Parent Advocacy, Autism Services and the Lack of Decent Adult Autism Care in New Brunswick

In Canada October is our official Autism Awareness month.  

That is not as widely known as it might be for a number of reasons including the fact that we live next door to the large, influential United States where April is the official Autism Awareness month. A second reason is that we do not have a meaningful National Autism Strategy.  Here in Canada our federal government has taken a small and narrow approach to autism.  Our federal government plays no meaningful role in providing autism services across Canada and in fact plays no meaningful role in providing reliable evidence based information about autism.  For that reliable autism information parents and autism advocates have had to look to the United States for guidance. It is quite understandable in those circumstances if Canadians assume that April is also autism awareness month here in Canada. In some provinces though, particularly British Columbia and New Brunswick strong parent advocacy did lead to creation of evidence based autism services being available. 

Here in New Brunswick we live in one of Canada's smaller, less affluent provinces.  Nonetheless we were, for a while at least, a Canadian leader in provision of evidence based early autism intervention, thanks to strong parent advocacy and sound guidance about evidence based autism interventions from UNB Professor Emeritus (Psychology) and clinical psychologist Dr. Paul McDonnell. With the information base to which Paul McDonnell directed us, parents were able through determination and strong advocacy, to prompt our governments, both Conservative and Liberal,  to provide evidence based early intervention services, in both English and French at a level that was recognized by the Association for Science in Autism Treatment:

"ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services"

Saturday, October 23, 2010

I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services," September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families.

There is a misconception that services in the United States are superior to that of our neighbors to the north. I can assure you that children with autism in rural areas and in economically depressed areas of the U.S. do not always access state of the art, science-based treatment such as those based on applied behavior analysis. In many cases throughout the US, children with autism receive poor quality behavior analytic services that may be lessened if providers were able to access more intensive training and networking opportunities similar to what is being offered in your province. Part of the Association for Science in Autism Treatment (ASAT)'s mission is to help close that gap through information dissemination, and we are keenly interested in the efforts of leaders like yourself developing, implementing, and evaluating systems.

And like other true leaders, you have looked critically at your accomplishments with an eye toward making every year of service delivery better than the previous year. We applaud your recognition that treatment parameters such as intensity need to be tailored to each child to maximize gains. When resources are scarce, this individualization can be an arduous task, but nonetheless critically important. Equally important is the need to communicate to government officials, tax payers and other stakeholders that immense financial savings are attached to doing right by our children when they are young.

It is unfortunate that funding for parent training is not more abundant. Optimal outcomes for children with autism are predicated on the support of educated, informed and skillful parents. Promoting carryover, ensuring consistency, and enhancing skill development across all environments are crucial roles for parents, but parents require support and training to assume these crucial roles. Your stated concerns and insights about the dearth of services for adults are much appreciated, and reflect the challenges that we have here in the U.S as well.

Families of children with autism in New Brunswick are blessed. Keep fighting the good fight.

David Celiberti, Ph.D., BCBA-D, President

Association for Science in Autism Treatment"

The most advocacy focused organisation in New Brunswick was group, of which I was a founding member, called FACE ... Family Autism Center for Education. Despite the reference to Education in the title FACE was primarily an advocacy organization that. because of its advocacy focus, did not enjoy official charitable status. We met in my law office board room on King Street in Fredericton and we lobbied persistently online, through the "regular, mainstream" media such as CBC, Rogers Television, The Daily Gleaner and the Telegraph Journal.  Eventually we were able to convince more reluctant members of the provincial Autism Society to join our advocacy efforts and we returned to the Autism Society New Brunswick. Together parents stood in front of the Legislature and other provincial government buildings holding signs and making our voices heard.  

Ultimately we received conscientious, serious responses from high political leadership in the Conservative Bernard Lord government and subsequently in the Liberal Shawn Graham government. With responsive leadership from our provincial cabinets we were able, for a considerable period of time, to leap frog over the more bureaucratically inclined senior civil servants who wanted to go slow who lacked the understanding of the need for urgency in helping our autistic children. 

As noted by ASAT's David Celiberti we were able to establish a strong early intervention autism service base here in New Brunswick.  We were also successful in having our governments begin providing strong autism training to Teachers' Aides and Resource Teachers to assist autistic children in our schools.  That fight was somewhat more difficult.  "Educators" did not really see it as the place of parents to play a significant role in determining what services are available in NB schools.  Again, we appealed to our political leadership and with solid information from local experts like Paul McDonnell and US sources like ASAT,  the Office of the US Surgeon General and state autism reports from Maine, New York and California we were successful. We also used the tools at our disposal including appeals under our provincial Education Act and Human Rights Act to help our autistic children receive autism trained aides in our schools.

Strong parent advocates in British Columbia played a significant role in providing tools for New Brunswick parents to use in exerting political pressure here. The Hewko BC Supreme Court decision and the Auton BC Supreme Court  and Auton BC Appeal Court  decisions (until the latter was reversed by the Supreme Court of Canada) provided valuable tools to assist us in our advocacy here in NB.  Ontario parents fighting for autism education services in the Deskin-Wynberg litigation were also of great assistance to our efforts here in NB. 

New Brunswick parent advocacy was very successful in establishing the early intervention and school autism services here in NB.  We intentionally started out by focusing on early intervention services and then moved on to the school years.  Unfortunately the success we enjoyed in advocating for our children in early intervention and school services has not been repeated in the adult years. We are as we have been for many, many years largely bereft of any meaningful adult autism care residential care and treatment services.  Our more severely impaired autistic adults will, if they are lucky, live in group homes staffed by people with no autism specific training and little if any professional oversight. Those, like my son, who are severely autistic AND developmentally challenged will probably have to live in hospital facilities, again, if they are lucky.  New Brunswick has for many years ignored these serious needs of autistic adults although there are some signs of an awakening in the form of a pilot project involving the training of one service providers at one group home. 

We also have to continue the battle to make our civil servant decision makers understand that some people with autism have other challenges which present themselves which can provide very serious risks to the safety of autistic adults. Many with autism and intellectual disability also suffer from seizures, some of which are life threatening.  Some on the autism spectrum, including some with higher functioning levels also suffer from serious challenges like depression, challenges which may be made very difficult to address because of their autism disorders. 

In Autism Awareness Month in Canada we still lack a meaningful National Autism Strategy.  Here in New Brunswick our successes at early intervention are still recognized as in they were by ASAT in 2010 and by a mother who recently returned to NB from Ontario to open a Bistro in her hometown of Woodstock and because New Brunswick offered better autism services for her autistic son than those that were available in Ontario:

"Opening a restaurant, however, was not the motivation to bring McQuade back to Carleton County. She has a four-year-old son with autism, and she says the treatment in New Brunswick is more accessible and better than what was available to her in Ontario."

A new bistro in the square, Telegraph Journal, September 5, 2013

Many New Brunswick parents whose children are currently receiving early autism intervention services or school autism services may be unaware that it was parent advocacy that led to the creation of these services.  We have to be vigilant to maintain and expand these services at the early and school years. And we absolutely have to work to bring to the attention of government the need for a full range of autism residential care services and for the end of policies of excluding adults with Aspergers/autism from other mental health services.

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Autism`s 40% With Intellectual Disability? Auti$m $peak$ Doesn't See YOU, Doesn't Speak For YOU!

Autism Speaks has done much to create publicity around the word autism, the color blue, puzzle pieces and ... some very talented, high functioning individuals with autism diagnoses like Alex Plank and J. E. Robison.  In terms of its public statements and presentations though it does little to nothing to  raise awareness about one very basic fact: autism has a very close relationship with intellectual disability to the extent that 40% of persons with autism spectrum diagnoses (DSM-IV) also have intellectual disability. 

Prior to the DSM-IV and prior to the addition of PDD-NOS and Aspergers persons with intellectual disability constituted the vast majority of persons with autistic disorder.  Autism Speaks has reluctantly acknowledged that 40% of persons with autism have intellectual disability but does not reflect their existence in their press releases.  Autism Speaks conflicted attitude toward those with autism and intellectual disability was illustrated vividly in the recent Drake and J. Cole lyrics uproar when Autism Speaks defended persons with autism but not those with autism and intellectual disability. Instead of criticizing the rappers for their derogatory reference  to persons as “autistic, retarded." Autism Speaks went further and argued that in fact persons with autism are very successful and talented. No mention was made in the Autism Speaks press release of the 40% of the autism spectrum who are intellectually disabled even though the words "mentally retarded." have been replaced by the words intellectually disabled.  

Autism Speaks chose not to stand up for the intellectually disabled members of the "àutism community" even though they were  expressly  maligned in the original lyrics:

Hip Hop Lyric Insults Autism Community

"Lyrics from the recently released song “Jodeci Freestyle” from hip hop artists Drake and J.Cole have many in the autism community up in arms. The song, which was released last month and is now getting airplay, contains the following lyric by J. Cole: “I’m artistic, you n----s is autistic, retarded." 

These lyrics are offensive and perpetuate negative stereotypes. There are many inspiring individuals with autism and other disabilities who have achieved great success across a variety of artforms, including music. We encourage J. Cole to recognize their talents and learn from the positive example they have set for all of us."

This is not the first time Autism Speaks has chosen to ignore the intellectually disabled 40% while promoting the very, very, very high functioning elite members of the autism spectrum like J. E. Robison and Alex Plank.  There is almost never any mention of the intellectually disabled in promotions and news releases by Autism Speaks or on their web site.  I have previously noted that Autism Speaks has only reluctantly acknowledged the existence of intellectual disability on the About Autism section of its web site burying mention of 40% with ID in the middle of the page, book ended by references to those with high IQs and abilities.

In the "rapper incident" AS went further than just ignoring those with autism and intellectual disability.  They implied that persons with autism, all persons with autism, are in fact talented, successful people.  They were ashamed to mention and defend the 40% with autism and Intellectual Disability.  The rappers have offered sincere apologies and taken steps to address the issue by changing the lyrics.  Rapper J.  Cole even acknowledged the existence of those with severe autism and their families.  By their actions Drake and J. Cole have shown themselves to be ahead, light years ahead of Autism Speaks in caring about ALL persons on the autism spectrum including the 40%  intellectually disabled.  

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Conor's Autism Advocacy Awards

The primary front line autism service providers, regardless of where one lives, are parents.  In Canada at least parents have also been the first and most effective advocates for services for autistic children from BC to Ontario to New Brunswick to Newfoundland and all points between.  For most parents recognition of that fact is important only to prevent others with less understanding of the impacts of autism on our children from purporting to speak on their behalf when they do so contrary to our children's best interests. The only award most of us really need though are the hugs and smiles we receive from our children.  Following are some awards Conor has given to his Mom and Dad:

This picture above was taken during my recent 6 day hospitalization for a chest infection and asthma attack. Lights were harsh for picture taking and the cell phone camera was not great so the picture is blurred but speaks volumes. Conor missed his Dad and I missed him.  His visit cheered his old Dad considerably. Conor's hugs and smiles have added immeasurably to my enjoyment of life and helped me stay focused as an autism advocate on what counts most - helping my son and others with autism enjoy a fuller more rewarding life. Conor has not been skimpy in handing out awards to his Mom and Dad:

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Education and Early Childhood Development Minister Jody Carr Opens a Dialogue with the Autism Society New Brunswick

L: Education and Early Childhood Development Minister Jody Carr

R: Autism Society New Brunswick Acting President Harold Doherty

The Autism Society New Brunswick meeting last Saturday March 23, 2013 was scheduled to be a regular meeting with election of a new Board of Directors and routine business.  That plan was changed, the election was adjourned, at my request, and after passage of a motion to that effect, and the routine business, for very good reason did not take place.  Instead ASNB took full advantage of the presence at our meeting of Education and Early Childhood Development Minister Jody Carr.  

Minister Carr had to adjust his schedule to attend and we only received confirmation he would be there the day before the meeting. The brief notice though did not reflect the nature of Minister Carr's attendance.  He was present for the entire meeting, he participated actively throughout, took notes and answered questions openly and directly.  In the 12+ years that I have been an active autism advocate we have had meetings with premiers and cabinet ministers in their offices but this was the first time  I know of that a cabinet minister actually came to one of our meetings.   

Education and Early Childhood Development Minister Jody Carr attended our meeting and to his credit was fully engaged.  Details of the meeting and discussions with the Minister will be published soon.  For today I would like to say thank you to Minister Carr for his presence and active participation at our meeting.  We look forward to future discussion with you,  and hopefully your colleagues, of matters affecting New Brunswick children and adults with autism.

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New Brunswick Queen Elizabeth II Diamond Jubilee Medal Autism Advocate Recipients: Some Missing Names

I am not spurning the recognition nor arguing with the list of autism advocates recognized by the Autism Society Canada in partnership with the Governor General of Canada with Queen Elizabeth II Diamond Jubilee Medals.  I do not seek medals of any kind or financial reward for my autism advocacy, I seek better treatment, better services, better lives for my son and others for whom autism is a serious disorder that limits their daily functioning (DSM5) and limits their lives. But it is nice to be recommended by the Autism Society Canada which is also itself comprised of autism advocates.  I have to point out though a curious anomaly that occurred with the New Brunswick recipients ... three men and no women were named despite the important role of so many women in NB autism advocacy.  Also one person with Aspergers who contributed here in New Brunswick, and in Senator Munson's autism proceedings, was also left off the list. 

This might be just a question of numbers, with three allotted for NB,  but the reality is that in New Brunswick far more women than men have been involved in public autism advocacy and many of them have played very important roles in bringing New Brunswick international recognition for its autism services and programs (even though more progress is still needed). 

I am listing the following names of women in New Brunswick who I know advocated publicly and with great result.  More names could be added for sure but these are some that I know first hand are  deserving of recognition for their efforts.   Personally I did not seek the same goals as some of those listed  but they were all persistent, effective autism advocates.  In alphabetical order (by last name):

1. Lila Barry
2. Nancy Blanchette
3. Dawn Bowie
4. Heather Chamberlain
5. Karen Hammel
6. Marsha Manuel
7. Debi McDonald
8. Darlene Pugsley
9. Linda Richard
10. Charlotte Rocca
11. Shirley Smallwood
12. Pamela Weaver

In addition to the omission of women from NB's list of recognized autism advocates it would be just plain wrong to ignore the very important efforts and contribution of a person with Aspergers who overcome some of his own personal challenges to speak publicly in front of parents' meetings, sat on the ASNB Board of Directors and was recognized and quoted in Senator Munson's autism report Pay Now or Pay Later:

 (…) if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

Jason Oldford, Fredericton,
New Brunswick (12:32)

I am sure it was difficult for the Autism Society Canada people who had to pick the names of autism advocates across Canada to receive medals.    I simply want to highlight the many women, and Jason Oldford a gentleman "on the autism spectrum", who also made very large contributions to autism progress in New Brunswick. 

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Medicare's Orphans: Jean Lewis On The Struggle for Autism Treatment In Canada

The video and clip below are from the Medicare for Autism Now web site and feature MFAN co-founder Jean Lewis, one of Canada's foremost autism advocates, providing an articulate, personally informed summary of the struggle for autism treatment in Canada.  

Jean keeps the discussion on a non-partisan level and discusses the fight to end Canada's inhumane and  discriminatory exclusion of treatment for those with autism disorders in the context of other historic struggles for liberation from discrimination based on race and gender. A very important point to remember in Jean's message is that such struggles are never overnight affairs.  They are essentially political wars which involve many battles before the wars are won.  

For those of us who are parents it is difficult  but it is, and always will be, necessary to stay engaged in the battles, to continue the fight and to assist newcomers who need to join the political armies fighting for a humane, Canadian  government to fulfill the promise of Medicare of which Canadians are justifiably proud  and ensure coverage of evidence based treatment for autism disorders. 

Jean Lewis, co-founder of Medicare for Autism Now and Civil Rights Now and co-producer of Medicare’s Orphans discusses the purposes of the film — which are provide a detailed history of the autism treatment movement, and to help maintain momentum in the campaign for justice.

 

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Medicare for Autism Now: Shelley Davis Behavioural Consultant and Attorney

From the Medicare for Autism Now web site and the film Medicare's Orphans: A Film About the Fight to Get Healthcare for Children with Autism in Canada an interview with Shelley Davis:

Shelley Davis is a US based Behavioural Consultant who has consulted to BC families for the last 15 years. She is also a practicing attorney. She reviews two US laws – the IDEA (Individuals with Disabilities Education Act) and the ADA (Americans with Disabilities Act) and how determined parent advocacy attained both. She describes the stark contrast in approach and delivery of autism treatment between California and BC. In her experience the only reason for improvements in BC was the result of the work and advocacy done by the original FEAT of BC (Families for Early Autism Treatment) parents. However, in her view, we’re still at the very beginning of the process. We need to continue to work together and have high expectations because it so too easy for children with autism to be pushed aside.

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A Real Canadian Autism Hero - Stefan Marinoiu

Stefan Marinoiu is not a federal or provincial political figure, or an entertainment celebrity of any kind talking endlessly about raising autism awareness without taking any action to help the 1 in 88 Canadians who suffer from autism disorders.  Stefan is a real Canadian autism hero.  He has made courageous efforts to have our federal government address Canada's autism crisis. 

Stefan has raised autism awareness without the benefit of political or media connections. He has not done so in order to obtain free travel to Banff or the UN or to augment a political career, he has done it to help his son, Simon,  and  others with autism disorders.  He has done it by twice putting his life at risk with a mid winter walk :autism" trek from Toronto to Ottawa and with a  hunger strike.  I was very pleased to meet Stefan and his wonderful family in Toronto.  Stefan did not confine his efforts to simply raising the awareness as happens with so many much less challenging efforts. Stefan actually advocated for  our federal government to get involved in a meaningful serious way to address Canada's autism crisis.   

Unfortunately the Stephen Harper-Mike Lake government does not want to acknowledge or deal with Canada's autism crisis and there will be no federal progress in Canada as long as the Harper version of the Conservative government holds majority control. Not a single member of our Harper Conservative government, not even those with family members affected by autism, have bothered to push for meaningful federal efforts to address Canada's autism crisis. I doubt though that Stefan will give up.  I will try to follow Stefan's example and continue efforts to advocate for meaningful efforts by our federal government to address Canada's autism crisis.  

Those of us who believe that our federal government should offer meaningful assistance to the 1 in 88 Canadians with an autism disorder have to look past the Harper era and look to NDP and/or Liberal governments to address Canada's national autism crisis.  We can't  give up in the face of Harper's indifference, we must keep fighting and refuse to give up.

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The Aurora Horror and Michelle Dawson's Bizarre Anti Autism Advocacy Rhetoric

As an autism advocate in Canada I am very familiar with Michelle Dawson's angry rhetoric in which she attacks autism organizations advocating for autism treatment for autistic children. She has campaigned vigorously and persistently against provision in Canada of ABA services for autism disorders. With the recent horror in Colorado many people have, rightly in my opinion, criticized Joe Scarborough for his irresponsible linking, even if unintended, of autism disorders to the alleged perpetrator of the massacre. I was curious to see what different high profile autism commentators were saying on the issue and was startled, even given Ms Dawson's history of negative criticism of, largely parent driven, organizations seeking ABA treatment for their children, to read her comments at her QuickTopic discussion forum "The Misbehaviour of Behaviourists": 

I have never seen an autism organization, let alone "the most important" autism organizations, describe persons with autism as "natural born criminals". I have to assume that Ms Dawson has read a critique from somebody representing an autism advocacy group who has made such a statement but I never have. 

To many in the US and around the world it may seem of no importance that Michelle Dawson would make such a bizarre statement accusing the most important autism organizations of "promoting" autistics as just naturally violent, natural born criminals.  In Canada though some of our major institutions, including the CBC, the federal government of Stephen Harper and even the Supreme Court of Canada have given her a platform to speak on the premise that she is an "autistic" and that her views are relevant to important policy and legal decision making processes.  As Jonathan Mitchell, the Autism Gadfly, has pointed out in the past the views of Ms Dawson do not prevent her and her colleague Dr. Laurent Mottron from seeking, and receiving research funding from, one of "the most important autism organizations" ... Autism Speaks.  

I assume that Autism Speaks is not one of the organizations which Ms Dawson alleges to have promoted autistic persons as naturally born criminals or, with her lofty principles, she would presumably have refused to participate in Autism Speaks funded research.  Her bizarre angry rhetoric though calls into question her ability to conduct objective autism research and should disqualify her from providing counsel to future media, government and legal decision makers.

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Medicare for Autism Now Interviews Harold Doherty

This is the video of my interview on Medicare for Autism Now! Since that interview a US Federal Court Judge has ordered Florida Medicaid to provide Medicaid coverage of ABA for autism. California has mandated insurers to provide ABA coverage for autism and the US federal government has done the same thing in respect of US federal government employees. Meanwhile back in Canada .... nothing ... or worse. 

The sham autism symposium held after a panic stricken Canadian government cancelled a real national autism symposium in order to screen out and prevent real autism activists from attending has resulted in absolutely no gains for autistic Canadians. Little progress has been made across Canada and in some provinces, like New Brunswick under the current administration, we are actually seeing gains slip away. 

We need a new generation of advocates to step forward and join the fight for autistic children and adults. We need YOU!

adults.

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Autism Society NB Advocacy History: Saving The Stan Cassidy Centre Autism Team

It is difficult to say, as an outsider, what factors weigh most heavily in the minds of public decision makers when they make decisions which impact a community, especially a vulnerable community like children with tertiary level care requirements.  

In May 2005 it was announced that a very valuable resource was going to be closing in New Brunswick. There would be no new patients accepted for treatment by the Stan Cassidy Centre for Rehabilitation tertiary care autism team.  The announcement sent shock waves through most of New Brunswick's autism community, at least  outside Saint John where that city's CACI leader Debbie McDonald was interviewed on CBC radio and took the position that the closure of the Stan Cassidy Centre autism team was a good thing: 

"wow this is too hard to believe … but in some ways I think its kind of good that the Stan Cassidy is kind of toning down its autism um efforts and kind of focusing on what they do really well, which is rehab you know rehab care center for a … for a variety of issues"

In the rest of the province, from Moncton to Maugerville to Fredericton to Miramichi and to points in between the reaction was different. Under the leadership of the Autism Society of New Brunswick we voiced our outrage as parents of autistic children,  and, to their full credit, the decision makers listened and responded meaningfully. The Stan Cassidy Centre tertiary care autism team was brought back from death's door and is today a vitally important element in the delivery of New Brunswick's autism service.  The Centre's role is even more important as an autism resource now that the Province of New Brunswick, under the Alward-Carr-Porter government,  has walked away from the internationally recognized UNB-CEL Autism Intervention Training program as the training agency for early intervention workers and education aides and resource teachers working with autistic children and substituted in its place in house training with an inevitable loss of quality and integrity. 

The letters that follow are a small but significant sample of the Autism Society New Brunswick advocacy that was exerted in order to revive the Stan Cassidy Centre's tertiary care autism team.  It was the kind of effort that is required of parents today, all of us, dinosaurs and rookies alike, if we are to preserve NB's autism gains in early intervention and education and accomplish something in adult  autism residential care and treatment.  An adult residential treatment facility is needed in Fredericton near our province's autism expertise.  

We must revive the spirit that let to our initial gains to protect those gains to the extent possible and to protect the lives of our autistic children as they .... and we ... grow older.  Governments will often ignore autism problems unless parents speak up.  

We have done it before and we can do it again. 

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Dear Minister Robichaud: 

It has come to our attention that officials at the Stan Cassidy Centre for Rehabilitation have unilaterally decided to stop accepting referrals of pediatric patients with Autism Spectrum Disorder (ASD). Our understanding is that currently 20% of the pediatric referrals to Stan Cassidy are for those with ASD.Needless to say, if this decision is allowed to stand, it would be a devastating development for those families that rely on this centre for services such as speech and occupational therapy. These families would be left without services in some cases and forced to fend for themselves. It would also leave a hole in an already insufficient network of services for individuals with ASD.

We find it unacceptable that the Autism community was not consulted on this decision. We request that this decision be reversed until such time as we in the Autism Community have had an opportunity to make the case that this decision will unduly punish many individuals who rely on the treatment they receive at the Centre.

I would respectfully request an immediate meeting with members of the Autism Community including representatives from the Autism Society of New Brunswick to discuss this matter.

Your prompt attention to this issue would be greatly appreciated. 

Sincerely, 

Luigi Rocca

President

Autism Society of New Brunswick


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NB Telegraph-Journal | News - Other

As published on page B6 on July 13, 2005

Changes made at autism treatment centre panned

BY SHAWN BERRY

Telegraph-Journal

Parents of autistic children say they want a sit-down with the health

minister before any changes are made to the way autistic patients are

treated at Fredericton's Stan Cassidy Centre - New Brunswick's only

neurological rehab centre.

While the centre will continue to treat autism patients and those on its

waiting list, pediatricians were recently asked to stop referring new

patients.

"It baffles me that they can turn their heads and make these kinds of

decision without any consultation," says Luigi Rocca, president of the

Autism Society of New Brunswick.

But Dr. Ron Harris, administrative director of the Stan Cassidy Centre for

Rehabilitation, says the decision was necessary.

"The problem we face is one of sustainability of service," he said, adding

that pediatricians will be asked to continue making referrals.

The centre's children's program provides treatment for children with brain

and spinal injuries, degenerative muscular diseases, complex cerebral palsy

and complex developmental delays.

Up to now, Dr. Harris said, the centre's been lucky to find professionals

who have been able to combine their expertise in rehabilitation and learn

about autism.

But it's a situation he doesn't think will last.

Rehabilitation and treatment for autism patients require whole different

sets of skills and training, he said.

"We're going to go out there and recruit traditional replacements who have

the skills necessary to take a six-year-old with a brain injury and provide

service to them - the dilemma that's created is the services we've provided

for autism need to be re-developed."

Autism patients would be better served by "a team that's dedicated to the

kind of challenges autistic spectrum children present," he said.

It will take a year to get through the waiting list they already have, and

over the next 12 months, the centre will be working with the province, the

health authority and other major stakeholders to help develop a new system

of care for autistic children.

Still, Mr. Rocco worries about the decision.

"I'd like to see them reverse the decision and consult with our

representatives to talk about a plan. And if Stan Cassidy is not going to be

able to work, we need a plan before they cut off their services to autistic

children to make sure there is going to be a seamless transition."

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NB Telegraph-Journal | Readers' Forum

As published on page A7 on July 19, 2005

Centre's expertise valued by autistic community

The following letter was sent to Ron Harris, the director of the Stan Cassidy Centre in Fredericton:

I am a parent of a child on the Autistic Spectrum Disorder. I am deeply distressed to hear Stan Cassidy will no longer accept referrals or serve this population of children. I implore you to reconsider. Your decision to no longer provide services to our autistic children will have a profound and direct impact on the quality of life of our children.

For parents who were fortunate to have some intervention from the Stan Cassidy Pediatric Team, it meant the lives of their children improved to the point where they learned skills to cope within a school environment. It also gave parents the tools to teach skills, thus improving their children's lives at home.

Eliminating this service is a an absolute deal breaker.

Our older children for the most part have no service, and for policy makers within your organization to eliminate such an essential service will only serves to increase the burden on parents who are already stretched to the max.

Please recognize the consequences of your decision. It will be detrimental on the lives of autistic children and their families.

I would like to add, your pediatric team of professionals always gave me hope, encouragement and a direction that would improve the quality of life for my child. Without their guidance and direction, my child would not be where he is today.

LILA BARRY

Miramichi

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Daily Gleaner | Readers' Forum

As published on page C7 on July 19, 2005

Decision on autistic children doesn't add up

This is a copy of a letter sent to the Stan Cassidy Centre for Rehabilitation, pertaining to their change of mandate.

When first I heard of the decision to discontinue services to autistic children, I assumed, giving you the benefit of the doubt, that budgetary constraints had motivated this disastrous and hurtful determination.

Now that I have read your press release, in which you rationalize this decision on the basis that the skill sets required to provide services for autistic children are different than those required for typical treatment provided by the centre, I am stunned.

You are discontinuing a vitally important health and education service without ensuring that a replacement model of service delivery is available.

You offered the absurd rationale that these services are being discontinued because they are not typically provided, and that it will be difficult to find the people with the skills to provide the service.

As someone involved in the autism community, I know you have lost some of those skilled personnel, and some potential personnel, solely because of your decision to discontinue services to autistic persons.

Your excuse has become a self-fulfilling prophecy.

You attempt to reassure us that a new model will be developed to replace the existing model for delivery of the services previously provided by the centre.

After breaking trust with the autism community, you now want us to trust you when you assert that, somehow, a replacement model will be developed when you have no authority or means to provide such a model, other than the one which you are now discontinuing.

Your re-assurances ring as hollow as the excuse you offered for discontinuing these services.

Harold L. Doherty Fredericton

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NB Telegraph-Journal | Readers' Forum

As published on page A7 on July 18, 2005

Children with autism have been let down

It has been brought to my attention that services provided to autistic children by the Stan Cassidy Centre for Rehabilitation have been discontinued effective June 21, 2005. I have no knowledge of under what circumstances this decision was made, and am deeply shocked and dismayed.

To further my dismay, no one from the autistic community was consulted or made aware of this decision. Nine years ago, the Stan Cassidy Centre provided my autistic son the benefit of a multi-disciplinary team assessment, recommendations for his early intervention worker, and our family with the tools he needed for neurological rehabilitation in the form of intensive behavioural intervention. Stan Cassidy provided our son with direct therapy every three weeks until he reached the age to move into the Regional Health Authority Paediatric Rehab Team. Since he has been school age he is under the services of the Extra-Mural Program. Stan Cassidy was a vital link to proper interventions for the autistic population.

Stan Cassidy's multi-disciplinary tertiary team travelled the province, into the rural and remote areas providing assessments and recommendations to parents, schools, local paediatric rehab staff, etc. It is a vital and much needed service.

. The number of autistic children on the caseload at Stan Cassidy must have been high, which further perplexes me as to this decision. Dr. Harris is the executive director of Stan Cassidy, and has been involved in the autism community sitting on various committees. I know because I sit on these committees with Dr. Harris.

Again, children with autism have been let down, and a vital link in the chain of services broken. I would like to know what prompted this decision, and full disclosure made to the public and autism community.

DAWN BOWIE

Maugerville

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October 4 2005

Rehab centre to treat autistic kids 

STEPHEN MACGILLIVRAY PHOTO The Daily Gleaner

Children with autism will continue to be treated at the Stan Cassidy Centre for Rehabilitation. The board of directors of River Valley Health last week reversed a decision made earlier this year - at the administrative level - to stop treating children with autism who do not have a physical disability. The policy was to take effect in 2006. "We're elated," said Luigi Rocca, president of the Autism Society of New Brunswick. "We weren't at all happy with the original decision," he said.

Autism is a serious neurological disorder that typically appears during the first three years of life and has a profound effect on communication, social interaction and sensory integration. Autism, an incurable condition believed to be genetic in origin, affects about one in 500 individuals worldwide and is four times more common in boys than girls. Intense behavioural therapy has been found to help improve social and learning abilities, but experts say that for most autistic people, the condition continues to have some impact throughout life. The original decision to discontinue treatment of some children with autism was announced in May. At a recent meeting of more than 30 stakeholders from across the province, John McGarry, president and CEO of River Valley Health, apologized for the lack of dialogue that led up to that May announcement. 

The Stan Cassidy Centre for Rehabilitation is a tertiary care centre that provides services to children across the province in rehabilitation including speech language pathology and occupational therapy. Diane Morrison, senior vice-president of River Valley Health, said the centre has treated children with autism for many years and built up a level of expertise. "They were looking at their resources and how the resources were being utilized," she said about the initial decision. "Like most services there was more demand than you have the resources to meet." Children with autism represent about 20 per cent of the case load at the centre and required more than 20 per cent of resources to treat, she said. Morrison said it was initially thought that that children with autism could be better served elsewhere, particularly children without a tertiary rehabilitation requirement. If a child with autism did have an accompanying rehabilitation requirement they would still have been seen at the centre, she aid. Morrison said the meeting with stakeholders was positive. Following that meeting, and after further discussion within the organization and at the board table last week, the decision was made to continue the service, she said. 

The board motion to continue the service also called for the creation of a provincial working group to develop recommendations that will help ensure the Stan Cassidy Centre's autism services are sustainable and integrated into treatment across the province. Morrison said it was concerns about sustainability that prompted the May announcement. She said if the centre has just one speech language pathologist and one occupational therapist then the service is fragile. "We need to make sure that we can put in place plans for sustainable service," she said. "We are trying to take systemwide approach to this." Morrison declined to comment on whether the regional health authority would need additional funding from the province to make the autism service sustainable. "I don't want to presuppose the recommendations to come out of the working group," she said. Another meeting with stakeholders is planned for Oct. 14. 

Rocca said the dispute has highlighted the overall lack of resources allocated to autism in New Brunswick. The Stan Cassidy Centre for Rehabilitation does not have enough resources on its own to deal with autism, he said. Rocca said that stakeholders are pleased that when they complained they were taken seriously by officials at River Valley Health. He said they quickly reversed their decision and did not let it drag on for months. "We are starting a meaningful dialogue," said Rocca. "We will be involve in finding a solution. "We hope we get the same response from the provincial government."

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Jean Lewis, Canada's Foremost Autism Advocate, Provides Firsthand History of Canadian Autism Advocacy From an Experienced, Personal Perspective

I strongly encourage anyone with an autistic child or interest in autism services in Canada to watch this video by Jean Lewis, Canada's foremost autism advocate, who has lived and led much of the autism advocacy in Canada over the last decade. 

Jean is extremely well informed, articulate and authentic. She has lived the reality of severe autism and related disorders with her child and she, and her husband Michael, have fought with intelligence and determination to bring services to autistic children and adults in BC and across Canada.

 

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Erosion of New Brunswick's Autism Gains: We Can't Just Stand By and Let It Happen!

New Brunswick made substantial progress in providing services to autistic pre-schoolers and students over the previous 10 years. Those gains are now being eroded. Eroded may be to gentle a way to describe what is happening.  Those gains are being dismantled completely.  

The basis for the gains made in providing autism services in New Brunswick is the UNB-CEL Autism Intervention Training Program.   Early intervention workers and teacher aides were were educated in the UNB-CEL program which provided independent, quality training.  Now training will be provided in house by the autism agencies themselves and by the Department of Education.  The interests of autistic children will now take a step back behind the competing interests of adults.   Attached following this commentary is a letter I sent this morning to various political and organizational leaders who are, or should be, interested in autism issues in NB.

The ASNB needs to step up and speak up again! We are meeting this Saturday, March 12 at 12:00 noon at MacLaggan Hall, UNB Fredericton and we need you and your voice.  See you there!

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To the Honourable Premier David Alward and other esteemed recipients with an interest in autism in New Brunswick:

There will be an open meeting of the Autism Society New Brunswick this Saturday March 24 at 12 noon at UNB Fredericton, McLaggan Hall.  The meeting is open to anyone in NB with an interest in autism.  

New Brunswick, during the previous 12 years, came to be recognized as a Canadian Leader in autism service delivery by esteemed experts including Dr. David Celiberti of the Association for Science in Autism Treatment.  The gains resulted from the efforts of many people including parent advocates, involved  professionals in psychology, speech language pathology and related disciplines, and conscientious members of both former Premier Bernard Lord and former Premier Shawn Graham. Those gains are now being eroded by decisions of the current administration without consultation with conflict free autism advocacy representatives in New Brunswick.  

Anyone interested in autism and autism service delivery is welcome to attend.  The meeting will not be conducted by a professional "facilitator".  In other words it will essentially be a free and open discussion with only two requirements -  candor and courtesy.

Hope to see you all there. Feel free to invite, or refer this invitation to, anyone you know with an interest in autism in NB.

Respectfully,

Harold L Doherty

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Autism Parents: "You Need To Take Your Heart In Your Teeth And Go On ... And Go On"

"For those parents who say they are too broke and too tired...you need to take your heart in your teeth and go on...and go on...." 


Stefan Marinoiu, Medicare's Orphans

David Marley, Simon Marinoiu, Jean Lewis, 2008

The above comment by Stefan Marinoiu, father of a severely autistic son, Simon Marinoiu,  is great advice for parents of autistic children.  It is the advice of a man who has literally walked that path and knows of what he speaks. As the parent of a severely autistic son I do not always want to hear from people who know nothing of the realities of severe, low functioning autism disorders telling me what is best for my son or what I must do to help him.  When I listened to Stefan Marinoui though I was listening to one who knew of what he talked, one who had quite literally walked the walk.

On January 31, 2008 in the middle of a cold Canadian winter Stefan Marinoiu left his home in the Toronto suburb of Scarborough and began walking with only the clothes on his back to Ottawa to raise awareness about the lack of services for people like his son Simon, a strong young man with limited communication abilities and serious behavior issues. When Stefan arrived safely in Ottawa, after receiving help from well wishers he met on his journey, he met with then Health Minister Tony Clement. 

Unfortunately Tony Clement, and the government of Prime Minister Stephen Harper were not genuinely moved by Stefan's journey. They have done absolutely nothing to ensure that  all autistic children in Canada received evidence based ABA treatment for their autism. They have done nothing to ensure that autistic adults in Canada have access to decent residential care and treatment. Gazebos, prisons, jet fighters sure, but not real help for autistic Canadian children or adults.

I met Stefan and his wonderful family when I, along with Jean Lewis and David Marley of Medicare for Autism NOW!, visited their home in the Toronto area in 2008.  Stefan is a modest person of great focus and presence.  There is no hidden agenda. His concerns are clearly and succinctly expressed in compelling language as in the advice quoted above.  I was deeply moved by the Marinoiu family, for the love they have for Simon, by their struggles to help him and by the impact Simon's autism has had on their lives.

In Medicare's Orphans Stefan, wife Bernadette and daughter Lia speak about what Simon's autism is like and what it has meant to them, the impact it has had on the members of their family.  If you watch this film and listen to Stefan, Bernadette and Lia, you will be moved.  Listening to their stories again strengthens my resolve to continue advocating for my son Conor and other children and adults with autism disorders. It strengthens my resolve to fight for early intervention, effective, real education and decent residential care for autistic children and adults here in New Brunswick and across Canada.

If you are a parent of a child with an autism disorder I encourage you to view the Medicare's Orphans film and "take your heart in your teeth ... and go on ... and go on".

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Canadian Government Funded Study Advice for Parents of Children with Autism: ABA Doesn't Work, Set Your Children Free and They Will Prosper!

A study funded by the Canadian Institutes of Health Research (CIHR) has found, surprise, surprise, that ABA is of limited effectiveness in treating autism.  The Pathways in Autism Spectrum Disorders study led by Dr. Peter Szatmari, Dr. Dr. Susan Bryson and Dr. Eric Fombonne was established with the belief at the outset that ABA is of limited effectiveness in helping low and high functioning autistic children. It was also established, not surprisingly given its government financing, and the predispositions of the lead researchers, with a view to avoiding the expense associated with providing ABA intervention.

Reducing expense is an obvious concern of a federal government which has been under pressure to provide ABA coverage for autism under our national medicare scheme. Dr. Szatmari, Dr. Fombonne and Dr. Bryson signed on to the federal government initiative to discourage medical coverage of ABA many years ago as evidenced in their 2006 Brief to the Canadian Senate. Their opinions, as articulated in 2006, are also reflected in their recent 2011 video.  Plus ca change, plus ca rest la meme. 

In  the  2006 brief to the Canadian Senate the Pathways in ASD lead researchers declared unequivocally that autism is an entirely  genetic disorder with Dr. Szatmari dedicating his career to finding the genes in question:

"For example, we do know what causes autism. It is caused by genetic factors [20]. It is an inherited disorder. The answers to what is inherited and how it is inherited are not known. But, along with my colleague, Dr. Steve Scherer at the Hospital for Sick Children, we at the Offord Centre for Child Studies are leading an international team of scientists dedicated to finding the genes that cause this disorder." [emphasis added HLD]

What is interesting is that Dr. Szatmari professes great faith in an evidence based approach to autism interventions yet  when discussing autism causation is prepared to declare autism to be an inherited, genetic disorder without knowing what genes cause the disorder, what is inherited and how it is inherited.  Evidence based?  Of further interest when news broke of the California Autism Twins Study, (CATS), interpreted by most observers as debunking the myth that autism is entirely genetic, that autism probably results from gene environment interaction,  Dr. Szatmari took a much different view pointing to the study as being of significance  because it confirmed the importance of genetic factors in causing autism, a very strange view given the dominance of genetic based autism research,  over the previous two decades:

“This is a very significant study because it confirms that genetic factors are involved in the cause of the disorder but it shifts the focus to the possibility that environmental factors could also be really important."[emphasis added HLD]

In its 2006 submission while professing support for evidence based autism interventions the Szatmari, Fombonne and Bryson trio acknowledged that early intervention was necessary but immeidately set to work discrediting both ABA effectiveness and the struggle by parents to require government funded medicare coverage for our autistic children:

"It is true that early intervention makes a difference but it is not true that all children need exactly the same type of treatment [2, 21]. Not all children need incredibly intensive intervention that takes between 20-40 hours a week. Some children do respond, but some children do not respond to even that level of intensity and need another form of treatment. Others do not require that level of intensity and can do just as well with less intensive forms of treatment that are carried out in more naturalistic settings [23]. We do not know the relative proportion of those types of children but there is now more and more scientific evidence showing us that different forms of intervention can be adapted to different types of Autism Spectrum Disorder. More work needs to be done but we are much farther ahead today than we were even five years ago."

The 3 doctors do not elaborate on what interventions, other than ABA, can be fairly described as evidence based.  Like all critics of ABA they provide no real alternative.  Nor did they acknowledge the research summarized by US agencies like the office of the US Surgeon General, the MADSEC Autism Task Force, state agencies in New York and California which have reviewed the research literature and found  ABA to be the only evidence based effective intervention for autism.

The Szatmari, Fombonne, Bryson support for the federal government autism agenda is considerable. They diminish ABA as ineffective, contrary to US authorities, and expensive.  At the same time they attack the parents who advocated for government funded ABA characterizing their litigation efforts as founded on "ill will":

"The problem is that so much animosity and ill will has built up over the last few years that it is extremely difficult to engage all the stakeholders in constructive conversations in this environment. Is there any other disorder of childhood that has gone to the Supreme Court of Canada? This ill will and this variation from province to province is essentially the direct result of a lack of information, a lack of knowing what the best treatment for each child with Autism Spectrum Disorder might be. This lack of knowledge leads to a dearth of well-qualified practitioners, long waiting lists, and non-evidence based treatments all across the country." [emphasis added HLD]


Of course the 3 doctors mention that parents are involved as part of their consultations on autism strategy. I have commented in the past on the CIHR national autism strategy consultations which included the Dr.'s Szatmari, Fombonne and Bryson.  When the national autism symposium was postponed without compelling reasons the Autism Society Canada twice expressed its concerns over the direction CIHR and the federal government were taking autism consultations. My name as a delegate was rejected by CIHR despite being put forward by the Autism Society New Brunswick as a representative and was approved by two further references, one a registered nurse and mother of an autistic child and the other a clinical psychologist with an active autism practice in New Brunswick.  When I contacted CIHR for an explanation I was told that the names of delegates were those put forward by the Autism Society Canada (Even though the federal government position was that autism was a provincial, health care, issue). (a)(b)(c) (d) (e)

The truth was that the federal government and CIHR did not want parents at the consultations who were advocating for government coverage of ABA treatment for autistic children.   Doctors Bryson, Fombonne and Szatmari all participated at the autism "consultations" when they were finally held in November 2007.  While parental ABA advocates were excluded opponents of curing autism  like Michelle Dawson and Dr. Laurent Mottron were included. In the 2011 video Dr. Szatmari tells us that the study originated with parents and with the community. In truth they excluded discussions with parents seeking ABA for their children.

Now the federal agenda friendly team of Bryson, Fombonne and Szatmari,  has put a video online in 2011 which, as they did in 2006, the 3 doctors diminish ABA as an intervention.   Meanwhile the American Academy of Pediatrics published a directive in 2007 which described the gains made by autistic children who received early ABA intervention.  That policy directive was confirmed by the AAP in December 2010.  The Szatmari/CIHR video confirms the 2006 opinions of the 3 doctors presented to the Canadian Senate but ignores the AAP conclusions and research subsequent to 2006.

In the CIHR video Dr. Szatmari paints the study as parent and community driven.  In fact it is only those parents and community members who were not ABA advocates that were involved in this government financed, tightly controlled, manipulated and driven symposium/ consultation process.

In Canada parents looking for help for their autistic children have Bryson, Fombonne, Szatmari and their colleagues in arms in the battle against ABA, Mottron and Dawson, to provide guidance.  Fortunately though, hysterical and ill willed parents seeking real help for our autistic children are able to use the (gasp) internet and  we are able to access American authorities, like the office of the US Surgeon General, the MADSEC Autism Task Force, the Association for Science in Autism Treatment and the American Academy of Pediatrics,  who are not tied to our Canadian federal government anti-ABA agenda.

God Bless America!

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