Wednesday, September 19, 2007

autism

Oprah Winfrey has made history again. This time it was a show on autism. Not just another show but one that every parent who has a child with autism can use as a guide.

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Hopefully some philanthropist -- perhaps Oprah, herself -- will have millions of copies made and hand them out like samples for physicians to pass on to their patients. Kind of like pharmaceuticals, although the only side effect would be outrage at what has happened to so many children harmed as a result of the current autism epidemic.

Sixteen years ago I left a neurologist's office after my son was given this baffling diagnosis of world class proportions. I left in tears but without any hope or useful advice. Boy, could I have used a copy of today's show back then. True, they didn't know in those days what they know now. But it has been a long time coming. And even today not every parent gets told the whole story.

Oprah, start making those copies. Please!

There were no scientists, social scientists or medical "experts" on Winfrey's latest and most courageous autism show on Tuesday. Just two mothers. Okay, they were not just any mothers. They were Jenny McCarthy, the actress, author and renowned beauty and Holly Robinson Peete, who had the remarkable good sense years ago to marry the football star Rodney Peete. But autism is, sadly, a great equalizer. The first thing any mother hears when presented with the diagnosis is that her child will be unable to communicate and hence live a life of isolation without choice.

But there are choices. And there are plans of action. And there are ways to celebrate so much that is wonderful about kids with autism, while helping them deal with the symptoms that are not-so-great. McCarthy and Peete made that crystal clear today. They also drove home the point that "something happened" to create this epidemic of one in 150, emphasizing that the vaccination connection must be investigated further -- and properly. Too many parents have noticed that their children regressed into autism after being vaccinated -- and we do know that toxic mercury has been used as a preservative in vaccinations for years. We also know that the number of prescribed childhood vaccinations has multiplied substantially. Meanwhile medical authorities have dismissed and shamed parents who bring this up.

McCarthy noted that she is not against vaccinations but that when it comes to medicine "one size does not fit all."

"My science is Evan," McCarthy said about her son. (He has improved significantly from bio-medical measures often pooh-poohed by the medical establishment.) "He's at home."

The two women added that although not every kid with autism will be cured, it's more than worth trying. And every kid with autism can be educated.

It was stunning to hear Holly Peete say about her son; "We were kicked out of a school because they said he was unteachable."

If her kid can get kicked out, whose kid is safe?

And so, the women urged other parents to "beat down doors," and be as vigilant as possible in demanding an appropriate education for children with autism. In other words -- mine -- give your school districts a chance but remember that every day lost is a day without education. If necessary, storm the barricades.

Peete spoke about her marriage succeeding under these most difficult of circumstances. McCarthy spoke about hers failing -- and about the way Jim Carrey has apparently become a great autism "dad," to her son, albeit not a biological one. The actress added that the best gift anyone can give a financially stressed couple, or a single parent, dealing with autism is free babysitting, preferably overnight. (Memo to autism parents: When you get that free babysitter, go to the next Jim Carrey movie.)

My only endnote is that none of this would have happened so spectacularly on television if it wasn't for a woman named Katie Wright. Months ago, on an earlier and generally far less gutsy Oprah program, Katie Wright stood up to a pediatrician in the audience and told her that when it comes to autism it was time to start listening to parents. And that started the television balls rolling.

If you don't know who Katie Wright is, please look her up. And look up all the parents who came before her, too.

SACRAMENTO - Government agencies are facing a new public health crisis - a dramatic increase in autistic children - and must swiftly explore how best to provide better care and protection for them over their lifetimes, a blue-ribbon state commission concluded Tuesday.

The California Legislative Blue Ribbon Commission on Autism said its overall findings included a lack of screening for the disorder, poor public awareness generally, barriers to seeking care for the afflicted, and overlapping efforts between the public and private sectors that need to be better coordinated.

"Throughout the state," the report says, "there is an intense need to plan for and address the impending housing, transportation, employment and educational needs of the tsunami of young people with" autism.

The panel's report recommended the state adopt legislation next year to immediately address such problems.

The panel also concluded that urgent efforts should be made to better educate police and judges so they don't accidentally abuse those with the disorder, which can be characterized by seemingly aggressive behavior.

Senate leader Don Perata, an Oakland Democrat, who authored a bill two years ago forming the 16-member panel, said the report will allow lawmakers "an opportunity to link the science, knowledge and best practices regarding autism to public policy."

The commission's recommendations included:

? Bolstering early identification and intervention.

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----------------------------------------Six autism related bills sponsored by state Sen. Ellen Karcher (D-Monmouth and Mercer) were signed into law by Gov. Jon Corzine last week.

"A diagnosis of autism or developmental disability presents real challenges for parents and caregivers," Karcher said. "While the medical community seeks to find answers to the causes of autism and developmental disability, states have an obligation to promote programs which help those living with the disability. These new lifesaving laws will help families deal with the hardships of caring for individuals with autism."

According to a press release, Corzine signed into law the following bills:

? S-2258 incorporates autism and other developmental disability awareness and teaching strategies into both coursework for New Jersey instructional certificate programs as well as professional development programs.

? S-2568 requires the Early Intervention Program in the Department of Health and Senior Services to undertake several initiatives to address the specific needs of children with autism spectrum disorders and their families.

? S-2291 establishes the Asperger's Syndrome Pilot Initiative in the Department of Human Services which would provide vocational, educational and social training services to persons with Asperger's syndrome, through communitybased service sites.

? S-2559 establishes a 13-member New Jersey Adults with Autism Task Force in the Department of Human Services to study, evaluate and develop recommendations relating to specific actionable measures to support and meet the needs of adults with autism, including job training and placement, housing, and long-term care.

? S-2569 provides for continued funding for autism medical research and treatment in New Jersey by eliminating the five-year "sunset" for the $1 surcharge for each motor vehicle fine and penalty imposeAutism is a subject close to the heart of Nancy Morrison, New Democratic candidate in York - Simcoe in the upcoming provincial elections.

So she and her supporters were happy to welcome NDP Leader Howard Hampton to the riding Saturday to announce the party's Ontario Autism Strategy.

The NDP promises to put children and families first by providing publicly funded Intensive Behavioural Intervention (IBI) services in classrooms for all children with autism, and clear the waiting list for autism services.

"Every child who needs IBI autism therapy should have access to it," Hampton said. "That's the only fair thing to do. It's a practical, doable and sensible thing we can do that will make an immediate difference to the day-to-day lives of today's families."

They were joined by Elisa French and her son Tyler, 11. The French family live in Innisfil and have had numerous community fundraisers to pay for some IBI therapy for Tyler, who has waited eight years to receive any funding.

Also attending the announcement was Mary Turner, a Bradford parent of three children with autism.

Turner said that in 2003, she voted for Liberal Leader Dalton McGuinty based on promises he had given (to fund IBI treatment) in a letter to Morrison, only to watch her 10-year-old daughter Katie go for four years without IBI treatment. Turner said she believes Katie's development slowed down as a result, and it breaks her heart to think about how beneficial the therapy would've been for Katie. "I think it's lost time."

The children who attended Saturday's event were all school aged. They have to be removed from the classroom for their IBI sessions, because their therapists are currently not allowed in the classroom. Hampton said he will place the IBI therapists in the classroom.

He also promised the NDP will commit $100 million to ensure the wait list is cleared, and every child who receives a diagnosis will receive IBI treatment immediately. Funds will also be allocated to respite services and research.

Asked how the NDP would pay for its proposed annual investment, Hampton said "the money was there, in this past budget year, to do this."

He referred to other Liberal money controversies such as a "secret $32.5 million slush fund", $59 million originally slated for autism services until the Liberals "quietly slid it out of the budget and spent it somewhere else." and $2.4 million spent fighting families like the Morrisons' in court.

"Families face financial ruin trying to provide for their children with autism," Morrison declared. "Families are re-mortgaging or loosing their homes and life savings to provide for their children while languishing on waiting lists. Nobody in this province should have to live like that."

That came a couple of days after Morrison gained wide media attention at an event in Richmond Hill, which Hampton attended as well.

Morrison said she has full confidence in Hampton and the party. "I have been in discussion with him about what we will be doing," she commented.

by the court.

? S-698 expands and revises the membership of the Governor's Council for Medical Research and Treatment of Infantile Autism and revises the name of the act and the council to delete the reference to "infantile."

"Until we can offer a cure, New Jersey must offer a helping hand to families and individuals living with autism and developmental disability," Karcher said.
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? Working toward better education of those with the disorder, through the college years.
? Establishing regulations to ensure appropriate and equitable health insurance.

? Creating a statewide public awareness campaign.

The disorder has increased more than 600 percent in recent years, now affecting about one in every 150 children. It is the fastest growing serious developmental disability in the United States.

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