Wednesday, July 28, 2010

lack of social relationships may shorten autistic's life expectancy

There is an interesting new study put out recently by Brigham Young University that seems to demonstrate that social relationships or lack of social relationships can determine life expectancy and physical health just as much as smoking, alcohol consumption, obesity, etc. This study claimed to show that lack of social relations was equivalent to smoking 15 cigarettes a day, being an alcoholic, not exercising and twice as harmful as obesity.

I wonder how this bodes for persons with autism spectrum disorders such as myself whose opportunities for social interaction are quite limited. I wonder how this will affect my life expectancy and others who have autism.

As I have repeatedly tried to point out on autism's gadfly, the neurodiversity dictum "autism is not like cancer, does not need to be cured because it does not kill" has often been disproven by lower functioning autistics who are hit by cars, die in accidental drownings, get lost in snowstorms, etc.

This study that I have linked to may provide further ammo against the ND arguments. I would be interested in studying the question of whether an autistic person's lack of social relations would cause a shortening of their life expectancy or possibly increase the risk of other concomitant health problems such as stroke, heart attacks, etc.

Of course the first persons diagnosed with autism were not born until close to the mid 1930s so, this might be problematic in studying the question if anyone were ever interested in studying it. I know that some persons who believe in an autism epidemic believe the prevalence of autism among adults is much lower than that of persons born in the mid 1980s and later. Assessing the prevalence of autism in adults is problematic for a variety of reasons and it is beyond the scope of this post to discuss them. This might make the question of the effects that autistic's social impairments affect their health and longevity difficult to study. I would be curious how lack of friends, marriage etc. would impact the health and life expectancy of those with autism and similar problems. Of course such a study might not ever be done.

Joseph of the autism natural variation blog has made the very strong statement that autistics are half as likely to marry as their nonhandicapped peers. He bases this contention on one study that alleged that there was a 1% prevalence of autism among adults in the UK. This study had a myriad of methodological problems such as nonstandard use of assessments and in actually guestimates of how many persons with autism were out there. The prevalence of marriage of autistic people that Joseph cites was based on only 19 people. So if the population of the UK were around 10 million adults or more (probably more) Joseph is claiming that statistical inferences can be made from a sample consisting of not much more than .01% of its parent population. No I don't think so. So, no I don't believe that autistics are half as likely to marry as their neurotypical peers.

Of course the ND solution is acceptance. If only society would accept autistic people no matter how they behave, then they would have friends and lovers. Of course this is certainly not realistic and it is never going to happen

Ari Ne'eman has now been appointed to the IACC by the Obama administration in spite of the fact he has stated that he is opposed to all genetic research on autism and wishes to impose a moratorium on all genetic research.

However, I believe the BYU study may be yet another reason to try to use science, including genetic research, that might at some point in time to find treatments that will help autistic people and even possibly cure them. The lack of social opportunities for those of us on the spectrum may be killing us slowly.

Thursday, July 22, 2010

Where ASAN and neurodiversity leads

I see that ASAN member and neurodiversity activist Sarah Pripas, author of the Cat's in a dog's world blog, is at it again, accusing those of us with an interest in autism who are either parents of autistic children or those of us on the spectrum ourselves who wish a cure or help for this condition of being responsible for murder. It is very sad when an autistic child is killed by their parents. No rational person would justify this. Certainly this woman in Texas was insane as are all others who murder their autistic children. To claim that the desire for a cure leads to this is nothing but hateful fear mongering. However, it seems to be the contention of the ND movement and the autistic self advocacy network that the desire to cure autism is what leads these people to murder their kids. Ari Ne'eman has stated that in a testimony before the IACC that there were some people who believe that autism speaks is morally complicit with murder. Even if he did not come right out and say it, he was giving this idea credibility which should have no more credibility than the flat earth society. The admittedly stupid remarks that Allison Tepper Singer made in a video sponsored by autism speaks about sometimes feeling like driving her car off a bridge with her daughter in it was somehow responsible for the murder of Katie McCarron and other autistic children, according to ND and ASAN. How absurd is this. How many people who desire a cure really consider murdering their autistic children? This sort of propaganda only leads to hate and fear. I take great offense to being blamed for the murder of autistic children just because I wish a better life for myself.

It is interesting that the media on a not infrequent basis reports on autistic children who are killed in drownings, being hit by cars, trains, being lost in a snowstorm and freezing to death. Somehow neurodiversity and ASAN members never bat an eye when this happens (though the one exception was when Ari Ne'eman expressed his condolences over Ashley Brock's death by drowning on Ginger Taylor's Adventures in autism blog).

Give it a rest Sarah and the rest of ASAN and ND! No one is going to take you seriously. You conned the Obama administration into getting Ari Ne'eman appointed to the NDC and IACC. You are only hurting your own cause with such hateful propaganda. Your post only leads to hatred and bitterness and divisiveness.

This is one of the many reasons (perhaps the most important one) that neurodiversity and ASAN need to be opposed.

I apologize to gadfly readers if this post, written on the fly, is rambling and incoherent and not as well written as it should be, but this sort of crap from ND and ASAN ticks me off to no end!

Monday, July 19, 2010

Laurent Mottron in charge of autism speaks?

As has been written previously on autism's gadfly, this humble blogger has been interested in an answer to the question of why autism speaks would give Dr. Laurent Mottron a 3 year research grant amounting to nearly half a million dollars when he says that the ultimate goal of the organization that has given him this grant is nonsensical. and says that autism is not a brain disorder or a damaged brain but merely a difference. The grant was awarded in June 2008 and will expire in less than a year from now. Who wants to take bets that Monsieur Mottron will be asking for at least another half a million in June of 2011?

One would think that being able to receive such a sizable grant from an organization whose stated goals and beliefs in autism are so different from the good doctor's own would be enough for him. However, this does not appear to be the case. If what Alan Griswold wrote on his blog and prints a letter he allegedly received from Mottron is truly from Mottron as he claims, then it would seem this paragon of virtue from the point of view of the neurodiversity movement wants much more than to renew his triannual 500K grant.

Mottron allegedly writes:

I see three alternative ways to change a damaging system/ideology: fight it directly, build something else which is more convincing, or lastly, become the head of this system, then change it. I would call the last one the gorbachevian position. Whereas I used the first two ways at various levels (specially in our clinical organization, and in various influences we have as policy makers in Quebec), I chose the third way for science.

It would seem that Laurent Mottron would like to do something equivalent of a military coup of a third world nation and become its dictator. In fact, he may not mean autism speaks but the whole scientific establishment and its funding worldwide.

I am curious as to what parents think, whose children risk death from elopement, can't speak, and bang their heads and self-injure themselves who went on walks and fundraisers for autism speaks would think if this man whose research subjects as a general rule have nothing in common with their children were to be in charge of the whole organization of autism speaks.

How realistic is Dr. Mottron's ambition? What chance does he have of being able to take over autism speaks and/or influence scientific policy so every single scientist has a neurodiversity perspective? Given the fact our government has passed the combating autism act, stating that cure and prevention of autism are the law of the land and the Canadian government likely has a similar policy and most persons with an interest in autism regard the ND movement as nothing more than a fringe group with no more credibility than the flat earth society, it would seem Dr. Mottron does not have much chance of accomplishing this goal.

Perhaps there is a reason for this. I am reminded of the word
"megalomania". Though this is not a medical diagnosis of any sort, there are persons for whom this layterm is attributed to who have grandoise delusions. Is there evidence that Dr. Mottron could possibly have a state of mind that would lead him to believe that he had a chance of taking over autism speaks or in fact be in charge of all scientific research everywhere in the world? We have only to look at a wired magazine article that was written about Dr. Mottron, Michelle Dawson, a woman with autism who works in his research group, and Amanda Baggs. The article states:

One of the leading researchers here is Laurent Mottron, 55, a psychiatrist specializing in autism. Mottron, who grew up in postwar France, had a tough childhood. His family had a history of schizophrenia and Tourette syndrome, and he probably has what today would be diagnosed as attention deficit and hyperactivity disorder.

So we see there is a history of mental illness in Mottron's family which could possibly lead to a genetic predisposition to grandoise delusions. He also states that he possibly himself has attention deficit disorder.

For those who are claiming that I am making a libelous statement about Dr. Mottron or even that I am engaging in an ad hominem attack against the doctor, I will clarify. This is not to say that Dr. Mottron necessarily has a mental condition that has caused him to believe that autism is not a defect of the brain but merely a difference and even that autism is a harmless condition. However, as a person who has an autism spectrum disorder, who can't work, has very limited social relations, let alone being able to marry, can't concentrate, can't get things done during the day and longs for an answer using science as to what caused this condition as well as the best available treatments, including a cure, I believe I have a right to answer some pertinent questions. Would a rational thinking person go to medical school and then graduate school obtain a ph.d., specialize in a certain disease and then say this condition is only a difference? I don't believe this is the case. Would someone capable of rational thought believe that they could become the head of an entire organization and then just change the organization's way of thinking? I believe I have the right to question the soundness of mind of a person who is receiving money in a process in which I am a stakeholder.

Dr. Mottron's factotum, Michelle Dawson, has given me a simple explanation for why the group should accept funding from autism speaks and autism speaks should award them lucrative grants. "Science isn't politics". I must disagree with Ms. Dawson. Research scientists whether they work in autism, cancer research or other endeavors involving medical conditions do so because persons want to cure diseases. They are not funded so they can pay their mortgages and amuse themselves. The federal government is already involved with autism issues with just the creation and the passage of the CAA and the creation of the IACC alone. This in itself makes science a political issue. Therefore, as a stakeholder I have a right to question a researcher's political statements.

In the same vein, I believe that I have a right to question a doctor's fitness to practice medicine and/or receive funding for scientific research based on a possible mental condition and/or state of mind which might influence the direction of their research when I am a stakeholder. It is in this spirit that this blog post is written, not to diagnosis him with any sort of mental disorder or soundness of mind which would cause him to have such irrational beliefs and statements, particularly from a medical doctor whose job is usually to alleviate suffering and provide remedies for conditions such as autism.

In the meantime, as a psychiatrist, perhaps Dr. Mottron could look at himself objectively and think about the old saw, 'physician heal thyself'.

Wednesday, July 14, 2010

neurodiversity's interesting take on Christian Weston Chandler

I was interested to to read a post on the It's Tabi's time blog by a youthful neurodiversity blogger about an individual who has autism who is about 28 years old and is a virgin and apparently complains about his celibacy, stalks women, dresses in a vulgar fashion and apparently spouts bigoted comments about various ethnic groups and homosexuals.

Until last night, I had never heard of this individual, Christian Weston Chandler. I am very grateful to my friend Chelsea, author of the It's Tabi's time blog, for bringing this individual to my attention for two reasons.

The first reason is that the celibacy that not uncommonly occurs amongst autistic males and the frustration it causes them is rarely written about on the internet or elsewhere. Readers of autism's gadfly know that I am one of the exceptions to this rule. Another exception to this rule is my friend David Miedzianik ,who long before Tom Mckean or individuals such as Stephen Shore and John Robison published their memoirs, who are barely affected by their autism if at all, was the sole male in the world to have written a memoir of any kind about his life's experiences with autism. In fact, at one time, he and Temple Grandin were the only persons so far as I know to have written about their life's experiences with autism and to have it published in any form. I have written about David elsewhere. I am also gratified to see that the torch has been passed to one of the younger generation of autistics, my friend 18-year-old Oliver Canby, author of the autism is bad blog. Unfortunately, Oliver, David and myself would seem to be the exceptions to the rule of helping to publicize this problem that I suspect neurodiversity proponents and others don't wish to discuss. Though it would seem that Christian is a profoundly troubled individual with a very serious disability, I suspect that part of his problem stems from an inability to get laid. His rejection by the opposite sex has apparently caused him to lash out at some others and possibly make inappropriate and untoward advances to some women.

The second reason is that Chelsea's post and take on the matter shows a lot of what is wrong with neurodiversity given the ND point of view in general and Chelsea's point of view in particular. One of the tenets of neurodiversity is that autism is not a disorder that needs to be cured but a different way of being that needs acceptance and accommodation by society. Chelsea has been an active supporter of Ari Ne'eman and has applauded his appointment to the NDC and IACC. Ne'eman has written that social pleasantry should be eliminated as a criteria for hiring people for jobs and as something that should be used to evaluate someone's job performance. He makes this statement in spite of never actually having had a real job of any kind in his life. Chelsea, an 18-year-old with no life or work experience either, has expressed agreement with this. One would think that Chelsea would believe that if social unpleasantry should be tolerated in the workplace., that Mr. Chandler should be given a job, be able to sexually accost woman in his workplace, make bigoted statements and dress inappropriately on the job and still be able to keep his job and not have this be a criteria for evaluating his job performance that her attitudes would extend to Chandler's behavior outside of the workplace.

Strangely enough, this does not seem to be the case she writes on her blog:

This man is an embarrassment to the autistic community. He whines about his virginity at age 27. He dresses inappropriately in public (I mean in a potentially offensive way, not just unfashionable). Apparently he is a racist, sexist, and homophobe with no respect for human diversity. He is so desperate to have a girlfriend, that he will hunt down any BF-free girl he comes across on the internet or in real life. I am unsure of how this all came about. Most ignorant people would assume that it was his autism that caused it all, so the logical answer is to get rid of it (cure it).

If autistics need acceptance and accommodation by society, why would Christian be an embarrassment? One would think Chelsea and her friends would have empathy for this individual and say that it is society's problem. If social unpleasantry should be tolerated in the workplace, then why not in friendships, internet communications and choosing a mate? I would think that Chelsea and the other female ND activists should be glad to hop in the sack with this guy and give him some happiness. I must be one of those ignorant people that is referred to in the blog post because I would suspect it is his autism, or whatever you want to call the defect in his brain that causes him to behave in this manner, of course exacerbated by the frustration his celibacy causes. Though there is currently no cure for Chandler's condition, I would assume that if there was one that this would be the ultimate solution and he would be happy to have one so that he could be a productive member of society and work and have a romantic relationship with a woman.

The blog post ends on this note:

So the point of this post is, I would like to know a practical solution to deal with people who display these unacceptable behaviors and have no desire to change them.

In addition to being impressed by Chelsea's omniscience in knowing that Christian has no desire to change, I will concede that I don't have the solution for helping Mr. Chandler either. I wish I did. However, the ultimate goal (which does not exist) would be to cure Mr. Chandler of his autism, so he does not have these problems and does not have to go through life suffering as he does.

Apparently, most ND's not only not want to help him if there were a cure available and demonize organizations such as autism speaks who want to find a cure for an individual like this, a good number of them apparently want to mock and ridicule this poor man rather than having empathy for him. To Chelsea's credit, she is not one of these people. Of course this is not the case with everyone. Some character who calls himself "Nitz the bloody" writes in the post's comments section:

Okay, I'll admit to being a huge fan of the trolling of CWC,

I looked at this person's profile and briefly looked at his blog and found out he was one of the attendees of autreat, that annual unsavory conclave of neurodiversity hatemongers. So we see instead of saying that Mr. Chandler needs acceptance we see that at least some people think it is okay to harass and mock and ridicule this individual.

Neurodiverse logic will most likely never stop baffling me.

Saturday, July 10, 2010

could Yuri Danilov help me and other ASD sufferers?

Some readers of autism's gadfly will remember some time ago I wrote
a post about the locus coeruleus and autism. One of the readers and commenters of the post was a gentleman named Yuri Danilov, who gave me his phone number and signed his name and asked me to call him. I wrote down the phone number and deleted the comment. I was apprehensive. When I searched for this name in Google, I discovered that this person was a brain researcher and biophysicist in this neurologic rehabilitation department at the University of Wisconsin. I was flattered this pristine individual and scientist would take the time to read my humble blog and called him up.

He told me that he believed he had found a very new and revolutionary treatment in autism that would greatly help ameliorate the symptoms of autism and he was looking for suitable research subjects. He had a thick Russian accent and I had a bit of trouble understanding everything he said. I asked him if this was a cure for autism (something as most readers of my blog know I long for). He replied that it was not a cure but a very revolutionary treatment but that nobody believed him. He asked me how old I was. I was 53 at the time. He claimed that was not necessarily too old to participate in this study, but I had the feeling he may have felt I was a bit older than the research subject he was looking for.

Since I had never heard of him I was wondering if it was a coincidence that he happened to hold a faculty position at the same university as rogue neurodiversity researcher Morton Gernsbacher. I asked him if he was working with Gernsbacher. He replied that he did not work with Gernsbacher but he knew someone who had worked with her.

I told him that I was hesitant to travel to Wisconsin unless I was compensated for it, at least had my travel and accommodations paid for. He told me that he had people come all the way from Australia to participate in his research studies.

Since he had read my article on the locus coeruleus I wondered if his research was somehow related to this area of the brain which is the central location of the various tracts of axons that travel to various locations in the brain carrying the neurotransmitter norepinephrine. He just said that his research involved the brain stem. When I tried to pursue the matter further, he was rather tight lipped and just said that I could check out the lab's website and then email him if I had any further questions.

As I read about him and his colleague, the late Dr. Paul Bach-y-Rita, I became fascinated and intrigued. They had developed a technique where blind people whose retinas had been damaged could put this device on their tongue which had electrode arrays and the senses through the tongue could enter the visual cortex and the blind person could end up seeing. Bach-y-Rita had stated you don't see with your eyes you see with the brain. Eyes are merely a vehicle that sense changes in light energy but it is the occipital cortex of the brain that perceives these energy changes and thus sees. The skin and the retina have in common they are both sensory receptors and that may be enough. Danilov was a biophysicist and neuroscientist who worked with Bach-y-Rita who passed away about four years ago. The tongue is considered an ideal entry point into the brain for sensory substitution because unlike skin on other areas of the body it generally has no insensitive layer of dead skin on it.

The research that Danilov is also involved in addition to sensory substitution is neuromodulation, which involves stimulating the brain in various ways such as attention to a task, implanting electrodes in various areas of the brain to abort epileptic seizures, and the new cutting edge treatment transcranial magnetic stimulation which John Robison has been participating in. They are also using a revolutionary new technique called cranial nerve noninvasive neuromodulation, to help with neuroplasticity.

I never heard back from Danilov and I seem to remember I sent him an email about something (don't remember exactly what) which he never answered. I won't rule out writing him again at some point.

My recent track record as a research subject has been less than stellar. About 12 years ago Greg Allen was doing a study in the Courchesne lab involving fMRI. My head was too large to fit into the MRI scanner along with the computer equipment so I could not participate. I tried to have an MRI scan at Cal Tech in a study that Dan Kennedy was doing and for some reason the coil would not fit around my head or on my face. I wrote about this in a previous gadfly post. This is in contrast to my earlier experiences as a research subject where I underwent a couple of MRI scans that Eric Courchesne and I guess some other people who worked with him were doing. So even if I were provided airline ticket and hotel in Madison Wisconsin for a brief time I might not be of any use to Dr. Danilov either.

One of the things I don't understand is how this stuff can be applied to autism where the etiology of the brain problems is still not very well understood. Of course I am not sure what Danilov and his people are doing and I guess I will have to wait to find out. I still wonder if there is any chance this treatment (albeit experimental) could help me and others on the spectrum. I find it interesting that Danilov stated that no one believed him. The people who treat autism with questionable non peer reviewed treatments such as chelation, hyperbaric oxygen, gluten free diets etc are believed and still have their adherents. Rimland's heir apparent, Steve Edelson, has been trying to bring back research into secretin in spite of study after study refuting its effectiveness.

I guess I will never know and I will just have to wait and see what Danilov's research produces. At some point he will undoubtedly publish in peer reviewed journals if this research shows promise in treating ASD's. The media will likely pick up on this as he and Dr. Bach-y-Rita before he passed away have already received some media attention.

It does not look like I am going to be a research subject for this lab let alone benefit from what may be a revolutionary autism treatment though.

Wednesday, July 7, 2010

British Medical Association takes stance on conversion therapy

I was reading Michelle Dawson's TMOB comment board just now and she cited this interesting piece about the British Medical Association taking a stance against 'conversion therapy' or the therapy that attempts to make gay persons have a straight sexual orientation. I wonder what their stance would be in moving people in the other direction, i.e. turning a straight person into a gay person. This might be a solution for some sexually dissatisfied autistic male heterosexuals. In fact several years ago I wrote a short story which dealt with this very subject in case anyone is interested in reading it. Ironically enough my story is entitled 'The Conversion'. Tamar Brott described this short story on the NPR show Studio 360 which featured your humble blogger.