5 in the frontal lobe. When one of the researchers was eating something or picking something up to grasp it, the neuron fired. The neurons also fired on hearing the sound of an action. Intrigued, the researchers ruled out all of the possibilities other than the neuron was firing upon viewing the action or hearing the sound. Therefore, it seemed that these neurons had to do with imitation of an action or learning an action.

For obvious reasons, the experiments involving the implanting of electrodes in single neurons that had been done on the monkeys could not be done on human beings (at least not ethically). However, using functional magnetic resonance imaging, which measures the level of blood flow to certain areas of the brain, experiments can be done on human subjects to see if certain areas of the brain are activated when doing a given task or viewing a picture or face. It was shown that both during movements and viewing of pictures of the movement the areas of the human brain that were analogous to those of the monkeys in the experiments were active. This suggested that human beings have mirror neurons as well.

The area F5 on the macaque monkey motor cortex is equivalent to Broca's area in the human brain. Broca's area is the center that is responsible for expressive speech. The ability to imitate it would seem comes from mirror neurons. As most interested in autism know, one of the cardinal symptoms of autism is a speech delay before age three. There are studies going back to the 1950's showing that autistics have deficits in imitation. Research was also done showing that mirror neurons played a factor in the emotion of empathy as well as the ability to make friends. In experiments done in which children were asked to imitate facial expressions, the part of the brain near broca's area was measured by blood oxygen uptake using fMRI. It was found that there was a correlation between activity in these brain levels and the number of friends and playdates these children had (Pfeifer, et. al. 2008) .

For these reasons it was speculated that mirror neurons might play a role in the etiology of autism. At about this time Vilayanur Ramachandran and Lindsay Oberman at the University of California at San Diego were doing research on what is called mu wave suppression in autistic children. Mu waves are a form of brain waves, which are electrical impulses which eminate from the brain that are reflective of activity (or inactivity) in various parts of the brain. Mu waves are suppressed in typical people both when they move parts of their own body and observe movement of those same body parts in other people, analogous to the mirror neuron firing in the monkeys that I discussed previously. The research of Ramachandran and Oberman found that when autistics moved their own body parts, their mu waves were suppressed. However, upon observing the motions of other people or a hand on a video, the autistics had no mu wave suppression. One of the limitations of this work was that all 9 of the autistic subjects were high functioning males. They acknowleged the limitations in their paper, emphasizing they were not sure whether or not these findings could be generalized to lower functioning autistics and female autistics. However, this is a problem that often occurs in autism research. Compliance is needed by the subjects in order to study brain waves or brain activity measured by an fMRI. The lower functioning autistics would not be compliant and would move around and this would cause artifacts in the measurements, making the findings worthless. Though autistic males outnumber autistic females by about 4 to 1, the ratio may be as high as 10:1 in the higher functioning groups. Ergo, in many research studies we see a biased sample of research subjects as opposed to the entire population of autistics.

Mirella Dapretto (who happens to be Dr. Iacoboni's wife) has also done a study comparing activity of subjects with high functioning autism in an area of the brain called the pars opercularis (which is a part of broca's area) in which mirror neurons exist to normal controls matched for approximate age and sex (again all of the autistic subjects were high functioning males). She found significantly greater activity in this area for the autistics. Additionally she found negative correlations between the activity levels and the severity of the autism as measured by the ADOS diagnostic scale.

One of the findings on autopsies of autistic brains has been abnormalities of the limbic system which controls emotion in which exist the hippocampus and amygdala. I seem to remember autopsies have shown differences in the amygdalas of autistics as opposed to normal controls. An area of the brain called the insula connects the pars opercularis (and maybe the rest of Broca's area also) to the limbic system. A variety of researchers besides these have also done experiments showing of a mirror neuron dysfunction in autistics. So there is strong evidence suggesting that there is a dysfunction in the pathways between the pars opercularis and limbic system connected by the insula.

There is also a mirror neuron system in the parietal lobe of the brain as well as the frontal lobe. Riitta Hari has done research using a technology magnoelectroencephalogram which picks up tiny magnetic activity in various brain areas with Asperger's subjects. She asked them to imitate simple movements of the mouth and face while using this technology and measured the activity. Her research demonstrated abnormally slow communication between the mirror neurons in the frontal lobes and mirror neurons in the parietal lobes of these subjects. It was speculated that this faulty wiring might be responsible for the social deficits of people with Asperger's.

There are also gender differences in mu wave rhythms of the mirror neuron system I have to admit I have not actually read this study but I have linked to the abstract. If anyone is interested I guess they can pursue the matter further. I believe this may be relevant in light of the high male to female ratio found in autistics.

Anne Corwin, another of the infamous neurodiversity rogues and author of the existence is wonderful blog gives her take on mirror neurons. She trots out the traditional "different not broken" neurodiversity homily in her essay. The interested reader can read the link.

I am not sure what to make of this research. Prior to this research a lot of the emphasis in autistic neuroanatomy was on the cerebellum and the limbic system. The insula connecting the the pars opercularis and the limbic system could give an explaination for the limbic system involvement in autism. However, what of the cerebellar abnormalities that have been found in autistics in various studies, albeit with mixed results. What role do the mirror neurons located in the frontal and parietal lobes play? Also, why don't people with Broca's aphasia from CVAs exhibit the same behavioral characteristics as autistics since part of their mirror neuron system has been damaged also. As I have mentioned in previous blog posts, Eric Courchesne (and Matthew Belmonte also) have told me that developmental lesions are different than adult lesions. When I speculated to Courchesne that because of the speech motor output problems of autistics perhaps autism could be either a problem in Broca's area or the connections between Broca's and Wernicke's area (Wernicke's area in the temporal lobe is responsible for the reception of language as opposed to the expresison of language of Broca's), he replied that because of the differences in developmental and adult lesions this might not be a fruitful area of research. The recent findings of evidence of a dysfunction in the mirror neuron system of autistics would not seem to bear out Courchesne's contention.

If anyone with more expertise in neuroscience than I have happens to read this, I would certain welcome comments and speculations from them. I know that irrational hope makes me think that mirror neurons may be the holy grail of autism work rather than yet another seeming dead end street. I just wish that mirror neuron research could lead to more effective treatments or even possibly the cure that neurodiversitites such as Anne Corwin detest so much.

Wednesday, April 8, 2009

autistic man hits baby

Yet another story that I am surprised that Estee Klar-Wolfhond will not blog about in her joy of autism blog. A storyabout a man with autism hitting a baby. The 28-year-old man hit the baby who was six months old and left a bruise on its head. When questioned, the man acknowledged that he needed help and hoped to get it. Yet, when asked why he hit the baby he exclaimed, "it was an accident, don't worry about it." Yet one has to wonder how a man could hit a 6 month old baby by accident.

The man's mother was shopping with her son in a K-mart in Wichita Kansas when this happened and says she cannot keep complete control of him and was worried about the baby being harmed. Apparently the baby had a bruise and other than that was not seriously harmed. She states that he has harmed children before.

The mother acknowledged that her son did not get much help growing up. Naturally this lead to an autism expert claiming that autistics do these things because they don't get early intervention, using this tragedy as an opportunity to get behind the figurative bully pulpit and preach the mantra of early intervention being some sort of solution to the problems of autistics. This was followed by a shameless plug for this autism expert's special education school in Wichita. Of course, there is no proof any intervention in this man's childhood would have curbed his violent tendencies.

The baby's mother contacted a prosecutor in the Wichita city attorney's office. She was told charges would not be pressed against the man because of his inability to know right from wrong.

The boy's mother has asked for possible solutions to her son's problem with hitting children. She stated in the article, "what am I supposed to do, lock him up, shoot him? I wish society would give me an answer." I wonder if anyone from the neurodiversity movement could give the mother an answer, since they seem to believe autism needs to be accepted rather than cured or prevented. They don't want autism speaks to fund science that would find a cure or even better treatments for someone like this, or find a way to prevent the man from becoming autistic in the first place.

Chaotic idealism would just state that the mother needs to write a post on wrongplanet or aspies for freedom and one of the experts at either of these two pristine web sites would offer her a solution.

Ari Neeman would just say that being anti-cure is not being anti-progress and not to worry.

Somehow I wonder if either of these solutions would cut it or if someone from the ND movement has some answer that would help this man and his mother. Or do they still want to say this behavior should be accepted and not be cured or prevented?

Also, I am waiting for all of these exploitive special educators to offer proof that their schools and interventions would prevent something like this from happening.

Friday, April 3, 2009

The Locus Coeruleus and autism

I just thought that I would have to comment on the new study that implicates the area of the brain known as the locus coeruleus with autism. The locus coeruleus is the source in the brain of the neurotransmitter norepinephrine. The hypothesis originates from the fact that there is anecdotal evidence that when autistic children get fevers this mitigates their symptoms. The locus coeruleus is involved in fever. The authors go on to speculate that autism could just be due to dysregulation of the locus coeruleus and because of this it could make it easier to mitigate the symptoms of autism or possibly even find a way to reverse it. I have only read the article in science daily that I have linked to and the abstract of the study, so I can't comment on all of the specifics of the study. From what I have read though it sounds more like a hypothesis than the authors having any empirical evidence that the LC plays any role in autism. So, I won't hold my breath as far as any major breakthroughs in the treatment of autism as a result of this research. However, when reading things like this, it helps to give hope that someday, something can be done to mitigate or cure this horrible tragedy that afflicts so many persons. The authors go on to emphasize in the article that this does not mean something can be done for autism as a result of their research in one fell swoop (their words).

If the prevalence of autism is really 1 in 150, then if this becomes more than a hypothesis and further research validates this as something that could help autism, then this would provide an incentive for drug companies to come up with some norepinephrine agonist (a drug that will create more norepinephrine in the brain presuming autism is caused by a dysregulation of this neurotransmitter) and much money would be made and autism at the very least would be as treatable as schizophrenia is currently with anti-psychotic medications even if the medications don't cure autism. This might make ABA as a therapy for autism just as obsolete as hydrotherapy is now for schizophrenia. Hydrotherapy was the treatment of choice for schizophrenia in the 1940s before anti-psychotic medications were developed and used for schizophrenics. Like ABA, its proponents touted hydrotherapy as the only scientifically proven treatment to ameliorate schizophrenia. I realize that these are just dreams now and it is unlikely such a medication or treatment for autism will be invented based on this research in the foreseeable future.

I have emailed the lead author of the study Dr. Mehler and have asked him for a .pdf copy of the actual study itself so I will have more to read than just the science daily article and the abstract. If I get the actual paper I may edit this post or post a follow-up post.

What is most interesting of all to me is that about 20 years ago, when I had my first MRI scan by Eric Courchesne's research group, I had a similar speculation that the etiology of autism might be caused by a dysfunction in the locus coeruleus and that norepinephrine might be involved in the etiology of autism. The dorsal tegmental bundle is a tract that comes from the locus coeruleus and is one of the two main tracts of neurons that spreads the neurotransmitter norepinephrine to the various areas of the brain that use this substance to generate chemical messages that control various functions of the brain. The axons of these fibers project to the neocortex, hippocampus and cerebellar cortex and medulla. The cerebellum has been implicated in autism and various studies have shown a loss of purkinje cells in the cerebellum of autistics as opposed to normal controls. Norepinephrine is one of the two neurotransmitters that are used by purkinje cells The other one is GABA (gamma amino butyric acid). Norepinephrine acts as an inhibitory neurotransmitter. This might be the reason for the inability to control certain movements in autism and "stimming", lack of an inhibitory neurotransmitter. More evidence of the norepinephrine/stimming theory comes from the fact that some of the axons of the dorsal tegmental bundle terminate on the superior cerebellar peduncle, which is one of the three structures that attach the cerebellum to the rest of the brain. It has been found that stimulation of the superior cerebellar peduncles is reinforcing. Subsequent studies have found ablation of the locus coereulus did not abolish this reinforcing effect. I think it is possible that norepinephrine in the typical brain acts as an inhibitory neurotransmitter and suppresses certain things in the superior cerebellar peduncle. If this system was dysregulated it could cause lack of inhibition causing autistics to self-stimulate in order to get this reinforcement.

As I mentioned before, these fibers also travel through the hippocampus. This brain structure is responsible for short term memory. Persons who have had severe epileptic seizures have sometimes had this brain structure removed. These persons can no longer form short term memories and they constantly live in the past. I wrote a short story that was inspired by this phenomena.

Various studies have found abnormalities in the limbic systems of persons with autism. The hippocampus is part of the limbic system. Also persons with autism often have extremely good memories. Some of them are even savants with photographic memories. It is possible that the lack of an inhibitory neurotransmitter such as norepinephrine could produce this effect, opening up structures that would be normally inhibited in a typical brain.

I discussed this theory with Eric Courchesne at the time I was his research subject and he said it was an interesting theory that could possibly be valid, but only science would be able to tell. I wondered if it would be possible to do an MRI scan of the cerebellar peduncles the way he had scanned the cerebellum and had found abnormalities in the cerebellar vermi of persons with autism. He stated that such a study could not be done because the cerebellar peduncles were only a few millimeters and too small to be measured with MRI scanning and compared to typical controls. Of course this was many years ago and things may have changed so it might be possible to do a structural MRI of this area of the brain now. Of course, most studies nowadays seem to be doing functional MRI rather than structural.

I wrote to Margaret Bauman, another autism researcher, and asked her if there was evidence of abnormalities in norepinephrine in autistic brains. She stated that her research had not found any but it was possibly due to the measurement techniques they used.

Dr. Bauman is one of the few persons to have done post mortem autopsies of the brains of persons with autism. It would be good if post mortem autopsies could be done but the problem is autistics usually live out their natural lives and it has been only recently that persons have been diagnosed as autistic. This does not mean that autistics over the age of 75 do not exist as the mercury militia and others insist, but only that they were never diagnosed. If such persons near the end of their life could be found and will their brains to science, then perhaps we could find some real answers to autism and possibly even a cure someday. Of course I realize this is not realistic anytime in the foreseeable future.