SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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Tuesday, January 21, 2003

>>> NOTE DEADLINE TO PROMOTE YOUR AUTISM MEETING, CONFERENCE: JAN 25 for THE AUTISM CALENDAR FEBRUARY UPDATE:

TREATMENT / RESEARCH

* Third Largest Autism Center in U.S. Opens in Indiana

* Response to 60 Minutes 2/Good Morning America Pieces on Autism/Rapid Prompting

* New Approach to Autism: MIND Institute Sees Parents Essential to a Cure

* Making Their Way: Despite Critics, Autistic Youths Still Typing FC

* Come Together: Parents of Autistic Children Start Their Own School

* Floor Time Article in Current Atlantic Monthly

AWARENESS

* Musical Autistic Savante Stars In Film, Canadian Funding War

* Ohio Advocates Seek Autism Awareness: Sell To Speak Marietta Tues & Weds

PUBLIC HEALTH

* Thimerosal-Free Vaccines May Not Work as Well: UK

* Alarm Bells As Measles Cases Rise in Ireland

TREATMENT / RESEARCH

Third Largest Autism Center in U.S. Opens in Indiana

Riley Hospital Receives $1.86 Million from Federal Appropriations – Secured by Congressman Dan Burton

Indianapolis, IN — On January 23, 2002, Riley Hospital for Children will open the new state-of-the-art Christian Sarkine Autism Treatment Center. The new autism center is the only academic and research program on autism in Indiana, and is the third largest in the United States.

On January 23, at 10 a.m., at a news conference at Riley Hospital for Children, Christopher J. McDougle, Director of the Autism Center, Psychiatry Services and Clinics at Riley, and Chairman of the Department of Psychiatry at Indiana University School of Medicine will be joined by Indiana Congressman Dan Burton, Danielle Burton-Sarkine, Christian Sarkine and Riley Hospital representatives to open and dedicate the Christian Sarkine Autism Treatment Center at Riley Hospital for Children.

The new autism center at Riley Hospital is being named after Christian Sarkine, grandson of Congressman Dan Burton who is being treated for autism. Congressman Dan Burton has long been an advocate for research into the causes and treatments of autism and helped make possible the opening of Riley’s state-of-the-art facility, which will be able to treat more children and bolster Riley’s position as a national leader in autism research.

"I am pleased to have played a part in securing funding for Riley Hospital which will allow doctors and researchers at the hospital to further investigate the causes of autism, and which will allow them to explore improvements in treatment options to help ease the burden on those who suffer from this terrible disorder and the families that care for them," said U.S. Congressman Dan Burton.

At the close of the 106th Congress, Riley Hospital for Children received 1.86 million dollars in federal funding for autism. The Labor-HHS Appropriations bill allocated $1 million, and $860,000 was included in the FY 2001 VA, HUD and Independent Agencies Appropriations bill.

The appropriations will strengthen existing services and augment the fight against autism at Riley Hospital for Children. Riley administrators, doctors and staff are ecstatic about the appropriations. "We are very excited about this funding. It will enable us to continue our efforts in the research and treatment of autism," said Dr. Christopher J. McDougle, Director of the Autism Center, Psychiatry Services and Clinics at Riley, and Chairman of the Department of Psychiatry at Indiana University School of Medicine.

Dr. McDougle continued, "Presently, we are one of only five sites in the country involved in a project funded by the National Institute of Mental Health that is focused entirely on autism. The additional funding will enable our department to make even greater progress in the areas of autism research and treatment. We greatly appreciate Congressman Burton’s efforts and assistance in fighting this disorder."

"We are extremely grateful for the time and effort that Congressman Burton and his aide, Mary Valentino dedicated to securing these funds for Riley," said Kevin Hammeran, Chief Administrative Officer, Riley Hospital for Children. Mr. Hammeran, continued, "These funds will strengthen existing operations and increase our ability to treat children with autism. We will be able to accomplish a great deal thanks to the efforts and compassion of Dan Burton."

The funding has enabled Riley to not only construct a new center, but also expand services, explore immunological aspects and treat more children Currently, Riley Hospital is actively treating over 600 children, making it the third busiest autism treatment center in the country.

The Riley autism center has added a speech and language therapist, an immediate access employee, a social worker, and behavior therapist. These additional staff members allow for more comprehensive and individualized care, providing families with the extra resources such as working with parents and siblings of newly diagnosed patients and providing home and school visits to receive and give feedback of treatment and progress.

Riley has also embarked on research projects into the areas of immunological abnormalities and immune markers in the blood, which have yielded interesting results, especially in lieu of recent studies indicating that there have been dramatic increase into the number of children with autism. These results are set to be published in world renowned medical journals.

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Response to 60 Minutes 2/Good Morning America Pieces on Autism/Rapid Prompting

[An article on the Good Morning America program, "Come Together: Parents of Autistic Children", is reprinted further below in today's SAR.

>From Elizabeth Kilpatrick at Cure Autism Now.]

Many families and autism professionals have written asking about Tito, his mother Soma, our son Dov, and the new teaching method Soma has pioneered. This method is called the Rapid Prompting Method (RPM). We are working with Soma to produce a teaching manual for parents, teachers and professionals, which describes step-by-step how to implement this teaching method. This is not a cure for autism. That will require much more medical research, and we are working hard on that front every day. This is a teaching method that has met with some early success. And we very much agree with the basic assumption, that how an autistic person acts on the outside is not necessarily a reflection of who they are and how they think on the inside. We would rather assume competence.

We appreciate your interest in CAN and in the Rapid Prompting Method. The study of this method is part of CAN’s larger Neuroplasticity Initiative and which is being led by Dr. Michael Merzenich from the University of California at San Francisco. Dr. Merzenich is an international authority in the field of neuroplasticity and has pioneered important technology to help people with dyslexia and developed Fast For Word.

The most exciting news in neuroscience in the last five years is the idea of neuroplasticity – the concept that the brain continues to grow and change throughout life. There have been amazing breakthroughs in the treatment of stroke and dyslexia through neural retraining. Using specialized education techniques, the brain is able to rewire around damaged or undeveloped areas and re-regulate the way it deals with sensory input.

CAN’s Neuroplasticity Initiative would compile an integrated team of scientific leaders to focus on bringing these techniques to bear on autism to find ways to retrain the brains of people with autism – from the very young, to adults and even to those most affected who in many instances are not able to speak at all.

As parents we understand the sense of urgency that many of you feel in getting this method to your own child. Soma is working hard on getting a first draft of the RPM manual written, and we hope to have a beta test version of it available on the CAN website by June 1, 2003. People will be able to try it out and give feedback before the manual is published.

As we search for effective biological treatments and a cure for autism, CAN is also always looking for ideas that can make an impact for people with autism today. Our goal is to bring the cutting edge of technology to bear upon the communication problems with autism. This initiative is actively creating a new hybrid field, bringing together the wizards of technology and neuroscience along with experts on autism, therapists and people with autism themselves.

We are very grateful to the scientists who have been working with Tito and Soma, studying the RPM method and to our donors, the Cure Autism Now Board and the many parents and professionals like you who have supported CAN and made it possible for Tito and Soma to bring this new teaching method to the U.S.

Best Wishes,

Portia Iversen and Jon Shestack.

Answers to some questions you may have after seeing the 60 Minutes 2 or Good Morning America episode:

Q: Where can I order a tape of the 60 Minutes 2 episode?

and click on 60 Minutes 2.

Q: Can Soma and Tito travel to our location and give a presentation to our group?

A: We will give Soma your request. It is difficult for Tito to fly and therefore he travels infrequently. We are helping Soma create a video of Tito and some the children she has taught, so that she may give presentations herself. She will respond to your request as soon as possible.

Q: How can we learn more about this method? Is there an instruction manual?

A: A manual is being written and the beta test version will be available on the CAN website June 1, 2003 for testing and feedback before publication.

Q: Can this method be taught to teachers and used in classrooms?

A: Yes

Q: Are there other schools using this method?

A: Not yet.

Q: Do you think this could work for other autistic children?

A: It is probable that many could learn to communicate better with this method.

Q: Can Soma work with my child?

A: Not at this time, but the manual will help you get started.

Q: Are there any workshops available?

A: Not yet, but there will be in the future.

Q: What kind of letter board does Soma use?

A: She uses either an ABC or QWERTY (keyboard) configuration, depending on whether the child knows the alphabet or not. The letters are typed or written on a piece of paper or cardboard. Eventually she trains the child to work on a portable keyboard such as the Alphasmart.

Q: My child can talk – could this method still help him?

A: There are many people with autism who are verbal, but tend to use language more as a “stim” than for communication. Soma is testing the method with verbal children whose speech is of limited use for communication. More will be known about this in the next year.

Q: What research is being conducted on Soma’s method?

A: CAN is supporting several studies which address many different aspects of this teaching method and the implications it has for understanding autism.

Q: What type of research does CAN fund?

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A New Approach to Autism: MIND Institute Sees Parents as Essential to a Cure

Autism is a disease that often drives people apart. It separates children from parents, it isolates families from their friends. And it's left a chasm between parents of autistic children and mainstream medical science. Many parents feel betrayed by scientists who once blamed the disorder on bad parenting. And they feel abandoned by doctors who offer no cure and little hope.

A new autism research center in California, founded by fathers of autistic sons, is trying to bridge this chasm. As NPR's Jon Hamilton reports, its goal is to cure autism by changing the way scientific research is done.

When the University of California, Davis, MIND Institute opens its doors in April 2003, it will be the nation's largest autism-related treatment and research center under one roof.

Project manager Chuck Gardner is supervising the construction. For him, this job is personal. He's the father of a 10-year-old autistic son, Chas, and is one of the founders of the MIND Institute.

Since Chas was two, Gardner has dreamed of a sort of Manhattan Project for autism. He wanted to create a center that would cure the disorder -- quickly. And he wanted parents to be involved in running it. Gardner started by presenting his ideas to a roomful of scientists at U.C. Davis.

“They really weren't buying into this vision that I was trying to put out there,” Gardner says. The scientists told him he needed funding -- at least $5 million -- to make it happen. “I don't know if they told me that to make me go away, but I can tell you as the parent of a kid with autism, I wasn't discouraged at all. In fact I was encouraged because I knew that $5 million would not stand between me and getting to know my son for the first time ever.”

As it turned out, money wasn't an obstacle. In the five years since that meeting, the project has raised about $50 million. The institute began operating out of temporary quarters in 1998.

Chuck Gardner worked with a team of fathers of autistic sons to make the center a reality. Autism is largely a disorder of sons: About 80 percent of affected children are boys.

Institute co-founder Rick Rollens, former secretary of the California Senate, became a lobbyist for autism after his son Russell was diagnosed with the disease. Like many parents -- but few doctors -- Rollens blames vaccinations for his son's disorder.

"He was never the same after those shots,” says Rollens. “His development slowed down… then he developed the chronic gastro problems and that was the final straw in his tolerance for these immunizations. And he had gone completely into the world of autism at that time."

Parental Supervision Required

What makes this research center different from other mainstream academic centers is, in part, its emphasis on parents. Gardner discovered that some autism researchers had never met someone with autism, so the founders came up with strategies that put parents, kids and researchers together. For instance, the center has a playground in an outdoor courtyard that serves as both a waiting room and an exam and observation room. Parents also sit on the board and take part in key committees.

Parents have insisted on this unusually close collaboration with the research team partly because they help bring in the funding, and because the conventional scientific approach has made little progress. Rollens says they knew that just pouring money into traditional autism research wouldn't get them very far.

"If we were going to wait for mainstream medicine to get around to finding a cure for our kids we would all be old and gray and our kids would outlive us in their condition,” he says. “And as a parent of a child with autism, you worry about that every moment of your waking day."

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Making Their Way: Despite Critics, Autistic Youths Still Typing FC

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Autism is like a heavy curtain between its sufferers and the outside world, and when facilitated communication was introduced, it seemed like the curtain had lifted and autistic people were at last able to reveal themselves.

Facilitated communication is an attempt to help autistic children speak by using a "facilitator" to steady their hand as they type words and sentences into a keyboard, expressing their thoughts. The facilitator — or whomever is standing there — is able to read it aloud. It was 11 years ago when facilitated communication first started making waves in the autistic community.

When ABCNEWS' Diane Sawyer interviewed three teenagers about it back in 1991, they told her that facilitated communication had changed their lives. One 16-year-old autistic boy, Jeff, seemed overjoyed at being able to communicate.

"Yes, it has changed my life because now I can let people know that I am intelligent and I am good with words and I care about people," Jeff's facilitator said, reading what the teen had typed into the keyboard. "I love them."

But several leading experts in the field said they tested facilitated communication scientifically and found conclusively that it didn't work — at all — and that well meaning facilitators were unconsciously guiding fingers toward the keys. Still, the families of the three teens that ABCNEWS met, Lucy Harrison, Ben Lehr and Jeff Powell, say they have continued to use facilitated communication and when Good Morning America visited them again recently, each said it was still changing their lives.

'We Didn't Know She Was There'

Lucy Harrison, who was 15 at the time of the first interview, talked about autism when ABCNEWS first met her.

"I wish I was not autistic," Lucy Harrison said through facilitated communication. "I wish I could do all the things other kids do."

Nita Harrison, Lucy's mother, said her daughter's communication astounded the family.

"As she says, 'I am like everyone else inside my body,'" Nita Harrison said."And she is in there, two feet away from us, and we didn't know she was there."

Lucy Harrison is now 26, and her facilitators touch only her shoulder as she types into the keyboard. She speaks as she types — though not always clearly — and is an incredibly fast typist. Observing her, it seems impossible that her words are not her own as she writes about facilitated communication, which she calls FC.

"And a good way to be in the world was a way to have the FC for the people who need understanding," she typed. "The person who's autism, the person will be the one who needs to be the....quickly the world will pass the person with the lack of the communication."

" (Communi) 'cation, yes," she says aloud as she typed.

Lucy is nearly finished with college, taking classes with the help of facilitated communication, and is thinking about getting a job when she's through, possibly at Pizza Hut, she says.

A Poet of Winter

Jeff Powell was 16 when ABCNEWS first met him, and through facilitation he explained that his body makes involuntary movements that he can't control "Yes, it does what it wants to," Powell's facilitator said, reading the words typed out by Powell. "Sometimes I can't help what it does."

Powell, an ace student and inspired poet, audited a couple college courses after high school, but then stopped going to school. His practice of typing without looking — shared by many people with autism — is something even supporters say seems impossible.

He still writes poetry with facilitated communication: "Caving in the snow, my feet feeling cold, snowbound, not easily defrosted, testing the icy jingles of fresh freezing snow … "

Ben Lehr, another teen, was full of personality when ABCNEWS met him in 1991. He declared himself a Democrat and typed out that Anita Hill was telling the truth.

Lehr, now 29, finished college and surprised his parents, by telling them, they say, through facilitated communication, that he wanted to get a roommate and move out on his own. He did just that, and today, with his sister's help, he builds furniture that is sold in local stores.

The three teens who first told their stories a decade ago are each in their way —making their own way in the world.

"It was a dream of the … getting the cure, the cure of the autism, autism," Lucy Harrison said.

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Come Together: Parents of Autistic Children Start Their Own School When two sets of parents realized there were no effective programs in their area for autistic children, they created a school of their own.

(ABCNEWS.com)

_school.html

The long journey began with 2-year-old Paul Kotler's devastating diagnosis — autism — a little-understood disorder whose victims live in a world of isolation, unable to communicate or control their body movements.

Before long, Paul's parents realized that they didn't have a way to help him within their community, or even in their state.

"We wanted a full-time speech and language program, but none existed in Pennsylvania," his mother, Melinda Kotler said.

Later, they had a stroke of luck. In the fall of 2001, Kotler met Michael Dinda at a meeting for parents of children with autism, and they had a conversation that would change their lives. Together, they founded the Magnolia Speech School Demonstration Program, which opened in Berwyn, Pa., four months ago.

The school's philosophy is that the only truly appropriate program for severely language-disordered children is one that immerses them in language, full-time. The founders say that the communication helps them break through the children's isolation and catch sight of the spark that is inside of them.

The Part That Breaks Your Heart Before she met Dinda, Melinda Kotler and her husband worked hard on a specialized program in their home, but slowly realized that while Paul was learning, he was not learning to speak. When he turned 6, his parents resolved to find a school that could teach him, and the location didn't matter.

"I went out and did the one-week trial placement, and he was accepted, and that was wonderful," Melinda Kotler said. "But it was very scary to think that we were going to split up the family."

Melinda and Paul Kotler moved across the country to San Francisco. At about the same time, the Dinda family learned that their son, John, had autism.

"To this day I can remember like the out-of-my-body, walking, watching me, John in his little toddler shoes and his blue and white jumpsuit, hand in hand between his mother and father walking down the hall," Michael Dinda said. "And, you know, at that moment that your life is irrevocably changed.

The part that breaks your heart is you know that your son's going to have to work harder than anybody else."

First, the Dindas tried intensive home-schooling, and later they made a disastrous attempt at regular first grade. Finally Michael Dinda, a senior vice president at Fleet Bank, took a pay cut so he could focus on his son. If he couldn't find a solution out there, he would create one himself.

"John was coming home frustrated, he was regressing," Dinda recalled. "And I said, 'This is nobody's fault, Maude, but we're going to have to build a school.'" Meanwhile, the Kotlers were also at a crossroads.

"At the end of that fifth year, we decided we just could not live apart as a family anymore," Melinda Kotler said. "And I knew that Paul was far enough along in the program that if I brought him back to Pennsylvania with the idea of starting a school that I could maintain his skills at home while we were starting the school."

A Life-Changing Conversation Kotler and Dinda met in the fall of 2001 at a meeting for parents of kids with autism, and had a conversation that would change their lives.

She had a curriculum, and he had a knack for raising money and a Rolodex full of wealthy clients. In eight short months, they raised a remarkable $250,000, recruited a highly trained staff, and on Sept. 3, 2002, opened their doors to a class of seven severely language-disordered children, most of them autistic.

"I was elated. I got there, and I looked around, and I thought, 'Oh my gosh, I finally have my school and I can make sure that these kids have everything they need,'" Kotler recalled.

The need extends far beyond the Philadelphia suburb where the school was founded. In fact, parents across the country have had to do the same

thing: create schools for autistic children. But only the Magnolia School has a full-time curriculum teaching spoken language through the Association Method, sound by sound.

The Association Method is phonics-based, and was developed by the late Mildred McGinnis at the Central Institute for the Deaf in St. Louis over 50 years ago.

Comfortable in their Own Skin In addition to language, the school employs something called Sensory Integration Occupational Therapy, which involves buzzing and brushing the skin's surface to interact, and applying deep pressure to calm students down.

The stimulation helps the children feel literally more comfortable in their own skin. The students also participate in "floor time," careful responsive play that teaches the children something that they don't know

automatically: how to relate socially with other people.

"If the people that saw him in school last year could see him the way you guys saw him today, it's night and day," Maude Dinda said. "He's a different child. He's entirely different."

Her husband says that his son's hard work inspires him.

"You know that he's working right along with you and that you owe it to him every step of the way to support him," Michael Dinda added.

Kotler feels the same sense of dedication to her son.

"I owe that to him because he's a wonderful, delightful, loving person, and he just shouldn't have to live that way," Kotler said.

If there's a problem at the school, it is satisfying for her to be able to address it with a staff member who has the expertise, or to go out and find the expertise. The children are thriving, she said.

"Every time we see a spark that he's in there, and he wants to relate, and he wants to be a part of this family, it just makes you hungry for more," Maude Dinda said. "I think when you have children, you know, as soon as you hold them in the hospital, that you would go to the ends of the earth and back again for them if you had to, and with John we've had to. It's just as simple as that."

This is part two of a three-part Good Morning America series, "Autism: Unlocking the Mystery," reported by ABCNEWS' Dr. Tim Johnson and produced by Ami Schmitz, Morgan Zalkin and Anna Robertson. Online Q & A In the fall of 2001, Melinda Kotler met Michael Dinda, at a meeting for parents of children with autism, and they had a conversation that would change their lives. Together, they founded the Magnolia Speech School Demonstration Program, which opened in Berwyn, PA, on September 3, 2002.

The concept behind the school is that the only truly appropriate program for severely language-disordered children is one that immerses them in a full-time only instruction program that is language-based and therapeutic.

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Floor Time Article in Current Atlantic Monthly

A new approach to the treatment of autism, one that emphasizes emotional development through intensive one-on-one engagement with autistic children, appears to offer some hope in responding to a disorder that is both epidemic and frequently intractable. Patricia Stacey, the mother of an autistic boy born in 1996, tells the story of her search for an effective therapy for her son.

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AWARENESS

Musical Autistic Savante Stars In Film, Canadian Funding War

-B7F8D2DAC4A4%7D <- - address ends here.

Linda Cucek knows all about tough. She was a U.S. Marine.

But today, the Coquitlam mom admits nothing could have properly prepared her for the challenge of raising an autistic son.

"I tell you, it was way harder than being a Marine," Cucek says. "I mean it."

Cucek's battles aren't over. Although her son James is 19, Cucek continues to fight for support for families with autistic children.

The Human Rights Commission plans to hold a hearing in March on the B.C. government's funding policy for autism. Cucek will be there.

For those whose only exposure to autism is the Dustin Hoffman film Rain Man, it's worth noting that, in typical Hollywood fashion, it smoothed over many of autism's jagged edges.

The dream merchants are returning to the subject to put a B.C. man -- Cucek's son -- in the movie spotlight.

Last week, the family signed a deal for a documentary film of James' life. Linda Cucek said two directors, one from Toronto and another from the U.S., will start filming here at the end of January. The release date hasn't been determined.

James can play the piano brilliantly, as well as the accordion and harmonica. He composes his own songs, although he's never had a music lesson.

"I want to be an electronics engineer," James says from his favourite piano stool at Tom Lee Music in Coquitlam.

"Yesterday you wanted to be like [the late, legendary Canadian pianist] Glen Gould," his mother notes.

"That, too," laughs James.

That's the good side of the disease.

The bad side, for many of B.C.'s 7,500 families with an autistic member, can often be a kind of expensive, exhaustive nightmare.

"I love James very much," Cucek says. "But James has behaviour problems."

Medical dictionaries describe autism as a self-centred mental state from which reality tends to be excluded.

Its cause remains unknown.

What is known are the intense financial and emotional strains it causes. Family bills can exceed $65,000 a year for behaviour-altering drugs and institutionalization.

"There is now government funding of $20,000 a year for up to age 6.99," says Michael Lewis of Autism B.C., "which is a start. But in the meantime, there's nothing for children seven or older."

To that, Health Ministry spokeswoman Linda Mueller replies: "The emphasis on autism treatment is on early diagnosis and intervention."

Lewis shoots back: "You wouldn't stop cancer treatment at the age of seven."

Victoria's autism policy has also been debated by the province's two highest courts, which ruled that B.C. must provide better treatment for children four and under.

B.C. has asked the Supreme Court of Canada to hear the case.

The Attorney-General's office says that autistic children unquestionably merit treatment, but argues that the courts should not control health policy by dictating levels and type of care.

The best autism treatment is called intensive early behaviour therapy, with the much-studied Lovaas method considered the "gold standard."

One influential U.S autism group says B.C.'s preference for a cheaper, multi-methodology treatment hurts patients.

"A multi-methodology approach is less than ideal," says Ronald Leaf, co-director of Autism Partnership.

He says Lovaas "has repeatedly been shown to be effective in reducing disruptive behaviours . . . teaching complex communication, social and vocational skills."

And Lewis concludes that if a person's well-being isn't enough for B.C., "cost/benefit analyses have over and over demonstrated that you pay now in treatment and save later on [patient] institutionalization costs."

© Copyright 2003 The Province

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Ohio Advocates Seek Autism Awareness: Sell To Speak at Marietta Tues & Weds

Just four decades ago autism was blamed on poor parenting or "cold" mothers.

Today we know better, but still don't know much.

"He just disappeared on us," Sandra Kolankiewicz said of her 3- year-old son, diagnosed with autism. "At first, we thought he was deaf and had him tested."

Since 1988, one of every 250 young children have been diagnosed, like the Kolankiewicz child, with some form of autism. Prior to 1988, autism was considered a "rare" disorder with an incidence of only 1 in 2000 children.

It is being called an epidemic.

"A Community Conversation" about the curious rise in autism since 1988, and possible causes, including any connection with the chemical thimerosal, is 7 p.m. Tuesday and Wednesday at McDonough Center, Marietta College.

Thimerosal, a mercury-based additive, no longer used in infant vaccines, was used as a preservative in multiple dose vaccines from 1988 to 2001. Only children born between those years are suspect.

Thimerosal is no longer used in any childhood vaccine.

The meeting is open to the community, particularly to parents who have questions and concerns about autism, professionals in education and medicine, and health care providers.

Jeff Sell, vice president of the Autism Society of America and chairman of the organization's government relations committee speaks at 7 p.m. Tuesday, sharing the story of his twin sons' autism. He will also discuss the possible connection many suspect exists between autism and thimerosal.

Attorney James Ferrell will speak about the status of litigation against pharmaceuticals regarding thimerosal and Ginger O'Connor, speech pathologist with the Washington County Board for Developmental Disabilities, will offer information about autism incidence locally and nationally.

Autism is a neurological disorder, characterized by impairments in language, and cognitive and social development.

"He was bright, wonderful, totally there, happy and bright," this mother said. "Then suddenly, he was a zombie."

Kolankiewicz fears thimerosal could have played a role in her son's disorder.

Medical science and experts are searching for answers, while parents agonize and struggle to care, day-to-day, for the children they love, but who often treat them as strangers.

O'Connor said Friday she also is deeply concerned about the high incidence of autism, but stops short of naming thimerosal as the source.

"There are many possible causes. This is only one possibility," O'Connor said. "We need to be careful not to put it all on thimerosal without further study. What's most important is that families feel free to come to the conference, where they can learn where to go for help and information. We will have staff from Ewing School there to answer questions and help."

A panel discussion is at 7 p.m. Wednesday, also at McDonough Center auditorium. Panel members are Ron Rees, Washington County Mental Health and Addiction Recovery Board; O'Connor; Sell; Bridget Stephen, student services coordinator with Marietta City Schools; and a representative from Congressman Ted Strickland's office.

Kolankiewicz, director of experiential education at Marietta College, organized the conference.

"I was educated. I knew there was something wrong," she said of her very personal and unexpected battle with autism. "I had a child 18 months before and had something to compare."

Senior students in the McDonough Leadership Program hope to develop a comprehensive plan to address autism issues that can serve as a model for the nation.

"Right now, there is no plan," Kolankiewicz said. "This is a wonderful exercise for our students and Marietta ought to be the first community in the nation to write a plan."

If you go

What: "A Community Conversation" about autism.

Where: McDonough Center, Marietta College.

When: 7 p.m. Tuesday and 7 p.m. Wednesday.

Who: Open to the community, no charge. Parents with children diagnosed with autism or with questions and concerns are urged to attend.

For more information: Sandra Kolankiewicz, director of experiential education, 376-4559 or 373-3266.

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PUBLIC HEALTH

Thimerosal-Free Vaccines May Not Work as Well: UK

Britain's Department of Health on Tuesday backed continued use of thimerosal-containing vaccines, saying there was no evidence they harmed children and warning that alternative vaccines without the mercury-based preservative were less effective.

In a statement following calls for older diptheria-tetanus-pertussis

(DTP) vaccines to be withdrawn amid fears of autism, the department said recent reviews by the UK Committee on the Safety of Medicines and the US Institute of Medicine had found no evidence that low doses of thimerosal had any effect on childhood development.

"Until an equally effective non-thimerosal-containing DTP vaccine is licensed here, the advice from the Joint Committee on Vaccination and Immunisation is that wholecell DTP--which contains thimerosal--should continue to be used."

Thimerosal has been used for over 60 years to prevent microbial contamination or as an inactivating agent to produce killed vaccines, but parents and some scientists are worried that its use may account at least in part for the rise in reported cases of autism.

Last Friday, it was announced in the US Senate that a provision blocking US lawsuits by families who blame their children's autism on thimerosal would be repealed, paving the way for litigation against manufacturers such as Eli Lilly and Co. who deny liability.

The American development appears to have prompted renewed calls in Britain for a ban on all mercury-containing medicines by pressure groups such as Action Against Autism, who have warned that if the authorities were aware that the old vaccines posed a danger to public health, they could be charged with criminal medical negligence.

In its response, the department said it had been advised by the CSM that there was "no evidence of harm caused by doses of thimerosal in vaccines, except for hypersensitivity reactions."

The statement added: "The view of the (UK) Joint Committee on Vaccination and Immunisation (JCVI) is that the currently available UK licensed DTaP vaccines (which don't contain thimerosal) do not offer the overall protection that DTwP (containing thimerosal) does and thus, having seen all the evidence, JCVI has not recommended as yet a move to routine use of DTaP."

The department noted that vaccine manufacturers were developing research programs to replace or reduce the level of thimerosal used in vaccines in accordance with European guidelines, but said this "may take time because manufacturers are required to ensure that the replacement or elimination of thimerosal does not affect the safety or efficacy of the final vaccine."

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Alarm Bells As Measles Cases Rise in Ireland

The country is on the brink of another measles epidemic, a public health specialist has warned. During the first week of January, 15 new cases of measles were reported to the National Disease Surveillance Centre (NDSC). In the same week last year, just one case was reported.

The significant rise has set off alarm bells in the NDSC because fears about a possible link between autism and the triple Measles, Mumps and Rubella jab have led to many parents refusing to let their children have the vaccine. Dr Joan O'Donnell, a specialist in public health medicine at the NDSC, said the reports suggested there was a real risk of a measles epidemic.

"Since the end of November, the number of cases have increased dramatically because the MMR uptake is so low," Dr O'Donnell said.

Since November, 63 new cases were reported, far more than the NDSC had expected. There were 245 cases reported during 2002, compared with 241 the previous year. However, judging by early indications, the number is set to grow significantly this year.

The national uptake of the MMR vaccine at 72% is up 2% on 2001 but is still well below the target of 95%. None of the eight health boards managed to reach that target. Measles vaccine was introduced in 1985 and continued as part of the triple MMR vaccine in 1988.

In 2000, 1,603 cases occurred in Ireland, mostly in the eastern region. Three children died, two of pneumonia complicating measles and another from a post-measles encephalitis.

Meanwhile, amid a series of conflicting reports on the effectiveness of the MMR vaccine, a major survey has found that parents' ignorance about the consequences of not giving their children the MMR jab could put unborn children at risk from rubella.

The deaf-blind charity Sense in Britain said people were not sufficiently aware of the dangers of rubella, or German measles, to pregnant women. Sense has warned at children not protected against rubella were at greater risk of catching and passing it on to pregnant women who do not have immunity. If a woman catches rubella during the early stages of pregnancy her child could be born with congenital rubella syndrome which can cause deafness, blindness and damage to the heart, brain and nervous system.

However, a MORI poll commissioned by Sense revealed 27% of adults questioned could not name any of the effects of rubella on an unborn child.

The figure was particularly high among people aged 15-34 with 39% unaware of the dangers

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Lenny Schafer, schafer@sprynet.com Kay Stammers Edward Decelie

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