Wednesday, April 23, 2014

Shannon Hill Speaks Up About About ABA Autism Intervention Benefits and Autism "Services" in Saskatchewan


Shannon Hill of Saskatchewan, parent of a child on the autism spectrum, 
Board Certified Assistant Behaviour Analyst, (Florida Institute of Technology ABA program), autism advocate and BA (Psychology)

Following is a letter written by Shannon Hill to Linda Restau director of continuing care and rehabilitation for the Ministry of Health, Province of Saskatchewan, including comments on ABA and its benefits for autistic children.

"Dear Ms. Restau,

I would like to take this opportunity to comment on the article presented by Ashley Wills of 650 CKOM April 22, 2014.

In the article you state with regard to Saskatchewan's funding for ASD services "That doesn't include some of the other services that individuals with autism may access through regional health authorities or other ministry services."

I would respectfully ask what services you are referring to - specifically. I have been a parent of a child with an Autism Spectrum Disorder for twelve years, have worked as an ASD Consultant in the Saskatoon Health Region, and have absolutely no idea what you are referring to. Are you talking about Cognitive Disability Strategy - which almost no families qualify for? Other than that, I can think of no service outside of the Health regions that would serve the Early Intervention needs of our children. Even in the case of older children who have specific,challenging behaviours such as self injury, property destruction or aggression, there is no place for parents to turn to address these behaviours. (And don't get me started on the kids under the care of Social Services or kids who are dumped in schools).

I would also urge you to take another look at the Lovaas study from 1987 that you keep referring to. It is clear that you have misread the study as everyone else who reads it, seems to understand that 47% of children in the treatment group who received 40 hours per week recovered from their symptoms of autism, which isn't to say that nothing went on with the rest of the children who underwent treatment.

Original research in peer-reviewed journals indicating that 90% of children substantially improved when utilizing the Lovaas Model of Applied Behavior Analysis, compared to the control group. Close to half attained a normal IQ and tested within the normal range on adaptive and social skills. -Lovaas Institute website. Not all children will achieve recovery, but all children will benefit from intensive therapy, their quality of life improves through developing skills that make them more independent,therefore less of a "burden" on the health care system as they age. This has been proven time and time again with research.

The cost for intervening when these children are small is great, but it is nothing compared to the cost of warehousing adults with autism who have no skills, poor social behaviour and in some cases no functional communication because they did not receive treatment early on.

I have offered my knowledge and experience numerous times to the government, and I daresay I could put you in contact with folks across this country who have much more knowledge and experience than I.

I am asking the government of Saskatchewan to please take me up on this, please, please put someone in charge who has an idea of what treatment looks like, instead of fumbling about in the dark with excuses.

Sincerely,

Shannon Hill, BCaBA"

Tuesday, April 22, 2014

Earth Day 2014 on Fredericton's North Riverfront Trail (Conor's Back Yard)

Today is Earth Day, 2014 and to celebrate this wonderful earth, and the life it supports,  I am posting a few of the pictures I have taken on Fredericton's North Riverfront Trail, also known on this site as Conor's Back Yard.













Monday, April 21, 2014

DSM or ICD, Either Way Autism is a DISORDER, or Group of Disorders, Not "Just a Difference"


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 the ICD-10 group the former Autistic Disorder, PDD-NOS and Aspergers Disorder/Syndrome under one label Autism Spectrum Disorder.  It if unfortunate that the differences between extremely high functioning, successful academics and business persons are grouped together with the 50% of the "autism spectrum" who suffer from intellectual disability many of whom will live out their lives in some form of adult care from group homes to psychiatric hospitals. 

One of the unfortunate results of the combining of these neurodevelopmental disorders, which actually began in earnest in the DSM-IV, is that some of the very high functioning persons, usually with Aspergers, attack all those including parents and other family members fighting for treatments and cures for their own family members with severe autism disorders.  These high functioning "auties" and "aspies" as some like to be called make good spokespersons for governments and organizations seeking to downplay the very severe challenges faced by those on the severe end of the autism spectrum.

One of the most puzzling aspects of the spectrum is the earnestness with which some of the anti-cure, anti-treatment, anti-family high functioning autistic persons claim that they do not have a DISORDER. It is puzzling because autism exists as a medical diagnosis, referred to as an Autism Spectrum DISORDER under BOTH the DSM-5, the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, and the ICD-10 Classification of Mental and Behavioural DISORDERS.  When and why did these individuals come to call themselves autistic if it was not done pursuant to medical diagnosis under one of these two leading diagnostic manuals or predecessor editions?

When my son with a severe  Autism Spectrum Disorder intentionally puts his hand through a glass window pane as he did last week, and has done in the past, it means that his autism is a disorder, not just a difference.  When my son goes from enjoying his activity on a swing set to hitting his head repeatedly, and with force, as he has done on many occasions it  means that his autism is a disorder not just a difference.  I have seen this lack of understanding and compassion and lack of respect for the views of parents and other family members who care for severely autistic loved ones from some  high functioning autistic persons for over a decade of autism advocacy.  I do not expect them to change, to abandon their adoration for the label autism. I do not expect them to recognize that those with severe autism actually suffer from a disorder.  My discussions with such individuals has given me no indication they would ever change their views on this subject.

What I would hope is that some day, academics and practitioners who have promoted the careers and perspectives of high functioning autistic persons and trivialized the challenges faced by those who suffer from severe autism disorders will start showing some integrity and professional responsibility whether they live in Montreal, Canada, New York, USA or Sydney, Australia. What I hope is that all academics and professionals will stop trivializing the severe challenges faced by so many with autism disorders and tell the world the whole truth about autism DISORDERS.

Autism is a disorder or group of disorders. Your professional and academic associations have said so and if you don't agree at least don't worsen the lives of the severely autistic for whom you lack interest or compassion; stop misrepresenting autism to the world as a gift or "just a difference". 

Sunday, April 20, 2014

Canada's Autism Disgrace 2007: 2014 Update


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 in Canada may not like it but that is the hard brutal truth. Canada will not have a real National Autism Strategy as long as Stephen Harper is Prime Minister of Canada. 

We certainly had the beginnings of a National Autism Strategy with the passing of the Andy Scott-Peter Stoffer motion in the House of Commons. And MP Shawn Murphy fought the good fight with his private member's initiative; defeated in the House of Commons by the alliance between the Harper Conservatives and the separatist Bloc Quebecois. Senator Jim Munson has continued his valiant efforts to keep the need to address Canada's national autism crisis alive in the media but even those efforts are becoming more challenging as the Harper-Clement team simply ignores these initiatives, ignores the needs of autistic children and adults in Canada, and proves day in and day out that they don't give a damn about the fate of autistic Canadians. 

The National Autism Strategy of Prime Minister Harper really amounted to nothing but a mediocre web site and a promise of a National Autism Symposium. The National Autism Symposium was postponed when it became clear that real autism advocates, parents fighting for their autistic children, wanted to attend the symposium. A second symposium was scheduled for November 8 and 9 in Toronto. The invitation process was itself secretive, parents were largely unrepresented and any outspoken advocates were intentionally excluded from the Symposium. 

The lists of speakers and symposium themes were never made public. The list of Harper government, hand picked delegates, to the symposium was never made public although it is a good bet that anti-ABA activists like Michelle Dawson and Laurent Mottron would have been invited. The Quirks and Quarks duo rarely miss an opportunity to promote their fringe anti-ABA views, contrary to hundreds of studies over 5 decades and numerous reviews of those studies by organizations such as the US Office of the Surgeon General and the American Academy of Pediatrics, that ABA is a scientifically supported, evidence based, effective treatment for autism. Their long held, closed minded views, so at odds with mainstream professional opinion, come in handy when needed by a government seeking excuses to camouflage their do nothing approach to addressing Canada's National Crisis. Just a guess, but I am betting that the Harper team was quite happy to invite Mottron and Dawson to the invisible, forgotten, National Autism Symposium. 

The Autism Symposium went ahead on November 8 and 9 in Toronto and Canadians STILL don't know a thing about what was said; or what conclusions, if any, were reached. It is likely though that the Harper spin doctors will ultimately issue a summary indicating that there is lack of agreement on issues on the effectiveness of any one intervention in treating autism. The results of hundreds of studies over five decades of research, the reviews by the American Academy of Pediatrics, the Office of the US Surgeon General, the MADSEC Administrators, the New York and California state agencies, the Association for Science in Autism Treatment; all will be ignored. 

The views of a few fringe anti-ABA activists will be used to prop up a cynical do nothing Harper autism policy. And Canada's National Autism Strategy will remain as nothing more than what it now is - Canada's Autism Disgrace.

As I said in 2007 Canada will never have a National Autism Strategy as long as Stephen Harper is Prime Minister of Canada.  It is now 2014, Stephen Harper is still Prime Minister and Canada still does not have a National Autism Strategy, a real National Autism Strategy.