Support and Care for Individuals with Autism Spectrum Disorder in New Brunswick - The Report of the University of Calgary School of Public Policy

"Autism spectrum disorder (ASD) is a lifelong neurological condition estimated to affect as many as one in 88 children. It is now the most common neurological disorder affecting children and one of the most common developmental disabilities. Many individuals living with ASD will need some level of support over their entire lives. In cases where adolescents and adults with severe autism are placed into long-term care or other supported housing arrangements the annual cost of housing, which includes caregiver time, can be $400 per day, amounting to approximately $150,000 a year.  Few Canadian families generate sufficient income to cover such high costs of support. Even where families with ASD dependents have income to pay for some of the required care needed, they face challenges finding available and qualified caregivers. Unfortunately, as families of ASD dependents age or become financially unable to care, it is not obvious how their adult with ASD will be supported other than with the burden falling on the state." 

The Value of Caregiver Time: Costs of Support and Care for Individuals Living with Autism Spectrum Disorder - University of Calgary School of Public Policy 

New Brunswick Social Development Minister Madeleine Dubé has acknowledged receipt of the University of Calgary School of Public Policy report.  The immediate reaction to this information may be "So What?"  The fact is we, as parents, as caregivers, as advocates for our children and others with autism and related disorders, must ensure that all relevant information is placed before government decision makers.  It is part of what we did here in New Brunswick in advocating for evidence based early intervention and school services for children with autism and for  the continuation of the tertiary care program at the Stan Cassidy Centre Autism Rehabilitation Services team. It may not seem as exciting as some of the high profile campaigns that hit the New Brunswick media but it is, in my humble opinion, of fundamental importance in advocating for evidence based, humane autism support services across the lifespan of children, youth and adults with autism and related disorders.  

SFARI, Once Again, Continues Misrepresenting High Functioning Autism/Aspergers Only Research As "Autism" Research

SFARI blog article depiction of a resting "Autism" brain accompanying

 review of study employing only Aspergers subjects as representing 

"autism" for comparison with non autistic resting brains

SFARI continues its agenda of misrepresenting high functioning autism/aspergers only studies as representing "autism".  It has published, on its blog page, several study reviews employing only high functioning autism or Aspergers subjects as "autism" studies, knowing that the "Autism Spectrum Disorder" is marked by substantial variation, complexity, heterogeneity.  The World Health Organization, September 2013 indicated that 50% of persons on the "autism" spectrum also have intellectual disabilities.  The fact that intellectual disability is so heavily represented on the autism spectrum  has been known to extremely well informed, exceptionally intelligent sources like SFARI for decades as articulated by CDC autism expert Dr. Marsha Lynn Yeargin-Allsopp who stated that the intellectually disabled represented the "vast majority" of persons on the pre-DSM-IV autism spectrum. Yet SFARI  publishes articles and titles  equating "Aspergers" or "high functioning autism" with the entire autism spectrum as it has done again with its review of a study of activity in resting "autism brains" (emphasis added):

'Resting' autism brains still hum with activity

Maia Szalavitz

21 February 2014

"Even at rest, the brains of people with autism manage more information than those of their peers, according to a new study that may provide support for the so-called ‘intense world’ theory of autism.

The research, which was published 24 December in Frontiers in Neuroinformatics, included nine children with Asperger syndrome, aged between 6 and 14 and ten age-matched typical children. The researchers scanned their brains using magnetoencephalography (MEG), a noninvasive method that doesn’t require lying in a noisy, confined space as magnetic resonance imaging does.?"

SFARI publishes a disclaimer on the bottom of its blog page stating that "News and Opinion articles on SFARI.org are editorially independent of the Simons Foundation." The disclaimer may well provide SFARI with protection against any hypothetical legal liability for the contents of its blog pages but it does not change the reality that SFARI determines who can publish on its site and is helping to promote a gross misrepresentation of the nature of autism disorders by helping equate Aspergers with the entire autism spectrum a task already, unfortunately,   under way with the DSM-5 unified description of the various autism disorders. 

I also understand very well, as the father of a son with severe autism disorder and intellectual disability, now 18, that the inclusion of persons with severe, low functioning autism in MRI studies would be extremely difficult and probably impossible.  Articles that use only Aspergers or High Functioning Autism should be described in those terms throughout the article and title and conclusions should not be drawn about persons whose intellectual disability precludes their participation in the study.    

SFARI's failure to ensure that writers using their site privileges do not generalize to the entire autism spectrum of disorders studies involving only High Functioning Autism/Aspergers subjects is not supported by evidence and is irresponsible.  

Parent Observation Based Study: Children With Autism Disorders as Early as 12 Months Display Highly Elevated Range of Repetitive Behaviors

Some study results that don't surprise me given the use of parent observation, the most, and perhaps only,  reliable source of information concerning autism symptoms during children's infancy:

Longitudinal patterns of repetitive behavior in toddlers with autism

Journal of Child Psychology and Psychiatry, 

"Conclusions

"These findings suggest that as early as 12 months of age, a broad range of repetitive behaviors are highly elevated in children who go on to develop ASD. While some degree of repetitive behavior is elemental to typical early development, the extent of these behaviors among children who develop ASD appears highly atypical."

Jason J. Wolff1,*, Kelly N. Botteron3, Stephen R. Dager4, Jed T. Elison5, Annette M. Estes6, Hongbin Gu2, Heather C. Hazlett1,2, Juhi Pandey7, Sarah J. Paterson7, Robert T. Schultz7, Lonnie Zwaigenbaum8, Joseph Piven1,2The IBIS Network†

Although our son Conor's autism diagnosis was received the day after his 2nd birthday the symptoms which prompted us to seek medical attention for our severely autistic son, lack of language development beyond some strange words (not mommy or daddy), strange sensory oriented behaviors and repetitive behaviors, were obvious by his 1st birthday. Unlike some prominent adult diagnosed autistics no one suggested he was autistic before we sought medical attention and we did not come to that conclusion ourselves. We had never heard of autism before Conor's diagnosis was presented to us and there were few autism specific services available through our public health or education services at that time.       

While Conor's autism diagnosis was delivered at 2 plus 1 day the symptoms were apparent by 1 year of age. This report, using parent observation is entirely consistent with my son's development and our observations.  I am happy to see a study which reflects the real life observations of our son's development and which I am quite sure is consistent with that of many severely autistic children. 

I sincerely applaud, and give 2 thumbs up to, the research team of Wolff et al for conducting some  autism research based on parent observation.

16 Years After Conor's Autism Diagnosis: Lots of Conor Joy But No Progress in Autism Research

Yesterday was Conor's 18th birthday. Today is exactly 16 years after his autism diagnosis, received the day after his second birthday and after several months of testing and observation. Conor, now a young man, is still the happy boy that brings joy to his Mom and Dad, along with many serious challenges, challenges that restrict his life. Here in New Brunswick, Canada, some progress was made by a commitment to evidence based intervention by a determined parent advocacy movement. In the big picture though there has been no meaningful progress and in fact there has been very substantial regression.

The regression has occurred with the creation of the Autism Spectrum Disorder diagnostic category in the DSM-5, unifying into one disorder several categories at a time when the incredible variety and heterogeneity of the autism disorders, the "autisms" as US NIMH Director Dr. Tom Insel has described these conditions should be crystal clear.  At the same time the masterminds who crafted the new DSM-5 ASD still describe groups of disorders such as "autism" intellectual disability and epileptic seizures as co-morbid conditions implying that they are separate conditions appearing together coincidentally when in fact their frequent appearance together clearly indicates they are part of one disorder, condition or subset of symptoms which most likely share common causal factors.  

Whatever way one looks at it autism research will be set back by creating a different condition to compare to earlier versions. The autism research community really has few successes, since Lovaas and those who confirmed and expanded on his work, and few causal factors have been identified with certainty.  Now the autism research community that has failed so miserably will face an additional hurdle ... comparing apples to oranges ... DSM-5 autism cases to DSM-IV cases and adjusting their results to accommodate the differences.  Good luck with that.

DSM-IV or DSM-5 the autism research community still clings tenaciously to the belief that with respect to the autisms "it's gotta be genetic".  While lip service is paid to the concept that autism results from the interaction of genetic and environmental factors research dollars still flow overwhelmingly to genetic based autism research.  Calls for an environmental autism research strategy by respected authorities  like Grandjean, Landrigan and Birnbaum are largely ignored.

Convenience and the false belief in a "pure" autism also continue to strip autism research of any value.  Autism research subjects tend to be high functioning autistic persons who are easier to work with in conducting studies. The exclusion of more challenging lower functioning participants from autism studies is justified by the non evidence based belief in a pure autism.

The truth is autism research has produced nothing of significant value in the 16 years since my son's autism diagnosis 16 years ago today.  The autism research community failed persons with autism and their parents and families when they twiddled their thumbs while the cold mothers fantasy was allowed to prevail and cause harm to all touched by autism. Since then there has been many dollars spent on autism research with precious few results to show.

I am being realistic about the state of autism research over the last 16 years just as I am being realistic when I describe the great joy that our severely autistic son Conor has added to our lives.  To Conor I say thanks Buddy.  To the autism research community I say get your acts together, start producing some results. 

Conor at age 2 loved his cake and icing and that is still true today.  He was 

and remains a happy, joyful blessing in our lives despite the many 

serious challenges that his autism disorder and "co-morbid"

 intellectual disability and epileptic seizures present. 

Proud of Our Conor

Conor looking cool, calm and composed in his grandparents' yard in 

Nova Scotia's Annapolis Valley in November. This morning he showed  just 

as much calm while enduring an early morning blood sample needle.

We were, once again, very proud of our Conor today.  Not for demonstrating some special "autism" skill, not for anything that would be featured in a sensational media story.  We were proud because Conor had blood tests scheduled again at the DECH, the local hospital where Conor spent 2 weeks in hospital last year, including 6 days in the Intensive Care Unit.  He had blood tests scheduled to help establish baseline measurements.  He handled them with as much cool, calm composure as actor Steve McQueen portrayed in "the Great Escape" movie. 

Giving blood samples can be a challenge for many adults.  For Conor the blood tests this morning meant he had to fast for 8 hours before the tests and had to start his day at the local hospital before heading off to the school he loves (Leo Hayes High School, Fredericton).  

He had expected to be in school yesterday, like most Mondays but we had forgotten to check his school schedule until the last minute when we were tipped off by a neighbor.  Monday school had been cancelled because of Teacher Development Days so Conor was very anxious to get back to school today.  Conor handled the early morning hospital visit and the blood sample needle with great calm.  He didn't fuss or fidget, whine or whimper and his Mom and Dad were happy to treat him to 2 Tim Horton bagels for a post hospital visit blood test.  Conor made us proud and we were happy for him ... and relieved ... and we got him back to school ASAP.

BC Parents Want Evidence-Based Learning Programs and Supports in ALL BC School Districts

There can be hope for children with autism in BC schools    

Parents want evidence‐based learning programs and supports established in all B.C. school districts. 

  

February 17 2014, Surrey, BC:  Recent news stories such as the Seclusion and Restraint report and most recently the story of Susan DeBeck, a Vancouver teacher who claims she was fired for standing up for her students with special needs, shows the education system is in a state of crisis when it comes to providing appropriate supports for students with special needs. 

A local non‐profit autism support group is reaching out to the Minister of Education and district administration across BC to educate them about Applied Behaviour Analysis (ABA), which is the scientifically supported gold standard in teaching and behaviour management.  

ABA is a structured teaching method in which functional skills are broken down and taught one step at a time. That means that children with autism can learn and flourish in all areas including language and communication, play and leisure, self help, life skills and academics. 

Families of children with autism often put ABA teams together to work with their children at home. Dione Costanzo, director of the ABA Support Network says that the results are worth the emotional and financial stress. 

However, once a child with autism enters school in a district that does not have supports for ABA programs, the results achieved at home can be severely compromised, says Costanzo. “All the successes achieved can grind to a halt and often the child regresses.” 

ABA is widely considered to be the most effective, evidence‐based learning approach for children with autism yet Surrey is the only school district in B.C. that has an established system for hiring ABA‐trained teaching aides. 

Costanzo says that the ABA Support Network and parents are on a mission to change this. 

“Children have a right to an education and ABA is the best method to achieve this for children with autism,” says Costanzo. “Implementing these programs, and training and hiring more ABA teaching assistants is the right thing to do, and it's the law.” 

According to the landmark Supreme Court of BC ruling – Hewko v. B.C., 2006 BCSC 1638 ‐ what is required for children with autism to access an education is adherence to their established ABA programs, and the availability of teaching aides that are trained to carry it out.  In most B.C. school districts, ABA programs are not accommodated nor do teaching aides have the proper training to support these programs.

Costanzo says that implementing the ABA programs is a cost‐neutral exercise, it just requires the political will. 

“Getting an appropriate education system for children with autism in place with ABA‐trained teaching aides requires political will and leadership,” she says. “It will not increase costs but it will be utilizing existing funds more effectively.” 

The ABA Support Network is a parent‐led, non‐profit organization whose mission is to improve access to ABA support and services for individuals with autism. 

For information about the ABA Support Network contact Dione Costanzo at dione@abasupportnetwork.com or 604‐817‐1526.  Anyone interested in learning more about autism and ABA in Schools can visit the ABA Support Network website.  

Grandjean and Landrigan Propose a Global Prevention Strategy To Control the Pandemic of Developmental Neurotoxicity

In Neurobehavioural effects of developmental toxicity, published in the Lancet, Dr Philippe Grandjean MD and Philip J Landrigan MD, propose a global prevention strategy to address the impact of developmental neurotoxicants and the increasing numbers of children with developmental disabilities including autism, ADHD and intellectual disabilities. As the article abstract points out the authors had conducted an earlier systematic review and identified five industrial chemicals as developmental neurotoxicants with six additional developmental intoxicants identified since then:

Neurodevelopmental disabilities, including autism, attention-deficit hyperactivity disorder, dyslexia, and other cognitive impairments, affect millions of children worldwide, and some diagnoses seem to be increasing in frequency. Industrial chemicals that injure the developing brain are among the known causes for this rise in prevalence. In 2006, we did a systematic review and identified five industrial chemicals as developmental neurotoxicants: lead, methylmercury, polychlorinated biphenyls, arsenic, and toluene. Since 2006, epidemiological studies have documented six additional developmental neurotoxicants—manganese, fluoride, chlorpyrifos, dichlorodiphenyltrichloroethane, tetrachloroethylene, and the polybrominated diphenyl ethers. We postulate that even more neurotoxicants remain undiscovered. To control the pandemic of developmental neurotoxicity, we propose a global prevention strategy. Untested chemicals should not be presumed to be safe to brain development, and chemicals in existing use and all new chemicals must therefore be tested for developmental neurotoxicity. To coordinate these efforts and to accelerate translation of science into prevention, we propose the urgent formation of a new international clearinghouse.

In 2013 Landrigan, Lambertini and Birnbaum had proposed A Research Strategy to Discover the Environmental Causes of Autism and Neurodevelopmental Disabilities. Autism researchers in particular, and the agencies and institutions that fund them, do not seem to have taken seriously the obvious, yes I said obvious, need to explore environmental causes and triggers of autism and neurodevelopmental disabilities and instead appear to be continuing their obsessive need to find genetic elements that "might" be "associated with"  some subsets of autism disorders. The rigid adherence to a non evidence based belief that autism has to be caused by genetic influences, the "it's gotta be genetic" (Teresa Binstock, 1999) paradigm is almost cult like in its persistence in the face of its repeated failure, despite overwhelming funding of genetic based autism research, to find any specific genetic causes of most autism disorders. 

We must act now as Grandjean, Landrigan, Lambertini and Birnbaum have proposed and take seriously the harmful effects of neurotoxicants.  We must begin to develop a rational, serious global strategy to deal with their harmful impact on generations of children to come.  

Conor's Severe Autism Disorder Challenges: Expectations

Conor and Dad are "Buddies Forever" but when he didn't expect Dad 

to be home last night he literally refused to look at me when events

 caused me to change my plans and stay home.  He did not expect me 

to be around last night so ... in his way ... I wasn't. 

Conor, as I have written many times, is severely autistic.  That doesn't stop him from being a happy boy, now a young man, who brings tremendous joy to his Mom and Dad every day. His autism disorder though does not just go away.  It is very much present when Conor's expectations are disrupted.

Conor is my "Buddy Forever" and when I am going to be away from home on business as I expected to be last night we prepare him in advance.  He didn't expect to see Dad last night.  Events intervened though that caused me to stay home for the night. While waiting on the ramp for an opportunity to access Fredericton's Westmorland Street Bridge I got rear ended by a truck that did a pretty good number on the rear bumper and trunk lid and on the driver's side lights of my Toyota Camry.  Between waiting for the police to arrive and process the accident, attending at an auto body shop, calling in my insurance claim, waiting for a drive, and tending to some other business, I was beat and decided not to leave town last night.  

Conor, who was not expecting to see me, did NOT engage in a tantrum, or meltdown, and he gave me high fives when I asked for them BUT he refused to look at me ... keeping his eyes shut to avoid seeing me at all times. Not a big deal in the scheme of things but given the fun we usually have it was a reminder that Conor's autism disorder is what it is ... a disorder. One that is still very much with him. 

See You At 6

Conor went to bed at his usual time tonight.  After about an hour he got up to use the washroom.  As he was heading back to his room he said in his own manner of speech "See you at 6" which is the exact time he gets up every morning.  He then  puts CBC NB Morning news with Terry Seguin on the television.   When Conor says see you at 6 it makes me, and his Mom,  feel very good.  Every day Conor brings us joy ... great joy ... starting at 6 am.

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

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

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

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

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

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

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

Markram K, Markram H.

Author information

Abstract

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