Schafer Autism Report June 13, 2003

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It took pleading e-mails, letters and phone calls to Special Olympics officials and media attention, but eventually, Annamarie Tongue succeeded.

The Wading River mother will travel to the World Special Olympics in Ireland this weekend with her son, Scott, 15, who will be in the equestrian competition.

It's an experience she thought her son would not have after Special Olympics officials said she could not fly one of their chartered planes to Ireland nor pay for a separate flight for her and Scott, who is autistic and has anxiety problems.

But weeks after Tongue's predicament hit the media in early March and a flurry of phone calls from upset parents followed, she received word that Special Olympics officials would allow the Tongues to take their own flight to Ireland.

“I'm happy that he's going ... but I'm totally disgusted with this organization,” Tongue said Wednesday. “They really haven't changed their attitude. I made a lot of noise and I think that's the only reason that he got to come with me.”

Scott Tongue was diagnosed with Asperger syndrome, a mild form of autism, when he was 8. He is above average intellectually but has social issues, such as anger control, his mother said.

That would have made flying to Ireland alone a great difficulty, Annamarie Tongue insists.

While there is no written rule that Special Olympics athletes must fly with their teams, officials say they created a rigid traveling system this year -- the first time the event is being held overseas -- for organizational and “team building” purposes.

In March, Jim Schmutz, managing director for Special Olympics North America in Washington, D.C., said they could not bend the rules for one athlete.

But Wednesday, Schmutz said they changed their decision later in March after talking the matter through. “Obviously the point was to focus on the athlete and provide the opportunity, so we came to a resolution that everybody was comfortable with,” Schmutz said.

Annamarie Tongue said though she's happy her son will be able to participate, she's still frustrated by the lack of information she's receiving from officials.

The team will fly to Belfast next week, where they will sightsee as part of a host-town program. Next, they will go to Dublin, where the games take place from June 21 to June 29. Tongue said she doesn't know where her son is staying in Dublin nor what activities are planned in Belfast. “He gets nervous, he gets upset when he doesn't know what's going to happen,” Tongue said.

Schmutz said much of the activities are being planned by the host families in Belfast. He noted that the games are very well organized, considering that 7,000 athletes from 155 countries are participating.

Annamarie and Scott Tongue will fly out of Kennedy Airport on Saturday at 6:30 p.m. Tongue paid $1,200 for the tickets, money she said is worth the price to have her son ride in a worldwide event.

Wednesday, Tongue and his mother went to The Red Barn in Brookville, where he is coached by Maryanne Liberg. Liberg was appointed a coach for the World Special Olympics' equestrian team when Special Olympics officials were trying to resolve the predicament.

“I'm happy that he's able to go,” said Liberg. “It's something that he has worked very hard for. ... It's nice to see this all coming together for him.

Despite the state budget crisis, the Medicaid program last year spent $19.5 million to hospitalize hundreds of mentally ill children who no longer needed acute care and most likely would have recovered more quickly in less restrictive settings, experts say. Providing appropriate care for these children in residential or community mental health programs would have saved the state at least $7 million, according to an analysis by the Massachusetts Association of Behavioral Health Systems, the trade group for psychiatric hospitals. But these children remained stuck in expensive, locked wards because other programs were full. The state made little progress in devising solutions as the problem worsened.

One young boy, hospitalized because of hallucinations and for assaulting other children, was ready for release after a few weeks but remained in Pembroke Hospital for 17 months, at a cost of $244,791. His behavior periodically worsened and his schooling suffered until he was finally placed in a residential school last winter, a hospital administrator said.

“The state finds it easier to write a check and forget about these kids instead of getting them into the community care they need,” said Lisa Lambert, assistant director of the Parent-Professional Advocacy League, a group for parents of mentally ill children.

In the last three years, spending on children stuck in mental hospitals tripled from $6.4 million to $19.5 million. As the number of children who were stuck grew, spending on other mental health services that might have eased the problem increased much more modestly, according to state figures. The number of children stuck at any one time reached at all-time high of 138 in February.

“It's absolutely outrageous,” said Ronald Preston, state secretary of health and human services. “We're spending too much for this hospital care . . . and it's not good for the kids.

“It's a very high priority for us,” Preston added. “But we need to construct a proper network [of care], and it's going to take us some time to do that.”

Mental health providers are frustrated that three administrations have failed to solve the gridlock in the state's mental health system for children. Families have filed a class-action lawsuit accusing the state of violating federal law by failing to provide adequate home-based treatment.

The latest analysis by the state's association of mental hospitals suggests that placing stuck children in residential schools, specialized foster care, or other settings outside the home would cost at most two-thirds of what the state is currently spending to keep them hospitalized. If more children were well enough to return home with counseling and support, the cost would be even less.

“We want to get kids out of hospitals, even if it means empty beds for the hospitals,” said David Matteodo, executive director of the association. “This is expensive care that isn't clinically appropriate.”

Children are declared “stuck” when doctors and Medicaid officials agree that they no longer need acute care, but cannot find a place to send them. At that point, Medicaid pays hospitals a slightly lower rate per day. Outside the hospital, the state departments of mental health, social services, mental retardation and medical assistance, as well as local school officials, are often at odds over how best to serve these children and pay for their care.

That was part of the problem in the case of the boy admitted to Pembroke Hospital in September 2001 who was finally discharged in February, 17 months after he was stabilized and ready to leave, according to Tamsin Trow, the hospital's director of case management. “We did what we could for him, but there was some regression,” said Trow.

One mother watched in horror as her daughter become accustomed to institutional life while she waited for months for a bed in a residential program to become available. Mary Lou, who asked that her last name not be used, said her teenage daughter, Katrina, was hospitalized at Taunton State Hospital when she became suicidal and assaultive to relatives.

After months of needed treatment, Katrina was ready for a less restrictive setting, but she had to wait, which exacerbated her anxiety, forcing doctors to increase her medications. Finally, space opened up at a South Shore program.

Preston said he doesn't see simply adding more contracted residential beds as the answer, since children would be stuck there if more community-based services weren't available. Meanwhile, he said, the hospital beds would be filled with other needy children.

Daniel Boyce dressed as Harry Potter for Halloween and even now will try on his costume of a black scholar's robe and round, dark-rimmed glasses that are so big he must hold them up by scrunching his nose.

The Dos Caminos second-grader can tell you the fifth book in the whimsical Harry Potter series is due June 21. He is drawn to the novels' magical floating cars and fantasy. If given the choice between going to Dos Caminos or Potter's Hogwarts School of Witchcraft and Wizardry, he catches the query as a trick question.

He is only 8, he says, matter-of-factly. To go to Hogwarts, you must be at least 11.

Daniel loves the adventures of Harry and his friends, of their close calls with trouble and their tales of whooshing across the sky on Quidditch sticks.

Like the characters, Daniel, too, will embark on a journey through the clouds. And when he lands, he will be in Harry's world.

Last month, 12,000 kids nationwide conjured their imaginations and entered a Harry Potter essay contest sponsored by Scholastic Books. Young writers were asked: If you had one power taught to you at Hogwarts, what would it be and why? The tiny Camarillo boy who reads at the fifth-grade level was picked as one of 10 winners. From June 24-27, he will visit London courtesy of Scholastic. Winners will go to Royal Albert Hall and hear author J.K. Rowling read from the newest in the series: “Harry Potter and the Order of the Phoenix.”

Around the Boyces' neat, two-story home, excitement abounds around the trip. Daniel and his mother, Nancy Boyce, have passports on rush order so they arrive before their trek. The watch around Daniel's wrist already reads London time.

Aside from being proud of their son, Daniel's parents are touched by words in his essay. Daniel wrote he would create an “Autistic Cure Potion.” He would use it for his younger sister, Suzie, who is 5.

“If Suzie didn't have autism,” he wrote, “... she could just be a normal kid.”

As she scuffled around the house in a silky pink princess dress from Halloween, Suzie looked like any other child.

Autism, however, left her with sensory integration problems. She cannot filter loud sounds. Laughter prompts her to scream and cry. In his essay, Daniel wrote that he would concoct a “Laughing Potion” so Suzie could giggle at jokes and see “funny movies at the theater.”

Autism robbed Suzie of know-how to play. Losing a game can spark temper tantrums that last for hours. She cannot handle change in routine, and it is hard for Daniel to bring friends home. Because her behavior goes downhill when she is overloaded by crowds, one parent must stay home if Daniel has a concert at school.

“It was his view of what it's like to have a sister with autism,” Nancy Boyce said. “He lives with it every day.”

For instance, because Suzie has daily occupational or speech therapy, Daniel spends a lot of time in waiting rooms. During these visits, he passes the time by reading books such as Harry Potter.

After winning last week, word spread fast about Daniel's news. One of the first people he told was his teacher, Cheryl Parker. She told him about the contest after learning about it in an e-mail.

“I threw my hands up and screamed and jumped up and down and hugged him,” she said. “I just had a really good feeling about it.”

Daniel plans to send his teacher a postcard from England. The boy, who read four thick Harry Potter books in under a year, also hopes to visit the landmarks of their pages. He wants his picture taken at King's Cross Station at platform nine and three-quarters. It is the spot where Harry Potter leaves for school aboard the Hogwarts Express.

Daniel ordered an advance copy of the newest Harry Potter book for his collection. Instead of simply reading it at home, he plans to take it to London. He will follow along as its author reads aloud right in front of him.

Autism Conferences Online is an information breakthrough. Attendees can save $130.00 U.S. by registering by June 15th. It's a carefully thought out video recording created specifically for Autism Today that can be viewed on the internet from any computer based screen. Each month a new world renowned expert presents theories, research, cases and conclusions that are bound to inform and enlighten you.

Over the next twelve months, presenters such as Dr. Peter Gerhardt, Raun Kaufman, Lisa Lewis, Dr. William Shaw, Stephen Shore, Margaret Bauman, Michael Powers, Steven Gutstein, Dr. William Walsh and the list keeps growing, will brief you in your living rooms, school auditoriums in-service meetings and lecture halls, virtually anywhere and any time you choose! Each membership includes sixty hours access to the site to view top-notch presenters again and again. Once a presenter is live on the site, you can view their presentation anytime at your convenience.

Additional hours can be purchased if needed. We've even included a FREE Autism Today membership valued at $60.00 where you can have complete unlimited access to all the articles, prized work and Resident Expert section with over thirty-five top autism and Asperger's syndrome experts. Be sure to visit the Resident Expert section of http://www.autismtoday.com to meet our expertts.

Four ways to join, simply sign up online, by fax, by phone or by email. You will receive a username and password and you can login from any computer to view the presentations during in-services, show family members or whatever is needed. You can rewind, fast forward and print out handouts. There's even an email interactive section to ask the experts questions to do with their presentations. They will then address the question either through email or post on the site.

From now on, you can be in the front row seat and get the latest, most current information right when you need it. It's the best, risk-free, affordable, flexible method available to bring the most current, helpful information directly to you, right where you need it most, in your own community.

Scientists, Patients Promote Alternatives to Human Embryonic Stem Cells to Senate Panel

Scientists told a Senate panel Thursday that alternatives to human embryonic stem cells, including adult stem cell treatment and umbilical cord blood transplants, have had proven success in helping people with crippling and ordinarily fatal diseases.

“There is abundant evidence that adult stem cells can be used as a therapy and are readily available in people,” Dr. Jean Peduzzi-Nelson of the University of Alabama at Birmingham told the Senate Commerce science subcommittee. “The conclusion from the preclinical studies is that adult stem cells work just as well, if not better, than embryonic stem cells and are probably safer.”

The hearing was lead by subcommittee chairman Sen. Sam Brownback, R-Kan., who has questioned the ethical propriety and the necessity of embryonic stem cell research.

President Bush also opposes using human embryonic stem cells in medical research for a wide range of neurological and genetic diseases because it involves the death of an embryo, and the Bush administration has put in place strict guidelines controlling the use of federal dollars for embryonic stem cell research.

Brownback trumpeted the “amazing results” from alternative methods, inviting to the witness stand 17-year-old Keone Penn of Snellville, Ga., who five years ago became one of the first to be successfully treated for sickle cell anemia with unrelated umbilical cord blood stem cells.

Penn was treated at the National Cord Blood Program at the New York Blood Center, whose director, Dr. Pablo Rubinstein, said cord blood banks have provided transplants for more than 3,500 patients worldwide, and 1,370 at his center.

He said blood left behind in the placenta and umbilical cord after birth and usually discarded has resulted in less immune reactions, greater availability in less time and less risk of virus infection.

Brownback promised to push for federal funds for a national cord blood bank system.

Dr. David Hess, head of the neurology department at the Medical College of Georgia, cited the advantages of obtaining adult stem cells from bone marrow, saying they are easily isolated, will not be rejected by the patient from which they are taken and avoid the ethical concerns of embryonic stem cells. “The field is moving fast. Bone marrow derived stem cells are already being tested in small numbers of patients with heart attacks.”

Proponents of embryonic stem cells say they have greater potential for regenerative medicine because they are less developed than adult cells and thus can more easily be cultured into new tissue that can be used to replace or repair diseased organs.

Peduzzi-Nelson, however, cited studies that adult stem cells from the brain, the upper nose, the cornea and other parts of the eye, teeth and skin are capable of forming neurons.

One witness, Dr. John McDonald of the Washington University School of Medicine neurology department, stressed that no research door, including that leading to embryonic stem cell research, should be closed.

Because of their less formed state, it's “much more feasible to try to encourage embryonic stem cells to develop into whichever type of cell is needed,” he said. “It's entirely too early to rule out any one of these areas of research in favor of any other.”

New Study Reveals How The Brain Processes Threats Of Anger And Fear For the amygdalaphiles.

An angry face looking away from you and a fearful face staring right at you trigger the highest activity in the amygdala, the part of the brain that regulates emotional behavior, says a study in the latest issue of Science.

“Where someone else is looking when they're expressing emotion affects how our brain processes that info,” says the study's lead author, Reginald Adams, a postdoctoral fellow at Harvard University in Boston. Adams completed this research while he was at Dartmouth College in Hanover, N.H.

“The amygdala might be useful in detecting a threat and making sense of that threat,” he explains. And, he says, if someone is angry and looking away from you, or frightened and looking straight at you, it's hard for you to know where the threat is coming from.

“That uncertainty might add to the threat value. The amygdala just has to work harder to figure it out,” he says.

Adams and his colleagues asked 11 people to undergo functional magnetic resonance imaging, or fMRI. The device allows researchers to see which parts of the brain become active during the test.

The volunteers were shown several different pictures of a man. Sometimes his face was angry and looking right at them. Sometimes he was scared and looking at them. Other times, he made the same faces, but his gaze was directed off to the side. Adams says the researchers actually manipulated the gaze using computer software, so the expression of fear or anger didn't change.

Adams says the researchers said the amygdala was most active for the angry face looking away and the fearful gaze looking directly at the study participants.

He believes the higher response was due to the uncertainty of the situations. If someone is looking right at you with an angry face, you can assume he's angry at you. Likewise, if someone is looking away and he's fearful, you can assume the threat is coming from that direction.

But, if someone is looking directly at you and he's scared, or he's looking away and angry, you probably can't immediately identify the source of those emotions.

“In situations where the potential threat is not as direct, such as with averted anger, there seems to be more response in the amygdala,” says Dr. Kenneth Skodnek, chair of the departments of psychiatry and psychology at Nassau University Medical Center in East Meadow, N.Y.

Skodnek says the reason may be that when the threat is immediate, the brain acts reflexively, “without involving conscious thought or any sophisticated processing of the information.” As an example he says, if another car pulls out in front of you while you are driving, you instantly jam on your brakes without consciously thinking about it.

But if there's no instantaneous need to react to a threat, such as when someone is angry and looking away from you, Skodnek says it gives your brain more time to process and analyze the threat.

“My understanding of the amygdala is that it is involved in assessing situations in terms of past experience. So the less clear a situation is, the more there would be a focus on going to past memories to try to understand or make sense out of what's perceived as a threat,” he says.

Adams says the only immediate practical implication from his finding would be for brain-damaged patients in helping them to understand potential impairments in brain function if the amygdala were damaged.

Skodnek adds that this is another study that shows how complex the human mind is.

For 40 years, enzymes known as protein kinases, which modify other proteins, have been known to be involved in nerve cells' ability to “unplug the phone” -- long term depression (LTD) -- and the opposite effect, long term potentiation (LTP). In those early experiments, nerve cells missing certain protein kinases failed to respond properly in the lab, and mice missing the same enzymes couldn't learn or remember normally. But those experiments aren't good enough to link LTD and LTP to learning, say the researchers.

For decades, scientists have proposed that learning occurs and memories are stored when connections among nerve cells are weakened or strengthened, but there's been no direct way to prove it.

GluR2 firmly connects protein kinases to LTD in Purkinje cells, but it will take a genetically engineered mouse to make the final connection between GluR2 and behavior -- or not. Developing a mouse with the appropriately mutated GluR2 may take a year or more, notes Huganir, whose M.D.-Ph.D. student Jordan Steinberg has taken on the project.

If GluR2 modification does play a role in learning and memory, it is most likely to do so for simple motor skills, since the Purkinje neurons used in this study originate in the cerebellum, the home of motor skills in the brain.

In their current study, graduate student Hee Jung Chung and Steinberg created genetic instructions to build two mutant versions of GluR2 that prevented a specific modification (phosphorylation) by a protein kinase. The scientists then coated microscopic beads of gold with the genetic instructions for mutant GluR2 and green fluorescent protein. Using a “gene gun,” the scientists shot the beads into neurons from mice missing GluR2.

Linden tested the reactions of glowing neurons, which also had the mutant GluR2, to stimulations known to induce LTD. “LTD was completely, absolutely, 100 percent gone with either change to GluR2,” he says, noting that the GluR2 pathway is likely just one of many that allow nerve cells to undergo LTD.

Nerve cells “talk” to one another with the help of chemicals like glutamate. One neuron produces the chemical and sends it across to a neighboring cell where it latches on and creates a cascade of events inside the cell. In response to certain patterns of stimulation, a nerve cell will pull the binding spots for glutamate into the cell, weakening its connections and ending the “conversation.”

Now, a Johns Hopkins study using mouse cells reveals what seems to be the very last step that occurs as nerve cells temporarily weaken their connections. In the June 13 issue of Science, the Hopkins team also reports that blocking this step prevents connections from weakening without affecting anything else, making it possible -- finally -- to see if weakening connections really do contribute to learning and memory.

The crucial last step revealed in the Hopkins work is a single, tiny modification of a protein called GluR2, which helps brain cells detect the chemical glutamate. By preventing that modification, weakening didn't occur, and the mouse neurons stayed in touch with their neighbors when they shouldn't have.

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