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. 

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. 

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. 

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.

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.  

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. 

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.