The Children's Hospital of Eastern Ontario has been added as a respondent in a human rights proceeding, and accused of discrimination, after it kicked an autistic child with global developmental delay, severe intellectual disability, out of an early intervention program.

In an Ottawa Citizen article Don Butler reported:

"CHEO declined to comment specifically on the case Thursday. But in an email, it said the hospital’s care providers are “incredibly committed to the well-being of kids and would never discriminate against a child because of a disability. “Our clinicians have to make difficult decisions about the appropriate care for each child, and they always strive to base their decisions on the child’s unique needs and best interests.” The only reason a child would be discharged from the intensive behavioural intervention program, the hospital said, “is if the treatment were not working for him or her.”

The CHEO did not indicate what "the appropriate care" would be for a child with autism and global developmental delay OTHER THAN early intervention behavioural intervention.  It would be nice if the health "care" providers of the CHEO could indicate what other care was "appropriate" for this or any other child with autism and severe intellectual disability.

In the absence of any indication as to what other care would be of assistance to a child with autism and GDD, in lieu of early intervention,  the only reasonable conclusion is that the alleged health care providers of the CHEO have simply written such children off as unworthy of assistance.  

SFARI (Simons Foundation Autism Research Initiative), Risk of epilepsy in autism tied to age, intelligence, Laura Geggel, August 19, 2013

The information in the SFARI article above helps inform the public about a study and an issue of great importance, one that should be brought to the attention of parents, family doctors and pediatricians and clinical psychologists - the substantial numbers of persons with autism, intellectual disability, epilepsy. and the adolescent years during which many with autism and ID first endure epileptic seizures.

The study itself could be a capsule summary of my son's disorders during his first 17 years of life.  Diagnosed at age 2 (literally the day after his second birthday) , after several months of tests, Conor suffers from Intellectual Disability the ultimae taboo in autism world discussions.  Together autism and intellectual disability increase dramatically the chances of developing epilepsy.  As the article and study it reports indicate adolescence is an age when epilepsy appears for many with autism and intellectual disability.  That is exactly what happened with our son Conor.

Conor's first Grand Mal seizure, as I reported on November 17, 2012, (No Autism. Today, Conor's Grand Mal Seizure Scared The Hell Out Of Me) literally shook our world. We had reported what we thought were seizures to Conor's pediatrician 18-24 months before.  He would suddenly stare off looking away or close his eyes as though he was in pain. His pediatrician agreed they were probably seizures but indicated medication was probably not a good idea since there was no falling involved in his seizures.  On November 17 things changed dramatically with Conor's first Grand Mal.  He would later suffer a second Grand Mal,  and shortly thereafter a life threatening adverse medication reaction, which I have also reported on this blog.

Our experience led me to believe that pediatricians and other doctors, as well as clinical psychologists, should inform parents and advise them to be on the look out for the development of seizure activity in their autistic children.  Hopefully this major study reported by SFARI and the prestige of the Simons Foundation Autism Research Initiative will encourage professionals  to inform and educate parents of autistic children particularly those with intellectual disability to be on the lookout for seizure activity and how to recognize them.  They may also want to direct them to Silently Seizing written by Caren Haines, RN and mother of an autistic son who suffered from seizures.  The book pulls no punches in talking about the damage that can occur  from seizures and would be an honest introduction to the seizure activity and its risks. 

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:

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 Speaks has done much to create publicity around the word autism, the color blue, puzzle pieces and ... some very talented, high functioning individuals with autism diagnoses like Alex Plank and J. E. Robison.  In terms of its public statements and presentations though it does little to nothing to  raise awareness about one very basic fact: autism has a very close relationship with intellectual disability to the extent that 40% of persons with autism spectrum diagnoses (DSM-IV) also have intellectual disability. 

Prior to the DSM-IV and prior to the addition of PDD-NOS and Aspergers persons with intellectual disability constituted the vast majority of persons with autistic disorder.  Autism Speaks has reluctantly acknowledged that 40% of persons with autism have intellectual disability but does not reflect their existence in their press releases.  Autism Speaks conflicted attitude toward those with autism and intellectual disability was illustrated vividly in the recent Drake and J. Cole lyrics uproar when Autism Speaks defended persons with autism but not those with autism and intellectual disability. Instead of criticizing the rappers for their derogatory reference  to persons as “autistic, retarded." Autism Speaks went further and argued that in fact persons with autism are very successful and talented. No mention was made in the Autism Speaks press release of the 40% of the autism spectrum who are intellectually disabled even though the words "mentally retarded." have been replaced by the words intellectually disabled.  

Rapper J. Cole has offered what appears to this observer to be a very sincere apology, one offered without qualifications and one which actually offers a breakthrough for those who, like my son, suffer from severe autism. Unlike most prominent autism advocates rapper J. Cole actually acknowledged the existence of, and included in his apology, those at the severe end of the autism spectrum.  

Many autism advocacy organizations and "self" advocates routinely denigrate anyone who mentions severe autism disorders. Television series, movies and feel good mainstream media rarely acknowledge the severe, low functioning end of the autism spectrum. Rapper J. Cole's apology, however,  set out on his blog, DREAMVILLAIN, extended to all persons with autism disorders including those with severe autism and their families. 

I hope Autism Speaks, in particular, takes note of Cole's references to those with Aspergers AND those with severe autism and their families. If Rapper J. Cole can acknowledge the existence of severe autism surely Autism Speaks can do the same and start addressing the challenges facing the 40% on the autism spectrum who also suffer from intellectual disability and the many spectrum members who suffer from serious "comorbid" conditions like epileptic seizures. Cole's apology is set out hereafter in full, as stated on his blog, with my underlining added. 

My 17 year old son Conor who was diagnosed 15+ years ago with "autistic disorder" (now autism spectrum disorder) and profound developmental delays ( a euphemism for intellectual disability) is truly a gift. Conor brings great joy to our lives as shown on the sample pictures that follow.  While Conor is a joy, however, his autism disorder is not.  Nor is his autism disorder a GIFT or a SUPER ABILITY.

Conor's autism is a disability and a disorder and that is WHY he received a medical diagnosis of autism (autistic disorder).  While there may be some autistic individuals with special gifts he is not one of them.  Conor is one of the 40% of persons with autism and intellectual disability.  As you probably know that combination also makes him more likely to suffer from epileptic seizures and indeed Conor has suffered two grand mal seizures in six months.  He also suffered a life threatening reaction to his anti-seizure medication at the time. Other challenges brought by his autism disorder are wandering, self injurious behavior (self biting and head banging) and obsessive behaviors.  There is abundant literature indicating that those with autism, ID and epilepsy are at particular risk of shortened life expectancy.

Drake and Cole deserve to be admonished for their denigration of persons with autism AND for their denigration of persons with intellectual disabilities.  The solution, however, is not to circulate a petition which claims that autism is a gift or a super ability. In doing so you mislead the public about serious, challenges faced by the vast majority of persons with autism DISORDERS.  If you continue to misrepresent autism to the world you will probably cause harm to people like my son who in fact suffer from their autism disorders.  

I have been advocating publicly in my home province of New Brunswick, Canada for 15 years with other parents and we have achieved some success in ensuring that NB children with autism receive evidence based early intervention and that autistic students receive assistance from autism trained education assistants and resource teachers.  I have visited two psychiatric hospital facilities and met severely autistic adults living out their lives in those institutions and I continue to advocate for modern residential care and treatment options for adults with autism.

Any successes we have achieved, or hope to achieve, are based on presenting accurate, informed, evidence based portrayals of the realities of autism disorders to government decision makers and to the public at large.  Portraying autism as a gift misleads everyone about the real challenges faced by many with these very serious disorders.

Please reconsider your misleading public characterization of autism as a gift and super ability and acknowledge clearly that autism disorders are exactly that ... disorders.  My son is a gift, his autistic disorder is not. 

Respectfully,

Harold L Doherty

Fredericton, New Brunswick

Canada

Autism Speaks has joined rappers Drake and J. Cole in insulting persons with Intellectual Disability particularly the 40% of the autism spectrum with intellectual disability.  The rappers had published song lyrics referring in an insulting manner to persons who are "autistic, retarded".  Autism Speaks did not simply criticize the rappers for denigrating persons who were autistic or intellectually disabled. Autism Speaks criticized the rappers for perpetuating negative stereotypes and for failing to recognized the many persons with autism and "other" disabilities who have enjoyed great success and talents.  

Presumably it would have been OK in the view of Autism Speaks if the rappers had mocked only the 40% with intellectual disabilities or those who were not successful or did not display exceptional talents.   It is not clear to this father of a severely autistic son with profound developmental delays, who lacks an exceptional talent, who Autism Speaks for but it clearly does not speak for my son. 

There are no doubt many in the high functioning end of the autism spectrum community who would  be insulted by the rappers lyrics ... my son who would not understand the lyrics is not one of them. I love my son and I take insult at the smarmy lyrics of Drake and Cole simply because they intended to insult persons like my son who are autistic and/or intellectually disabled not because they failed to recognized the talents and intellects of higher functioning persons with autism disorders. I am also ticked off, but not surprised, by Autism Speaks for essentially endorsing the rappers mocking of intellectually disabled a term which does not even appear in the Autism Speaks criticism.   Nowhere are autism's 40% intellectually disabled more invisible than within the Autism Speaks agenda:

I have never subscribed to the assumption that Intellectual Disability is a co-morbidity as described by the authors of a new study examining Intellectual  Disability in Autism: (unrelated in etiology and causality from the ASD itself)  I have been frustrated by the historical tendency of  "autism" researchers to exclude intellectually disabled autistic subjects from their research studies.  I am very disappointed with Dr. Lord, Dr. Swedo, Dr. King and other APA members for their efforts to further the artificial disassociation of Intellectual Disability from Autism Spectrum Disorder (s) in the DSM5.  I have always believed, as the father of a severely autistic son with "profound developmental delay", and contrary to the "autism as strength" ideology of Dr. Laurent Mottron and Michelle Dawson, that autism and intellectual disability are inseparable components of my son's condition. I am very pleased to see reports of a new study, as set out in this brief online paper by the authors of that study, which begins to examine the ID and ASD relationship front on and with complete intellectual honesty.  

I hope that the proof of principle resulting from the study  that "ASD symptom severity contributes to the extent to which the environmental input required to support “typical” brain development can be processed by the individual, so that the risk of developing ID increases as the number and severity of ASD social-communicative impairments increase"  is pursued further and that additional research on this topic is not squelched by the political correctness of those who control autism research funding dollars.

I also hope that researchers study the ID in ASD issue from  different perspectives:  that the ID increases the severity of the ASD symptoms and that ID and ASD are simply different aspects of one condition.   This humble father  does not believe that my son's severe autism symptoms and ID are separate coincidental or "comorbid" conditions.  I am pleased to see these "down under" Austalian researchers joining the ranks of the few with the intellectual honesty and curiousity to study the Intellectual Disability component of autism symptoms and disorders.

In "The  new definition of autism" CBC News provides detailed descriptions of autism as represented by the five pervasive developmental  disorders in the DSM-IV and the Autism Spectrum Disorder in the now published DSM5.  With one major exception the article is a good summary of autism disorders pre and post DSM5. On another positive note the article expressly references ABA/IEBI as the primary evidence based intervention for autism treatment.  The major exception to this otherwise balanced, thorough article is the failure to mention, while describing conditions commonly associated with autism,  the substantial numbers of  persons with autism who also have an intellectual disability:

"What are some of the symptoms of ASD?

The CDC in the United States has estimated the numbers of persons across the autism spectrum who also have intellectual disability in the range of 41-44%:

There is no legitimate reason to ignore the large numbers of persons with autism disorders who also have intellectual disabilities.  It is a relationship that should be explored and studied (La Malfa)  not hidden  and stigmatized.

My autistic son's second Grand Mal seizure, of which I am aware, happened when I was in an adjacent room less than 15 feet away this past Sunday. I heard the noises when his seizure began and recognized them this time for what they were. I jumped up immediately, laid him on his side and cushioned his head while his Mom called the excellent 911 emergency responders who took Conor to the local hospital, the DECH, for the excellent care and attention they have have always provided members of our family. (Including me during my recent hospitalization for a major asthma attack). 

 I was scared this past November when Conor suffered his first Grand Mal seizure. I was just as scared this second time. I can't believe that this can happen repeatedly without serious life threatening consequences especially if no one hears him during the night, or if it happens during swimming which he dearly loves. Conor was seen by a neurologist just 4 days earlier and we had, after some base line blood tests were done, started on the low dose end of a progressively heavier medication schedule. Hopefully as the dosage is increased and has time to take effect the seizures will cease. 

Autism, as portrayed by most autism "awareness" groups, is far removed from the reality of severe autism with intellectual disability and sezures/epilepsy. I know it and the APA wizards who contrived the DSM5 ASD know it. Life will be easier for them and the researchers who conduct autism research while excluding those with intellectual disability, a trend which they have followed for many years and which is now condoned by the DSM5. The difficult conditions that are usually found with the severely autistic and make life difficult for autism researchers and clinicians ... intellectual disability, self injurious behaviors and seizures will be reduced substantially by being relegated to the invisible category of intellectual disability in the DSM5. 

I look at the multitude of "autism" studies on Google Scholar and have no idea what most of them involve in terms of autism as a disorder or the serious conditions which are related to the severe forms of autism. I do know that very few of them address the severe realities faced by my son. I do know that when the APA spends several years "recompartmentalizing" the diagnostic criteria for autism and epilepsy to come up with the DSM5 ASD they are doing no one with severe autism any favors. Their efforts and funds would serve a far better purpose if they followed the lead of the emergency responders and hospital staff at the DECH who have treated Conor and cared for him so well. Focus on helping people with autism, particularly those most in need, and save the idle academic curiosity "autism" studies for your retirement.

It is politically incorrect in today's autism world to acknowledge the existence of the invisible autistics, the one's unlike Ari Ne'eman, John Elder Robison, Alex Plank and  Michelle Dawson all of who whom have enjoyed great success and demonstrate considerable intelligence and most of whom have never met a television camera or gathering of journalists that offends them. Some of the extremely high functioning superstars of autism "self" advocacy have literally built careers telling the world what it means to be "autistic".   Meanwhile those with intellectual disability who constituted autism's "vast majority" prior to the DSM-IV expansion of the pervasive developmental disorder category to include Aspergers remain invisible and unmentionable in polite, successful autism circles:

Against that background I must give some slight praise to Autism Speaks for daring to mention, albeit hidden deep in  the FAQ section, carefully book ended by reference to autistic savant skills and those with normal to above average intelligence, that, Oh My Gosh,  40% of persons on the autism spectrum have an intellectual disability:

Autism Speaks, like the APA committee that drafted the DSM5 autism criteria to exclude the most severely intellectually disabled from an autism diagonosis even if they meet all the specific criteria for an autism spectrum disorder, does not wish to openly speak the truth: intellectual disability is not just a co-morbid or coincidental disorder that just happens to be present in the vast majority  of cases of classic autistic disorder. It is for the original vast majority a description of their  developmental deficits, while those with Aspergers do not have intellectual or language deficits most of those with Autistic Disorder do.  The intellectual disability is a feature of their autism disorder whether extremely high functioning Aspergers self advocates, fund raising entities like Autism Speaks or even the APA wish to acknowledge it.  

There is no reason to artificially separate the intellectual disability from the "autism" symptoms.  There is no scientific basis for doing so and it is morally and ethically wrong to do so.   

It is scientifically unsound to hide the reality that intellectual disability is an integral part of autistic disorder.  It is just as immoral and unethical to hide that reality, to pretend that intellectually disabled are not truly autistic as it would be to pretend that persons of different racial, gender characteristics or sexual orientations do not count as full human beings. 

A study presented at the IMFAR 2012 conference this spring in Toronto, Underdiagnosis of Autism Spectrum Disorders in Individuals with Intellectual Disabilies, seems to provide evidence contradicting the widely propagated assertion that the DSM-IV era has seen autism incorrectly diagnosed as a substitute  diagnosis in many cases of intellectual disability.  Roeyrs and Thys actually conclude that autism is UNDER diagnosed in a large study of persons with intellectual disability.  

If the study results are confirmed it seems likely  the harmful impact of the express, and intentional,  targeting for exclusion of severe intellectually disabled from the DSM5 autism spectrum disorder will be increased to the detriment of those most severely affected by intellectual disability and autism symptoms.  The missing of co-occurring autism disorder in persons with intellectual disabilities, as the authors indicate, could have serious repercussions for their care and treatment.  

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:

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:

Autism annual reviews have been published by a number of sources most of  which ignored or mis-characterized the most important autism event of 2012.  The most important event by far and the one with the most negative implications for those who actually suffer from autism symptoms was the APA approval, on  Saturday, December 1, just before the holiday season, of the DSM5 as it is now written including the new Autism Spectrum Disorder.  The new ASD will preclude future autism diagnoses for those most severely affected by autism symptoms: those with moderate to severe intellectual disability. 

I have written many times about the express targeting for exclusion of those with intellectual disabilities.   I have been virtually alone in my criticism of this exclusion but I stand by my objection to that exclusion.  It is reprehensible.  It helps  insurance providers and governments that seek to reduce provision of autism treatment and benefits.  It helps those academics and researchers who are building careers researching every trivial idea they find fascinating without helping or bringing anyone with an autism disorder any closer to treatment or cure of the symptoms which in fact restrict their ability to function in the real world.  They are now free to conduct autism research without the need to include difficult to work with intellectually disabled, severely autistic children and adults among their subjects. It helps those persons with High Functioning Autism and Aspergers, their parents and other loved ones, who feel stigmatized by association with low functioning, intellectually disabled autistic children and adults.

Intellectual opposition to the direction the DSM5 is taking autism did arise in 2012 in Rethinking Autism: Variation and Complexity by Professor Lynn Waterhouse. She has articulated in a very comprehensive analysis, backed by learned authorities on every point, the fundamental problems with the new streamlined, simplified version of autism.  The title summarizes her arguments succinctly: autism is in essence a group of symptoms characterized by variation, heterogeneity and complexity.  The unified, simplified DSM5 ASD ignores that heterogeneity.  Every parent, academic and clinician who has repeated Stephen Shore's caution,  now a cliche, "if you've met one person with autism, you've met one person with autism" knows that autism is heterogenous, varied and complex.  The DSM5 however, contrary to all research and real life experience, pretends otherwise.  The DSM5 ASD is a false step, a road block to the understanding of autism disorders, autism symptoms.  Debates over whether autism is increasing, and what factors are involved with causing autism will be muddied again for another generation by the redefinition of autism.

The moderately and severely intellectually disabled who otherwise display the social communication and restrictive, repetitive criteria of the DSM5's New Autism Spectrum Disorder, will not be included in the new autism diagnostic era. They will be relegated to the Intellectual Disability group which will receive very little research attention or dedication of resources.  After all it will be deemed wiser to concentrate resources, including treatment and cure research resources, on those for whom successful results are more likely .... just as the distinguished, open minded, intellectually conflict free and oh so compassionate members of the DSM5 autism committee have done in their pre-Christmas gift to the intellectually disabled, severely affected members of the pre-DSM5 autism spectrum.