Friday, December 28, 2007

Autism News Articles Dec 22nd - December 28th 2007

Autism News Articles
December 22nd 2007- December 28th 2007
4 days till New Years Day!
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From a Listmate,8599,1698128-1,00.html

Monday, Dec. 24, 2007
Autistic Kids: The Sibling Problem
By Amy Lennard Goehner
A few months ago, I took my sons to buy shoes. Nate is 14 and autistic. Joey is 8 and "typical." And I'm the parent — most of the time. Before we got to the store, Joey said to me, "If Nate has a tantrum, I can handle him. You just focus on buying shoes. I'm better at handling tantrums than you. Sometimes you just yell and it makes things worse. No offense."
None taken. He's absolutely right.
The "typically developing" siblings of autistic children are, in fact, the furthest thing from typical. Often, they are wiser and more mature than their age would suggest. And they have to be, given the myriad challenges they face: parental responsibility; a feeling of isolation from the rest of their family; confusion, fear, anger and embarrassment about their autistic sibling. And on top of all of it, guilt for having these feelings.
As their parents, there's a lot we can do to help. For starters, we can educate them early on, by explaining their sibling's disorder — a conversation that should be ongoing. Dr. Raun Melmed, co-founder and medical director of the Southwest Autism Research and Resource Center in Phoenix, suggests including non-autistic children in visits to the doctor or other autism professionals. Early intervention doesn't have to be "thought of as being geared only to the involved child," Melmed says. In his office, Melmed reassures siblings that "other brothers and sisters have negative and confusing thoughts about their [autistic] siblings. That is common." He also instructs parents to reaffirm that message at home. "Parents need only acknowledge to their healthy children that they know what they are going through and that negative feelings are normal," he says.
A great way for kids to feel "normal" is to meet other siblings of autistic children, which they can do at sibling workshops. At the Kennedy Krieger Institute for children with developmental disabilities in Baltimore, social worker Mary Snyder-Vogel runs a program called Sibshops. "The workshops give these kids the opportunity to realize they're not alone," Snyder-Vogel says. "[We play] a lot of games that help them interact and problem-solve with peers. Kids don't even realize they're getting support."
At a recent Sibfun workshop at the Jewish Community Center on Manhattan's Upper West Side, therapists used puppet shows to illustrate issues that are common among siblings of special-needs kids. When asked what they thought the puppets were feeling, the children in the audience needed no prompting, immediately shouting out words like sad, disappointed and jealous.
Siblings will commonly have negative feelings — some might never connect or want to connect with their autistic siblings — but the good news is that typical siblings often turn out to be more compassionate and caring than average. "These siblings have seen what it's like to have a hard time in life," says Sandra Harris, executive director of Rutgers University's Douglass Developmental Disabilities Center, a program for people with autism spectrum disorders and their families, and author of Siblings of Children with Autism: A Guide for Families (Woodbine House).
There are many other, more specific challenges that affect siblings of special-needs kids — and many of them apply to sibling relationships of every kind. Here are some of the issues that most frequently confront typical siblings — and their families — with advice from professionals.
Challenge #1: "Why won't he play with me?"
For younger siblings of autistic children, one of their first doses of reality usually comes when their older brother or sister won't play. "The child on the [autism] spectrum may seem indifferent or have a meltdown when the sibling tries to interact," says Rutgers' Harris.
Seven-year-old Adam, whose autistic brother Jacob is 11, says, "I can't really play games with Jacob like I can with my cousin Eric [also 11]. Jacob likes to play games on the computer — but by himself, not with me. He gets too angry if he loses and then doesn't want to play." Adam's father, Paul, says soberly, "I'm sure Eric represents the brother Adam might have had."
Solution: Find common ground
Parents can start by telling the typical sibling that his brother or sister "is doing the best he can, and here are some things you can do with him," says Judy Levy, director of social work at the Kennedy Krieger Institute. "Maybe in the future he'll be able to learn to play with you in other ways, but right now this is what he can do."
Harris encourages parents to "find ways in which the siblings can relate [or] share an interest." That can be something very simple, as Elliot learned at an early age. "It turns out my brothers [Benjamin and Aaron] are really ticklish," says Elliot. "Tickling was a good way to bond with them, and for them to show affection back by laughing and wanting it again." (And again and again — and again.)
Challenge #2: "It's not fair!"
Every parent has heard his or her child say, "It's not fair!" But for families with autistic and typical siblings, "not fair" is the reality, when it comes to one child being treated differently from the other. Martin Bounds has one autistic child, Charlie, 13, and one typical child, Alex, 15, about whom Bounds says, "He'd get very upset when he would bump his knee or complain of feeling sick. He thought we weren't sufficiently concerned about him, in the spirit of 'I could be over here dying, and all you care about is Charlie.'"
That may be overstatement, but such sentiments often stem from legitimate gripes. Bounds recalls when he and his wife attended an important fund-raiser for Charlie three years ago, on the same day Alex rode in an annual bike race. "Alex won the race for his age group and was really upset when we were not there to greet him at the finish line," says Bounds. "As much as you try to balance schedules, as parents of an autistic child, you have to basically accept that you are going to have moments when you feel you have cheated your other children, and those moments are awful."
Solution: Create special time
Harris urges parents to set aside alone-time with their typical kids every week. "Private time can even [include] riding in the car to pick up the laundry," she says, "but since [the child is] with Daddy, [he or she is] the focus of his attention."
Some kids, like Elliot, develop new hobbies as a way to spend time with a parent. "Gardening was something I could do with just my mom — it was never easy to get my mom to myself," he says. Elliot began gardening five years ago; he's now a junior judge at flower shows and grows about 330 varieties at home, including the 170 seedlings he has hybridized.
For single parents, however, eking out one-on-one time can be a daunting task. As a widowed mom, I know firsthand — we do the best we can with the time we have. Single dad Ron Barth says his autistic 9-year-old, Daniel, "dominates everything, so I have to make special moments with Nicole [age 15], like taking her shopping — without Daniel." But, says Barth, "There aren't enough of those moments."
Challenge #3: "I'm scared!"
Some autistic children are aggressive, which can be scary and dangerous, especially for younger kids. And parents can't possibly keep an eye on their kids every second — which is about the amount of time it took for one child I interviewed to get squirted in the eyes with Windex by her younger autistic brother. (She survived just fine.) Even my son Nate, who isn't aggressive but is twice the size of Joey, often hugs Joey — tight. Very tight. Around the neck. When Joey yells "MOM!" I've learned to tell the difference between Mom, can you help me find my Gameboy? and MOM, he's choking me!
Solution: Find a safe haven
"I tell parents to have a 'safe place,' usually the child's room, where the typical child can go while an adult handles the behavior problem," says Harris. "Then, as soon as they can, the parents should comfort the typical child and help him or her understand what happened."
Harris also suggests that parents develop an "intervention plan" to teach the child with autism alternate behaviors — such as asking to be left alone, or using words, cards or a special gesture — when he or she feels upset. "Kids with autism can learn to go their room, sit in a beanbag chair, or do something else that helps them calm themselves," says Harris.
Challenge #4: "He's so embarrassing!"
It's common for siblings to feel embarrassed by their autistic brother or sister's behavior in public, or to be reluctant to bring their friends home. Kelly Reynolds, 21, says it can be difficult introducing her autistic brother, Will, to her friends: "It's hard to have a young child in an older kid's body. [Will] may go up to one of my girlfriends and sit on her on the couch — which probably would have been cute when he was five years old but he's 17 now," Reynolds says. "That can be hard because you can tell when someone feels awkward or scared or thrown off."
Solution: Encourage honesty — and laugh
"Interestingly, a lot of these [typical sibs] are more outspoken," says Levy of the Kennedy Krieger Institute. "They'll go up to people and say, 'Yes, that's my brother. He has special needs. Do you have any questions?'"
My son Joey is one of those kids. When he was 6, we were at a bus stop when Nate started jumping up and down and making weird noises — just being Nate. When Joey's friend started making fun of Nate, Joey got right in her face and said, "Do NOT make fun of my brother again! Everybody learns differently." They were my words coming from Joey's mouth.
Several parents I interviewed said a sense of humor is key. "Your typical child can see the humor in the actions of his autistic siblings," says Bounds, father to Charlie and Alex. "It's okay to talk about his or her 'weird brother' in a way that signals that you both know this isn't normal."
When Nate does something bizarre in public, which is just about whenever he's in public, Joey and I often give each other an Oh, my God! look and roll our eyes, which sort of says, "We're in this together."
Challenge #5: "I feel like the parent."
Angela Bryan-Brown, 15, says she often feels like a parent to her 14-year-old brother Alasdair. "You don't have a choice," says Angie. "You've got to help out, and your parents can only do so much. They're so stressed out." Angie's mom Florie Seery refers to Angie as "the third parent in the house" and "an old soul," a phrase I've heard often from other parents.
Elliot says of his siblings' disorder: "Even though I'm four years younger, it places me in the position of being the older brother. "
Solution: Let sibs be children too
"It's a challenge for children to feel that sense of responsibility for their sibling," says Harris. "A wise parent works hard to temper that and to make the responsibilities fitting to the age of the siblings. An older sister can keep her brother entertained for half an hour because an older sister would typically do that to help out — but she's not a parent."
For young siblings, Harris suggests counseling them: "'It's wonderful to care about your brother, but you're my little boy too. Because your brother has trouble learning sometimes, he might need help from you, but you're not his mommy or daddy. We will take care of him when he needs help.' That kind of message reaffirms one's love and lifts that burden."
Challenge #6: The holidays
"Attending loud, busy social gatherings with new sights, sounds, smells, intrusive relatives and strange places overwhelms the best of us, let alone those with sensitive sensory systems," says Dr. Raun Melmed of the Southwest Autism Research and Resource Center. "Of course, when the child gets overwhelmed and melts down, so do the siblings and parents."
"In short, holidays suck, especially the ones you spend outside your own home," says dad, Bounds. "They're full of the most dreaded thing in an autistic life — unstructured time. People get together with relatives and friends and talk — which is sort of hard to do when your child has your sister-in-law's cat by the throat and is about to put him in the food processor."
Solution: Ask family members to help
Harris suggests that parents "create a rotating team of adults. Each person spends a half-hour with the child, so that parents and siblings aren't trapped, and the child doesn't have to be exposed to the chaos of the party. Cousins and aunts can take a turn."
Siblings, however, should be spared. "The typically developing kid wants the holiday to come. She's off from school, she's getting her present and she can't really enjoy that" if she's expected to take care of her autistic brother or sister, says social worker Snyder-Vogel.
Challenge #7: In adulthood, the sibs will become "parents"
Someday, inevitably, the sibling of an autistic child will most likely take on the role of guardian and advocate. "You're basically at some point going to be their parent," says Kelly Reynolds, 21. "Anyone I want to marry has to take that into account. In some ways you kind of feel like you already have a kid. ... For me, it's kind of a deal-breaker when someone can't really get along with my brother. He's such a big part of my life."
Solution: Discuss future plans with adult children
Parents should talk about financial plans and any care arrangements that have been made, once typical siblings are old enough, says Harris in a recent article for the Autism Society of America. But this isn't a discussion to initiate with younger children — unless they bring the topic up on their own.
Many of the children I interviewed showed deep concern for their autistic brothers and sisters. And nearly all of the professionals and doctors I talked with said that a disproportionate number of their students and residents were siblings of people with autism. "I'm very interested in trying to help find a cure," says 15-year-old Elliot, who closely follows news about the disorder. "I'd just like to get a neat little pill someday for my siblings that they can pop in with their apple juice and hopefully be normal."

From a listmate

Shurman blasts McGuinty government for
neglecting special-needs children
TORONTO – One of the PC survivors of the
recent Ontario election, Thornhill MPP Peter
Shurman, is new to the political scene. Yet
he’s already attracting attention at Queen’s
Park by trumpeting the cause of specialneeds
In his first speech as Thornhill’s MPP at
the Ontario Legislature on Dec. 6, Shurman
addressed the dire need for increased funding
for Zareinu Educational Centre of Metropolitan
Toronto, which provides special education
and individualized therapies to children
with physical and developmental challenges.
Zareinu is located in the basement of
the Sephardic Kehila Centre in Thornhill.
Shurman, a former radio talk-show host,
isn’t a novice at speaking his mind and tackling
controversial issues. The following are
excerpts of his address:
• “In 1999, a Conservative government
allocated $14.5 million annually to specialneeds
children in private schools much like
this one; ‘special-needs dollars,’ they call
it…this is medical. But this government
does not interpret the regulations with any
technical latitude…. So Zareinu and other
organizations like it are sitting out there and
suffering silently, and the kids and their families
are being shortchanged. Only $4.5 million
annually is being spent. If you do the
math on that, and you take it from 1999,
since nobody has changed the line item,
these kids are being shortchanged, and
many like them around Ontario , to the tune
of about $10 million a year; eight years, $80
million. Maybe it went into non-bank, assetbased
commercial paper; I don’t know. But
the bottom line is, that money isn’t there or
at least it hasn’t been there. The government
has to understand that people are not numbers;
they are faces. They’re faces, and I’ve
seen the faces.”
• “Our bureaucrats saved us $80 million.
Wow, $80 million. Can you imagine what
that could have done for Zareinu, for these
kids and these families and for countless
other facilities like this all over the
• “I’ve got to say that it broke my heart,
despite the very great progress that they
make in doing what they do, because they
operate in circumstances that none of us
would wish to see in our own individual
lives, much less on behalf of children who
are incapable by any stretch of the imagination
of speaking for themselves and who
come from families that have a big problem
making happen what has to happen for a
normal child, much less a child with developmental
• “The funds basically are derived on a
public basis from fundraising to the tune of
a couple of million dollars, a very small
grant of about half a million that comes from
the local CCAC to meet the needs of a gargantuan
budget, and the rest, of course,
comes from parents who either can, or in many cases,
cannot afford it. But the cost is gargantuan”.

Jewish Tribune
Dec 20, 2007
News Section

From a Listmate
The Toronto Sun

Hard to diagnose, but behavioural signals include:
Stressed or depressed behaviour.
Behaviour indicating anxiety, such as pacing, clicking pens.
Unusual repetitive movements such as hand flapping, finger twisting, tics.
Unusual or no response to emotional situations.
Being described as hyperactive, inattentive or unfocused.
Highly developed verbal skills, poor writing skills.
Difficulty handling unstructured times such as recess or gym class.
Inability to make friends.
Statistics are vague and varying, but Aspergers occurs in roughly one in 1,000 people.
Only one in eight Asperger children are girls but they often are very sensitive to any touch, including something as slight as that of a clothing tag. Some will eat only a certain food.
Celebrities who have been reported to have Aspergers include director Steven Spielberg, actor Dan Aykroyd, scientist Albert Einstein and pianist Glenn Gould.
The name comes from a Viennese psychiatrist, Hans Asperger, who noted the cluster of characteristics in the 1940s. A British doctor brought his work to contemporary attention in the 80s.

One mom's struggle leads to group offering practical expertise on baffling syndrome
Dec 27, 2007 04:30 AM
Catherine Dunphy
A 10-year-old girl refuses to wear anything but her bathing suit. In winter. To school. To the distress of her parents.
A 12-year-old boy is obsessed with Toronto's transit system, memorizing the location and number of every city bus and subway route.
Normal-looking and normal-behaving in many ways, these are GTA children with Asperger Syndrome, commonly thought of as a form of high-functioning autism. But it's rare and frequently misdiagnosed as an attention deficit or anxiety disorder, or even giftedness.
In fact, Aspergers children are often overwhelmingly bright, but they can't process more than one thing at a time. Super sensitive to outside stimuli, they easily overload. One describes being in a classroom like being in a closet with 2,000 people talking at once.
As a result, they often have highly focused, if unusual, interests. They may know the latitude and longitude of every world capital city, but they can't read non-verbal communication and therefore are duds at social interaction. Worst of all, they are smart enough to know it.
"I'm so bad, I should be dead," Matthew Leaton told his mother, Nancy, when he was just 7. He'd fly into rages – punch and kick – but not be able to tell his parents why. But he is also a sweet, affectionate boy who loves reading maps.
Then, last summer, at age 11, he was diagnosed with Asperger Syndrome.
"He's happier because he knows it's not his fault now, that parts of his brain don't connect. They're all there; they just don't connect. Now we just have to learn the skills to get along with this," says his mother Nancy, a retired teacher.
She is finding them – and moral support – in the new Eglinton Ave. offices of the Aspergers Society of Ontario.
For eight years, Margot Nelles ran the society single-handedly out of the pantry nook off the kitchen of her small home in Toronto's Wychwood Park area.
There Nelles organized two ground-breaking conferences and helped publish a respected Canadian text on a syndrome that has really only been on the health radar for less than two decades.
As a mother of two boys with it, she has become the foremost expert and resource for other parents.
"Aspergers needn't be a bad thing but parents are usually devastated when they hear the diagnosis and often don't want to tell the child," says Nelles, 44.
"If they don't tell, depression will happen. They are smart kids. They can see they are not connecting. The depression derails them. It's inevitable. Whether they are 16, 18, 23, it will happen."
Asperger Syndrome was first included in the DSM-IV, the diagnostic bible of the psychiatric community, only in 1994.
"It really is new," says Kevin Stoddard, a social worker with a practice specializing in Aspergers. "We are really struggling with how to identify these kids and adults and to differentiate high-functioning autism from Aspergers. It's still not clear."
Eight years ago when Nelles was trying to get help for her eldest son, Zack, now 16, things were positively murky.
"I had been looking for help since he was 2 1/2," she recalls. She had been told repeatedly she was a bad parent, a hysteric; she was told her child – who would twirl on the floor for hours – was just going through a phase.
"She was a mess and he was such a sad little guy," recalls Carole Nelles, Margot's mother.
Dr. Leon Sloman at the Centre for Addiction and Mental Health diagnosed Zack with Asperger Syndrome.
When Nelles told her son that things would get easier now that they understood the nature of the problem, the boy replied: "I always thought I was a broken, rotten kid." Those words propelled her into action.Two weeks later, Nelles, at one time an associate television producer, was back in Sloman's office with a plan for a registered charitable organization and a board of directors. She had spent her savings to start a website for the new organization. Almost immediately the emails and phone calls started.
"There was a complete vacuum in terms of facilities for these children," Sloman says.
Nelles suggested group meetings so the children could interact socially. That was the start of a flourishing program that takes place at the Centre for Addiction and Mental Health every Wednesday afternoon. While the children are meeting, so are their parents.
Nelles talks for at least two hours to every family who phones or writes her. "Why should other people take all those years (I took) to get on the right road?" she says.
Nelles and her mother, who helps co-ordinate the parents' groups, scramble to pay the facilitators and the experts they bring in.
They've never received government money but many of their 200 members do their own fundraising. Two years ago they received a windfall private donation of $50,000.
Nelles' work is paying off for GTA kids with Aspergers.
The girl in the bathing suit is now wearing regular clothing. She has a small gang of friends at school and plans to be a counsellor-in-training at a camp this summer.
Matthew Leaton is starting a new school next month. It is for children with Autism Spectrum Disorders. Next year, fingers crossed, he will be enrolled in a special class for Asperger kids taught by a teacher with Asperger Syndrome.
"Because he is bright they are telling us there is no reason he couldn't go to university," says Nancy Leaton.
"There is hope," Nelles says. "Aspergers is not a dead-end sentence."


From a listmate

From sea to sea to sea, a model for the world
Deborah Coyne
What does it mean to be Canadian when we come from everywhere?
How do we forge a shared national purpose among people who have never shared anything before?
The world is coming to Canada. More and more Canadians are global citizens, exploring the world or staying connected to our countries of origin more instantly, more easily and more inexpensively than ever before.
We are Canadians without borders, looking outward to an exciting future. We have come together from every corner of the globe to continue to build a progressive, vigorous, multi-ethnic democracy that is unique in human history. We want to embrace the national responsibilities that have been thrust upon us because of our unique place in the international community.
Our destiny is to show that Canada can be a model for a troubled world increasingly challenged by religious and sectarian friction, and environmental catastrophes. Our growing diversity as a people, our huge pool of human talent, is our greatest strength from which to forge a clear, national purpose.
We need bold and visionary national leadership to inspire us to confidently take on the world and convey a sense of forward motion.
We need national leadership that inspires Canadians once again to believe that those in public life can translate rhetoric into action. We need a national government that governs for the Canadian people, not the provincial premiers, and that brings forward initiatives with clarity and conviction.
Here are some examples of what such leadership could achieve:
We need a vigorous national commitment to establish the best public education system in the world. Among other things, this should mean:
Child care, including early childhood education, available in the schools (elsewhere as necessary) from the age of 3.
Enhanced parental leave to permit one parent to stay home with children for at least the early years of a child's life.
No public funding for faith-based schools and a curriculum that includes serious study of religions of the world.
Funding to ensure that there is a teacher's assistant in every classroom.
Schools open in the evening and serving as community hubs.
Assured access to the full range of post-secondary education to all qualified students.
We must once and for all devote the attention and resources necessary to put an end to Third-World conditions among aboriginal Canadians.
We must likewise take all necessary steps to achieve equality of opportunity for all Canadians in practice, not just in theory. We must solve the foreign credentials problem that has deeply hurt so many new Canadians, and provide adequate infrastructure to help new Canadians maximize their potential through language training, settlement services and internship programs that provide work experience.
We must also establish wage security to enhance the employment insurance of those whose jobs are displaced by global forces, and take much more effective steps to eliminate poverty and unemployment.
We should have true national standards for medicare, with a commission at the national level establishing what services should be necessary for all Canadians, from autism therapy to physiotherapy.
As important as it is that we find cures to the diseases affecting Canadians, we must also take much more aggressive national action against environmental causes of ill health and disease, such as by identifying and eliminating the toxic chemicals and pesticides to which Canadians are exposed daily.
The time is long overdue for the national government to:
Put an end to the costly, wasteful barriers to trade among provinces.
Create a single national securities regulator.
Take firm steps to make Canada the greenest country on the planet, with a minister of the environment on a par with the minister of finance.
We can start by putting a price on carbon and introducing a carbon levy on polluting activities, including a levy on gas at the pump. This will provide substantial dedicated funding for a wide range of initiatives designed to increase energy efficiency and conservation, and develop new sources of clean, renewable energy, including a national electricity grid. The additional revenues can contribute to a reduction in personal income taxes and ensure that business and investment taxes remain competitive.
The time is also long overdue for a well-funded national infrastructure program to help establish public transit, new sewers, safe water supplies, and ensure repairs to existing bridges, roads and railways.
Finally, almost every aspect of our daily lives has a global dimension. All the serious challenges we face - whether climate change, dreadful poverty, wars, sicknesses, nuclear proliferation, terrorism - require global co-operation and decisive national leadership.
With clear global vision and bold national leadership, Canadians are uniquely positioned to be in the front ranks of a world without borders.
Deborah Coyne is a Toronto-based policy analyst and consultant, and ran as a Liberal party candidate in the 2006 general election.

From A Listmate

The OACRS website has the following article: "Moir on bill at upcoming
special education workshop? Follow this link to check it out.

Karen Robinson
AFASE at School
Phone: 905-427-7524

From a friend

Please feel free to forward this email to anyone you think would find
it useful.

Rachel Evans


The festive season, while generally fun can also be pretty
stressful, particularly for those with autism, as it means a break
from routine.

However, with some forward planning you can enjoy the holidays
rather than dreading them.

This time of year is often when we catch up with extended family.
These gatherings can be quite large and overwhelming.

So to see you through any family outings try out the following tips:

1. Explain in advance where you're going and who you're going to be
seeing. Putting photos of the people who are going to be there,
along with a note of their name into a hand held album will help
your child prepare for the event. Look through the album and talk
about the people in the run up to the big day.

2. Pull out your social stories books and go through any that deal
with starting conversations or how to respond to questions.
Practice these at home so that when asked 'how are you?' your child
knows the appropriate response.

3. Arrange in advance with whomever you are going to see for them
to remove any breakable objects - just in case.

4. Don't forget to take along your child's favorite toy and also if
appropriate some quiet activity items like coloring books and pens
or picture books. These can be useful for the car journey too. If
appropriate you may consider taking a preferred DVD/video if there
is somewhere they can watch it for some 'time out'.

5. With regards to food either feed your child before you go or
take along their food with you. It would be best if you mentioned
in advance any dietary requirements to your hosts and to let them
know if your child will be eating or not.

6. A change of clothing is always a good idea in case of accidents.
A coat and walking shoes can come in handy too, as heading out for
a quiet walk can be an effective way to calm anxiety due to crowds
or unfamiliar faces.

7. When you arrive at your destination identify a quiet area that
your child can use if they need to in advance. This will allow you
to act quickly if needed.

8. If your child feels comfortable doing so, have them hand out any
snacks to the other guests. This can be a great way to practise
their socialization skills.

9. If you're going to be in a restaurant or crowded public place
over the holiday a pair of earplugs or headphones with some
soothing music can help to moderate noise.

10. The key to a successful outing is to stick, as much as you can,
with the methods and routines you use at home. So, if you use a
sticker chart take it along and add stickers to it as you would at

Best wishes for a happy holiday season.


end of mailing

Friday, December 21, 2007

autism news articles dec 16th - 21st 2007

Autism News Articles
Thiis is AFA's last mailing before Christmas
December 16TH 2007- December 21st 2007
4 days till Christmas!
AFA (The Alliance for Families with Autism) prepares these news articles as a courtesy to your inbox and can be found archived at:
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Experts look at dentistry blindspot
HUMAN RIGHT: A shortage of trained dentists and lack of structure have severely hindered the right of disabled persons to accessible and dignified dental treatment
By Meggie Lu
Sunday, Dec 16, 2007, Page 2
"In past decades doctors have offered dental treatment to people with special needs, but without an organized structure or system."
Huang Shun-te, director of the department of dentistry at Kaohsiung Medical University
Starting in early childhood, we have all been told to brush our teeth and floss daily and that oral health is important.
Although the majority of people may cringe at the sound of a dental drill and take access to dental care for granted, "such a privilege is a basic human right that is often denied to persons with disabilities," said Chan Hsun-cheng president of the Taiwan Dental Association.
Following on the heels of International Human Rights Day on Monday, the International Conference of Oral Care for People with Disabilities in Taipei yesterday provided an alternative perspective on the healthcare system offered to disadvantaged groups.
"In past decades doctors have offered dental treatment to people with special needs, but without an organized structure or system," said Huang Shun-te , chairman of the conference organization committee and director of the department of dentistry at Kaohsiung Medical University .
The shortage of trained dentists for special care provision severely hinders the right of disabled people to accessible and dignified oral treatment, he said.
Drawing from a recent study in Taiwan , Huang said that "people with disabilities have various oral health problems."
"The more severe the disability, the worse the oral health," he said.
In light of this, field professionals from 16 countries including Japan , the US , Singapore , Canada and Belgium were invited by the association for the three-day seminar.
The participants at the conference, whose theme was "Equal right, equal opportunity and equal dignity," discussed methods to provide better care to a number of different groups with limited abilities.
"Oral care for people with special needs may pertain to more people than one may think," said Luc Martens, president of the International Association of Disability and Oral Health. For example, "with the expanding aging population globally, the field may include you and me" in future.
Children provide another example, said Ichijiro Morisaki, president of the Japanese Society of Disabilities and Oral Health.
"A growing percentage of children [6.3 percent] in Japan today require special care, as they are afflicted with learning disabilities, attention-deficit hyperactivity disorder and high functioning autism," he said.
"I believe it is not an individual phenomenon, but a global trend in developed countries," Morisaki said.
While 83 percent of dentists say they are willing to treat disabled patients, many have the misconception that this means people with non-dentistry related afflictions such as heart problems or liver disease, said Clive Schneider-Friedman, a professor of dentistry at the University of Western Ontario in Canada .
A number of solutions were discussed yesterday, including the need for patients to gain recognition.
Marten said the renaming of the International Association of Dentistry for the Handicapped (IADH) in 2000 was an essential element in fostering such recognition.
The term "handicapped," deemed pejorative by many, was replaced with "disability" to reflect UN and WHO terminology in describing anyone with functional limitations for physical, sensory, or mental causes, Marten said.
Since the name change, the association has expanded the scope of its patients to include persons with mental retardation, the elderly, children, persons with autistic spectrum disorder, asthma, cerebral palsy, developmental delays and hearing or visual impairment, he said.
Another part of the solution was government policies, the specialists said.
Oral education for caretakers who see to the needs of patients who are incapable of tending to their own oral hygiene is also important, Schneider-Friedman said. Caretakers must "reset their priorities and realize the importance of dental health."
"Ultimately, dental care in this sense should be handled with increased sensitivity and understanding," said professor emeritus Susuma Uehara of Nihon University in Japan . "In other words, the good old `TLC' -- tender loving care."
This story has been viewed 646 times.

from a listmate
o: Karyn Dumble
Sent: Tuesday, December 11, 2007 10:16 AM
Subject: Autism Ontario on the news

Hi Presidents and Staff:
Here is a link to last night's Global National news. Lisa Wilson and Tia Vetere from our Durham Chapter are featured.
Click on the link and then choose "Autism Breakthrough".
Congratulations to our volunteers for being there when the media calls and stepping up to be interviewed (on camera!) with no notice.

Have a great day,
P Please consider the environment before printing this e-mail

From a listmate

Posted on Tue, Dec. 18, 2007 01:21 PM
Missouri panel urges improved support for autism
The Kansas City Star
In a report released today, a state panel made clear that Missouri needs to significantly beef up and better coordinate services for people with autism-spectrum disorders.
In a series of hearings held throughout the state, theMissouri Blue Ribbon Panel on Autism listened to service-providers, people with autism-spectrum conditions and their friends and family members. Based on those comments, the panel recommends that the state provide a seamless array of supports, beginning with more — and more-uniform — testing for infants and toddlers, and continuing through the lifespan with supports for autistic people attending college and working.
It also proposes establishment of an ongoing Missouri Commission on Autism-Spectrum Disorders and an infusion of funds and support for the state’s existing Office on Autism Services, which is staffed on a part-time basis. In addition, the report stresses the importance of collecting data on the number of people in Missouri with autism disorders, and the types of services they need.
To reach Karen Uhlenhuth, call 816-234-4783 or send e-mail to See The Kansas City Star on Wednesday for more community news.

From a listmate



In January, TVO will be offering an encore presentation of two programs that first aired on November 18, 2007 as part of a special TV-web autism event. On Sunday January 6, watch for a rebroadcast of The Autism Puzzle and After Thomas at 8 and 9 pm respectively. Descriptions follow below.

The special Your Voice webcast discussion on autism (which also took place on November 18) and the complete package of online resources that were also developed for the event, can be reviewed at anytime at

We hope you’ll share this information with your members and those on your distribution lists.


Angela Garde
Marketing and Communications
416.484.2600, ext 2305


The Autism Puzzle
Sunday January 6 at 8 pm on TVO

In The Autism Puzzle at 8 pm, filmmaker Saskia Baron brings personal insight to this historical examination of autism. Baron's older brother Timothy was one of the first kids in Britain to be diagnosed with the condition in 1961, a time when autism was largely misunderstood by doctors and the general public. The film asks, Is there an epidemic of autism today, or have awareness and even the definition of autism changed in the 60 years since the term was first coined? Is there any connection to the infant vaccination for measles, mumps and rubella? The documentary also looks at current research into cause, treatment and prevalence, and explores the latest experimental research into the autistic brain in Finland , England and America .

After Thomas
Sunday January 6 at 9 pm on TVO

Following at 9 pm is the feature-length drama After Thomas. Inspired by a true story, this moving film depicts the struggles of a couple to care for and communicate with their autistic child. Keeley Hawes and Ben Miles play the parents of six-year-old Kyle (Andrew Byrne), who can't communicate his fears. His mother Nicola has given up everything to care for her only child, and her fierce determination to break into Kyle's isolated world places an intolerable strain on her marriage. Into this setting comes Thomas, a golden retriever who opens the door to possibilities the family could have never imagined.

About TVO
TVO is Ontario 's public educational media organization and a trusted source of interactive educational content that informs, inspires and stimulates curiosity and thought. We are committed to empowering people to be engaged citizens of Ontario through educational media.
For more information, please contact TVO Communications:


Shared from a friend from another list:

> On the first day of Christmas, the good Lord gave to
> me: my special child with autism.
> On the second day of Christmas, the good Lord gave to
> me: a heart full of love for my special child with
> autism.
> On the third day of Christmas, the good Lord gave to
> me: an ache in my heart and a heart full of love for
> my special child with autism.
> On the fourth day of Christmas, the good Lord gave to
> me: a tear in my eyes, an ache in my heart, and a
> heart full of love for my special child with autism.
> On the fifth day of Christmas, the good Lord gave to
> me: an unsuspected strength for the tear in my eyes
> and the ache in my heart and my heart full of love for
> my special child with autism.
> On the sixth day of Christmas, the good Lord gave to
> me: a ray of hope, an unsuspected strength for the
> tear in my eyes and the ache in my heart and my heart
> full of love for my special child with autism.
> On the seventh day of Christmas, the good Lord gave to
> me: a sense of humor,
> a ray of hope, an unsuspected strength for the tear in
> my eyes and the ache in my heart and my heart full of
> love for my special child with autism.
> On the eighth day of Christmas, the good Lord gave to
> me: supportive friends, a sense of humor, a ray of
> hope, an unsuspected strength for the tear in my eyes
> and the ache in my heart and my heart full of love for
> my special child with autism.
> On the ninth day of Christmas, the good Lord gave to
> me: remarkable doctors, supportive friends, a sense of
> humor, a ray of hope, an unsuspected strength for the
> tear in my eyes and the ache in my heart and my heart
> full of love for my special child with autism.
> On the tenth day of Christmas, the good Lord gave to
> me: an appreciation of small accomplishments,
> remarkable doctors, supportive friends, a sense of
> humor, a ray of hope, an unsuspected strength for the
> tear in my eyes and the ache in my heart and my heart
> full of love for my special child with autism.
> On the eleventh day of Christmas, the good Lord gave
> to me: a sense of pride, an appreciation of small
> accomplishments, remarkable doctors, supportive
> friends, a sense of humor, a ray of hope, an
> unsuspected strength for the tear in my eyes and the
> ache in my heart and my heart full of love for my
> special child with autism.
> On the twelfth day of Christmas, the good Lord said to
> me: "REACH OUT and SHARE your sense of pride, your
> appreciation of small accomplishments, your remarkable
> doctors, your supportive friends, your sense of humor,
> your ray of hope, your unsuspected strength Wipe the
> tear from your eyes, ease the ache in your heart and
> know your heart's full of love for your amazing child
> with autism."
> ************ ********* ********* ********* *********
> ***
> Merry Christmas to all of you parents, caregivers,
> teachers and other professionals who have shared tears
> and aches, but also pride, appreciation, friendship,
> humor, HOPE, strength and love. GOD BLESS YA'LL. AND
> May Next Year Be Better!
Amanda Locke
Parent Mentor
Evans County Schools
(912) 739-3544 Ext 237

Google alert
Actors outdo politicians in promoting causes
Politicians in Ontario have to be noticing the way celebrities from the world of entertainment are able to draw attention to causes they take up, and wondering how they can cash in on it.
The entertainers getting serious are not necessarily as far off as U.S. actor George Clooney protesting against atrocities in Darfur and talk show host Oprah Winfrey boosting Barack Obama for president - it already is happening on a smaller scale and with less known personalities here.
In the latest example, dishwashers and other lowly paid staff at a Toronto hotel last month won pay raises of up to 18 per cent over three years and credited it partly to U.S. actor Danny Glover.
When Glover, Mel Gibson's cop sidekick in the Lethal Weapon movies, spoke at a rally in support of the hotel staff and other poorly paid workers in sports stadium concessions, all four major daily newspapers in Toronto reported it.
Three of the papers ran pictures of him at a microphone under headlines such as "Actor goes to bat for workers." Newspapers do not run pictures of ordinary union spokespersons seeking higher wages.
Canadian character actor Eugene Levy, who has a young relative who is autistic, held a news conference in Toronto to ask for a national strategy to help autistic children.
His plea appeared in several newspapers and one ran a story and two pictures - more than some actors get when they win an Oscar.
The papers had headlines such as "Funnyman makes serious pitch," and it could be asked whether they would have published this plea for autism sufferers if a celebrity had not made it.
Actress Bo Derek, noted for physical assets in trivial movies decades ago and in one described as a perfect 10 among women, called at the legislature to denounce trafficking in exotic animal parts.
Two papers reported her views, with pictures, and one headlined it "the only time a Queen's Park meeting rated a 10."
Daryl Hannah, another actress from the past, helped launch a show in Toronto promoting energy saving, and most of the space in one paper was a picture of her waving - again raising doubt whether it would have reported the event at all if the actress had not been there.
Singer and Juno Award winner Sarah Harmer was among residents of the scenic Niagara Escarpment who opposed expansion of a quarry there.
A paper headlined its report, "Singer's group rocks plans of gravel kings" and began its story: "Sarah Harmer won't need to sing the Escarpment Blues any time soon."
The story did not identify other opponents, indicating that readers would be more interested in the entertainer involved. This was another protest that had some success.
When four Toronto women raised money to help cancer patients buy a drug the province does not offer, news media wrote about actress Cynthia Dale and three friends coming to the rescue, and again it could be asked whether they would have reported on it if a well-known actress had not been a participant.
Actors held a news conference at the legislature seeking help for the many struggling members of their profession and sent well-known performers Fiona Reid and Sonja Smits to speak, not the poor, mostly young hopefuls who have to spend most of their time waiting on tables - and again, the news media reported them.
Aboriginal leaders - to cite just one more example - got huge space in papers merely by asking Hollywood actor Leonardo DiCaprio to come and oppose a new diamond mine in northern Ontario, after he made a movie showing harm caused by the diamond trade in Africa.
One criticism often made when entertainers support political causes is that they do not influence people as much as their ability to get their names in the media may suggest.
But the actors and singers are showing an ability to inform the public about their causes that others do not have, which has to help them, even if it does not always bring a happy ending.

From a listmate

Season's Greetings

Wishing you a wonderful time during the holidays. All the best to you and yours for the New Year.

I just wanted to share an article, that was published today in the Stouffville Free Press. Our Autism Ontario York Region Chapter held a Santa event recently, and Nell was one of the children that had her photo taken with Santa. Thought you would enjoy reading the article.

The holiday card has Nell's school picture and the actual photo that appears in the article.

Thinking of you,



The Dr. Phil show
AFA Apologizes for not getting the following post out, due to technical difficulties, the day before the show.

Parents' Ultimate Test: Dealing with Autism
The ultimate test for any parent is loving a child who is difficult, sometimes frightening, to the whole family. It’s a test parents of autistic children are put to daily. With more and more children being diagnosed with autism, Dr. Phil shed's light on this mysterious disorder.
Child on the Verge?
Ten-year-old Luz throws screaming tantrums, barks like a dog and tells his mother, Sara, that he plans to kill her. Sara has long felt despair at Luz’s out-of-control behavior, yet she was shocked when he was diagnosed with autism.
"My mom is dead. I'm going to eat her carcass."
A Reason to Hope
A member of Dr. Phil’s own staff achieved miraculous results for her autistic child and her whole family through an intensive program. Could a similar treatment work for Luz? Plus, what causes autism? Child care expert and pediatrician Dr. Jim Sears weighs in.
Are vaccinations to blame for a diagnosis of autism?
Victims without a Voice?
Some mothers in Las Vegas say a teacher allegedly abused their autistic children, and they’ve filed a lawsuit. Hear them recount the painful details of the alleged abuse. What are their chances of winning in court?

“Suddenly, Christopher would just start crying for no reason.”

Learning to Dance in the Rain
Meet five children with autism, and hear from their mothers as they reflect on the disorder. Plus, Dr. Phil reveals the early warning signs to look for in your child.
Find out what every parent should know.

* Extreme Disorders
* Asperger's Warning Signs
* Advice for Parents of ADD/ADHD Children
* Parenting Through Change
* Parenting Dilemmas: Dr. Phil's Advice

Email this pageTapes and transcriptsFeedback

From a listmate

Lisa sacrifices it all to care for her autistic son
AMY LUFT, The Gazette
Published:Â Wednesday, December 19
When 3-year-old Jesse was found to have autism last year, his mother, Lisa, realized she'd have to devote her life to caring for him. She does her best to enrich his life, but it means she's made a lot of sacrifices.
Lisa and Jesse spend every morning at daycare. She helps him socialize with other children. Lisa volunteers while she keeps an eye on the boy.
Thankfully, Jesse fits in. Unlike many autistic children, he is very sociable and gets along well with the other children in the group, though he's unable to speak with them. Jesse is mute and developmentally delayed.
He is like an 18-month-old baby. He can't feed himself. He's in diapers. I have to do everything for him," said Lisa, 27.
Lisa is divorced, and though her ex-husband takes care of Jesse every second weekend, the rest of the time, she devotes herself to her son. She can't work, so the two survive off a total of $750 a month in child support and social assistance.
Lisa and Jesse are among the thousands of people who are to receive a $125 cheque from The Gazette Christmas Fund this year. The money goes to make the holiday season a little bit brighter for needy Montrealers.
Lisa would like to provide more for her son. She takes every opportunity to engage him in his surroundings.
"If I see something interests him, I make a point to explore it with him as much as possible."
Lisa learned of an autism program at Montreal Children's Hospital and would like to enrol her son, but the program costs $5,000 - and the government won't subsidize it.
"I've tried to get them to help pay for it. I think it's unfair I should have to pay for this program he needs," Lisa said.
As a single mother, Lisa often gets down about her situation. She said she cries a lot, but tries to stay positive. She hopes Jesse will one day learn to speak and become independent enough to care for himself when she's gone.
Lisa and Jesse will celebrate Christmas with her mother, who has been a constant source of support for the family. Lisa plans to spend the Christmas Fund money on a toy and diapers for her son.
Despite the hardships, Lisa says, Jesse always makes her smile. "He's such a happy, gentle, smart boy," she said. "People need to know autistic people aren't dangerous and they're not stupid. They're very intelligent."

From another list

Parents, educators and therapists are invited to join us for an interactive lecture series, consisting of video and hands-on demonstrations and active participant practice, designed to advance the child’s play, peer and social skills. Participants will be given “assignments” each week to practice the topics covered.
Module 1 – The Importance of Play: Understand the stages of play and its impact on other areas of development. Participants will be able to discuss their child’s current level of play and social skills and outline individual goals for the series. January 3
Module 2 – Play and ABA: How to teach the “rules” of play such as turn-taking, following structured and rule-based games, and peer modeling using an Applied Behavior Analysis approach. January 10
Module 3 – Play and RDI: How to further interactive and social play and encourage peer enjoyment using a Relationship Development Intervention approach. January 17
Module 4 – Playing with Peers: How to facilitate play in school, at home with siblings, and in the community among peers. January 24
Module 5 – Applying the Principles: Review and discussion of individual goals and implementation techniques. Participants who attended all five modules will create specifically tailored play and social skills goals and strategies to address these areas. January 31
7 – 9 pm at the Greenville Community Church
270 Ardsley Road, Scarsdale, NY
Members – Free
Non-Members – $25 per Module or $100 for all 5 Modules
Limited to 25 Participants – Please Reserve Early
Navigating the Spectrum – (914) 826-5300
www.navigatingthesp info@navigatingthes

from a listmate

Gene tinkering curbs autism symptoms in mice
Pill in the pipeline could have same effect in people, scientists say
In Colombia, hostage's letter hits home
Paul raises millions in 24-hour effort
Navy saves teen whose appendix burst on cruise
Bank gives staff money -- to help people in need
7-year-old hero: Child shot protecting mom
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Study reveals why monkeys shout during sex
The bride wore white, 2-ply toilet paper
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By Steve Mitchell
Special to MSNBC
updated 2:29 p.m. ET Dec. 19, 2007
Scientists could be on the verge of a new treatment for autism, if the results of animal research hold up in people. A study in mice suggests that several drugs, including one that is poised to enter trials in human patients as soon as next year, could improve brain function and reverse the symptoms of some autistic patients.
So far, the research indicates the drugs will only be effective for one form of autism that is caused by a mutation of a gene on the X chromosome, a condition known as fragile X syndrome. But the researchers think there's a possibility the medications could also work for other cases of autism where the cause is unknown.
���I really hope that we can go beyond fragile X and see significant improvement in children with other types of autism,��� said Mark Bear, a neuroscientist at the Massachusetts Institute of Technology who led the mice research.
Story continues below ���
Autism disorders strike 1 out of every 150 children. Currently there is no cure for autism, a complex developmental disorder that impairs a person���s ability to communicate and relate with others and is associated with a range of unusual repetitive behaviors, such as obsessively arranging objects.
The exact cause of the disorder remains elusive but it has been linked to a variety of genes, including the fragile X mutation that can lead to both mental retardation and autism. Most patients with fragile X will show some autism symptoms and about 20 percent will meet the criteria to be considered autistic. The mutation is thought to lead to mental problems because it causes hyperactivity of a brain protein called metabotropic glutamate receptor 5 (mGluR5) that normally plays a role in learning and memory.
A team led by Bear wondered if reducing levels of mGluR5 protein could restore normal brain function. The researchers used a combination of genetic engineering and selective breeding to produce a line of mice that had both the fragile X mutation and toned down levels of the mGluR5 protein in their brain. The intent was to get an idea of what would happen when the protein was suppressed using a drug in human patients.
In a finding that the researchers described as ���remarkable��� in Thursday���s issue of the scientific journal Neuron, the mice — which should have had mental retardation and autism-like symptoms due to the fragile X mutation — instead showed near-normal brain function and memory.
Click for related content

Guide to the spectrum of disorders
The signs and symptoms of autism
Fever can unlock autism's grip
Autistic kids have brain abnormalities
Pill in the works
That was exciting in and of itself, because it indicated that blocking the mGluR5 protein could lead to improvements in some forms of autism and mental retardation. But Bear said the even more provocative implication is that a compound that does just that already exists. A few years ago, he founded Seaside Therapeutics, a small pharmaceutical firm in Cambridge , Mass. , that is developing a mGluR5-blocking drug called STX107. The agent, which would be taken as a pill, has passed all the safety studies required for beginning studies in people.
Autism drugs in the pipeline

Three drugs are being developed for treating Fragile X/autism by blocking a brain protein called metabotropic glutamate receptor 5:
Drug: STX107
Firm behind it: Seaside Therapeutics
Status: Company anticipates trials in patients starting in 2008
Drug: Lithium
Firm behind it: Rush University
Status: Currently in clinical trial in patients
Drug: Fenobam
Firm behind it: FRAXA/Neuropharm
Status: Already studied in humans for anxiety; slated to enter trials in Fragile X patients in 2008

Randall Carpenter, Seaside 's president and chief executive officer, said he's ���cautiously optimistic,��� about STX107's potential to reverse autism symptoms in people. ���These are really exciting findings, but we really don't know how helpful it's going to be until we test it in humans,��� he said.
Seaside now plans to meet with the Food and Drug Administration to request approval to begin clinical trials involving people with fragile X syndrome and autism. Carpenter anticipates starting the initial human studies sometime next year.
Outside researchers also were enthusiastic about the potential of the compound.

���It seems very promising indeed,��� said Matthew Belmonte, a neuroscientist at Cornell University 's Department of Human Development. He said the study in mice suggests that drugs that suppress mGluR5 can restore brain function without causing any other ill effects. That bodes well for human trials, Belmonte said, but he noted that suppressing a gene in an animal study is not the same as using a drug in people so there could be unforeseen risks that may turn up.

Not everyone is on board, however. Sophia Colamarino, a neurobiologist and vice president of research for the advocacy group Autism Speaks, which helped fund Bear's research, said the finding ���give us hope��� that this could be a viable strategy for treating autism, but she added that it's too early to tell whether STX107 will improve autistic behaviors in people. The drug could reduce mGluR5 levels, but autism is such a complex disease, this may not be enough to restore normal behavior in patients, Colamarino said.
Two other drugs in the works
If the drug does fail, there still may be hope for patients and their families. The Fragile X Research Foundation (FRAXA), which co-funded STX107 research, is supporting investigations involving two other drugs that block the same protein.
Lithium, which is used for treating depression and bipolar disorder, is being investigated for its potential to treat autism and fragile X by researchers at Rush University in Chicago .
And another compound called fenobam — initially developed as an anti-anxiety medication in the 1970s and then abandoned — is being revitalized for fragile X by Neuropharm, a Surrey , UK-based pharmaceutical company.

���We believe that drugs which block mGluR5 have enormous potential for the treatment of fragile X and related developmental disorders, including many cases of autism,��� said Katie Clapp, president and executive director of FRAXA.
Steve Mitchell is a science and medicine writer in Washington, D.C. His articles have appeared in a variety of newspapers, magazines and Web sites, including UPI, Reuters Health, The Scientist and WebMD.


Mental health Section Front
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Zoloft defense: Lawyers appeal teen's sentence
Fever can unlock autism's grip

From a listmate

Mother of three autistic boys owes $13,597.64
Provincial audit takes issue with Sunshine Coast resident's use of invoice book and wants receipts
Pete McMartin, Vancouver Sun
Every three weeks, as regularly as clockwork, Kathy Kyler receives the same bill in the mail.
It asks her to pay $13,597.64.
It is from the Ministry of Children and Family Development's Autism Funds Processing Unit.
Kathy, who is 50, is the mother of three children. She has a 16-year-old boy, Alex, and two 11-year-old identical twins, Evan and Nicholas.
The twins are autistic. Evan is severely autistic and classified as low-functioning -- he does not speak -- and Nicholas is high-functioning.
Kathy lives on the Sunshine Coast , where autism services are spread thin. She is divorced, which, because of the extreme stress in such cases, is a not uncommon phenomenon among couples of children with autism.
She is also on disability. She receives $24,000 a year. She suffers from hepatitis C, which she believes she contracted during the delivery of the twins at Women's Hospital. Her health is failing, she said, and she needs a liver transplant. She also suffers from a compendium of other ailments -- lupus, fibromyalgia, autoimmune disease and, she added, depression.
"I wonder why," she deadpanned.
For the treatment of the twin's autism, Kathy receives from the MCFD in the neighbourhood of $6,000 a year per child. With this, she pays for their therapy and the behavioural consultants she must ferry in from time to time. As any parent of a child with autism can tell you, autism therapies are expensive, exhaustive and bewilderingly varied.
Because the B.C. government leaves it up to parents to choose which therapy they feel is right for their children, the funding is individualized and direct. Parents are then expected to submit receipts to the government to show how the funds were spent.
Since her boys were three, when they were first diagnosed, Kathy did this without incident.
But in April, she received word from the ministry that her file was being audited for the previous year and she would receive no more funds until the audit was complete.
Then in June, she received the bill for $13,597.64, virtually all the funds forwarded to her by the ministry between March 2006 and May 2007.
It seems the ministry was unhappy with Kathy's accounting. For years, she had submitted records of her costs from an invoice book. It was this to which the ministry objected. It demanded receipts as proof of accountability. Thus, the bill.
After weeks of phone calls and e-mails to the ministry, Kathy succeeded in getting her funding reinstated, but the funding would now go directly to her children's behavioural consultants.
The bill, however, stood.
So Kathy turned to the provincial ombudsman to look into the affair. But the ombudsman, she said, sided with the ministry. (An ombudsman official would only say that her complaint "was not substantiated.")
But according to Clair Schuman, executive director of Autism Community Training (ACT), the society the provincial government contracts to provide programs and information to parents of children with autism, Kathy's predicament is not an isolated one. Kathy herself said she knew of at least two other families in her area with the same problem.
"We have been getting an increasing number of calls and complaints [like Kyler's] in the last six months," Schuman said.
"It's not an issue of families not being accountable, it's an issue of the long delay between parents receiving funding and the audits the ministry does. Parents put in their expenses and continue to receive funding through the year, and they assume, I think logically, that if they submit the documents they have been and continue to receive funding, then everything is all right."
Then, a year later, Schuman said, if the ministry finds something amiss in the audit, or objects to a therapy the parents have chosen, they receive a whopping bill.
"So it leaves the parents -- especially those most vulnerable -- in a real dilemma at the end of the year."
One of those was Debra Pugh, director of research and training for ACT. Pugh, a former foreign correspondent for the Guardian newspaper of London , and as knowledgeable of funding agreements as anyone, was asked by the ministry to remit in the neighbourhood of $5,000.
"The unfairness of it," Pugh said, "is that [parents] have been doing something for the same way for three or four years, but for some reason, the ministry has decided to change the way things are done. But instead of warning parents and saying things are changing, they are telling the parents they have to refund the money without any forgiveness at all."
MCFD Minister Tom Christensen declined to comment on Kyler's case, saying he didn't know "the intricate details of the file."
"There's no question this is a challenging situation," Christensen said, "and we will continue to work with her to ensure the welfare of her children is taken care of."
But because these were tax dollars being directed to parents, he said, there had to be a high level of accountability.
Christensen did admit, however, that "the back end of the process" -- that is, the delayed year-end audit -- "is certainly taking more time than I would like."
In the meantime, Kathy Kyler wonders how to handle a debt she can't pay.
"I have no way to pay it, no matter what. I'm never going back to work, because I can't. I'm in an incredible amount of pain, and I save all my energy for my children." or 604-605-2905

from a listmate

---- Original Message -----
From: Karen Robinson at AFASE
To: ;
Sent: Thursday, December 20, 2007 4:02 PM
Subject: [kinarkautism] Fw: Special Education Advocacy Workshop on January 5, 2008

There is still lots of space in this workshop. Please forward to anyone who might be interested in attending.

For workshop details click here: http://www.afase. com/Workshop. html

Click here to register: http://www.afase. com/Workshop_ Registration. html

AFASE at school

Advocating For Appropriate Special Education 114

Saturday, January 5, 2008
10:00 a.m. - 4:00 p.m.

This full-day workshop is designed to empower you by providing current special education
information, strategies, and skills that will enable you to advocate for appropriate special education
programs and services in a way that is both assertive and collaborative

Audience: Parents, Students, Teachers, Educational Assistants, and Community Organizations

Lindsay Moir who is retired from the Ministry of Education is considered to be an expert in special
education issues. He will present an interactive, discussion-based workshop on Current Issues in
Special Education.

Karen Robinson the owner of AFASE at School will present Special Education Advocacy:
Everything you Should Know. Topics include: The Rules of Advocacy, The Special Education
Program, IPRC's and the Appeal Process, The good IEP, Writing Measurable Goals and Expectations,
and Writing Needs Statements.

Each presentation will allow time for Q & A

Coffee and pastries, and a light lunch will be provided

Toronto Police Services
42 Division, Community Meeting Room
242 Milner Ave. E.
Toronto, Ontario M1S 5C4
General area: North of Hwy 401, West of Markham Rd.


*Early bird rate: $80.00
*At the door: $100.00

To register use the registration form using this link
http://www.afase. com/Workshop_ Registration. html
or e-mail: karen.robinson@
or phone: 905-427-7524

From a listmate

Helping Police Officers Understand the Autistic
Published: December 21, 2007
BRICK TOWNSHIP, N.J. — An autistic boy is discovered standing in the middle of a busy road, on his way to the beach. A young girl with autism outsmarts a number of locks, leaves the house before her mother wakes up and is found, naked but alive, in a neighbor’s pool.
At a recent training for police officers here, both cases illustrated the often delicate task of dealing with people who suffer from autism, a devastating neurological disorder that often strikes in childhood and that impairs one’s ability to communicate and to relate to others.
In the training, the officers were taught that turning off flashing lights and sirens on a police car could make the difference between a peaceful or chaotic encounter, and that if they asked someone with autism if they wanted to waive their rights, they might find that the person waved back at them.
People with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than others, according to an article in the F.B.I. Law Enforcement Bulletin in April 2001.
A co-author of the article, Dennis Debbaudt, who is also the author of “Autism, Advocates and Law Enforcement Professionals,” led the training. He noted that a 2007 study by the federal Centers for Disease Control and Prevention showed that 1 in 150 children in New Jersey have received a diagnosis of autism, a rate 15 times higher than previous estimates and among the highest in the country.
But when Mr. Debbaudt asked whether any of the police officers, from departments throughout New Jersey, had received training on autism, either at police academies or on the job, only a few raised their hands.
The training, sponsored by Parents of Autistic Children, a nonprofit service group based in Hazlet, featured videos, lectures and the personal accounts of parents whose children have a form of autism. Among them were Mr. Debbaudt and Gary Weitzen, director of the parents’ group, whose son was the one found in the middle of the road, headed for the beach.
Mr. Debbaudt told the officers that they should understand autism “for the safety of others, and so you can go home safe to your families, so you can make the best use of your time and resources, enhance your communication skills and avoid litigation.”
He cited the case of Calvin Champion Jr., a 32-year-old man with autism who died in 2000 after Nashville police officers used pepper spray on him and subdued him. His family filed a federal lawsuit against the police and the social service agency caring for him, and was awarded $4.4 million.
Mr. Debbaudt said he had heard of 6 to 12 cases each year in which people with autism are harmed, hit with a stun gun or killed by law enforcement officials.
The officers were told to take plenty of time and be calm when interviewing autistic people. Some are crime victims, some are suspects, but the majority who come to the attention of the police have wandered away from their caregivers, often without an understanding of the dangers of traffic or open water, which often attracts them. In fact, drowning is a leading cause of death for people with autism, Mr. Debbaudt said.
People with autism may be very afraid of or very drawn to police dogs, Mr. Debbaudt said. They may be attracted to an officer’s badge and try to grab it, and they may panic if their routines are broken, if their favorite objects are taken from them, or if surrounding sights, sounds and smells overwhelm them.
Similar training sessions have been offered around the country. Autism Speaks, a nonprofit advocacy and fund-raising group, worked with the Chicago Police Department last spring, and it is working on a safety tool kit for all first responders, said Lisa Goring, director of family services for the group.
“We’ve heard from families as well as from professionals that they just need more instruction, certainly in terms of first responders understanding that a person with autism may not respond appropriately or may not respond at all when given a command,” she said.
A bill cosponsored by State Senator Loretta Weinberg would require autism awareness programs statewide for emergency medical technicians, police officers and firefighters. The bill was passed by the Assembly in March, and awaits action in the State Senate.

From a listmate

Ask Lindsay Moir:
Holiday thoughts for your consideration
Friday, December 21, 2007
At this holiday season it is important to look at the connection betwen religions and the care and nurture of special needs children and adults. These are some "holiday" thoughts for your consideration.
One of the signs of a healthy society is the manner in which we care for those who have special needs. In a multi-cultural society like Canada , and particularly in Ontario 's larger cities, we are surrounded by many different religious beliefs and traditions.
Happy belated Hannukah if you come from the Jewish tradition — the Torah teaches that a man will be judged on what he does for the widows and orphans. It is a religious duty to care for the less fortunate, and in these communities I have seen strong peer support for parents of exceptional children. Although the private Jewish schools do not tend to have the resources available in the Public system, I have observed several unique and creative programs which respond to the needs of very challenging students. At this time the majority of Jewish exceptional students can still be found in the public system.
Happy Eid to those of you who practice Islam. We all have become aware of the work of the Red Crescent as it responds to needs in the Muslim world. In this province I have seen many families of Muslim special education children receive support (sometimes financial, but mostly time and human resources) from their mosque and religious communities. In fact, this type of support most often typifies the "it takes a village to raise a child" approach. Large families and extend families can be an important respite for those facing the challenge of raising an exceptional child. I am meeting many more Muslim staff in the community services agencies that I deal with. Many second generation young women, in particular, are attracted to this kind of work (some men too!) and provide a bridge socially, culturally and language-wise for newcomers trying to navigate the system.
Merry Christmas to those of the Christian tradition. In Europe and North America much of the education of exceptional children began in the Church. Even today in parts of Europe , Special Education is primarily provided by religious orders and "charities."
Here in Ontario we have "secularized" our hospitals and school systems, primarily in response to our multi-cultural demographic. BUt don't forget where they came from.
When I deal with providers of foster care, I am amazed by the large number of people who have a strong faith-based "call" to care for the "children nobody wants".
In dealing with Young Offenders, many of whom have Learning Disabilities and FAS, a large proportion of those agencies who support these students unconditionally (i.e. Salvation Army, Elizabeth Fry Society, John Howard Society) have a religious connection.
Our other religious traditions from across the globe share a communal caring for people who are different too. All of the major religions value the "humanity" of each person and ask us to care for our fellow man.
Canada can be justly proud of Jean Vanier and Henri Nouwen and their work in the L'Arche Communities around the world They have proven that we have much to learn from "Exceptional Adults".
Over the past 25 years we have moved from an Institutional model which warehoused children and adults who were different, to a Community Integrated model. Within my teaching career I have seen us move from an 'exclusion and segregation' educational model, to one where the vast majority of exceptional pupils are integrated and included.
We do not yet have the perfect system, but as we move towards it, we are guided by our many varied religious traditions which teach us to value each and every unique learner.
To each of you, my best wishes for a Happy Holiday, whatever your tradition celebrates . . .
Enjoy the time with family and friends.
Love, Hope, Joy and Peace are universal values — ones that I wish to each unique person who reads this column.
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario .
E-mail Lindsay at He will answer as many questions as possible.

From Autism Ontario

jobs at Autism Ontario
Make a difference in the lives of individuals with ASD and their families.
Discover the exciting opportunities to work with Autism communities across the province.

Date Posted: December 20, 2007
Position: Resource Development Coordinator
Organization: Autism Ontario
Closing Date: January 18, 2008

Provincial Office Closed for the Holidays
Autism Ontario Provincial Office will be closed from the end of business Friday afternoon, Dec 21st, reopening on January 2nd.

The Autism Holiday Challenge
My child suffers from sensory overload during the holiday season. I suffer from emotional overload. We have a holiday bond. We love it, we hate it, we look forward to it and we dread it. By the time the holidays are over, we’re totally frazzled and a complete emotional wreck.

Parents of autism spectrum kids have a holiday bond too.

We don’t have time to gossip about Aunt Maggie or figure out what to wear. We’re far too concerned about location and environment.
“Where are you celebrating this year”?
“We’re going to my cousin for dinner. She has a garbage disposal in her sink that Matthew loves”.
“Ah! Oh! Dear Me!” Comes the empathetic reply with an understanding nod of the head.

As parents of children with autism, we become more religious during the holiday season. We pray at every moment. We pray our children will show interest in their gifts. We pray they will behave when we’re out visiting. We pray they will sit at the dinner table. We pray they will have a good time. We pray they won’t hit a well meaning aunt as she tries to plant a kiss on their cheek. Most of all, we pray for the courage and strength to ignore the judgments, well intentioned advice and sympathetic looks from friends and relatives.

We scout the stores for gifts for our children when we know what they really want. The perfect gift is a box of “Exemption”. Exemption from crowds, malls and stores. Exemption from smells, noise and strange food on their plates. Exemption from large gatherings and family occasions. Exemption from chaotic unstructured days where nothing seems to make sense.

Don’t throw up your hands in despair just yet. These holiday tips will help you sail through those toughest moments.

Social Gatherings
The bigger the gathering, the more sensory stimulation your child will have to process. A great strategy is to turn your child’s attention away from the noise by focusing on something else. Get a money box and give your child a bag of coins. For each new guest that arrives, let your child put a coin in the box. Rather than dread each new guest, you will find that your child will look forward for people to arrive. This way, he gets to put another coin in the box. If the occasion is not at your house, make sure you arrive a little early so your child can gradually adjust to the increasing noise level as new guests arrive. Make sure to take the money box and coins with you. The money in the box is for your child to keep. Make sure you let your child know he can buy whatever he likes and MARK the shopping day on the calendar so he can look forward to it.

Shopping expedition
Prepare your child ahead of time. Setting a schedule will help your child know what to expect. A good example is to say “On Monday we’re going shopping. First we’ll eat breakfast and then we’ll get in the car. We are going to four stores, then we’ll buy a snack and then we’ll come home”. Be as detailed as you can. Name the stores and the items you plan to purchase. If possible, get to the store early in the morning when it’s still relatively quiet. Take a small entertaining toy with you that will hold your child’s attention. A great idea is a stress ball that lights up when you squeeze it. Buying your child a treat for good behavior is very motivating. It doesn’t have to be big. Noise putty and laser wands produce hours of entertainment.

Two important skills are learning how to give a gift and accept a gift. Start by teaching your child to accept a gift. Wrap at least 5 different items. These gifts should be FUN and contain toys your child enjoys. Examples are “a snake that jumps out of a can”, “light-up maracas” and “neon fans”. Give your child the first gift and use visual or written prompts which demonstrate “Thank you”, “opening a gift” and proclaiming appreciation such as “Wow, this is great!” Teach as many times as necessary but make sure the gifts are unique and entertaining to your child. Use a similar strategy when teaching your child to give a gift. Visual or written prompts should demonstrate “This is for you” and “You’re welcome”. Make sure gifts contain fun items as this will encourage your child to remain present when the recipient is opening the gift. Practice with a sibling or another parent. Teach your child give the gift and use the correct responses such as “You’re welcome”.

The dinner table
How long should my child stay at the dinner table? This is a common question among parents of children on the spectrum. The dinner table is often one of the most stressful parts of social gatherings. First of all, there is “meltdown fear”. If a child chooses this time to have a meltdown, it will certainly be one of the main events of the evening. If a child is unable to stay at the table but has a tendency to place himself in dangerous situations or wreak havoc in someone’s house, it’s impossible to relax and enjoy a meal. Invariably, parents have to take turns to ensure their child is safe. Try some of these helpful tips for a more relaxed evening. If your child is a picky eater, this is probably not a good time to encourage him to try new foods. Let him eat foods he is comfortable with and don’t put anything on his plate that bothers him. If your child refuses to eat anything, that’s OK too. He’ll probably make up for it when he gets home or perhaps the next day. If your child is doing a great job staying at the table but needs a break, use a timer. Set the timer for 5 minutes. When the timer rings, guide your child back to the table. Encourage your child to remain at the table for about fifteen minutes before the next break. If your child is very resistant to being at the dinner table, try using small toys that can be kept on your child’s lap. Some examples are action figures, small cars or simple objects that your child enjoys touching and playing with. This will help direct your child’s focus on the toys, rather than concentrating on staying at the table.

Religious services
Go to your regular Church, Synagogue or place of Worship. If you are out of town for the holidays, try and give your child a brief tour when it’s still relatively quiet. Educate your child about the holidays and explain the customs. Whether it’s decorating the Christmas tree, lighting a Menorah or any other tradition, an understanding of the holiday will make your child feel more connected. Write a social story about religious services so your child is prepared and knows what to expect. The story should contain elements such as who will be leading the service, who your child will sit with and actions your child will be expected to perform such as sitting quietly, greeting people or singing. The story should define when you will be leaving so your child knows there is a finite end. Take along small, non-distracting toys to keep your child occupied. During services empower your child by allowing him to make decisions. For example when your child is expected to sit quietly you could say “We have to be quiet now. Would you like to read your book or play with your Zoo Benders?”

One of the hardest things parents face are the perceptions that others have about their children. They cringe when people stare at their children or make comments within their child’s earshot. While it may appear that children on the spectrum aren’t paying attention, they’re usually taking it all in and parents are afraid for their child’s self esteem. If you notice this happening, stand in the way of your child and the stares. Direct his attention so that he can focus on something specific rather than the comments around him. Because people care so much, they regularly offer advice. While this is well intentioned, parents of autism spectrum kids are tired of receiving advice from people who often have very little understanding about autism. While it’s tempting to give that person a mouthful, try this strategy instead. Imagine their advice written on a piece of paper. See yourself tearing up the piece of paper into little bits and dropping it on the floor. Stomp on the paper, crushing it beneath your feet. As you smile in satisfaction, a big gust of wind blows the bits of paper out the window and the advice is gone. Judgmental comments are sometimes harder to bear and many parent with autism spectrum kids have heard statements like “You should discipline your kids”, “No child of mine would get away with that” and “You shouldn’t let your child behave that way”. If the comments continue and you absolutely can’t refrain from replying try responding with “I totally get where you’re coming from because I used to think exactly the same way. Now that I actually have a child with special needs, I’m far more enlightened. I’ve learned that strategies for typical children simply don’t apply to my child. However, I’m sure you have the best of intentions and I thank you for your concern.”

Enjoy yourself
Don’t forget - it’s your holiday too! While you’re so busy taking care of everybody else, make sure you make the time to enjoy yourself. Having a child on the spectrum has given you a more stressful life than you anticipated. This year you’ve taken care of your children, spent time in meetings, read IEP’s, communicated with teachers and therapists and learned about new services. You’ve also had to take care of your “regular life”. Just like the rest of us, you felt great about yourself when you were being proactive and you felt awful when you thought you could be doing more. That’s how it is when you’re the parent of an autism spectrum child. Well it’s time for you to kick back and relax. If your child needs constant supervision, accept help from nieces, nephews, aunts and uncles. Designate specific times for you and your spouse to take turns watching your child. This way, you know where you stand. As an example, you will eagerly look forward to 7:00pm because for the next hour you’re free to relax and spend time chatting with friends and family. Make the most of this holiday because you deserve the break.

Your friends at Natural Learning Concepts would personally like to wish you and your family a safe and happy holiday filled with love, laughter and joy.

- By Jene Aviram
This article is property of and copyright © 2003-2007 Jene Aviram of Natural Learning Concepts. Reference of this article may only be included in your documentation provided that reference is made to the owner - Jene Aviram and a reference to this site
Disclaimer: It is important to do your own research and make your own informed decisions. Please note Autism Ontario does not endorse any specific therapy, product, treatment, strategy, opinions, service, or individual. We do, however, endorse your right to information.
P Please consider the environment before printing this e-mail

From a listmate

The OACRS website has the following article: "Moir on
bill at upcoming

special education workshop? Follow this link to check it out.

Karen Robinson

AFASE at School

Phone: 905-427-7524

Sunday, December 16, 2007

Autism News Articles Dec 7-15th 2007

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From a listmate

December 4, 2007
Schools can't meet needs of all autistic students
In our view: Cost of not having appropriate schools for the autistic too high
New Brunswick needs a special education system for severely autistic and other special-needs children.
Creating such a system flies in the face of the push for inclusive education, the direction the province has headed for some time. But it would recognize that not all students' needs can be met in a mainstream classroom.
The need for an alternative system was highlighted this week with the story of Nick Mosley, a 15-year-old whose severe autism means he is frequently sent home from school for violent and other inappropriate behaviour.
His mother, Lisa, has nowhere left to turn. She dreads what will happen next time Nick acts out and is suspended or expelled from school. She can't quit work to be home with him because she needs to work to support her family, and there are no facilities for youth like her son because they are supposed to be in school.
More importantly, these children have a right to be in school, a right to an education. It's in everyone's best interests that officials -- who readily admit the needs of severely autistic youth are not being met in a mainstream classroom -- create a system so the Nicks of the world are able to develop to their highest potential. The more we can help autistic youth grow up to be independent autistic adults, the better it is.
Inclusive education is lauded by some as the panacea of the education system. That may come from parents whose children have mild special needs, including autism, and for years were barred from the classroom, denied an education entirely. They were doomed to a life of dependency, on parents, on the kindness of extended family and perhaps eventually on a system that isn't prepared to care for them.
We vigorously applaud the parents who fought for inclusive education. They were advocating for their children's best interest, every parent's job. But the pendulum has swung too far in the other direction and Nick and other severely autistic students are now too often cut out of an opportunity for education.
Yes, a system for the severely autistic and others with special needs will cost money. But the cost of not providing them with the best educational opportunities is sky high. The strain on a family caring for one of these children takes an enormous toll. We know that without adequate support, such as a appropriate school system, marriages break down and other children in the family are at risk of coming off the rails.
Sometimes social services must get involved, sometimes it's the justice system. But it's always expensive whether you measure that in dollars of human suffering.
And it's a cost that could easily be avoided with the creation of an education system geared to the severely autistic and special-needs students.

From a listmate

Excerpt from hansard
Official Record of the Ontario Legislature

Andrea Horwath, MPP for Hamilton Centre and Children and Youth Services Critic for Ontario’s NDP, asked the following question in Question Period in the Ontario Legislature on December 5, 2007:


Ms. Andrea Horwath: My question is for the Minister of Children and Youth Services. On Monday, the minister claimed tremendous progress on the issue of autism. I just want to ask the minister if she really thinks it’s tremendous progress to keep 1,000 children with autism on an ever-growing list for treatment when, four years ago, your Premier promised that they were going to take care of this?
Hon. Deborah Matthews: Thank you for the question. I appreciate the opportunity to again talk about some of the progress we have made for kids with autism since we were elected in 2003. While there is still much to do, we acknowledge that we have made tremendous progress.
Let me just talk about a few of the things. We have removed the age six cut-off that the Tory government imposed, we have tripled funding for services with autism, and we have almost tripled the number of children receiving IBI therapy. In fact, since this Legislature last met, we have expanded IBI even further, to 210 more children. We’ve announced a new respite program to give more than 3,000 families—the parents—a break from the difficult challenges of having a child with autism, and more than 800 kids with autism have gone to summer camp thanks to a new program we have supported.
Ms. Andrea Horwath: I think the minister knows very well that it was not an initiative of the government but a force of the courts that created the movement on this particular file, and that is absolutely shameful. The minister knows very well that families continue to mortgage their homes to try to get services. Families continue to go into great debt to try to get services for their children. So the bottom line is, if it wasn’t for the action of the courts, this government would have done nothing. When is this government going to actually deliver on funding to clear the waiting list for those children and the families that need autism services in the province of Ontario ?
Hon. Deborah Matthews: You might want to check your facts on that court decision.
I can tell you that while you have been playing politics with this issue and these families, we have been getting down to work. But we’re not done. We are expanding capacity in this system, and you know it. For example, our new college program to train autism therapists has already graduated 200 new therapists, with 300 more to be enrolled next year. We’ve added three new colleges that are instructing in IBI therapy, autism therapy, including St. Clair in Windsor , Fanshawe College in London and Lambton College in Sarnia , bringing the total to 12 sites delivering this program. Our next step will be delivering IBI services in schools so that children can get the services in their own schools.
Sheila White
Executive Assistant to MPP Andrea Horwath

From a listmate
The Toronto Sun
Susan Sherring's series on autism (Dec. 2-5) has not only shed some light on the lackadaisical efforts of our elected officials, but also shared a human side to what families face daily (and nightly) with their child(ren) who have autism. Parents are profoundly exhausted not only from raising their child(ren) with additional needs, but from being driven to make a difference for others. The current diagnosis rate of autism is one in 94, and boys receive this diagnosis 4:1 over girls. This is an alarming rate and the bells are ringing. School boards clamour to cope with the influx. Workplaces lag behind in offering meaningful employment. Waiting lists grow exponentially for adult services and supported housing -- yet who will care for our children in 25 years? We must all, as a caring society, open our doors to inclusion, our hearts to compassion, our wallets to research, for those who need an extra hand: In the Holiday Spirit -- Inclusion is an attitude, adapt yours.
(There's a lot of work still to be done)

From a listmate
Your Child’s Disorder May Be Yours, Too

Published: December 9, 2007

BY age 2 it was clear that the boy had a sensibility all his own, affectionate and distant at the same time, often more focused on patterns and objects than the people around him.

Robert Spencer for The New York Times

ALL IN THE FAMILY Reports that her son Steve was having problems prompted Susan Shanfield to say, “Our family is like that.”
He was neither naturally social like his mother, nor an early and gifted reader like his father. Quirky, curious, exuberant, he would leap up and dance across the floor after solving a problem or winning a game, duck walking like an N.F.L. receiver posing for a highlight film.
Yet after Phil and Susan Schwarz received a diagnosis for their son, Jeremy, of high functioning autism, they began to think carefully about their own behaviors and histories.
Mr. Schwarz, a software developer in Framingham, Mass., found in his son’s diagnosis a new language to understand his own life. His sensitivities when growing up to loud noises and bright light, his own diffidence through school, his parents’ and grandparents’ special intellectual skills — all echoed through his and Jeremy’s behavior, like some ancient rhythm.
His son’s diagnosis, Mr. Schwarz said, “provided a frame in which a whole bunch of seemingly unrelated aspects of my own life growing up fit together for the first time.”
Researchers have long known that many psychiatric disorders and developmental problems run in families. Children born to parents with bipolar disorder, in which moods cycle between euphoria and depression, run about eight times the normal risk for developing a mood problem. Those born to parents with depression run three times the usual risk. Attention and developmental disorders like autism also have a genetic component.
AS more youngsters than ever receive diagnoses of disorders — the number has tripled since the early 1990s, to more than six million — many parents have come to recognize that their own behavior is symptomatic of those disorders, sometimes in a major, but more commonly, in a minor way. In effect, the diagnosis may spread from the child to other family members, forcing each to confront family frustrations and idiosyncrasies that they might prefer to have left unacknowledged.
“It happens very frequently, with all sorts of disorders, from attention-deficit difficulties to mood problems like bipolar disorder,” said Dr. Gregory Fritz, a child psychiatrist and academic director of Bradley Hospital in Providence, R.I., the largest child-psychiatry hospital in the country. “Sometimes it’s a real surprise, because the child is the first one in the family ever to get a thorough evaluation and history. The parents are there, and they begin to see the pattern.”
But diagnosing an adult through his or her child has its risks, psychiatrists say. In an act of solidarity, parents may exaggerate similarities between their thinking and behavior and their son’s or daughter’s. Families desperate to find a diagnosis for a troubled child are also prone to adopt a vague label — bipolar disorder, say, which is not well understood in young children — and attribute all variety of difficulties to it, when the real source may be elsewhere.
But psychological experts say traces of a disorder in the family tree are very often real, and the stickier issue is what to do once they surface.
Depending on the family, for instance, one parent may not want to shoulder the responsibility for having “passed on” the behavior problem, they say. “The adult may have spent a lifetime compensating for the problem, as well, and is still struggling with it and would rather not be identified that way,” said Dania Jekel, executive director of the Asperger’s Association of New England.
Openness can nonetheless have its benefits, say parents who have chosen to accept their contribution to a child’s diagnosis. Self-examination, for instance, may lead to an appropriate diagnosis for the adult.
Norine Eaton, 51, of Williamsville, N.Y., reared two boys who were diagnosed with attention deficit disorders. “The younger one was literally climbing out second-floor windows, climbing bookcases, onto counters,” she said. “Nothing was safe in the house. It was insanity.”
After the boy and his brother each received a diagnosis of attention deficit disorder, Ms. Eaton sought treatment at the Center for Children and Families at the State University at Buffalo, where she now works. She soon began thinking about her own behavior, past and present. She had long had difficulty focusing on even simple jobs, like paying bills on time and remembering and keeping appointments.
She decided to have one of her sons’ psychologists evaluate her for attention problems. The symptoms of attention deficit disorder, which some scientists now see as a temporary delay in the maturing of the brain, can last through adulthood, but it almost always shows up first in childhood. To make a proper diagnosis, doctors like to see some evidence of a problem in childhood — evidence that can be hard to come by.
“In my case, I went to school here in Buffalo, and I dug through some boxes and found reports going back to elementary school,” Ms. Eaton said. “Sure enough, they said things like, ‘Disorganized,’ and ‘Has trouble paying attention.’”
She now takes a stimulant medication, she said, that helps her focus enough to compensate for the problem, by making calendars, notes to herself, and responding to invitations and messages on time. Once it’s out in the open, knowledge of a parent’s diagnosis or behavioral tendencies can ease strained relations in a family, especially if the previously unappreciated disability contributed to the rupture.
John Halpern, 76, a retired physicist living in Massachusetts, began to review his own life not long after hearing a radio interview with an expert on Asperger’s syndrome. He immediately recognized himself as a textbook case, he said, and decided to call his daughter, whom he hadn’t spoken to in 10 years. He wanted to apologize, he said, “for my inadequacy as both a father and a husband to her mother.”
But as soon as he started explaining, he said, his daughter cut him off. “That’s Asperger’s,” she told him. “She knew,” he said. “She had been looking into it herself, wondering if in fact I had it.”
Mr. Halpern said that over several calls they shared feelings and agreed “to work on our new relationship and see how far we can take it.” The two now talk regularly, at least once a week, he said.
Children made miserable by a psychiatric or developmental disorder may not always want company; but they often long for evidence that they aren’t the only ones putting a burden on the family, some psychiatrists say. Having a parent with the same quirks who can talk about it eases the guilt a child may feel. The child has a fellow traveler, and in some families maybe more.
“When we got reports that our son was not interacting in school, that he was very quiet, slouching, unusual — we said, ‘Well, that’s us; our family is like that,’” said Susan Shanfield, 54, a social worker living in Newton, Mass.
AFTER her son’s difficulties were diagnosed as a learning deficit, a neuro-lingual disorder, she quickly identified some of the same traits in herself. “It was very therapeutic for me,” she said. “I had known I was different from an early age, and now I had a definition that could at least explain some of that. I also told my father, a man now in his 80s, and he was very moved by it.” He has since talked openly about painful memories from growing up, and during his time raising his own family, that were all but off-limits before, she said, and become more tolerant of his own past mistakes and others’.
It can alter the present, too, if parent and child have enough common ground. Mr. Schwarz, the software developer in Framingham, said he became in some ways like a translator for his son, who’s now 16.
“I think there are a lot of parents of kids with these diagnoses who have at least a little bit of the traits their kids have,” Mr. Schwarz said. “But because of the stigma this society places on anything associated with disability, they’re inhibited from embracing that part of themselves and fully leveraging it to help their kids.”

http://www.nytimes. com/2007/ 12/09/fashion/ 09diagnosis. html?_r=1&em&ex=119734&oref=slogin
From a Listmate
Deb Matthews talks about new role as minister
Monday, December 10, 2007 -- Jason Thompson
Deb Matthews says she’s aware of the challenges that oppose her as the new Minister of Children and Youth Services in Ontario, but insists she’s prepared to tackle them head-on.
The Ministry of Children and Youth Services was one of a handful of provincial ministries to have a new minister installed Oct. 30 as Matthews takes over the reins from Mary Anne Chambers.
Matthews was elected MPP of London North Centre and says she was honoured when Premier Dalton McGuinty asked her to be a member of his cabinet.
When a new minister is appointed, a series of briefings are held to bring the minister up to speed on ministry issues. Some of the issues Matthews has started to look at include children’s mental health, youth justice, child care, youth opportunity strategies to prevent crime and children’s treatment centres.
“Overall, I think what we’re trying to do is to create a system that is more focused on the needs of the child and their families as opposed to focused on programs,” Matthews says. “We’re looking for better co-ordination of services for children and more accessibility to services kids need, when they need them and as close to home as they can be.”
Although Matthews has yet to make any major announcements as minister, she says work is ongoing on several fronts.
“We’re really continuing the work that was started by my predecessors,” she says. “We’re looking at a variety of different initiatives. Right now I’m focused on getting myself familiar with the issues that are before us now and determining the priorities within those.”
In addition to her ministerial and constituency duties, Matthews is also the chair of the cabinet committee on poverty reduction, which she says will have a strong focus on child poverty. She also has a lot of volunteer experience with children’s organizations.
“It’s funny how life goes. As it turns out, I’ve had a lot of experiences that have turned out to be really useful in this portfolio,” Matthews says.
Some of this experience includes time served on the board of the Thames Valley Children’s Centre and a co-chair of the centre’s capital campaign in the late 1980s. Matthews was also involved for many years with the Big Sisters program in the London area where she served as president, in addition to working with the Boys and Girls Club.
“The community work I’ve done, as I look back on it, tends to be focused on kids,” she says.
For more information, visit Matthews’ website at

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Flaws in N.B.'s new autism therapy system, say parents
Last Updated: Monday, December 10, 2007 | 9:24 AM AT
CBC News
Some parents of autistic children say their experience over the last 18 months with New Brunswick's latest therapy program has left them longing for a time when they were in charge of finding therapy for their kids and the government just paid the bill.
"It might have had its flaws, but it worked better for him [her son], and he made way more progress," said Cindy Havens, mother of two autistic children.
In Ontario parents have a choice between going to a government-run clinic or managing their own program, Havens said.
"And you know what? If you have the ability of choice, I think it makes a lot more people stand up and be more accountable, as opposed to have a monopoly."
A year and a half ago, the New Brunswick government signed contracts with seven privately run, community-based agencies to provide autism therapy to children five years old and younger.
Havens said she has observed a lot of problems with the new agency system, including a shortage of trained support workers and children not getting their 20 hours of therapy a week.
Another parent, Darryl Nowlan, said his child often doesn't get the full 20 hours of applied behaviour analysis each week.
Parents' meetings with the workers, paperwork, workers being off sick and training all take hours of therapy away each week, Nowlan said.
Some employees do paperwork on their own time so kids don't miss out on their hours, said Danielle Pelletier, program director at Autism Intervention Services in Fredericton. But a lack of clarity in the guidelines on the hours means each agency in the province operates differently, Pelletier said.
"Technically, everything that comes out that is offered to a child needs to be within the 20 hours a week," she said.
But even if the full 20 hours were being offered to a child, studies have shown it's not enough, Pelletier said.
American studies have indicated that with 30 hours a week of therapy, half the kids in therapy will become indistinguishable from non-autistic kids, she said.
"We've been operating for one year and we've come a long way, and I'm very thankful for what we have so far. But certainly we know that the research says that these kids need 30 hours a week of intervention. We get 20. So we know we will not achieve the outcomes that other programs get. Yet the children are still gaining and are still progressing," she said.
Nowlan said he would prefer to see his child get more hours and receive the therapy from a worker trained in applied behaviour analysis.
"Your kid gets into [applied behaviour analysis], they're going to get better," Nowlan said. "Things will get better for you and the child. This is more about trying to make it better than it is."
Only about 50 per cent of the workers at therapy centres have the behavioural training. The government's goal is to make that 100 per cent.
The program had to start somewhere, and the current hours and training levels are what the government could afford, said Family and Community Services Minister Mary Schryer.
Schryer, however, said she is surprised that therapy hours are being lost to meetings and paperwork.
"My understandings is that we have 20 hours of intervention," Schryer said. "We give each agency a set amount of dollars and the majority of that money is earmarked for intervention."
Audits of the new therapy system don't mention the loss of hours, but do refer to the difficulties of maintaining staff levels.
Workers are being lost from the therapy centres to the school system, according to the audits.
"It is difficult to keep staff, for different reasons. For sure, wages is one reason," Pelletier said. "It would be nice if we could pay our employees better, at least the equivalent of what they would get if they were in the school system."
It's difficult when the private sector and the public sector are competing for the same employees, Schryer said.

From a listmate
(We have been asked to share below:)
This message below is being passed from another public board. I share this for two reasons, a) so that those who missed this series can watch it when it is replayed and b) to demonstrate how powerful our community is when we give responses to media.

Please remember to send in your letters of support or concerns when you read, see or hear something in the media about autism. Your feedback, even if unpublished, garners further support and media coverage of the issues surrounding autism.


I received email from TVO regarding a question I had about the recent Autism
special programming that aired in November....

They had such a volume of positive response that they have decided to air
the programs again in january...

The Autism Puzzle will air again on January 6th at 8pm, followed by After
Thomas at 9pm.

End of mailing.