Monday, October 26, 2009

Everyone wants a cure for autism?

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

I found the following quote from the article particularly interesting:

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

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

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

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

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

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

Sunday, October 25, 2009

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

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

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

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

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

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

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

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

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

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

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

Wednesday, October 14, 2009

AS board member gives take about autistics on the board

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, October 13, 2009

yet another dies at autism's hand

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

Friday, October 9, 2009

Autism genetics: Is Temple Grandin keeping a secret?

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

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

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

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

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

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

Tuesday, October 6, 2009

Why would neurodiversity endorse facilitated communication

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, October 5, 2009

Michael John Carley: Candidate for AS board of directors?

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, October 4, 2009

Yet another attempt by neurodiversity to bring back Bettelheim

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

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

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

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

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

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

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

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

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

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

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

Thursday, October 1, 2009

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

To Anyone It May Concern:

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

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

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

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

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

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

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

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

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

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

Much thanks,

Jon Mitchell