Hall's Harbour Fun for Conor and Family

Autism, severe autism, brings many challenges on a regular basis for those affected, including family members. Today was a day though when Conor was at his very best, when his autism challenges were in check.

Conor, his brother Brandon, Mom and Dad, all enjoyed the fresh air at Hall's Harbour, Nova Scotia. Conor loved the opportunity to throw rocks into the Bay of Fundy and to show Tom Brady that his days as the greatest quarterback ever (in the opinion of Conor and his Dad) may be nearing an end as he tossed rock after rock with ease. 

After exploring a bit we went  to the Hall's Harbour Lobster Pound where we  all relaxed and enjoyed the great food.  A terrific family outing!











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Australian Familiy's Harsh Autism Reality

The mainstream media, the blogosphere and Twitter are full of dreamy commentaries  telling the world that autism is not really a disorder, it is a beautiful culture, a different way of  thinking that is helping make the world a better place.  Meanwhile parents of severely autistic children around the world know better as illustrated by this Australian family's story  in the Fraser Coast Chronicle's The harsh reality of autism:

Christian's autism means he will probably never experience the beauty of friendships, will never feel the bonding love of a partner. His autism is so severe it keeps him from speaking. He has never said "I love you mum". And probably never will. He still wears a nappy, and might do for the rest of his life. He barely sleeps, eats only Vegemite scraped on white bread or salt and vinegar chips, and drinks only apple juice from a baby's bottle. One interesting aspect of his condition are his compulsive needs. He has a set of toy cars that are always assembled in the same order and in a straight line on the kitchen table. His brother sometimes messes them up to torment him. But brothers are like that. 

Christian's condition demands routine and even then the smallest thing can lead to a "meltdown". He will bang his head on floors, against walls, whatever is near. The thing about a meltdown is they can happen anywhere - in a shopping centre, in the car on the way out the driveway, they can even happen at school. "You can't stop them," Tracey says. "They can last all day."

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1 Year Limit On ABA Treatment for Autism Forces Mother to Leave Nova Scotia for Alberta


A Nova Scotia mother with an autistic son is planning to "go out to Alberta" where ABA autism treatment services are not, as in Nova Scotia, limited to one year.  Does Canada need Medicare for Autism NOW?  No question about it.  Nova Scotia, for those who don't know, is also the province which became notorious for distributing ABA services for autism on a lottery basis. 

I was born in Nova Scotia's Annapolis Valley and return  periodically to visit family. It is a beautiful province with some wonderful people but it's government has not made proper treatment of autistic children a significant priority.  Canada needs Medicare for Autism Now so that more families with autistic children are not forced to leave provinces like Nova Scotia or New Brunswick which is now, under the Alward government,  effectively dismantling many of its autism services.

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Barry Hudson: Ontario and Canada Are Failing Our Autistic Children and Adults

Barry Hudson is  a very well informed, articulate father of an autistic son in Ontario, autism advocate and director with Medicare for Autism Now! Barry describes his family life with autism and the impact of autism on family life.  He describes waiting lists and other obstacles that the Ontario bureaucracy uses to prevent children with autism from receiving autism services.  Children with autism who are not considered severe enough do not receive treatment. Children with autism who are considered too severe do not receive treatment.  A child with autism who clears these hurdles will have treatment services discontinued if they do not pass periodic improvement tests.  

Barry also provides an informed articulate history and criticism of Canada's failure to provide a national health care scheme to cover autistic children in Canada, a failure made more pronounced by the fact that some other countries have identified autism as national priorities and put programs in place to provide treatment.  


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Severe Autism Parenting Reality: An Old Fear Returns



Conor walking with Dad this morning. I often let him walk a  
distance ahead of me so he can make decisions and demonstrate his 
knowledge of routes and how to get home on his own if necessary.

Today an old fear returned and grabbed me firmly.  It was the greatest fear I have known in my life.  And it came back with full force. 

I have written a couple of times on this site about the time several years ago, when Conor was much younger, and he left the house unnoticed while he was in my sole  care.  When I realized he was missing I ran around the house, down to the Saint John River which was close to our home, across a nearby busy parking lot and then back home before calling 911. The 911 operator told me he had been taken into a nearby convenience store by a good Frederictonian who had stopped his vehicle to remove Conor from traffic to safety.  The man left as soon as I arrived and identified myself and he new Conor was safe. He left without waiting to be thanked. 

Today, years later, I was again the adult in charge and I was again distracted by a business call.  When the call was ended and I looked for Conor I realized he had again left unnoticed.  I ran outdoors around our house calling his name without spotting him,  then ran back upstairs to speak with his brother who had been busy in his room and hadn't heard him go out. When I ran down the stairs Conor stepped into the house and I was again relieved.  I believe he had just been in the back yard starting to leave via a shortcut to one or our regular walking paths and heard me calling for him. 

Conor is no longer a small child physically but he has serious cognitive challenges and severe autism disorder. When we go on our almost daily walks I will often let him walk ahead of me, within eyesight, to let him make the decisions about the direction to go to find our way home.  I have done so in the hope that if he does leave unnoticed he will know his way back which I believe he does. For that reason I  was not as fearful, or not quite as fearful, when  I couldn't find him quickly today.  I admit it though.  I was scared again.  And thankful when Conor returned to the house. Very thankful.

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Great Autism News in New Brunswick!

Great autism news in New Brunswick as the UNB-CEL Autism Intervention Training Program is being made available for the public.  (Applications available online.) The college program has previously been recommended by US autism experts Dr. Eric Larsson and Dr. David Celiberti. Dr. Celiberti in particular is very familiar with the program and had recommended the New Brunswick autism service delivery model which was based on the program  for consideration by other Canadian provinces.  Unfortunately for New Brunswick's autistic children, students and adults the successful UNB-CEL Autism Training Program, first utilized by the Premier Bernard Lord's Conservative government, and then by Liberal Premier Shawn Graham's government, has been abandoned by the David Alward government and its non evidence based, philosophically driven partners at the NBACL. 

The UNB-CEL Autism Intervention Training program was born in response to requests for tenders for autism training put out by the Lord government. That request resulted from intense and effective advocacy by many New Brunswick parents of autistic children led by the Autism Society of New Brunswick.  The actual program itself was first conceived at a meeting of a committee which was  meeting to establish an autism centre of excellence at UNB in Fredericton.  During a committee meeting a parent advocate member of the committee suggested that UNB should provide training in response to the government tenders. Dr. Paul McDonnell who was at the meeting confirmed that UNB had the professional resources to provide the training.  Anne Higgins, then with UNB-CEL, laid out a step by step process, including necessary time lines, that could be followed to meet the tender requirements. A pilot program was run and the UNB-CEL Autism Intervention Training was born!

Parent advocates, including yours truly, lobbied strenuously for the extension of the UNB training to our schools.  We met fierce opposition from some in the Department of Education who had their own agendas to pursue.  I was even subjected to threats from Department of Justice legal counsel, at the request of the then Director of Student Services, Robert Gerard, to keep me from participating in meetings between the Autism Society and Education department officials to discuss implementation of a commitment by Premier Shawn Graham to increase the numbers of UNB-CEL autism trained education assistants working with autistic students. 

We also met with fierce opposition from the New Brunswick Association for Community Living which included direct opposition from NBACL icon, then NB Human Rights chair, and now Alward transition team member Gordon Porter.  The current Education Minister's wife Krista Carr is an executive officer with NBACL and at the time she also opposed the Autism Society's position that alternative learning environments were necessary for some autistic students and in particular for those receiving ABA based instruction, provided by UNB-CEL autism trained aides, in quieter settings outside the regular classroom.  Danny Soucy is a current member of the Alward government, also affiliated with NBACL, and was also a  public opponent of Autism Society efforts to achieve the flexible inclusion necessary for many autistic children to be educated at all and in particular to receive ABA instruction from UNB-CEL Autism trained aides.

A third force opposing parents advocating for UNB-CEL training for our children was, and is, the union representing education aides, CUPE Local 2745 and its leader Sandy Harding. During the time I was ASNB President I had requested a meeting with Ms. Harding's predecessor to seek the CUPE Local 2745 support for autism trained education aides (TA's).  Ms Harding's predecessor was not interested and she herself upon taking office as Local 2745 president has been openly hostile to any serious training requirement for aides working with autistic students.  

CUPE Local 2745 has used its considerable clout to resist any training requirement and pushed hard for seniority as the only requirement for aides working with children with autistic disorders. As a labour lawyer with a quarter of a century experience, in New Brunswick and federally, I can say that such a lop sided approach to any job posting requirement is almost unheard of and, as the Alward government currently genuflects before CUPE Local 2745, constitutes an abandonment of management rights. Removal of the UNB autism training requirement in favor of pure seniority considerations and refusal to permit learning outside the classroom when necessary also constitute failure to accommodate the autistic disorders, the neurological based disabilities of children with autism contrary to Human Rights Act requirements.   Both the Alward government and CUPE Local 2745 are now discriminating against children with autism disorders by refusing to acknowledge the need for autism training for aides working with children with autism disorders which are in fact serious neurological disorders.

With these three major institutional forces aligned in lock step opposition to the accommodation of New Brunswick's autistic students comes a fourth factor - the current shaky state of the world economy. Economic factors currently provide perfect cover for the Alward government to abandon the quality and integrity of the UNB-CEL autism training for the sloppy in house training that was opposed by the Autism Society New Brunswick and for a surrender of our children's best interests in the face of the adult interests of untrained senior members of CUPE Local 2745.

In this perfect storm the revival for the public of the UNB-CEL Autism Intervention training program, and the quality and integrity it provides, is one bright light in the darkness.  It  is a beacon to guide us and provide hope that better days are ahead.

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Rethinking Autism: One Disorder or Many?

The following reviews and book description are from  Amazon and provide a glimpse into Rethinking Autism: Variation and Complexity by Lynn Waterhouse a book scheduled for release by Amazon on October 15, 2012.

Rethinking Autism promises to be a paradigm shattering approach to understanding what is now commonly called Autism Spectrum Disorder.  With the APA's DSM-5 committee about to jam the existing recognized pervasive developmental disorders into one spectrum Lynn Waterhouse's book looks like it may present a very timely challenge to the  thinking of the American Psychiatric Association's DSM-5 team:


"A seminal book forcing a much-needed change in the way in which we think about autism.  Impressively well-researched and well-argued.  A 'must-read' for all autism researchers."

--Prof. Jill Boucher, City University, London, UK



"For too long, clinicians and researchers have treated autism as a distinct syndrome. Waterhouse challenges this view with a scholarly review of evidence. Yes, there are children with pervasive developmental difficulties, but no, they are not a homogenous group - either in terms of symptoms, or underlying causes."

--Prof. Dorothy Bishop, University of Oxford, UK, Review of Rethinking Autism Lynn Waterhouse, Amazon.ca 

Book Description

The media, scientific researchers, and the Diagnostic and Statistical Manual all refer to "autism" as if it were a single disorder or a single disorder over a spectrum. However, autism is unlike any single disorder in a variety of ways. No single brain deficit is found to cause it, no single drug is found to affect it, and no single cause or cure has been found despite tremendous research efforts to find same.Rethinking Autism reviews the scientific research on causes, symptomology, course, and treatment done to date.and draws the potentially shocking conclusion that "autism" does not exist as a single disorder. The conglomeration of symptoms exists, but like fever, those symptoms aren't a disease in themselves, but rather a result of some other cause(s). Only by ceasing to think of autism as a single disorder can we ever advance research to more accurately parse why these symptoms occur and what the different and varied causes may be. 

- Autism is a massive worldwide problem with increasing prevalence rates, now thought to be as high as 1 in 38 children (Korea) and 1 in 100 children (CDC- US) 

Autism is the 3rd most common developmental disability; 400,000 people in the United States alone have autism 

-Autism affects the entire brain, including communication, social behavior, and reasoning and is lifelong 

- There is no known cause and no cure 

-Funding for autism research quadrupled from 1995 to 2000 up to $45 million, and the Interagency Autism Coordinating Committee has recommended $1 billion funding from 2010-2015

I admit that, as the father of a 16 year old son with severe Autistic Disorder and profound developmental delays, I am predisposed towards Ms Waterhouse's approach to understanding autism disorders even though it does in itself appear to be based purely on genetic models of autism. As a father who has advocated for evidence based autism services in Canada I am no fan of the very high functioning autistics who oppose parents whose sole aim is to help their own disabled severely autistic children. I do not see the very high functioning autistic self advocates who purport to speak for all persons with autism disorders as sharing similar conditions or disorders with my severely autistic son. 

I have no illusions about whether Ms Waterhouse's perspective will be accepted  and I predict right now without hesitation that it will not be embraced by the academic, medical, pyschiatric and psychological communities that shape our understanding of autism or autism(s). Several years ago I was enthusiastic about what appeared to be a paradigm shift from the "it's gotta be genetic" view of autism causation to a gene-environment model.  It has happened to some extent but  authorities are still timid about embracing it and still funnel massive amounts of research dollars in support of  genetic research while neglecting to develop a strategic plan for researching environmental factors as recommended by a group of  researchers led by Philip Landrigan and by the efforts of Irva Hertz-Picciotto and her colleagues.

While Rethinking Autism emphasizes variation and complexity of autism disorders the DSM-5 has moved in the opposite direction to combine the various recognized pervasive developmental disorders into one Autism Spectrum Disorder which could more accurately be described as Asperger's Spectrum Disorder. A Twitter tweet by Dr. Jon Brock brought the impending Rethinking Autism book to my attention. After I made an online comment about the book I was alerted to an existing paper by Lynn Waterhouse, Autism Overflows: Increasing Prevalence and Proliferating Theories, which appears to set the stage for her forthcoming book.

I have only just read the Autism Overflows paper once and, as a humble autism dad, I do not pretend that my understanding of the paper is "complete".  Some elements of the paper seem very straightforward and readily digestible though and appear to me to run contrary to the DSM-5 direction:

"Forty-five years of autism research has not produced a reasonable or progressing standard causal theory of autism. The myriad of competing theories of autism, while supported by evidence are, nonetheless, ad hockery. As Happé et al. (2006) title proclaimed “It is time to start giving up on a single explanation for autism” (p. 1218). 

Conclusion: The Center Will Not Hold 

 Rather than continue to construct theories that try to explain all the variation in autism, there should be a paradigm shift accepting that all the phenotypic and genotypic variation in autism cannot be encompassed by any single theory. De facto, if autism is caused by such a myriad of neural and other systemic deficits in development, there must be phenotypic and genotypic subgroups that have not yet been discovered.

......


Judging from many specific findings like those of Kelley et al. (2008) and the review conclusions of Amaral et al. (2008), Nicolson and Szatmari (2003), and Stanfield et al. (2008), it is improbable that two or three phenotypes (Folstein, 2006; Happé et al. 2006) will be sufficient to accommodate the collocation of deficits now included in autism and ASD. This leaves the field in a definitional quandary: If there is no autism, how can populations with the current diagnostic deficits be defined? 

 The social explosion of awareness of autism and the increasing prevalence of autism create a strong social force against disbanding the diagnostic category. However, public pressure increases the need to generate productive and predictive models, and this cannot be done while research and theory remain focused on explaining autism as a monolith.


“The only genome-wide feature specific to humans so far detected is the acceleration of evolution of genes expressed in the brain” (p. 700). Given the thousands of brain-expressed genes and genes for brain development that influence aspects of social interaction skill and flexible behavior in changing contexts, and given findings to date for the genetic basis of autism (Grigorenko et al. 2008; Morrow et al. 2008; Zhao et al. 2007), it is not reasonable to assume that in the future a gene or set of genes will be found to provide a unifying causal explanation for autism. 


Autism research should start over with a new hard core assumption that autism consists of more subphenotypes and subgenotypes than we have yet been able to hypothesize. We could begin with a provisional list of as many deficits as have been discovered in association with autism. Work could then proceed, via non-statistical analysis of complete genotype and phenotype studies of individual variation, to form groups. Exploring individual variation patterns while resisting the pressure to identify every study finding as “the cause of autism” might help move the field toward a progressive and productive splintering of the monolith."



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