Medicare for Autism NOW Rally in Oakville Today at 2

"Medicare for Autism Now!" Rally

Saturday, April 19th, 2008

2:00 p.m. to 4:00 p.m.

Iroquois Ridge Community Center,

1051 Glenashton Drive,

Oakville, Ontario, L6H 6Z4

autism

Medicare for Autism NOW! Meets Sandie Rinaldo and CTV

Yesterday was a big day as Medicare for Autism NOW! met Sandie Rinaldo and CTV

The CTV camera crew sets up

Jean and David arrive

Gary from CTV briefs Stefan, Jean and David

Jean and Sandie Rinaldo prepare for the interview

Afterwards its over to the CTV Toronto offices in the Globe and Mail
building before heading out for lunch

autism

Facing Autism With Stefan Marinoiu and Friends

At the end of my travel day to Toronto I met with autism's winter trek hero
Stefan Marinoiu, Jean Lewis and David Marley. Stefan invited us to dinner at his home
where his wonderful wife Bernadette had prepared an awesome meal for us. We met
Stefan's beautful family, Bernadette, sons Paul and Simon and daughter Lia.

Paul, Bernadette, Lia and Stefan

David Marley, Simon, Jean Lewis

Stefan, David, Jean and me, "the face that was made for radio", in back

Facing Autism Goes To Toronto

Yesterday I headed to Toronto for some autism advocacy as part of the
Medicare for Autism Now! team

An early start to the day

Some interesting landscape heading toward Montreal

Approaching Montreal for the connecting flight to Toronto

Approaching Toronto

The CN Tower, I am definitely in Toronto

On to the Delta Chelsea Hotel on Gerrard St W

Facing Autism In Toronto and Oakville

Tomorrow I will be 'goin' down the road', flying actually, to Toronto and then on to Oakville where I will be speaking as part of a national autism awareness and advocacy campaign. I will be joining a team of dedicated parents and concerned citizens from FEAT-BC and FEAT Ontario who are advocating for a real National Autism Strategy; for the inclusion of autism in Canada's medicare system so that autistic children, wherever they live in Canada, will have access to effective evidence based treatment.

For me, the trip will be a homecoming of sorts. I worked in Toronto for a few years in the 90's. Both of my wonderful sons were born down the QEW at the Joseph Brant Memorial Hospital in Burlington. When Conor was born there 12 years ago I had almost no awareness of autism beyond some vague movie imagery of autistic savants. I did not know then what autism would come to mean for Conor or our family. Two years later I had returned to New Brunswick and after Conor's diagnosis became immersed in the world of autism and, by necessity, autism advocacy.

For that time, Conor was diagnosed at a relatively early age, 2 years. He was diagnosed after tests and observations over a period of several months which also occurred after time waiting for our appointment with the pediatrician. We had sought medical assessment because of lack of speech, lack of interaction of the kind that a child usually shows with their parents and because of a variety of odd behaviors.

When Conor was diagnosed there was very little in the way of autism specific services or information available in New Brunswick. Along with a number of other concerned parents I began my life as an advocate for my son, and for effective autism treatment, education, and residential care. Although much remains to be done, we have accomplished much for a small province lacking the financial resources of wealthier provinces. One of the tools we used to make gains for autism services in Canada was the trial decision in the Auton case, which was upheld on appeal by the British Columbia Court of Appeal but was ultimately overturned by the Supreme Court of Canada. Notwithstanding the SCC reversal the trial decision in Auton set out accurately the state of expert opinion on the effectiveness of ABA as a treatment for autism spectrum disorders, information that was very helpful in advocating publicly for the creation of autism specific services.

Notwithstanding the advances made since the trial decision in Auton Canada remains a patchwork quilt in terms of provision of autism treatment. Oil rich Alberta provides substantial funding for autism treatment until age 18 while next door in Saskatchewan they are just starting to provide autism services. A national autism strategy, inclusion of autism treatment in Medicare, is imperative if all autistic children in Canada are to benefit, and benefit fully, from intensive early intervention.

I will be honored to travel to Toronto and Oakville and join the people from FEAT Ontario, FEAT-BC (including people like Jean Lewis one of the "Auton" parents), and fellow speakers like Constitutional lawyer Deborah Coyne and autism's winter trek hero Stefan Marinoiu The Supreme Court of Canada effectively removed the courts and the Constitution of Canada as effective tools for helping ensure that autistic children receive effective evidence based treatment in Canada. We have to get political to ensure that all autistic children in Canada are treated equally and receive the treatment they need to prosper and grow. To accomplish such a large undertaking we all need to come together and advocate EFFECTIVELY for medicare for autism.

If you are interested in getting involved in advocating for medicare for autism I hope to meet you in Toronto and Oakville. See you there!

"Medicare for Autism Now!" Rally

Saturday, April 19th, 2008

2:00 p.m. to 4:00 p.m.

Iroquois Ridge Community Center,

1051 Glenashton Drive,

Oakville, Ontario, L6H 6Z4

autism

Possible Environmental Causes of Autism and Other Neurodevelopmental Disorders

Autism rates have changed significantly since my son was diagnosed 10 years ago. At that time it was common to read estimates ranging from 1 in 500 to 1 in 1000. But the estimates started changing to 1 in 250, then 1 in 166 and now 1 in 150. In the UK the figure currently used is 1 in 100. There are many today who believe that changes in the definition of autism introduced in the DSM-IV combined with diagnostic substitution explain the dramatic increases in autism disorder diagnoses. But the advocates of this theory really have no solid studies providing precise measurements to substantiate the belief that the autism increases are all largely changes in how we view autism rather than actual increases in incidents of autism.

The definition change believers seem to be on solid ground to the extent that they argue that such change is a substantial contributing factor to the increases in autism diagnoses. They seem to stretch their belief beyond reason though when they assert dogmatically that the increases are due entirely to these social factors and rule out any environmental increases. The well known identical twins studies show that, in some cases, one identical twin will receive an autism diagnosis but the other will not, suggesting a role for environmental factors in autism causation.

In Neurodevelopmental Disorders in ChildrenAutism and ADHD Mona Sethi Gupta, Ph.D. examines environmental factors that may disrupt neurological development including lead, mercury, PCBs, dioxins, arsenic and toluene. Dr. Gupta discusses some studies suggesting environmental contributors to increasing neurodevelopment problems among children who are more sensitive to environmental toxins than adults and reminds us of the thalidomide tragedy. Dr. Gupta notes emphasizes the importance of taking action to protect children from environmental toxins:

"The impact of environmental toxins on children’s health has become a major focus in the federal government resulting in establishment of eight new research centers in children’s environmental health with joint funding from EPA and the National Institute of Environmental Health Sciences (NIEHS). "The brains of our children are our most precious economic resource, and we haven't recognized how vulnerable they are," says Philippe Grandjean, adjunct professor at Harvard School of Public Health and the lead author of the study published in The Lancet . "We must make protection of the young brain a paramount goal of public health protection. You have only one chance to develop a brain.""

There are those who argue dogmatically that environmental factors are not involved in causing autism and that the startling autism increases are due entirely to definition change and diagnostic substitution. They may honestly believe their assertions or they may be tied to promotion of book royalties or blog site advertising but modern history, thalidomide, tobacco and cancer, suggest greater caution in ruling out all environmental contributors to autism and other developmental disorders. Our children deserve better than for society to rely on the faith and belief of dogmatists on such important issues.

Note:

TheFreeDictionary

dog·ma·tist

1. An arrogantly assertive person.

2. One who expresses or sets forth dogma.

Noun

1.

dogmatist - a stubborn person of arbitrary or arrogant opinions

doctrinaire

drumbeater, partisan, zealot - a fervent and even militant proponent of something

autism

Will New Brunswick Care for Autistic Adults?

Health Minister Michael Murphy
Social Development Minister Mary Schryer

Dear Honourable Ministers

Will New Brunswick Care for Autistic Adults?

I am the proud father of two terrific sons. The younger is a wonderful 12 year old boy with Autistic Disorder who is also assessed with profound developmental delays. When he was diagnosed with an autism disorder at age 2 there was very little in the way of autism specific services available in New Brunswick. Since then, with a cooperative effort by the Autism Society New Brunswick and governments led by both major political parties, there have been very substantial improvements in autism services in pre-school and school years but nothing has been done to improve the lives of autistic adults. Our current residential care and treatment system for autistic youth and adults simply does not meet the basic residential care and treatment needs of autistic adults.

We export some autistic adults to the United States. Just a few years ago an autistic youth, who had committed no offence, was housed by the province on the grounds of the Miramichi youth correctional facility while waiting for entry to the Spurwink treatment centre in Maine.

Parents in New Brunswick have expressed deep concerns about the fate of their youth and adult autistic children:

I would like to know what is wrong the government in Fredericton, they are putting all kinds of money in the fences to keep the moose off the roads, when they are a lot of children likes ours. What really burns me is my 30 year old son in the St.John hospital on floor 4 north and he doesn't belong there but the home that he has been in for the last 5 years will not have them any more because he is "Too hard to handle. I guess that maybe we the parents of these special people should go around with a petition and see how many people will sign it and maybe we should picket the government buildings and go to the media, then maybe these people will remember that we helped put them in office. Thank-You

S.M.

...

“ I have a son who is 14 and severely autistic as well. I have had workers in my home with him for 2 years now. They told me it was supposed to be only until we could get him some help. He needs an assessment and a medication overhaul where he went completely out of hand and uncontrollable during puberty. No hospital in n.b can take him. Moncton refused him. I.W.K has been saying for the last year and a half they have no psychologist. I see a psychologist once every six weeks or so and we try something else. One of the medications made him bust through windows another gave him seizures. Right now we have between 10-15 restraints were the workers hold him for from 15-40 minutes of temper tantrums. He wears a helmet so he won't poke out his eyes. Hockey shoulder pads so he won’t bite his arm to shreds. He was bad when the workers first came with severe wounds up an down his arms but the hospital said it was no place for him, so we treated him at home. He also wears towels on his hands to prevent pinching and towels on his legs. My little boy is in crisis and we have no hospital that can even evaluate him. I have been waiting for help for 2 years, how much more can we wait. Sure they'll put him in a house if I can't stand it anymore but they would get him treatment.”

H.R.

Whatever the causes and contributors to the rise in autism rates the most commonly accepted North American estimate today is that 1 in 150 people have an autism spectrum disorder. In New Brunswick we desperately need improvements in our group home system so that autism specific homes can be located in quiet safe, semi-rural areas near New Brunswick’s major population centres. It is critically important too that staff be trained to work with and understand autistic youths and adults.

What is most desperately needed is an institutonal level treatment and residential facility for the move severely autistic adults where autism specific expert medical and psychological care can be provided and where autistic adults can live a full and secure life. The community living movement of the past 30 years resulted in many gains for people with autism disorders and mental health issues in North America but it also resulted in the closing of institutions capable of providing expertise and security to those in most desperate need as Dr. Bernard Rimland noted in 1997:

Autism Research Review International, 1997, Vol. 11, No. 1, page 3

Reopen the institutions? Advocates Reverse Stand as "Community" Tragedy Unfolds
Bernard Rimland, Ph.D.

The road to hell is indeed paved with good intentions. For decades, institutions housing mentally retarded, autistic, and other behaviorally disabled persons have been under sharp attack. Spurred by revelations of deplorable, neglectful, and abusive conditions at some institutions, well-meaning advocates of the disabled have demanded the closing of all institutions. They insisted upon the resettlement of the residents in smaller group homes (and sometimes apartments), in what they euphemistically (and naively, as it turned out) call "the community."

As we observed several years ago in our editorial, "Community, My Foot!" (ARRI 5/3, 1991), "Community once implied human relatedness. Now it refers merely to an urban area. Let us not be misled by the warm, fuzzy feeling that the word 'community' is intended to instill. Let us not be misled by the feeling of abandonment and neglect that the word 'institution' has come to connote."

It has quickly become evident that the cure-closing the institutions-is often worse than the disease. A 1993 report by Congressman Ron Wyden noted that "the private sector residential facilities for the mentally retarded have become an $11 billion-a-year business. Millions of Americans with these life-long handicaps are at risk for poor quality care, questionable and even criminal management practices by service providers, and lackluster monitoring by public health and welfare agencies.

"A disturbing pattern of abuse, neglect, and fiscal mismanagement has emerged. ......”

In New Brunswick the facts speak for themselves. We have to send our autistic youth and adults away because we do not have a secure environment in they can receive autism specific residentially based expert treatment. Simply placing people in a community location does not work in many cases. There is no need to revisit the decades old arguments about institutions fuelled by popular horror movies. Modern facilities exist which have moved away from those models and incorporate autism specific treatment and care expertise with family access and recreational opportunities.

A modernized facility providing autism specific expertise, security for residents and staff and decent recreational opportunities is desperately needed. If New Brunswick can answer this need it is, with respect, long past time that we started the process. If not Honourable Ministers I ask that you say so clearly and unambiguously to parents and caregivers of the severely autistic so that we can face our children’s future with a real understanding of the options that will, or will not, exist.

Respectfully,


Harold Doherty
Fredericton NB

cc. Autism Society New Brunswick
Facing Autism in New Brunswick

autism

Autism and Educators' Control Issues in Vernon Connecticut

It looks like an old story is playing out again in Vernon, Connecticut. ABA based instruction for autistic children, provided under contract with an outside agency, is being terminated by the local education authorities and is being brought "in house". As reported in the Journal Inquirer:


VERNON — The local school system’s decision to stop contracting with the Capitol Region Education Council to teach children with autism — and to bring the work in house — has angered parents, who say any change can harm a child with an autistic disorder.

.....

For more than a decade, CREC has taught children with autism at the Center Road School. The organization uses the Applied Behavior Analysis instructional method, which has the approval of the U.S. Surgeon General.

In fact the US Surgeon General is not the only agency to endorse ABA as an effective evidence backed instructional method for autistic children. State agencies in New York and California, the MADSEC Autism Task Force Report from Maine and the 2007 report of the American Academy of Pediatrics have all endorsed ABA as the most evidence based effective intervention for autistic children. As summarized in the 2007 AAP Report Management of Children With Autism Spectrum Disorders:

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40

So why would a successful program be discontinued and the education of autistic children brought "in house"? Control is often the real motivation for such decisions by alleged "educators" who often know little about autism, and generally know much less than the concerned parents who live 24/7 with the realities of autism. Here in New Brunswick, Canada, much progress has been made in providing autistic students, including my son Conor, with a real education. Autism specific training has begun to be provided to Teacher Aides that work with autistic children and Conor is currently receiving instruction from a UNB Autism Intervention Program trained TA under programs and supervision by autism trained resource teachers. But it was not always the case and even today senior "educators" still resist the commitment by our current government to provide UNB Autism training, which includes ABA based instruction methods, to teacher aides and resource teachers.

The excuses over the years are usually the same. I personally began advocating several years ago for ABA instruction in our schools and a Department of Education spokesman was interviewed as part of a story in which I was featured. The spokesman downplayed ABA and said that the Department was interested in TEACCH. TEACCH has often been described as "promising" but lacking in evidence of effectiveness in teaching autistic children. As summarized in the MADSEC ( Maine Administrators of Services for Children with Disabilities) Autism Task Force Report 1999, 2000 (rev.ed.) :


• Substantiated as effective based upon the scope and quality of research:

Applied behavior analysis. In addition, applied behavior analysis’ evaluative procedures are effective not only with behaviorally-based interventions, but also for the systematic evaluation of the efficacy of any intervention intended to affect individual learning and behavior. ABA’s emphasis on functional assessment and positive behavioral support will help meet heightened standards of IDEA ‘97. Its emphasis on measurable goals and reliable data collection will substantiate the child’s progress in the event of due process.

• Shows promise, but is not yet objectively substantiated as effective for individuals with autism using controlled studies and subject to the rigors of good science:

Auditory Integration Training, The Miller Method, Sensory Integration, and TEACCH.

• Repeatedly subjected to the rigors of science, which leads numerous researchers to conclude the intervention is not effective, may be harmful, or may lead to unintended consequences:

Facilitated Communication.

• Without scientific evaluation of any kind:

Greenspan’s DIR/”Floor Time,” Son-Rise.

In New Brunswick the UNB Autism Intervention Training of teacher aides and resource teachers has been opposed by some senior educators who wanted to do the training ..... "in house" just as the Vernon educators want to provide the instruction of autistic children in house. In each case, the autism training here in New Brunswick, or the autism instruction in Connecticut, it is control which is the real issue, control by the educators. In the Connecticut story the alleged educators want to use non-ABA methods of instructing autistic children, despite the well studied effectiveness of ABA and despite the lack of evidence supporting the effectiveness of other autism instruction methods. One spokesman even acknowledged that one of the methods that they seek to use has NO evidence in support of its effectiveness:

Buell says the ABA method is “not going out the window” and will be used with children who do well with it.

But she said in a written statement that the school system plans to explore a variety of other instructional methods.

With one possible exception, all the methods under consideration have studies supporting their effectiveness, Buell added.

Spokesperson Buell did not elaborate, in the article anyway, about these "other instructional methods" and the studies in support of their effectiveness. Whatever they might be there is no way these other methods enjoy the scope and quality of research in support of their effectiveness, as reported by the Maine MADSEC Autism Task Force in 1999-2000, or the AAP in 2007.

It is not about "other instructional methods".

It is about control.

autism

Medicare for Autism Now! campaign returns to Ontario

Medicare for Autism Now! campaign returns to Ontario

Jean Lewis, chief spokesperson for FEAT-BC’s Medicare for Autism Now! campaign today announced that she and others, including Stefan Marinoiu, of Toronto, will be traveling through Ontario, organizing parents and supporters as part of a national initiative to obtain Medicare coverage for autism treatment. They will be holding a news conference on Parliament Hill, in the Charles Lynch Press Theatre, at 11:00am on Monday, April 14^th.

The news conference will be followed by a three day campaign swing through federal Health Minister Tony Clement’s constituency of Parry Sound-Muskoka, various media interviews in Toronto, on Friday, April 18th, and a concluding parent/supporter rally at the Iroquois Recreation Centre, in Oakville, beginning at 2:00pm on Saturday, April 19th. Making your vote count in the next federal election will be the central message to be delivered by a variety of speakers.

FEAT-BC’s Medicare for Autism Now! campaign is building a coalition of parents, active supporters and other fair-minded Canadians across our country. “The epidemic of autism and the urgent need for effective and affordable treatment is a major issue in the US federal election campaign. We aim to make sure the same thing happens in Canada because our children deserve no less”, said Mrs. Lewis.

For further information, contact: Jean Lewis at 604-290-5737 or via e-mail: jean.lewis@telus.net.

autism

TA Tips - Tips for Securing a Teachers Assistant For Your Autistic Student

This article is an updated repost of a previous comment made on this site in 2006 which also previously appeared in an Autism Society New Brunswick newsletter.

Since these tips were originally drafted ASNB has been successful in encouraging the provincial government to train teacher aides and resource teachers at the UNB-CEL Autism Intervention Training program. Premier Shawn Graham and Education Minister Kelly Lamrock have commited to training 100 TA's and resource teachers per year for 4 years at UNB-CEL AIT. One year's class has graduated and another should be starting soon. The training for these positions roughly reflects the training offered to Autism Support Workers and Clinical Supervisors who provide intervention in the pre-school agencies.

Notwithstanding the above commitment competition to have UNB-CEL autism trained TA's working with your child could be stiff. If your child is moving into the school system you may want a trained TA to continue the progress achieved in the pre-school years. If your autistic child is already in the school system and you believe he/she would benefit from the help of an autism trained TA these tips might also help. No matter where you are in New Brunswick from Saint John, and Moncton to Fredericton, Bathurst Miramichi or Edmundston do not hestitate to email me at AutismRealityNB@gmail.com if you have a question.

.....................................................................................................................................................................

I am a lawyer and an active member of autism organizations in New Brunswick. Mostly I am the father of two boys one of whom is profoundly autistic. Like everyone else, I am continually fighting for a trained Teacher's Assistant to work with my autistic son; preferably one who has received the Autism Support Worker training course from UNB CEL. Many parents are fighting just to get a TA period. I offer these tips primarily for those who might need some guidance or who are just starting out. This is offered as parental advice and general information and is not offered as legal advice. For those seeking help in obtaining a TA I suggest the following and stress that you should seek assistance from other parents. I did. They were a big help in getting a TA for my son.

1. Document your child’s condition and school requirements. If your child is diagnosed with an autism spectrum disorder make sure that the school has a copy of the diagnosis. This may seem obvious but in some cases the school and district have been able to point out that they were unaware of any actual diagnosis of autism disorder.

2. Medical, Psychological or Therapeutic Assessments – If you think your child needs a Teacher's Assistant to learn in the school environment you should ask any pediatrician, psychologist, occupational therapist, speech language therapist or behavioural interventionist who is working with your child if they agree and would provide a written recommendation for a TA and present their recommendations to the school.

3. Be a Parent Advocate – Most parents know their autistic child better than most professionals. Do not be afraid to speak up – politely – but without fear - to express your view of what your child requires.

4. Autism Advocates – If you know an autism advocate or fellow parent of an autistic child who would be willing to attend a meeting with the school you should bring them along. They can provide you with moral support and confirmation of your experiences as a parent in describing what your child requires.

5. Safety – For many autistic children a TA is a must for safety reasons alone and this must be stressed if it is true for your child. An autistic child may not appreciate the many dangers posed by school, playground and nearby streets.

6. Individual Learning Method – If your child requires an individual based learning method using Applied Behavioural Analysis (ABA) techniques, or other individual based instructions, emphasize this with the school. For ABA in particular there is a great deal of professional literature about the need for one to one instruction for autistic children.

7. IEP or SEP – If the school or district refuse a TA for your child do not sign off on the IEP/SEP for your child unless you agree with that decision. Or if you do sign put a note beside your signature stating that you still require a TA for your child. Otherwise the school and district will argue that you agreed that a TA was not necessary.

8. Appeal – If a TA is denied for your child be ready to appeal right away under the Education Act. The School should have informational pamphlets available and forms explaining the appeal process to you. You might also want to consider hiring a lawyer to work with you on the appeal process.

Conclusion – Preparation, pressure and persistence are all required to obtain and keep a TA for your autistic child. It is a long tough fight and it is one that almost all of us have to go through to one extent or another. Do not overreact emotionally or unduly antagonize school officials. You need their help and most want to help. Getting overheated gives an excuse to the few who do not want to help to refuse what you are looking for. Stay calm and persist.

Harold Doherty

autism

Medicare for Autism Now! Rally April 19th Oakville

"Medicare for Autism Now!" Rally

Saturday, April 19th, 2008

2:00 p.m. to 4:00 p.m.

Iroquois Ridge Community Center,

1051 Glenashton Drive,

Oakville, Ontario, L6H 6Z4

Why should you attend?

* Despite a decade of lobbying, collaborating and litigating – autism treatment is still excluded from our universal health care system. Canadian families from BC to Newfoundland and everywhere in between are still bankrupting themselves in order to provide treatment for their disabled children.

* The current and limited patchwork of funding and services provided through the provinces’ social services ministries could evaporate tomorrow with a change of government, or the stroke of a bureaucrat’s pen. No legislation or mandate exists within these social services ministries to deliver health care or to protect and enshrine our children’s medically necessary treatment.

* In 30 years of "advocacy", the only two initiatives which have achieved ANY success in obtaining treatment funding in any province has been litigation, and more recently, focused political action. Both were brought by volunteer parent groups.

* Autism is an epidemic of staggering proportions, it now afflicts one in every 150 children in North America, one in every 94 boys. Autism has become an election issue in the U.S. - Senators Clinton, Obama and McCain have all articulated extremely progressive positions. In 2006, the U.S. federal government unanimously passed the "Combating Autism Act" which allocated $945 million into research and treatment. The U.S. federal government recognizes their responsibility to intervene by acting to avoid a major health and social crisis.

* It is time for our federal government to recognize their responsibility to act! This is not a left or right issue – it’s a right or wrong issue!

* Today, all over Canada, parents of children with autism and growing numbers of fair-minded, but outraged Canadian voters expect our federal government to act. We are letting those who govern and those who wish to govern know they will be held accountable, regardless of party affiliation, at the ballot box in the next federal election.

Who should attend?

You – and every fair-minded Canadian you know!

In Canada, children with autism and their families suffer from political indifference. It will take the sustained energy and dedication of EVERY CANADIAN who desires a just society to correct this injustice. For our children’s sake, and the sake of future generations, we urge you to attend this rally. Please bring friends, family, kids, anyone and everyone you know who is appalled by the gross injustice done to our children every day by the governments of Canada and its provinces.

Come and find out how you can make your vote actually count!

Featured speakers will include:

Jean Lewis – Vancouver parent, B.C. Co-ordinator for "Medicare for Autism Now!" initiative

Harold Doherty – Fredericton parent, Maritime Co-ordinator for "Medicare for Autism Now!" initiative

David Marley – Vancouver supporter/advisor, B.C. Co-ordinator for "Medicare for Autism Now!" initiative

Stefan Marinoiu – Toronto parent, "Medicare for Autism Now!" supporter

Deborah Coyne – Toronto parent, "Medicare for Autism Now!" supporter

Please RSVP a.s.a.p. to: Jennifer O’Brien

Email: jobrien116@cogeco.ca

For more information regarding "Medicare for Autism Now!" – check out:

www.medicareforautismnow.blogspot.com


autism

World Autism Awareness Day Has Come and Gone - Now What?

History has been made. The first World Autism Awareness Day has come and gone. CNN, to their credit, featured many more faces of autism, albeit briefly. CNN, to its discredit, returned to its fixation with "atypical" autistic person Amanda Baggs and her neurodiversity, "WE don't want a cure", ideology. But there is no denying that people around the world had their awareness of autism raised to one extent or another. Visits to autism blogs like this one doubled or more on April 2, 2008. OK, we have more autism awareness, now what?

For this father of a 12 year old boy with Autistic Disorder with profound developmental delays the fight will continue to help improve his situation in life and hopefully that of some other autistic children and adults here in New Brunswick and possibly elswewhere in Canada by fighting for government funded ABA intervention for autistic children wherever they live in Canada, continuing to fight for Teacher Aides and Resource Teachers trained at the University of New Brunswick Autism Intervention Training program and fighting for improvement in adult autistic residential care and treatment.

If you are an autistic adult, or parent or family member of an autistic child or severely autistic adult you probably already know what you are fighting for, you probably know what has to be done to help yourself or the autistic loved one in your life.

If you are the parent of a newly diagnosed autistic child though you will want to consult your local professionals with autism expertise. If you do you will most likely be told that there are a number of autism interventions but that there is one above all that has been studied and stood the test of time and been proven effective in helping autistic children - Applied Behavior Analysis:


“ABA is the application of a scientifically-based approach to teaching and behaviour management. Its greatest goal is to teach children the skills that will allow them to be as self-supporting as anyone else in society, to be able to make choices for their own lives.


Dr. Mickey Keenan, University of Ulster, School of Psychology


ABA has more research support than any other treatment or therapy for this population. It incorporates proven strategies such as shaping, prompting, and positive reinforcement. Numerous task forces around the country have endorsed ABA as the preferred therapy for children with autism. There are hundreds of objective research studies that have shown ABA to be an effective method for teaching language, social, and independence skills, and for reducing problem behaviors. There are few, if any, research studies examining sensory integration, floor time, music therapy, and special diets.


Alan Harchik, Ph.D., BCBA, the May Institute


The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40

American Academy of Pediatrics, Management of Children With Autism Spectrum Disorders, October 29, 2007

autism

Alex Plank with Aspergers Does Not Want To Be Cured But He Does Not Speak for My Son with Autistic Disorder

The major media is again featuring a high functioning person with Aspergers who claims that autistics don't want to be cured. In the Chicago Tribune.com Alex Plank offers the anti-cure ideology promoted by Jim Sinclair, Michelle Dawson and Amanda Baggs, all very high functioning persons with pervasive developmental disorders which are often casually referred to as autism spectrum disorders. Mr. Plank according to the article " has a girlfriend and is interested in computers, writing and acting." So why should Mr. Plank want to be cured? I am not sure how or why Mr. Plank, or family members, sought and obtained his pervasive developmental disorder diagnosis. Given his own self description it is hard to see why he was even diagnosed in the first place but he certainly is not qualified to make the statements about autistics not wanting to be cured.

Mr. Plank according to the Tribune article:

1. Is a college student and founder of a Web Community.
2. He has a girlfriend and is interested in computers, writing and acting.
3. Had friends and had no problem with eye contact or socialization.

Given the above description I can understand why Mr. Plank would not want to be cured although I am not sure what he could be cured of since it sounds like he is an ordinary functioning individual.

What Mr. Plank is not is a person with Autistic Disorder with profound developmental delays like my son. Unlike Mr. Plank my son does have problems with language and has cognitive challenges. He can not function in the world without 24/7 supervision. Occasionally he bites himself and he has put his hands through windows and smashed holes in walls. He does not understand all the dangers of everyday life like automobile traffic and he will not be able, like the fortune blessed Mr. Plank, to live an independent life with girlfriends, college and computers.

Mr. Plank though is offended that parents like me talk about the harsh realities faced by our severely autistic children because it makes him uncomfortable as an "autistic". He is also offended that parents seek treatment and cure for their own children which, given Mr. Plank's good fortune are almost assuredly more severely disabled than he. Mr. Plank, by his own self description, does not face the severe challenges that are faced by many autistic people with actual Autistic Disorder. He should be thankful for his blessings and quit posing as a spokesperson for all "autistics".

Mr. Plank, Michelle Dawson, Amanda Baggs, Jim Sinclair and other very high functioning persons at the upper end of the "autism spectrum" should be thankful for their blessings and stop attacking parents trying to help their own children. No one wants to cure you Alex, stop trying to keep my son and other persons with Autistic Disorder down so that you can feel better about the "autistic" label you have embraced.

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Deborah Coyne - Time Overdue To Put Autism On The National Agenda

Deborah Coyne has joined the Medicare for Autism Now team and will be one of the speakers when the team visits Oakville, Ontario on April 19, 2008 as part of a national initiative that will include speakers from BC to Toronto to New Brunswick. (AutismRealityNB will also be there).

Deborah has spent her life engaged in public policy work. She is a lawyer, university professor, constitutional activist, public servant, writer, small businessperson and the mother of two children, one of whom is on the autism spectrum. She has often been at the centre of the great public debates of our times -she became a leading figure actively engaged in the constitutional debates that unfolded involving the Meech Lake Accord and the referendum on the Charlottetown Accord. She is currently a policy analyst with an international consulting practice.

Deborah has also started a blog site Canadians Without Borders On the future of our great country, the challenges we face and what lies beyond the horizon . Yesterday was World Autism Awareness Day and Deborah wasted no time weighing in on the subject of Canada's need for a national autism strategy in Time overdue to put autism on the national agenda Medicare for the twenty-first century. I encourage everyone to add Deborah's blog to their blogrolls or blog links. Deborah's blog will be a source of well informed, quality, legal and policy perspectives on a number of important issues including a National Autism Strategy to ensure the proper effective treatment and education of all autistic Canadians - wherever they live in Canada.

It is now beyond debate that the most effective type of autism treatment is Applied Behavioral Analysis (ABA) – something which involves intensive one-on-one assistance to parents and their ASD child at the earliest possible age. ABA is an enormously valuable and justifiable investment in a huge and growing number of young persons who have a great deal to contribute to society and who need not be a heavy burden on the health care system as they grow older.

Provinces do try to meet the needs of ASD children, but in a haphazard ad hoc way generally through social services mainly for respite and support, not medical treatment. And much depends on the uneven ability of parents to access the necessary funding and services available. Only Alberta has complied with a court order requiring the province to fully fund the appropriate medical treatment for autism - ABA intervention - through the health care system.

Effective autism treatment of course impacts both health care and education. We need not only the investment in people to provide the services through the health care system – ABA specialists, speech therapists, child psychologists etc – but also the investment in the people needed to provide the services in the education system, notably one-on-one teachers’ assistants.

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UN Secretary-General Ban Ki-moon World Autism Awareness Day Comments

United Nations Secretary-General Ban Ki-moon praised the courage of children with autism and their families on the historic first World Autism Awareness Day as reported on AP:

"Let us pay tribute to the courage of children with autism and their families, as they strive every day to confront the disability with a powerful combination of determination, creativity and hope. Let us empower them and respond to their needs today, so as to make our societies more accessible, enabling and empowering for all our children tomorrow."

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Autistic Self Injury - Study Confirms Self Injurious Tendencies of Children with Autism Disorders

In Injury propensity among children with Autism Spectrum Disorders Clinical Psychologist and blogger Nestor L. Lopez-Duran Ph.D., host of Translating Autism, reviews a study which , in Nestor's words, "provides some compelling evidence indicating a higher risk of injury in children with autism as compared to typically developing children. "

The study - McDermott, S., Zhou, L., Mann, J. (2008). Injury Treatment among Children with Autism or Pervasive Developmental Disorder. Journal of Autism and Developmental Disorders, 38(4), 626-633. DOI 10.1007/s10803-007-0426-9 provides information which confirms what many parents already know - children with autism are more likely to be injured than typically developing children. Generally children with autism disorder are 21% more likely to be injured than their typical peers. Two specific injuries that jump out by their magnitude - children with ASD's are 760% more likely to suffer a poisoning injury and 762% more likely to suffer from a self inflicted injury than their neurotypical peers.

I am no fan of the thinking of those who assert that autism disorder is not in fact a disorder; that it is just a natural variation that should be embraced, but any condition which results in such serious levels of self injury is obviously a disorder. Period.

Interestingly, despite the extreme rhetoric of the "autism is beautiful" crowd which tries to smear parents seeking to cure their autistic children by insinuating that such "curebie" parents are responsible for atrocities like the murder of Katie McCarron the study provides no assistance to their argument - children with ASDs are not more likely to be injured by peers or adults.

As a parent controlling and minimizing self injurious behaviors is one of the several reasons why I use and seek ABA intervention for my profoundly autistic son. His reality includes self aggression. The Michelle Dawsons and Amanda Baggs can ignore that reality. As his father I can not and this study is a perfect indicator of why I can not.

Many thanks, again, to Nestor L. Lopez-Duran for highlighting and explaining this study.

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Run the Dream Celebrates World Autism Awareness Day

RUN THE DREAM LAUNCHES "THEIR STORIES" INITIATIVE

IN CELEBRATION OF UNITED NATIONS WORLD AUTISM AWARENESS DAY

Internet-enabled video interviews with parents, family members, caregivers, and persons with an Autism Spectrum Disorder will be recorded and made available for the public on the Run the Dream website.

April 2, 2008 is the first annual United Nations (UN) World Autism Awareness Day, fulfilling the UN resolution which encourages all member states to take measures to raise awareness about autism throughout society. In support of this resolution, Run the Dream is launching Their Stories, web-based video interviews with the persons most affected by an Autism Spectrum Disorder (ASD), who can best describe what it means.

Run the Dream invites parents, family members, caregivers, and persons with ASD to share their stories, via a video interview which can be recorded on the Run the Dream web site, http://www.runthedream.ca/stories.html#stories, starting immediately, and viewed on the same web site starting on April 2, World Autism Awareness Day. Stories will be recorded and shared with the public on the Run the Dream website until the run is completed at the end of November this year. Run the Dream will continue to share these stories by then compiling the videos from each province and presenting them to the respective Premier, and likewise will present all videos from across Canada to the Prime Minister. The Their Stories initiative is the very first of its kind in Canada using an automated web-based structured interview process, and based on our research, is a global first as well. This innovation is possible through the generous sponsorship of Minavox ( www.minavox.com) and the use of their ground-breaking Canadian-developed technology, Savisys.

In the few days since Jonathan Howard started his run, stories from across Canada have flooded Run the Dream's e-mail inboxes, "Jonathan Howard, created the concept of Run the Dream and started a cross-Canada run in support of ASD on March 25. Even though we're only in the beginning days of this journey we've already received touching stories and offers of support from a large number of Canadians who want to tell their story, and who want to help in making Run the Dream a success. In our view these stories are worthy of sharing with every Canadian. We're delighted that Minavox is making their software and service available to Run the Dream for this purpose," says Bill Robertson, Chairman of Run the Dream's organizing committee.

Working with Autism Society Canada (ASC) http://www.autismsocietycanada.ca/Run the Dream wants to ensure all voices are heard. Those people who do not have access to a computer or a webcam can share their stories using any PC with a webcam, including those of ASC's community partners, through the Their Storiesweb portal. "ASC represents a very large collective voice of the autism community in Canada; we applaud this opportunity to tell Their Stories", says Kathleen A. Provost, CFRE- Executive Director, Autism Society Canada.


This innovation is possible through the generous sponsorship of Minavox (www.miavox.com ) and the use of their ground-breaking Canadian-developed technology Savisys. "Minavox is proud to be associated with Run the Dream and Autism Society Canada, and to be able to provide its services to let Their Stories be heard." said Todd Nowensky, Managing Director and Vice-President of Business Development for Minavox Inc. Added Geoff Kushnir, Managing Director and Vice-President of Technology: "In our view this is one of the best illustrations of what is being described as the new era of the internet, Web 2.0."



Jonathan Howard, 24, McMaster University alumnus, and accomplished athlete developed the Run the Dream campaign to help raise awareness of the challenges faced by individuals with ASD and their families. Run the Dream is an eight month solo run across Canada, starting in St. John's, NL on March 25 and finishing in Victoria, BC on or about November 21. The run will cover approximately 9000km, crossing 10 provinces and more than 650 communities across the country. The campaign is targeted to raise $2.5 million to benefit children affected by ASD and their families. Jonathan appreciates the groundswell of support that has already formed behind his effort and would particularly like to acknowledge the contributions of the sponsors (listed below) of Run the Dream.


# # #


For more information on Run the Dream or to schedule an interview

with Jonathan Howard please contact

Alex Bittner at: alex.bittner@runthedream.ca, 888-507-5885 ext. 4.

For more information on Autism Society Canada please contact:

Lynn Andrews, Director of Communications:

lynn@autismsocietycanada.ca

For more information on Minavox please contact:

Ada Nowensky, VP of Marketing
anowensky@minavox.com


Run the Dream would like to thank their sponsors:

Telus – Official telecommunications sponsor for Run the Dream

Gatorade

Landmark Sport Group

Mariposa Cruises

Minavox

Evolution Rehabilitation and Personal Training Ltd

Whitewater Web Solutions

Brightworks

Spa Sensations

Lauren Canzius
General Manager, Media Relations & Communications
Run The Dream
lauren.canzius@runthedream.ca

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On World Autism Awareness Day Have Hope But Do Not Sugar Coat Autism Realities

History is being made today; the first World Autism Awareness Day as declared by the United Nations General Assembly. Qatar led the international effort to being about this result and that effort should not be overlooked or diminished. In North America and Europe there is a movement which has tried to romanticize and glorify "autism"and which actively attempts to suppress discussion of the harsher realities faced by many autistic people. Governments, particularly the Canadian government of Prime Minister Stephen Harper, have been quick to point to the views of people in this movement as an indication of lack of agreement on what should be done to help persons with autism thus justifying the Harper's government refusal to take serious steps to address Canada's autism crisis.

Almost everything about autism is controversial in the extreme. Debates roar on over the causes of autism. Even Applied Behavior Analysis, ABA, a well documented, well researched autism intervention is criticized relentlessly, often by people who have had no experience with ABA. Some of these people know nothing more about ABA beyond the extremist rhetoric of anti-ABA activisits who themselves generally have no experience and little real knowledge of ABA. The ABA critics ignore the millions of parents, thousands of autism experts, hundreds of studies and numerous professional reviews by responsible expert agencies which have endorsed ABA for decades as the educational and health intervention of choice for autism, an intervention documented by years of study as effective at making real gains in intellect, behavior, communication and socialization skills for autistic children

Even the mention of the existence of severely autistic or low functioning autistic persons offends some people. Within the world of autism there is an ideological group sometimes self referenced as Neurodiversity, which perverts logic and common sense and asserts that Autism Disorder is not in fact a disorder, that somehow it is a good thing that some children develop the limited communication, social and intellectual and behavioral characteristics that lead to diagnoses of Autism Disorder. Mention the reality, the FACT, that some autistic people hurt themselves very seriously by self aggression or that they lack understanding of the world such that they require 24/7 supervision and care, in some cases for the duration of their lives and the Neurodiversity ideologues react with sarcasm, hostility and anger.

While they are quick to search history and speculate that every known genius in history was an "Aspie" or an "Autie" the Neurodiversity ideologues do not want parents of children diagnosed with actual Autism Disorder with profound developmental delays to talk about their children's existence and challenges; challenges not shared by the ND cult. Mere mention of 14-year-old Kristi Jansen the severely autistic young lady featured in one of the Vancouver Sun's excellent Faces of Autism series is enough to set off anger and hostility on autism discussion forums like Autism Speaks now dominated by Neurodiversity advocates.

Accepting autism should not mean the kind of autism acceptance which views autism as a joy. Autism is a disorder. The people diagnosed with Autism Disorder who have limited communication and social skills, serious behavioral challenges and in some cases intellectual deficits, should not be ignored in shame and denial. Their realities too must be accepted. There is no "joy" in knowing that your child, diagnosed with Autism Disorder and profound developmental delays, will never know a life of independence, that he will be cared for by strangers long after you are dead.

My son Conor, diagnosed 10 years ago with PDD-NOS, subsequently changed to Autism Disorder with profound developmental delays. lifts my spirits every day and makes my experience of life richer and more meaningful. Although I do not find joy in my son's Autism Disorder I take great joy and find great happiness in him. I accept him and the fact that he has an Autism Disorder but instead of surrendering to the seductive logic of the Neurodiversity movement, instead of embracing his autism as a "good thing" I try to help him overcome the deficits which mark his Autism Disorder. That to me is true autism awareness and true autism acceptance. That to me is being a responsible parent.

Today I will be aware of Autism and I will discuss it with many people in my daily life. I will be of service to my son and other persons with autism by speaking the truth about Autism Disorder. I will tell people there is hope for improvement by intensive early ABA intervention and the incredible explosion of autism research, the Autism Knowledge Revolution know taking place, but I will not sugar coat the realities of autism disorders to make others .... or me .... feel better.

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Faces of Autism on World Autism Awareness Day

I do not hide my contempt for CNN's coverage of autism issues. CNN's coverage is, at best light and fluffy feel good stuff with little influence in the discussion of autism issues by people trying to actually help the many children and adults with autism disorders. At worst CNN coverage misrepresents the nature of autism and autism interventions. But there is some good media coverage of autism available. For World Autism Awareness Day I personally recommend that anyone interested in getting a realistic picture of autism try reading the Vancouver Sun's outstanding six part series Faces of Autism by columnist Pete McMartin with photos by Glenn Baglo.

Faces of Autism provides gritty, coverage of persons with autism, their life prospects and the impact that autism has on many families. The photos by Glenn Baglo are an honest portrayal of autism, particularly those of autistic 14-year-old Kristi Jansen who swings from crying to laughing to screaming in a matter of seconds. Kristi lived at home at the time of the series publication in April 2007. "Her body, home and family members -- especially her mother -- bear the scars of her violent outbursts that have only been calmed through years of expensive therapy."

Glenn Baglo's pictures of Kristi are very moving and strike a realistic chord for me as the father of a severely autistic 12 year old. She is shown smiling, laughing, crying and screaming. But she is never presented as the only face of autism. Faces of Autism emphasizes the range of autism realities. It is respectful, responsible and well informed coverage of autism and well worthing reading on World Autism Awareness Day - or any day.

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