Autism Reality: Autism Is A Disorder

Bruise from injury suffered trying to prevent my son from injuring himself

There are few mainstream media outlets that provide reality based accounts of autism.  Feel good stories and Rain Main stereotypes abound.  I have tried to present a reality based picture of autism disorders including emphasizing the fact that Autistic Disorder and the other PDD's now referred to as Autism Spectrum Disorder are exactly that ... disorders. I was pleased to be interviewed recently as part of a brief article by the National Post which tried to at least dispel some of the myths about autism a disorder which interferes with the everyday life of those who suffer from it.

Autism is a disorder which impairs daily functioning abilities of autistic persons. If a person does not suffer any substantial impairment or limitation in their daily functioning abilities they should not be referred to as autistic, they should not call themselves "auties" or "autistics" and they should not misrepresent themselves to the world as being entitled to speak on behalf of persons with autism disorders, particularly those with severe autistic disorder.  Parents of autistic children face enough challenges without having to deal with myths generated by those who have no real knowledge of what it means to be severely autistic. 

In   Wellbeing: Tuning in to the realities of autism  Melissa Leong  and the National Post interview Suzanne Lanthier of Autism Speaks Canada about some of the myths generated about  autism disorders and the Rain Man stereotype which still dominate mainstream media autism accounts. It would take a series of lengthy, in depth analysis to cover all autism myths adequately. This short article only highlights briefly some of the myths but it does attempt to speak to some of  the realities of autism disorders.   Ms Leong interviewed me for the article and includes my  brief account of my son's  mid January, middle of the night, meltdown where he bit me on the bicep while I tried to grab his arm to prevent himself from hitting himself in the face and head.

My son Conor is a smiling, happy boy who is a lot of fun to be with ...  in him I find great joy  .... but not in his autistic disorder .... not in the disorder which limits his life, and occasionally causes him to injure himself and, even more rarely, those who love him.

Autism is a disorder and its harsher realities are not pretty.

A REAL Canadian National Autism Strategy Under A Harper Government?

As I have twice indicated on this blog I was pleased to be invited to attend the Autism Speaks Canada national autism strategy discussion in Banff, Alberta.  Although unable to attend in person I did participate via teleconference and offered my two cents worth on some of the important issues which should be addressed in any national health care strategy.  I participated, however, knowing full well that under a Stephen Harper government no REAL National Autism Strategy would be permitted.  Stephen Harper has been an opponent  of Canada's public health care system long before becoming Prime Minister of Canada.  His views are the views of the current version of the federal Conservative Party and no exception will made to ensure a strong federal government effort to address Canada's Autism Crisis.

This week has seen questionable action taken by the Harper government to have a National Health Act review conducted ..... not by the elected House of Commons where the last such review was conducted and where the Harper Party is in a  minority .... but in the unelected Senate where the Harper Conservatives hold a majority. The move, as detailed by the National Union of Public and General Employees, is  part of an ongoing campaign to diminish and possibly destroy any federal government role in funding of health care in Canada.  Organizations which call for a stronger federal government role in health care have already been told they will not be permitted to appear at the Senate review:

"NUPGE President James Clancy criticized the Harper government for sending a review of the 2004 Health Accord to the unelected Senate rather than allowing elected Members of Parliament to conduct public hearings.


Ottawa (11 Mar. 2011) - The National Union of Pubilc and General Employees (NUPGE) is criticizing the Harper governments decision to have the unelected Senate conduct the second mandatory review of the 2004 Health Accord (for more on Health Accord and federal transfers click here).


The previous review was conducted in 2008 by the House of Commons Standing Committee on Health. This moves the review outside of the elected House of Commons, where the Harper government is in a minority, to an unelected Senate committee where the Conservatives are now in a majority.


"What does this government want to hide from the public in this action," asks NUPGE President James Clancy. "Why won't the prime minister allow elected Members of Parliament to review his record on health care?"


Clancy pointed out that the move sends a bad signal about the future of public health care and Canada's democracy.


"This is one more example of the prime minister's anti-democratic nature. He sees the House of commons as a nuisance to be shoved aside. He'll do anything to bypass the democratic process," said Clancy.


The unelected Senators clearly hope to get the review done as quickly as possible. Hearings have already started in the Senate Committee on Science, Technology and Social Affairs.


A number of organizations that are calling for the federal government to play a stronger role in health care have been told they will not be allowed to appear and give testimony.


"The message for Canadians is clear: The Harper government not only holds Parliament in contempt, it also seems to view Canadians who strongly support public health care with contempt as well,” said Michael McBane, National Coordinator of the Canadian Health Coalition.


In the build-up for negotiations for the renewal of the Health Accord in 2014, some members of the Harper government have started to hint about making cuts to health care transfers. One prominent caucus member, Maxime Bernier, has publicly called for a termination of all federal health care transfers."

The opposition by the governing federal Conservatives to a federal role in health care bodes ill for a real, successful National Autism Strategy. Such a strategy requires non-partisan political support in order to succeed.  An example of non-partisan support for autism strategy exists here in New Brunswick.  Our province  has been recognized as a leader in the provision of autism services as set out in the following letter from the web site of the Association for Science in Autism Treatment's David Celiberti:.

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

Although much work remains to be done here in New Brunswick much has been accomplished. There are many reasons why this small relatively poor province has achieved some good results.  A strong parent advocacy movement has been critically important along with  the involvement of well informed, conscientious professionals.  At the end of the day though programs have been put in place by government and therein is one of the important elements in New Brunswick's autism success to date.  Our provincial autism strategy has been a non-partisan effort with both governing parties contributing significantly.

New Brunswick's dominant political parties, the Liberals and the Conservatives, have both been actively involved in improving autism services.  Many of our autism services began during the Conservative government of Premier Bernard Lord. They were improved upon during the Liberal government of Premier Shawn Graham.  Autism in New Brunswick was taken seriously by both of our governing parties over the last 10 years.

Federally however only the NDP and the Liberal party have shown an inclination to move toward a REAL National Autism Strategy.  The sovereignist Bloc Quebecois will not accept any federal role in setting national health care priorities. They are joined by the  Conservatives, currently our governing party, who are fundamentally opposed to our national medicare system.  I wish it were not so but the ideological opposition of the Harper Conservatives towards our national health care system  leaves absolutely no room  for a REAL National Autism Strategy.

10 Years of the Long, Long Fight for A REAL Canadian National Autism Strategy

Picture from Torontoist, May 10, 2008


Stefan Marinoiu, father of a severely autistic son, set out on foot from Toronto to Ottawa 
 in mid Canadian winter  and later went on a hunger strike to bring attention  to the 
challenges faced by autistic Canadians and the need for a National Autism Strategy

Autism Speaks Canada is holding a National Autism Strategy meeting in Banff Alberta next week and was kind enough to invite me as a participant and to subsidize my travel and accommodations. Some autism advocates I have talked with, people who have been actively involved in their provinces advocating for autism services and advocating for a REAL National Autism Strategy for many years are skeptical about the meeting.  Autism Speaks Canada has been soliciting funds for autism in Canada but to what end? What have they accomplished and what do they intend to do with the monies received, monies which could be directed toward provision of services for autistic persons. These are important questions and deserve answers. I would also point out that autism services in Canada have been obtained by parents fighting provincially not by national autism organizations.  I look forward to the meeting and the discussion though and will approach it  with an open mind and hopeful that the real needs and priorities fought for by autism advocates in Canada for a decade will be addressed in the meeting.

These priorities include:

1) National medicare coverage for ABA and any other intervention which meets the evidence based standard of  effectiveness as an autism intervention.

Federal funding to assist all provinces in  meeting the needs of autistic Canadian across their lifespans must also include:

2) National discussions of methods for educating students with autism in the way the individual learns best in the learning environment in which they learn best. Dumping all autistic children in the mainstream classroom regardless of their individual challenges, refusing to provide autism trained assistants to those who need assistance, does not work and can cause harm. Schools across Canada should learn best methods for teaching autistic children and avoid ideology, rhetoric, buzz words and cliches. Autism trained teachers and teacher/education aides are required for many autistic students and the federal government can provide a national forum for ensuring this happens and financial assistance where necessary.

3) (a) Work force hiring and training for those autistic adults who are capable. 

3)(b) Adult autism residential care and treatment for the most severely autistic.

Any efforts toward a national autism strategy have to address these priorities and do so in a way that actually helps people with autism across the life span from early intervention to education to adult workplace and residential care issues.  If a national autism strategy does not speak to these priorities and commit to real action to address them  it is not a real national autism strategy and should not be presented to the public as such. 

The Fight for a National Autism Strategy, a REAL National Autism Strategy, has been going on for many years in Canada.  Here in New Brunswick the struggle for a real national autism strategy has lasted a decade. It  began before Autism Speaks was formed in the United States and was waged without any real assistance from the Autism Society Canada. The fight for a real national autism strategy was fought by activists in British Columbia like the families involved in the Auton litigation and FEAT-BC, it was fought on the Hill in Ottawa by a courageous Andrew Kavchak. It has been fought by Stefan Marinoiu with his winter trek and hunger strike. 

Here in New Brunswick the fight for a National Autism Strategy  was fought initially by an organization called FACE of which I was a founding officer. It was publicly acknowledged, after a couple of years of effort by FACE representatives, by Fredericton MP Andy Scott in a high profile October 2003 event celebrating Andy's 10 years as an MP and featuring as a guest speaker former NB Premier Frank McKenna. Do the math. Here in New Brunswick the fight for a National Autism Strategy has been carried on for a decade, since 2001:

Tali Folkins article in the NB Telegraph-Journal, October 20, 2003:

"Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." "

Andy Scott, with other MP's, was ultimately successful in getting a National Autism Strategy motion passed in the House of Commons. That effort was important in obtaining recognition of the need for a national autism strategy but it did not provide what parents of autistic children were fighting for from BC to Nova Scotia: a federal commitment to provide Medicare funding for ABA which to date remains the only evidence based effective intervention for autism.

The federal government has done nothing, absolutely nothing, to address the real needs of autistic children, school kids with autism or adults with autism needing assistance in the workplace or needing residential care. The federal government has done nothing to help those adults with severe autism who need 24/7 residential care and treatment. The federal government has stayed outside the battle content to hide behind constitutional jurisdiction line while ignoring the challenges faced by autistic Canadians and their families.

Canada has been living through an autism crisis. Progress has been made. More in some provinces than in others. Much more remains to be done. To date such progress as has occurred has taken place because of activists in each province pushing provincial governments. Meanwhile the federal government has effectively disowned autistic Canadians refusing to recognize with real actions the need for a comprehensive national autism strategy.

A real national autism strategy is not accomplished by establishing a new autism bureaucracy in the federal civil service. A real national autism strategy should not focus on a Canadian specific surveillance study of autism rates as its number one priority or even establishing another academic chair at a University in Ontario. A real national autism strategy should focus on the real needs of autistic Canadians and real action to address them NOW not in another 10 years.

Those real needs and real priorities have been articulated for a decade. If a national autism strategy is going to help autistic Canadians with the real challenges of their autism spectrum disorders real action has to be taken and it has to be taken now.

Pondering the problems faced by autistic children and adults for another decade will not help autistic Canadians living today.

Autism Speaks Canada - Ontario Walk 2007 Raises $542,908

"Autism Speaks Canada has raised more than a half million dollars for autism research with its 2007 Ontario Walk. In 2006 Autism Speaks Canada raised over $1,000,000.00 for Canadian Autism researchers. A detailed list of research projects funded by Autism Speaks Canada can be found on the Autism Speaks Canada pages of the Autism Speaks website. Autism Speaks Canada describes its mission and strengths:

Autism Speaks Canada aims to bring the Canadian autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

...

The Autism Speaks Canada Board of Directors has begun and continues on its path to develop a strategic plan to raise funds through Walks and other special events and initiatives across the country to support Canadian and global autism research and to raise awareness of autism throughout Canada.

Using our strong partnerships with the Canadian Autism Research Community, Autism Speaks U.S., government, families, service providers and community agencies from across Canada, we will make a positive difference in the lives of everyone living with an Autism Spectrum Disorder.

Families in Canada have seen firsthand, what a strong collective voice of autism in the United States has accomplished in advocacy (The Combatting Autism Act); awareness (the Ad Council Campaign & Autism Everyday Video) and research funding. Autism Speaks has led the way in each of these and other areas."

Autism Speaks Canada has achieved some impressive fundraising efforts for autism research in Canada and is a welcome addition to the Canadian Autism community.