Tuesday, September 29, 2009

Ari Ne'eman gives input on autistics in workplace

I recently came across an interesting piece about some autistics in the workplace. These always hit home with me because of the tremendous employment problems that I have had as well as the simplistic quick fixes that are given by so many, such as disclosure and Temple Grandin's things about mentors.

I see that neurodiversity's lead spokesperson, Ari Ne'eman has decided to give his $.02 worth when he was interviewed by the author of this article.

Ne'eman states:

Aside from communication barriers, other challenges can impede autistic workers, such as sensory sensitivity to fluorescent lights or inability to understand directions for a job, said Ari Ne’eman, a 21-year-old with autism who grew up in East Brunswick and founded The Autistic Self Advocacy Network.

even more intriguing statement from Ne'eman:

Social pleasantry should be eliminated as criteria for hiring and a good job evaluation, Ne’eman said.

For those who don't know, Ne'eman is a 21 (maybe 22) year old kid who has never had a job of any kind or made a dollar in his life from working-at least he acknowledged this the last time I had contact with him and discussed this issue, though I realize this may have changed. Even if Ne'eman's situation has changed (which I doubt), he still has essentially no actual work experience.

As a person on the spectrum (autism not Asperger's syndrome unlike Ne'eman) who has been fired from nearly 20 jobs, yet who did manage to work sporadically for more years than Ne'eman has been alive, I resent him trying to give input on the autistics in the workplace. Never having worked, he knows nothing of the problems that people with disabilities face in the workplace. He is totally ignorant of anything involving working for a paycheck and making a living.

Apparently from these statements we see that Ne'eman feels that it is okay for an employee to behave on the job in any manner in which they choose if they have autism. Interestingly enough this does not jive at all with his previous statements that insanity defenses should be done away with for people on the spectrum charged with crimes as this will cause them not to have equality with NTs.
Ne'eman wrote:

If Asperger’s is a justifiable excuse for criminal action, what right do we have to demand an equal place in a society of law-abiding human beings? When a college student caught engaging in arson suddenly claims Asperger’s so as to avoid being held accountable for his actions, what does it say about all other law abiding autistics?

Someone working in a customer service or waitressing job should just be able to tell the customer to "fuck off" if they are autistic or Asperger's and feel like doing this. If the employer were to fire them, they would be a bigot, violating this autistic person's civil rights.

Well, as one of my favorite human beings, Clay Adams, would say, wish in one hand, shit in the other and see which one fills up first. Ne'eman and the ND movement are dreaming if they think this is ever going to happen. That society will accommodate people with autism no matter how they behave and how offensive their behavior is.

Even more intriguing than Ne'eman's inconsistent statements saying ASD'ers should be culpable for crimes they have committed is that these statements about social unpleasantries being overlooked are totally inconsistent with previous statements he has made on this same subject in the past, which come from the previous link:

If Asperger’s means an inability to help breaking the law, all of us are incapable of avoiding lawbreaking. As someone who hopes to work in law eventually, I am not too keen on the message this sends to my future prospective employers. “Asperger’s autistics,” says this argument, “are a risk to your workplace environment. They could go off at any moment- it’s just who they are.”

Ne'eman, who has commented that because of Allison Tepper Singer's admittedly dumb remark, that this caused a bunch of parents of autistic children to go out and murder their children and that autism speaks is morally complicit with murder, certainly knows about making a faux pas. Perhaps he is worried that when he actually goes out into the world and tries to support himself that he might get into trouble due to some sort of social skill impairment his Asperger's causes him. Perhaps this is why he is so concerned about employer's judging employees by their social pleasantries.

Of course the ND philosopy on John Best (a possible spectrumite) is not consistent with this. John Best's caustic speech and blog posts towards the ND's he despises so much are not overlooked by Ari Ne'eman and the others. Virtually all of them have banned him from their blogs, constantly vilify him and never overlook his mean behavior. Perhaps the ND's should practice what they preach. If that were the case Best's lack of social pleasantry in his posts would be overlooked and all of the ND bloggers would welcome him with open arms rather than banning him.

But these sort of inconsistencies and crapolla are par for the course for ND. So let's all say it together gadfly readers, WE DON'T NEED NO STINKIN' NEURODIVERSITY!

I should be working on my novel instead of writing this blog post

I should be working on my novel instead of this blog post. However, the writing and the research that has been required to write this novel has been very hard for me. It is about an autistic poker player. I would prefer not to go into more detail other than that. I have now written approximately 59,000 words which I am estimating is a little more than half a first draft. It has been very hard to apply myself and carry out this task. There is a good chance I will never get much further than what I have now.

Since I was about 13 I dreamed of being a writer. I first attempted to write a novel at age 14. In spite of all my other impairments I was a pretty fast typist, especially for someone aged 14 in those days. I used a typewriter before personal computers and word processors were invented, which may seem like ancient history to some of my younger readers who might not even remember typewriters except as antiques. Because my brain dysfunction not only caused autism type symptoms but also caused perceptual motor and handwriting impairments, I learned how to type at a relatively young age, especially for the 1960s, so I was able to type parts of my first novel which dealt with two mentally retarded individuals, meeting and becoming friends and fighting a system that had wronged them. Writing a novel is quite an undertaking, especially for someone aged 14. It is an even greater undertaking for a 14-year-old who at the time had had practically no mainstream education at all, having been in special ed schools up until that time. I was never able to get very far into the novel and other attempts to write novels were failures. I did still dream of becoming a best selling novelist and using my disability as a selling point or gimmick to achieve that goal. This was again another pipe dream or castle made of sand (from the old Jimi Hendrix song).

At about age 38, I had a friend who was a very prolific short story writer and when I told him about my frustrations at never having been able to write a novel he suggested I try short stories first. He was right. Short stories were easier, did not require as much research and seemed to be a potential novelist’s baby steps. I ended up writing 16 short stories some of which I have on my website

At about age 45 I decided to make another attempt at writing a novel. I ended up finishing a first draft and then some rewriting, my first novel! The novel dealt with an autistic boy in an abusive special ed school and his parents dealing with the frustrating bureaucracies of the IDEA law and special education. I also met a free lance journalist who did stories for NPR stations. She felt this would be a good story for the show This American Life. Getting on this show would greatly increase my chances of getting the novel published and being able to utilize "the gimmick" that I had dreamed about. I was told my novel would probably need work after submitting it to some literary agents and getting rejected. This American Life decided not to include me on their radio show which was devastating. As I worked with various book doctors it became evident my potential bestseller would in fact have to be written over again from scratch!. My friend, Tamar Brott, was able to get another national radio show, studio 360, to do the story of my novel. The show was originally broadcast in late 2002, then about a year and a half ago Tamar's interview with me was recycled on a show which they did about autism You can listen to the show with the recycled interview here. I may be the only person in history who was told my novel was worthless and had to be written over who then a month later was broadcast reading it on an NPR show. I finally shelved the novel as a failed first novel.

I wrote some more short stories, some more non-fiction including my article questioning the autism of Bill Gates and others. Now I am working on the second novel. Not sure how well it will ever go or whether I am capable of writing a novel ready for submission for publication. However, I do question some of the ‘rules’ of the book doctor who pronounced my first novel DOA. Certainly the rule about not using adverbs does not seem applicable or it would mean that Ian Fleming and John Steinbeck were bad fiction writers.

Maybe someday I will devote more time to writing the novel than to blogging, but in the meantime I guess if I want to do a slightly easier endeavor I always have autism’s gadfly.

Monday, September 28, 2009

Sometimes I still think about medical transcription

Doing medical transcription was what I did before I stopped working because it was too difficult. Medical transcription is the job of transcribing doctor’s dictation into medical records. For example when you go to the hospital, there is a record that the hospital is legally required to keep called a discharge summary. This tells about what happened when you were in the hospital, all the tests you took, your condition, etc. Or when you have surgery, a record called an operative report is required. Also sometimes histories and physicals, where the doctor tells about the history of your illness and your results on physical examinations. There are also other types of medical transcriptions including clinic things and workers' comp reports which are easier than the hospital transcription.

In 1985 I was unemployed and having a hard time making a living. It was recommended that I undergo training with the state of California department of rehabilitation which is designed to help disabled people find work. They recommended that due to my typing ability I go into medical transcription. I was treated very badly by the department of rehabilitation I have written about this elsewhere and it does not need repeating here In spite of what these bastards/bitches did, I was able to find an entry level gig in medical transcription. It was as an independent contractor doing hospital transcription for a transcription service.

I was paid on production (standard way of paying transcriptionists) a low rate $.06/line, a line being 65 characters. I probably made about $1.50 an hour when I was first doing it.
In addition to male transcriptionists being a very small minority, the work was incredibly difficult. It involved having to know tens of thousands of arcane medical words and phrases and knowing how to spell them properly. Some of the doctors were from foreign countries and had accents that were horrifically hard to understand. Even some American doctors would slur their words, mumble and often be unintelligible. I knew I had an uphill battle if I were to be able to be a hospital transcriptionists, but all my life I have worked hard and given everything my damndest in spite of this horrific disability.

The pay was solely on production, though the work was not uniform. For example a person could make a substantially higher rate of pay from much longer reports than from shorter reports or if the doctor dictating the report was clear and easier to understand than other doctors. Some of the jobs were independent contract rather than being an employee, so you had to pay double the social security tax, there was no workers’ comp insurance and no paid vacations. Most ironic of all there were no benefits, so a person doing work indispensable to the medical profession sometimes had no employer provided medical insurance. There were other expenses that I had to incur later on, but more about that later.

The work at my first gig slowed down and then I tried to find some other things and I was fired from some places but managed to find a few places that would allow me to work for them. I was tired of making a poverty wage, so I tried to find something better, in spite of my lack of experience. I was fired again from various places. I had no idea how people were able to transcribe these unintelligible doctors and do this job correctly. Eventually I found a medical group which was clinic work and somewhat easier than the hospital stuff. There was an Indian doctor there who I had a hard time with and he insisted the other transcriptionist there do his work. I had some trouble with a few other doctors and got fired from there after about a year and a half. I had various other jobs and came very close to giving up the ghost.

After a succession of jobs I acquired an independent contract job doing hospital work, though fortunately no operative reports in which my experience was limited. I worked at home for the first time rather than in an office and I had to provide my own reference books. All of the necessary references books cost between $400-500. On top of this I had to put an additional telephone land line in my home and pay for it and I obtained the work through a device called a C phone. I had to rent this from the people I contracted for, for about $30 a month. The other option was to buy one new for $800. I had to do this work through the telephone lines and no toll free number was provided by the hospital. Fortunately it was still feasible to do this work as the hospital was a toll free number from where I lived. After being fired from this job, then reinstated, I learned I was required to buy my own C phone as supposedly the people I worked for could not legally rent one to me as I was an independent contractor.

Used, this was about $500. I had no idea where I could have obtained one more cheaply. I was able to do more lines at this job than at the others I had and my gross pay was probably $15-16 an hour or maybe more on good runs. Of course you had to deduct about 5% of that for the additional social security tax I was forced to pay as a legally self-employed person. Eventually this gig ended when Kaiser Permanente (I did the transcription for one of the chains of hospital this HMO giant has) acquired a new "health connect" system which cut our work by about 50% or more. I was not able to find another job and keep it.

As my regular readers know I have retired and for the past two years since I have retired I have been trying to qualify for SSDI which I am not likely to ever receive. C phones have become largely obsolete and transcription is now received through digitized .wav files. This meant that I was stuck with a $500 investment that I could not recoup anything on. I did try to sell my reference books on Craig’s list for a while but had no success.

I remember hearing about how Temple Grandin was claiming that medical transcription was among one of the bad jobs for an autistic person because of hearing sensitivity issues. I had to laugh at that, because albeit not perfect it was a good job for me, because I could do all the work without having to interact with others most of the time, especially when I worked at home. The joke was on me when I met Grandin last year at the 2008 ASA conference in Orlando, Florida and told her what my former profession was and how it had not completely worked out, and she reiterated her old saw about how I had entered a bad profession for an autistic person.
Of course, one can look at the perspective of the glass being half full. I did work a good portion of the time although it was difficult, but I did better at this than anything else and this did allow me to work for a period of time, although not until I would be old enough to receive retirement social security.

Though retirement has its nice aspects, I do miss working a bit. Working certainly helps people with self-esteem and self-worth. Lately I have been trying to pass the time by writing a novel. Actually I should be working on the novel instead of this blog post. However, I will post more about this in the future, maybe tomorrow, stay tuned.

Autism speaks kowtows to neurodiversity

I see from reading Alan Griswold's autistic aphorisms blog and the infamous "execute pro-cure autistics and turn them into cat food" autism bitch from hell's blog that Geraldine Dawson, chief science officer of autism speaks, has written a canned response to the various pro-neurodiversity anti-cure proponents who took umbrage to autism speaks' I am autism video:

Thank you very much for sending me your letter and telling me about your perspective and feelings regarding the “I Am Autism” video. I understand and respect your perspective and I am truly sorry that the film offended you. The video was not intended to reflect Autism Speaks broader viewpoint or attitude toward persons with autism spectrum disorder. Rather, it was created by two fathers of children with autism – Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso CuarĂ³n, an Academy award-nominated film director. It is based on a personal poem written by Mr. Mann. It is an intensely personal expression by these two fathers. It was their hope that the piece would inspire other voices and artists in the autism community. It has greatly offended some people, however, and we have removed it from our website.

Again, thank you for writing to me and sharing your thoughts. You can rest assured that I will continue to advocate for a respectful and compassionate attitude and support for persons with autism spectrum disorder.

While Geri Dawson's statement that AS removed the video from their website may not have been an outright and deliberate lie as they did kowtow to the ND fringe and removed it from their home page, the statement was not factually accurate as they still have the video on a more obscure place on the webpage. Both ABFH and Janet Norman-Bain have called Dr. Dawson on this fact.

Geri Dawson and autism speaks have nothing to apologize for in making this video. Drastic videos showing what a horrific disability autism is are certainly necessary to generate funding so that research can be done that will cure or at least find a way to mitigate this horrific disability at some point in time. Instead of trying to dissassociate AS in general from the videos and just attribute this to the two filmmakers only makes AS and Geri Dawson look obsequious and reduces their credibility as a fundraising organization which claims that they are looking for a cure. There is no need to mollify these people. Certainly persons such as ABFH who suggest executing me and turning me into catfood is a good idea are not even worth trying to have a respectful dialogue with. Her offense at this video should be taken with a pillar not a grain of salt.

Unfortunately this letter only kowtows to this fringe cult who don't want autistics and others with related disorders to have a shot of living a decent life and want the pain and suffering that autism causes to continue. While I realize it might be impolitic of her to tell Alan Griswold, ABFH and others to fuck off this is the attitude that they should take.

Another alternative would have been the type of response Jon Shestack gave me when I first met him in the pre autism speaks days when his CAN was neurodiversity's favorite whipping boy. I pointed out to him that there were some people with autism that did not like what he was doing. He replied: "Their problems are nowhere near as severe as my son's are and if they don't like what I am doing, too bad." I realize this response might be considered impolitic also, but certainly it is the attitude that autism speaks should take and yes, Geraldine Dawson should have just said, 'too bad' if you don't like our video.

Or perhaps the most diplomatic and politic response would be that autism is a serious problem for at least some, even if the mild ASD's that ND's or their relatives have in many cases that they can respect the rights of others to pursue fund raising the way the other side sees fit whose problems are far more serious than theirs are.

Anyone who can read between the lines can see what a disingenuous snow job Dawson's canned response was. In addition to the inaccuracy of her statement that the video had been removed from AS' website, certainly this video reflects the overall view of autism speaks as well as likely most of the relatives of autistic persons who go on walks for AS or donate money to them. There is no reason for AS to soften the tone of their message of what a horrific disability this is ,nor to worry about offending persons in the fringe cult of ND. A respectful and compassionate attitude towards those with autism is not taking an ND perspective but acknowledging the harsh realities of autism, the fact that it is a disease, a disorder and not merely a difference and funding scientific research that might enable them to live better lives and maybe even ultimately find a cure.

Addendum: Clay Adams was kind enough to point out to me that I originally misspelled kowtow as cowtow, an error true, but I suspect a common one. Though I appreciate Clay bringing the error to my attention, I usually won't publish his comments on autism's gadfly.

Friday, September 25, 2009

A disingenuous response from Laurent Mottron

I see from reading Alan Griswold's blog, Autistic aphorisms, that the good Dr. Mottron has given a response as to why he would accept funding from autism speaks when he is totally opposed to their goal of curation of autism. I would like to write my open letter to Dr. Mottron, now that Alan has written his.

Dear Dr. Mottron:

You state that there are three alternatives for what you can do with a system you do not like: 1. You can fight it. 2. You can try to come up with something better. 3. You can try to take over the system you do not believe in as per the old saw 'if you can't beat 'em, join 'em.' Unfortunately, you have succeeded to a degree in number three. Why, I still don't understand.

Basically You admit that the only way that you can do the research you want that allows you to publish and get your name in the media (which your research group unfailing always tries to do to spin their research and what they claim the implications are in order to obtain more funding) is by working within the system that you yourself do not like.

You know that number one is futile. There is no way you can fight a system you do not like. Most people whose lives are directly affected by autism, whether they be parents or other relatives of autistic persons or those who happen to be on the spectrum themselves and don't like having these problems (myself and others included) are sane enough to realize, this is a bad thing. This disorder is not harmless as you claim. I don't know what your interest is in autism. As far as I know you have no personal dog in the fight, i.e. no child with autism and no autism disorder (Yes disorder not difference!) You can't possibly understand the pain I feel at lack of a social life, of nearly flunking out of college and not being able to become a brain researcher who will actually try to do something to end this misery (unlike yourself). You do not know what it is like to be fired from jobs constantly (something I told you about when we met in Los Angeles last year) to have an addiction to twiddling (self-stimulatory behavior) that is as insidious as any drug addiction in terms of dependence if not cost or harm to my body, to have fears and phobias and to not be able to write legibly. You do not know what it is like to be in a special ed school, to be told you are not good enough to go to a school with non handicapped children, to have to spend recess time being tutored in handwriting because your ability is so impaired and there was no other time they could tutor me, Not to be able to draw or put puzzles together. Not to be able to concentrate on things I read and to become the unwanted center of attention because of a loud voice and funny movements. You do not know what it is like to have a parent worry about what will happen to their child when they die, to have to struggle with the decision whether to institutionalize them, to have to worry about them injuring themselves, not knowing if they are sick because they cannot talk, etc. In spite of your erudition and high education obtaining both an M.D. and Ph.D. degrees these issues are an abstraction to you, Dr. Mottron if you happen to read this. So, no, most people with an interest in autism don't have your irrational ideas that this condition is harmless. They want a cure. You are outnumbered by a factor of hundreds if not thousands. So you know, that if you tried to fight it you are like Don Quixote trying to attack windmills.

Number two, it is impossible for you to come up with something better in spite of your deluded fantasies because you can't. Your research with just a limited and nonrepresentive samples of autistic children, showing how well they do on a certain test or how well they process information based on blood oxygen level dependence in an fMRI scan will not enable them to have better lives, to learn better, to get along with peers better, have a higher probability of holding down a job and not being fired or especially to obtain a high paying and prestigious job such as you have monsieur. I am glad you mentioned Isabelle Souleries' study because I have read it and even if you can fool the incompetents at autism speaks into giving you funding, based on your and Dr. Souleries' absolutely unfounded and unscientific interpretations of the study, you are not fooling me. Souleries interpretations of the study were based on the premise that children with autism who score 85 or higher on Wechsler IQ tests have superior raven's matrices performances. As you know, this finding has never been replicated by an independent researcher. Claiming that Hayashi's study showing Asperger's persons have superior scores on Raven's when matched for Wechsler scores with neurotypicals is irrelevant, because this is not what Dawson (2007) was about it was about autistics (not asperger's) who scored much worse than NT controls on the Wechsler scoring high on RPM. Also, Sven Boelte has failed to replicate you and Dawson's findings in this study at least in persons with IQ of 85 or higher. Kimberly Boddner in Nancy Minshew's group has also failed to replicate your findings in the higher Wechsler IQ autistics. Though her findings have so far only been presented as an IMFAR poster and have not yet been published in a peer reviewed journal, I think there is a good chance they will be sometime around 2010. So, your claims about Souleries' study which was partially funded by AS being able to be applied to improve the lives of autistics, has no evidence, no proof whatsoever.

Also I question the interpretations of Dr. Souleries' that the more rapid response of this group on the RPM's and the increased BOLD levels in the occipital lobes would ever translate into autistics being able to learn faster or more appropriate educational methods being developed for them. This is total speculation on your part as well as Souleries' and you know it. It is possible that the increased BOLD levels were due to a compensatory effect of other areas of the brain being impaired. You are certainly aware of research showing lack of BOLD levels in the pars opercularis and certain parts of the parietal lobes comprising the mirror neuron system. Perhaps the faster responses in the occipital lobes that Dr. Souleries found were only a compensatory mechanism and not something that would enable autistics to learn certain things faster or better if they were presented with the correct educational methodology as you and Dr. Souleries have reported to certain media outlets.

I realize you are not worried about my criticism making an impact on AS. I question your assertion that they are a neutral organization in their fund raising decisions. I seem to remember someone writing in the comments section of Harold Doherty's blog that there was bias in the funding decisions, that the people who serve on the decision boards of AS are the one's who fund themselves. Sort of like the fox guarding the henhouse. I remember Michelle Dawson saying she had collaborated with some of these people. I honestly don't know any more about it than this so I won't comment further. I wish I could find out more about how AS makes funding decisions. I am truly baffled as to why they would give you half a million dollars.

Assuming Mr. Griswold is telling the truth and you really wrote the words that appear on his blog, I appreciate your tacit admission that you are indeed a hypocrite. That you only accept the money because you have no other alternative and can't raise the capital yourself or find likeminded neurodiversity organizations to fund your research.

Now that I have heard your explanation, I hope to someday hear an explanation from AS as to why they would give someone so much money who states that this condition that has caused me so much pain and misery and pain and misery to others is harmless, to a medical doctor who would posthumously diagnose a historical figure like Tesla whom you never met who died well before you were born. I won't hold my breath though to AS ever giving me an explanation. I believe they don't owe me so much an explanation though as they do the many persons who went on their walks and donated money to them, thinking it would actually go to someone who would try to find a way to cure this condition (a formidable goal, yes, but not nonsensical). Not to mention some of them who have extremely low functioning autistic children who can't even speak and engage in self-injurious behavior who would never be deemed suitable research subjects by your group. These people, have probably never read Souleries' study and probably never will and will probably never even hear of you. They just donated money and time to AS as a matter of blind faith.

I realize my post won't change your mind, but some of us who are on the spectrum do suffer and would like to be cured and being able to go to medical school, get a ph.d. and get married and not have this disability a lot of our problems are an abstraction to you. Something to think about.

Thursday, September 24, 2009

good common sense from a member of neurodiversity

I was very pleased to see that a member of the neurodiversity movement, Alan Griswold, has shown some good common sense, a rarity for any of them. Alan writes the autistic aphorisms blog. Though I don't agree with a lot of what he says, I find the stuff he writes interesting and I have provided a link to his blog on autism's gadfly.

As those who read autism blogs are well aware, autism speaks has come out with a new and controversial video extolling the negatives of autism. Predictably, those who have a neurodiversity perspective are incensed about the video and are trying to get it removed as they did with the ransom note ad and the kidnapping sign that the York Pennsylvania chapter of the autism society posted along a highway.

Alan has written an open letter to Laurent Mottron urging him to decline receiving further funding from autism speaks. He has not written a similar open letter to Michelle Dawson, however, I left a comment on his blog urging him to do so. This would make good sense as it would seem that the need for funding of research has trumped the moral principles of both Dr. Mottron and his sidekick Michelle Dawson. When I asked Ms. Dawson about why she would not resign from the Mottron group in protest her explanation was "science isn't politics". I have been very curious as to why autism speaks would give Dr. Mottron half a million dollars when he has stated that curing autism is nonsensical and that autism isn't harmful and that autism is not a dysfunction but merely a difference. This certainly is not the point of view of autism speaks, judging by the current video they have made.

Though I disagree with Alan on many topics, I do agree with him that ceasing to accept funding from autism speaks would be the honorable thing for Dr. Mottron to do, as he clearly does not agree with the agenda of this organization. It would also be the honorable and ethical thing for Michelle Dawson to resign from the Mottron group since she has stated that she believes autism speaks wishes a very short future for those with autism. Given the fact that she makes such a big deal about ethics, it would increase her credibility even further if she were to discontinue working with Mottron, Jocelyn Faber, Isabelle Souleries and other AS funded researchers until they cease to get funding from AS. Also Michelle has recently been posting deragatory things about the new controversial video on her TMOB comment board. I won't link to these, but I have a link to her comment board on my blog and the interested reader can link and read what she is saying about the new video.

I am glad Alan has written that open letter and posted the problem with the Mottron group accepting funding from AS. If Dr. Mottron discontinued to accept or receive funding from AS then the money could go to sane scientists who have the common sense to realize that autism is harmful and how much a cure is needed.

I won't hold my breath waiting for either Mottron to quit accepting funding or Michelle to resign though.

Tuesday, September 22, 2009

Has autism's hidden horde been found in England?

Here is a studythat has recently been done in England finding a prevalence rate of 1% of adults with autism, suggesting that there has never been an increase in prevalence of autism as many have suggested. I did not read the whole study in detail but did surface read it, and it seemed that they surveyed a variety of people all over England. There was about a 9:1 ratio of males to females rather than the usual 4:1 ratio and this may have been because of the sampling size, I am not sure. I tried to read it in detail, but my disability made it hard for me to comprehend the entire thing and have all of it sink in. I was debating whether or not to blog about it, but I have decided to anyhow in spite of my concentration problems. This may not be the survey or study to end all survey/studies and I am sure this won't convince the age of autism folks as well as others who believe in an "epidemic" of autism involving huge increases (I don't think anything will ever convince them), but it may give some evidence that there has always been a high and stable rate of autism and disprove that vaccines or something else in the environment caused an autism explosion in the late 1980's, early 1990s.

The environmental hypothesis has appeal among its adherents, however, due to the fact that it provides the possibility of finding a single cause for most ASD's and with the cause, the treatment or possibly even cure can be found.

One of the arguments that those who have this point of view is that there are no comparable numbers of adults with autism. Even though this survey may not prove that conclusively, I think it is the first published survey of its kind that has been done trying to get an assessment of what the prevalence of autism is in older populations. To date, as far as I know, the other side has never done such as study.

Mark Blaxill has given the arguments that a study done by Bard et. al. in a rural part of North Dakota in which they tried to find additional persons with autism diagnoses after the prevalence of a certain sample was obtained in the cohort's childhood, they failed to find any new cases. The problem with this one study was that it was done in a rural area where the prevalence rates for autism are low. If numbers of autistic persons has actually increased it has been in urban areas. For example in the 2007 CDC survey much higher rates were found in New Jersey than in Alabama. In California's regional centers, the autism prevalence is much higher in Los Angeles than in rural parts of Northern California. Some might argue that this is due to more pollutants being found in urban parts of california or a higher rate of pollution in New Jersey than in Alabama. Be that as it may, so far no one has found any pollutant in the environment that has caused this increase. If vaccination rates are much higher in New Jersey than in Alabama and much higher in Los Angeles than in rural parts of Northern California, I have yet to see evidence of this.

Another piece of evidence that Blaxill gave was a study done by Nylander in Sweden where the author searched for persons with autism in psychiatric hospitals and found low prevalences there. Aside from the fact that autistic adults may not be inclined to present in psychiatric hospitals in great numbers, particularly if they are pretty high functioning, we see some inconsistencies in Blaxill's reasoning. In some personal correspondence that he and I engaged in about six years ago he stated that the evidence for a true epidemic of autism was that the increases were geographically specific, only taking place in the USA and UK and not other parts of the world. So, it would seem strange that he would cite a study in an area he had deemed geographically irrelevant.

So, I suggest that the age of autism folks or one of their allies does their own study, refuting the recent British survey showing that the prevalence rate of autism in persons born in 1986 and earlier is in fact lower than in the younger cohorts.

I was skeptical that finding the autistic adults was feasible, since they are not likely to present to special education services and regional centers and such.

I am glad that studies are finally being undertaken to find the so-called hidden horde of autistic adults. I have written about the reasons previously

I apologize to readers of autism's gadfly that I was not able to read and understand the study in more detail. Hopefully more work will be done in this area and we can determine whether or not the prevalence rate is the same in older populations than in younger.

Monday, September 21, 2009

autism speaks accepting nonfiction submissions

Autism speaks, the behemoth autism organization which appears to be a figurative jack of all trades and a master of none has yet engaged in some more dilettantism and has now added to their Felix the Cat bag of tricks and items something new. They now seem to be accepting non-fiction pieces for possible publication on their website. I just finished reading one rather moving piece about a young boy with autism who has an interesting obsession with garage doors. My interest was piqued by the fact that at the bottom of the piece it stated that autism speaks was accepting personal stories about autism. I have debated whether I should write a piece and submit it to them. They were vague about the submission format but I presume someone could submit a word rich text file as an attachment and they would have no problem opening it.

However, this is an organization that on occasion has offended my sensibilities due to their funding Laurent Mottron and possibly other neurodiversity concerns, their
autism in the workplace dog and pony show which does not include employing any autistics in their organization and other reasons. So should I become an apostate and submit an article to them. After all, the pickings seem to be slim in terms of where a non-fiction writer such as myself who wishes to break out of the blogosphere can submit an article. I did have my piece on autism genetics and suffering published on Exceptional Parents' magazine website. The autism spectrum quarterly rejected my submissions claiming they were more into self-help type things and my theoretical and academic questions about ASD's were not within the genre they would accept. Trying to compete with Tim Page and submitting a piece to the New Yorker would seem out of the question for this fledgling, nobody writer. I did submit my essay exploring the irony about the fact that the headquarters for the Lovaas Institute for Early Intervention is located in the same building on the same floor as the social security office in West Los Angeles to the Newsweek my turn column. I never heard back from them so I can presume my essay was one of the 199 out of 200 submissions that they get which did not make the cut. So I have to wonder if it would be ethical to submit a piece to AS due to my misgivings about them.

Laurent Mottron seems to have forsaken his principles in soliciting money and accepting approximately half a million dollars from an organization whose main goal he says is "nonsensical". His sidekick, Michelle Dawson, who on more than one occasion has expressed her contempt for autism speaks and the persons who donate money to them, also seems to have forsaken her principles in that she has not resigned from the Mottron group in protest. When asked about this her only dumbfounding reply was "science isn't politics". If these two august individuals can swallow their pride maybe I should also, but I am not sure I want to be attempted by submitting an article to AS.

One other issue that is germane is whether or not personal experiences with autism just include those of parents of autistics or persons with ASD's themselves. AS was not specific in addressing this issue. The first essay they have published was written by a parent of an autistic and not an autistic themselves. As many people have correctly pointed out autism speaks may not be interested in hearing what high functioning autistics themselves have to say. One of neurodiversity's banes of contention has been their neglect to appoint a person on the spectrum to the board of directors the way other autism organizations have. So I am not sure they would publish an essay written by an autistic themselves in addition to a parent's essay or a special educator's or other professionals

To any neurodiversity proponents who happen to read this: Here is your chance to get your views about autism out. You are always trying to convince curebies of your way of thinking. Michelle Dawson and Laurent Mottron and Isabelle Souleries have no qualms of accepting this tainted money. Perhaps you people should have no qualms either.

I have not made the decision 100% myself in this dilemma but probably the best course for me is to resist temptation. I may just have to be content to be a self-published writer on this humble blog.

Tuesday, September 8, 2009

My SSDI hearing at last!

Today, I finally had my SSDI hearing. I was told by my lawyer it will take about 3 months before I receive the ruling from the judge. As I have mentioned in previous posts, I have waited nearly 2 years to have this hearing, having filed the appeal in December of 2007. My hearing was originally scheduled on May 19, but my lawyer was not notified a vocational expert would be testifying on behalf of the government and did not have the correct files to cross-examine her with, so my hearing was postponed until today, September 8.

It was rather predictable with the judge asking me questions about the various positions I was fired from. Of course he did not want to hear about all the jobs I had been fired from previous to 1994, so I was only allowed to testify as to the 3 jobs that I was fired from since 1994 (excluding the job I was partially fired from and was forced to resign from because things were so bad there). Naturally he wanted to know why I was able to work at a couple of jobs for a fairly substantial long time since 1994 why I could not go out and try again. I told him the truth, that with my disability, I would always be limited in the job market and would risk being fired or having problems on the job and I was sick of struggling and believed I was entitled to SSDI. He asked me about my self-stimulatory behaviors. I explained them to him. He commented on the fact that I was not doing them at that moment. I told him that I had some control over it to a limited extent, but did not do it all the time. I think the judge was rather cynical and felt I appeared "normal" to him.

There was a vocational expert there who testified in favor of the government as well as a medical expert who was a licensed psychologist who testified over the telephone and was heard through a phone speaker.

The vocational expert basically stated that even though I could no longer do medical transcription that she believed I could do some more menial job such as janitorial work or doing packaging or being a washing machine loader in a dry cleaners. Of course these vocational experts don’t take into account that at any job like that which I would apply to I would have to explain why I left medical transcription and would have to think up some sort of excuse or tell them the truth about my disability which would automatically forfeit my chances of getting that job. It is also quite likely I would have impairments in these jobs as well. Even if I didn’t, once my self-stimulatory behaviors, loud voice and other problems came out in the wash, they would find some excuse for firing me.

My lawyer asked me questions about how I got along with supervisors in the workplace and if I was sensitive to criticism when the errors I made in my work were criticized. I spoke of the one incident where my assistant supervisor at one job while reprimanding me about a mistake told me that this is why I had such a bad reputation with certain doctors and I got angry and got into an argument with her.

The medical expert (who never met me or saw me in person) testified about my autism and how it would affect my sociability and dysthymia and depression that I was stated to have. Her opinion was entered into the record.

One interesting part of my lawyer’s arguments were my scores on the block design subtest on the Wechsler IQ test. This is a test where a diagram of some colored blocks is shown to a testing subject and they are asked to duplicate the diagram. Because of my perceptual motor impairments due to my brain damage, I do very poorly on this test. It was argued that this could be a contributing factor to my impairments in making a living. The psychologist countered that it would probably impair my ability in drafting or architectural type of professions, but not in typing or as a medical transcriptionist. This is an accurate statement on the part of the psychologist. Though I made an excessive amount of errors in various transcribing jobs that I had, it was due to lack of concentration and autistic "zone-outs" rather than my perceptual motor impairments.

I am atypical from apparently some other autistics in this regard. There are apparently some research studies that have shown that autistics do well in the block design test. Of course these are just some studies that were limited to using certain research subjects and cannot be applied to all autistics.

I am happy that it is finally over after waiting for so long. Of course because the hearing is over does not mean the case is over. Because I was able to work at some jobs at a barely acceptable level and my condition basically has stayed the same and has not deteriorated since 1994, I certainly don’t have an absolutely solid case for being able to get social security disability benefits. There are, however, certain precedents in the law where in certain cases there were favorable rulings for claimants in various court cases due to being fired chronically from jobs, so I do have a legal basis for claiming benefits and/or early retirement.

From what I have read, about two-thirds of the people who apply for SSDI are turned down as I was. I still remember two years ago when I first applied for it being struck by the irony that the headquarters for the Lovaas Institute for early intervention was located just down the hall on the same floor of the building that houses the social security office near where I live. I have written about this previously Trying to get social security benefits after having been turned down is an arduous undertaking often taking years.

It is quite possible that the reason I was turned down and am having difficulty is because I did work in the past. Basically it is not out of the question that I am being punished from having tried to spare the government the burden of supporting me (aside from the fact I have put thousands of dollars into social security already). I sometimes wonder if I had just applied for this in my 20s before I first attempted to work would I have been saving myself a lot of aggravation. In fact, I think parents of autistic children apply for benefits for their children. Hypothetically maybe this could have been done for me. The problem of course was that I grew up in the Bettelheim generation/era and there was not the same understanding. This was in addition to being very high functioning so my parents would not have known the poor prognosis for my outcome.
Do I regret that I tried my best to fight this thing for nearly 28 years? No, absolutely not. I am glad that I had the courage to try hard to work in spite of all of the adversity, the constant firings and the insults I took at times from supervisors and co-workers. Not to mention the tons of interviews where I had to come up with good explanations for my unstable work record, why I got a bachelors in psychology and never did anything with it, the problems of having to fill out job applications with a severe handwriting impairment, the crap I had to put up with from the california state dept of rehabilitation, etc. I was not a complete failure and I was somewhat self supporting from ages 24 to 51. But we all have our breaking point and I have reached mine. I really wish that I could work. I am truly one of the last people in the world who would apply for either SSI or SSDI unless there was a very good reason. But sometimes you just have to call it quits. Of course there is a good chance I will never receive a dime of this money at least until I am eligible for minimum retirement benefits at age 62. If you lose at this level, then there is a written appeal, then after that district court, if you lose there it can be appealed to the federal government circuit court of appeals. One or two of these cases a year are even heard in the supreme court. It is improbable my case will get as far as the supreme court. This means that my fight against the government will likely drag on for many years. So it goes.

Monday, September 7, 2009

What, again!?

Well, it's happened again. Actually it happens every September 7. As Sheriff John (for those who grew up in Southern California and are old enough to remember the children's television show on there locally back in the stone age) would say, I'm another year old today. Yes, it's my birthday (for anyone who gives a shit), I am 54 years old now. I am not a terribly young man, but I think I look young for my age. For anyone interested in what I look like there is a photo of myself on my jonathan's stories website. It is somewhat dated, I was 47 when it was taken, but I don't think I have aged too much since then, though I have gained some weight.

Somehow each year you become older you reflect back on your life and sort of feel at this advanced age all bets are off in terms of having a better life or being able to accomplish something in the world or making the world a better place or bettering yourself in some ways.

As a child, I went to special education schools from age 6 to age 14 with the exception of one half a semester of a regular education private school that I was expelled from at age 12. It hurt being told I was "not ready" to attend a regular school with non-disabled kids. For those who blog about autism on the internet, both parents and persons who are on the spectrum themselves, I am fairly certain that the vast majority never attended a special education school in their life. Unless they have and know what it is like to be told you can't cut it in regular education because of your behavior, rather than the lack of reading ability or academic skills, they can't possibly know what the life experience of the majority of autistic spectrumites is like.

My first memory goes back to age 4, about 49 years ago when I attended this summer school where my mom hoped to enroll me in kindergarten (as the local public school's kindergarten was out of the question) and being told I was "not ready" to attend this school for kindergarten. Mom found a kindergarten that would take me but the principal threw his back out doing some hard labor of some sort and could not look after me and it was felt my behaviors were too challenging for anyone else to take care of me, so I was expelled from kindergarten and still remember the hurt. At age 6 I started special ed school, when the new school year began.

In spite of being in special ed I always had hope. I never dreamed my life would end up like this, being fired from multiple jobs, having to give up the ghost and applying for disability. I thought I would get a good college education, be a lawyer, journalist, or some other type of professional and have a nice house with a picket fence and beautiful wife and maybe kids just like "normal" people. All of the old dreams that are such terrible cliches.

I finally left special education for good and enrolled in the local public school and was put back a grade (8th grade at age 14) and did okay (not great) academically. Upon reaching a later stage of adolescence I went to pot, both literally and figuratively, and I don't know whether or not marijuana abuse, or adolescence angst making autism worse or both affected me. However, my grades started to deteriorate and I barely graduated from regular public high school. I attended community college and then transferred to four year college which I managed to graduate from but not having done well enough to go to graduate school.

I then worked a variety of menial jobs, then learned the field of medical transcription, but was too mediocre at medical transcription to keep working in the field and retired from paid employment at age 51.

Contrary to what a number of my detractors in the ND movement or elsewhere seem to believe about me, I have always tried my best, tried to live the best life I possibly could.

It took me many years to realize the grim prognosis, how my condition was incurable and the unlikelihood of a cure being found in my lifetime. This was in spite of the fact that in college I wanted to go to graduate school and become a researcher who could find a cure for my brain-damage. I thought that dream would be fulfilled but alas it was another pipe dream.

I recently read the John Steinbeck novella "of Mice and Men". The title comes from the lines of a poem by Robert Burns, "the best laid plans of mice and men aft gang aglay". The two protagonists in the novel (one of whom apparently has a developmental disability which might be similar to autism) dream of being able to stop being petty laborers for others but owning their own farm, but this was not to be. I am also reminded of the Jimi Hendrix song Castles made of sand with the line Castles made of sand melt into the sea eventually. Another metaphor similar to the one of mice and men.

This would seem to apply to the parents of autistic children, who believe that ABA, special education, GFCF diets, DAN protocols, chelation, etc. will turn their children into normal children or enable them to function much better and be able to make a living and have a wife (or husband), etc. Supposedly the playwright Bertolt Brecht once said, the man who laughs has not been told the terrible news.

It also applies to those who embrace a scam like neurodiversity claiming that autistics are just fine the way they are and with the right supports they can do just as well as anyone else and engage in the no myths propaganda film starring Ari Ne'eman and attempt to extol their own brand of mythology for those who might be willing to embrace the opiate of neurodiversity.

Of course, I can't help having some hope; sometimes emotions are stronger than logic. Perhaps my life will begin at 54, I will be able to live another 30 years or maybe even longer and accomplish some things while I am still alive. Sometimes it is hard to be realistic so I know how parents of these children feel.

Tomorrow is my hearing for SSDI. I have waited nearly two years for this hearing, having originally filed the appeal in December of '07. I was supposed to have the hearing on May 19, but my lawyer was not notified that a vocational expert would be testifying for the government and he did not have the adequate files to crossexamine her, so it had to be postponed. Hopefully I will have my day in court tomorrow. There is a good chance I will write a blog post about it either way. It would be good if I could prevail and get some money (minus what I will have to give to my attorney), but my chances are not good. I am pissed this had to be postponed, that i have to go through this and the hearing has to be on the day after my birthday, but so it goes. If I lose at this level, there may be appeals including the written appeal, having the case heard in federal district court and after that possibly appealing to the 9th circuit court of appeals. Some of these cases are even heard at the level of the supreme court but that is rare.

Ari Ne'eman and his fellow ASAN members pat themselves on the back for having lobbied for Obama's stimulus package that will make these SSDI cases move along faster. Just means that if this stimulus works, someone will have to spend five years fighting the government for their disability instead of ten years or more. Yet ASAN and ND just want people with developmental disabilities to rot and not be cured if a cure for them could be found. Being asked for an explanation Ne'eman was only able to reply with the stupefying copout "being anti-cure does not mean being anti-progress" but I guess this is all old news for people who read my blog and other autism-related blogs.

Well, just wanted to tell the blogosphere that it's my birthday today if anyone cares. My parents care thankfully, but they are in their 80s and won't live forever. I have a sister, but she lives about a thousand miles away from me and we are not terribly close and I only talk to her a few times a year, so not sure who will care it is my birthday when my parents die, but in any event, happy birthday to me.