Autism Reality

The Face of Autism – Loss of funding spells loss of skills


The Daily Gleaner/David Smith ph

I have on previous comments applauded New Brunswick Premier Shawn Graham and the Liberal government for its promise to train 100 TA’s and Resource Teachers a year at the UNB-CEL Autism Intervention Training program. Some TA’s and teachers have already received the training but the commitment made during the election campaign by Mr. Graham is being held up now and, it appears at least, that the commitment is in serious danger of being abandoned or watered down beyond recognition, replaced by in house training by the Department or some other “innovative” alternative. While we remain hopeful that the pledge will be honored we are aware of positioning by the Department of Education officials that would see training of much less quality and integrity than the UNB-CEL program offered by the Department. The attached article from the Daily Gleaner here in Fredericton New Brunswick illustrates the predicament faced by autistic children who have been receiving intervention when the turn five years of age in New Brunswick.



Loss of funding spells loss of skills

By JACQUELINE LEBLANC
leblanc.jacqueline@dailygleaner.com
Published Monday April 23rd, 2007
Appeared on page A1

Tying shoes is a simple task for most eight year olds.

But for Austin O’Donnell, it takes a little more practice.

Austin is autistic, and through intervention therapy, he learns many skills that don’t come easily to him.

Just tying his shoes was broken down into 25 steps to make the task easier for him to remember.

But without continuing the therapy, his mother Jennifer O’Donnell worries Austin may lose some of the skills he worked so hard to acquire.

The government funds an intervention program for preschool-aged autistic children.

Applied behavioral analysis intervention therapy is the most popular and most successful therapy for autistic children. It’s not a cure for autism, but it helps children reach their maximum potential.

But once the child enters kindergarten, the funding stops. But that doesn’t mean the intervention should stop too, said O’Donnell.

That means big money for parents who have to hire the intervention workers themselves.

For the last three years, O’Donnell has organized a benefit dance to try to raise enough money to be able to hire an intervention worker to spend time with Austin every week.

“There are no resources,” she said. “I’m a single parent. I’ve worked two jobs and held the benefit dance for the last three years to split the bill financially. And I’m willing to do that.

“If I don’t fund raise, he simply won’t have it. To me, that’s just not an option. I’m hoping at some point that there’s going to be a change, where (the government) provides some funding.”

Austin was diagnosed with autism when he was four, so he only took advantage of the therapy for eight months before the money stopped.

“I knew the funding would be cut when he entered school,” she said. “I knew that in my mind, but it didn’t really hit me that there was nothing. And, when it happened, I just thought quickly, how can I raise money to continue this?”

The dance usually helps fund about eight to 10 months of intervention therapy.

Most autistic children have a teacher’s assistant in the classroom. But they’re not all trained for autism intervention.

Harold Doherty is with the Autism Society of New Brunswick. His 11-year-old son Conor is autistic.

He said it’s important that the intervention therapy follows the children into the schools.

One way of doing that, he said, is training the teacher’s assistants (TAs) to be qualified to do autism intervention.

“We’re pushing to get the TAs trained,” he said. “If you’re going to have a TA anyway, that you need in most cases, why not train them in some way to be effective to help the children learn?”

There is a course at the University of New Brunswick that trains resource teachers and teacher’s assistants in autism intervention.

Doherty said the Liberal government promised that it would train 100 teacher’s assistants and resource teachers at UNB per year for four years.

This would help autistic children have a chance to have a trained teacher’s assistant.

Yet, Doherty said, there still hasn’t been any move on the promise, and the autism society is worried the government is stepping back, or planning on watering down the promise.

But O’Donnell can’t wait for the teacher’s assistants to be able to take over the intervention work. Austin needs the help now, she said.

“He’s beginning to get to an age where he’s struggling socially,” she said.

“And that’s a big deal because if he’s having troubles at school in that way, then it’s causing a whole other can of worms.

Loss of funding spells loss of skills

“Not wanting to be at school, and being upset all the time, and not really understanding why he doesn’t have friends or why he has such a hard time keeping friends. We’ve been working on that for the last year.”

O’Donnell works with her son on evenings and weekends at home, but she said he needs more intervention time than that.

She said every little bit of therapy can help her son in big ways.

The benefit dance will be held Saturday, April 28, at the Tier II Lounge, above Winners Restaurant on the exhibition grounds at 9 p.m.

Tickets are $20 and can be purchased at Mazzuca’s on York Street.

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April 23, 2007 Posted by | applied behavioral analysis, autism education, autism interventions, Education Minister Kelly Lamrock, election promises, Premier Shawn Graham, resource teachers, teachers aides | 2 Comments

Autism Advocacy – Tony Clement Loses Composure, Lashes Out

The Honorable Tony Clement Canadian Health Minister has lost his composure and lashed out at FEAT-BC because of its plans to hold him accountable for his inaction in addressing Canada’s autism crisis. Mr. Clement expressed his outrage that the FEAT organization would actually organize to bring about his electoral defeat. Mr. Clement accused the FEAT group of being extremists for wanting to amend the Canada Health Act to ensure funding for autism treatment across Canada. Apparently the Liberal and NDP MP’s who voted for that precise measure are also extremists in Mr. Clement’s narrow view. In expressing his outrage Mr. Clement also declared that he is “the hardest-working minister autism advocates have ever had“. How Tony Clement has the audacity to make such a clearly nonsense claims is beyond me. After defeating the motion which would have provided universal coverage for autism treatment in Canada Mr. Clement’s government provided ZERO dollars, $0, for autism in its recent budget. Mr. Clement works very hard at doing what he is told by Stephen Harper but there is no evidence that he has so much as lifted a finger to help the cause of autistic children and adults.

The hardest-working minister autism advocates have ever had? That claim is a stinker if ever there was one Mr. Clement.

http://www.canada.com/vancouversun/news/story.html?id=c1cddc05-246f-4e9c-9455-be53df75eeb3

April 22, 2007 Posted by | autism advocacy, autism awareness, autism disorder, autism treatment, election, FEAT, FEAT BC, Stephen Harper, Tony Clement | Leave a comment

Autism – Parents Can Be Prisoners

Her autism often prompts Kristi Jansen not only to bite her own knees, hands and feet but to pinch and bite her mother Sandy. She would pinch or bite Sandy up and down her arms ‘really hard,’ her mom says, and even while her mother slept.
Glenn Baglo, Vancouver Sun

The following excerpt from Part One of the Vancouver Sun‘s six part series Faces of Autism portrays the realities of life for many parents of autistic children. Sun columnist Peter McMartin, and photographer Glenn Baglo, are painting a graphic picture of the realities of life with autism. For doing so there will be outrage from the joy of autism crowd, as there was following release and showing of the Autism Every Day video, but Mr. McMartin is speaking the truth and painting an accurate picture of autism realities. The biting and other experiences described in this article have also been part of life in our household and in that of many other families with severely autistic family members.


Parents can be prisoners of child’s condition

Pete McMartin, Vancouver Sun
Published: Friday, April 20, 2007

Marriages and friendships come under great strain as the family’s time and energy is gobbled up by the disorder’s demands. Parents of children with autism are not like parents of typical children.

This truth is easily said but not easily understood.

Depending on the severity of their child’s condition, parents are prisoners to that condition just as their child is.

Their other children suffer unintended neglect because the child with autism commands so much of their attention.

Autism also puts its own unique strains on marriages. ….

http://tinyurl.com/yuuwvg

April 21, 2007 Posted by | autism awareness, autism disorder, autism every day, autism reality, family | 2 Comments

Emotional Roller Coaster – Living With Autism





The following excerpts are from the first of a six part Vancouver Sun series Faces of Autism by columnist Peter McMartin and photographer Glenn Baglo. The author is correct to point out the uniqueness of each person with autism. It is also true though, that life with an autism family member and loved one, is an emotional roller coaster with considerable stress. Parents of severely autistic children will be able to relate to much of what is portrayed in this article.

http://www.canada.com/vancouversun/features/autism/index.html

Autistic 14-year-old Kristi Jansen swings from crying to laughing to screaming in a matter of seconds. 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. Kristi isn’t a typical autistic child — in fact, there is no such thing, as Pete McMartin and photographer Glenn Baglo discover. What families struggling with the disorder do have in common, however, is intense physical, emotional and financial stress.

http://tinyurl.com/2yctck

t is 3:30 p.m. on a Tuesday and Kristi Jansen, 14, of Langley, is just home from high school. She is tall and blond, with the long-limbed athletic build of a middle-distance runner. She is wearing a short jacket, leggings and a camouflage print skirt — an outfit of combat chic that gives her an artful, edgy look, as if she were the kind of young woman who would gravitate toward the high school drama club. Her mother, Sandy, gives Kristi a Popsicle. Kristi settles on the den couch to watch television and Sandy turns on cartoons for her. Her mother and I go into the living room at the front of the house to talk.

And then, without warning, Kristi is screaming.

That is not quite right. Kristi is screaming and laughing and crying, one outburst after the other. They come within seconds of each other, intermingled, without pause, as if she were channel-surfing her emotions. …… …..

April 21, 2007 Posted by | autism awareness, autism disorder, emotional, laughing, screaming, vancouver sun | Leave a comment

Vancouver Sun – The Many Faces of Autism

One fundamental point which is repeatedly ignored in discussions, debates and arguments over autism is that “autism” as discussed in the media is a spectrum of disorders which includes autism disorder and other related disorders eg. PDD-NOS, Aspergers. There are many faces of autism, many different characteristics. The Vancouver Sun has published a balanced and understandable overview of autism disorders and promises to present a series of stories portraying different aspects of the spectrum of autism realities.

http://tinyurl.com/2jxw2l

To understand the many faces of autism, first consider what it is not

Pete McMartin, Vancouver Sun

Published: Saturday, April 21, 2007

……..

Simply put, there is no one profile that fits those diagnosed with autism. So, to define what autism is, it might be best by pointing out what it is not.

IT IS NOT A MENTAL ILLNESS OR A DISEASE.

It is a neurological and, ultimately, a biological disorder that affects the normal development of the brain in areas of social interaction, communication and sometimes cognitive skills. Usually, that disorder manifests itself before the child reaches three. (More on those symptoms and their diagnosis in a later instalment.)

THE CAUSES OF AUTISM ARE STILL UNKNOWN.

…..

AUTISM IS NOT A SINGULARITY.

It is a spectrum of disorders. On that spectrum are five related disorders, the three most common of these being classic autistic disorder (AD), pervasive developmental disorder not otherwise specified (PDD-NOS) and Asperger’s syndrome. They share some behaviours but not others. Those with AD, for example, are often withdrawn and can be completely non-verbal, while those diagnosed with Asperger’s syndrome can have normal verbal and academic skills but have extreme difficulty interacting socially with others.

THERE IS NO MENTAL STANDARD OR MEDIAN FOR THOSE ON THE AUTISM SPECTRUM.

Some have below-average intelligence, some are average and some are above average.

Additionally, mental abilities can be uneven. A person on the autism spectrum might be able to do complex math but be unable to tie his or her own shoes.

Some are capable of holding jobs and of living independently or semi-independently; some have the intellectual capacity to work but not the social skills to make their way in the work environment; some must receive 24-hour care their entire lives.

AUTISM IS NOT CURABLE.

It is a life-long condition. As one parent of a 12-year-old girl diagnosed with severe autism said:

“Parents have to understand:

“This isn’t a sprint. It’s a marathon.”

The initial symptoms, however, can be ameliorated through a combination of intensive early childhood therapy and, it has to be said, the fierce and protective love of parents and family.

See http://www.VancouverSun.com for more from the six-day special feature

TODAY:

The story of a severe case, and life at home with an autistic child.

MONDAY:

Two mothers, their tears, and the sacrifices they must make living with autism.

TUESDAY:

How the health care system discriminates against those on low income.

WEDNESDAY:

Immigrants and the special challenges they face in dealing with autism.

THURSDAY:

The high cost of therapy, and a mother’s determination.

FRIDAY:

Two autistic teens and their families face an uncertain future.”

April 21, 2007 Posted by | Aspergers' Syndrome, autism awareness, autism disorder, autism interventions, behavioral intervention, PDD-NOS, the rain man, vancouver sun | Leave a comment

Autism Advocacy in Impending Federal Election


FEAT-BC, which has been at the forefront of autism advocacy in Canada, has heard the message from the Supreme Court of Canada. With two SCC decisions in Auton and Deskin-Wynberg denying the courts as effective avenues for seeking equality protection for autistic children in hand the time is now for political action and FEAT-BC is prepared to jump into the fray – again. The strategy recognizes the need for an effective concentration of effort and resources by targeting ridings of vulnerable politicians who have acted against the cause of autism in Canada. As the attached article from MacLean’s illustrates, FEAT-BC is very interested in one Tony Clement, the federal Health Minister who has fought against Federal government help for autistic persons in Canada , and who did not win by much in his last election.

Watch Out Tony! What goes around comes around!

Warning to low-hanging politicians

Parents of autistic kids take aim at Tony Clement

JOHN GEDDES | April 23, 2007 |

Imagine a Tory who won a seat in the last election by only a few votes. Who would such an MP least want to have to fight, alongside the usual opposition rivals, to survive in the coming campaign? How about enraged, well-organized parents who accuse Ottawa of failing to assure their children of essential medical care?

They might not know it yet, but this unsettling scenario faces certain carefully targeted Conservatives. Parents of autistic children plan to take aim at selected government MPs who squeaked in last time by two per cent of the vote or less. And the most vulnerable MP of all could be the architect of the federal autism policy that has the parents so upset — Health Minister Tony Clement, who won his Ontario riding of Parry Sound-Muskoka last time by a mere 29 votes.

Autism groups are cagey about revealing details of their plan of attack before an election is on. But one Ontario activist told Maclean’s, “Clement is like a pear ready to drop from the tree.” B.C.’s Families for Early Autism Treatment was active in a few closely fought B.C. ridings in 2006. Some of the group’s core members, including director Jean Lewis, are scheduled to attend a meeting in Halifax on May 26 to pass along tactical lessons to East Coast parents of autistic children.

But if Stephen Harper’s minority falls before then, the B.C. firebrands plan to cancel their Halifax event and make a campaign detour to Ontario of up to two weeks. “We will certainly be in Parry Sound-Muskoka,” Lewis said. The B.C. group and their allies demand federal action to extend medicare coverage to full early autism treatment, which can cost $35,000 a year for young children.

Successive federal Liberal and Tory governments have held that deciding what conditions are insured is up to the provinces. Lewis says autism activists will back individual candidates who support their position, but not parties. “When the Liberals were in power,” she said, “they were as pathetic as the Conservatives are now.”

http://tinyurl.com/2d9965

April 20, 2007 Posted by | autism advocacy, autism disorder, autism health, autism treatment, Canada Health Act, FEAT BC, Jean Lewis, Stephen Harper, Tony Clement | Leave a comment

Federal Government Pays for Harper’s Personal Primper but Provides Nothing for Autism

In the budget of Prime Minister Harper’s federal government there were no monies set aside this year for autism. 1 in 150 Canadians ( approximately 1 in 98 male Canadians) have an autism disorder, a serious neurological disorder which has resulted in Canadians moving to the wealthiest Canadian province of Alberta in order to seek government funded treatment for their autistic children. Although Prime Minister Stephen Harper’s government has dedicated nothing to helping autistic children and adults in Canada, not one single penny, it does find money to spend on Mr Harper’s fashion “primper”:


Apr 18, 2007 07:50 PM
Jennifer Ditchburn
Canadian press

OTTAWA – It turns out that taxpayers are picking up the tab for Prime Minister Stephen Harper’s personal primper.

After two days of ducking media and opposition questions, the Conservatives finally revealed Wednesday that Michelle Muntean is on Harper’s government staff.

But the revelation raises two more big questions: How much is she being paid? And why is there no government record of her employment.

Harper has been travelling with his personal image adviser for major domestic and international events – most recently at ceremonies at Vimy Ridge in France last week. Muntean helps him perfect his look, including managing his wardrobe and general grooming.

News that Harper uses a style maven had the opposition both frothing and laughing.

“Does the prime minister have difficulty sleeping at night wondering whether he should wear the light blue socks or the dark blue ones?” New Democrat MP Judy Wasylycia-Leis asked in the House of Commons, to loud hoots and claps.

“Can the prime minister tell us who pays for his fashion adviser, and how much that costs?”

Liberal MP Garth Turner also took a shot at his former boss: “It’s a legitimate question. I think it’s an embarrassing one to him because he likes the cowboy image and not all cowboys wear powder.”

Government House Leader Peter Van Loan wouldn’t say who pays for Muntean’s services.

“Mr. Speaker, the prime minister maintains a tour staff, as do all prime ministers,” Van Loan told the Commons.

But a government source later confirmed that taxpayers are on the hook for Muntean’s services – although the Conservative party pays her expenses.

http://www.thestar.com/News/article/204710

April 19, 2007 Posted by | autism disorder, fashion, federal budget, Garth Turner, Judy Wasylycia-Leis, Michelle Muntean, Prime Minister Harper | 2 Comments

New Jersey Takes Action on Autism



The Canadian government has taken no specific action on autism. It did not dedicate a single penny toward the cause of autism, autistic persons or families with autistic loved ones. It does not display any sense of urgency, even little awareness of the autism issues confronting so many Canadians. Some provincial governments have made strides, with resistant bureaucracies moving when pushed by parent advocacy. But there is very little action anywhere in Canada to address the serious needs of autistic adults. Police forces and other first responders have little or no training in autism and how to deal with autistic persons.

In the United States governments at both the federal and state levels appear to understand the seriousness and scope of the autism health and life crisis and are taking action as this commentary by New Jersey Assembly Speaker Joseph J. Roberts Jr. in the Asbury Park Press illustrates:

Legislation aims to better detect and treat autism
Posted by the Asbury Park Press on 04/18/07

BY JOSEPH J. ROBERTS JR.

The diagnosis can be the most devastating, overwhelming and confounding words a parent might ever hear: “Your child has autism.”

In an instant, all of a parent’s joyous dreams are brutally crushed; the child’s prospects for a normal life are virtually extinguished.

The child is in a neurologically compromised world, exhibiting poor eye contact, diminished communication skills and peculiar repetitive behaviors. The body is there, but the inner soul has vanished because the child’s mind has gone haywire.

The emotional toll for the parents and other family members is incalculable. There are new challenges in providing care. There are financial strains from paying for costly therapies often not covered by insurance. There is enormous stress and a gnawing pain that comes from the fact that nobody knows why autism occurs and — for the moment, at least — nobody knows of a cure.

These private sorrows are the harsh reality of autism, a baffling, mysterious developmental disorder that appears to be on the rise in New Jersey and elsewhere.

A new study by the federal Centers for Disease Control and Prevention recently determined that one out of every 94 New Jersey children has some form of autism. Nationally, the CDC study determined one out of every 150 children is affected by autism spectrum disorder, with a new child being diagnosed every 20 minutes.

These rates are radically different from the nation’s statistical figures from 10 years ago, when it was felt that one out of 500 children had autism.

Nobody is sure whether autism rates are rising. It could be that medical providers, parents and educators are doing a better job of identifying and classifying cases. But the numbers also could be rising because of something in the environment or in human genetics.

Whatever the reasons, autism has become a significant challenge for everyone. It is now the country’s fastest growing developmental disability, more prevalent than childhood cancer, juvenile diabetes and pediatric AIDS combined.

It’s a problem that commands greater public awareness and greater attention by all sectors of society — in government, education, medicine, social services, scientific research and our public safety networks.

Recognizing this situation, the Assembly recently passed a seven-bill package aimed at improving the detection, treatment and public awareness of autism in New Jersey. These measures will help address some of the challenges being presented by increases in the number of children being diagnosed with autism and a corresponding surge of autistic young adults who are now aging out of the state’s special-education system.

The seven measures would improve the state’s autism safety net along the following lines:

Set a goal for detecting autism within the first three years of a child’s life and provide training for pediatricians to better identify kids with autism. The earlier autism is detected, the better a child’s chances of living a more productive adult life.

Create a new, separate task force on adults with autism so the state can better attend to their housing, job training and long-term care needs.

Provide special training of police officers, firefighters and emergency medical technicians to recognize and help autistic individuals.

Establish a centralized statewide autism registry to keep better track of diagnosis rates and help in identifying ways to provide assistance to families that have autistic loved ones.

Restructure the Governor’s Council for Medical Research and Treatment of Autism to provide more diverse representation and views from the state’s autism community.

Extend the funding mechanism the state created four years ago to finance grants for autism research and treatment programs. This will ensure uninterrupted assistance to help the state address autism past 2008.

Require the state education department to develop recommendations for raising autism awareness among current and prospective teachers and require teacher certification programs to include training on handling autistic children.

Complementing this package, Gov. Corzine recently proposed a significant increase — $5 million — in state support for autism-related programs and initiatives. And the Assembly has advanced another measure urging the state Department of Health and Senior Services to study whether ultrasounds may be a contributing factor to the state’s rising autism rates.

While our state has long been on the cutting edge of diagnosing and treating autism, the families touched by autism command our compassion and a re-energized commitment to ease the long days until science unlocks the mysteries of this disorder and produces a cure.

Joseph J. Roberts Jr., D-Camden, is Assembly speaker.

http://www.app.com/apps/pbcs.dll/article?AID=/20070418/OPINION/704180376/1030

April 18, 2007 Posted by | autism disorder, Joseph J. Roberts, new jersey | Leave a comment

Conor and the Computer


Autism or no autism Conor is pretty handy with some of our entertainment technology. He is better than his dad at manipulating the DVD/VCR equipment and he loves to play on the computer. He will sit (usually quietly) for as much as an hour at a time playing on the PBS Kids site. In the photo above bottom you can see on the toolbar folder bookmarks for May & Mieguel, Big Birds, Dragon Tales and just the tail end of the Friends book mark. All these bookmarks were made by Conor without our involvement or instruction. He may well have been taught how to bookmark at school but it is still a boost for us to see him able to use this technology for his amusement.

April 17, 2007 Posted by | autism disorder, autism entertainment, computer, Conor, PBS Kids | 1 Comment

Will Liberals Broken Autism Promise Come Back to Haunt Them?



The Supreme Court of Canada has handed the autism football back to Ontario Premier and Liberal leader Dalton McGuinty turning down the Deskin Wynberg appeal without reasons but now handing parents of autistic children two SCC defeats and making it clear that Canadian courts will not provide effective Charter equality rights to their children. There are many assumptions built into such reasoning but it is hard to reconcile any real notion of equality rights with a deference that allows political decision makers to do as they wish with respect to some of the most vulnerable members of society. In any event now, in Ontario, it is back to Dalton McGuinty.

Will Mr. McGuinty be haunted by his broken election pledge to provide treatment to autistic children past the age of 6? The Standard suggests that it is one more example of failed leadership on the part of the Ontario Premier:

“During the 2003 provincial election, families with autistic children were acutely aware of the government’s policy and for them it was a hot button issue in the weeks leading up to the vote.

In a nutshell, they were incensed with the Ernie Eves Progressive Conservatives and a government practice that cut off funding for IBI therapy when a child turned six.

As the argument went, it was discriminatory, a violation of these children’s rights under the Charter of Rights and Freedoms.

As it was, the issue was very political. The Tories had to defend their record. The NDP and the Liberals lined up to attack it.

On the campaign trail, Liberal Leader Dalton McGuinty was dropping promises across the province, endearing himself and his party to Ontario voters.

One of those promises was to extend government support of IBI therapy for autistic children past the age of six.

This is what the parents of autistic children wanted to hear.

They started to put their support behind McGuinty. They talked to their families, neighbours and friends and encouraged votes for the Liberal party.

The Liberals won the election, and then reneged on the promise.

Not only did McGuinty fail to meet the pledge, his government has spent an untold amount of taxpayer money (the government has refused freedom of information requests for the amount) defending its autism policy against the lawsuit from angered parents feeling, quite rightly, betrayed.

Put this one in the file with the Liberals’ 2003 campaign promise not to raise taxes. It should also put to rest any questions about why recent polls have McGuinty trailing PC Leader John Tory by 10 points when questions about leadership are asked.”

http://tinyurl.com/2zb9hj

Of course the Liberals have promised to require schools to provide ABA trained assistance by next school year a promise which would appear to be impossible to keep. And Lawyer Mary Eberts who represented the families in the unsuccessful Deskin Wyneberg case said that the people providing the ABA will not be trained:

“It needs to be in schools,” Eberts said, dismissing the province’s ABA plan as “a wishy-washy approach that’s offered by people with no training.”

http://www.cbc.ca/canada/ottawa/story/2007/04/12/autism-scoc.html

Can a leader who backs out of a promise to do the right thing by autistic children be trusted to lead a province? If he will betray the weak and vulnerable who can trust him?

April 16, 2007 Posted by | autism disorder, Dalton McGuinty, election promises | Leave a comment