Monday, February 23, 2009

Does Neurodiversity help autistics with self-esteem?

I have just read another interesting piece about the neurodiversity movement. This piece was good in that it seemed to give a well balanced perspective, showing both the pros and the cons of neurodiversity. One of the more interesting things was the article cited a study that was recently published in the journal dyslexia showing that persons with autism and related disabilities who believed in the neurodiversity movement had greater self-esteem and academic aspirations than those autistics that did not believe in the ND philosophy. This is what the article states verbatim:

According to recent research, people with autism who accept the neurodiversity platform have more self-esteem, and have more academic and career ambition that those who see autism as a medical condition with its array of disadvantages. In one study, students with autism who held the latter view more often applied for special assistance and monetary allowance through disabled students programs.

The abstract of this study is here

As regular readers of my blog could possibly surmise, this statement hits home with me as I am one of those on the autistic spectrum who finds neurodiversity about as appealing as poison ivy or hemorrhoids. I also have very low self-esteem.

I have not read the actual article in Dyslexia myself, but I did read the abstract which was provided as a reference at the end of the blog piece I linked to. Therefore, I suppose I cannot completely comment on the specifics of the study and the findings. I do feel this whole idea raises some interesting concepts and questions which I would like to elucidate on.

Is there a casual relationship between adopting a neurodiverse way of thinking and having an improved self-esteem, having greater chance of success academically, financially in romance etc. than an autistic with a negative point of view such as myself. The results of this research could be interpreted as such by someone who wants to put a positive spin in favor of the ND movement. This could be an argument in favor of neurodiversity.

But when one looks at the typical proponent of neurodiversity we see that the majority of them seem to be females. This is in spite of the literature stating there is a 4:1 ratio of males to females. This ratio is somewhat controversial among some who claim that autism is underestimated in females, but to date, as far as I know, no empirical evidence has ever given this hypothesis any credibility. The neurodiversity persons are also for the most part much higher functioning than many others with autism including myself. Some of them can graduate college, hold down jobs and get married. One must wonder if these are a representative sample of autism. So this is equivalent to the age-old question of which came first, the chicken or the egg. Does neurodiversity result in higher self-esteem and possible success or is it that really the people who believe in ND are generally much higher functioning and would have greater career aspirations and would not be as inclined to need help from a disability office. This is in addition to the ND autistics being a very unrepresentative sample of most of those with autism.

How would John Best's son or Harold Doherty's son stack up in this. Sam Best and Connor Doherty would probably not function at the level to have the same career aspirations as most ND autistics and would more likely require more financial assistance due to being lower functioning.

Michelle Dawson has told me at one time that she was not unlike myself, that she longed for a cure for autism. At the time her self-esteem was low and she was not in good psychological shape. But since adopting her current way of thinking, she has done much better psychologically. Apparently a change in her attitude now makes her more happy about having a neurologic condition that causes her to self-mutilate herself. Why a person would not want to be cured of this I have no idea, but Michelle is an adult in control of her faculties and is only hurting herself, so if she wishes to remain this way, I am certainly not going to stop her.

But one wonders if this attitude is helpful, or if deep down Michelle and other autistics really feel another way subconsciously. It was Sigmund Freud who postulated the concept of psychologic defense mechanisms I believe this provides the explanation for the higher self-esteem of those who believe in neurodiversity.

Denial is one such defense mechanisms that the ND use. Denial means that they filter out those ideas that are unpleasant to them, such as autism being a defect. They can't deal with it, so they just deny this reality. This is why ASAN engaged in their campaign against the ransom notes for example. They could not deal with autism being a deficiency , so they just denied that fact.

Another defense mechanism used widely by those in the ND movement is reaction formation turning something you truly hate into something you love. Therefore, the ND will say that autism equals genius and greatness and that Bill Gates, Albert Einstein, Charles Darwin and others had autism. This explains michelle's attitudes. It explains why Kristina Chew would claim that she is satisfied with the functioning level of her autistic child, yet drugs him with dangerous psychiatric medication due to his functioning being so impaired. It explains why Estee Klar-Wolfhond would turn something she hates into something she takes joy in, ergo "the joy of autism" as a blog title. Ms. Chew and Ms. Wolfhond are parents who tried ABA on their children, lured by the pie-in-the-sky promise of a coin flip probability of complete normalcy after a few years of treatment. When the pie-in-the-sky promise in reality turned out to be shit-from-the-sewer, these ladies embraced neurodiversity in disillusionment. They needed this philosophy to help their self-esteem to help them deal with their handicapped children.

Ergo, perhaps the results of this study are not all they seem.

Thursday, February 19, 2009

do autistics belong in padded rooms

Well there is more interesting news on the evil special educators redux department.
Did anyone ever tell you, you were so crazy you belonged in a padded cell? Maybe they did but they were probably being metaphorical and not entirely serious. The following is interesting in light of this. read details here

Tuesday, February 17, 2009

Voc Rehab: Let the disabled consumer beware

Earlier today I was reading a post about vocational rehabilitation services by Dora Raymaker who blogs for along with Kristina Chew. This reminded me of my own lousy experiences with the California State Department of Vocational Rehabilitation.

In 1985 I was unemployed, not skilled in anything except being able to type very rapidly. Due to my severe fine motor coordination problems that made handwriting and printing very difficult for me, I learned how to type at a fairly young age, so I had that skill. My terminations from jobs were starting to pile up, though I still did not yet qualify for the Guiness Book of Records as I do now. I felt that I was at the end of the line, I would have no choice but to get a job for a handicapped person. My mother called the Los Angeles chapter of the Autism Society of America to ask for their advice. In those days, autistics as high functioning as myself were still considered quite an anomaly, so they said that they really had no programs to help someone whose autism was as mild as mine. They suggested the California State Department of Rehabilitation. I had the requisite evaluations by a primary care physician and a psychiatrist to qualify for the services. I met with a voc rehab counselor who suggested I learn word processing and medical transcription due to my ability to type. In those days, word processing was still considered sort of a novelty and had not even quite made typewriters obsolete yet. Word star was the DOS based software of choice and sort of the hot ticket program. Word perfect may have been in its infancy (version 5.1 had still not been written) and not as popular as it became later. Microsoft had not yet written Word.

They sent me to a school that was part of the local school district of a middle sized town which is a city in the Los Angeles area. This was an adult program. They also provided the funding for a separate word processing class, so that I would be attending this office skills school for part of the day to learn office skills and medical transcription. When I was met by the person who ran the school, she stated that she felt I was not ready to learn word processing and informed my rehab counselor of this. My rehab counselor solely based on her recommendation immediately discontinued the funding for my word processing class that the state had set aside. They put me in another much cheaper word processing class that the school had to offer. The voc rehab counselor claimed that it was the same as the more expensive class but the teacher would give more attention to the students. Also, the class met in the late afternoon, so basically I would be going to this school, the entire day from 9 a.m. to 6 p.m. The word processing class was done on these cheap crummy Apple IIE computers (not on a DOS based computer) and the word processing packages that we were to learn were these very obscure programs that had been written only to run on an Apple IIE and were not word star or one of the other marketable stand alone word processing packages that were in use in the mid 1980s and which in those days were in huge demand by employers due to the short supply of persons who were familiar with the packages. Word star would be taught as part of the class later, but it turned out we were expected to learn this on our own and the teacher did not even know word star! This was so crazy that I asked my rehab counselor if I could drop the class and he acknowledged it was my option. I ended up paying about $400 for a private word star class out of my own pocket.

It gets even worse with the office skills medical transcription part of the course which I did not drop. After learning some rudimentary office skills, they gave me these medical transcription exercises with a limited workbook which was published in 1967 and was nearly 20 years obsolete. I found out later that medical transcription terminology changes all the time. I was expected to learn everything on my own. I did the exercises out of the book during the class with the teacher not giving me any assistance. She knew nothing about medical transcription yet was paid by this city's school district and got money from the State of California voc rehab department to teach this class. She deliberately avoided correcting my exercises. After I finally finished the exercises in the book, she told me that she knew of an opportunity where I could do an internship in a hospital, but I would have to wait to get a certificate. She stated that I was unable to get my certificate as I had not done the exercises correctly. I then complained to my rehab counselor and got her to start correcting some exercises.

But this class was so awful the teacher was so awful, I applied for jobs on my own and found someone who was willing to give me training in medical transcription based on what little I had learned in this course. I was paid on production and my earnings came out to about $1.50 an hour when I was first working for this person in 1986. I was fired from some medical transcription jobs doing hospital medical transcription the most difficult type of transcriptions, but then finally got some jobs doing clinic based and workers' comp reports which were easier to do but still required knowledge of medical terminology. I was able to work for various places for indefinite periods of time. I finally got a job doing most kinds of hospital reports as an independent contractor and made a semi-decent living for a brief period of time. When that job ended I had other problems and was forced to retire in my early 50s as I have written before.

When I was still doing medical transcription (albeit as not a great transcriptionist) I thought about what Temple Grandin said about Medical transcription being an unsuitable profession for a person on the spectrum. She based this assessment on just one other person (whom I was acquainted with also) who had failed in her endeavor to become an autistic medical transcriptionist due to sound sensitivity issues. I felt a certain satisfaction in having proved Grandin wrong. When I stopped doing medical transcription, however, I never dreamed I would end up meeting Temple in person at the 2008 ASA conference in Orlando, Florida and tell her what had happened to me and Temple again repeating what she said in her writings about the unsuitability of transcription as an occupation for a person on the spectrum. Well, I suppose life does have its little ironies.

I still think of this bad experience I had with vocational rehabilitation. I will never know whether or not this internship in the hospital was on the level or if the teacher was lying to me. I suspect the latter though. Though I was able to work in medical transcription sporadically in spite of the way voc rehab treated me, I was never good enough in it to steadily keep jobs or continue working in it, as the field changed.

Some persons whom I met have suggested that I give them another try. They say that it was over 20 years ago, that they may have changed and turned over a new leaf and may give decent classes, but I don't think so. I still remember the old saw once bitten twice shy. Most other persons whom I have spoken with who went to California's department of rehabilitation concurred with me and did not feel they were helpful and would only recommend it to their worst enemies. Perhaps some persons may have or may have had better experiences with them than I did, but I still don't recommend them and I am as skeptical about voc rehab programs being another quick fix that is promoted for autism. All I can say is let the disabled consumer beware.

Friday, February 6, 2009

an interesting lecture by Nancy Minshew

Today I attended a rather interesting lecture by autism researcher Nancy Minshew. Dr. Minshew is a professor of psychiatry and neurology at the University of Pittsburgh and is one of the people currently doing research into the neurophysiology of autism. She talked about autism being "synapseopathy". I guess that might mean lack of connections between synapses. Also she talked about autism being a disconnection syndrome, various areas of the brain being disconnected from each other. What, of course, was most interesting about this idea was that she stated that it had implications for someday making good interventions a reality for autistic people. She stated that one of the most interesting questions to her about autism was the heterogeneity between autistic persons. She used the book about social skills co-written by Temple Grandin and Sean Barron as an example of this phenomena. She read the blurbs on the flap of the book, one from Grandin and one from Barron. She contrasted the differences between these two persons with autism. Temple had no emotion in her blurb, just approached social situations logically, whereas Sean was the opposite.

She discussed the fact since autism seemed to result in a problem of migration of neurons to various places during fetal development that this suggested that the mercury/vaccines causes autism people were mistaken. She quoted a toxicologist who worked at the CDC who had an autistic son stating that he had studied this and the evidence of toxicological factors and this showed that autism was not caused by anything toxicological. She then gave Paul Offit's book a plug. She also plugged a book that has just come out by someone named Andrew Zimmerman, though I don't remember the name of the book or she never gave it.

One interesting anecdote that she discussed was how rules could override concepts in autistic individuals. She talked of a story about an autistic boy who was an eagle scout trained in first aide who liked to ice skate. One day he went ice skating with his mother and then skated a bit too fast and knocked his mother over who became unconscious. Though the boy was trained in first aide, someone else ended up administering it to her and not her son. After she was administered the first aide and taken to the hospital the boy's mother inquired as to why he had not given her first aide since he was an Eagle scout and had been trained and given a first aide badge. His reply was, "my first aide badge expired".

She talked about some studies of amygdala-cortical interactions.

One interesting thing that she talked about was functioning in Broca's and Wernicke's areas in autistics versus normal controls. Broca's area is the part of the brain in the frontal lobe that is involved in expressive speech. Persons who have lesions in this area as adults become aphasic and are not able to speak. Wernicke's area is in the temporal lobe of the brain and it involves receptive language or the ability to understand language and adults with lesions in this area have trouble understanding language. Minshew talked about a study in which the autistic group had less activation in Broca's than the normal control group whereas they had more activation in Wernicke's area. These results are consistent with poorer comprehension of complex sentences yet good reading and spelling ability among autistics. What I found most interesting about this study is perhaps this could be the reason that autistics do not always develop expressive speech. Perhaps there is some dysfunction in Broca's area that is analogous to adult aphasics. This would contradict what Eric Courchesne told me years ago when I was his research subject in some MRI scans and event related potential studies. He claimed that studying Broca's area would probably not be fruitful in autistics as developmental lesions were different than adult lesions. When I first asked him about why if autistics have damaged cerebellums they have no obvious motor impairments this was along the lines of his explanation that because the damage to the cerebellum was early enough there were not the same types of motor impairments that took place when an adult had damage to the cerebellum.

I don't remember much more about the lecture but overall a very interesting lecture.

Thursday, February 5, 2009

neurodiversity: We don't want to change but we want your Tax $$$

The neurodiversity movement has consistently voiced their opposition to a cure for autism. One of the arguments that adults with autism or the parents of autistic children who believe in neurodiversity can make is that it is none of my business or anyone else's if they don't want to accept a cure. Or even though (and I concede the point) it is improbable a cure will be found in our lifetime, that anyone should want to change them or wish a desire to change them. Or an organization like autism speaks would just be a front for coming up for a way to find a test in order to deliberately abort autistic fetuses. Autism speaks is not really interested in funding work not related to finding a way to abort autistic fetuses such as the work of people like Jaime Pineda or Lindsay Oberman to study neurofeedback or mu wave suppression, that is only a front to cover up their desire and "ultimate goal" (ABFH's words) to find a way to abort those fetuses. They can argue "It is our own body, it is our children's body it is our own life, our their lives what right do you have to tell us we need to change ourselves or our children?"

The problem with this logic is they are affecting other people. They are not only affecting autistic people, such as myself, who wish for a cure for autism or parents of autistic children who would like to change their children by curing them if possible, they are also affecting persons who are not autistic nor have autistic family members. How can that be? you ask. Well the answer is in tax dollars for autism services. No one can deny that autism imposes a heavy burden on the taxpayers, though this is something that the neurodiversity people do not like hearing, but it is an indisputable fact.

Most germane of all, these examples apply to some of the proponents of the ND movement. One of the most well known examples of this is Amanda Baggs who has constantly advocated for neurodiversity, saying she does not wish a cure for her condition. Yet Ms. Baggs feels it is just fine to ask the taxpayers to subsidize her SSI checks and the section 8 public housing she receives in a subsidized apartment in Burlington, Vermont. Also, one must remember Frank Klein, whose website has been taken down. Klein would promote the idea that Einstein was autistic and claim that autism equaled genius and greatness. Yet he himself was not enough of a genius to be capable of maintaining any substantial and gainful employment and was living (and probably still is) on the dole.

Another example, besides SSI and section 8 housing is adult medicaid waivers for autistic persons. Ari Neeman, president of autism self-advocacy Network, has become a very public figure in the autism self-advocacy movement in this past year. He has preached that autistics should not be cured, yet this involvement of his organization and obtaining these medicaid waivers for autistic people is one accomplishment he seems proud of. Never mind the cost to the taxpayers. When asked what should be done about autistic people who can't speak, self-mutilate themselves, smear feces on walls, etc, Neeman responded with the copout, being anti-cure does not mean being anti-progress.

One of the most costly programs for autistic children is the IDEA which guarantees "a free and appropriate education" at taxpayer expense. We see that one parent of a moderate to severely autistic child, Kristina Chew has given this program a shout out. When the law was first enacted the federal government made a provision that they would pay a maximum of 40% of the costs to the local school districts. They have never paid nearly this amount. Ms. Chew states that she advocates the full 40% funding in the article to which I have linked. This would involve billions of dollars of taxpayer money.

Yet, Ms. Chew appeared on national television stating that she had no desire to change her autistic child. I remember reading that she drugs her son with dangerous anti-psychotic medications but still does not want to change him and feels that the taxpayers should pick up the tab at the cost of billions to society for the IDEA.

The neurodiversity movement might argue in response to this, that because of societal attitudes and prejudice these taxpayers subsidies are necessary. That they would not be necessary if society would change and autistics could function at a level that would not require them to need excess tax supports. However, what is society to do about the nontalking, self-injurious behavior, meltdowns, lack of social relationships, motor coordination problems, and impaired ability to concentrate and to engage in goal related activity due to problems in executive functioning. These have nothing to do with society. The only thing they can come up with is Nee'man's copout. This was their response to millions of television viewers.

So, I say, this is not moral this is not right. I do not believe that Baggs, Klein, Ne'eman and Chew have a right to these attitudes and to pontificate them while advocating, and in the case of the medicare waivers, bringing about, taxpayer provided services for people for being on the spectrum. They are certainly hurting others with this attitude. Persons who subsidize these programs certainly have a right to say they want cures for autism to be found. I believe if these people really practice what they preach, they should stop asking for government handouts.