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.

A Humble Father's Simple Autism, Intellectual Disability and Epilepsy Research Questions

I have been trying to read, and understand, literature about autism disorders since my son was diagnosed with an autism disorder almost 16 years ago. (Many would undoubtedly suggest I have far to go in development of that understanding). 

In the last few years I have begun to try and read and learn more about epilepsy and seizures, largely because of my son's apparent seizure activity confirmed by two classic grand mal seizures in the past 15 months.  An article on recent Companion of the Order of Australia recipients, recognizing accomplishments in their fields of a number of Australians included the recognition of Melbourne-based Professor Samuel Berkovic who, with a team of scientists, "discovered the first of the epilepsy genes back in 1995. Since then, they have found a number of other genes linked to epilepsy." 

In reading this article I was struck by the expression "genes LINKED to epilepsy" an expression often used to describe the results of autism disorders research results: "genes LINKED to autism" rather than discovery of genes known to CAUSE autism.  I sometimes suspected that autism researchers, who overwhelmingly conduct genetic based autism research, with very little serious research of possible environmental factors that might be involved with causing or triggering autism disorders,  were simply moving the goalposts after failing to find direct causes or triggers of autism disorders.  I have never doubted that genetics play an important role in causing autism. My concern was with the apparent exclusion of the obviously more difficult to conduct environmental based research.  

Since my son's seizure activities became very obvious I have become aware that some research indicates that seizures are frequently reported in persons with autism disorders as referenced in this abstract from a 1995 study by Rossi et al at the University of Bologna: EEG features and epilepsy in patients with autism:

"Epileptic seizures are frequently reported (4–32%) in autism. These values are higher than in the normal population of children and adolescents (0.5%). In the literature there is no uniform description of epilepsy in autism. We examined 106 patients with autistic disorder divided into three groups on the basis of presence or absence of EEG paroxysmal abnormalities (PA) and/or epilepsy including febrile convulsions (FC). Our patients presented an autistic syndrome unrelated to clear congenital or acquired encephalopathy. The prevalence of epilepsy and EEG PA was 23.6% and 18.9%, respectively. Significant differences between the three groups appeared for (i) familial antecedents for epilepsy/FC and neurologic and psychiatric diseases (P < 0.004), (ii) a different proportion between the three groups for mental retardation (P < 0.03), (iii) and EEG fast activity (P < 0.04). Our patients showed several types of epilepsy, including idiopathic forms with seizure onset after the age of 10 in 45% of cases. Seizures were mainly partial, not frequent and controllable by anti-epileptic drugs. PA were mostly focal and multifocal and in 45% of cases were typical of benign childhood partial epilepsy with centro-temporal spikes. The higher incidence of epilepsy and EEG PA is apparently not related to organic pre-, peri- and postnatal antecedents or cerebral lesions. On the contrary, genetic factors responsible for autism and epilepsy seem important in the genesis of these two disorders."

As a humble father of a son with an autism disorder, intellectual disability and seizure activities I am curious as to whether the genes that to date have been "linked to autism disorders" have been compared with those "linked to epilepsy"?  I am  not by any means pretending to have any competentcy in analyzing such information myself and I have no agenda in asking the question other than the curiosity of a father whose son suffers from autism and epilepsy symptoms.  If the same genes are "linked" to both disorders does that not help in understanding the origins and causes, perhaps the nature, of both epilepsy and autism disorders? If there are genes linked to both autism and epilepsy are they also linked to intellectual disability?  If anyone who happens on this blog can provide answers or information responsive to these questions it would be appreciated. 

Life in Conor's "Back Yard", Fredericton's North Riverfront Trail, in 2013

2013 was a challenging year for Conor and Dad health wise. I spent a week in acute care with some respiratory issues and Conor spent 2 weeks in hospital, including a six day stay in the ICU recovering from a life threatening adverse reaction to his seizure medication. Overall though life was good in 2013, including life in Conor's "back yard", Fredericton's North Riverfront Trail. We are just a couple minutes walk from the trail and the St. John River and we enjoyed the trail as often we could.

We Must Face Reality: Autism Disorders Can Be Harmful, Even Deadly

After discovering an arm, torso and legs Thursday, police continue the search for human remains along a rocky shoreline in Queens, Friday, Jan. 17, 2014. The remains belong to 14-year-old Avonte Oquendo, officials confirmed Tuesday. (AP Photo/Jason DeCrow) 

Neurodiversity cult members, including some autism professionals, academics and neuroscience students like to scream at parents and other family members who speak honestly about the dangers and deficits endured by children and adults who actually suffer from autism disorders.  Television, movies, and the mass media generally, love to provide a Big Bang picture of autism as persons with unique personalities and special gifts and extraordinary intelligence.  There is little appetite for, and as a result, less public awareness of,  honest, reality based discussions of the harm and dangers posed by severe autism disorders.   Lack of public understanding of the dangers posed by autism disorders may or may not have been a factor contributing to the departure, and now confirmed death of New York autistic youth Avonte but it certainly didn't help.  The Neurodiversity cult members who constantly fight to hide the dangerous realities posed by autism disorders may not be responsible in this specific case for what has occurred but they have not helped with their constant misinformation campaign, their constant suppression of the truth about autism disorders, the harm they can cause and the dangers they can pose to many with autism disorders.

As a father I was at fault several years ago, when my severely autistic son was younger, of not keeping a close enough watch on him when I took a business call on a Saturday afternoon.  For my son, and for me, it ended well when a good Fredericton man stopped his vehicle to remove my son from the busy traffic that he was facing crossing a local street, unaware of his danger, and took him to a convenience store where he called the police at 911.  I was able on the conclusion of my business call to find and recover him quickly once I too called 911.  Sadly, Avonte the autistic New York youth has now been confirmed to be dead 3 months after he simply left his school after walking past security. 

I am NOT suggesting that greater awareness of the very real dangers posed by autism would, or would not, have helped in Avonte's case.  In my son's case our school has been made clear, and the school has agreed, that our son requires, for his own safety,  24 hour  adult supervision which he also receives at home. Greater public awareness of the very real dangers posed by autism disorders must be undertaken now in order to reduce the likelihood of future deaths of autistic persons who wander from homes and schools. It is long past time to be honest about the harm and dangers posed by autism disorders.  My son and others with severe autism disorders depend on all of us being honest about the realities and dangers they face.

Report: Families Face Staggering Autism Care Costs

The image above is the cover page for the report of the University of Calgary School of Public Policy: The Value of Caregiver Time: Costs of Support and Care for Individuals Living with Autism Spectrum Disorder.  The report deals with the harsh realities that many involved with government, the media and many autism groups do not wish to address. In itself that is highly unusual.  Here in New Brunswick we have had some initial successes in developing evidence based early autism intervention and school services.  We have had almost no responses in addressing adult care for autism.  Recently our government did conduct a pilot project in training support staff at a group home and that is about it after a dozen years of advocacy.   The costs of avoiding the issues have fallen largely on families with some ad hoc solutions, often costly ad hoc solutions, implemented by government.  Hopefully this report from the University of Calgary School of Public Policy will be taken seriously by our NB provincial government (as well as other provincial, territorial governments and our federal government).  The official news release of the School of Public Policy follows:

CALGARY, Jan. 15, 2014 /CNW/ - A report published today by The School of Public Policy identifies staggering costs associated with autism and advocates increased support for families dealing with this challenge.

"An autism diagnosis of a high-needs child at age two represents the equivalent of telling the family that they must make an immediate lump-sum investment on that day of $1.6 million, invested at a five-per-cent return, to pay for the lifetime costs of care and support their loved one will require," write Herb Emery and Carolyn Dudley, the report's authors.

These numbers form only a part of the authors' analysis, which charts lifetime support-care needs and costs for three hypothetical individuals living with varying degrees of autism spectrum disorder (ASD). The annual value of caregiver time for a "high-needs" case is $158,359. For a moderate-needs case it is $82,769 per year and for a lower-needs case it is $30,711 per year.

The authors argue that regardless of the case, costs are often underestimated by society and government, and families are left shouldering most of the burden.

"A scan of provincial programs finds a patchwork of unequal and incomplete supports for individuals living with autism spectrum disorders. Gaps are particularly evident once individuals leave the public school system, where they are at least provided with some form of day support. Sufficient adult day supports, evening and night supports, quality group homes, the availability of properly trained caregivers and respite services, recreational activities, post-secondary opportunities and employment supports all suffer varying levels of inadequacy across the country," the authors write.

Emery and Dudley identify several approaches to relieve pressure on families. Increasing the current annual caregiver tax credit of $300 is one option. Government can also show its support by providing funding to help boost the supply of caregivers and care centres. Introducing autonomy insurance, which has already been proposed in Quebec, is another government initiative that could assist adults with disabilities.

Removing the IQ screen for eligibility of services at age 18, which exists in some provinces, is another measure endorsed by the authors. This would help individuals living with ASD who have higher IQ but lack functional skills of independence. Offering these individuals support could assist them in gaining employment, which would eat into the overall costs associated with their disorder.

The report can be found at http://www.policyschool.ucalgary.ca/?q=content/value-caregiver-time-costs-support-and-care-individuals-living-autism-spectrum-disorder

SOURCE The School of Public Policy - University of Calgary

Video with caption: "Video: Carolyn Dudley details the staggering costs faced by families with children with autism and what policy measures would help alleviate this financial burden.". Video available at

 For further information:

Media Contact:

Morten Paulsen
Phone: 403.399.3377
Email: morten@paulsengroup.ca

Waterhouse & Gillberg: Why Autism Must be Taken Apart

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

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

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

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

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

Journal of Autism and Developmental Disorders

January 2014

Why Autism Must be Taken Apart

• Lynn Waterhouse, 
• Christopher Gillberg

Abstract

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

They Just Don't Give A Damn: 2007 Adult Autism Care and Treatment In New Brunswick Was Abysmal - 2014 Nothing Has Changed, Still Abysmal

Following this comment is a re-posting of a comment I posted on this site 7 years ago in 2007 about the abysmal state of autism youth and adult residential care and treatment in New Brunswick, Canada. 7 years later and nothing has changed. Well, one thing has changed, a very important part of my life has changed.

My son with severe autism and intellectual disability is now 7 years older.... and his Mom and Dad are also 7 years older.

Time marches on. Our autistic children are becoming autistic adults. Our political and government leaders have sat on the sidelines fiddling and twiddling and doing absolutely nothing to help.

 They just don't give a damn.

Autism Youth and Adult Residential Care & Treatment Still Abysmal in New Brunswick

In October 2005 the Toronto Star reported on the case of a New Brunswick autistic youth who was being housed by the Province of New Brunswick on the gounds of a youth correctional facility. The youth had committed no crime. The state of New Brunswick's youth and adult residential care and treatment facilities was so bad, virtually non-existent for those with more severe and challenging autism disorder, that the province felt it was the only place that could accommodate the youth while they waited for his admission to a facility in the United States. The Toronto Star article follows this comment. Unfortunately, as the letter from Stephen Robbins posted here a couple of days ago indicates things have not improved any since then. In New Brunswick we must still export our autistic youths and adults out of the country for decent residential care and treatment.

From a personal perspective this issue weighs heavily on my mind. My son Conor was 9 at the time of the first story. He is now 11 and nearing the age of the two youths in these stories. In the meantime youth and adult residential care and treatment in New Brunswick have not moved a single steop forward. The bureaucracy does what the bureaucracy always does. It delays, it denies that problems exist, it worries about the careers of its members and whether they might be embarassed but it takes no significant action on critical issues affecting some of New Brunswick's vulnerable members.



" Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospitalNo other place for him to stay

13-year-old must go to U.S. hospital

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.

"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.

``We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution."

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.

"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.

"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.

"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.

"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province. "

....

Keep autistic children in the province

Daily Gleaner (Fredericton NB)

Published Wednesday May 23rd, 2007
Appeared on page C7

This is a letter to Premier Shawn Graham.

I am a father of a 13-year-old autistic boy. We had to fight for services for our son from the day he was born: to get diagnosed, to get Applied Behavioural Analysis therapy (before it was mandatory), to get teacher's aides in the classroom, to keep him in school, and to get hospital treatment when his compulsion to bite and pinch got to the point where he was covered in wounds and bruises.

I am afraid my wife and I do not have much fight left in us these days. Our son has lived under constant supervision 24 hours a day for the last year. Two workers stay in our home with him during the day (two are needed to restrain him during his rages). While we commend them for all they have done, the workers are merely a Band-Aid solution.

Our only option at this point is to send our son out of country to the U.S. for treatment that he desperately needs.

Services at the two facilities, in Maine or Boston, will cost the government $200,000 to $300,000 a year. Right now my son is costing the government $15,000 to $20,000 a month because of the government's lack of direction when it comes to older autistic children.

My question to you, Mr. Graham, is that it may have been cost effective at one time to send these children away (out of sight, out of mind). But now with it being 1 in 150 children being diagnosed within the autism spectrum disorder, maybe we should re-evaluate the direction our province is going in.

I realize that there may be no other recourse for my son but to be sent to these facilities in the U.S. for treatment.

I hope in the future we may be able to prevent our children from having to leave Canada to get the services they so desperately need.

Stephen Robbins

Woodstock, N.B.