Autism News Articles for May 2nd

MAILING FOR:

Tuesday, May 1, 2007

AND WEDNESDAY MAY 2^{ND== FORGIVE ME IF YOU GOT THE OTHER MESSAGES 2X}

Press Release

May 2, 2007

Alliance for Families with Autism Calls on Federal Government to Reply to the Senate with Swift Action on a National Autism Strategy

Ottawa - May 2, 2007 - The Alliance for Families with Autism (AFA) is calling on the federal government to respond to the Senate recommendations regarding the autism crisis in Canada with swift action towards the implementation of a National Autism Strategy (NAS).

Yesterday a motion by Senator Art Eggleton, the Chair of the Standing Senate Committee on Social Affairs, was introduced in the Senate requesting the federal government provide a “complete and detailed response” to the recommendations in its report titled “Pay Now or Pay Later: Autism Families in Crisis” which was tabled in the Senate on March 29, 2007. The Ministers of Health, Finance, National Revenue, and Intergovernmental Affairs are designated as responsible for providing the government response.

The Senate Committee’s report recognized an autism crisis in Canada and recommended that the government work with the provinces to develop a NAS and negotiate a funding formula whereby federal budget surplus dollars would be transferred to the provinces to fund autism treatment pursuant to national standards. AFA fully supports these recommendations and strongly urges the federal Cabinet to make the development and implementation a top priority.

“The facts speak for themselves. Recently the U.S. Centres for Disease Control (CDC) reported that the prevalence rate has reached 1 in every 150 children being diagnosed with an Autism Spectrum Disorder (ASD). To many people this is not just a crisis, but an epidemic. Yet, not one province offers autism treatment under Medicare. Similarly, many children with autism are not being properly taught in the public education system. The autism initiatives that Health Minister Clement announced on November 21, 2006, including the creation of a website and the holding of a future symposium, demonstrate a lack of willingness to take urgently-needed action. This is in sharp contrast to the U.S. where President Bush recently signed the ‘Combating Autism Act’. The situation requires the government to abandon its ostrich approach to crisis management and take swift action to address this national problem before it gets worse” said Sam Yassine, founding member of AFA.

“The Senate was absolutely correct when it reported that there was an autism crisis in Canada that necessitated urgent action and leadership on the part of the federal government. The federal Cabinet has had the Senate report for over a month and has not said a word about it. We urge the Prime Minister to recognize the need for action and to direct his Cabinet to stop ignoring the problem and take the necessary steps to develop and implement a meaningful National Autism Strategy” said Cindy DeCarlo, founding member of AFA.

- 30 -

For more Information, contact

Cindy DeCarlo

(705) 737-0417 advocate.4kids@sympatico.ca

Sam Yassine

(613) 229-4444 autism_yassine@rogers.com

The Alliance for Families with Autism

Backgrounder

Our Mission

Improving the lives of children and youth affected by autism. To provide factual information in a non-partisan approach to all stakeholders.

Our Vision

Ensuring that Canadian children and youth with autism reach their full potential by advocating and lobbying for timely diagnosis, assessment, access to evidence based therapy and services.

Objectives

1) Implement the recommendations from the Autism Reference Group Report February 2007 “From Evidence to Action” to the Ministry of Education and Ministry of Children and Youth Services.

2) Direct Funding Option/Direct Service Option choice for Autism Intervention Program with no waiting lists and seamless transition to similar programming in school boards for children who require ongoing support.

3) Standard certification for service providers with a regulatory body for behaviour analysts and therapists. Increasing the number of child psychologists to work with children and youth with autism.

4) Continuum of Government funded services and programs. Specialized services such as speech and occupational therapy need to be delivered in a timely manner. Programs such as Special Services at Home and Assistance for Children with Severe Disabilities need to support all families with autism and give clear guidelines for their key elements of administration.

5) Creation of National Autism Strategy that would include Federal-Provincial partnerships to ensure adequate resources and standards to provide Canadians with timely diagnosis, assessments, treatments, supports, and research.

We are presently developing our email list. If you wish to have more information about our group or would like to join our free email list, please contact us at autism_yassine@rogers.com

The autism community needs us all working together for their future!

Sincerely,

Cindy DeCarlo, Barrie Andrew Kavchak, Ottawa

Trish Kitching, Sudbury Pat La Londe, Kingston

John McVicar, Kitchener Lisa Prasuhn, Beeton

Sam Yassine, Ottawa

The Alliance for Families with Autism

Debates of the Senate (Hansard)

1st Session, 39th Parliament,
Volume 143, Issue 91

Tuesday, May 1, 2007

Study on Funding for Treatment of Autism

Motion to Adopt Report of Social Affairs, Science and Technology Committee and Request for Government Response—Debate Adjourned

Hon. Art Eggleton, pursuant to notice of April 26, 2007, moved:

That the twelfth report of the Standing Senate Committee on Social Affairs, Science and Technology, entitled Pay Now or Pay Later, Autism Families in Crisis, tabled in the Senate on March 29, 2007, be adopted; and

That, pursuant to rule 131(2), the Senate request a complete and detailed response from the government, with the Ministers of National Revenue, of Intergovernmental Affairs, of Health and of Finance being identified as Ministers responsible for responding to the report.

He said: Honourable senators, I rise today to speak about the twelfth report from the Standing Senate Committee on Social Affairs, Science and Technology, entitled "Pay Now or Pay Later, Autism Families in Crisis."

I wish to start by thanking the members of the committee who demonstrated great compassion and care toward Canadians with difficulties. This is the first study report that the committee has released since I became its chair, succeeding Senator Kirby, and I was impressed with the contributions of all members. This is once again a unanimous report, which puts forth sensible and attainable solutions to a serious problem.

As well, I wish to highlight the contribution of Senator Munson. On May 11, he began an inquiry, which turned into the order of reference that launched the study. Families across Canada owe him a debt of gratitude as he brought an important issue to the floor of the Senate.

Like most senators, I know the issues of autism from what I have seen in the media. Many stories have appeared regarding court cases, perhaps some of them highlighting protests by parents or announcements by governments — which do not seem to satisfy anyone. However, I did not really understand the depth of the issue.

Those stories do not fully portray the frustration and fear that parents of autistic children have. After hearing from researchers, interest groups, parents and autistic individuals, I can say that I better understand. Hearing the stories pulled at my heartstrings, but they showed the reality of the situation and proved that it needs our immediate attention.

We heard from parents and what they see in their children in crisis, with very little help forthcoming. The reaction of each of us when something threatens our children is to protect them.

Laurel Gibbons, a mother with a nine-year-old autistic son, testified that instead of using her son's health care card to access treatment, she relied on two other cards: her library card to research autism, and her Visa card to pay for treatment.

She added:

We were going to have to pay for any interventions, including ABA, as well as the recommended speech and occupational therapy that ran into thousands of dollars.

After re-financing our mortgage three times in the last four years, the money has run out. The speech therapy has stopped, as did the occupational therapy for his sensory issues. . . . We are still doing what we can piecemeal. I worry every day that I may have to relinquish my custody of him and hand him over to social services because he becomes unmanageable.

Honourable senators, after hearing that, how can we not act? How can governments not support these parents and how can we not expect parents to be frustrated or angry?

Treatment, honourable senators, can cost $60,000 a year, the committee was told time and time again. There is varied support from the provincial and territorial governments. Certainly, it is not equitable across the country. The majority of that $60,000 is coming from the pockets of parents.

The committee was pleased to hear from a number of adult witnesses who have autism. Their testimony was inspirational and touching, and it showed what the results of detection and treatment can mean. Their testimony leads to some of the recommendations contained in the report.

Mr. Kristian Hooker, from Selkirk, Manitoba, spoke to the issues that persons with autistic spectrum disorder face. He said:

A big problem with people facing ASD in society is that others often have a stereotype of how a person with ASD is supposed to look or behave. Many people with ASD could eliminate that stereotype but rarely get that opportunity, especially with a large group of people.

That is why one of our recommendations is for the inclusion of autistic individuals in both national public awareness campaign and the proposed symposium announced by the Minister of Health last year. It is essential that this group be represented at any table that discusses what to do to help people with autism.

Mr. Jason Oldford is 36 years old and was diagnosed in 1974. He supported the views expressed by Ms. Laurel Gibbons in her testimony when he said:

ABA is an expensive treatment. You have probably heard the figure $60,000 per year per child. . . . Parents put themselves on the verge of bankruptcy when they have to pay for that treatment out of pocket. I certainly understand the situation they are in.

The testimony of people like Jason Oldford and Laurel Gibbons is the reason that the committee recommended that the federal government convene a federal-provincial-territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy and that the federal government establish an appropriate level of funding — its appropriate share — in all of this. Parents are facing extraordinary costs to help their children, and what they need and ask for is help. They are asking their federal, provincial and territorial governments to help to alleviate this stress. The proposed meeting is not just needed, it must happen and must happen now.

Honourable senators, beyond these two significant recommendations of inclusion and a federal-provincial-territorial meeting, the committee further recommends: the creation of a public awareness campaign to enhance knowledge and understanding of ASD and the difficulties, the challenges and some of the great qualities and abilities that many ASD people exhibit; the creation of an autism knowledge and exchange centre and an internet-based web portal for reliable data for those seeking information on autism. The committee heard from many witnesses that there is too much confusing information.

The committee also recommends the creation of an autism research network and the provision of money for research through the Canadian Institutes of Health Research, because there remains much to learn about ASD disorders. The committee recommends that the federal government work with the provinces and territories to address the human resources issues, including training standards. The Province of Alberta provides funding, but they do not have the human resources; Ontario does not provide as much funding but has lots of human resources. There are problems right across the country of that sort, including training standards, which are so varied. As well, we ask that the Department of Finance study the implications of income splitting and other tax measures to help the families.

Pulling it altogether, the committee recommends that the federal government, in collaboration with the provinces and territories, establish a comprehensive national autism strategy, which is needed now.

The committee also noted that in Budget 2007 the government has taken steps toward helping parents — and I congratulate those who sit on the government side in this place on announcing the creation of a registered disability savings plan. However, this plan will help only some people tomorrow, not today, and today is the issue. Parents are going broke now and there is no money for tomorrow.

In the words of Jason Oldford — and I quote:

. . . if you pay for it now, look at the return you get on your investment. The people with autism will get out into 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.

Pay now, or pay later. Honourable senators, that is why we need to act today.

In conclusion, I thought I would use the words of my esteemed colleague and deputy chair of the Social Affairs Committee, Senator Keon: At committee, when asking one of his questions of witnesses, he said.

Our job is to come up with a plan that is good enough that government cannot say no to it.

Senator Keon said that, in his experience, plans are turned down if they are not good enough but that if they are good enough, they are never turned down.

The report of the committee contains good recommendations that will help families across the country to deal with this growing problem. I know we could have gone further, and many people wanted us to, but we had to make recommendations that could be and should be implemented — ones that are reasonable. These recommendations help to move us in the right direction on this issue, to show parents and autistic adults that they are not alone and that they have not been abandoned.

Honourable senators, I look forward to hearing from the government in respect of this motion on the twelfth report of the Social Affairs Committee and, more important, I look forward to the implementation of this report.

Hon. Gerry St. Germain: Would the honourable senator take a question?

Senator Eggleton: Yes.

Senator St. Germain: Autism has emerged in my life. As well, I have been approached by people in British Columbia on the issue. Does the honourable senator know, through his studies with the able assistance of Senator Keon, why has this illness has been neglected in the process of treatment? Why has autism not been recognized by provincial health authorities?

Is there an increase in the number of births of children with autism? Are there any scientific projects under way to determine whether diagnoses of this illness are on the increase?

I speak with sincerity, honourable senators, because I have a niece who has two autistic children. I have seen a beautiful young woman virtually deteriorate before the family's eyes.

The information given to me by some who are active in British Columbia on this issue has clearly stated that there appears to be an increase in the number of births of autistic children. Could the honourable senator clarify that point? Did the committee's study reveal why the issue has not been addressed by provincial health authorities and Health Canada?

Senator Eggleton: I thank the honourable senator for the excellent questions. It is not clear whether there has been an increase in the number of births of children with autism. However, it is clear that there is an increase in awareness of autism, with earlier diagnosis and earlier treatment for some, but not for everyone because not everyone can afford it or access it readily. Certainly, there is an increase in awareness but an increase in the numbers is not clear from the studies to date.

With respect to health, one of the difficulties with autism spectrum disorder is that it covers more than one field. It is not only a question of health. They go to doctors and clinics, but many things would come under the social service umbrella or even the education umbrella. Also, many costs relate to the fact that many of these young people require one parent to stay at home. It is extremely difficult for both parents to work.

The Hon. the Speaker: Honourable senators, it being six o'clock, I am obliged to leave the chair unless there is consent not to see the clock.

Hon. Gerald J. Comeau (Deputy Leader of the Government): I propose that we give the senator a few moments to conclude.

Hon. Senators: Agreed.

Senator Eggleton: This is why we think we need a national autism strategy. We need to pull together the governments at different levels to work out how we can cross the lines of health care, education and social support services, and what to do about the loss of income for parents. All these things create enormous financial and emotional pressures for these people.

This is why we have suggested that we need a strategy. We need the symposium that Minister Clement recommended, which would include people in the autism field. We also need the federal and provincial governments to come together to work on this national strategy.

On motion of Senator Cowan, for Senator Munson, debate adjourned.

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No Link Between Autism, Celiac Disease: Study

Published: Tuesday, May 1, 2007 | 9:52 PM ET

Canadian Press

TUESDAY, May 1 (HealthDay News) - Autistic children are no more likely than other children to develop celiac disease, according to an Iranian study that challenges the findings of previous work.

The team analyzed blood samples from 34 autistic children and 34 children without autism. The researchers checked for two antibodies - anti-gliadin and anti-endomysial antibodies - used to help detect celiac disease.

In order to confirm whether they had celiac disease, biopsies of the small intestine were offered to the six children (four with autism, two without autism) who tested positive for either antibody. Biopsies on all six children were negative for celiac disease.

The researchers concluded that autistic children aren't more likely than those without autism to develop celiac disease.

"This study shows food allergies often associated with autism may have no connections to the gluten intolerance experienced by people with celiac disease," study author Dr. Samra Vazirian, Tehran University of Medical Sciences, said in a prepared statement.

The study was expected to be presented this week at the American Academy of Neurology's annual meeting, in Boston.

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From

The Times in New Jersey (Not Canada) but an unfortunate story..

Floodwaters ruin center for autism

Wednesday, May 02, 2007

BY LISA RICH

WEST WINDSOR -- The rancid smell of sewage and mold lingers in rooms at a center that is relied upon by autistic adults.

The Eden Family of Services' Briggs Center, which has been standing vacant and awaiting repairs since more than 4 feet of water from last month's nor'easter surged into the building, is used by approximately 89 autistic adults in pursuit of jobs and other assistance.

Never before has the Briggs Center, a nonprofit group that aims to find jobs and provide coaching for autistic adults, endured anything similar to the chest-high flooding that poured in April 15 and 16. The source of the flood: The Little Bear Brook adjacent to the building on Washington Road.

The water covered the building's first floor, damaged all the contents, and brought with it an unforgettable stench, officials said.

"A horrible, musty smell that you can taste in your mouth is still there. It's a nightmare, the smell is absolutely horrific," said Jamie Douglas, director of employment services for Eden Family Services, which is one of the nation's leading treatment centers for autistic children. "It's never been like this, not even from Hurricane Floyd eight years ago."

The storm interrupted the daily operations of a center that has helped make New Jersey something of a mecca nationwide for research and treatment of autism. Central New Jersey is home to several schools dedicated to combating autism, a center that is a clearinghouse of autism-related information, and a group of activists involved in researching causes, prevention and cures.

The damage left behind from the recent storms has kept the center shut down, Douglas said, creating a major inconvenience for the agency's staff members and autis tic adults.

"This whole experience has been exhausting. We're looking at several months until the downstairs is ready to reopen, and hopefully the upstairs will be functional in a few weeks," Douglas said about the building's separate work facility centers on each floor.

The first floor of the Briggs Center is devastated. The walls and carpeting have been stripped, and all of the equipment has been lost. Refrigerators, computers, desks, office equipment, washers and dryers -- all have been destroyed and need to be replaced.

The center's 89 participants and 49 staff members are now operat ing out of the Clayton Center on Old Trenton Road, Douglas said. The offices also have been relo cated there inside a single conference room, she said.

Though the employees are hop ing to maintain business as usual, Douglas said it's been quite the opposite.

Usually, the participants are taken to the Briggs Center by the agency's employees, who pick up the members at their parents' houses or residential group homes. At the center, they are coached by staff, who later take them to work at various businesses in Hunterdon and Mercer counties, Douglas said.

But all that has changed -- at least, for the time being.

Instead of using the Briggs Center as the main hub for the participants' training and resources, the agency's staff members now have to travel to each of the individuals' homes.

In addition, the nine Briggs Center vehicles, including four 15-passenger vans, were damaged by more than a foot of water, said Rick Alcantara, coordinator of supported employment.

"It's had a huge impact on us, we've lost a lot of our transportation capabilities, on top of the other damage that needs to be repaired," Alcantara said. "Employers are counting on us, and they ex pect the participants to be at work every day. We know how valuable our services are, and providing it lately has been difficult."

Aside from ensuring that every participant is coached and taken to work each day, the Briggs Center has a lot of cleaning -- and purchasing -- that still needs to be done.

Insurance will cover a portion of the hundreds of thousands of dol lars needed to restore the building, but agency officials said for the most part, they're on their own.

"Our operating budget is fully funded by the state Department of Human Services, but we own the building and carry the insurance, so unfortunately, the state will not give us any funds for repairs," Douglas said. "If we run out of money, we'll have to tap into our foundation's fund-raising money."

So far, Douglas said they've received estimates that replacing the contents inside the building will cost about $70,000 in addition to the $150,000 needed for construction and repairs. And that's just the beginning, she said.

"It's going to be big," Douglas said. "Right now, we know that we'll probably be in the hole. We hope that generous businesses, or individuals, will want to help us out."

The Briggs Center is open to ac cepting donations of many kinds, whether it be kitchen and electrical appliances, office supplies and equipment, vehicles, or money.

Those who wish to inquire about donating can call Andy Armstrong, director of fundraising, at (609) 987-0099.

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Many options, little research makes choice difficult; Parents seeking an alternative to widely endorsed Lovaas ABA face a frustrating lack of data on other therapies' effectiveness
The Vancouver Sun

Apr 27, 2007
Page: A11
By: Pete McMartin
If parents are desperate enough -- and few are more desperate than parents of children with autism -- they will try anything that might make their child better.

Hyperbaric chambers, for example:
Michael Jackson made them famous, but in Richmond, there is a hyperbaric clinic parents can take their children to for sessions. The theory is, the chamber increases blood flow to the brain, reducing "oxitave stress" and increasing the production of healthy cells.

Or there is chelation therapy. Some believe that heavy metals like mercury and lead contribute to or cause autism, and therefore need to be removed from the body by treatment.

Or secretin, which entails the injection of a hormone extracted from pig intestine.
Or swimming with dolphins. Or therapeutic horseback riding. Or music therapy. Or megavitamin therapy.
Or Teacch, Floortime, RDI, Higashi, Jacob's Ladder, the Denver Model, the Miller Method, the Irlen Lenses, SCERTS, Holding Therapy, gluten-free and casein-free diet, Son-rise, Hemi-Sync, and on and on.

The granddaddy of all, and the most widely used, is Lovaas ABA -- or Applied Behavioural Analysis. UCLA psychologist Ivar Lovaas pioneered autism therapy in the late 1960s by employing discrete trial teaching, a method which breaks down skills into small tasks that the child, through repetition and reward, learns how to master. The therapy is expensive and arduous. It requires up to 40 hours a week with a team of interventionists.

In 1987, Lovaas published a landmark study of a group of 19 children with autism. It claimed that after early intervention of 40 hours a week for at least two years, nine of the 19 children improved to the point that they could enter elementary school classes. It was one of the few controlled studies that demonstrates some measure of efficacy. Subsequent studies, however, have shown more mixed results -- some of which mirrored Lovaas's original success, some of which fell short. Nonetheless, Lovaas is still the therapy with the most science behind it.

Another ABA-style therapy enjoying popularity in B.C. is Verbal Behaviour, which employs much of the discrete trial method that Lovaas does but takes a differing, language-intensive approach. To put it in very simplistic terms, one aspect of Verbal Behaviour encourages children to first learn words as a means to express their needs, as opposed to the rote learning and understanding of that word.

As alternatives to the ABA-style therapies, which some parents find too rigid and too adult-directed, other newer therapies have arisen in the last decade.

Some of these are under what is known as the SDR umbrella, or social-developmental-relationship-based therapies. These, in effect, attempt to draw the child out and establish relationships so that they might react to the world more normally. One such therapy is Floortime, where therapists actually join the child in play on the floor as a means of establishing a relationship.

There are also combined approaches, like Teacch (Treatment and Education of Autistic and related Communication-handicapped Children), a highly visual therapy that uses pictures and other stimuli to encourage children to concentrate and interact with their peers.

Also, as the number of therapies has grown over the years, many parents are adopting a hybrid approach to treatment for their children, taking elements, say, from both the ABA and SDR schools, while exploring things like gluten-free diets and megavitamin regimes. The thinking is, every child is different, and cannot be shoe-horned into a single approach.

The dilemma with the newer therapies? While many have been studied on a single-case basis, and parents will, in some cases, testify to their effectiveness for their child, there is an absence of clinical trials to compare them and little data behind them.

It is because of this that FEAT-B.C. -- Families for Early Autism Treatment of B.C. -- insisted the provincial government recognize Lovaas ABA as best practice and fund only it. In the late 1990s, it took the government to court to force it to do just that, winning at the provincial level but losing in the Supreme Court of Canada.

While its legal battles did pry some funding from the government, FEAT's insistence that Lovaas be recognized to the exclusion of all other therapies alienated parents who did not use Lovaas, not to mention those clinicians and academics who saw room for other therapies.

"The thing is," said UBC Prof. Pat Mirenda, who runs a graduate program for autism studies, "we still don't know how to look at a kid who's two or three or four or whatever, and match a kid to treatment. We don't what treatment is going to work best for what kid.

"I think [Lovaas] can be incredibly effective for some kids. For many kids. Not for all kids. And I won't say that that treatment is the only treatment that is effective and appropriate for all kids because I don't think we have the data to support that.

"Now, the Lovaas people will tell you, of course, that Lovaas is the best treatment for all kids, but that's just categorically not true. I mean, there are kids whose families try that approach, and it doesn't work particularly well for them, and they stop doing it."

One was Cyndi Gerlach of North Vancouver. Gerlach has two boys with autism, the eldest of the two, Colin, being severely affected. She started him out with Lovaas but stopped after a couple of days. She felt it was too gruelling a protocol.

"I didn't like the program. I thought it was too adult-controlled and didn't respect the children for who they are. And what I had seen didn't make me feel comfortable as a person."

Another parent who started their child out on Lovaas but changed therapies was Deborah Pugh, once executive director of the Autism Society of B.C. and now director of research for Autism Community Training, the government-contracted organization that maintains a list of autism services in the province. Her son, Adam, now 16, was diagnosed at age three as being severely autistic.

"When I started doing ABA with Adam," Pugh said, "I saw all this progress with him, and I thought I knew it all. ABA was Lovaas, that was the way to go. And I was pretty cocksure.

"And then I started working at the Autism Society of B.C. and I met all kinds of families who didn't do ABA whose kids were making a lot of progress with different approaches. It made me realize that what worked for my kid didn't necessarily work for other kids."

Over the years, Pugh has modified Adam's therapy to a mixture of approaches. He continues to make progress.
The relationship between FEAT and non-FEAT practitioners hasn't progressed, though.
A rancourous and sometimes mean-spirited split remains.
Said UBC's Mirenda: "I'm not at all being disingenuous when I say this: I think that the whole situation is an incredible Greek tragedy. I honestly believe to the depths of my being that those [FEAT] families [who took the provincial government to court] are heroes. If they hadn't done what they did, I do not believe there would be anything in this province of treatment for young kids with autism. They were pioneers, they were leaders, they were heroes. And we should all be kissing their feet, because there is something for kids with autism in this province. And it's a good thing.

"And the tragedy is, in many ways, they won, but they feel like they lost. And rather than be celebrated as heroes and as pioneers, there's this incredible split in the community about that group of families."

pmcmartin@png.canwest.com or 604-605-2905
See Saturday's paper for Pete McMartin's column on what should be done for families coping with autism.
see www.vancouversun.com for the full series, plus photo gallery
___________________________________________
Letters | Promise to autistic must be kept
The Daily Gleaner (Fredericton)

Apr 27, 2007
Page: B7
Section: Opinion
An open letter to Hon. Andy Scott, MP for Fredericton:
I am writing you today because I am a single mom of a two-year-old girl who was recently diagnosed with autism. She is my world; she is beautiful, smart and funny.

Autistic children deserve as much help and support as any other child with a disability. These children, with the help of therapists and other trained professionals, can develop into wonderful,

productive adults.
I want to see my daughter and all other children with autism get the help they need for as long as possible. Giving these children the resources they need only until they are school-aged is a slap in the face.

Parents of autistic children work hard to get them to a level of development by the time they start school. All that work is lost once the child starts school and funding for intervention therapy is cut off. If parents cannot afford to continue the therapy, these children will slip back into old routines and behaviours.

I worked with autistic children before I had my daughter and have first-hand knowledge of the wonderful work that can be done. We were lucky that I was able to detect a problem with my daughter earlier than many parents. Others are not so lucky. They are diagnosed late and miss out on much of the therapy available.

I am asking you to do what your party has promised: help our children get the help they desperately need and deserve.
I will continue to do everything in my power to see my daughter has the best life possible. I am asking you to do the
same.
Melanie Watt
Fredericton
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'Thank-you for giving parents the words to cry with'
The Vancouver Sun

Apr 27, 2007
Page: A16
Section: Editorial
Edition: Final
Byline: Claudette Sandecki
Government stalling and ineptitude are as frustrating for the therapists waiting for the go-ahead to treat autistic children as for the families awaiting diagnosis and treatment for their children. Maybe this service and Passport Canada are guided by the same philosophy.

Claudette Sandecki
Terrace
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'Thank-you for giving parents the words to cry with'
The Vancouver Sun

Apr 27, 2007
Page: A16
By: Terry Hilmar
Untreated autism costs the North American economy $33.5 billion US a year, according to research at Harvard University. Therefore, government refusal to fund treatment is counter-productive. It also puts extreme financial and emotional stress on families with autistic children. Even some affluent families have faced bankruptcy or lost houses to pay for the costs of autism treatment, which averages $43,000 a year or can rise to $60,000.

The myth that there is no money for autism funding is a fallacy. The same naive arguments have been made against general health care insurance, education and better hospitals.

Nor does segregation on the cheap ever work. Dr. Pat Mirenda of the University of B.C. education faculty has said that "30 years of study show integration into an education system with adequate support works much better for autistic children than segregation." He also said, "Autism is a very complicated social-communication disorder. [You cannot] put kids who don't know how to talk, play or interact into a room with other kids who don't know how to talk, play or interact. It's a really bad idea."

There is enough money, but what is lacking is the political will to spend it appropriately. In the long run, funding to treat autism will save billions.

Terry Hilmar
New Westminster
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'Thank-you for giving parents the words to cry with'
The Vancouver Sun

Apr 27
Byline: Siobhan-Louise O'Keefe
I have a six-year-old autistic nephew in England. I have been begging my sister to move here so I could help out and give moral and physical support to her and her family (she also has a four-year-old girl) because I thought surely British Columbia would have a good support system for this disorder, better than England in any event.

I immediately ceased my entreaties after reading Pete McMartin's articles. Our system seems to be downright abusive of autistic children and their families. Their treatment flies in the face of decency and humanism -- never mind common sense.

What happens when autistic children become adults -- when the money runs out (if there was any to start with); when the parents are unable to control a grown man who did not benefit from enough therapy when growing up?

We are condemning these families to a life of unrelenting stress, and financial and physical risks.
Siobhan-Louise O'Keefe
Vancouver
Photo: Siobhan-Louise O'Keefe, with her children Pascale and
Gabrielle at a family party, has changed her mind about bringing her
autistic nephew from England to B.C.
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'Thank-you for giving parents the words to cry with'
The Vancouver Sun

Apr 27, 2007
Page: A16

By: Dawn Steele
Re: Faces of autism series, April 21-27
Pete McMartin's extraordinary series has made me, an autism parent, cry over my morning coffee every day. I feel sadness, but also huge relief and release to finally have someone telling the world so clearly and eloquently the stories that we've been screaming about in a soundless vacuum for years. No one seemed to hear them or care; we felt powerless to turn on the volume or to figure out how to say it so that someone would understand.

Vancouver artist Mai Thompson, a former Vietnamese refugee, had a gallery show a few years ago that featured a painting inspired by her own past nightmares and a nephew with autism. It was a beautiful, haunting abstract with dark tones and jumbled, half-hidden alphabet blocks, titled something like "I don't have the words with which to cry." I took one look and spent the rest of what was supposed to be a rare girls' night out crying about it.

The next morning I cried again over a story shared by Jeanette Holden, a leading Canadian autism researcher, celebrating the fact that her brother finally learned to talk at age 50, and reminding us that it's never too late to hope. My son did finally learn, in his own way, to do what so many others still can't. At the time, I saw Mai's painting as being about our children, but I guess it's about the families, too.

Thank-you seems such a small thing to say for giving us parents the words to cry with.
Dawn Steele
Vancouver

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The opportunity to demonstrate your support for 1 in 5 children and youth who are troubled by mental health issues, is still open. Life long mental health difficulties so often start in our young. With your help, our efforts to bring this issue the attention it needs can be achieved.

By May 13th, the end of Children's Mental Health Week, we aim to have 5000 names on our petition.

So far we are almost 20% along and look for your help in moving this number up.

This petition will not only be sent to the heads of our provincial parties, we can use the strength of its numbers to bolster our messaging in upcoming meetings and other advocacy efforts.

If you have not already signed the petition, you still have time.

• Log on to http://www.parentsforchildrensmentalhealth.org/ then click on SIGN OUR PETITION
• Be sure to forward this email to your family, friends and colleagues.

Thank you

Consumers and Advocates Committee of the Provincial Centre of Excellence for Child and Youth Mental Heath

Parents for Childrens Mental Health

Youth Net/Réseau Ado

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Underfunding pushes Vancouver School Board to make huge cuts to ESL and

special needs service, say teachers

VANCOUVER, April 30 /CNW/ -- VANCOUVER, April 30 /CNW/ - "The 

province's

funding formula and chronic underfunding of school boards is hitting 

ESL

students and children with special needs the worst," says Glen Hansman,

President of the Vancouver Elementary School Teachers' Association.

"Nowhere is that more apparent than in the Vancouver School Board's

proposed budget for next year." 

The VSB's proposed budget, which is set to be passed at tonight's Board

meeting at 7 p.m., includes the elimination of 35 FTE special education

assistants and 132.6 FTE teaching positions - the majority of which are

teachers of ESL and teachers for special needs learners. 

"Teachers in Vancouver do not blame the trustees for this situation,"

says Glen Hansman. "Adequate funding of the public education system is

clearly the responsibility of the provincial government. Unfortunately,

what the Ministry of Education provides in grants has not kept up with

inflation, nor does it recognize the true costs of running an urban

school district with diverse needs like Vancouver." 

Teachers also point to the Ministry's five-year-cap on funding for ESL

students as a major contributor to this problem. "Per-student funding

for ESL students has not increased in 11 years," says Glen Hansman. 

"And

the money that is received is limited to an ESL learner's first five

years of support. Not all ESL students are able to master the nuances 

of

the English language in five years!" 

Funding for autistic students is also a problem. "The Vancouver School

Board only received $16,000 per student with autism, a dollar amount

that has not increased in six years. That amount only pays for about

half a Special Education Assistant. What about the rest of the cost

involved with providing children with autism with proper support? The

VSB spends twice the amount of special education service than it

receives from the government." 

Teachers are pleased with the number of parents who are speaking out on

the underfunding issue. "We encourage as many people to come out to 

this

evening's Board meeting to see what the final decision made by the 

Board

turns out to be," says Glen Hansman. "We hope they minimize the cuts,

but realize that they are in a tough spot that is not of their own

creation." 

___________________________

Letters 

New Brunswick Telegraph-Journal 

May 1, 2007 

Page: A4

Section: Opinion

MPs fail autistic children 

Ottawa does occasionally take action... just not for our autistic

children. 

It has been over five months since the House of Commons passed a motion

(by a vote of 231-45) calling on the Government of Canada to create a

National Autism Strategy. M-172 from Andy Scott, Liberal M.P. for

Fredericton requires the federal government to work in co-operation 

with

the provinces and territories to establish national standards for

treatment and delivery of services, study funding arrangements, create 

a

national surveillance program, and provide more funding for health

research on autism. Andy Scott along with Peter Stoffer, NDP M.P. for

Sackville-Eastern Shore have both blasted the federal government for 

not

providing funding in the 2007 budget to help families with autistic

children. 

It has also been over a month now that the Standing Senate Committee on

Social Affairs, Science and Technology has released its report on the

funding for the treatment of autism: "Pay now or pay later: autism

families in crises." Senator Art Eggleton will move that the Senate

request a complete and detailed response from the government, with the

ministers of National Revenue, Intergovernmental Affairs, Health and

Finance being identified as ministers responsible for responding to the

report. 

With the proper support structures in place now, autistic children will

have the greatest chance to reach full potential. 

The cost to society for inaction will be enormous. 

BRIAN RIMPILAINEN 

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This special request from a listmate, please contact her directly via email if you can help. Her location and child’s name is hidden for their protection.

Sent: Sunday, April 29, 2007 8:40 PM

I am trying to find an ABA/IBI therapist who would be interested in working with ****** this summer. 3 or 4 times a week for 3 hour sessions. Please mention the basics that you need to. He is 11 years old and lives in ******. I don't know how you want to work it but they can email me or you can forward them to me.

I am also looking for a CDA student or Graduate to work with ******* for 1/2 hour sessions 3 times a week, with hours to possibly increase if tolerated. I would also be interested in hiring a DSW graduate if I am unsuccessful in finding an ABA/IBI therapist.

*********************************

fourfries@rogers.com

Elisa

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Monday April 30, 2007

INTERACTIVE MEDIA:

Apr 28, 2007 10:10 AM

Do you want to learn more about autism and help children with it?

Together for Autism, a fundraising and awareness day, is being held at the Lebovic Leisure Centre next Saturday from 10 a.m. to 3 p.m.

Toonies can be donated for the campaign.

There will also be a silent auction featuring a round of golf at Sleepy Hollow Golf and Country Club and wine tasting at Willow Springs winery.

A public swim goes from 2 to 4 p.m.

Autism awareness materials will be available, courtesy of Autism Ontario's York Region chapter

Providence Learning Centres: www.providencelearningcentres.org

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And this story for our Newfoundland Friends!

http://www.thecoaster.ca/index.cfm?iid=2491&sid=21159

Living with autism

Clayton Hunt
The Coaster

Autism, a developmental disability that results from a disorder of the central nervous system, seems to have burst on the North American medical scene since 1990.

The Autism Society of Canada reports that the current prevalence in children, mostly boys, is roughly six per cent or one in every 165 children.

Four children with autism attend St. Joseph's Elementary School in Harbour Breton. Isaiah Jackman and Shawn Skinner are two of those students.

Autism is now recognized as the most common neurological disorder affecting children and one of the most common developmental disabilities.

Approximately 190,000 Canadian children have been diagnosed with some form of autism, which can range from mild to severe as individuals with autism tend to be diverse. Autism conditions show themselves in many ways. There are characteristics common to all autism but a person with autism will not have all of those characteristics and they will vary in severity.

The three classic common characteristics that all autistic children display to some degree are impaired ability to engage in social interaction, impaired communication skills and specific behavioural patterns such as repetitive behaviours.

Isaiah is the eight year old son of Curtis and Natalie Jackman and is a grade two student at St. Joseph's.

His mother said they knew there was something wrong with Isaiah before he was formally diagnosed with autism at three years of age by Dr. Cathy Vardy, a Development Pediatrician.

“We knew from his lack of speech, his odd behaviours such as spinning a sock around by the toe until you would actually get him to stop and from little things he did that did not fit in with quote 'normal' child development."

Isaiah was diagnosed with autism in September 2002 and started his Applied Behavioural Analysis (ABA) in January 2003.

"An autism diagnosis brings a sort of instructional manual for the child. I called it our new bible,” said Ms. Jackman. “From January 2003 until Isaiah started kindergarten we had two therapists work with him for six hours a day (three hours each) on his ABA program. The program said if you want certain things done this is how you do it. If you want him to say cookie this is how you do it."

Ms. Jackman said the ABA program really helped her son.

“An autism specialist would actually plan the programs for Isaiah. He had very limited speech when he started the sessions because he stopped speaking earlier. Today he can talk in sentences and ask and answer questions as well. It's amazing how far he has progressed in this area."

Ms. Jackman said Isaiah lost all home supports when he started school full time in grade one.

"Although Isaiah has good supports at school, I still wish he had some of the help he had at home. He has come a long ways but I feel that he is capable of doing much more."

Both Isaiah and Shawn receive intensive support at St. Joseph's School as they both receive criteria G categorical support and non-categorical regular special education support.

Ms. Jackman noted that Isaiah lacks in social ability and will not make the first contact to play with children.

"He is not a big lover of the outdoors anyway. Isaiah tends to like older children as they are usually more predictable. He is changing in this area though, and he can go to birthday parties now and take part in the various games played at those events."

Ms. Jackman described a typical non-school day for Isaiah.

"He'll get up, have breakfast, play his video games, cars and ninja turtles. He may help make sandwiches for lunch. He might go outdoors for a while after lunch or read a book or play his games again. His day is not so different from a child's who does not have autism."

However, living with a person with autism can be very challenging requiring tremendous patience and understanding of the disorder says Mrs. Jackman.

"It can be mind boggling raising a child with autism. Today, for example (April 25), Isaiah came home for lunch and didn't want pizza. Now, pizza had been a favourite food of his up to today. He may want pizza again for his supper today. You have to learn to pick your battles with a child with autism. With Isaiah you always have to have a choice ready. If you don't want pizza you can have a hot dog or a cheese sandwich. If you don't want to go for a walk you can go out on the swings. There has to be a choice.

"Sometimes, you have to let him know in advance he has to do something. For example, I’ll tell him he has an hour before bedtime. Then I'll remind him he has 30 minutes before bedtime. About 15 minutes before he goes to bed I'll ask him if he wants to read a book or talk before he goes to his room.

Ms. Jackman said every day is completely different and there are always new behaviours coming up with Isaiah.

“I have learned to rearrange how I talk to him so I can get a response. You have to get him used to a routine for doing certain things. You just can't say we're going outdoors. He has to learn the routine of putting on his jacket and boots before he actually goes outdoors.

"In raising Isaiah I'm reminded of the poem about the woman who was going on vacation. When she got to Holland the locals welcomed her to the country, but she said 'I wasn't going to Holland'. When you're having a child and you get your child who has autism you could say, 'but I didn't want a child with autism.' But this is what you were dealt so you say we'll live autistic lives. We have to rearrange the way we normally probably would do things to include Isaiah in them. You learn to live with the condition and to adjust to your situation."

Shawn Skinner is the eight year old son of Andy and Treena of Harbour Breton. Shawn was diagnosed with autism in November 2001 when he was three years old. Today, he is a grade three student at St. Joseph's Elementary School.

"Shawn was a typical child up to about two years of age,” his mother said. “But then I lost him. It wasn't like a physical loss but it was an emotional loss as he stopped speaking. At first we thought he was deaf as he stopped paying attention to us"

After about a year of traveling between Harbour Breton and Grand Falls-Windsor to treat Shawn for apparent deafness he was diagnosed with autism by Dr. Cathy Vardy in November 2001. In February 2002 Shawn started receiving the six hours of home therapy with the ABA program which is aimed at helping children with autism.

“That was a pretty intense therapy program for both me and Shawn. He would want to leave the sessions at times but he wasn't allowed to. He would say 'Mommy, save me' or 'Mommy, help me.' I had to stay upstairs until the session was over."

However, the therapy was a great help and really helped prepare Shawn for Kindergarten.

"Kindergarten was a breeze but the walls came tumbling down in grade 1. Today Shawn is in grade three and still finds it hard to focus on topics. He can't read and he has no math comprehension."

Like many autistic children Shawn lives by routines.

"When he comes down in the morning he has to be covered up a certain way in his blanket. When he's lining things up they have to be stacked in a certain way. These routines are not as bad as they were but they're still there. Shawn is doing pretty good with social interaction at school as they have a buddy system for him at recess times. I find that Shawn interacts better with kids younger than him. To me he has the ways of a four to five year old. He's eight but he's behind.

"I find kids his own age don't want him around.

They can't wait for Shawn to learn the rules of a game and they don't have the patience for him to grasp how the game is played. Shawn was late speaking but his communication skills are getting pretty good now. He can answer and ask questions although he doesn't understand 'why' questions too much. He can have a little bit of a conversation with you but he gets bored very quickly.

"Overall, I'm pretty pleased with how Shawn is doing. He is having his best school year so far in grade three this year. He is starting to develop his own personality traits, he knows what he wants and when he wants to do something, He has clashes now with his sister Ashleigh who is in grade six. And do you know what? I love it because it shows some normalcy to me. It's wonderful! Wow! They're not getting along! Great! Brothers and sisters should not always get along."

Although she is pleased with his overall progress, Ms. Skinner said it’s Shawn's anxieties that worries her the most right now.

"Anything can bring on anxiety for Shawn. We try very hard not to upset him at all before he goes to school. He can become upset because the grass is wet or by one of us touching him in the porch in the morning. If we upset him before he goes to school he will be more difficult to settle down at school. When he comes home in the evening he can cry as he remembers he was upset that morning. Anything can disrupt him and it takes a long time for him to get over it.

"Then when I get frustrated he will say 'Mommy mad' and I'll say 'Mommy will be happy when you're happy. But it doesn't work as I have to be happy first. He can get very anxious and I have to watch for signs of depression in Shawn even though he's only eight years old. Some days, at the end of the day, it all plays on your last nerve."

Ms. Skinner said you need a lot of patience raising a child with autism.

"For parents who have a child with autism I would say just accept it, have patience and move on. You definitely need patience, patience and more patience and a little more love for a child with autism. Autism won't go away because you want it to. You can scream at the moon and blame this one and that one but it's not going away.

"When Shawn was diagnosed with mild to moderate autism I was told that he should grow up to be lead a normal adult life. However, I can't see this yet. I know he's only eight, but right now I can't see him leaving me when he finishes high school."

According to Wikipedia, the free encyclopedia, the incidence of diagnosed autism has increased since the 1990s due to better diagnosis, wider public awareness of the condition, regional variations in diagnostic criteria and an increase in the disorder.

A CBC in-depth news study on autism no one is certain as to what causes autism. Its causes could be related to genetics, differences in brain functions, environmental factors, viral infections and immune response deficiencies. There is currently no known cure for autism.

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And this from a Cycle For Autism Event!

Way to go North Bay ASO!!!

For a pic go to: http://www.nugget.ca/webapp/sitepages/content.asp?contentid=507873&catname=Local%20News&classif=

Walkers, riders raise $4,000 for autism

Gord Young / The Nugget
Local News - Monday, April 30, 2007 @ 08:00

Local families hit the Kate pace Way Saturday with friends and other supporters to help raise funds for autism.

Approximately 80 participants raised more than $4,000 to support local families living with the developmental disability by taking a four-kilometre trek along the city's waterfront.

Organizer Michelle Robinson, president of the local chapter of Autism Ontario, said the event, the first of its kind in North Bay, will be held annually to raise awareness and continue providing support for those with autism and their families.

Robinson, whose seven-year-old son is autistic, said the funds will be used to host workshops and other programs, including those aimed at helping parents meet the needs of their autistic children.

She said parents raising children with autism are always learning because they must constantly adapt to their child's changing behaviour.

It is one of the most common developmental disabilities, according to Autism Ontario, which cites recent studies indicating the prevalence rate of autism is one in 165. In Ontario, there are an estimated 70,000 individuals with autism, yet most of the public, including many professionals in the medical, educational, and vocational fields, are still unaware of how autism affects people and how they can effectively work with individuals with autism, the group says.

End of May 1 Mailing.

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