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. 

Purple Day - Increasing Public Awareness About Epilepsy

Today is officially Purple Day in Canada. Founded by Cassidy Megan of Nova Scotia, it is a day to wear purple to increase epilepsy awareness in Canada, around the world, and in homes like ours where our son Conor, like many with autism disorder and intellectual disability, also suffers from epileptic seizures.  Given the substantially greater numbers of persons with autism, particularly when they also suffer from intellectual disability, awareness should also make that increased prevalence known in the autism community.

Conor had suffered from absence seizures that we were aware of for several years.  In 2013-2014 he suffered 2 tonic-clonic seizures, formerly known as grand mal seizures which scared the heck out of me; alone at home with him at the time.  He also suffered a major adverse reaction (hospitalized for 2 weeks, including 6 days in the Intensive Care Unit) to his seizure medication at that time,  (Lamotrogine), which is reported to be highly effective for most who take it to control and prevent seizures.  As has been reported by SFARI (Simon's Foundation Autism Research Initiative) teens like Conor,  with autism and intellectual disability, are at increased risk of epileptic seizure:

"Children with autism who are older than 13 years and have low intelligence are at the greatest risk of having epilepsy, says one of the largest epidemiological studies on the issue to date¹. Children are typically diagnosed with epilepsy after having at least two seizures — uncontrolled surges of electrical activity in the brain. About 2 percent of the general population has epilepsy². Most studies peg its prevalence among people with autism at 30 percent.

The new study, published 4 July in PLoS One, breaks down this prevalence by age. It finds that among children with autism, up to 12.5 percent of children aged 2 to 17 have epilepsy. The rate is largely driven by epilepsy in children aged 13 to 17, who have more than double that prevalence. The study also found that low intelligence — defined as having an intelligence quotient (IQ) below 70 — is associated with a cluster of symptoms seen in people who have both epilepsy and autism. The symptoms include difficulty with daily living, poor motor skills and language ability, regression and social impairment."

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

NOTE: Epilepsy Canada's web site has important facts and information about epilepsy including types of seizures, diagnosis and treatment, and generally how to cope with seizures. 

March 26 is officially recognized across Canada as Purple Day thanks to the 2012 Purple Day Act:

Purple Day Act
 S.C. 2012, c. 13
Assented to 2012-06-28

An Act respecting a day to increase public awareness about epilepsy

SUMMARY

This enactment designates the 26th day of March in each and every year as “Purple Day”.

Preamble

Whereas the Parliament of Canada wishes to assist in efforts to educate and increase awareness, among members of the public, about people living with epilepsy;

Now, therefore, 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 Purple Day Act.

PURPLE DAY

Marginal note:Purple Day

2. Throughout Canada, in each and every year, the 26th day of March is to be known as “Purple Day”.

Marginal note:Wearing purple

3. On the 26th day of March, people are encouraged to wear the colour purple to indicate their support for people with epilepsy and to increase public awareness of this disorder.

Marginal note:Not a legal holiday

4. For greater certainty, Purple Day is not a legal holiday or a non-juridical day.

Through the Cracks: For Adults With Severe Developmental Disabilities Huge Gaps Remain

The philosophical, feel good, cliches of the Canadian Association for Community Living and its provincial organizations such as the New Brunswick Association for Community Living paint a pretty picture of a bridge permitting those with severe disabilities to cross over to a wonderful life in the community. 

The reality  is much different, particularly for those with severe autism disorders, intellectual disability, epileptic seizures and other poorly understood conditions. For them there are huge gaps and no bridge at all.  

Government should be held accountable but so too should organizations like the CACL and the NBACL who provide cover for governments by continually opposing efforts to develop modern, secure, decent, professionally run facilities between the levels of the untrained, unsupervised, inadequate group homes and the psychiatric and medical hospitals where many with severe developmental disabilities are dumped out of sight and mind of all including the CACL and the NBACL.


The United Church Observer article, Through the cracks, by  Kevin Spurgaitis,  tackles issues relating to the lack of available care for adults with severe developmental disabilities including autism disorders.  Simply by addressing, and shining a spotlight on the lack of places that can provide permanent residential care to those with autism disorders they have helped to address the hard realities faced by many with severe developmental disorders including severe autism.  I was interviewed by telephone by Kevin Spurgatis, who was exceptionally courteous and respectful, qualities which show up in the article itself.  I thank Kevin Spurgaitis and the United Church Observer for their effort.   

It will probably come as no surprise though, to anyone who knows me on a personal level, or knows my views on disabilities and the role played in Canada by the Canadian Association for Community Living and its New Brunswick version the New Brunswick Association for Community Living, that I believe Mr Spurgaitis's article does not address the responsibility of the CACL and provincial divisions like the NBACL  for their roles in creating the cracks through which people like my son with severe autism disorder, intellectual disability and seizures fall.

The feel good and rigid anti-institution mindsets of these organizations have helped prevent the development of facilities which would provide permanent residency, care by properly trained caregivers and treatment for their serious conditions.  The ACL organizations persistently argue against anything that might be labelled an "institution" even if there is no alternative available.  In doing so the NBACL has helped push NB'ers with severe autism disorders to lives spent in the Restigouche Psychiatric Hospital, to hospital wards and to facilities out of province such as the Spurwink facility in Maine. 

This is not speculation on my part. I have participated in several education and adult disability reviews in New Brunswick in which NBACL representatives have fought bitterly against any meaningful attempt to develop the necessary facilities to ensure a quality life for those, like my son who suffer from severe autism, intellectual disability and seizures. As long as the NBACL continues providing feel good cliche coverage to governments for failing to provide a modern residential care and treatment facility  to those with severe needs, people like my son will suffer much more limited lives.  Here in New Brunswick our government's favorite charity organization, the NBACL, is a major contributor to the problem, they help ensure that people like my son will continue to fall through the cracks.

Although my views diverge from the portrait of the CACL and their provincial counterparts as set out by Mr. Spurgaitis and the United Church Observer I do genuinely appreciate the fact that they have raised the issue.  As I said I also appreciate, very much, Mr. Spurgaitis' courteous, respectful questioning and his inclusion of severe autism disorder in his article.

Early Autism Identification Breakthrough? That's Funny, Conor Was Diagnosed 16 Years Ago At Age 2!

Above: Conor last month leaving school with his Mom on his 18th birthday 

Below: Conor 16 years ago on his 2nd birthday.  The next day he received 

his autism diagnosis. 

Our son Conor recently turned 18.  He has an autistic disorder diagnosis.  He was originally diagnosed the day after his 2nd birthday.   As parents we were concerned about developmental and sensory issues almost 1 year earlier and sought medical advice. At the time neither my wife Heather nor I had heard much about autism but we had observed issues with Conor's development.

Conor's brother, 19 months older, had begun speaking at a young age and was engaging in full adult level conversation by age 2.  (A retired teacher in Burlington had stopped at our table in Tim Horton's and asked how old he was. When I told her he was 2 she was astonished and said she had taught primary school for almost 50 years and had never seen anything like it.) Conor by contrast had little speech and exhibited different behaviors like pressing his face on the floor of a Burlington mall to feel the coolness, pressing his face against the plastic in the swing set in out living room for extended times,  or pointing to a circular metal floor ring around an outlet  in the floor tile in the mall and saying "circle" before he ever said mom or dad; and not using many words at all.   

Shortly after Conor's 1st birthday we were returning to live in New Brunswick where my wife sought medical attention for him.  Our family doctor referred us to a pediatrician who conducted tests over a period of several months, including referring Conor for hearing tests to determine whether hearing was or was not a factor.  Conor received his autism diagnosis the day after his 2nd birthday ... 16 years ago.  

Only now are autism researchers confirming that autism diagnoses can be made as early as 1 to 2 years? Our son's diagnosis at age 2 after almost a year of looking for answers (we had never heard much about autism we were just looking for an understanding of our son's condition) proved that possibility 16 years ago.  Great to see confirming research  but I have to wonder if such research should be hyped as breakthroughs? Maybe autism researchers should not be so dismissive of parents anecdotal information after all?

One such study is referenced on the Medical Express web site article of March 18, 2014"Autism signs can be identified earlier than formerly thought":

(Medical Xpress)—Many characteristics of Autism Spectrum Disorders can be identified by the age of 2 and are predictive of which children will be diagnosed with these disorders when they're older, a new study suggests.  Researchers at the University of Illinois identified a number of behavioral problems and developmental deficits – including many associated with communication and language, social interaction and self-regulation – that if present when children were 2 years old were predictive of their receiving an ASD diagnosis by age 4. "We've found that you can identify autism early – around 2 years old," said lead author Laurie M. Jeans, who conducted the study as a graduate student at Illinois. "Different specialists who work with children with ASD are each focused on specific problems, but this research gathers all those pieces of information together and provides a much bigger picture."

Research Into Early Autism Interventions - La Trobe University Olga Tennison Autism Research Centre (OTARC)

Another excellent, thorough discussion from LaTrobe University's  Olga Tennison Autism Research Centre (OTARC) focusing this time on early intervention research. 

 
"Published on 16 Mar 2014

Dr Kristelle Hudry, Dr Giacomo Vivanti, Dr John McEachin discuss the development and trends of research into early intervention. Topics covered include the neurodiversity v intervention debate, barriers to research into interventions: historical tendency to prefer high functioning autism, lack of understanding about how children learn, lack of sector accepting evidence of research, general lack of scientific culture, priorities of research funders, the problems of randomised control trials as best practice scientific design."

Autism Reality Check: Autism Is Not A Person - It Is A Disorder, A Group of Disorders or A Group of Symptoms

Autism is not a person.  

Autism is defined by some authorities as a disorder, by others as "autisms" or a varied group of complex heterogeneous disorders and by still other authorities as a group of symptoms which together have come to be referred to as "autism".  Autism is not, however, a person and because of that indisputable fact it can not sign petitions lobbying government institutions to abolish legislation passed to fight autism.  Autism can not oppose the rights of actual persons to be cured or treated for autism and can not oppose the rights of parents and other legal caregivers to seek treatments and cures for those actual persons with autism for whom they love and for whom they are responsible to provide care for and who actually do provide such love and care along with the best lives they can within their means and abilities. 

cc: Alleged "Thinking" Persons Guide to Autism

      Alleged Autism "Self" Advocacy Network

Stanford Study Provides False Hope For Many Parents, Misrepresents Autism Disorders By Excluding Subjects With Intellectual Disability

A Stanford study which excluded autistic subjects with intellectual disability is being used to spread the false notion that autism is not a disability ... just a difference. This misrepresentation of autism disorders appears in the August 16, 2013 San Jose Mercury News (I added the underlining, HLD):

"Autistic kids with math abilities show different brain patterns

By Lisa M. Krieger

lkrieger@mercurynews.com

"Stanford researchers have unearthed clues about the formidable brains of some autistic children, suggesting that the diagnosis may signal a different cognitive style, not disability. 

Superior math skills were found in autistic Bay Area children with average intelligence compared with matched children who were not autistic. The two group's brain scans were different, as well. Images of the autistic children's brains while calculating math problems revealed a different pattern of activity than those of non-autistic children.

This small but important study, the first of its type, "makes us better aware of the unique talents that these people have, which could help them have better academic and professional lives," said postdoctoral scholar Teresa Iuculano, lead author of the study. "We think it could be reassuring for parents," she said. The study is being published online Saturday in the journal Biological Psychiatry. Like all people with autism, the children had difficulty with social interactions. But they showed strengths, as well, according to the team of scientists at the Stanford University School of Medicine and Lucile Packard Children's Hospital.

"It is not necessarily a deficient brain, but a different brain," said Iuculano."

There is no mention of the fact that approximately 50% of persons with autism disorders have intellectual disabilities according to the World Health Organization, have intellectual disability. The San Jose Mercury News article does go on to acknowledge that some persons with autism may also suffer from profound "retardation" but downplays it by going on in the same sentence goes to state some also have savant abilities.:

"Autism comes in many forms. It can be a devastating diagnosis with profound retardation. But people can also have exceptional skills or talents, known as "savant" abilities."

The Stanford School of Medicine report on the study wasn't any better in  so far as it describes the study as  involving only high functioning autistic subjects but makes no mention of the 50% with autism AND intellectual disability. It generalizes the results to persons with autism and while it does refers to deficits in autism it refers only to social communication deficits, repetitive behaviors and restricted interests. The article makes no mention of the intellectual disability which restricts the lives of approximately 50% of persons with autism disorders:

"Children with autism and average IQs consistently demonstrated superior math skills compared with nonautistic children in the same IQ range, according to a study by researchers at the Stanford University School of Medicine and Lucile Packard Children’s Hospital.

 

There appears to be a unique pattern of brain organization that underlies superior problem-solving abilities in children with autism,” said Vinod Menon, PhD, professor of psychiatry and behavioral sciences and a member of the Child Health Research Institute at Packard Children's.

The autistic children’s enhanced math abilities were tied to patterns of activation in a particular area of their brains — an area normally associated with recognizing faces and visual objects.

Menon is senior author of the study, published online Aug. 17 in Biological Psychiatry. Postdoctoral scholar Teresa luculano, PhD, is the lead author.

Children with autism have difficulty with social interactions, especially interpreting nonverbal cues in face-to-face conversations. They often engage in repetitive behaviors and have a restricted range of interests.

But in addition to such deficits, children with autism sometimes exhibit exceptional skills or talents, known as savant abilities. For example, some can instantly recall the day of the week of any calendar date within a particular range of years — for example, that May 21, 1982, was a Friday. And some display superior mathematical skills. "

.................

The research team is now gathering data from a larger group of children with autism to learn more about individual differences in their mathematical abilities. Menon emphasized that not all children with autism have superior math abilities, and that understanding the neural basis of variations in problem-solving abilities is an important topic for future research." 

Autistic Children Need Help, Not Delays: Toronto Star Editorial

In Autistic Children Need Help, Not Delays The Toronto Star has spoken out clearly in support of children with autism disorders in Ontario. The Star's message applies in most jurisdictions across Canada.  While the Star focuses on Ontario the same logic applies across Canada. Canadians and some conscientious, concerned political leaders including the late Andy Scott from Fredericton, Shawn Murphy from PEI, Glenn Thibeault from Ontario, Peter Stoffer, Nova Scotia, the late Jack Layton and NB Senator Jim Munson spoke out in support of a strong Real National Autism Strategy which, if one had been adopted would have ensured better lives for many children with autism disorders.  The fact that these children are missing out rests squarely on the shoulders of Prime Minister Stephen Harper, his "autism dad" front man Mike Lake and their partners in the Bloc Quebecois who opposed meaningful national help for autistic children in Canada. 

"Published on Sun Mar 09 2014

Now that Premier Kathleen Wynne is busy rebranding herself as the crusader for open government, it’s worth noting that accountability also extends to promises that remain unfulfilled.

One of the most heartbreaking issues facing many Ontario parents is the government’s failure to help children with autism, especially in the first few years of life when dramatic improvements are possible — with proper treatment. How sad that so much potential is lost, all because young children can’t get specialized therapy when the brain is malleable enough to change.

As the Star’s Andrea Gordon reports, four different committees and investigations into the fragmented, confusing and overburdened autism system continue to hear the same concerns, except now the problems are worsening.

In order to provide accountability to these families, Wynne must pay attention to their struggles and help parents, many of whom have reached the breaking point. One particularly egregious failing, as the government well knows, is the red tape that forces families to spend months on a waiting list to get a psychological assessment that will decide whether a child will spend years — on another waiting list — for therapy. It’s tragically ridiculous.

It can take some four years to get proper therapy, which leaves many parents so desperate they take on massive debts to pay for the only other option, expensive private treatment. Those who can’t raise the cash are left to accept whatever help their children are offered, which often arrives too late.

All of these problems were documented in a 2012 Star series on autism, which inspired a promise from the Liberal government for a blue-chip panel of experts to report on improvements to policies and services for people with autism. It was a significant step forward.

While the committee’s worthy work is ongoing, it has no control over government funding and since the government has yet to make any dramatic changes, the problems continue.

Wynne must find the money to get children off those waiting lists and into proper, long-term treatment. And that’s just the start. The patchwork system should be dismantled and recreated as a new, streamlined service that helps instead of hinders.

To be fair, some improvements have been made, such as increased supports for young people transitioning from high school to post-secondary studies. That’s certainly beneficial.

And there’s hope that a Queen’s Park all-party committee on development services will make good recommendations, which are expected in May. Its recent interim report poignantly noted the value of proper treatment, as told by the grandmother of two autistic boys: The first, she said, had to wait four years for therapy and by then he “regressed, his behaviours became ingrained and the window of opportunity was missed.” When the second boy was diagnosed, his family immediately sent him to private specialized therapy and he’s now a successful student in a regular school.

It’s about potential. Accountable governments should help children with autism achieve it."