Fredericton's North Riverfront Trail (aka Conor's Back Yard) May 2014

Above Conor out on the North Riverfront Trail this morning, May 11, 2014. 

Below, after a long tough winter followed by some high waters along the St John River it is nice to be able to  again walk Fredericton's North Riverfront Trail, barely a minute's walk from our home.  Best of all, the bird life is active again, very active on the North Riverfront Trail.  The pictures below were taken during this past week.

WOW! Major Autism Study Equating Environmental and Genetic Risk Factors Also Included Subjects with Classic Autistic Disorder!!!

The Familial Risk of Autism is the large study making waves for demonstrating that environmental considerations are roughly equivalent to genetic factors in autism causation.  Hopefully funding dollars will begin to flow toward the environmental side of the equation as many have urged for so long.  What is not generally mentioned in the media echoes of the study though is that it included many subjects with classic Autistic Disorder as stated in the study abstract in the JAMA:

"Results  In the sample, 14 516 children were diagnosed with ASD, of whom 5689 had autistic disorder."

Put another way subjects were not excluded from the study because they were not high functioning, Asperger's subjects.  For this fact alone the study is ground breaking, hopefully shattering the dominant trend of recent years of creating a false "pure autism" by excluding the original, classic autistics,  the "vast majority" of whom suffered from intellectual disability, (Yes Emily Willingham and Jon Brock, I said "suffered from"). 

The "it's gotta be genetic" crowd will still see what they want to see.  They will see the genetic half of the autism causation equation and will ignore the environmental half, pretend it doesn't exist as they have done for so long.  Likewise the inclusion of a proportionate number of subjects with classic autistic disorder, if discussed by the autism is beautiful crowd at the Thinking Persons Guide to Autism,  will be mentioned as a reason to criticize the study.  Still, the study does offer more hope of breakthroughs in the rigid mindsets who forbid honest discussion of autism realities be they environmental causation or the harsh realities associated with classic, low functioning autism DISORDERS from which so many who carry the Autistic Disorder diagnosis actually SUFFER.

Conor One Year Later!

Above: Conor this morning before Mom drove him to school  at the Leo Hayes High School Resource Centre.  Mom and Dad are very happy to have our Conor with us healthy and happy.  

Below: One year ago Conor was in the Intensive Care Unit of the Chalmer's Hospital for 6 days where he was unconscious for most of the first 3 days during an adverse reaction to his seizure medication at that time. We can't say thank you often enough to our family doctor and the emergency room and intensive care units at the Chalmers for giving us our Conor back.

Severe Autism Reality: Desperate BC Mother of a Severely Autistic Son Ends His Life and Her Own

Photo and caption from The Province, April 23, 2014 

Photo and caption from the Province, April 23, 2014 

As reported by Sam Cooper in The Province April 23, 2014 a small and desperate Prince Rupert, British Columbia mother has killed her large. powerful, self aggressive, autistic son and then killed herself.  Members of her family shared their story with The Province hoping to increase support for autistic children in northern BC. The article indicates that the son, Robert,  weighed approximately 270 pounds.  His mother Angie Robinson weighed 100 pounds.  

Angie Robinson's son Robert engaged in very severe self injury including smashing his head through the rear window of Angie's pick up truck and getting worse afterward until he had to be taken to a hospital and sedated with heavy doses of Ativan.  It is believed that Angie Robinson killed her son with a lethal dose of Ativan. The mother had gown desperate from a lack of support and no longer believed she could care for her son. 

According to The Province article the mother, Angie Robinson, left a final Facebook post before ending her life:

"On 11:56 a.m. on April 2, Angie Robinson wrote a last Facebook post: “More, more, more needs to be done for our teens with special needs, they are neglected … Canada needs more residential and respite care for families hoping to keep their children at home.”"

News of this tragedy will provoke more outrageous, ridiculous attacks blaming deaths like those of this desperate mother and her son on parents and organizations who provide honest descriptions of severe autism disorders.   Those who believe that autism is just a different way of being, a joy, even a blessing, will simply ignore the hard evidence, the hard reality, that parents of severely autistic children actually live first hand. 

Sadly, this is not the first such incident in Canada or the US. The inadequate group home networks can not provide the necessary long term professional care for challenging, severely autistic adults like Angie Robinson's son Robert.  A decent modern professionally run and staffed permanent residential care system is needed in BC and elsewhere in Canada ... including New Brunswick. 

Shannon Hill Speaks Up About About ABA Autism Intervention Benefits and Autism "Services" in Saskatchewan

Shannon Hill of Saskatchewan, parent of a child on the autism spectrum, 

Board Certified Assistant Behaviour Analyst, (Florida Institute of Technology ABA program), autism advocate and BA (Psychology)

Following is a letter written by Shannon Hill to Linda Restau director of continuing care and rehabilitation for the Ministry of Health, Province of Saskatchewan, including comments on ABA and its benefits for autistic children.

"Dear Ms. Restau,

I would like to take this opportunity to comment on the article presented by Ashley Wills of 650 CKOM April 22, 2014.

In the article you state with regard to Saskatchewan's funding for ASD services "That doesn't include some of the other services that individuals with autism may access through regional health authorities or other ministry services."

I would respectfully ask what services you are referring to - specifically. I have been a parent of a child with an Autism Spectrum Disorder for twelve years, have worked as an ASD Consultant in the Saskatoon Health Region, and have absolutely no idea what you are referring to. Are you talking about Cognitive Disability Strategy - which almost no families qualify for? Other than that, I can think of no service outside of the Health regions that would serve the Early Intervention needs of our children. Even in the case of older children who have specific,challenging behaviours such as self injury, property destruction or aggression, there is no place for parents to turn to address these behaviours. (And don't get me started on the kids under the care of Social Services or kids who are dumped in schools).

I would also urge you to take another look at the Lovaas study from 1987 that you keep referring to. It is clear that you have misread the study as everyone else who reads it, seems to understand that 47% of children in the treatment group who received 40 hours per week recovered from their symptoms of autism, which isn't to say that nothing went on with the rest of the children who underwent treatment.

Original research in peer-reviewed journals indicating that 90% of children substantially improved when utilizing the Lovaas Model of Applied Behavior Analysis, compared to the control group. Close to half attained a normal IQ and tested within the normal range on adaptive and social skills. -Lovaas Institute website. Not all children will achieve recovery, but all children will benefit from intensive therapy, their quality of life improves through developing skills that make them more independent,therefore less of a "burden" on the health care system as they age. This has been proven time and time again with research.

The cost for intervening when these children are small is great, but it is nothing compared to the cost of warehousing adults with autism who have no skills, poor social behaviour and in some cases no functional communication because they did not receive treatment early on.

I have offered my knowledge and experience numerous times to the government, and I daresay I could put you in contact with folks across this country who have much more knowledge and experience than I.

I am asking the government of Saskatchewan to please take me up on this, please, please put someone in charge who has an idea of what treatment looks like, instead of fumbling about in the dark with excuses.

Sincerely,

Shannon Hill, BCaBA"

Earth Day 2014 on Fredericton's North Riverfront Trail (Conor's Back Yard)

Today is Earth Day, 2014 and to celebrate this wonderful earth, and the life it supports,  I am posting a few of the pictures I have taken on Fredericton's North Riverfront Trail, also known on this site as Conor's Back Yard.

DSM or ICD, Either Way Autism is a DISORDER, or Group of Disorders, Not "Just a Difference"

There are a number of very high functioning persons claiming to be autistic or claiming to have a "syndrome" or "different way of thinking".  Autism is a difference not a disorder they cry out in anger against all efforts to find treatments and cures, such efforts usually led by parents and family members of severely autistic children and adults.  The great mystery to me is why they embrace the term "autism" to describe their "difference" but reject the label as representative of a medical diagnosis or disorder.

In my humble opinion it is very unfortunate that both the DSM-5 and the ICD-10 group the former Autistic Disorder, PDD-NOS and Aspergers Disorder/Syndrome under one label Autism Spectrum Disorder.  It if unfortunate that the differences between extremely high functioning, successful academics and business persons are grouped together with the 50% of the "autism spectrum" who suffer from intellectual disability many of whom will live out their lives in some form of adult care from group homes to psychiatric hospitals. 

One of the unfortunate results of the combining of these neurodevelopmental disorders, which actually began in earnest in the DSM-IV, is that some of the very high functioning persons, usually with Aspergers, attack all those including parents and other family members fighting for treatments and cures for their own family members with severe autism disorders.  These high functioning "auties" and "aspies" as some like to be called make good spokespersons for governments and organizations seeking to downplay the very severe challenges faced by those on the severe end of the autism spectrum.

One of the most puzzling aspects of the spectrum is the earnestness with which some of the anti-cure, anti-treatment, anti-family high functioning autistic persons claim that they do not have a DISORDER. It is puzzling because autism exists as a medical diagnosis, referred to as an Autism Spectrum DISORDER under BOTH the DSM-5, the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, and the ICD-10 Classification of Mental and Behavioural DISORDERS.  When and why did these individuals come to call themselves autistic if it was not done pursuant to medical diagnosis under one of these two leading diagnostic manuals or predecessor editions?

When my son with a severe  Autism Spectrum Disorder intentionally puts his hand through a glass window pane as he did last week, and has done in the past, it means that his autism is a disorder, not just a difference.  When my son goes from enjoying his activity on a swing set to hitting his head repeatedly, and with force, as he has done on many occasions it  means that his autism is a disorder not just a difference.  I have seen this lack of understanding and compassion and lack of respect for the views of parents and other family members who care for severely autistic loved ones from some  high functioning autistic persons for over a decade of autism advocacy.  I do not expect them to change, to abandon their adoration for the label autism. I do not expect them to recognize that those with severe autism actually suffer from a disorder.  My discussions with such individuals has given me no indication they would ever change their views on this subject.

What I would hope is that some day, academics and practitioners who have promoted the careers and perspectives of high functioning autistic persons and trivialized the challenges faced by those who suffer from severe autism disorders will start showing some integrity and professional responsibility whether they live in Montreal, Canada, New York, USA or Sydney, Australia. What I hope is that all academics and professionals will stop trivializing the severe challenges faced by so many with autism disorders and tell the world the whole truth about autism DISORDERS.

Autism is a disorder or group of disorders. Your professional and academic associations have said so and if you don't agree at least don't worsen the lives of the severely autistic for whom you lack interest or compassion; stop misrepresenting autism to the world as a gift or "just a difference". 

Canada's Autism Disgrace 2007: 2014 Update

Photo from Ameriquebec.net 

In December 2007 I wrote Canada's Autism Disgrace, describing the lack of a real National Autism Strategy in Canada.  It is now 2014 and nothing has changed. Canada still lacks a real National Autism Strategy. The words I wrote in 2007, reprinted below, are as true and accurate today as they were then:

What is Canada's National Autism Strategy? The answer is simple; we don't have one. And as long as Stephen Harper's Reform-Alliance-Conservative government rules Canada with an iron fist we will not have a National Autism Strategy. My friends of Conservative background in Canada may not like it but that is the hard brutal truth. Canada will not have a real National Autism Strategy as long as Stephen Harper is Prime Minister of Canada. 

We certainly had the beginnings of a National Autism Strategy with the passing of the Andy Scott-Peter Stoffer motion in the House of Commons. And MP Shawn Murphy fought the good fight with his private member's initiative; defeated in the House of Commons by the alliance between the Harper Conservatives and the separatist Bloc Quebecois. Senator Jim Munson has continued his valiant efforts to keep the need to address Canada's national autism crisis alive in the media but even those efforts are becoming more challenging as the Harper-Clement team simply ignores these initiatives, ignores the needs of autistic children and adults in Canada, and proves day in and day out that they don't give a damn about the fate of autistic Canadians. 

The National Autism Strategy of Prime Minister Harper really amounted to nothing but a mediocre web site and a promise of a National Autism Symposium. The National Autism Symposium was postponed when it became clear that real autism advocates, parents fighting for their autistic children, wanted to attend the symposium. A second symposium was scheduled for November 8 and 9 in Toronto. The invitation process was itself secretive, parents were largely unrepresented and any outspoken advocates were intentionally excluded from the Symposium. 

The lists of speakers and symposium themes were never made public. The list of Harper government, hand picked delegates, to the symposium was never made public although it is a good bet that anti-ABA activists like Michelle Dawson and Laurent Mottron would have been invited. The Quirks and Quarks duo rarely miss an opportunity to promote their fringe anti-ABA views, contrary to hundreds of studies over 5 decades and numerous reviews of those studies by organizations such as the US Office of the Surgeon General and the American Academy of Pediatrics, that ABA is a scientifically supported, evidence based, effective treatment for autism. Their long held, closed minded views, so at odds with mainstream professional opinion, come in handy when needed by a government seeking excuses to camouflage their do nothing approach to addressing Canada's National Crisis. Just a guess, but I am betting that the Harper team was quite happy to invite Mottron and Dawson to the invisible, forgotten, National Autism Symposium. 

The Autism Symposium went ahead on November 8 and 9 in Toronto and Canadians STILL don't know a thing about what was said; or what conclusions, if any, were reached. It is likely though that the Harper spin doctors will ultimately issue a summary indicating that there is lack of agreement on issues on the effectiveness of any one intervention in treating autism. The results of hundreds of studies over five decades of research, the reviews by the American Academy of Pediatrics, the Office of the US Surgeon General, the MADSEC Administrators, the New York and California state agencies, the Association for Science in Autism Treatment; all will be ignored. 

The views of a few fringe anti-ABA activists will be used to prop up a cynical do nothing Harper autism policy. And Canada's National Autism Strategy will remain as nothing more than what it now is - Canada's Autism Disgrace.

As I said in 2007 Canada will never have a National Autism Strategy as long as Stephen Harper is Prime Minister of Canada.  It is now 2014, Stephen Harper is still Prime Minister and Canada still does not have a National Autism Strategy, a real National Autism Strategy.

The Smiles Gang: Conor and LHHS Friends Had a Blast Last Night Going to See Rio 2 in 3D

L to R: Jesse, Christian, Kristen, Conor

Photo by Phyllis Van Dine-Humble 

This is one of my new favorite pictures of Conor, far right in the picture, taken last evening as Conor and some of his Leo Hayes High School friends went to see Rio 2 in 3D. Phyllis Van Dine-Humble took this awesome shot of the gang sharing tremendous smiles and having fun before the movie.  In attendance with Conor was excellent Education Aide, Lori Fitzgerald, who helps make every experience great for Conor. 

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.)

Gordon Porter's Vanity And Bill 61, An Act To Amend The Education Act, Will Result in MORE EXCLUSIONARY Education Practices in New Brunswick Schools

Gordon Porter believes that inclusive education is simple. Unfortunately most teachers, the NBTA organisation itself, aides and education administrators have been bullied and intimidated into following his simple philosophy unquestioningly even though they know it flies in the face of the truth. They know that many children are present in NB schools with complex learning, behavior, cognitive and sensory challenges which render education under any label anything but simple but they dare not speak out.  More and more children are, and with the current Bill 61, An Act to Amend the Education Act, more and more in future will be, excluded from NB schools as placement and learning options are reduced in favor of Mr Porter's regular classes and mindlessly simple philosophy.

The picture by Diane Crocker above and accompanying quotes are from the Newfoundland paper the Western Star article, "Inclusion in the classroom ‘simple,’ says educator", with highlighting added by me for emphasis:

"CORNER BROOK — Gordon Porter believes inclusion is the most natural thing in the world. The educator and director of Inclusive Education Initiatives presented a session on inclusive education at the Greenwood Inn and Suites on Thursday. Porter, who is also the editor of the Inclusive Education Canada website inclusive education.ca, spoke to parents, educators and agency professionals who deal with children with special needs at the pre-conference for the Newfoundland and Labrador Association for Community Living Conference taking place in the city today and Saturday. The session was sponsored by the Community Inclusion Initiative. 

 Porter’s session revolved around the theme of parents and teachers working together to make inclusion work.“It means kids go to their neighbourhood schools with kids their own age in regular classes,” said Porter.“If you’re seven years, old you go to the school just down the street. You go in a class with other seven-year-olds, and you’re supported if you have extra needs. “It’s so simple, it’s that simple,” said Porter."

Gordon Porter's vanity has led to exclusive education practices in New Brunswick schools.  I know this to be true, teachers, aides and administrators in NB schools and retired teachers know this to be true. The only ones who do not know this to be true are Gordon Porter who has aggressively pushed  his own simplistic, non evidence based,  non inclusive education on NB students and schools over the past 30+ years and his NBACL followers. Mr Porter's simple (his own words) philosophy has resulted, and continues to result, in more restricted range of options for placement of children with severe learning, behavior and cognitive challenges within New Brunswick schools. By restricting the range of placement options for NB students Mr Porter has forced numbers of students including students with severe autism, cognitive and behavior challenges out of their local schools to home based learning.  

In some cases students have been locked in rooms by themselves with no supervision, some have been charged with assault, some have banned from school premises.  When the Porter, everybody in the mainstream classroom, false inclusion philosophy fails the child is blamed and he or she is banned from the so called inclusive schools of NB.  

Mr Porter can receive dozens of ribbons to pin on his chest from countries with struggling education systems but the reality in NB is that education is rapidly becoming more exclusive, less inclusive, as options that might accommodate persons with severe autistic, cognitive, sensory and obsessive behaviors are simply eliminated from schools.

My interest in the false inclusion in NB schools arises from my son's severe challenges.  He has in fact been accommodated ... by individualized instruction outside the regular classroom with ample socialization at the local swimming pool and gym and daily connection with other children in the Leo Hayes High School Resource Centre, an excellent, practical, evidence based and truly inclusive resource for children with extra needs.  The LHHS Resource Centre though is at serious risk as Gordon Porter continues to push entrenchment and expansion of his exclusionary policies in NB schools. 

My son's alternative arrangements came about in part because of our advocacy on his behalf.  I happen to be a lawyer and have some professional skills that are of assistance in communicating with education officials and advocating for our son. Some other parents are not as fortunate and some have more than one child with extra needs. 

With respect to autism spectrum disorders the University of North Carolina TEACCH program which has substantial influence in academic and professional autism circles has articulated the following position statement (underling added by me for emphasis) on inclusion of children with autism one which calls for a range of placement options.  It is an evidence based position which recognizes the heterogeneity of autism disorders and the range of accommodations required:

"TEACCH's position on inclusion of children with autism:

1. The TEACCH program recognizes the important value of preparing all persons with autism for successful functioning within society. Each person with autism should be taught with the goal of successful functioning with as few restrictions as is possible.                                                            
2. Decisions about including children with autism into fully integrated settings must be made consistent with the principle of the "least restrictive environment" as a guiding principle. No person with autism should be unnecessarily or inappropriately denied access to meaningful educational activities. However, it should be noted that the concept of least restrictive environment requires that appropriate learning take place. Placement decisions also require that students be capable of meaningful learning and functioning within the setting selected
3. Activities which are inclusive for children with autism should be offered based on an individual assessment of the child's skills and abilities to function and participate in the setting. Inclusion activities are appropriate only when preceded by adequate assessment and pre-placement preparations including appropriate training. Inclusion activities typically need to be supported by professionals trained in autism who can provide assistance and objective evaluation of the appropriateness of the activity.
4. Inclusion should never replace a full continuum of service delivery, with different students with autism falling across the full spectrum. Full inclusion should be offered to all persons with autism who are capable of success in fully integrated settings. Partial inclusion is expected to be appropriate for other clients with autism. And special classes and schools should be retained as an option for those students with autism for whom these settings are the most meaningful and appropriate.

Mr Porter's obsession with everybody in the classroom philosophy will hurt many more children as it becomes even more entrenched by the current Bill 61, An Act to Amend the Education Act, which will, once passed into law, give greater legal status to Mr Porter's false notion of inclusion. The principle that the evidence based best interests of the child should be a dominant consideration in setting school policy will now be challenged by Mr Porter's inclusion illusion.  More and more NB students will be forced from NB schools into home based learning.  

Once Canada's Autism Wasteland Has Saskatchewan Made Any Meaningful Progress?

Apparently Saskatchewan is still having difficulty providing necessary levels of early autism intervention.  I once described it in a September 2, 2007 commentary as Canada's Autism Wasteland:  Canada's Autism Wasteland To Take First Step Forward.   At the time of my commentary Saskatchewan was one of the few provinces with no intervention program for autistic children.  

A recent Global News article by Amber Rockliffe, Saskatchewan Families Moving Due to Lack of Autism Funding indicates that not enough hours of intervention are being delivered to Saskatchewan's autistic children and some families are moving out of province to find the help their children need:

"Sheri Radoux, has moved south of the U.S. border to Minnesota. “I think the services in Saskatchewan are probably the worst in Canada or one of the worst in Canada,” said Radoux. “We moved down to Minnesota and we got full-time therapy for all of our children, paid and funded by the state.” Saskatchewan spends about $7.5 million annually on autism treatment and services. ...   ..... “When we were looking, you could get one hour a week of therapy. And that’s like saving a sinking boat with a thimble,” explained Radoux."

With respect to the number of intervention hours received by Saskatchewan's autistic children The Global News article references Shannon Hill, mother of an autistic child:

“Hill, who now works with autistic children herself, says many of them receive only several hours of behavioural therapy a week. It’s basically a waste of money on the government’s part because it doesn’t produce any outcomes.”

Article author Rockliffe obtained information that the province's Ministery of Health had increased autism funding 1400 per cent.  The funding has apparently not resulted in delivery of autism intervention to autistic children at anywhere near required levels. 

IDEA Disorder, Intellectual Disability-Epilepsy-Autism Disorder, On World Autism Awareness Day

Conor  a year ago at the local ICU where he stayed for 6 days while the ICU professionals worked to save his life and return him to us in good health after a serious adverse reaction to his seizure medications.  Other parents of children with severe autism disorders and intellectual disabilities should be made aware that their children are at very substantial risk of seizure activity particularly with the onset of adolescence.  We didn't know these well established relationships with any certainty until our son started experiencing them. 

April 2 will be another World Autism Awareness Day in which the harsh realities that many with autism disorders live with will once again be hidden from public sight.  Everyone will wear their blue shirts (including Conor and me)  and many will put blue lights in front of their homes, businesses and legislatures.  The Autism Feel Good crowd will tell everyone that autism is a difference not a disability and some will tell the world that historical geniuses in every field in the sciences, math, literature, art from Van Gogh to Einstein were probably autistic. 

A misconception underlying much of the WAAD false awareness is found in the DSM assertion that there is one autism disorder with only 2 diagnostic criteria: Social communication/social interaction deficits and  Restricted, repetitive patterns of behavior, interests, or activities. The DSM does also reference various "comorbid" conditions sometimes found in connection with autism including several from which my now 18 year old son has suffered along with his severe autism disorder: wandering, self injurious behavior, reactive aggression, absence seizures and tonic clonic seizures.  The DSM categorization of disorders, as none other than NIMH Director Dr Tom Insel has pointed out, have no solid evidence basis for its conceptualizations of disorders. TheyDSM categories lack validity. So said Dr Tom Insel before he repeated it again (sort of) but stated that he only meant it for research not clinical purposes. 

One of the areas in which the DSM5 erred egregiously (in the humble opinion of this lowly father of an 18 year old son with severe autism disorder, intellectual disability and epileptic seizures)  was to combine the 3 varied and distinctively different disorders of Autistic Disorder, PDD-NOS and Aspergers into one "spectrum" disorder.  Renowned autism experts , including such authorities as Lynn Waterhouse, in Rethinking Autism: Variation and Complexity,  have started to explicitly describe "autism" as a varied, complex and heterogenous group of disorders or symptoms. Dr Waterhouse has again written on the subject of autism heterogeneity in a paper co-authored with Christopher Gillberg, (2014) Why Autism Must Be Taken Apart, the abstract of which states:

"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.”

I am not an autism expert. I am the father, as I have stated, of an 18 year old son with autism, intellectual disability and seizure activities becoming most pronounced during his teen years when absence seizures became frequent and eventually became identified with grand mal or tonic clonic seizures.  As I have confessed, this pseudo tough guy was scared stiff to hear the sounds emitted by my son's body during the onset of his first tonic clonic seizure, to find him laying on his side his body jerking violently with drool oozing out of the cornier of his mouth.  He suffered two such seizures and a life threatening adverse reaction to his first seizure medication (Rhabdomyolysis)  which landed him in the ICU (Intensive Care Unit) of the local hospital where the ICU team saved his life and gave him back to us.

My son's condition is recognized in many autism study statistics. The World Health Organization, 2013, estimates that approximately 50% of persons with autism disorders also have an intellectual disability.  To me that large a number is not a "coincidence" or a "comorbidity" whatever that term is meant to signify in the real world. To me my son's autism and intellectual disability are aspects of one brain disorder.  

Given those two aspects of my son's brain disorder it should not have come as a surprise to me that he might be at very substantial risk of suffering seizures, particularly with the onset of his teen years.  The scientific literature indicates that persons with autism spectrum disorders have a much higher rate of epilepsy than the general population; as high as 30%.  The literature also indicates that, among persons with autism. the rate of those who also have epileptic seizures is substantially higher among those with .... intellectual disability and the seizures often become apparent during the teen years ... exactly what happened to my son with severe autism and intellectual disability. 

My son's autism is not the autism of Temple Grandin, Michelle Dawson or Ari Ne'eman.  He was diagnosed early 16 years ago at age 2 years because of the severity of his diagnostic symptoms and the tenaciousness of his mother who pressed our good doctors the hardest for a medical understanding of our son's condition.  

Still with the autism and ID we did not anticipate the onset of seizure activities. This humble father recommends strongly that on World Autism Awareness Day, Autism Speaks and other autism organizations should be honest with people around the world and tell them that where autism is present in a child there is a substantial risk of epileptic seizures.   

I also humbly recommend that the great autism thinkers of our day should consider looking at and studying instances of combined Intellectual Disability, Autism and Epilepsy as one group of conditions that might have a common origin in the brain as I believe to be true based on living with my son for 18 years. 

IDEA Disorder, Intellectual Disability-Epilepsy-Autism Disorder.  By all means reject it if you believe based on study and evidence that it is unsound but don't reject it solely because a lowly parent makes the suggestion.  I have 18 years of 24/7 experience living with these conditions in my son. Statistics and professional expertise obviously count and in our society are determinative but the direct observation and experience of parents should not be ignored or ridiculed as it is all too often. 

USA's 1 in 68 Autism Rates and Canada's Fake National Autism Strategy

"At present there is no government monitoring system in place to provide us with accurate statistics on the prevalence of ASDs in Canada" 

Autism Society Canada 

The recent USA CDC reports that US autism rates are now estimated at 1 in 68 highlights, yet again, the lack of a Real National Autism Strategy in Canada. One of the few specific commitments made by the federal government over the years was a commitment to conducting a national surveillance program of Canadians with autism disorders.  As the above quote from the Autism Society Canada web site makes clear that has not happened.  Canadians must simply assume that US autism rates, now 1 in 68, also apply here in Canada. 

Canadian parents fought initially , and ultimately unsuccessfully, through the courts in BC (Auton) and Ontario (Wynberg/Deskin) for autism treatment coverage under medicare and autism services before commencing their more overtly political efforts, including the Medicare for Autism NOW! campaign.  Here in the Maritime provinces we took a political approach to developing a national autism strategy with the NB efforts in  which I was personally involved beginning  in 2001, primarily by many discussions with our Fredericton MP, the late Andy Scott.  In 2003  Andy Scott, made a public commitment in 2003 to work toward a National Autism Strategy at a tribute to his 10 years of service as an MP at the Boyce Famers' Market, an event I attended and reported on to the members of the Family Autism Centre for Education (FACE):

"October 19 2003

Hello everyone:

Some good news for those interested in autism issues emerged last night  at the Boyce Farmers' Market in Fredericton New Brunswick as Frederictonian's gathered to pay tribute to MP Andy Scott's  10 years of service as an MP on behalf of Frederictonians and as an advocate for human rights, services for the disabled, and cultural harmony. Andy announced that he would be meeting with Paul Martin in the hopes of pursuing a national Autism strategy. Although health care is primarily within provincial juridiction some health issues, such as breast cancer, HIV, etc. have been approached on a national level because of the magnitude of the issues involved.  While we have all heard political promises in the past,  Andy Scott has a proven track record of commitment to, and follow through on, disabilities and human rights issues.  Great news.

Harold Doherty

Family Autism Centre for Education (FACE)"

Andy's comments at the Boyce Farmers' Market were also featured in a 2003 Telegraph Journal article by Tali Folkins:

"Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." 

Andy did answer the call on behalf of autistic Canadians and  actively pushed for a National Autism Strategy which he ultimately realized with the passage of Motion M-172.  However, the motion was essentially a commitment in principle with few obligations being undertaken by our federal government but it did help put autism on our national agenda and it was Andy Scott being Andy ... getting done what could get done ... with a view to moving forward further in future.  One of the specific items that the federal government did commit to in the motion was a national surveillance program, a program that would tell us how many Canadians now suffer from autism disorders.  It is a commitment that has still not been honored 8 years later. 

Andy Scott himself did continue the fight   as demonstrated in his June 5, 2007 statement in the House of Commons:

"Autism 

[Table of Contents]

Hon. Andy Scott (Fredericton, Lib.):

Mr. Speaker, it is regrettable that we have seen little action by the government toward implementing a national autism strategy.

It has been more than a year since I introduced Motion No. 172. My private member's motion called for evidence based standards, innovative funding arrangements for diagnosis, treatment and research, and a national surveillance program.

The motion was adopted in good faith and supported by the government. However, it was very disappointing to see no reference to a national autism strategy in the recent budget or any discussion this spring.

Recently, I joined my colleagues from Charlottetown and Sackville—Eastern Shore and Senator Munson at a rally in Halifax that reinforced that there are families with autistic children across Canada who need the government's help.

The Conservatives should move off their default position of jurisdictional excuses, show creativity and compassion and start helping these Canadians."

Andy Scott's reference to his colleagues from Charlottetown and Sackville-Eastern Shore were  references to PEI's Shawn Murphy and Nova Scotia's Peter Stoffer both of whom, along with Andy Scott and Senator Jim Munson, also worked tirelessly toward achieving a National Autism Strategy.  The rally of which he spoke was a Halifax rally organized by Jean Lewis and FEAT-BC who had been raising autism awareness, lobbying politically and fighting for national autism coverage in the Courts for several years and continued to do so with its "Medicare for Autism NOW!" efforts.  I attended the FEAT autism really in Halifax and had the privilege of meeting Jean Lewis, several of the BC advocates and tireless Nova Scotia autism advocate Jim Young.  Under the BC leadership there have been subsequent national meetings in Oakville and Toronto.

NB MP Andy Scott, FEAT-BC, Medicare for Autism NOW!'s Jean Lewis

National Autism Rally, Halifax, May 26 2007

NS MP Shawn Murphy, Senator Jim Munson, NB MP Andy Scott 

National Autism Rally, Halifax, May 26 2007

Nova Scotia MP Peter Stoffer,  National Autism Rally, 

Halifax, May 26 2007

In 2006 Shawn Murphy went on to introduce his own private member's bill, Bill C-304,  in the House of Commons which, if passed, would have put Canada well on the way to establishing a REAL National Autism Strategy:

C-304

First Session, Thirty-ninth Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

_____________________________________________

FIRST READING, MAY 17, 2006

_____________________________________________

MR. MURPHY (Charlottetown)

1st Session, 39th Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

An Act to provide for the development of a
national strategy for the treatment of
autism and to amend the Canada Health
Act

Her Majesty, by and with the advice and
consent of the Senate and House of Commons
of Canada, enacts as follows:

SHORT TITLE

1. This Act may be cited as the National
Strategy for the Treatment of Autism Act.


NATIONAL CONFERENCE

2. The Minister of Health shall, before
December 31, 2006, convene a conference of
all provincial and territorial ministers responsible
for health for the purpose of working
together to develop a national strategy for the
treatment of autism. The Minister shall, before
December 31, 2007, table a report in both
Houses of Parliament specifying a plan of action
developed in collaboration with the provincial
and territorial ministers for the purpose of
implementing that strategy.

AMENDMENTS TO THE CANADA
HEALTH ACT

3. Section 2 of the Canada Health Act is
renumbered as subsection 2(1) and is
amended by adding the following:

(2) For the purposes of this Act, services
that are medically necessary or required under
this Act include Applied Behavioural Analysis
(ABA) and Intensive Behavioural Intervention
(IBI) for persons suffering from Autism Spectrum
Disorder.

Bill C-304 was defeated soundly by a coalition of Harper Conservatives and separatist Blog Quebecois votes in the House of Commons. During debates in the House of Commons Harper conservative MP Mike Lake from Alberta, the autism face of the Harper government, a father of an autistic son, fought against the Murphy bill and helped vote it down to defeat.  

The hard truth is that there will never be a real National Autism Strategy as long as the Harper government rules in Ottawa.  Nor will a REAL NAS emerge from national autism charities that were never part of the struggle for a national autism strategy to begin with and who do not acknowledge the efforts made by parents across Canada who fought hard and long for a National Autism Strategy. National charities dare not speak contrary to federal government policy for fear of risking their charitable status. 

A real National Autism Strategy, even a real, current estimate of the number of Canadians who suffer from autism disorders will not come into existence until the Harper government is retired from office and will only come into existence with parent driven initiatives for whom helping their autistic sons and daughters is their most important objective.   Until then we will have to accept US figures for autism prevalence.  Accordingly, let it be known:

1 in 68 Canadians has an autism spectrum disorder.