New Brunswick has an approach to adult autism disorder care and treatment that can most charitably be described as a Band Aid approach. There are many reasons for this Band Aid solution apart from the consistent waving of the “we are living in hard times” dismissal that usually accompanies the replies written for Ministers of Social Development by their communications employees. The reality, regardless of the reasons, is that adult autism care in New Brunswick typically involves one emergency solution after another. These emergencies have existed since before I became in autism advocacy after my 19 year old son’s (Read more…)
Monday, February 9, 2015 is the first International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE) scheduled to occur annually hereafter on the second Monday in February to promote epilepsy awareness around the world. Epileptic seizures are much more common among persons with an autism spectrum disorder than among the general population and parents of children with a newly diagnosed autism disorder should discuss the possibility and care implications of autism with their medical advisers. The autism and epilepsy connection is discussed on (Read more…) . . . → Read More: Facing Autism in New Brunswick: Autism Disorders and the 1st International Epilepsy Day, February 9, 2015
The top photo above was taken a year and a half ago, shortly after Conor recoved from a very serious adverse reaction to his seizure med at the time, Lamtrogine, which resulted in two weeks in the hospital including an emergency room visit and 6 days in the ICU where the excellent medical team there, including our family doctor, probably saved his life. The second picture above was taken a few months ago, shortly after Conor started a second medication, Divalproex, after which he became agitated. I was able to get him outdoors walking at the time which (Read more…)
There are lots of autism blogs on the internet. One of the best autism blogs, possibly the very best, has been the Autism Jabberwocky blog which features the thoughtful, reality based, well informed and well written commentaries of “MJ” who has now indicated, in his comment, The End of the Beginning, that the initials stand for Matthew Joseph and that he will no longer be commenting on the Autism Jabberwocky site. In departing Matthew Joseph has left us with 8 excellent points to consider. I am posting those points below because I think they are helpful (Read more…)
I will not pretend, I will never pretend, that autism is just a different way of thinking. Heather and I love our son too much to lie to the world about the nature of his autism realities, his severe autism, intellectual disability and epileptic seizures. Like many parents of autistic children I believe it is in his best interest that the world knows the realities of the complex disorder he endures and that often causes him to suffer and puts his life at risk. I can face his autism realistically while appreciating every ounce of the joy he himself brings (Read more…)
The Seinfeld-Descartes Autism Diagnostic Tool: I Think I Am Autistic Therefore I Am Autistic
Many, especially many with very, very high functioning autism diagnoses have embraced Jerry Seinfeld’s new test for autism “conditions” one that the great comic borrowed from philosopher Rene Descartes: ”I think I am autistic, therefore I am autistic“. With the Seinfeld-Descartes diagnostic tool it is no longer necessary for those who want to join the truly amazing autism club to obtain one of those pesky medical diagnoses. Nor will it be necessary to demonstrate the presence of that nasty Criterion D in the DSM5 (Read more…)
I chose the name of my email account “AutismRealityNB@gmail.com” because, from my perspective, the harsh realities of autism disorders are usually ignored or worse, intentionally misrepresented, by the mainstream media, autism awareness organizations, some high functioning autism “self”advocates and even some parents and autism professionals. An online friend of mine who shares similar perspectives, Roger Kulp, shared an article on my Facebook timeline yesterday which surprised me because it was a commentary published in the New Jersey Courier-Post which presented a realistic view of some of the harsher realities faced by some with autism (Read more…)
André Picard is a Globe and Mail public health reporter with the Glboe and Mail which is promoting the Son-Rise Program®, a purported autism program with almost no evidence based support of its effectiveness, a program which is not even mentioned in the recent CMAJ (2014) article or the (2007) AAP (reaffirmed 2010) autism reports reviewing the evidence, or lack thereof in support of various autism treatments. The 2000 MADSEC (Maine) review did expressly assess Son-Rise Program® as described in my initial commentary on this somewhat startling embrace by the Globe and Mail of a weak to non (Read more…)
Autism Canada suggests parents of autistic children should change course and head down a different trail, away from strong evidence based interventions like Applied Behaviour Analysis, toward programs with weak evidence base in support of their effectiveness like the Son-Rise Program®. The Globe and Mail has kindlly provided some support for this adventure with a less than thorough analysis or assessment of the respective approaches and treatments or the possible outcomes for autistic children involved who might lose valuable therapy time during the critical early intervention period between ages 2 and 5.
As I previously noted on this site Autism (Read more…)
Conor visiting and preparing for his transition from middle school to high school by visiting the grounds of the school and seeing the Leo Hayes High School building. I have commented on transition planning in the school system before and I don’t know if what we did with our severely autistic, profoundly developmentally delayed son can be done under the new Department of Education and Early Childhood Development policies or the collective agreement negotiated by Finance Minister Higgs with CUPE Local 2745, the union representing aides. The essence of what we did though was to show Conor what (Read more…)
In Canada we could use more federal politicians speaking honestly and accurately, as Florida Rep Bill Posey has done in the US, about Canada’s autism crisis including the realities facing those with severe autism disorders and their families. Here in Canada we have seen very little national leadership in addressing Canada’s autism crisis. Particularly during the Stephen Harper – Mike Lake era the federal government has expressly refused to engage in any meaningful way in addressing Canada’s autism issues. In Canada we have relied heavily on American leadership with respect to autism research. Against that background this father of (Read more…) . . . → Read More: Facing Autism in New Brunswick: Canadian Autism Dad Says Thank You Florida Rep. Bill Posey
Above: Conor this morning before Mom drove him to school at the Leo Hayes High School Resource Centre. Mom and Dad are very happy to have our Conor with us healthy and happy. Below: One year ago Conor was in the Intensive Care Unit of the Chalmer’s Hospital for 6 days where he was unconscious for most of the first 3 days during an adverse reaction to his seizure medication at that time. We can’t say thank you often enough to our family doctor and the emergency room and intensive care units at the Chalmers for giving us our (Read more…)
There are a number of very high functioning persons claiming to be autistic or claiming to have a “syndrome” or “different way of thinking”. Autism is a difference not a disorder they cry out in anger against all efforts to find treatments and cures, such efforts usually led by parents and family members of severely autistic children and adults. The great mystery to me is why they embrace the term “autism” to describe their “difference” but reject the label as representative of a medical diagnosis or disorder. In my humble opinion it is very unfortunate that both the DSM-5 and (Read more…)
Photo from Ameriquebec.net
In December 2007 I wrote Canada’s Autism Disgrace, describing the lack of a real National Autism Strategy in Canada. It is now 2014 and nothing has changed. Canada still lacks a real National Autism Strategy. The words I wrote in 2007, reprinted below, are as true and accurate today as they were then:
What is Canada’s National Autism Strategy? The answer is simple; we don’t have one. And as long as Stephen Harper’s Reform-Alliance-Conservative government rules Canada with an iron fist we will not have a National Autism Strategy. My friends of Conservative background (Read more…) . . . → Read More: Facing Autism in New Brunswick: Canada’s Autism Disgrace 2007: 2014 Update
Conor a year ago at the local ICU where he stayed for 6 days while the ICU professionals worked to save his life and return him to us in good health after a serious adverse reaction to his seizure medications. Other parents of children with severe autism disorders and intellectual disabilities should be made aware that their children are at very substantial risk of seizure activity particularly with the onset of adolescence. We didn’t know these well established relationships with any certainty until our son started experiencing them. April 2 will be another World Autism Awareness Day in which (Read more…)
Above: Conor last month leaving school with his Mom on his 18th birthday Below: Conor 16 years ago on his 2nd birthday. The next day he received his autism diagnosis.
Our son Conor recently turned 18. He has an autistic disorder diagnosis. He was originally diagnosed the day after his 2nd birthday. As parents we were concerned about developmental and sensory issues almost 1 year earlier and sought medical advice. At the time neither my wife Heather nor I had heard much about autism but we had observed issues with Conor’s development.
Conor’s brother, 19 months older, had (Read more…) . . . → Read More: Facing Autism in New Brunswick: Early Autism Identification Breakthrough? That’s Funny, Conor Was Diagnosed 16 Years Ago At Age 2!
Another excellent, thorough discussion from LaTrobe University’s Olga Tennison Autism Research Centre (OTARC) focusing this time on early intervention research.
“Published on 16 Mar 2014 Dr Kristelle Hudry, Dr Giacomo Vivanti, Dr John McEachin discuss the development and trends of research into early intervention. Topics covered include the neurodiversity v intervention debate, barriers to research into interventions: historical tendency to prefer high functioning autism, lack of understanding about how children learn, lack of sector accepting evidence of research, general lack of scientific culture, priorities of research funders, the problems of randomised control trials as best practice scientific design.”
Autism is not a person. Autism is defined by some authorities as a disorder, by others as “autisms” or a varied group of complex heterogeneous disorders and by still other authorities as a group of symptoms which together have come to be referred to as “autism”. Autism is not, however, a person and because of that indisputable fact it can not sign petitions lobbying government institutions to abolish legislation passed to fight autism. Autism can not oppose the rights of actual persons to be cured or treated for autism and can not oppose the rights of parents and other (Read more…)
A Stanford study which excluded autistic subjects with intellectual disability is being used to spread the false notion that autism is not a disability … just a difference. This misrepresentation of autism disorders appears in the August 16, 2013 San Jose Mercury News (I added the underlining, HLD): “Autistic kids with math abilities show different brain patterns By Lisa M. Krieger email@example.com “Stanford researchers have unearthed clues about the formidable brains of some autistic children, suggesting that the diagnosis may signal a different cognitive style, not disability. Superior math skills were found in autistic Bay Area children with (Read more…) . . . → Read More: Facing Autism in New Brunswick: Stanford Study Provides False Hope For Many Parents, Misrepresents Autism Disorders By Excluding Subjects With Intellectual Disability
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 (Read more…) . . . → Read More: Facing Autism in New Brunswick: Parent Observation Based Study: Children With Autism Disorders as Early as 12 Months Display Highly Elevated Range of Repetitive Behaviors
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 till 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 (Read more…)
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 (Read more…)
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 (Read more…)
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 (Read more…)
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 (Read more…)