Tuesday, December 17, 2013

Interesting video from the Autistic Self Advocacy Network

In my most recent post of a few weeks ago, I suggested that the Autistic Self Advocacy Network try to engage in a positive message to solicit charitable donations to their organization rather than tearing down Autism Speaks. 

Apparently they may have taken my suggestion to heart using this video to promote their message. 

In it they use an animated version of a prototypical autistic person which as far as I can tell is a fictional amalgamation of a number of alleged characteristics of autistic people but is probably nothing like any real autistic person, particularly very much unlike the membership of ASAN.

This person is a girl, completely nonverbal, diagnosed as autistic at the age of two.  Though she is unable to speak, she uses a computer on which she can type fluently.  She also has synesthesia and can utilize this as a superior ability to learn words.  Her parents completely accept her, though her brother and some of his friends seem to misunderstand some of her behaviors.  She hates autism speaks and is against them trying to change her autistic behavior. 

I've been to presentations on facilitated communication where they did not bring any autistic persons who used this technique, though alleged there were autistics who could type fluently.  If these people exist then I wonder why the FC proponents did not bring them in so I could get a demonstration of this technique.

I've seen one autistic individual accompanied by an aide who held his hand, while he allegedly typed out messages on a ouiji type board that was not an electronic communicator or computer.

I've seen a few other autistics who couldn't speak but could type out a few simple words and sentences on communication devices.  The words and phrases were quite limited and nothing close to fluent communication.  

One exception to this rule that I've seen first hand is Tito (I don't remember his last name), a boy (probably now young man) from India who was able to type out stuff with one finger using a communicator.  His communication is quite fluent though he has little or no spoken language. 

I've yet to see a single example of a nonverbal autistic person who could type out words fluently on a computer using touch typing with all fingers.  Until I see such a person, I'm going to be cynical that even one of them exists. 

Even more astonishing, this animated individual represents the viewpoint of ASAN, yet is so much unlike the vast majority of the membership of ASAN all of whom are quite verbal.  They were probably mostly diagnosed with Asperger's without a speech delay rather than autism with a speech delay (assuming they were diagnosed at all, other than by a self-administered online quiz or by themselves). 

This video was apparently made to solicit donations to the Autistic Self Advocacy Network, who, in the past, have accused Autism Speaks of being Robber Barons who, according to their convoluted logic, somehow steal money from communities and spend it inappropriately.  As I've said before, I don't understand ASAN's reasoning behind this. 

For anyone who wants to view the video, I've linked to it above, enjoy.

Wednesday, November 27, 2013

ASAN's joint letter to Autism Speaks' sponsors

I see that the Autistic Self Advocacy Network is at it again.  They have recently written a letter urging sponsors of Autism Speaks to withdraw their support of the organization they loathe so much. 

To support their position they use the same old and tired talking points that we've heard from them ad nauseum and not coming up with any new ones.  For any of the uninitiated who happens to read this and are far less jaded than myself, I'll briefly recap: 
  • Autism Speaks has no members of the autism spectrum on the advisory boards or in positions of power to influence their policy.  Now that John Elder Robison has resigned from the science and treatment advisory boards, they are reemphasizing this point as Gadfly predicted they would.
  • Autism Speaks primarily funds scientific research and only spends 4% of their budget on "community services" (whatever this nebulous term means)
  • Autism speaks engages in fund raising using offensive rhetoric. 
  • Autism speaks somehow(I don't understand how) takes money away from communities with their fund raising drives that could go to other things that ASAN regards as more useful than the stuff that Autism Speaks already spends money on.
I've previously discussed the issue that Autism Speaks' supporters are primarily parents who are looking for help for their minor children and parents make decisions for their children and the fact that the 96% of funding on scientific research is a goal consistent with Autism Speaks' stated philosophy and that of their predecessor organizations, Cure Autism Now and the National Alliance of Autism Research.  I'd like to address some more specific points in this post.

ASAN implies that Autism Speaks holds a gun to people and forces them to give them money. and if they stopped doing this, then the communities would have more money for these vague services and objectives and Autism Speaks would have less money that is not being usefully spent.  I don't understand this as Autism speaks is not the government and does not have the power to tax people.  Their donations are only done on a voluntary basis.  No one in these communities who feels money is being taken away from them has to give AS a dime. 

ASAN has invoked their fellow ND, John Elder Robison's name in this protest letter.  Interestingly enough John Robison has chastised me for what he called my unrelenting negativity and not proposing positive solutions to help persons with autism and their families.  Isn't ASAN now doing the same thing Robison accused me of and isn't it ironic they are invoking his name in this letter? 

If 100% of Autism Speaks capital (aside from administrative costs) should be spent on "community services", then what exactly are these services, how should they be funded and how can ASAN (or anyone else who wants them) make their case to the public that they should be funded and has ASAN adequately done this?  I believe the answer is no.  They have claimed (at least at one time) that autism wouldn't even be a disability if it were adequately accommodated.  That if these accommodations were provided for, autism would go from being a disability to a mere "difference".  Yet they have been thoroughly vague (at least in my opinion) as to how this can be accomplished.  How the services they want to spend money would do this and why we would have no need for scientific research to find treatments or a cure. 

ASAN has every right to conduct walks and fundraisers to help raise money for these community services  In this country where we have the free enterprise system, there is no reason they could not raise the millions that Autism speaks has if they could show compelling evidence that these were more beneficial. 
Other than their internship with Freddie Mac program, I don't see any evidence they have ever done this.  They only want to tear down Autism Speaks and people who want a cure for autism rather than offering their own constructive solutions and raising the needed capital and stating how autistic people can be helped. 

They have succeeded to a large degree of the government hearing their voices.  To date, they have four seats on the IACC as compared to the anti-vax movement's one seat and the zero seats held by pro-cure autistics since the IACC's inception.  However, the IACC is largely window dressing and, for this reason, they  haven't been able to get much accomplished by serving there. 

So far they have only seemed to want to take over Autism Speaks and their hard earned capital by infiltration.  They have succeeded to a degree by getting Robison in their organization and the nearly half million dollar grant acquired by Laurent Mottron and company.  The likely reason for this is due to their own ineptitude in acquiring this capital themselves.  Another reason is that most of the people who donate money are parents of children who want a cure for their children and don't ascribe to ASAN's POV.  There aren't enough people with sufficient funds who would donate money to ASAN so they could accomplish these lofty goals. 

In the same vein of Robison's words, I suggest instead of trying to tear down people they don't like that ASAN engage in constructive solutions such as being more specific about how autistic people can be helped, how they can be accommodated and how these accommodations could eliminate any need for biomedical research or a cure.  They could do fundraising walks, give benefits and raise the capital in the same manner that other charities do.  I won't hold my breath though. 

Sunday, November 17, 2013

The Mu Rhythm Bluff is now available in paperback

In case anyone's interested, my novel, The Mu Rhythm Bluff , is now available in paperback as well as in kindle ebook form. 

When I first self-published it over 8 months ago I was unaware that you could do a paperback version easily without greater capital requirements than are required to publish an ebook on KDP. 

 There were some people who told me they wanted to read the book, but did not have a kindle or possibly the inclination to download and use the app that Amazon offers for free. 

I wish I'd been better informed about my options previously, but I guess it's better late than never in case anyone prefers the physical version over the ebook version. 

I doubt this will do much to increase my sales.  I've only sold 42 copies of the Kindle version so far in 8 months and usually for an unknown author people will buy the Kindle rather than paperback because it is less expensive.  If you do want to buy the paperback version rather than the ebook version it will cost about seven dollars more. 

However, now anyone who wants to buy a physical version of my book has the option of doing so. 

Thursday, November 14, 2013

An idea for Autism Speaks and Neurodiversity

Suzanne Wright’s very recent op-ed piece and John Robison’s resultant resignation from the Autism Speaks advisory boards he served on for more than three years have gained a lot of traction on the blogosphere as well as Robison’s FB page as of late.

Ms. Wright has a very severely autistic grandson for whom she wishes a cure or a treatment which can help mitigate the hardships he and her daughter have to endure. She wrote a piece on this subject, possibly with the intent of helping to fund raise, which may have had less than tempered rhetoric.

Predictably, the neurodiversity movement (and possibly other persons with autism and/or their relatives as well) took umbrage to her essay.

John Robison, as I mentioned before, tendered his resignation and ended his affiliation with the highest profile of autism funding, research and advocacy organization because of this essay.

The neurodiversity movement, including Robison, has been critical of the advertising techniques that AS has used for years. They claim that these are intended to evoke pity and show a lack of respect for autistic people.

Practically since autism speaks’ inception, a variety of persons, mostly affiliated with the neurodiversity movement, has questioned why there are no autistics on the board or in executive positions with autism speaks. This probably contributed to Robison’s subsequent appointment to the organization. After this, there was little commentary or criticism of autism speaks exclusion of persons on the spectrum in positions of power or policy making in their organization.

All bets are on whether or not Robison’s resignation and subsequent vacancy of an autistic representative of AS does not elicit the same criticism and outrage that it did prior to Robison’s affiliation with AS. Also bets are on as to whether or not the ND’s will neglect to acknowledge or conveniently forget Kerry Magro’s involvement with the organization they find so odious.

Roger Kulp, one of the frequent commenters on my blog, has expressed a desire to fill the vacancy that Robison created. It is quite clear from what I have read of his life story, he has been far more impacted by his ASD than Robison has by his. Though I believe Roger may be a valuable voice, I’m not too keen on non-scientists serving on scientific advisory boards. Perhaps Roger could be a useful asset to autism speaks without serving in the same capacity as Robison did; I’ll address that issue later in this post.

John Robison has criticized me for what he believes is my unrelenting criticism of him when he’s expressed positions or done actions which I disagree with. He has stated that instead of being negative and criticize him (or others) I should offer my own positive or constructive solutions. This has not been easy for me, as I believe there are no quick answers or easy fixes for the problems autism causes. However, maybe he has a point. In this post I’ll suggest what I believe may be something constructive that I think would address the issues that Robison and neurodiversity has brought up as well as the issue from Autism Speaks’ point of view of how they can effectively advertise fund raising without perceived dissing of autistic individuals who may not like having someone state that are like lost children or that they are defective or their lives are abysmal, etc.

I suggest that autism speaks recruit volunteers from the higher end of the spectrum such as Roger, myself and others who would discuss the problems autism has caused them in their life. I could talk about my fine motor problems, ornithophobia, getting fired from jobs, lack of social relationships and the inability to concentrate and get things done during the day and my loud voice and the fact my self-esteem was affected by having been in special education for eight years. Roger could publicly speak about his experiences of seizure disorders, elopement, etc. This could help with fund raising without causing offense as we would be speaking for ourselves and not for all the autistic people that Suzanne Wright’s detractors have perceived that she has painted with a broad brush. This would help to generate much needed revenue into the organization to help find the causes of autism and a cure.

These, of course, would have to be voluntary unpaid spokespersons as it could be construed as a conflict of interest if autism speaks offered any financial incentives for autistics to speak.

Another less obvious point in favor of this plan would be that AS would be living up to it’s name and it would be actually autistics who are speaking.

One problem with this approach might be that if people on the severe end of the spectrum who could not communicate effectively were not included this would diminish the credibility of the spokespersons. Of course, AS could emphasize that if autism impacts people this mildly afflicted think of what it is like for severe persons. They could then show footage of more severely afflicted persons without any commentary and let the images speak for themselves. This would address the problems ND has had with commentary like Allison Singer’s about driving herself and her child off a bridge. Of course, they could also have spokespeople such as Dov Shestack who would not be speaking with vocalizations but using a communicator to get his point across.

I believe this addresses the problems of autism speaks’ fundraising techniques, their lack of inclusion of actual autistic people in the process, and Robison’s commentary that I don’t offer constructive solutions.

I myself have so many personal issues with autism speaks, such as their funding of Mottron, Alex Plank and the insurance mandates and their autism in the workplace program which just shows autistics working for other employers and not autism speaks themselves that I would probably have to pass on this even if someone from AS happened to read this blog post and thought this was a good idea. But I know Roger wants to be involved with autism speaks in some capacity whether or not he’s actually interested in doing what I’ve suggested. There may be others on the spectrum who might be interested in this.

One issue, I’ll concede that this does not address is the ND movement’s desire to hijack the capital of AS and use it for their own purposes, such as ASAN complaining that only 4% of funding of autism speaks goes for service-related issues rather than scientific research. However, I feel if they want funding to serve their needs they should form their own organizations and solicit funding themselves. They are free not to donate to autism speaks or any other group they don’t believe goes along with their cause.

If anyone does not approve of my idea and has a better one, then I guess they can pursue it or blog about it.

Wednesday, November 13, 2013

John Robison resigns from autism speaks and invokes Harold Doherty's "royal we"

In the occasionally some news is good news department, Gadfly is happy to report that neurodiversity proponent John Elder Robison has tendered his resignation from the scientific advisory board of autism speaks.  It was in response to this op-ed piece that autism speaks founder's wife, Suzanne Wright wrote.  Even though Ms. Wright made the fallacious statement that three million children had autism and ignored the adults such as myself, she did make some good points about the angst that family members of autistic children go through.

Robison accepted a position on Autism Speaks' scientific advisory board apparently believing in the old saw that it's more effective to piss inside the tent than outside of it.  Much to his disappointment, autism speaks did not do a 360 degree turnaround and become a neurodiversity oriented organization or at least an organization that would totally cater to his point of view. 

In response, he wrote a letter of resignation to AS president Liz Fields.  He wrote:
I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.

Renowned blogger Harold Doherty first wrote of the tendency for extremely high functioning persons on the spectrum to speak for all autistics on planet earth.  He referred to this as "the royal we". What right does Robison have to speak for 100% of us.  He doesn't speak for me and I suspect at least some others on the spectrum, so what right does Robison have to use the royal we.

Robison speaks of perceived needs: 

Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful.

Robison should have realized that autism speaks was primarily designed to be a funder of scientific research to study the biology of autism in the hopes of finding treatments and even possibly the cure that he opposes.  It was never their intention to engage in mass funding of community services.  In fact, Cure Autism Now, one of the organizations that merged with the National Alliance for Autism Research to form autism speaks, had as its bylaws that they would only fund medical research.  Robison accepted the position on the scientific advisory committee not something meant to fund community services, even if it was his intention to turn this around.

Robison continues to go on, implying that the majority of adults oppose autism speaks' goal of curation and also how there are no autistic voices in autism speaks and the organization is only for parents. 

Yes, autism speaks was formed by parents who make decisions on treatments for their children.  That is a fact of life.  I am not opposed to having actual persons with autism do some sort of work within autism speaks.  I'm gratified they have Kerry Magro in their employ.

I'm not in favor of having someone who dropped out of the tenth grade serve on a science advisory board.  I'm not in favor of someone claiming to be on the autism spectrum yet who states that he does not have a disability serving on a board, claiming they are a stakeholder, when in fact they have no true dog in the fight. I don't understand how Robison's psychologist friend could have diagnosed him in good conscience when he has stated he has no disability.  I'm not in favor of having neurodiversity proponents serve in an organization whose stated philosophy is that autism is a disease that needs a cure. 

I'm glad Robison is no longer affiliated with autism speaks.  I realize it does not change a whole lot, but at least it has positive symbolic overtones. 

I hope the next step would be for Alex Plank and Robison junior to no longer accept funding from AS for autism talk TV or hopefully AS will have the good common sense to terminate funding for that endeavor. 

The government has also stated that they wish to cure autism vis a vis the combating autism act.  I guess they have not written an op ed piece that offends Robison enough so that he'll resign from the IACC and from the NIMH research panel which reviews research.  I wish he'd exit those posts also but I guess I shouldn't get my hopes up too high. 


Sunday, October 20, 2013

John Robison's take on neurodiversity

As I posted previously, John Robison has a new gig teaching a course on neurodiversity (along with some other people) at the historic institution William and Mary College. 

Apparently, inquiring minds wanted to know exactly what Mr. Robison's stance on neurodiversity is.  He wrote a post about his efforts at his attempt to oblige them.

On neurodiversity: 
I believe neurodiversity is the idea that neurological differences like autism and ADHD are the result of normal, natural variation in the human genome. This represents a new and fundamentally different way of looking at conditions that were traditionally pathologized; it’s a viewpoint that is not universally accepted though it is increasingly supported by science.

Does this mean that Robison believes that mutations such as fragile X, Rett's syndrome, Angleman's syndrome, etc. are natural variations such as genes for eye and hair color and height are?  Though there are variations in height that probably follow a normal distribution, someone extremely short, such as a dwarf. may have a genetic mutation or disease.  Does Robison discount possible environmental influences on autism, such as thalidomide exposure, cocaine ingestion that appear to have some association with at least some spectrum disorders?  What about cancers, such as the BRCA mutation that is found in breast cancers.  Are cancers natural variations.  Then why don't we have oncodiversity or cellular diversity as a philosophy?  He makes a completely inconsistent statement in the next paragraph: 

We are realizing that autism, ADHD, and other conditions emerge through a combination of genetic predisposition and environmental interaction; they are not exclusively the result of disease or injury.  Which is it, autism is a natural genetic variation or in some cases it is a disease or injury?  As my former psychoanalyst used to say, you can't have your cake and eat it too, Mr. Robison.

He makes a very offensive statement next: 
We are not sick. We are different.
Does Robison believe that a child who can't speak, soils themselves, engages in self-injury and wanders away so that their life is endangered is not sick?  If that is the case, why did he join the scientific advisory board of autism speaks and reviews grants for the government to study autism if it is just a difference? 
Faculty and staff are just as likely to have different brains, especially in the sciences.
He trivializes autism by comparing college professors to those that really suffer from this affliction. 
while working to remediate disability has as its goal the best possible life quality.
If someone is disabled then why aren't they sick? 
When a fellow has one leg, and he wants to get around on his own, we don’t say, “He needs a cure.” We say, “He needs help remediating his disability.”

Who says this?  I've never heard of limb diversity or mobility diversity.  Why doesn't someone need a cure to have a leg restored, even if one is not available given the current science?  Robison then goes on to compare the use of a cane or prosthesis to remediating autism, but gives no examples of how this can be done.  As far as I can tell, Robison has not suggested how autism could be remediated.  If it were completely remediated why wouldn't this constitute a cure?  Again, Mr. Robison, you can't have your cake and eat it too. 

No neurodiversity advocate in his right mind would oppose developing tools to remediate disability from autism.

It would appear then that most neurodiversity advocates are not in their right minds, since they consistently say that acceptance and accommodations are the solutions to autism and in at least some cases that autism would not even be a disability if this were done. Or some say the problem should be ignored altogether like Ari Ne'eman's statement that social pleasantry should be eliminated as a criteria in hiring and evaluating people's job performance. 

Robison then goes on with the offensive stereotypes of how autistic eccentricity is associated with high intelligence or giftedness. 

It is appalling that William and Mary would offer a course in this and would enlist someone who did not even finish the tenth grade to help teach this. 

Hopefully a cure for autism will be found someday and perhaps now we can add at least some amputees on the list of people that Robison manages to trivialize. 



Sunday, October 13, 2013

Make Me Normal: An autism documentary neurodiversity does not want you to see

Amidst the torrent of pro-neurodiversity film documentaries such as Loving Lamp posts, neurotypical, etc.I've found a figurative diamond in the rough.  A very interesting documentary about teens with autism and asperger's made in Britain called "Make Me Normal" 

In this documentary, the kids express how much they dislike their autism and express a desire not to be autistic.  What would Ari Ne'eman who constantly uses the royal we think of this?  What would Alex Plank who states that autism equals good and that most autistics don't want to be cured think of this? 

Glad to have found this one, was interesting.  Neurodiversity may have to improve their polling techniques. 

Saturday, October 5, 2013

Does new research disprove neurodiversity and Temple Grandin's assertions that Einstein was autistic

Albert Einstein has been routinely diagnosed as autistic by a variety of individuals, Temple Grandin being the most prominent of these. Einstein allegedly could not speak at the age of three. He also dressed in very casual clothes, wore slippers and had unkempt hair and these are largely the basis of these assertions.

As I stated in my essay on that topic, there is evidence that Einstein’s speech delay may have been apocryphal. Denis Brian in his book, Einstein A Life stated Einstein’s sister told a story that when she was born and 2-year-old Einstein was shown his sister he said, "where are the wheels" when he believed she was a toy.

One of the arguments that is routinely made by individuals in the neurodiversity movement is that because Einstein was autistic and his intelligence is considered an autistic gift is this is one reason autism should not be cured. Temple Grandin has implied that Einstein’s genius is a result of autism or at least autistic traits.

To the best of my knowledge, there is no scientific evidence supporting these assertions.

As many people know, pathologist Thomas Harvey stole Einstein’s brain after performing an autopsy on the deceased physicist. He kept many pieces for himself and gave others to a variety of neurologic researchers who found differences in Einstein’s brain as compared to typical age-matched controls. One of the most interesting discoveries that while Einstein’s brain may have had a normal number of neurons, he had far more glial cells than than a typical brain. This evidence suggests that it was glial cells rather than neurons that were a factor in contributing to Einstein’s aptitudes and intellect. At one time glial cells were believed just to hold neurons together and provide maintenance support for them. Now, there is increasing evidence that glial cells provide more than just support for neurons and may be a more important part of the central nervous system than was originally thought. However, this is another topic.

Is there scientific evidence that parts of Einstein’s brain were qualitatively different than postmortem brains of those diagnosed with autism? a recent study suggests that this may be the case. The researchers found that Einstein’s corpus callosum had more extensive connections than comparison control brains. Unfortunately, this study has recently been published and is behind a $35.00 pay wall and I have not been able to read it yet. There are various ways I might be able to read the study without paying, but I have not exercised these options yet.

In comparison, a variety of studies on the corpus callosum of post-mortem autistic brains shows exactly the opposite, i.e. autistic corpus callosums have weak connections between the left and right hemispheres and, in some cases, autistics have a smaller corpus callosum or none at all. There have been apparently some studies showing that individuals missing a corpus callosum demonstrate symptoms of autism.

It would appear that Einstein’s brain, at least in this area, may be qualitatively different than in individuals with autism. Perhaps people can stop trivializing this disability by claiming that Einstein had it or had traits of it.

John Robison to teach course on neurodiversity

I came across this article stating that well-known Asperger's author John Elder Robison is going to not only teach a course on neurodiversity but is going to be a scholar in residence at William and Mary College in spite of the fact that he never completed high school. 

Aside from the obvious inanity of a high school dropout being a college professor, the article lists Robison's definition of neurodiversity: 

Neurodiversity is the idea that humanity is by nature neurologically diverse – we have different ways of thinking that are founded in structural brain differences – and that diversity is essential to our success as a species

This is a different definition than Michelle Dawson gave me which states the neurodiversity is the idea that neurologically divergent people have basic human rights.  It also differs from the Wikipedia definition:

Neurodiversity is an approach to learning and disability which suggests that diverse neurological conditions appear as a result of normal variations in the human genome.[citation needed] This term was coined in the late 1990s as a challenge to prevailing views of neurological diversity as inherently pathological, and it asserts that neurological differences should be recognized and respected as a social category on a par with gender, ethnicity, sexual orientation, or disability status.

Neurodiversity is also an international online disability rights movement which has been promoted primarily by the autistic self-advocate community (though other disability rights groups have joined the neurodiversity movement). This movement frames neurodiversity as a natural human variation rather than a disease, and its advocates reject the idea that neurological differences need to be (or can be) cured, as they believe them to be authentic forms of human diversity, self-expression, and being.

So, it would appear the gist of ND as we know it is that certain individuals should live their lives as cripples and be handicapped. 

So, essentially what Robison says is that if certain individuals were not disabled(he has stated he no longer has any disability whatsoever) we'd have some sort of failure of the homo sapien species.  I'm curious what Robison believes would happen to our species if autism and other neurologic conditions were cured.  I'm also curious as to what scientific evidence he can provide that this would be the case. 

Robison, who serves in an advisory capacity to autism speaks as well as the federal government, has stated his beliefs on whether or not autism is a disease and whether or not a cure should be found:

All of the science to date says autism is founded in structural differences in the brain. Differences are stable things. They are not diseases in need of a cure. Taking away the difference is – to me – tantamount to changing to another person. In any case, the idea of such brain configuration is in the realm of science fiction today.

Robison, who is not disabled (by his own say so) seems to have a flippant attitude toward those of us who are disabled and who would want a cure for our conditions.  So, I have to wonder if this course Robison will be teaching will state that kids who pound their heads into walls, can't speak, wander off and die in accidental drownings and are hit by cars are not diseased.

This Curriculum and Robison's involvement in it is insulting to me as an individual who is disabled and has to live a less satisfying life than someone who is not neurodivergent. 

Wednesday, October 2, 2013

One good thing about the government shutdown.

Though Age of Autism has a lot of things to say I don't agree with, they've reported some interesting news Though i'm not happy about the government shutdown, it looks like some good will come out of it.  It looks like the government shutdown will cancel the next meeting of the IACC.  That's about the best news for autistic people i've heard in a long time.  Unfortunately, Matt Carey and John Robison will continue blogging and being representatives for autistic people.  Scott Robertson will still spend time with ASAN claiming that I and others should be crippled and sick.  Maybe Noah Britton can come up with a more interesting t-shirt design than his 'my body my choice' schtick and provide some sort of comedic act or behave in some outrageous way to bring some levity to the situation.

Saturday, September 14, 2013

bizarre rhetoric from Ari Ne'eman: Neurodiversity plays the "murder card" once again

Lenny Schafer alerted me to an article written about the alleged attempted murder of Isabelle Stapleton by her mother, Kelly, on his facebook page.  In the article, prominent neurodiversity activist Ari Ne'eman once again resorts to one of the oldest dirty tricks in the book the ND's resort to any time a parent murders their autistic offspring or allegedly attempts to do so.  He writes:

I think there certainly is a divide, and there has been for some time," said Ari Ne'eman, president of the Autistic Self Advocacy Network in Washington, D.C. “The picture of autism that has been presented in the public eye is not consistent with how we see ourselves.

Note that this is part of a pattern on Ne'eman's part to resort to a phenomenon that renowned blogger Harold Doherty has referred to as "The Royal We".  Where Ne'eman attempts to speak for all autistic people, though his Asperger's or autism is nowhere near typical of the vast majority of those on the spectrum, myself included.  No, Ari, I am an individual, you can't get away with speaking for me or anyone else who may happen to disagree with your way of thinking. 

He goes on to say: 

Autistic people deserve the same protection under law, he said, and “we are profoundly concerned when groups try to present murder as justified or understandable on the basis of the victim’s disability.”

What person with autism has not received the same protection under the law?  The article goes on to say that Kelly Stapleton will be arrainged for attempted murder.  She will be prosecuted.  Even though Ne'eman may not like this, the U.S.A. is not nazi Germany or Stalinist Russia.  Ms. Stapleton is legally entitled to a trial by a jury of her peers.  Until she is convicted, she's innocent until proven guilty or at least found guilty in a court of law.  The law is applied in the same manner as the attempted murder of a non-handicapped child by their parent(s). 

It is not surprising that Ne'eman's most astute statement is saved for last:

Parents do not kill kids because a service system is inadequate," Ne'eman added. "They kill their children because media and a disturbing number of people send them the message that that is OK or at least understandable

No, I don't think so, parents do not kill their children because they happen to read reports in the media that Ne'eman alleges exist saying it is okay or understandable for them to do so.  It seems implausible that most parents who kill or attempt to kill their autistic kids just happen to read media reports and then say to themselves, "oh, okay, guess it's okay for me to put my kid to sleep."  They do it out of insanity exacerbated by the frustration of having to raise an autistic child. In fact Ms. Stapleton has authored a blog documenting her frustration in dealing with her child's disability.  Autism is a horrible disability that brings out the worst in desperate people.  Of course, thankfully, the vast majority of parents, no matter how far they're pushed off the deep end don't go as far as murder.  This is not to say that the murder of autistic children is ever justified or even understandable. 

As Lenny correctly pointed out in his facebook article, Ne'eman ( and probably other ND's) are just projecting their own anger and hatred onto all parents of autistic kids. ND is the 21st century incarnation of Bettelheim.

Monday, August 5, 2013

Are autistic men pedophiles? Bizarre stuff from Temple Grandin's mom

I've just read  a very offensive,at least to me, article written on the Daily Beast allegedly by Temple Grandin's mother who implies that many autistic men are pedophiles who spend their time looking at child pornography and end up being registered sex offenders.  Nearly three years ago, I wrote about Nick Dubin, a neurodiversity activist who as a matter of public record was arrested by the FBI for downloading and looking at child porn.  Dubin, a licensed clinical psychologist and one-time director of a school for special needs children, has made the somewhat dubious (at least to me) claim that he himself is on the autism spectrum.  I'm not sure what happened to his case, whether he plea bargained, was convicted or acquitted.  Other than this I don't know of a single documented example of an autistic pedarest (or wannabe child molester).  I wish Ms. Cutler would provide one but she does not.   

Ms. Cutler makes the entirely alleged (with the emphasis on alleged) claim that an autistic man brought his computer into a repair shop and the technicians found child porn on his hard drive.  No name is given, no link or documentation whatsoever is provided as to the veracity of this story. 

She goes on to make the bizarre and bigoted claims (with no evidence) that autistic men as a general rule have abnormal sex drives and need children to teach them to have sex and this somehow drives them to download child pornography yet does not give a single example (other than her alleged one) of this phenomenon in practice.  She claims to quote University of North Carolina professor Gary Mesibov who seems to somehow concur that as a rule many autistic men are pedarests and pedophiles.  She provides no documentation of where Mesibov has said this. 

I wish she'd give some sort of documentation of this or some sort of published study that claims that autistics have a tendency toward pedophilia.  Or if anyone else reads this blog and wishes to comment on an example I'd be interested in hearing about this. 

I hope people can understand why I find this most offensive.  I wonder if ASAN will get involved with this, since they seem to take offense at something like the Ransom notes campaign which would seem to be considerably trivial compared to this.  I've written an email to the Daily Beast urging them to retract this article or at least apologize for it.  editorial@thedailybeast.com  I hope other people will do so also.  Somehow I think this is more offensive than some deragatory song lyrics or other (at least to me) lesser or more trivial matters that petitions have been started over. 

Monday, July 29, 2013

"Neurotypical" Ho hum

I just saw "neurotypical".  Naturally I was piqued by the trailer of the black guy in the movie saying he did not want to be cured and a neurotypical life was not necessarily better than an autistic life.  This would also pique pro ND people, anti ND people as well as others not as jaded as myself, who would be shocked to believe anyone could say such a thing if they have newly diagnosed children and are new to the whole autism scene. 

The girl talking about how just because dating does not happen to Temple Grandin does not mean it doesn't happens to others was slightly interesting and provided a smidgen of comic relief. 

Most of the documentary was rather boring.  Not much insight into what life is like for an autistic, even a higher functioning one.  Mostly boring discourses about playing tag, how they feel about certain social interactions, etc. 

It became slightly more interesting when ASAN member Paula Westby-Durbin came on, stating that she had not heard about PDD or autism until about 2006 (when she would have been well into middle age) and then apparently got a diagnosis somewhere but is quite vague as to where and on what basis she was diagnosed. I had wondered about her and I wonder what sort of childhood she had and if her parents sought medical treatment for her as a child.   She gives some slight explanations such as she lacked friends growing up, yet was successfully able to find a husband and apparently has a job where she will be paying off a mortgage on a house. 

At the end of the documentary, they show captions giving the names of these people and a little bit on their background.  Apparently, the filming was not done properly and there was not enough room on the screen to read everything and they were flashed for not nearly long enough for anyone to really take it in and read it properly.  I'm perplexed as to why PBS would air something so poorly edited. 

Adam Larsen, the filmmaker, gave some commentary at the very end which started out as somewhat astute stating that the media only concentrated on severe children or people who were savants.  Though the latter may be true, I'm not even sure how the former is true.  He then went on to talk about how a number of autistics don't want to be cured and are comfortable with who they are.  Then stated his own bias where he apparently believes that autism is a legitimate form of neurology rather than disease. 

It's unfortunate they did such a good job of marketing the film but the content was so lacking. 

I'm still waiting for someone to make a documentary about autistic children in special schools, frustrated with their life and as adults, frustrated that they can't keep a job or find a mate.  However, I won't hold my breath. 

Thursday, July 25, 2013

"Neurotypical" or neurodiversity propaganda ?

I see that soon a new documentary film which appears to extoll the virtues of neurodiversity is slated to air on PBS on Monday, July 29, at 10 p.m.  I looked at my local PBS station for the listings though and could not find it.  But hopefully I will see it eventually. Perhaps I should not judge this film before seeing it, but it seems heavily pro neurodiversity.   Here is the trailer:  We see a gentleman stating that he is opposed to people trying to cure him and that being a neurotypical is not a better way of life but a different way of life.  First of all, a cure for autism does not exist and in the words of Far From The Tree  author Andrew Solomon it's sort of like arguing intergalactic space travel.  If a cure did exist I would not be in favor of forcing it on this individual.  I would want a cure for myself and for others who need it. 

I believe being a neurotypical is a better way of life.  I don't see how anyone can argue, not having decent interpersonal relationships including marriage, being able to earn a decent living and being able to be productive and get things done during the day is not a better way of life.  Certainly those on the severe end of the spectrum who can't speak, aren't toilet trained and self injure themselves are certainly leading a different way of life, but it certainly isn't better. 

I also see ASAN's Paula Westby Durbin is featured in this too, so more evidence of a pro neurodiverse documentary. 

I hope that no one will take this documentary seriously and that research leading to finding legitimate treatments and ultimately to a cure will still be pursued. If I ever see this documentary I may have more to say about it.  Stay tuned. 

Wednesday, July 17, 2013

Autism not a disability but a gift and super ability?

I see that David Ellams, a computer programmer and app developer allegedly somewhere on the autism spectrum, is trivializing my disability and those of others by proclaiming that autism spectrum disorders are not only not a disability but a gift and a "super ability". 

My ASD, and I suspect that of most others, it not a gift but a horrific disability.  It causes immense pain and suffering.  He seems to believe that it's a given that all autistics are super gifted with computers.  Any one of us could become a Kevin Mitnick or some other kind of super coder or hacker.  Most autistics (including myself who took coursework in computer programming, but was unable to enter the profession) will never be computer experts, no matter how much spin this individual wants to put on it. 

This was apparently in response to a petition protesting some offensive song lyrics.  How signing this petition, as Mr. Ellams alleges, will show the world that autistic people have 'super abilities' is beyond my comprehension and defies all tenets of common sense and logic, even for a neurodiversity proponent. 

Mr. Ellams also uses what Harold Doherty terms as "the royal we" that some other neurodiversity proponents are fond of using:

We are not ill and there is no cure since we do not need curing, we need to re-educate the world on what Autism really is…

If this crap weren't enough Ellams makes even more irrational statements:

They are each mini Geniuses in their field and with the help of our sister company NextGen Software Ltd we can help empower and inspire them to be anything they want t be, if it is to do with programming and Computers then the FREE NextGen Developer Training programme is for them. Since we know much like myself, we are often very gifted when it comes to computers, in fact we find them incredibly easy,

It would appear that Mr. Ellams has tremendous conflicts of interest as he owns both a yoga for autism company and the next gen software, ltd, where he apparently makes money for the empty promise that an autistic super genius can become a computer programmer or anything else they want. 

I wonder if anyone would care to start a petition against Mr. Ellams' s statements and his yoga and software businesses. 

Wednesday, July 3, 2013

Matt Carey's bizarre take on the cause of bullying of autistics

Matt Carey writes blog posts for the well-known blog Left Brain Right Brain. He appears to have at least some neurodiverse leanings.  It would appear that Mr. Carey has a penchant for making factual errors in blog posts or writing things that don't jive with any established facts.  For some reason, he at one time anonymously posted under the pseudonym "Sullivan". In addition to regularly writing this blog, he's also a public figure in that he's a citizen member of the Interagency Autism Coordinating Committee, a group that gives policy recommendations to the federal government. 

He's concerned (as am I) with the fact that autistic kids are often bullied and that bullying can lead to a variety of psychologic problems in the victims and even suicide in some cases.  He's written a post on the subject.  However, he has a rather strange explanation for the reason autistic children are often bullied: 

Having recently seen some pretty horrible anti-acceptance images I feel compelled to make this statement: yes, the portrayal of autism by many parent advocates contributes to bullying. If we don’t accept our own children, with their differences and disabilities, if we promote a message that our children and adults like them are not to be accepted, we contribute many problems, bullying being one. Yes, I understand the argument that when some reject acceptance “it’s the autism not the person”. I reject that logic. It’s damaging the way we as parents often portray our kids. It contributes to bullying, and bullying contributes to many bad outcomes.

As is par for the course for Carey, he neglects to cite even a specific example of a negative image and how it could lead to bullying. 

I grew up as a child who was frequently bullied. It was in the 1960's, decades before hardly anyone had heard of autism, let alone publically produced anything that could be construed as a negative image of it.   Somehow I don't think nondisabled children or even other special education children who might bully someone go around reading the blogs and the internet and whatever it is that Carey construes as "anti-acceptance images".  Kids just like to victimize someone who they feel is odd and get some sort of kick out of it. 

As someone who grew up during the Bettelheim era and actually lived through it, I resent Carey implying that somehow bullying is the parents fault, his baseless statement that parents don't accept their own kids, and that bullies just happened to see negative images and that is one of the explanations for their behavior. 

There is no doubt that bullying would be done regardless of what images parents or the media portray of autism.  It is ridiculous to think that prejudice or animus toward a person with autism is because of parents. 

I wonder what Carey's explanation is for bullying of kids who are short, overweight or have acne.  Are they not accepted by their parents and/or are negative images made of them? 

Finally, I am also curious as to what Carey regards as a negative image since he's so vague about it.  Is it that autism is a disease that should be cured?  That it's a disadvantage in life that causes incredible pain for the children and their families?  Or is it just that a cure for autism would be a good thing, since he seems to have at least somewhat of a neurodiversity perspective?  If this is the case, then I wonder why the federal government would appoint this individual to a post that came about under the Combating Autism Act whose purpose is to ultimately eradicate autism and who looks at autism as a negative thing that needs a cure. 

Tuesday, June 18, 2013

who's defending Alex Spourdalakis' murder?

In their latest cause celebre The Autistic Self Advocacy Network is calling for the prosecution of Alex Spourdalakis' mother, Dorothy, and his godmother  for his murder under federal hate crime laws. 

Alex was a  14-year-old 200 pound nonverbal severely autistic boy, so violent he often had to be put in four point restraints during hospitalizations. 

His mother and godmother apparently murdered him by stabbing him to death and slitting his wrists.  I agree with ASAN that his autism and even it's great severity and the fact that he was so difficult to handle does not justify his homicide. 

However, I do question ASAN in their infinite wisdom about how wise it is to spend federal tax dollars prosecuting him for a federal hate crime when his mother and her accomplice are being charged with first degree murder at the state level.  If there is ample evidence they did murder him in a premeditated fashion it is likely they will be convicted and sent to prison. It's possible they'll even receive the death penalty.  I know there have been some isolated instances of caretakers murdering autistic children and then getting light sentences.  However, even if they were prosecuted by the federal government, what guarantee is there, they would not get a lenient or even suspended sentence?  It seems much more viable to prosecute these people at the state level.  Of course, playing the murder card is nothing new for the neurodiversity movement. 

Most intriguing to this blogger is the following statement from ASAN: 

Many in the media have attempted to excuse Alex’s murder or sympathize with his killers, citing the challenges of his disability and the need to improve the quality and availability of service-provision. Such justifications are not unusual in the aftermath of such atrocities and they remain as inappropriate as ever

ASAN neglects to cite one specific example of this.  I perused a number of the media reports that I could find on Google news and, as far as I could tell, not one of them justified or attempted to defend this individual's murder. 

I'm curious as to where ASAN gets their sources and who in this instance (or any other for that matter) justified the murder of anyone who was autistic. 

I guess it's possible someone can enlighten me in the comments section (even anonymously) and I wait to hear any specific examples. 

Monday, June 3, 2013

Manuel Casanova gives my novel a plug

I'm very gratified that neuroscientist and neuropathologist extraordinaire, Manuel Casanova, has given  my novel, the mu rhythm bluff, a plug in his latest blog entry on his blog, cortical chauvinism.

Dr. Casanova's blog is one of my favorites.  Very few scientists pursuing research in the neurophysiology of autism are interested in writing blogs for the lay person so they can have a better how understanding of the latest brain research issues in autism.  Dr. Casanova is an exception to this rule.

So far I've only sold about 19 books and had 125 downloads the week I offered it for free.  I've tried to plug it in various ways but to not much avail.

Thanks to Dr. Casanova for helping me out.

Thursday, May 9, 2013

A sample of Steve Silberman's neurodiversity book?

For the past few years or so, Wired magazine journalist Steve Silberman has been writing a book about autism and neurodiversity. His claim to fame in the field of autism is a magazine article he published about eleven years ago or so with the somewhat offensive title The Geek Syndrome in which he spoke of the rise of autism in the silicon valley and at the very least implied that math, science and computer genes were the culprit.  I've already written about the fact that according to State Regional Center data, the rise of autism in the Silicon Valley has been no greater or less than the rise in diagnoses in other parts of the state.  This magazine article was apparently so popular that Silberman has decided to write a much longer book length manuscript with neurodiversity being one of the main themes.  I've had dialogues with Mr. Silberman, worried that he might trivialize my horrible disability.  He explained to me that was not his intent and convinced me not to judge his book by its figurative cover.  

I've awaited publication of Silberman's book with bated breath.  For some reason, it's taken him a rather long time to write it in spite of the fact he apparently has a publishing contract and has undoubtedly been paid an advance.  Originally, it was supposed to be published in 2013 but apparently it has been postponed until 2014.  Judging from the company he keeps with Ari Ne'eman and other sterling individuals from the ND movement, I'm utterly curious as to what he'll write.

Recently Silberman authored a piece in wired magazine nearly a month ago which apparently I regrettably missed. Had I known about it, I would have written a blog about it sooner. Of course, there's the old saying better late than never.

If Silberman's future book is anything like this article my worrying certainly wasn't for naught.

I'd like to dissect certain talking points of the author.

First he quotes the person who coined the word 'neurodiversity' Judith Singer:
  By autistic standards, the “normal” human brain is easily distractible, is obsessively social, and suffers from a deficit of attention to detail. “I was interested in the liberatory, activist aspects of it,” Singer explained to journalist Andrew Solomon in 2008, “to do for neurologically different people what feminism and gay rights had done for their constituencies.”

My autism distracts me and impairs my concentration far beyond what a nonhandicapped person is capable of.  I suspect it's the same in a lot of other people.  I wish I could have improved social life and I suspect wanting to have friends and romance is not being obsessively social.  Again, there is the offensive comparisons between women's and gay rights, when these people are not disabled and autistic people are.

One reason that the vast majority of autistic adults are chronically unemployed or underemployed, consigned to make-work jobs like assembling keychains in sheltered workshops, is because HR departments are hesitant to hire workers who look, act, or communicate in non-neurotypical ways—say, by using a keyboard and text-to-speech software to express themselves, rather than by chattering around the water cooler.

The reason the vast majority of autistics are unemployed are underemployed is because they have disabilities that impairs them from learning marketable skills such as plumbing, computer programming, going to law school etc.  Also, because they have loud voices and poor social skills which most people find offensive.  This is certainly true of people on the spectrum perfectly capable of speaking who have no need for keyboards or text to speech software, which certainly includes most members of the ND movement.  I'm curious as to what autistic persons Silberman has even met besides Ari Ne'eman and Alex Plank and John Robison who are certainly outliers.

 One way to understand neurodiversity is to remember that just because a PC is not running Windows doesn’t mean that it’s broken.

I suppose this statement is true if the computer is a Macintosh or is running Linux.  But a PC is certainly broken if there is a blue screen of death, there are not enough memory chips or the hard drive crashes.  This is a better analogy, in my opinion, for autism.  A Mac or a Linux computer is certainly functional, but a person with autism is impaired.

Silberman then goes on to give examples of persons with divergent thinking who went on to make great inventions or societal contributions.  All of these individuals had dyslexia, not autism, which apparently is the subject of Silberman's forthcoming book.  I suppose he could have mentioned Temple Grandin, but examples such as these are the exceptions and not the rule.

I was intrigued to find out that Ari Ne'eman and ASAN are working with the department of labor to develop jobs for autistic people.  It's odd that as far as I can tell ASAN has not written about this on their web page or anywhere else.  As I've repeatedly said, Ne'eman has never worked a day in his life or filled out a job application or had a job interview.  I suspect the same is true for the bulk of graduate students and post doctoral fellows who populate ASAN's memberships and executive board.  What the hell do Scott Robertson or Steve Kapp or Sarah Prippas know about employment?  I will have to learn more about this if it is true and possibly write a blog post about it in the future.

Glad I encountered this article.  I am even more piqued to read a copy of Silberman's book, possibly an advanced copy if I'm ever so fortunate.  Sounds like this book if it is ever published must be a doozy.  

Thursday, May 2, 2013

Gadfly's thoughts on Grandin's latest book

Late last night I finished reading Temple Grandin's new book, The Autistic Brain To date, I feel it is her most interesting book.  Also, it's extremely well written.  Of course, Grandin had an assistant author (as she's had for many of her previous books) work with her, so it's hard to tell how much of the writing or even research comes from Grandin herself.

Grandin now concedes she was mistaken about all autistics being visual thinkers which is gratifying.  

It deals with Grandin's pursuit of scientific answers about her own brain by becoming a research subject for various scientists.  Most recently, a group in Utah scanned her brain.  I already wrote A blog post about this previously.

To recap, the group didn't really find anything new or revolutionary that could be applied to all autistics in general or even Ms. Grandin in particular.  They found an increased brain volume.  This is a finding that has been found by other  groups in other persons with autism.

They found her left lateral ventricle was much larger than her right.  Grandin speculates that this could be the reason she's had trouble learning algebra and following directions.  Scientists have said it's possible that the right ventricle was damaged somehow and the left ventricle grew much larger to compensate.  This could explain some of Grandin's superior abilities in visual thinking and design, but more about this later.

Studies of her white fiber tracts using a technique called diffusion tensor imaging found highly connected areas of her brain to the visual cortex.  This is something else that could explain some of her talents.

It showed a larger amygdala which Grandin felt might contribute to her anxiety attacks.

Cortical thickness in her left entorhinal cortices was greater than controls.  This is a path that goes to the hippocampus, the structure in the brain that creates short term memories.  This might be why Grandin has exceptional memory abilities.

She also stated that her cerebellum was 20% smaller than typical controls in a scan she underwent under the auspices of neuroscientist Eric Courchesne.  She speculated that this might be why she's had impaired motor skills and has had trouble learning to ski.  I was also a research subject of Courchesne's not long after Grandin.  He found that part of my cerebellar vermis-a part of the cerebellum, but not the whole thing- was smaller than in normal controls.  However, this finding has not been replicated in autopsies of post mortem brains.  Motorically, many autistics are intact.  The cerebellum controls both fine and gross motor coordination, and Grandin's ability to draw and perhaps other perceptual motor abilities are not impaired.  I asked Courchesne why that might be and he told me that if the problem occurs early enough, a cerebellar impairment won't affect motor performance.  Developmental lesions are different than adult lesions.

In addition to overconnectivity in some parts of an autistic brain, there have been findings of underconnectivity to areas involving longer connections.  This may be why some abilities and social skills are impaired in autistic people while other areas, which have shorter connections to the brain, are intact or even greater than in non-autistics.  This may explain superior abilities in some autistics.

Grandin also had a visual tract that was 400% larger than a typical control.  However, it seems to me that drawing conclusions from one control subject is not really valid.

There is also the theory that this might help find a biomarker for autism, but I think we're a long way from that.  

One of the problems with these findings, rampant in autism research, is that they are limited to persons on the higher end of the spectrum since more severely autistic persons have problems with compliance and sitting still in a scanner which would cause artifacts in the readings.

Scanners are also limited in finding certain things and postmortem autopsies may be a better way to go, though there's a shortage of autistic brains. 

In the past, Grandin has implied that all cases of autism have one underlying genetic etiology, claiming that if autistic genes were eliminated from the gene pool we would have no creativity and every invention from the spear to the cell phone would never have been created.  Some years ago, I wrote a piece attempting to refute that notion.  She also stated that the reason autism genes have remained in the gene pool is that they serve some sort of evolutionary purpose.

Since her writings on that subject, the science seems to have refuted a lot of her past statements.  For example, work done by Jonathan Sebat and others has found numerous cases of autism are precipitated by spontaneous mutations that aren't inherited.  She now seems to have changed her tune to accommodate the change in times and concedes that there isn't one autism genes but rather many different genetic conditions, involving various modes of inheritance or spontaneous development of mutations can lead to this condition.

In spite of this, she still asserts that half of silicone valley are undiagnosed persons on the spectrum but provides no evidence of this.

One area in which she hasn't changed and is repetition from her previous writings is her pat solutions for helping autistic people become employed.  She states that obsessions can be channeled into successful careers and only gives one or two isolated examples and applies this to the entire spectrum.

It is gratifying that she emphasizes the importance of social skills in gaining and maintaining employment.  This is in contrast to neurodiversity advocate Ari Ne'eman, someone who has never worked or been to a job interview or filled out a job application,  who has stated that social unpleasantry in the workplace should be overlooked as a criteria for hiring and evaluating people's job performance. 

One aspect that I believe Grandin overlooks is the fact that neurotypical social skills can't be easily taught to autistics that that stressors in the workplace might trigger meltdowns and other episodes where socially unpleasant behavior will result in the autistic employee's termination.  She states that an autistic's attention to details make him suited for a job as an airport security screener, overlooking the fact that this is a job involving people contact under sometimes adverse circumstances which the autistic might not be socially adroit enough to deal with. 

Though I believe this book does have some flaws, I do recommend it as a worthwhile read. 

Thursday, April 11, 2013

Will Karl Deisseroth and company bring "clarity" to uncovering the etiology of autism?

I was interested to read a piece in today's L.A. times about a Stanford University scientist named Karl Deisseroth who has developed a new technique to see better inside human brains.  Neurons (brain cells) have a covering over the part called the axon which is a myelin sheath or white matter which helps transport electrical impulses down them so that they can communicate with other neurons.  The myelin sheath is made of fatty materials which cause postmortem brains to be opaque so that certain details cannot be seen.

The Stanford scientists developed  a technique where they replaced the fatty myelin tissue with substances that included acrylamide, bisacrylamide and formaldehyde.  These don't interfere with light diffraction the way the fatty tissue of myelin does, enabling various parts of a postmortem brain to be viewed that couldn't be otherwise.

The researchers call this technique CLARITY (Clear Lipid-exchanged Anatomically Rigid Imaging/immunostaining compatible Tissue hYdrogel).

They initially studied mouse brains.

One of the first human brains they studied belonged to an autistic individual.  They found a neuron that apparently looped back onto itself rather than communicating with adjoining cells.  Also neurons in the frontal lobe of this individual  revealing "ladder-like" patterns in the neurons.  They stated this was similar to a finding in Down's syndrome.  This is in spite of the fact that in my reading of some stuff by Dr. Manuel Casanova, Down's syndrome brains are much smaller than normal and autistic brains are initially larger, undergoing an abnormal period of growth during a child's initial development and then tapering off.

I don't have the times article online handy, but another articlesummarizes this research well.

Dr. Deisseroth seemed to think it was not unquestionable that this finding could be key in understanding the etiology of autism, though I'm skeptical myself.

Prior to this, brains were sliced into small millimeter segments.  It was difficult to see how various cells or circuits connected to each other.  Also, the tissue could not be used for subsequent experiments.   This new technique may help resolve these problems. 

I'd also be interested in knowing what glial cell abnormalities they might find in autistic individuals since scientists have begun to recognize the importance of glia.  Previously, they were just thought to provide supporting functions to neurons. 

Here's hoping that this technique will help revolutionize our understanding of the etiology of autism so that we know what causes it and make it more likely a cure will be found at some point in time. 

Sunday, March 31, 2013

free download of my novel 4/1-4/5

They say that the best things in life aren't free.  Well maybe my novel, "The Mu Rhythm Bluff" isn't the best thing in life, but it's going to be free.  At least between April 1 and April 5.  It's my own way of kicking off autism awareness month.  I won't be able to offer it free again until July I don't think, the way that Amazon works.    Of course normally it's less than three dollars so it's still a bargain.  Not easy to sell ebooks as I'm beginning to find out.  Let's see if I can give at least a few copies away.  Again, here's the link to the novel in case anyone's interested: link here for free download from April 1 to April 5.

Monday, March 25, 2013

has autism speaks hired its first autistic employee?

For a long time now, I've complained about the fact that autism speaks advocates that businesses hire autistics, but as far as I've known, has never hired an autistic person as a paid employee to work in their organization.  It would appear that this has recently changed.  I must say, if Kerry Magro is a paid employee in their organization, I'm gratified.

His official title is "Social Marketing Coordinator".  I'm trying to figure out what a social marketing coordinator does.  Mr. Magro, in the post, is quite vague about what his job entails.  I'm rather curious.

Magro is an individual I'm already somewhat familiar with as he has posted not infrequently on autism speaks' web pages and blogs.  He's been described as an "autism speaks staffer", though it was unclear to me just what specifically his position was with autism speaks, what he did for them besides write a few blog posts and whether this was a paid position or not.  A couple of years ago I wrote a previous blog post where I took Mr. Magro to task for recommending there be affirmative action for autistics in the workplace and autism speaks publishing this on their blog when they had apparently never hired an autistic employee.

The post states that Magro was involved in some sort of employment think tank that autism speaks was conducting.  I have to wonder about the credibility of someone quite young, barely out of college, who as far as I could tell  has never worked before, being included in an endeavor like this.  Though Kerry has some unique qualifications that others in the think tank probably don't have, i.e. being on the spectrum himself, I have to wonder about a program that includes the input of someone with so little experience in the actual workplace.  I have to wonder what this program is like, what the other people's qualifications may have been.   

I'm glad now that AS is starting to practice what they preach and giving an individual with autism (albeit an extremely high functioning one) a chance at a mainstream job.  I hope this works out for Kerry Magro and he can perhaps be a credit and an asset to an organization marred with all sorts of problems, which, at least in my opinion so far, has not been very helpful to persons with autism.

However, Magro is highly functioning and educated, in the process of obtaining a masters degree.  What of persons (probably myself included) who don't function at Magro's level?  Will autism speaks offer them employment in less executive type jobs (I'm assuming a social marketing coordinator is a more executive job, though I have no idea what this position entails as I've said before) such as data entry or even filing or janitorial work.  Perhaps now that AS has become enlightened enough to hire one autistic person, perhaps they could hire some others.  Of course, perhaps hiring a less functional autistic as a janitor might be considered bad publicity and this apparent sock puppet of the ND movement might be worried about flack they would get from ND's who might take umbrage at any autistic working a menial job.   

I see that AS has a new employment tool kit coming out soon.  I await this with bated breath.

Again, I wish Magro luck in his new position (whatever it is) and I hope AS will hire other paid employees on the spectrum.

As a side note to this post, I hope you can read it as the logo for my new novel may be getting in the way.  I apologize to any readers of autism's gadfly for any inconvenience this might cause, but I don't know how to make it smaller or position it in a place more suitable and I still want to promote my novel. 

Wednesday, March 20, 2013

The Mu Rhythm Bluff, a novel by Jonathan Mitchell

As regular readers of my blog know, I've been talking about it for quite some time.  I was working on self-publishing my novel "The Mu Rhythm Bluff".  By clicking on this link, you can go to Amazon and read the first few chapters for free.  If you're interested and you have a Kindle, you can purchase it for less than $3.00.  You can also check out the artwork by my talented cover artist, Liz Ingersoll.  I'm not sure if she has a web site that I can link to in case you want to hire her for a project, but if I find out about one if she gives my consent to give her business a plug, I'll do so and edit this post. 

Some people are lucky at cards, others are lucky at love.  Drake Dumas is neither.  He loves to play poker, though he nearly always loses.  He's 49 years old and still a virgin.  He either can't get up the nerve to ask women out or he's constantly rejected due to his behavior.

After losing his job, incurring gambling debts and having to move back in with his parents, he hears of an experimental treatment involving suppression of brain waves called Mu rhythms.  Also, transcranial magnetic stimulation which can be used to enhance or inhibit the brain.

Instead of mitigating his autism, it appears to turn him into an expert poker player, unbeatable by even world class players.  When word gets around of his poker prowess, his luck with women seems to change.  However, the old French proverb lucky at cards, unlucky at love does seem to ring true for Drake.  He only seems to have his poker prowess when he's celibate and not involved with a woman.  When he loses the girl, the poker skills return.

He must get to the bottom of this and find a way to permanently keep his skills.  His situation is also complicated by a beguiling reporter who writes an article trivializing his disability and won't seem to leave him alone.  Will she cause danger for Drake?

In the process Drake may learn some things about himself, his autism and love.

As some already know, this is not my first novel.  I have also written several short stories, 14 of them are on my web page which you can check out.  My first novel, "The School of Hard Knocks" was about the experiences of a young autistic boy in an abusive special education school.  I was not able to get it published and I probably won't bother publishing it on Kindle Direct Publishing without some serious revision, which I may or may not do at some point.

I believe my second novel is closer to publishable quality but may still not be there.  However, I don't know how I can make it better and don't have thousands of bucks to pay a book doctor or editor, who may not even be helpful.  So, here it is, ready or not.  I was able to read "The School of Hard Knocks" on a national radio program, so maybe I can repeat that with this one and sell a few more copies.  I submitted an earlier version and have sold two copies as of this writing.  It had a few problems, so I resubmitted it.  I apologize to those who bought the first two copies and I notified amazon and hopefully whoever you are, you can get the updated copy without additional charge or problems.

Now, I have to work on getting a side bar in the artwork and a link, hopefully I'll be able to do this.

I know everyone is enthralled with the 1 in 50 story (which I may write about in a subsequent post), but maybe you can take a break from that, and check out my novel. 

Again if the concept of this novel appeals to you or you've just been a reader of my blog and want to help me out, buy the book and help me out. Thanks in advance to anyone who does so.

Friday, February 15, 2013

Does neurodiversity help teach special ed students

I've just read an interesting piece by Dr. Thomas Armstrong, a former special education teacher and now, I believe a clinical psychologist, endorsing the neurodiversity model as a solution to the problems of special education students.  Dr. Armstrong a couple years ago or so, wrote a book about neurodiversity.  I've written a take on Dr. Armstrong's book in a previous post.

Journalist Steve Silberman, whom I'm now following on twitter, was nice enough to give this article a shout out.  Mr. Silberman, for the past few years, has been writing another book about neurodiversity which I'm waiting to read with bated breath.  Originally publication was slated for 2013, but I guess Silberman wants to take his time to write the book or for some other reason, the publication date has been moved up to 2014 :(.

Dr. Armstrong seems to believe that the deficit model of special education does not help students.  He takes umbrage at terms like "moron", "learning disability", etc.  Though the word moron's meaning has changed in recent years to insult people, at one time it was a classification for persons with severe retardation which was a non-offensive part of nomenclature.

He talks of a variety of studies that he intimates would help special ed students such as Baron-Cohen's work with extremely high functioning persons with autism.  Yet in the same vein, uses classifications of persons with serious mental retardation.  He cites work showing creativity in persons with bipolar disorders as well.

Armstrong seems long on superficial general examples but rather short on specific suggestions on how this can help educate special education students or the benefits they can accrue from taking this approach.  In his article, he does not cite a single example of a student who has benefited from this approach or how they were benefited.

Dr. Armstrong, unlike Ari Ne'eman, seems to acknowledge that those with a neurodiversity perspective do not seem to think of autism as a disability he writes:

 The concept is neurodiversity. The term, which was coined by Australian autism-activist Judy Singer and American journalist Harvey Blume in the late 1990s, suggests that what we've called in the past "disabilities" ought to be described instead as "differences" or "diversities." Proponents of neurodiversity encourage us to apply the same attitudes that we have about biodiversity and cultural diversity to an understanding of how different brains are wired.

I must commend Dr. Armstrong for his honesty in telling us what neurodiversity really means, rather than the usual strawman arguments I hear that because I don't like neurodiversity that I'm opposed to human rights for disabled or "differently abled" persons.

I tweeted back to Silberman that I doubted that he or Dr. Armstrong had ever spent a day of their lives as special ed students, as opposed to the eight years of my life which I was in private special ed schools in the pre IDEA days.  Though I realize Dr. Armstrong at one time was a special ed teacher (rather than a journalist like Silberman), I still question how much he really knows about the perspective of the special ed students.

I'm still waiting for Dr. Armstrong to give a specific example of a person who was helped by his approach.  He failed to do so in his book.  I wrote a pretty extensive comment on his book not long after it was published that I linked to above and the interested reader can check that out.  I was disappointed that Dr. Armstrong still fails to do so in this article.

Again, I take umbrage to Armstrong's comparison of peta lillys or people from Holland not living at a high altitude and comparing this with the struggles that those of us with disabilities have to go through every day.

He unfortunately mentions Ari Ne'eman in his article.  Though Ne'eman was not as honest as he was when he denied that he had ever stated that autism was a disability and then tried to cover up his belief when I provided documentation to the contrary on this blog.

I also wonder about Silberman's point of view as he told me when I first wrote to him about his planned book that he did not plan to trivialize the devastation that autism causes to some.  This would seem evidence to the contrary.

I guess I'll just have to be patient until Silberman publishes his book, so I can give my take on autism's gadfly, which I'm still anticipating.   

Addendum:  Silberman has now blocked me on twitter, just for politely disagreeing with him and judging his and Dr. Armstrong's ability to assess the needs of special education students because they themselves were never special ed students.  Someone else on twitter called my account there a "troll account".  Yet more examples of how much neurodiversity loves to dish it out, but can't even take the most polite criticism. 

Wednesday, February 13, 2013

I'm contemplating self-publishing my novel

Off and on over the past three or four years, I've been writing (and rewriting) a novel about an autistic poker player.  It has a beginning and a middle or an end, so technically I could say it's finished and ready to be self-published. But I'm not sure. This is my second more or less completed novel.  My first novel dealt with the autobiographically inspired adventures of a young autistic boy in a special education school and his mother's attempts to garner him the best help and services based on having to go through the rigmarole of getting the best stuff possible included in his IEP and having to go through the ins and outs of the Individuals with Disabilities Education Act.  I've flogged that first novel and given up on having it published or self-published, but more on that later.

Now that I'm contemplating self-publishing the second novel, I've been looking over the Amazon-owned website, create space, which helps in self-publication for supposedly affordable amounts of money.  It was hard for me to understand the ins and outs of their webpage.  They charge $65.00 just for helping you format and upload the novel to Kindle Direct Publishing.  I was rather stunned when I was told you could just log onto Amazon's self-publishing website and do it yourself for free.  A friend from the internet writer's workshop I've participated in said he'd help me do it.  I also bought a new kindle recently and have purchased a few ebooks to get used to the idea of maybe having an ebook of my own and the concept in general.  Until recently hard copy books worked well for me and I saw no need to purchase a kindle.  Changing with the times seemed necessary.  I've now downloaded the instructions on how to do it on my kindle, so I might be able to do it myself.  If not, hopefully my internet pen pal can assist me and I won't have to cough up $65.

Cover art is most likely another necessity in the endeavor.  I think create space charges about $365 for that.  I have a friend (or friendly acquaintance) who's a professional author and illustrator of children's books.  I asked her if she could do it for about two hundred bucks.  She said she normally charges $10,000 for cover art, but because I was a friend she'd do it for $200.  Then, she apparently was going through a rough patch in her life or was busy with over more lucrative projects, she couldn't do it.  It looks like I've found someone else who's a talented artist, and with luck, she'll do it for me for $200.  So, if I can get those two items taken care of, perhaps I'll have a self-published novel that anyone who cares to spend a few bucks can download onto their kindle.

Then there's the problem with mass marketing and promotion which costs a pretty penny.  Create Space seems to provide assistance in this area also, but hardly at a cost which I can afford.  Interestingly, I've now been able to get airtime on NPR twice and another NPR show was interested in doing a show on yours truly, but that fell through.  More on that later.  The first of the two shows dealt with my first novel.  There are a lot of published novelists who would love to get on an NPR show and can't, so perhaps I have a good media gimmick to help sell books.  But is that really enough or is there more to the story?

To date, like just about everything else in my life, my writing career (for want of a better word) has not been propitious.  I realize I've written about this on other blog posts, but I see nothing wrong with a recap.  I first attempted to write a novel at age 14.  Writing a novel would seem to be quite an undertaking for even a typical 14 year old.  However, I was autistic and at the time had had essentially no mainstream education, having attended special schools my entire life.  At 14, I was mainstreamed in eighth grade (one level below my chronologically-aged peers) and I began writing this novel.  My lack of concentration, urge to twiddle (self-stimulate) and inability to be organized prevented me from finishing this project.  A few other scattered attempts at novel writing in my teens produced the same result.  At 19, I started college and was very busy with that and didn't write for many years.  However, the pipe dreams of glory never stopped and I often fantasized about being a commercially successful novelist. 

In the 1990s, a few years after I first became Eric Courchesne's research subject I decided a nonfiction piece might be easier to write than a whole book, fiction or nonfiction.  In those days, his findings of a smaller cerebellar vermis in some persons with autism was getting some media traction.  I wrote a nonfiction article about my being a research subject for him which was rejected by a number of magazines.  My most avid fans know that I've self published this article on my stories web page.  I never dreamed that nearly two decades later it would result in an interview that would be broadcast on NPR.

It was not enough, I also wanted to write fiction.  At this time, I became friends with a schizophrenic individual who was a prolific writer of short stories.  He suggested that instead of a novel, I try my hand at a short story or two as that might be easier than a novel since you don't have to put in the sustained effort that a much longer work would entail.  It turned out he was right and I was able to write 16 short stories, most of them inspired by my experiences and angst as an autistic individual.

I submitted them to magazines and the inevitable rejections kept pouring in.  However, I got some encouragement.  Glimmer Train stories, a very prestigious short story magazine wrote on my rejection slip for one story, 'quite a moving piece, enjoyed it'.

I still yearned to write a novel and finally in about the year 2000 began "The School of Hard Knocks" which I wrote about above.  I took a private writing class and met another member of the class, Tamar Brott, a freelance journalist who had done stories for the NPR shows This American Life and Studio 360.  She took an interest in my work.  The statement that piqued her the most was my wanting to use my autism as a gimmick in order to get the novel published and a best seller and find a girlfriend.  She pitched the idea to Ira Glass and the rest of the This American Life crew and they loved it and were interested in having a story about me broadcast on their NPR show.  I hoped that this would result in publication of my novel.  At the 11th hour This American Life decided not to run the story because they felt that Tamar had given too much of a negative perspective on it.

I started submitting the novel to literary agents.  The fourth agent  whom I queried with said she was interested in reading the first 100 pages and did not want me to submit to anyone else until she had read them.  She wrote me a note saying that although she was interested in the character's story and personally interested in my background as an individual with autism that after having read the sample pages she did not believe she could find a publisher for me, but suggested I might consider hiring a professional writer to help polish it.

I took the suggestion and a couple of individuals stated that there was so much wrong with the novel that I would have to write it over from scratch.  At this point I had been rejected by eight agents and gave up.

After the fiasco with This American Life, Tamar pitched the idea of my novel to the show Studio 360, a smaller NPR show, but a national show dealing with the arts and one who a number of prestigious and published authors have appeared on.  I can't help wondering if I'm the only person in history who had one book doctor tell me it was a waste of time to edit my novel and then a month after that read from my novel on a national radio show and was unable to get it published.  Even the title was a ghastly cliche and I couldn't think of a better one (I still can't).  I submitted it to two more agents and my rejections totaled ten. 

Discouraged, I turned my efforts to nonfiction and wrote a short book about my take on various things concerning autism.  It was sort of a rough effort and I did not bother submitting the book anyplace.  I did, however, self-publish one of the book's ten chapters on my website, an essay questioning the posthumous autism diagnoses of Albert Einstein, Thomas Jefferson and Bill Gates.

I tried writing another novel but was not able to get very far into it.  Then the idea of a novel about an autistic poker player came to me.  I tried writing this novel off and on, but it took a few years to finish even a first draft.  It clearly needed work and I took some writing courses, had one book doctor look over part of it and became a member of the internet writer's workshop for guidance.  I got some good help there, but it probably still isn't ready for prime time.  I' m not sure I care.  I think it's a good story and I want it to be heard so I may take a chance and self publish it.  Will this be a mistake?  I don't know.  Am I committing literary suicide by writing this blog post?  I don't know.  Will I only sell a few copies on Amazon and look forward to some one star reviews?  Another question mark.  Will I be able to get the cover art done and either figure out or get help in self publishing it successfully?  Even that is a mystery. 

All I can say are a couple of other cliches Stay tuned.  To be continued.......