Schafer Autism Report June 12, 2003

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There’s a bike rodeo, field day, a trip to the zoo, an art project about panthers and lots of time on the playground.

Camp Sunrise in North Naples might sound like your average day camp, but it’s a special camp for special children aimed at teaching them through fun experiences.

The two-week Camp Sunrise is made possible solely by donations from the John Maxwell Biasco Foundation for Children with Autism and from local businesses and the public.

For the 53 children ages 4-15 it’s just a lot of fun and games. For their parents it’s a short break and a chance for their children to learn social and motor skills in a non-academic setting.

For example, before the bike rodeo a speech therapist goes over bicycle terms with the youngsters. The rodeo itself will help campers with their motor skills.

Field Day will teach campers about working together as well as again help with motor skills.

Panther day was aimed at teaching campers social skills. Students from FGCU’s Wings of Hope Program led by Ricky Pires do a panther program for fourth-graders throughout Southwest Florida.

This was the first time they did the event for children with autism. Pires said she had to revamp the program to steer away from lots of facts and more toward visual lessons. Youngsters spent the morning making panther masks and learning a little bit about the endangered species.

“Oooh look how big,” said Claudia Gorz, 12, as she was shown a picture of a male panther. “Oh look spots,” she added with enthusiasm as she held a stuffed baby panther kitten.

“They are very visual learners, and there’s a lot of visual to this,” Allen said.

“It gives them the opportunity to be exposed to new people and new activities. We don’t pull the kids out for therapy. We integrate it into the environment.”

Allen said many new campers at first fear it will be like going to school. The camp is held at Vineyards Elementary School in North Naples. But once the activities begin the youngster realize it’s not hard work, just lots of fun.

Parent Patti Byers said that’s the best part of the camp. She is sending her son Cole, 6, to Camp Sunrise.

“This is a wonderful opportunity for the kids,” Byers said. “When he came home he was tired and happy. He came home smiling so I know he had a wonderful day.”

Letting his feet do the talking - Tap dancing has helped autistic boy express himself

Sporting top hat, tails and a red rose boutonniere, Michael McDonough tapped and twirled for his fellow students at Kanawha City Elementary School.

After "The Sunny Side of the Street" song ordered his steps to dart and click for four minutes, the audience smiled, whistled and clapped enthusiastically.

Michael, 11, then winked at his friends, thrust his right thumb high and bowed graciously.

His long-rehearsed number, along with 17 other acts, helped the children celebrate the last day of school Monday.

"I'm very proud of him," said Rose McDonough, not a family relation but his tap dance teacher at RM Productions, a studio she owns and directs. She danced the duet with Michael Monday.

Michael has autism -- a neurological disorder shared by as many as 1.5 million Americans. He has difficulties with communication and social interaction.

He's learned how to think in patterns, remember sequences, adapt to the limelight and feel comfortable performing.

"Absolutely, it has helped him," McDonough said. "It helps communications-wise. It has improved a whole, whole lot. He's able to express himself with more confidence.”

McDonough, who administers arts grants for the state, said dancing works well as a form of therapy for people with developmental disabilities. A former Shawnee Hills "Creative Expressions" instructor, she'd like to see more participation in such programs in West Virginia.

"It really helps open them up," she said. "Dance is another form of communication.”

Michael started taking tap lessons a year ago. But like most kids, he had a love-hate relationship with the demands of discipline, said his father, Steve McDonough. Carrie Green of the Autism Services Center took the classes with him and even performed on stage with him for his June 1 recital.

But after taking a few classes, watching videos of past recitals and examining costume books, Michael's interest blossomed.

After fitting for the rented tux, Michael asked if a big, black car would be calling for him, said his mother, Teresa McDonough. He also wondered if the recital audience would carry signs with his name on them.

Michael also enjoys the computer, reading, video games, swimming and spelling bees.

His autism mentor, Jeanette Higginbotham, accompanies him to Rhonda Perry's fourth-grade classroom during school, to help direct Michael and keep him on track. Itinerant teacher Betsy Fleshman helps round out his team.

Michael's mother gives credit for his relatively high degree of functioning to intense work since his diagnosis at age 2 1/2.

"When he does a class play, he's very dramatic," she said. "He makes up stories. And he always does voice animations.”

(KRT) - He's been warbling for years that he writes the songs that make the whole world sing, but when Barry Manilow got young Steven Conover crooning "Copacabana," Steven's mother, Jane, was floored.

The 5-year old boy is autistic. Until a few months ago, he had spoken only a handful of words, such as "moon down" and "sun up.”

Lying in bed one recent night in their Huntington Beach home, Steven looked at his mom and said, with music in his voice: "I remember all my life.”

Jane sat up. This was her son's first true sentence. But she was confused by what he was trying to tell her.

"I remember saying, `All your life, what? You're only 5 years old. What do you remember?'" she recalls.

Jane knew it well because she is a huge Barry Manilow fan. In fact, she sings Manilow songs. Jane was half of a sister act, with Carrie, performing at parties on Catalina Island, Calif. The Blaty Sisters, they called themselves.

Jane's name was Jane Blaty. Until she married Tom Conover. They met doing "Pirates of Penzance" in the Avalon Community Theater.

They fell in love, with each other and the island. Tom earned a living as a skipper on a glass-bottomed boat. They decided to make Catalina their home.

First Mary was born. Four years later came Steven. Shortly before Steven turned 2, the parents had a sense something was wrong with their second-born.

Jane recalls a small circus coming to the island. A clown bent down in front of Steven and began making balloon animals.

"(Steven) looked right through him," Jane said. The clown shrugged his shoulders and walked away. There were other signs. He stopped making eye contact. And instead of talking, he howled and grunted. There was a lot of crying and screaming. His parents thought maybe he was deaf.

About the time he turned 2, they got a different diagnosis: autism. Doctors told Jane and Tom they would probably need to leave the island. It simply didn't have the support and schools they were going to need.

The family gave up their life on Catalina and boarded a ferry for the mainland, renting a townhouse in Huntington Beach, Calif. "We were devastated," Jane said. "We were going to retire there.”

Jane turned to singing Manilow songs along with her CDs. Her stage is her minivan and her audience is her children, now including Jacob, 3. She guesses that's how Steven learned the words of the soft-rock legend.

The first time Steven requested "Manilow, Manilow" they were driving in the van. "I thought he said `manhole.' I said, `What the heck?' When she figured out he was asking for Barry, her husband popped the CD in. "I looked back at him and his face just lit up. You'd think he just walked into a candy store.”

After that, his mom put a boombox on the floor in the corner of her bedroom along with some CDs, like "Manilow Sings Sinatra." When Steven wants to, he can go there and play the songs. His favorite is "Ultimate Manilow," 20 hits from the `70s and `80s.

Steven's current favorite song is "It's a Miracle." He listens to the song over and over, often stopping after the piano intro to start it over again. Sometimes he sings along.

Jane recently shared the news with Steven's teacher at Pleasant View Elementary School in Huntington Beach where he is in a class for children with special needs. Encouraged, his teacher has incorporated Barry into the boy's routine.

She laminated a picture of the softly-lighted showman and taped it to Steven's "request board." The board is a positive-reinforcement device.

A typical board is divided in half. On one side might be the word "first" and under that a picture of a dog; On the other side the word "then" and a picture of a fruit snack. In other words, say "dog," and you'll get a snack.

On Steven's board, Barry's photo is permanently pasted under the word "then." In other words, say "dog," and you'll get to hear a Barry Manilow song.

Steven gets to walk over to a couch, clap on a set of headphones - and spin a Manilow song on the boombox.

His parents say their son's vocabulary has grown about 200 words since the Barry breakthrough. "And since he has been talking more, he doesn't get as agitated." Dearer to their heart, they have a way to relate to her son.

Every day at 2:45 p.m. a yellow school bus pulls up in front of the Conovers' house.

Steven climbs down the steps and takes off running for a tree two doors down in a neighbor's yard. It's a thick, bushy tree. He climbs inside. His mom stands below him.

After a few minutes of singing, he climbs down and ducks into a bush. "Her name is Lola," he sings. "She was a showgirl.”

Jane is having her great-grandmother's piano shipped here from Arizona. Lillieth Grand believes it's the smartest thing they can do.

Grand is executive director of Music Therapy Services of Orange County, Calif. With a degree in music therapy from the University of Kansas and a master's degree in special education, she contracts with seven school districts in Orange County to work with special needs students, particularly those with autism.

"Music follows a different neurological pathway than language," she said. "Music actually offers us a different way in, if you will.”

So a person's pathway for language can be damaged, as is the case for many autistic children, but their music pathways work.

Grand once had a child who could decode pretty much any word, even reading the newspaper, but it was all meaningless. Once she began singing stories to him, he answered questions that showed he was comprehending what he heard.

"Music is a very powerful tool," she said. The type of music depends on the person. "What sounds soothing to one person may sound annoying to someone else." Grand has one child now who is responding to rap. Another sings Frank Sinatra songs because that's what his dad listens to.

Often the child's preference is discovered in the same way Steven let his parents know he was a Manilow fan.

"It's the only thing they ask for," Grand said. "Or it's the one time of the day when they are calm.”

Jane, in fact, refers to the corner of her bedroom where the boombox and Barry CDs sit as her son's "calm corner.”

"Go to calm," she tells Steven when he gets wound up, pacing around the living room. "Go to calm." He runs down the hallway. Sprawls on her carpet. And presses play. Barry's vocals stir. And Steven starts to sing along.

[Brief commentary: What next? Luther Vandross? Dr. Dre? Before attempting Barry Manilow at home, consult your physician. –LS.]

Public demand from parents worried about the potential dangers of the controversial triple MMR jab has led a company offering single vaccines to return to Exeter [Exeter is on the southern-most peninsula of England. – editor.]

Private company Health-choice UK says it has been inundated with calls due to new research claiming the triple MMR (measles, mumps, rubella) vaccine favoured by the Government can cause permanent neurological damage in some children.

Since the publication of the report in the medical journal International Paediatrics, Healthchoice UK, which carried out jabs on around 80 children in Exeter at the end of March, has received hundreds of calls from worried parents.

The company is now due to return to Exeter on June 29 to begin another cycle of single MMR jabs. Kathryn Durnford, from Healthchoice UK, said demand from parents had prompted the idea of another cycle of jabs. She

said: "If there is a risk, no matter how small, we should revert to the tried and tested way of immunising children for these diseases. The single vaccines were around pre-MMR, with no rising levels of autistic children.

"The Department of Health has failed to give a reasonable answer as to why, since the introduction of the triple MMR, we have almost epidemic levels of autistic children in the UK. Parents should have the choice to vaccinate their children separately."

The children will return to the Natural Health Clinic, in Queen's Walk, for the rubella - German measles - jab followed by mumps 12 weeks later. The course of injections costs £240 ($400).

Exeter mother-of-three Esther Chambers said the single jabs should be available on the National Health Service.

Esther, who took her two-year-old son Samuel to have the measles vaccine at the recent clinic, said: "This clinic is a good idea, but the Government should give parents the choice. A lot of parents won't be able to afford the single jabs and people shouldn't have to put a price on their children's health."

Healthchoice UK will be at the Natural Health Clinic in Exeter on June 29. Appointments can be booked on 0870 4423993.

The first time doctors suggested that Carol Malka put her son Robert in a mental hospital, he was 6 and had set fire to a baby-sitter's house. "I said, 'No way, he's just a baby,' " she recalled.

The turning point came last fall, when Robert, 14 and diagnosed with bipolar disorder, held his mother and two brothers hostage in their car for two hours, breaking out windows and punching them when they tried to escape.

Malka knew then that he needed intensive treatment. What she didn't know was that to get it, she would have to give him up.

Because her private insurer -- like many insurers -- wouldn't pay for long-term hospitalization, the only option was for the state to fund Robert's treatment through Medicaid. Which meant Malka had to relinquish custody to New Jersey's child-welfare system.

"That's a horrible thing," said the 34-year-old Flemington office manager, who allowed the state to take custody of her son on Feb. 21. "He didn't ask to have the problems that he has, and I don't think he should be ripped out of his family because I can't pay for his treatment."

Malka's agonizing situation is not that unusual. A recent report from the U.S. General Accounting Office found that more than 12,700 parents temporarily severed ties with their children in exchange for mental-health care in 2001.

Advocates and the GAO say the numbers of parents forced to trade custody for care is actually much higher, since 32 states did not respond to the survey and no formal tracking of such placements occurs.

Another survey, by the National Alliance for the Mentally Ill (NAMI), says one in five parents of mentally ill children temporarily gave them up to obtain services they could not afford otherwise.

"We know that the GAO report is just the tip of the iceberg," said Tammy Seltzer, a staff attorney at the Bazelon Center for Mental Health Law in Washington.

"Custody relinquishment has been documented in at least half the states in the country, but of course even one family's being asked to make such an impossible choice is too much."

According to the GAO, children were placed in either foster care or the juvenile-justice system. Most are severely mentally ill and many are violent, disrupting home life and making it virtually impossible for parents to care for siblings.

"It seems like a medieval punishment," said Glenda Fine, president of Parents Involved Network of Pennsylvania, an advocacy group.

Even more troubling for parents is that some states compel them to publicly state that they are abusing or neglecting their children just to get them into the foster-care system. Once they give them up, parents may have to win a judge's approval to get the children back.

"Families do this out of desperation," said Trina Osher, a spokeswoman for Federation of Families for Children's Mental Health, who relinquished her son for five years. "They treat you like an unfit parent and your child as a problem child. This is not the reason you're there."

For parents who have tried navigating the fragmented and overburdened mental-health system, giving up custody can seem like their only choice. Instead of helping, the practice often exacerbates already stressful situations.

"It's very hard to take," Osher said. Her son, who was 10 when she gave him up so he could be treated at a residential center, "felt abandoned, like the family had just thrown him away."

Her other children were fearful they would be sent away, too. "It was destructive to the family bond. It took us many years to recover from it. We're still working on it," she said.

Darcy Gruttadaro, director of NAMI's child and adolescent action center, said taking emotionally ill children from their parents is "therapeutically the worst possible outcome."

Thirteen states have outlawed custody relinquishment of children in exchange for mental health care. In 1992, Pennsylvania banned the practice, and allows any child diagnosed with a disability to receive Medicaid coverage, regardless of income, said Joan Erney, deputy secretary for the state Office of Mental Health and Substance Abuse Services.

Still, according to the GAO survey, 71 children in the state were relinquished to foster care for mental-health treatment in 2001.

Children "still fall through the cracks," Erney acknowledged, but she said the numbers in the report "seem high to me."

"We do not under any circumstances permit counties to suggest or offer as an option that families give up custody to access mental-health services," she said.

New Jersey, which did not respond to the GAO survey, also instituted changes and in 2000 launched the Children's System of Care Initiative, which ensures that families get mental-health services "without getting involved in child-protective services at all," program director Julie Caliwan said.

Though the program was scheduled to be in place statewide by January, because of funding problems it has been rolled out in only seven counties -- Burlington, Monmouth, Union, Cape May, Atlantic, Mercer and Bergen.

Elsewhere in New Jersey, from 1,600 to 1,700 children are in foster care for mental-health treatment, Caliwan estimated.

Six million to eight million children in the United States have emotional or mental disorders, about half of which are serious and persistent, according to the Federation of Families.

The custody dilemma arises because most private insurance plans put strict limits on mental-health coverage. Malka's, for instance, has a 30-day cap on psychiatric services.

Health plans typically pay for outpatient therapy, some hospitalization and medications, but not the intensive services children with severe behavioral problems need, Seltzer said.

Medicaid, however, will pay for long-term residential treatment and what are known as wrap-around services, which might include therapeutic after-school programs, respite care, and other remedies aimed at keeping children in their homes.

Even with coverage, implementation is erratic. Though the federal government provides money to states for home and community-based services for mentally ill children, most states do not take advantage of the program.

States are more willing to pay for higher-end therapies, such as residential treatment, than programs aimed at keeping children in their homes, Gruttadaro said.

"There's a culturally ingrained way of delivering services and a reluctance to try other models," she said, noting that only three states -- Vermont, New York and Kentucky -- have implemented federal Home and Community Based Waivers for mentally ill children.

Moreover, the states, which pay from 50 to 75 percent of Medicaid costs, do not want to drive up their budgets by adding services, she said. Too few mental-health resources and rising numbers of children with serious mental-health issues add to the problem.

The most difficult part for many parents is losing control over their children's treatment and care. Malka said she was told she would be consulted at every step of the way "and this was just being done to qualify for Medicaid." But she cannot visit her son or give him over-the-counter asthma medication without his social worker's approval.

Kathy Minnucci of Ridley Park refused to give up her son, as his doctor and social worker recommended, after her insurance carrier declined to pay for continued residential care. Instead, she sued the company and won.

"They say, 'We're not telling you you have to give up your parental rights." Oh, yes, you are," said Minucci, the mother of six.

Parents are often blamed for their children's problems, she said. At one hospital, she was told that her son, who has stabbed animals and banged his brother's head against a wall, "needed nurturing and parenting."

"'What do you think I was doing for years before the child ended up in his first residential?'" she said she told them. "That's a slap in the face of the parents."

Parents and advocates are looking for relief from the federal government in the form of the Families Opportunity Act, which would open Medicaid coverage to a greater number of mentally ill children, and the Paul Wellstone Parity legislation, which would force insurance companies to make

physical- and mental-health coverage more equitable. Both are pending in Congress.

But those who are familiar with the issue say legislation will not address the root of the problem: a misunderstanding of children's mental illness. Many people still feel that mental illness is really emotional weakness or willful disobedience, advocates say.

After all, said NAMI's Gruttadaro, if a child were ill with asthma or another condition requiring hospitalization, "we wouldn't think of suggesting that services weren't available unless their parents gave them up. With mental illness, it's often considered bad parenting."

A 6-year-old central Ontario boy has won a court decision requiring the provincial government to continue funding his treatment for autism.

Andrew Lowrey of Orillia was diagnosed with the serious and disabling neurobehavioural syndrome when he was 4 years old.

The Ontario government funds intensive behavioural intervention (IBI) therapy for autistic children at a cost of about $50,000 per child per year. However, the funding ends when the child turns 6.

Andrew's parents, David and Maureen Lowrey, challenged the funding cut-off as age discriminatory and contrary to the Canadian Charter of Rights and Freedoms.

On April 11, 2003, Justice Arthur Gans of the Superior Court of Justice granted a temporary injunction compelling the government to continue funding the boy's therapy even though he had reached 6 years of age.

The injunction was to remain in place until Andrew's lawsuit was decided on its merits or until the judgments in similar cases were released later this year.

"Our family is ecstatic, overjoyed and relieved," David Lowrey said in a release.

"Many autistic children can be cured of autism, if they get IBI treatment early enough and long enough. Andrew was late entering IBI therapy, but his progress was truly exceptional and his prognosis is excellent.”

"This is a great decision for Andrew, and for other autistic children," said Patrick Lassaline, one of several lawyers representing Andrew in his legal challenge.

This may be the last legal challenge for the boy, said the lawyer who argued Andrew's motion before Lane.

"Similar cases are currently being heard in the Ontario Superior Court of Justice and decisions may be rendered later this year. The outcome in those cases will likely determine the law on a final basis, subject to any appeals," said Robert Durante.

"Although those decisions will impact Andrew's case, hopefully Andrew's IBI treatment will have run its intended therapeutic course by that time.”

Scientists working with cells that may someday be used to replace diseased or damaged cells in the brain have taken neural stem cell technology a key step closer to the clinic.

Writing in the current online edition (June 2003) of the Journal of Neurochemistry, scientists from the University of Wisconsin-Madison's Waisman Center describe the first molecular profile for human fetal neural stem cell lines that have been coaxed to thrive in culture for more than a year.

The work is an in-depth analysis of global gene expression in human neural stem cells and demonstrates a method for prolonging the shelf life of cultured fetal stem cells, making it possible to generate enough cells to use to treat disease, says Lynda Wright, the lead author of the paper.

"We have now characterized long-term neural stem cells lines," she says. "That genetic characterization - and our ability to grow these lines for a year or more - is one of the major steps toward clinical application."

Unlike human embryonic stem cells, stem cells derived from fetal tissue are not capable of growing in culture indefinitely. But because neural fetal stem cells have been available to science for a much longer period than cells derived from embryos, their capabilities are better known to scientists and they may reach the clinic as therapies for disorders like Parkinson's and amyotrophic lateral sclerosis (ALS) much sooner.

In culture, the cells can be coaxed into becoming "neurospheres," aggregates of precursor brain cells that, when implanted, can migrate to different parts of the brain, integrate themselves and develop into many of the different types of specialized cells that make up the brain.

"These cells are the basis for future therapies. These are the cells we want to transplant," said Clive Svendsen, senior author of the Journal of Neurochemistry paper and a leading authority on neural stem cells.

But scientists have been limited by the tendency of these cells to peter out in culture, making it difficult to generate quantities that could be used therapeutically. The Wisconsin team reported work on three cell lines that were kept growing and dividing in culture for 50 weeks.

The Wisconsin researchers were able to extend the shelf life of the neural stem cell lines by adding a signaling chemical known as leukemia inhibitory factor to the medium in which the cells were grown.

The cells were then subjected to "gene chip" analysis, a powerful method for scanning the activity of thousands of genes at once. Nearly 33,000 genes were monitored across the three cell lines to chart genetic activity. Knowing what genes are at work is critical for characterizing and preparing cells for use in transplant therapy.

"This is the first real genetic analysis of neural stem cells," says Svendsen. "It is like creating a library and a bank at the same time."

By tuning in to the genes that are at work in the neurospheres, scientists will be able to gain the molecular insight necessary to create cells that can be customized for therapy. For example, the Wisconsin group was able to monitor the activity of genes that influence immune response.

A critical hurdle for any cells or tissue used in transplants is finding ways to get around the body's immune system, which targets foreign cells and tissue for rejection. Through genetic manipulation, it may be possible to create cells that fool the immune system, obviating the need for drugs to suppress the immune system in order for the transplant to be accepted by the body.

"We saw a huge number of MHC (major histocompatibility complex) genes that were affected," Svendsen says. "This is how cell surfaces are influenced so that the immune system can recognize them."

Svendsen emphasizes that while the new work represents necessary and key steps on the path to clinical use of stem cells, much work remains to be done before such cells are used in therapy.

"This gets us closer," he says. "But we still have a lot of work to do before these cells achieve their promise as treatments for neural diseases."

Svendsen says the data from the gene chip analysis would be placed online and made available to other researchers studying neural stem cells.

This is in regards to article about the treatment of Transdermal MAO Inhibitor Appears Effective for ADHD.

What we're talking about here is treating the effects of mercury on the brain. It is the very same anti-depressant which was used for depression. I was prescribed an MAO inhibitor, Parnate, for depression. I discovered several years later that I had mercury poisoning from mercury dental amalgams. The MAO inhibitor worked, and also camoflauged the mercury toxicity.

The mercury needs to be addressed and eliminated from the body. The MAO's take care of the symptoms, but the symptoms are cured with the elimintion of the mercury. Years of MAO inhibitors can cause liver damage.

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