Larry's Gulch Inclusive Education Review June 21, 22, 2012

Meeting of Senior Department of Education Officials With Gordon Porter And Other Advocates of Extreme Everyone In the Mainstream Classroom Inclusion June 20, 21, 2012
Information from CANADALAND web site.

L: Yude  M. Henteleff, C.M., Q.C., L.L.D. (Hon.)     R: Harold L. Doherty 
at the Atlantic Human Rights Centre Inclusion Conference Crowne Plaza Fredericton-Lord Beaverbrook, June 14, 15, 2012 Mr. Henteleff presented, a paper advocating for a range of learning placement optionsin order to ensure meaningful inclusion:  MEANINGFUL ACCESS, INCLUDING THE PROVISION OF A WIDE RANGE OF PLACEMENTS, AS AN INTEGRAL PART OF INCLUSIVITY IN EDUCATION

It was a privilege, on June 14, 15, 2012  to attend the Atlantic Human Rights Centre Inclusion Conference at the Crown Plaza in Fredericton and to meet the very distinguished lawyer and disability advocate Yude Henteleff above. I personally have tried for many years to advocate for a rational evidence based inclusive education policy that provides a range of learning environments to accommodate the diverse challenges and needs of persons with disabilities particularly students with autism spectrum disorders.  Unfortunately anything that was discussed at that conference was not likely to have been considered by the NB government and department of Education officials when they met with Gordon Porter, and other "all students in the mainstream classroom inclusion philosophy " one week later at Larry's Gulch.

Autism Spectrum Disorder has been increasingly recognized for its heterogeneity particularly with respect to cognitive deficits, sensory challenges, self injurious behaviors,  and learning disabilities.  In NB the fight for an education policy that allows for alternative learning environments to accommodate those students, like my son, who do not function well in the regular classroom, and can even be harmed by that location,  has largely been undone by Gordon Porter and the NBACL including various members of the influential Carr family and their NBACL associate Danny Soucy.  At the June 14 2012 conference above Mr Henteleff and I were  voices advocating for evidence based accommodation of the needs of students with disabilities.  Gordon Porter was there presenting individuals with anecdotal horror stories about segregation. 

The conference appeared to have been a waste of time and money.  One week later,  at Larry's Gulch,  senior education officials and government officials met with Gordon Porter, Canada's most  obsessive advocate for reducing learning options for all students to the mainstream classroom.  Neither I, a former ASNB president and long time critic of NB's extreme mainstream only inclusion policy, nor the distinguished lawyer and disability advocate Yude Henteleff were present.

I  met Mr Porter,  NBACL/CACL icon,  on several occasions during the MacKay and Ministerial Committee inclusive education reviews. During a breakout session in a room at the MacKay review Gordon Porter grew visibly annoyed with me and another ASNB parent advocate when we advocated a range of learning settings to accommodate some students with autism disorders who would have difficulty functioning in the mainstream classroom.  He dismissed our comments by telling us that "you people should be thankful" for what we had.  I  have no doubt that when he attended Larry's Gulch with fellow NBACL official,  and co-author of the last of several inclusive education reviews, Angela Aucoin, Krista Carr of the NBACL and her husband Jody Carr, then the Minister of Education, and Danny Soucy MLA and NBACL official at various times,  that he pushed his obsessive,  extreme inclusion philosophy and made no positive mention of the need for a range of learning environments to accommodate those with severe autism and other disorders.

I wasn't present at the Larry's Gulch inclusive education review but I am sure that it likely topped the  Wayne MacKay and Ministerial Committee reviews and any views that did not support the Gordon Porter extreme, all students in the mainstream classroom, inclusion philosophy.

Intense World Theory Of Autism? Or Just More Intense, Harmful Speculation?

My younger son will be 18 this month.  He is severely autistic, with intellectual disability, and suffers from seizures for which he receives medication.  He was diagnosed with an autistic disorder the day after his second birthday.  The diagnosis was made after several months of testing and observation.  Since my son's diagnosis the defining criteria for an autism disorder diagnosis has changed.  It has become increasingly clear that "autism" as a disorder, as a concept for understanding my son's condition has become lost in a system, the DSM,  that NIMH Director Tom Insel has said lacks validity.  Insel, in another flash of common sense and candor,  has referred to the "autisms" rather than a single autism.  The unitary spectrum DSM5 ASD has been foisted on the world in an exercise of professional vanity unjustified by any convincing evidence base, built instead on a sloppy base of assumptions that will fulfill a policy goal of "reducing" autism diagnoses while excluding very high functioning AND difficult, severe autisms, from "autism" research and from autism insurance coverage.  Against this background a new "theory" of autism has emerged .... the Intense World Theory.  

It is beyond me as a common sense driven father who has lived with my son's severe autism and tried to ensure the best life possible for him how autism researchers, years after the Refrigerator Mothers/cold parents fantasy of autism causation caused so much very real harm, could blithely jump into the deep end of another potentially harmful, non evidence based autism fantasy. 

Maybe the Intense World Theory WILL prove to be the "unifying" theory that it pretends to be.  Personally I doubt it.  As the authors, K and H Markram's abstract itself makes clear: "Autism covers a wide spectrum of disorders for which there are many views, hypotheses and theories." Why do the Markrams then immediately propose a unifying theory of autism instead of studying the various individual "autisms"?  Why assume that attempting to unify the autisms, what is now widely regard as a heterogeneous, varied set of disorders/conditions/symptoms will be of any benefit to understanding those conditions or discovering treatments for them?

As the father of an autistic son my 18 years of direct experience and observation with years of severe autism disorder of my son is given no weight by autism researchers but I no longer automatically give the researchers a pass either in assessing their classroom/clinic/lab understanding of autism.  My son, diagnosed at age 2 and a day because of the severity of his symptoms does not have the same "autism" as J E Robison, Ari Ne'eman or any other very high functioning, diagnosed as adults, "autistics". I do not believe my son's "autism" or group of symptoms called autism, can be unified in any meaningful way with the autisms of these very, very high functioning individuals. 

With the view that autism is a single disorder under challenge from some very credible sources I am surprised to see a "unifying" theory of autism being put forth at this time ... with no evidence basis.  As an admittedly self appointed director of  "autism research" I direct the research community to take several large gulps of humility and go straight to the Common Sense Clinic where you can focus on researching and finding treatments for the individual conditions, symptoms and challenges of the various "autisms".    

The intense world theory - a unifying theory of the neurobiology of autism.

Markram K, Markram H.

Author information

Abstract

Autism covers a wide spectrum of disorders for which there are many views, hypotheses and theories. Here we propose a unifying theory of autism, the Intense World Theory. The proposed neuropathology is hyper-functioning of local neural microcircuits, best characterized by hyper-reactivity and hyper-plasticity. Such hyper-functional microcircuits are speculated to become autonomous and memory trapped leading to the core cognitive consequences of hyper-perception, hyper-attention, hyper-memory and hyper-emotionality. The theory is centered on the neocortex and the amygdala, but could potentially be applied to all brain regions. The severity on each axis depends on the severity of the molecular syndrome expressed in different brain regions, which could uniquely shape the repertoire of symptoms of an autistic child. The progression of the disorder is proposed to be driven by overly strong reactions to experiences that drive the brain to a hyper-preference and overly selective state, which becomes more extreme with each new experience and may be particularly accelerated by emotionally charged experiences and trauma. This may lead to obsessively detailed information processing of fragments of the world and an involuntarily and systematic decoupling of the autist from what becomes a painfully intense world. The autistic is proposed to become trapped in a limited, but highly secure internal world with minimal extremes and surprises. We present the key studies that support this theory of autism, show how this theory can better explain past findings, and how it could resolve apparently conflicting data and interpretations. The theory also makes further predictions from the molecular to the behavioral levels, provides a treatment strategy and presents its own falsifying hypothesis.

Waterhouse & Gillberg: Why Autism Must be Taken Apart

The belief that there is a single defining autism spectrum disorder brain dysfunction must be relinquished. - Waterhouse and Gillberg, Why Autism Must Be Taken Apart

I am not going to offer too much comment on the article by Lynn Waterhouse and Christopher Gillberg itself  which, as the title indicates, argues that autism must be taken apart, at least for research purposes.  I have not yet purchased or read the article. The abstract speaks very clearly and even I, as an ignorant, hysterical, misguided parent of a son WITH severe autism disorder, intellectual disability and epileptic seizures can understand. Waterhouse and Gillberg address themselves to the important needs of studying individual variation and finding specific treatments which are difficult to achieve in the artificially combined "autism spectrum disorder". 

The authors' views are important in and of themselves as autism experts.  They are also important because parents concerns on such subjects as the characterization, the artificial, non evidence based,  unification of autism disorder(s) are automatically dismissed.  The lumping of Aspergers in with autistic disorder under the pervasive developmental category of the DSM-IV created a whole new generation of extremely high functioning, adult diagnosed"autistics" and "free ranging Aspies" who declared that THEY speak for all persons with autism. Michelle Dawson even appeared as an "autistic" before the Supreme Court of Canada in the Auton Case to oppose government funded early ABA intervention for autistic children ... other people's autistic children. 

My son can not speak for himself.  As his father I speak for him and I know him best in doing so.   As a parent I reject absolutely the right, or the knowledge base, of Michelle Dawon, JE Robison, Ari Ne'eman or anyone else to speak on behalf of my son.  To those parents who think that the insights of some high functioning autism celebrities can offer assistance to their children I hope that, in their cases, they are right and I wish them well.   

Personally I hope that the autism research community follows the direction offered by Waterhouse, Gillberg, Insel who wrote about autisms and the lack of validity of the DSM generally, and Giacomo Vivanti who has commented on the need for researchers to look beyond the "pure autism" model of autism research.  Autism heterogeneity ... it is obvious to those who live in the real world of autism disorders ... it should be obvious and should be embraced by the autism research community.

Journal of Autism and Developmental Disorders

January 2014

Why Autism Must be Taken Apart

• Lynn Waterhouse, 
• Christopher Gillberg

Abstract

Although accumulated evidence has demonstrated that autism is found with many varied brain dysfunctions, researchers have tried to find a single brain dysfunction that would provide neurobiological validity for autism. However, unitary models of autism brain dysfunction have not adequately addressed conflicting evidence, and efforts to find a single unifying brain dysfunction have led the field away from research to explore individual variation and micro-subgroups. Autism must be taken apart in order to find neurobiological treatment targets. Three research changes are needed. The belief that there is a single defining autism spectrum disorder brain dysfunction must be relinquished. The noise caused by the thorny brain-symptom inference problem must be reduced. Researchers must explore individual variation in brain measures within autism.

SFARI Continues Misrepresenting High Functioning Autism Only Research As "Autism" Research

The Simon Foundation Autism Research Initiative, SFARI, continues to represent studies involving only high functioning autistic participants to the public as "autism" studies.  In the Children with autism have trouble recalling memories article posted January 3, 2014 SFARI reports as an "autism" study a study which excluded as participants the 50% of those with an Autism Spectrum Disorder who also have an intell5ectual disability (World Health Organization estimate, September 2013):

"Children with autism have trouble recalling memories

Laura Geggel

3 January 2014

Children with autism struggle to remember details of events from their own lives, reports a study published 27 November in Development and Psychopathology. .... The researchers looked at 63 children with autism who have intelligence quotients of 70 or higher, and 63 controls, all aged 8 to 16."

The SFARI article/opinion piece makes no mention of the large numbers of persons with autism SPECTRUM disorder who also have an intellectual disability.  It did not caution members of the public that the study results may apply only to the higher functioning 50% of persons with autism disorder.  It is repeating the misrepresentation of high functioning autism only research as "autism" research as it did just just over a week ago in the article Autism brains are overly connected, studies find. 

Dr. Catherine Lord stated several years ago that autism research was marked by an under representation of subjects with intellectual disabilities:

"Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families:

""However, research in ASD has tended to use overwhelmingly White, middle to upper middle class samples, and has often excluded children with multiple disabilities and/or severe to profound intellectual disabilities". [underlining added - HLD]

Autism research has continued to exclude persons with severe to profound intellectual disabilities, a practice questioned by Giacomo Vivanti and his colleagues in a recent article. It is now also widely recognized, at least outside of SFARI organization circles, that "autism" is very heterogeneous in nature. 

Intellectual disability is one of the  most numerically significant and important elements in the heterogeneous autism spectrum. Maybe someone could send a memo to the SFARI commentators. 

Severe Autism Disorders: Conor's Autism Progress: Teeth Brushing and Tickle Shaves!

Conor Doherty sporting a big smile after a quick 

tickle shave adventure with Dad this morning

Many famous "autistics" were not diagnosed until they were adults and have turned their diagnoses into good career opportunities: John Elder Robison, Michelle Dawson, Ari Ne'eman and Mr. Ne'eman's colleagues, the fellow corporate trustees of the Autistic "Self" Advocacy Network.  For these extremely high functioning "autistics" autism is merely a difference not a disorder and they object, some even demonize, parents who talk about autism DISORDERS and seek TREATMENTS and CURES for their autistic children.  For my son, who unlike all of the aforementioned, was diagnosed with a severe autism disorder and developmental delay the day after his second birthday autism is a disorder that severely limits his daily functioning abilities.  

For Conor progress is not measured by speaking appearances at, or provision or participation as an Autism Speaks science advisory board or Washington press corps events.  It is not measured by success as a letter carrier with Canada Post, (a challenging job of which I have professional knowledge), a career researching high functioning autism or service on corporate boards for Autism Speaks or ASAN.  Nor will he be asked to participate on the IACC in the United States or similar agencies in Canada if they are ever established by a future, post Stephen Harper, federal government.  

Conor's progress though is measured in activities that are important and bring us great joy and happiness when they can be measured.  We are not part of the confused crowd that tries to sway public opinion into thinking that we should love the autism disorder from which our son suffers, the disorder that severely limits his daily functioning abilities.  For us Conor's progress is measured by excellent dental checkups and the ability to get his face shaved to make him presentable to attend at the school he loves so much.  Following are two recent Facebook posts which speak to Conor's progress in these important areas:

Tickle Shave Progress! Conor is now a young man and his whiskers need to be trimmed regularly. As with haircuts, and to an extent more so, Conor is nervous with razors scraping his face. I have called his shave a tickle shave to try and make it less frightening and I involve Conor in scheduling a shave. Yesterday I talked with Conor about having a tickle shave before school this morning. Shortly after he woke me up at 6 am sharp (as always) I asked him if we could have tickle shave at 7 am and asked him to let me know when it was 7. Conor let me know at 7 and we got a tickle shave done more quickly, and with less discomfort for him, than we have previously. A good start to the week!

Conor's dental checkup this afternoon went very well. Conor was cool, calm and collected sitting in the dentist's chair even while Dr. Andrews did a tiny bit of cleaning. The verdict: Conor's teeth are looking great!!!! I honestly believe Conor enjoys brushing his teeth.

Autism disorders are now widely recognized to be heterogenous in nature with wide variations in intellectual ability (50% of persons with autism also have an intellectual disability, WHO, September 2013), some have epilepsy, some suffer from depression, some from self injurious behavior.  Some leave the security of home and school, in some cases resulting in tragic ends.  My son left our house, on my watch, while I was occupied on a business call. Fortunately a good Fredericton citizen took him to a nearby convenience store, called 911 to report my son's presence there and waited until I arrived frantically after calling 911.  The good citizen, on learning I was there as Conor's Dad just left without giving me a chance to thank him.  My son also suffers from intellectual disability, self injurious behaviors and meltdowns and serious epileptic seizures.  Progress for my son is not measured in corporate board memberships or book sales, it is measured in calm dental checkups and good teeth.  It is measured in being able to shave the heavy beard from his face without too much discomfort to him to ready him for school.  My son has a severe autism disorder among the many variations of this heterogenous disorder.  The very high functioning media stars diagnosed as adults have much different measures and much different autism disorders.  They can sell all the books they want, build all the careers they want but they do not speak for my son with severe autism disorder.

Autism Breakthrough? Autism Speaks Recognizes Autism Heterogeneity!

Rethinking Autism Variation and Complexity by Lynn Waterhouse is a recent work which provides a thorough, expert and extremely well researched picture of the variation and complexity of  autism spectrum disorders.

Hopefully the rest of the professional and academic autism community will read Rethinking Autism and come to grips with autism variation, complexity and heterogeneity. The highly influential autism advocacy corporation Autism Speaks has typically done a poor job of representing the heterogeneity of the autism spectrum of disorders. AS has aggressively promoted the careers of John E Robison and Alex Plank two very, very high functioning persons with Aspergers/Autism Spectrum Disorders.  At the same time Autism Speaks has also obscured the existence of the 40% of persons estimated to have autism and an intellectual disability and the large number of persons with autism who also suffer from epileptic seizures.


In what may be a major breakthrough for Autism Speaks, in the post Geraldine Dawson era, and a possible step forward in public understanding of autism disorders a high ranking Autism Speaks official, Michael Rosanoff, Autism Speaks associate director for public health research and scientific review, has acknowledged the heterogeneity of autism spectrum disorders in clear, unambiguous terms, in  a Detroit Free Press article Brain changes of autism may begin in the womb:

"Rather than one disease, autism is now regarded as a collection of conditions with similar traits but different causes, Rosanoff says. People on the autism spectrum are extremely diverse. Some are non-verbal and profoundly disabled; others have successful careers, particularly in science and technology, describing themselves as different, rather than disabled. "Autism is so heterogeneous," Rosanoff says. "We're never going to get to the one cause.""

For anyone else, including other Autism Speaks officials who want to catch up to Mr. Rosanoff in understanding autism disorders, autism researchers and major media columnists interested in a thorough, scholarly view of autism spectrum disorders I strongly recommend Rethinking Autism: Variation and Complexity by Lynn Waterhouse. 

Autism Self Injury and Aggression Can Occur Quickly With No External Provocation

The pictures set out below this commentary were taken in May 2012 and posted on   Saturday, May 26, 2012 under the title Conor's Autism Reality: From Joy To Self Injurious Behavior In A Flash.  I was taking these pictures of Conor enjoying a swing on the playground of his old grade school, Nashwaaksis Memorial School.  It was early Saturday morning, no one else was around; there were no loud noises or disturbances. The weather was pleasantly cool and mild.  Conor was loving his time on the swing and then ... just like that ... he was engaged in self injurious behavior as set out in the last two pictures of this set ... with no external factor whatsoever.  Whatever prompted the head hitting and hair pulling of the last two pics was purely internal. His self injurious behavior in this instance was not an isolated occurrence.  It has happened before and since.  Nor is it always self injurious.  There are times when Conor has been aggressive with his mother and father.  I have  never believed for a second that he actually intends to hurt either of us. Some times he is reacting to external stimuli such as the sound of a phone ringing. It is my belief that when he is aggressive to himself or others he is most often  reacting as he did in these pictures to internal disruptions of some kind.  

I am not generalizing from Conor's reality to those of other persons with autism symptoms or disorders. I was, from the beginning of my understanding of Conor's condition, and during the early days of my autism advocacy, annoyed with people like Michelle Dawson and Dr. Laurent Mottron whose affidavit evidence as an autism expert supported her application for intervener status when she appeared before the Supreme Court of Canada in the Auton case as an "autistic" to oppose government funded Applied Behavior Analysis treatment for other people's children.  I never accepted that  my son with severe autistic disorder and profound developmental delays could be represented even indirectly by this person capable of addressing Canada's highest court. 

Nor do I subscribe to the unsubstantiated belief that persons with autism are responsible for planned violence like the horror committed in the Newtown massacre by a person rumored to have autism/Aspergers.  I do acknowledge though that, at least in my son's case, unplanned, spontaneous, "reactive" aggression  to use CNN's Dr. Sanjay Gupta's term, can occur and can occur in a flash.  Depending on the setting, for example sitting in the back seat while Mom or Dad are driving, the consequences could be very, very serious.  Even in ideal circumstances such as the Saturday morning playground depicted below aggression, whether directed toward himself or those with him, can be serious and frightening. 

There may well be persons with autism disorders whose symptoms do not include self injurious behavior or injury to others. Great, I am happy for them.  But the public at large should not believe for a second that it is not present in some persons with autism in ways that are not always present in non autistic persons.  It is, for many persons with autism, a fact of the brain disorder(s) which manifests  in symptoms that we call autism.   Research is needed on the internal causes of self injury and aggression in persons diagnosed with autism. Treatments need to be developed.  Pretending such internally provoked or aggravated aggression is not part of autism won't make these realities disappear. 

Instead of spending years trying to streamline autism symptoms and disorders into one neat package it would be much more helpful if the aggressive component of the heterogeneity of autism symptoms were acknowledged and addressed through research and improved treatments.