Sunday, December 16, 2007

Autism News Articles Dec 7-15th 2007

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Autism News Articles
December 7TH 2007- December 15th 2007
10 days till Christmas!
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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

Google alert
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.

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