"Professor" John Elder Robison's Limited Understanding of Autism and Autism Research

MIT Technology Review:  John Elder Robison is a professor at the 

College of William & Mary and the author of Look Me in the Eye.

John Elder Robison is a former "free ranging "Aspie", a successful businessman, writer and now apparently a professor as indicated in the MIT Technology Review article Fixing Autism Research We need to come to grips with what autism really is.  I met Mr Robison briefly at the IMFAR conference in Toronto a couple of years ago. It is not clear in what sense he suffers from a DSM5 ASD clinically significant  functioning impairment (mandatory criterion D) in relation to his "autism" symptoms so as to qualify for an autism spectrum disorder diagnosis but he has embraced the autism label nonetheless and presents himself as a voice for the "autism' community.  John Elder Robison may well be a voice for the extremely high functioning "autism" community but he certainly does not speak for my adult son who suffers, and I use the word "suffers" intentionally, from his severe autism disorder.  Nor do Robison's comments indicate in any meaningful sense that the understands what autism is in a general sense.

My adult son with severe autism disorder like many with autism disorders also have an Intellectual Disability diagnosis and suffers from seizures.  In recent years the CDC has estimated between 41-44% of persons with autism disorder also have an ID.  The WHO estimated that 50% with an ASD also suffer from ID. Many also suffer from epileptic seizures.  The estimates in that regard  vary widely but 30% is a number often cited with an even higher number of that percentage located among the severely autistic end of the spectrum. 

Like many with ASD, ID and epilepsy my son suffers meltdowns, self injurious behavior, reactive aggression, sensory issues and extreme obsessive behaviors.  Changes of any kind can be very challenging. His health is affected in many negative ways by his limited communication abiliity of any kind and no computers do not reveal an inner intelligence which he can communicate via keyboard.

Professor J E Robison complains that autism is not a disease.  I assume he means that autism is not contagious and I am sure the world appreciates that insight.  It is recognized medically as a neurological DISORDER. More recently well informed autism experts like Lynn Waterhouse have acknowledged that autism is very heterogeneous in nature and may better be viewed from a symptom perspective rather than as a uniform disorder.  Many parents of children with severe autism including me have long complained when extremely high functioning persons like JE Robison present themselves as autism experts and present a view of autism to the world based on their considerable abilities and gifts.

"Professor" Robison's life experience as an extremely high functioning free ranging Aspie gives him no  insight into severe autism disorders and the potential benefit down the road, admittedly far down the road,  for persons with severe autism,   It would be nice if the good professor Robison would wake up some day and realize the harm he is doing to people like my son by his misrepresentations of what autism means,  I am not however holding my breath waiting.  

DSM5 ASD Criterion D: No Clinically Signifcant Impairment in Current Functioning = No Autism

The DSM5 is certainly open to criticism; particularly in its combining of the pervasive developmental disorders into one Autism Spectrum Disorder ignoring the very large numbers of persons with DSM-IV Autistic Disorder who also suffer from Intellectual Disability.  One point which did make sense in the Autism Spectrum Disorder diagnostic criteria though is the one that is routinely ignored by those who glorify autism disorders ... Criterion D (underlining added):

Diagnostic Criteria for 299.00 Autism Spectrum Disorder

D.Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

The subscribers to the irrational view that autism disorder, a mental health disorder diagnosis, is not really a disorder after all are able to maintain their beliefs by ignoring reality particularly the realities faced by those with severe autism disorders.  They routinely claim every historical genius or artistic talent as an "autistic".  They argue for the purity of the autism spectrumm "condition" by pretending there intellectual disability is just a coincidence and has nothing to do with autism.  In that regard of course they are on the same page as the professionals who separate ID and ASD and call them comorbid conditions.  They fall off that page though and put distance between themselves and the autism health care professionals by ignoring the plain wording of the DSM5 ASD Criterion D.  

Unfortunately a Jerry Seinfeld has only to speak and his words are heard and debated around the world. JS "migh be autistic" and that is good enough for those who want to put distance between themselves, or their family members, and the intellectually disabled and impaired in their everyday life activities at the severe end of the spectrum were autism is exactly what it has always been ...  a disorder.

Very high functioning persons claiming to be autistic must be able to demonstrate, as stated in DSM5 299.00 Autism Spectrum Disorder  that the DSM5  autism symptoms cause  .... . clinically significant impairment in current functioning.  Otherwise they should not receive an ASD Autism Spectrum Disorder diagnosis and should not claim to be autistic. 

Conor's 3rd Tonic Clonic (Grand Mal) Seizure

Two and a half hours ago Conor suffered his 3rd Tonic Clonic or Grand Mal seizure.  (A Year ago he also suffered an episode of rhabdomyolisis, a serious adverse reaction to his previous seizure medication).  On the previous 2 seizures Conor was in a room by himself when they started, this time he was with me in the living room after we had returned, together with his mother, from a trip to the Superstore.  I sat down in a chair in the living room and Conor came in and fell backwards like a tree falling in the woods.  Fortunately he fell into a soft, well cushioned chair and did not hit his head on anything hard or sharp. I thought at first he was joking but then I saw that the cheese which he had sought out at the Superstore had been flung across the room. I noticed then things were not right.  

His mom was home and together we moved him to the floor on his side with a soft pillow under his head.  When he spewed up fluid it went on to the pillow and a rolled up blanket we had also put under his head.  His body went into convulsions and he was unconscious for a period of 3-4 minutes.  We called 911 and they sent the emergency response team (thank you again 911 and EMT responders) and they measured his body temperature, took his blood pressure and heart beat and observed him for a period of time before agreeing that he could stay home wihout an emergency room visit this time.  They gave us signs of things to look for and be concerned about.  Conor has recovered more quickly this time than on previous occasions and he has been bouncing off the floor as always (and playing on Dad's computer). 

Seizures are more common in persons with autism than in the general population and even more common if the autistic person, like my son, also suffers from an intellectual disability.  This is stuff you don't hear often from those persons, high functioning autistics or their family members, who fight against the rights of people like my son to have a cure, who fight to prevent research into causes and treatments of autism and other neurological disorders including seizure disorders.

To those people I say you have no right to fight against cure oriented research.  If you are fortunate enough that your alleged autism is not a disorder from which you suffer, enjoy your business successes and your literary and lecturing careers and stop oppressing my son and others like him who actually suffer from autism disorders and the other cognitive, neurological and other disorders that so often accompany them. 

I am tired of listening to your complaining while my son suffers.

For those who suffer from autism and seizures or those who care for them the US NIH, through its MedlinePlus service provides the following information about tonic clonic seizures:

Generalized tonic-clonic seizure

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Generalized tonic-clonic seizure is one type of seizure that involves the entire body. It is also called grand mal seizure. The terms seizure, convulsion, or epilepsy are most often associated with generalized tonic-clonic seizures.

Causes

Generalized tonic-clonic seizures may occur in people of any age. They can occur once (single episode). Or they can occur as part of a repeated, chronic illness (epilepsy). Some seizures are due to psychological problems (psychogenic).

Symptoms

Many persons with generalized tonic-clonic seizures have vision, taste, smell, or sensory changes, hallucinations, or dizziness before the seizure. This is called an aura.

The seizures usually result in rigid muscles. This is followed by violent muscle contractions andloss of alertness (consciousness). Other symptoms that occur during the seizure may include:

• Biting the cheek or tongue
• Clenched teeth or jaw
• Loss of urine or stool control (incontinence)
• Stopped breathing or difficulty breathing
• Blue skin color

After the seizure, the person may have:

• Confusion
• Drowsiness or sleepiness that lasts for 1 hour or longer
• Loss of memory (amnesia) about the seizure episode
• Headache
• Weakness of one side of the body for a few minutes to a few hours following seizure (called Todd paralysis)

Exams and Tests

The doctor will perform a physical exam. This will include a detailed look at the brain and nervous system.

An EEG (electroencephalogram) will be done to check the electrical activity in the brain. People with seizures often have abnormal electrical activity seen on this test. In some cases, the test shows the area in the brain where the seizures start. The brain may appear normal after a seizure or between seizures.

Blood tests may also be ordered to check for other health problems that may be causing the seizures.

Head CT or MRI scan may be done to find the cause and location of the problem in the brain.

Treatment

Treatment for tonic-clonic seizures includes medications, changes in lifestyle for adults andchildren, such as activity and diet, and sometimes surgery. Your doctor can tell you more about these options.

Alternative Names

Seizure - tonic-clonic; Seizure - grand mal; Grand mal seizure; Seizure - generalized

Joel Rubinoff's Angry, Ill Informed, Misleading Autism Rhetoric

Conor Doherty on World Autism Awareness Day 2014,  as I tried to take a "selfie" of the two of us wearing blue, gave his old Dad an unexpected hug. 

As in this pic, Conor brings us great joy but his autism is a disorder 

which restricts his life and causes him harm. 

Joel Rubinoff father of a high functioning, smart autistic son is angry  and he is using his position as an arts and entertainment columnist to tell Canadians that parents and organizations who disagree with his feel good views of autism need "attitude adjustments".  In Joel Rubinoff's ill informed view of autism  people should not discuss autism like it is a ... disorder.  They should not talk about any of the serious, sometimes harmful, sometimes deadly deficits that actually restrict the lives of many with autism disorders, a group of neurological disorders marked by heterogeneity, complexity and variation. (See for example, Lynn Waterhouse, Rethinking Autism: Variation and Complexity). 

Autism for Joel Rubinoff is Temple Grandin, Darryl Hannah, Einstein, Mozart, Bill Gates and Susan Boyle.  Forget for the moment that Einstein and Mozart lived and died before autism was a recognized disorder and that any speculation that they were autistic is exactly that ... speculation.  Rubinoff, like any of the autism is beautiful crowd that have fought against recognizing the harsher realities faced by many on the autism spectrum of disorders, likes to equate his son's autism with very smart, talented people.  Rubinoff's son is, by Rubinoff's evidence, very intelligent and  high functioning with good communication skills:

"But did you know that half way through senior kindergarten, he's already learning to read. That he can do puzzles with almost 100 pieces. That he's fascinated with space and science, and can name all the planets. That if you tell him it's Hot Dog Day at school he'll squeal with delight. "I'm so excited, Dad — I can't wait!"

Joel Rubinoff's son, like some on the high functioning end of the autism spectrum of disorders is very intelligent.  I am happy for him and his son.  My son, now 18 lives on the severe end of the autism spectrum of disorders.  He has an intellectual disability and suffers from seizures, like many on that severe end of the autism spectrum.  My son brings us, and everyone who has worked with him, great joy but his disorder limits his life severely in the ways described by the autism advocates that Rubinoff despises. 

Mr. Rubinoff appears to be unaware of sources like the World Health Organization which, in September 2013,  stated that approximately 50% of persons with an autism disorder also have an intellectual disability. Joel Rubinoff may not realize that many autistic children are prone to wandering and some lose their lives as a result. Some engage in very serious self injurious behavior as my son has done at times. 

If Mr. Rubinoff doubts what I am saying I would be happy to take the time to provide him with sources pointing to the very harsh realities facing many on the autism spectrum of disorders ... if he would start acting like a reporter/journalist and read and report to Canadians that autism is far from being about undiagnosed historical geniuses.  Nor is it only about actually diagnosed, highly intelligent children like his son.  For many including my son Conor Doherty, autism is a complex, serious disorder.  I love my son dearly and I know, contrary to Mr Rubinoff's "reporting" that my son's life is very restricted  and his future as an adult whose parents will not always be with him is very bleak. 

(For Mr. Rubinoff's benefit I am the father of a severely autistic son and I have been involved in autism advocacy for 15 years in New Brunswick where, together with fellow parent advocates, we were able to establish a model early intervention for autism program, obtain some autism educated Education Aides and Resource Teachers, and successfully fight the closure of the Stan Cassidy Centre Autism Team which treats and helps many children and young people with serious autism disorder issues, the kind of issues Mr Rubinoff appears to be unaware of.)

We Must Face Reality: Autism Disorders Can Be Harmful, Even Deadly

After discovering an arm, torso and legs Thursday, police continue the search for human remains along a rocky shoreline in Queens, Friday, Jan. 17, 2014. The remains belong to 14-year-old Avonte Oquendo, officials confirmed Tuesday. (AP Photo/Jason DeCrow) 

Neurodiversity cult members, including some autism professionals, academics and neuroscience students like to scream at parents and other family members who speak honestly about the dangers and deficits endured by children and adults who actually suffer from autism disorders.  Television, movies, and the mass media generally, love to provide a Big Bang picture of autism as persons with unique personalities and special gifts and extraordinary intelligence.  There is little appetite for, and as a result, less public awareness of,  honest, reality based discussions of the harm and dangers posed by severe autism disorders.   Lack of public understanding of the dangers posed by autism disorders may or may not have been a factor contributing to the departure, and now confirmed death of New York autistic youth Avonte but it certainly didn't help.  The Neurodiversity cult members who constantly fight to hide the dangerous realities posed by autism disorders may not be responsible in this specific case for what has occurred but they have not helped with their constant misinformation campaign, their constant suppression of the truth about autism disorders, the harm they can cause and the dangers they can pose to many with autism disorders.

As a father I was at fault several years ago, when my severely autistic son was younger, of not keeping a close enough watch on him when I took a business call on a Saturday afternoon.  For my son, and for me, it ended well when a good Fredericton man stopped his vehicle to remove my son from the busy traffic that he was facing crossing a local street, unaware of his danger, and took him to a convenience store where he called the police at 911.  I was able on the conclusion of my business call to find and recover him quickly once I too called 911.  Sadly, Avonte the autistic New York youth has now been confirmed to be dead 3 months after he simply left his school after walking past security. 

I am NOT suggesting that greater awareness of the very real dangers posed by autism would, or would not, have helped in Avonte's case.  In my son's case our school has been made clear, and the school has agreed, that our son requires, for his own safety,  24 hour  adult supervision which he also receives at home. Greater public awareness of the very real dangers posed by autism disorders must be undertaken now in order to reduce the likelihood of future deaths of autistic persons who wander from homes and schools. It is long past time to be honest about the harm and dangers posed by autism disorders.  My son and others with severe autism disorders depend on all of us being honest about the realities and dangers they face.

Autism Parents Are Not Unbreakable

  

The allegedly UNBREAKABLE blade of my window ice scraper snapped off under the strain of several days of heavy ice scraping in this December's cold and snowy Canadian winter weather. In fairness to the manufacturers and distributors of the "Unbreakable" ice scraper blade I have used it well past the 3 year limited warranty and it has seen lots of use in previous Canuck winters. People, including parents of severely autistic children, can also break particularly if they face other socio-economic and/or family and health challenges.

Not all parents break in the face of the challenges and fears that haunt many parents of severely autistic children but some do.  All of us know that it is highly unlikely that anyone will provide our autistic children with the love and care, the security and the enjoyment of life, that we have provided our children.  Some of us, not all, but some of us, break under the pressures of those facts.  Some parents rather than leave their children to a world that they know will not care for them kill their own children and take, or attempt to take, their own lives.

The world of "autism" awareness is  cursed by a group of fellow parents that attacks these parents for any effort to treat their own children, who do nothing to help those parents and their children in any meaningful way. They most assuredly will not provide any meaningful assistance to the children whose parents they condemn for trying to end their existence to prevent their adult autistic children from suffering lives on streets, hospital wards, jails and mental health institutions. They do not realize that those parents are broken, just broken, by the realities they and their children face and the children will face after their parents are gone. Yes, they are broken by the realities their children will face after they are gone; NOT by people talking about those realities as some erroneously claim.

These alleged thinking persons who purport to offer guides to autism and who attack all parents who do not drink from their "autism is a gift kool-aid" do nothing because they too are broken, their common sense is broken, their ability to see autism realistically is broken, shattered under the weight of their irrational belief system.

We are all people. Ultimately our bodies outlast our limited time warranties. None of us can  dare  claim we are unbreakable.  The alleged thinking persons would do well to remember that reality as 2013 slips away and their own children age and move closer to their own very uncertain futures.    

Gene-Environment Autism Disorder Research CHARGEs Ahead With New Air Pollution Study

The belief that autism is 100% genetics has always seemed to me to be nothing more than that ... a belief ... a non-evidence based ... unscientific belief. But what do I know? I'm not a scientist, just a parent with a keen interest in autism disorders.  I was privileged to attend, courtesy of an invitation from Autism Speaks Canada, the IMFAR 2012 conference in Toronto but was disappointed, with respect to autism cause research,  that most of the environment oriented autism research was consigned to the "boards" posted outside of the main presentation rooms.  Very little that I could find was actually featured about environmental autism research.  To the best of my knowledge genetics autism research continues to receive the overwhelming share of autism research dollars and media attention. I am happy to see that a new gene-environment interaction autism study has been completed,  and is gathering some attention, a study  by first author Heather E. Volk, Ph.D., M.P.H., assistant professor of research in preventive medicine and pediatrics at the Keck School of Medicine of USC and principal investigator at The Saban Research Institute of Children's Hospital Los Angeles and senior author Daniel B. Campbell, Ph.D., assistant professor of psychiatry and the behavioral sciences at the Keck School of Medicine of USC :

"Autism spectrum disorder: Interaction of air pollution with the MET receptor tyrosine kinase gene," online ahead of the January 2014 edition of Epidemiology.

The abstract concludes that "MET rs1858830 CC genotype and air pollutant exposure may interact to increase the risk of autism spectrum disorder." On the Science Codex site the article Air pollution and genetics combine to increase risk for autism provides a report and summary I can digest and highlights the significance of the study:

"Although gene-environment interactions are widely believed to contribute to autism risk, this is the first demonstration of a specific interaction between a well-established genetic risk factor and an environmental factor that independently contribute to autism risk," said Daniel B. Campbell, Ph.D., assistant professor of psychiatry and the behavioral sciences at the Keck School of Medicine of USC and the study's senior author. "The MET gene variant has been associated with autism in multiple studies, controls expression of MET protein in both the brain and the immune system, and predicts altered brain structure and function. It will be important to replicate this finding and to determine the mechanisms by which these genetic and environmental factors interact to increase the risk for autism."

The Science Code article points out that the Campbell/Volk team studied 408 children between 2 and 5 years of age from the Childhood Autism Risks From Genetics and the Environment Study which is described at its home page on the UCDavis web site:

"CHARGE (Childhood Autism Risks from Genetics and the Environment) was launched in 2003 as the first comprehensive study of environmental causes and risk factors for autism and developmental delay. The CHARGE study recognizes that no single factor accounts for all autism cases, nor is there one event or exposure that can be responsible for the rapid increase in diagnoses over the last few decades. Instead, each child’s path to altered brain development may be different."

With all the recent, angry, irrational attacks on Autism Speaks by Neurodiversity cultists it is worth pointing out that Autism Speaks is one of the sponsors of the CHARGE study which the Campbell/Volk study team used for its research data.

The study authors point to the need for more studies replicating their results.  Hopefully more such gene-environment autism research can be conducted.

Autism Speaks Betrays Children, Adults With Severe Autism Disorders: Autism Speaks Blogger Calls Autism A Blessing

UPDATE NOTICE: Since this comment was published Autism Speaks has changed the title of the article I complained of from "Autism Diagnosis Is A Blessing In Disguise"     to   "Autism Diagnosis: An Unexpected Journey". Apparently the mother of a boy with autism who authored the blog comment in question also objected to the original title which was a creation of an Autism Speaks officer and done without her participation.  Nice to see that Autism Speaks will listen to some parents of autistic children even if they do still ignore persons with autism and intellectual disability,, their parents and family members, and the challenges they face together. (Thank you to Dasa Lessard for the UPDATE  Information)

Since my 17 year old son was diagnosed with autistic disorder and profound developmental delays (and more recently, like many who share those conditions, with epileptic seizures) little has been done to advance our knowledge of causes, to find treatments or cures for autism disorders.  In terms of our understanding of autism we have largely regressed in public understanding of autism disorders. 

There are some who talk about autism realistically but there are many who have adopted the perspective of some with very high functioning autism that autism is not a disorder after all.  It is very disheartening to see that Autism Speaks which has been dancing a long slow dance with the autism is a blessing Neurodiversity ideology has now fully consummated the relationship. You can read it for yourself on the Autism Speaks blog page under the title:  Autism Diagnosis Is A Blessing In Disguise written by a mother of a boy with high functioning autism. 

Autism Speaks has betrayed those with severe autism disorders and their families. 

What Happens To Our Children When We Die? Maine Man Killed Himself and Adult Autistic Son in 2010

"Ginger Taylor  commented on the pressures on families with autism and on the greatest fear of many parents of autistic children: "That is the big question -- what happens to our child when we die. .... We understand their needs better than anyone else. It really breaks my heart hearing what happened to this family. It shouldn't be like that.""

The Portland Press Herald , April 28, 2010

The recent murder and attempted murder/suicide cases involving mothers and their children with severe autism disorders are not the first such tragedies to occur.  Unfortunately the same patterns are unfolding ... the refusal to seriously address the need for decent, humane residential care and treatment facilities for adults with severe autism disorders continues,  the attempts by the TPGA and other ND groups like the ASAN corporation to suppress any discussion of the harsh realities of severe autism disorders and the effects on those who suffer from them and their families are continuing.  No one is speaking about what has to be done to help the severely autistic live a decent life for fear of being subjected to irrational accusations that to do so is akin to excusing or justifying the killings.  David H. Gorski, TPGA ideologues Emily Willingham, Shannon des Roches Rosa, ASAN corporation's Ari Ne'eman and blogger Matt Carey have all been eager to attack Sharyl Atkisson and CBS for daring to portray some of the harsh realities that affected Alex Spourdalakis and his mother.

Television (Big Bang Theory, any number of Criminal Minds police investigative type shows)  and the mainstream media generally, other than CBS and  Sharyl Atkisson and a few other honest conscientious reporters, will continue to portray autism as a quirky, brilliant set of personality traits, an alternative way of thinking. The majority of autistic adults and ALL severely autistic adults will continue to live in varying levels of residential care IF they are lucky. But if no one provides humane services, help and hope to the families and persons living with severe autism challenges nothing will change and the tragedies will continue.  The TGPA and ASAN corporate crowd can pretend otherwise but we have to speak up now and provide service now to prevent further tragedies.  We know this because it has happened before and nothing was done.  Below is my blog comment from 2010 concerning the man in Gray, Maine who shot and killed himself and his 22 year old autistic son:

Dennis Hoey of  The Portland Press Herald  reports that a man in Gray, Maine shot and killed himself and his 22 year old autistic son yesterday:

"A father shot and killed his autistic son Tuesday at their home on Yarmouth Road before turning the rifle on himself, Maine State Police said. Cumberland County sheriff's deputies found the bodies of Daniel McLatchie, 44, and his son, Benjamin McLatchie, 22, in the family's driveway at 227 Yarmouth Road around 2:30 p.m.  ... State police Sgt. Chris Harriman said ...  it appeared that Daniel McLatchie was upset about what would happen to his autistic son after he and his wife died. He was a stay-at-home father, Harriman said. Daniel McLatchie's wife, Allison McLatchie, 45, was at work when the shootings happened."

Ginger Taylor the Maine author of the Adventures in Autism blog, and herself the mother of an autistic son, was interviewed and  notes the lack of services including counseling services for families with autistic children.  Ms Taylor commented on the pressures on families with autism and on the greatest fear of many parents of autistic children:

"That is the big question -- what happens to our child when we die. .... We understand their needs better than anyone else. It really breaks my heart hearing what happened to this family. It shouldn't be like that."

Many people will undoubtedly condemn Daniel McLatchie for taking his son's life.   Some will call for more services.   Few, if any, will take the real action necessary to ensure that people  with autism disorders like Benjamin McLatchie have a decent place to live when their parents are dead.    

Few, during Autism Awareness Month, and certainly not Hollywood or the main stream media giants, will look beyond the  accomplishments of a few High Functioning media celebrity "autistics" to  even acknowledge the existence of severely autistic persons living desperate lives in institutional facilities.  Even fewer will acknowledge, without mocking or attacking them, the fears of parents  obsessed with worry about what will happen to their children after they die. 

In the end, whether it is at the hands of a distraught parent, or from life in prison like, psychiatric hospitals, it is the most vulnerable, the most severely affected by autism disorders who suffer from lack of reality based autism awareness and support services.

My Reply to Non Autism Expert Dr. David H. Gorski Also Known as ORAC

Dr. David H. Gorski, who is NOT an autism expert, somewhat ironically,

  attacks parents, professionals and journalists who disagree with

his autism disorders opinions as "quacks"

Dear Dr. David H. Gorski.

Thank you for acknowledging your total lack of autism expertise.  For the benefit of  readers unfamiliar with your "style:" I did not make the statements set out in quotation marks by you,  the learned Dr. Gorski which you altered to suit your (silly) purposes.  The statements in quotation marks are silly distortions, falsifications, of what I actually said in my blog comment on the Alex Spourdalakis case:

1. Orac

September 7, 2013

Shorter Harold (from that link):

“I’m awesome and know autism. I even have a Queen Elizabeth II Diamond Jubilee Medal to prove it! Emily Willingham doesn’t and is exploiting the Alex Spourdalakis murder for evil intent. Oh, and it will be decided by the court, not bloggers.”

That last statement is what I refer to as a “Well, duh!” statement and an attack on a straw man. No one is claiming that the Spourdalakis case won’t be decided by the courts.

Add to that in the comments here:

“You can’t comment on the Alex Spourdalakis case unless you’re an expert in autism or have personal experience with autism. If you do comment your are proclaiming yourself falsely to be such an expert.!

Seriously, though, I share Kreboizen’s curiosity about Mr. Doherty’s stance towards autism biomed.

BTW, I added a couple of fresh quotes about the Spourdalakis case to this post, one from John Stone and one from Kim Stagliano. They are doozies, so much so that I wanted to feature them somewhere. I didn’t think they deserved their own post, however.

2.     In comment #50 on your Respectful Insolence blog rant Is Sharyl Attkisson feeling the heat over her irresponsible reporting of the Alex Spourdalakis case?   I asked a simple question in respect of the trial of Alex Spourdalakis case:

Anyone here know if Dr. David H. Gorski will be appearing in the Court proceedings to give testimony as an autism disorder expert?

You moderated (changed)  my comment to change the name in my question from Dr. David H. Gorski, your actual name, to  Orac, the name  under which you attack and denigrate autism parents, professionals,  journalists and anyone else who questions your opinions.

Harold L Doherty

Canada

September 7, 2013

Anyone here know if Orac will be appearing in the Court proceedings to give testimony as an autism disorder expert

Why you ran away from this simple truth is not clear since everyone knows that the Disrespectful AND Insolent blogger Orac is actually Dr. Davd H. Gorski.

As for my blog reference to my QE II Diamond Jubilee medal it  is simply a recognition that my involvement with autism, apart from my son's own severe autism disorder has also included 15 years of successful advocacy for all children and students with autism in New Brunswick, Canada to receive evidence based  (as determined by real autism experts like those at the office of the US Surgeon General, the American Academy of Pediatrics and the Association for Science in Autism Treatment) early intervention and school instruction and support services.   At all times in any autism advocacy in which I was involved I have tried to follow such expertise and the expertise and guidance of local academics and clinicians, who unlike you Dr. Gorski, have considerable expertise in autism disorder issues.

Neither Ms. Emily Willingham nor Dr. David H. Gorski have published any references to indicate they have done any advocacy for children and students with autism disorders or that they have any academic or real life involvement with severe autism disorders and the impacts they have on parents and family members.  Instead they choose to attack parents of children with severe autism disorders about whose challenges both Willingham and Gorski are totally ignorant and ill informed.  

To address Dr. Gorski’s perpetual issue, and mode of dismissing any autism parent on any issue with which he disagrees, I support public vaccination programs and my family, including myself,  receive all vaccinations recommended by our family doctor. This fall I will receive a flu vaccine as recommended by my treating respiratory specialist after I was hospitalized this past spring with a respiratory infection coupled with an aggravated asthma attack. I follow my doctors' recommendations.   

Although I am not convinced of the role of vaccines (in causing autism in some cases) I do recognize that vaccines, like any medical treatment, can have adverse side effects.  This summer my younger son who also suffers from epileptic seizures suffered an adverse reaction to his anti-seizure medication of that time Lamictal/Lamotrogine.  ( For Dr. Gorski's benefit a high percentage of persons with autism also suffer from epileptic seizures, particularly when, like my son, they also have an intellectual disability). The conclusion that my son’s life threatening adverse reaction was caused by his medication rather than an infection was reached, after direct observation, testing and successful treatment  by the ICU team that saved his life, not by me.

Even the US Vaccine Court has recognized that vaccines can have harmful side effects some of which appear to relate to autism symptoms. (Dr. Gorski can challenge Dr. Jon Poling to a public debate  on that issue if he wishes to show off his all consuming  knowledge of science, vaccines and autism disorders.  No I won’t hold my breath waiting for a Gorski-Poling match  I don't  think Dr. Gorski has the parts for that).   What Dr. Gorski who is NOT an autism expert may not understand is that autism as a singular disorder is losing standing the community of autism experts who view autism more as a grouping of autism disorders or symptoms.  Arguably this paradigm shift will call into question some of the concessions made by the US in the Vaccine Court cases where autism like symptoms were acknowledged but not “autism”.

Dr. Gorski's venomous attacks on parents, professionals and journalists who do not share his views have not resulted, as far as I am aware, in an increase in public vaccination rates in the US. Given that fact it is difficult to see why he engages in such childish, unprofessional behavior other than one reason:  he enjoys making, he takes pleasure in making,  such attacks. There is only one person who has degraded Gorski's credibility to speak on autism issues and that person is "Dr" David H. Gorski himself. 

Alex Spourdalakis Killing Exploited by Neurodiversity Extremist Emily J. Willingham

Parents who speak honestly about the realities of autism disorders and the few journalists who dare challenge established views of autism causation are under attack .... again ... by Forbes Columnist Emily J. Willingham, formerly known, a few years before her Forbes career, as blogger Daisy May Fatty Pants.  Not content to express her legal opinions about the outcome of the criminal charges that have been brought against the accused killers of Alex Spourdalakis, his mother and a woman described by Willingham as Alex's "godmother",  Willingham launches into a tirade against parents who describe the harsher realities affecting those with severe autism disorders, parents of children with severe autism, children who do not sit as corporate trustees on organizations like the ironically named "Autism Self Advocacy Network" corporation:

"It’s become typical, again and again, for parents who murder their autistic children to get some kind of a “pass” from the commentariat and the news media because, well, autism is “such a challenge.” That’s in part because some autism organizations and members of the news media have successfully presented autism as a “monster” and a “ kidnapper” instead of as the developmental condition that it is. So in the public mind, an allegedly overwhelmed mother with “ no supports” should certainly be pitied and not judged harshly for killing the “monster.”"

I am a Canadian, not an American, lawyer.  Whether in Canada or in the US though I would not presume to know the outcome of a judicial proceeding.  Since there does not appear to be any question about WHO killed Alex Spourdalakis,  or that his killing was intentional, and if those appearances are confirmed in court,  I assume all relevant evidence will be considered in determining what sentences will be handed out to the accused.  That evidence will probably include the stresses on those involved including the mother's mental health at the time of the relevant actions and the mother's views on why she killed her son.

As the father of a 17 year old son with severe autistic disorder, profound developmental delays and epileptic seizures I know that once I have passed on my son's life prospects will almost certainly diminish.  Now at home and school he is living a happy life by the measure of anyone who knows my son including those who know him best ... his mother and father.  My son is cherished and I would not and could not do what the mother of Alex Spourdalakis did but I can not stand in the shoes of Alex's  mother,  I have not lived the stresses and challenges she has faced.  

The realities of life with a severely autistic child can be very, very stressful and it has been often in our household.    Some people break under pressures.  To date neither I, nor my wife have broken.  As a lawyer I have some advocacy skills and I have been active in advocating for early intervention and school services for children with autism in our province.  Some people have also flattered me as being of strong character .... others have simply pointed out, probably more accurately,  that I am just stubborn. 

I am continuing to advocate for early intervention and school autism  services and for adult autism residential care services.  My autism advocacy efforts have received some modest recognition as a New Brunswick recipient of the Queen Elizabeth II Diamond Jubilee Medal:

I do not mention my modest accomplishments for the purpose of self aggrandizement.  I mention them because despite the challenges faced in our home arising from caring for the severely autistic son  we love I also have some advantages, as a lawyer with an advocacy career,  in coping with those challenges. Not all parents enjoy similar advantages in dealing with the stresses and pressures of raising a child with severe autism disorders. 

 While attending a law school class reunion brunch several years ago I brought my son Conor with me.  I didn't know if, or for how long, he would be able to manage the event.  As it turned out he loved it. The ball room in which the brunch was held, my classmates and families present were quite orderly and the food was excellent.  Conor was quiet and enjoying the view when a waitress at the event approached our table and asked if he was autistic.  I answered yes but asked her how she knew since he had been sitting very quietly, happy and I thought unnoticed.  She replied that she had 3 children of her own.  I have never forgotten that encounter or the realization that for her as a waitress, without a professional advocacy background,  and with the challenges of raising not 1 but 3 autistic children she probably faced greater challenges than I could imagine.  I have tried not to judge other parents of autistic children the way Willingham and other business sponsored "autism is a condition .... not a disorder" Neuordiversity ideologues do.   

Whether Willingham and other business publication writers,  vaccine industry sponsored writers and Neurodiversity extremists like to admit it or not when people receive an autism diagnosis, which is a medical diagnosis,  they do so because autism is a disorder not a "condition".  The term is now formally known as Autism SPECTRUM DISORDER with three levels of severity with respect to the varying levels of support in daily living required: support, substantial support or very substantial support.  My son requires very substantial support as it appears Alex Spourdalakis did. 

It would be better, instead of using his death as a launching pad for attacks on parents who do not share her Neurodiversity "autism is a beautiful, alternate way of thinking" ideology  if Willingham would actually use her bully pulpit at Forbes to explore the harsh realities confronting those with severe autism and their families and actually advocate for services for them.  But no I won't hold my breath waiting for such a great awakening.  

A US court will determine the fate of the mother of Alex  Spourdalakis.  I suspect, despite pressure from Forbes' columnist Willingham and other business sponsored writers and Neurodiversity ideologues the harsh realities of the life of Alex Spourdalakis, his severe autism disorder and the impacts of that disorder on his family will become known to the public. 

The Harsh Reality End of the Autism Spectrum

If you believe IACC Neurodiversity advocates  present and past,   Ari Ne'eman and Matthew Carey,  autism is not something that should be cured.  You won't see much about the harsher aspects of life with autism disorders if you read their writings. In their view autism is nothing more than a different way of thinking, not a ...  disorder ... or group of challenging symptoms for which cures are needed.

No, the enlightened  Neurodiversity thinkers who are selected to represent the mythical "autism community" at the IACC see autism in the image of the members of the ASAN Board of Directors, researchers who work with Dr. Laurent Mottron or successful entrepreneurs.  For them, and other ND True Believers,  autism's greatest horror occurs on those rare occasions when a media outlet like Slate presents a perspective of a parent whose child presents with autism, intellectual disability and seizures, to say nothing of serious self injurious behavior or unintended aggression toward family and others who actually care for them.

I was surprised today to see CNN present a video of a family using marijuana to alleviate their son's very serious self injury.  Below is the video as shown on KPTV 12 Portland, Oregon  showing some painful realities from the harsher, severe end of the autism spectrum, far away from the irrational ideology of the Neurodiversity advocates who misrepresent autism to the world:

Following is a video From Kim Oakley a gutsy, honest mother of a severely autistic son with epilepsy and author of the blog Autism, Epilepsy and Self-Injurious Behavior, also much different from the high functioning autism of  media stars,  academics and ASAN corporate directors:

 

In the DSM5 the APA is continuing the process of eliminating the intellectually disabled and most severely challenged from the autism spectrum.  They are reducing the intellectually disabled from the vast majority of the autism spectrum pre-DSM-IV to the small segment that IACC Neurodiversity rep Matthew Carey falsely presents to the world.  

This forced removal of the intellectually disabled from the autism spectrum will not help them. It will not aid us in understanding why persons with symptoms of autism, intellectual disability and epilepsy are so prevalent in association with each other.  It is not based on "science".  It is intellectually dishonest. It is cold indifference to the realities of severely autistic children and adults. 

Autistic children and mothers were once hurt by the unsubstantiated cold mothers theories of Kanner and Bettleheim. Today it is in fact parents who know of the realities facing their severely autistic children far better than the academics and Neurodiversity ideologues who are once again banishing them from sight.  

Today the real cold parents are the clinical and research professionals who are supposed to help autistic children but are abandoning those most in need of their help. They are, to borrow the APA expression, cleaving meat loaf at the joints. they are cleaving from their sanitized spectrum those who present with the most challenging autism symptoms. 

IACC Neurodiversity Member Matt Carey Single-Handedly Reduces Intellectually Disabled To A "Small Segment of the Autistic Population"

The Interagency Autism Co-ordinating Committee (IACC) plays an important role in autism research and understanding.  It is unfortunate that sitting as a public member of the IACC is lbrb blogger Matthew J. Carey,  a member of the Neurodiversity movement which, at its core (1) portrays autism as a different way of thinking  not a disorder or disability and (2) belittles efforts to seek cures for autism. His official bio posted on the IACC web site emphasizes his considerable background as an industrial researcher and his deep commitment to "communicating the importance of getting the science right for autism".  The bio is very specific about his many accomplishments in  industrial research. Although it does describe him as a blogger the bio makes no mention of  Matthew J. Carey, Ph. D.'s anti-cure, autism is a strength Neurodiversity ideological biases:

Matthew J. Carey, Ph.D.

Parent and Autism Blogger

Dr. Matt Carey joined the IACC as a public member in 2012. Dr. Carey is the father of a young child with multiple disabilities, including autism spectrum disorder, and is a frequent contributor to the Left Brain/Right Brain blog and other autism blogs. His writing focuses on reviewing current autism research in an understandable way for the public and he is deeply committed to communicating the importance of getting the science right for autism. He is also interested in analyzing trends in health and education public data sets; his critique of "Timing of Increased Autistic Disorder Cumulative Incidence" was published in the journal Environmental Science &  Technology and his analysis of parents' academic expectations for their children with ASD, based on the 2007 National Household Education Survey, was presented at a poster session during the 2011 International Meeting For Autism Research (IMFAR). Dr. Carey is an active industrial researcher in computer hardware whose current research interests include magnetic thin films, spintronics, and magnetic nanostructures. His work has been published in high-impact journals such as Nature Materials, Physical Review Letters, and Applied Physics Letters and he currently holds 106 patents or published patent applications. He received his B.S. in physics from Harvey Mudd College, his M.S. in Physics from the University of Illinois, Urbana-Champaign and his Ph.D. in Physics from the University of California, San Diego.

In a recent comment  at his lbrb blog criticizing the Slate article Is the Neurodiversity (ND)  Movement Misrepresenting Autism?", and its  author Amy S.F. Lutz, Carey singles in on her comments about autism and the intellectually disabled and in the process single-handedly reduces the numbers of persons with autism and intellectual disability:

 "The fact of the matter is that intellectual disability, especially those unable to read, write and/or speak, is a small segment of the autistic population. And as we learn more about autism, this fraction is an ever shrinking percentage of the identified autism population."

The fact of the matter is that,  according to CDC autism expert Dr. Marshalynn Yeargin-Allsopp, persons with autism once constituted the "vast majority" of persons with autism ... until the APA expanded autism by grouping it with PDD-NOS and Asperger's in the DSM-IV group of pervasive developmental disorders now known as the "autism spectrum" reducing the intellectual disabled to approximately 40% of the entire autism spectrum.  

The fact of the matter is that, according to  CDC surveys in 2004 and 2006 those with intellectual disability still constituted 41-44%  of the entire autism spectrum.  

The fact of the matter is that in Autism and intellectual disability: a study of prevalence on a sample of the Italian population, La Malfa G, Lassi S, Bertelli M, Salvini R, Placidi GF, the authors reported that their study confirmed the relationship between ID and autism and suggested a new approach in the study of ID in order to elaborate a new integrated model for people with ID and autism.

The fact of the matter is that IACC member Matthew J. Carey,  Ph. D., (Physics), accomplished industrial researcher, provided no sources or authorities for his claim that intellectual disability is a small segment of the autistic population.  

Of course in fairness to Matthew J. Carey, Ph. D., industrial researcher, his Neurodiversity beliefs probably didn't  allow his purported commitment to "communicating the importance of getting the science right for autism" to function properly.   

Amy F.H. Lutz is of the view, as am I, that Neurodiversity misrepresents autism.  IACC member Matthew J. Carey's attempts to single-handedly reduce the numbers of intellectually disabled is a very clear example of such misrepresentation.

TPGA Aghast and Angry: Slate Dares Print Autism Parent Critique of Neurodiversity Ideology

TPGA guru Shannon Des Roches Rosa (SDDR) is aghast and angry because Slate.com has dared publish "Is the Neurodiversity (ND)  Movement Misrepresenting Autism?", a gentle critique by autism parent Amy S.F. Lutz, of the harmful, irrational Neurodiversity ideology embraced by the leaders of the ironically named "Thinking" Person's Guide to Autism.   Self labelled as a guide for "Thinking" Persons the TPGA is harshly critical of anyone, especially autism parents, who disagree  with them; anyone who portrays autism as a disorder or as a group of disorders, deficits or symptoms.  In the Neurodiversity world of the TPGA  the autism and related symptoms of a child must be accepted as blessings, and attempts to treat and cure those symptoms, deficits or disorders rejected, by THINKING persons.  That is the true autism path according to Neurodiversity, that is the true autism path according to SDDR and the "Thinking" Person's Guide to Autism.  Woe to any parent or publication that dares disagree with the self appointed arbiters of rational autism thought at the TPGA.

In a quick and angry response to the Slate article  Des Roches Rosa was, to her credit, open and honest about WHY she was upset.  SDRR. as reflected in the title of her response, was upset because the author of the article questioned Neurodiversity ideology: Why Did Amy S.F. Lutz Attack the Neurodiversity Movement?.  The alleged attack consists of pointing out the fact that very high functioning self advocates who do not required medical treatment, or treatment of any kind, misrepresent the harsher realities of low functioning persons with autism disorders. She points out correctly that such misrepresentation, especially coupled with the DSM5 substitution of Asperger's for autism, will probably result in  ever fewer autism treatment advances.  Ultimately this misrepresentation and misdirection of resources will probably result in the very limited progress to date in autism treatment research being slowed even more ... to the detriment of the low functioning autistic persons most in need of progress in autism research.

The TPGA and other ND faithful will undoubtedly deluge Slate.com with demands that they be permitted an opportunity to present their replies to the Lutz article.  They truly believe theirs is the one true path and voices of dissent must  be silenced or at least drowned out. They believe that strangers are better placed to speak on behalf of low functioning autistic children then their parents, including me, who speak on  behalf of our own children.  

I have no desire to tell  high functioning autistic self advocates that they must seek treatment.  I have no desire to tell SDDR, or Kristina Chew referenced by SDDR, that they should seek treatment for their low functioning autistic children.  I absolutely will not, though,  let them speak on behalf of my son.  I urge all parents who want to see treatments developed for their autistic children to continue the fight. The ND movement including the TPGA are set in their ways and will continue to try and impose their views of autism on the world.  For our children's benefit we will  have to continue to speak up and attempt to counter their misguided efforts. 

Thank you Amy S.F. Lutz for speaking out.