SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

What's Happening? Check The Autism Calendar of Events:

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Friday, February 07, 2003

RESEARCH

* New Method Finds Gene Cause Of Some Autism – Study

* New Genetic 'Fishing Net' Harvests Elusive Autism Gene

* Newly Developed Tool Aids Study Of Fragile X Syndrome

AWARENESS – Autism Villains and Heroes

* The NY Review of Books: The Strange Case / Rehabilitation of Dr. B.

* 'You Find Your Humanity'

TREATMENT / CARE

* An Answer To Autism in Massachusetts

* BC Canadian Parents Battle for Treatment Program

* After-School Program For Autistic Children in Boston

PUBLIC HEALTH

* In Scotland, Parents Have Safer Vax For Kids - But If They Don't Ask

RESEARCH

New Method Finds Gene Cause Of Some Autism - Study

Using a new method that separates patients by their symptoms, US researchers said yesterday they found a new genetic link to autism and suggested the approach might be used to pinpoint the genetic causes of other diseases as well.

The research also suggests that several different causes may be behind autism, a disturbing and increasingly common behavioural disorder that baffles parents and doctors alike.

The new study, published in the American Journal of Human Genetics, links certain types of autism to a place on chromosome 15 linked with several other disorders.

It had been suspected in autism for some time, but researchers had been unable to show that people with certain versions of genes on chromosome 15 were more likely to have autism.

The team at Duke University Medical Centre in North Carolina and at the University of South Carolina decided to separate out autistic children by their actual behaviours.

Autism, which affects one in 1000 children in the United States, is defined by a wide range of symptoms, many of which are just an exaggeration of normal childhood behaviour.

"All kids with autism by definition have some form of repetitive behaviour," Duke child psychologist Michael Cuccaro, who helped lead the study, said in a telephone interview.

"One kind of a classical autism feature ... may be a child doing something with his hands and arms. He might be flapping them, might be waving them in front of the eyes."

Cuccaro's team focused on children with other, more prominent symptoms. "These are kids who if you changed the furniture in the room, they become extremely upset and have difficulty with that. If they normally went to bed at 7:30 and before they did that they took a bath and put pyjamas on, if you changed that they would have great difficulty with that."

When those particular children and teenagers were separated out, the researchers were able to find a series of mutations on chromosome 15 that seemed to be similar, said Dr Margaret Pericak-Vance, a Duke geneticist who led the study.

They used a statistical trick, but they double-checked and the association was clear, Pericak-Vance said.

Both she and Cuccaro say that supports what many researchers have said - that autism is a complex disease and may not be caused by the same thing in every patient.

"It's like any complex disease - there are a number of underlying causes for it and they manifest similarly," she said. "The next thing is to look at possible interactions between the genes in this region. This region seems to be involved in a lot of different disorders."

Pericak-Vance said her team was already trying the new approach to separate out different kinds of Alzheimer's disease. Alzheimer's has different forms - some are seen earlier in life than others, and Pericak-Vance hopes the method might find a genetic difference among them.

The gene on chromosome 15 that seems to be affected in the autism patients controls a neurotransmitter called GABA. That message-carrying chemical acts to turn off brain cells.

As the behaviour seen in these children seems to be an extreme version of what every child does at one time or another, it could be that these particular symptoms are caused by the brain's failure to turn off a signal. In other words, it does not know when to stop - thus the obsessive behaviour.

The research did little to answer questions about whether environmental causes may be behind autism, Cuccaro said. One group of parents believes childhood vaccines may be a cause, although several studies aimed at finding out if that is true have shown no link.

"What we are coming to find about vaccines now is that there is not a lot of support for a link between the vaccine and autism," said Cuccaro.

The study may help scientists find a way to treat autism, which is now incurable. If a precise genetic cause of one behaviour is found, it might be possible to design a drug that will correct it.

That would not be a cure - autism is too complex for that - but it may be possible to moderate some of the symptoms, Cuccaro said.

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New Genetic 'Fishing Net' Harvests Elusive Autism Gene

Duke University Medical Center researchers have developed a new statistical genetic "fishing net" that they have cast into a sea of complex genetic data on autistic children to harvest an elusive autism gene.

Moreover, the researchers said that the success of the approach will be broadly applicable to studying genetic risk factors for other complex genetic diseases, such as hypertension, diabetes and multiple sclerosis.

In this case, the gene, which encodes part of a brain neurotransmitter docking station called the gamma-Aminobutyric Acid Receptor beta3-subunit (GABRB3), has been implicated in autism previously, but never positively linked to the disease. Their findings will be published in the March 2003 issue of the American Journal of Human Genetics.

"Many research groups have been actively looking for genetic risk factors that can lead to autism, but without much success," said Margaret Pericak-Vance, Ph.D., director of the Duke Center for Human Genetics and lead investigator of the study.

Autism is the common term that encompasses an overlapping group of complex developmental disorders that are diagnosed in about one in 1,000 children under the age of 3. Each autistic child has a unique set of characteristics that affect his or her behavior, communication skills and ability to interact with others. It is the very diverse, complex nature of autism that has made it so difficult to locate distinct genetic risk factors, said Pericak-Vance.

After several genetic studies turned up only a few vague genetic clues, the research team decided a new approach was needed. Pericak-Vance hypothesized that grouping patients with similar traits together statistically might enhance the scientists' ability to distinguish relevant genetic risk factors. To provide guidance, the scientists turned to Michael Cuccaro, Ph.D., a clinical child psychologist at Duke with extensive experience diagnosing and treating autism. Cuccaro noticed that some but not all autistic children exhibit repetitive compulsions and extreme difficulty with changes to their daily routine. This character trait -- defined by Cuccaro as "insistence on sameness" or "IS" -- helped the research team identify a subset of autism family data to study in more detail.

Researchers, led by Yujun Shao, Ph.D., a genetic epidemiologist at Duke, reorganized data collected from families in which more than one child is affected by autism and grouped together all the families that reported their autistic child had difficulty with change.

Cuccaro's theory that autistic children could be subdivided into at least two groups gave the team of scientists from Duke and the University of South Carolina an opportunity to test a new statistical method, called "ordered subset analysis," developed by Elizabeth Hauser, Ph.D., assistant research professor of medicine at Duke. This new genetic fishing net allows scientists to sift through complex genetic data and extract genetic risk factors that affect only some of the total group.

In this case, when the researchers applied the new test only to those families whose children scored high in the IS category, they discovered a strong link to the GABRB3 gene on chromosome 15q, where no such link had appeared before.

"This is the first successful application of ordered subset analysis to help us pinpoint a genetic risk factor that would be missed by looking at the larger group." said Pericak-Vance.

The researchers emphasize that this discovery is only the first step in understanding how the GABRB3 gene, or others genes in the same region of chromosome 15 might be involved in autism. Another clue may be gained from previous research that has shown the same area on chromosome 15 is just as responsible for Angelman Syndrome and Prader-Willi Syndrome -- two genetic disorders in which a subset of affected children also exhibit repetitive behavior. Additional research will be necessary to understand how defects in the GABRB3 gene might contribute to autistic disorder, and how other genes or environmental factors also play a role.

"In the short term, however, I think what this will allow us to do is encourage clinicians and researchers working with autistic children to think about autism as consisting of different types or subgroups and not a one-dimensional disorder," said Cuccaro. "I think that subgrouping, over time, will allow us to develop a better understanding of how to treat each individual with autism."

This is a case, said Cuccaro, where identifying subsets of patients based on clinical observations has resulted in a significant neurobiological finding, and it perhaps is pointing a way to bring clinical observations to bear on complex genetic problems.

"The genomic revolution has given us a tremendous wealth of information in terms of a road map and markers for finding disease genes," said Pericak-Vance. "Now, we need to be able to look at complex clinical information and come up with methods that can help us dissect diseases that have multiple risk factors. This new statistical test will allow us to find meaningful genetic risk factors that are diluted out when tested as part of a larger heterogeneous group."

Members of the research team also included Marissa Menold, Chantelle Wolpert, Leigh Elston, Karen Decena, Shannon Donnelly, Robert DeLong, M.D., and John Gilbert, Ph.D., of Duke; and Sarah Ravan, Ruth Abramson and Harry Wright, M.D., of the W.S. Hall Psychiatric Institute at the University of South Carolina. The research was supported by grants from the National Institutes of Health and the National Alliance of Autism Research.

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Autism Resource

To List a Meeting, Workshop or Conference in the Autism Calendar:

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Newly Developed Tool Aids Study Of Fragile X Syndrome

A newly developed tool that allows researchers to study strands of messenger RNA that bind to a specific protein has lifted a layer of mystery involving a common symptom of Fragile X syndrome, report scientists from four institutions, including the University of Illinois at Urbana-Champaign.

The new tool, called Antibody Positioned RNA Amplification (APRA), was created in the lab of James Eberwine, a professor in the department of pharmacology at the University of Pennsylvania School of Medicine. It allows for a detailed analysis in intact cells -- in this case, neurons -- of mRNA (messenger ribonucleic acid), which is essential for the transportation of genetic information from DNA to protein-producing areas.

APRA was created to study mRNA molecules involved with the Fragile X Mental Retardation Protein (FMRP), which when missing leads to Fragile X syndrome, the most common form of inherited mental retardation, especially in males.

APRA and the mRNA-protein interactions it unveiled are detailed in the Feb. 6 issue of the journal Neuron.

Intense interest has focused on FMRP since Illinois researchers William T. Greenough and I.J. Weiler of the Beckman Institute for Advanced Science and Technology, co-authors on the Neuron paper, first reported in 1997 that the Fragile X protein is synthesized at synapses, the connections through which nerve cells communicate.

Using an approach in which FMRP was produced in bacteria, Greenough's postdoctoral associate Andrea Beckel-Mitchener, also a co-author, confirmed the binding of FMRP mRNA with the numerous molecules identified with APRA at Penn. Among them, she found the glucocorticoid receptor, a protein necessary for the regulation of circulating levels of adrenal corticosteroids following exposure to stress.

Weiler found lowered levels of the receptor protein in synaptic preparations. Beckel-Mitchener then carried the confirmation a step further.

Looking in the hippocampus in normal mouse brains, she found glucocorticoid receptors in cell bodies and their associated dendrites. In experimental mice modified to not produce FMRP, the receptors were found in cell bodies but were virtually absent in the dendrites.

Previous research at Stanford University Medical Center and the University of Minnesota had found a deficiency in corticocosteroid regulation after exposure to mild stress in children with Fragile X syndrome. A reduced level of the glucocorticoid receptor, in the absence of the FMRP protein, Weiler said, would plausibly affect corticorsteroid feedback mechanisms, leading to prolonged levels of anxiety in Fragile X patients.

"We have shown that a particular messenger RNA -- the product of a particular gene which encodes the glucocorticoid receptor -- is bound to the Fragile X mental retardation protein, and it is differentially regulated in its expression in neurons of animals than can make FMRP versus animals that cannot," said Greenough, who holds a Swanlund Endowed Chair at Illinois. "In essence, we've shown that a major symptom of Fragile X syndrome is accounted for, in principle, by the binding of FMRP to the gene product, the messenger RNA that encodes this receptor."

The technique and protein-mRNA discoveries offer a new view of Fragile X syndrome and a potential approach to develop new treatments, said Weiler, an adjunct professor of psychology. "Fragile X up to now has been considered to involve a single missing protein, but it turns out that the protein involved is probably governing the production and localization of a group of sub proteins, making this a multigenic disease," she said.

"We are very pleased with this new methodology that Dr. Eberwine has developed," Weiler said, "because for the first time FMRP and its associated mRNAs for this subset of proteins have been localized in situ -- in an intact neuron -- rather than in homogenate brain tissue. So we feel that he has been able to localize the culprits in the act, so to speak."

Now, Weiler said, the entire group of proteins identified by APRA needs to be studied. "Now we can go on to define what it is that Fragile X patients are most basically needing -- in what part of the brain and at what ages,"

she said. "There is some hope for narrowing down the paths of possible remedial steps that could be taken."

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AWARENESS – A Villain and A Hero

The New York Review of Books: The Strange Case / Rehabilitation of Dr. B. Review By Robert Gottlieb

by Theron Raines - Knopf, 518 pp., $35.00

by Stephen Eliot - St. Martin's, 304 pp., $24.95 (to be published in March)

by Richard Pollak - Touchstone, 478 pp., $15.00 (paper)

by Tom Wallace Lyons - Prescott, Durrell, 268 pp. (1983; out of print)

by Nina Sutton, translated from the French by David Sharp - Westview, 606 pp. (1996; out of print)

Within months of his death in 1990, the reputation of Bruno Bettelheim— the revered survivor of the camps, head of the famous Sonia Shankman Orthogenic School for troubled children at the University of Chicago, formidable educator, and author of the acclaimed The Informed Heart, The Empty Fortress, Love Is Not Enough, The Children of the Dream, and The Uses of Enchantment—appeared to be in shreds. Certain former students from the school and several of his former associates were accusing him of everything from plagiarism and lying about his past to brutality and child abuse. He was even bitterly condemned for having taken his own life. So radical and abrupt a shift in perception about a famous and admired man suggests an overpowering personality whom others had feared and resented and only now felt safe to attack.

Indeed, Bettelheim was such a personality—inspiring, seductive, aggressive, irascible, dismissive of fools or perceived enemies, and capable of both great kindness and great unkindness. Like other remarkable men who have been leaders, even gurus, within small, intense, contained institutions —Lee Strasberg at the Actors Studio, William Shawn at The New Yorker— he attracted passionate loyalty and affection but also built up suppressed (or open) resentment in certain of his disciples.

This is clearly what happened with one of Bettelheim's closest associates, Jacquelyn Sanders, who had worked side by side with him for thirteen years, left to marry, and then returned when he chose her to replace him as head of the school on his retirement. She told Bettelheim's relentlessly negative biographer, Richard Pollak, that, having begun in therapy "to realize the degree to which she had allowed herself to be manipulated and exploited," she grew "so angry that she not only stopped calling Bettelheim about school matters but ceased speaking to him for several years." That a serious educator/therapist could break from her former leader only by—temporarily, at least—forgetting both her professional debt to him and the sympathy due an old man who, like Lear, has surrendered his kingdom is less an indictment of Sanders than an indication of just how powerful his hold was on those around him.

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Pollak's The Creation of Dr. B, published in 1997, is one of three extended accounts of Bettelheim's life to have appeared in the past half-dozen years. (Bettelheim steadfastly refused to write his memoirs, and throughout his writings was sparing with details of his personal life.) Pollak makes it clear at the start why he hates—not too strong a word—his

subject: when he was fourteen years old, his disturbed, possibly autistic younger brother, Stephen, then eleven and home for a visit from the Orthogenic School, died in a freak accident; Pollak had been alone with him at the time. When, twenty-five years later, Pollak approached Bettelheim about his brother, Bettelheim heaped contumely on the Pollak parents, particularly the mother; insisted that young Stephen had committed suicide; and told Pollak that the school had warned the family that a visit home might lead to Stephen's harming himself, and that "despite our objection the visit took place...[and] the child died in a carefully contrived accident." As an older brother present at the scene of the fatal accident, Pollak might well have been left with some unacknowledged—and no doubt undeserved—guilt, but there is no hint in his account of anger at himself. Instead, his anger is directed at Bettelheim, who clearly deserves at least some of it for his callousness.

Pollak claims that "I have tried to keep my personal experience of Bruno Bettelheim from unfairly darkening my portrait"; but his book, despite some pro forma appreciation of Bettelheim's achievements, reads like a shout of rage. Which is unfortunate, because the clear bias Pollak demonstrates undercuts the reliability of the charges he makes, and for which, in some cases, he offers convincing evidence.

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A new book by Theron Raines, Rising to the Light: A Portrait of Bruno Bettelheim, is uncannily opposite to Pollak's. Just as Pollak had personal reasons for attacking Bettelheim, Raines has personal reasons for protecting

him: he was Bettelheim's literary agent for decades, and not only admired but loved him. Sometime before Bettelheim's death, Raines began interviewing him for what was at first to be a magazine profile and after a dozen years became this book. Rising to the Light is a slow, earnest attempt to grasp Bettelheim's conflicted nature; to reconcile the nobility Raines found in the man with the ugly accusations that followed his death.

One biographer hates Bettelheim, the other loves him. Again we sense how powerful a psychic presence this complicated man was in the minds of those he was connected to. Bettelheim's view of the school, expressed frequently, was that the children represented the id, the counselors stood for the ego, and he was the super-ego. As such, he played both the Big Bad Wolf and Santa Claus, and as the Wolf he was there to impose order. He certainly succeeded in doing that. Every account of the school stresses the respect, awe, and fear in which he was held, partly through his authority, partly through his uncanny intuitions, partly through his absolute belief in his own rightness and his unswerving determination. Certainly, these are the qualities that made the school the success it became. When the University of Chicago prevailed on Bettelheim to take it over, it was floundering—if "not quite an orphan in 1944," says Raines, "it was surely an unwanted child."

Raines is particularly strong on the early years of the school. Although there had been modest attempts at "milieu therapy" before, there had been nothing remotely as concentrated and organized as what the Orthogenic School became. Central to the plan was the relationship each child was to develop with one or more loving and omnipresent caretakers. And the caretakers had to internalize one of Bettelheim's most important

insights: that a disturbed child's symptoms are his way of expressing his sense of the world and of himself. "You have to understand," Bettelheim said, "that this behavior is the child's greatest achievement. To him, it is saving his life." With this understood, it was possible that—insulated from the pressures of the nuclear family, in an environment that provided structure, love, therapy, education, understanding, and discipline—a disturbed child might slowly, very slowly, abandon his symbolic behavior and achieve a more realistic relationship to the world.

That Bettelheim failed to make real headway with seriously autistic children now appears certain, but that he healed many emotionally disturbed children is equally certain. It's unfortunate that in any discussion of him today, thirteen years after his death, it seems necessary to begin by weighing the posthumous charges against him rather than by assessing his achievements and failures.

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'You Find Your Humanity'

Music Therapist George Gilliam chose to work with developmentally disabled adults, although it meant giving up a career as a jazz guitarist.

ection=LOCAL&year=2003&month=2&day=7 <- - address ends here

Learn about Black History Month at

MULTIMEDIA Listen Here

The Pride singing the song "Exhale" on the CD

"Look Inside Yourself"

You've probably never heard of George Gilliam, even though he once was runner-up in a talent show to a young group called the Jackson 5 and later played guitar with legendary trumpeter Wynton Marsalis and singer Chaka Khan.

That was long ago.

These days, he quietly goes about his job directing Creative Identity in a rented church hall in Anaheim, some months unable to cut himself a paycheck because the cash just isn't there.

The job has made him go broke. It made him give up a career as a jazz guitarist. And some days, it requires him to take grown men outside for walks after they've thrown puzzles in frustration.

What he gets in return - what he calls the "gift" that's been given him - is contentment.

"I'm willing to lose everything to get just a little bit of what life is," says Gilliam, 52. "When you just start helping people, that's when your life begins."

By that measure, Gilliam's life began seven years ago, when he opened Creative Identity, seeking to use his musical talents to reach into the hearts of those with autism, Down syndrome and mental retardation. The nonprofit program uses arts - music, painting, drawing, dance, ceramics - to draw out adults unable to live independently.

"We find out what they're good at, then we use that to get them to open up and to function in the community," he says. "It encourages them to step out and take more chances."

Why do this? Maybe because he sees a little of himself in the faces of the 24 adults here, some rocking, some chanting, some singing with eyes closed.

Born in Clarksdale, Miss., Gilliam remembers the "coloreds" and "whites& #34; signs around town, remembers having to sit upstairs at the movies, not even allowed into the lobby to buy popcorn.

"People with disabilities are basically ostracized," he says. "When I look at them, I see them as in the same situation as myself, meaning that people judge them before they know them."

Gilliam was influenced by a high school history teacher who worked with the Rev. Martin Luther King Jr. and by jazz singer Oscar Brown Jr., who did a lot of work with gangs in the late 1960s.

"It always impressed me," Gilliam said. "If you knew what you were doing with music, you could bring the best out of anybody. That's what really made me get into music therapy."

Gilliam earned a bachelor's degree in music from Xavier University in New Orleans, then moved to Los Angeles in 1982, where he played music full- time. But it wasn't until he married in 1986 that he saw what was missing in his life as a musician.

"I did the things most musicians do," he says. "Even successful musicians, they sacrifice family and friends. But that's something I wanted. I was willing to give up whatever I had to get that - family and friends, and to be part of a community."

So, he enrolled at California State University, Long Beach, and in 1992 earned a degree in music therapy. He worked three years at Hope University in Anaheim, considered the first institution to use fine arts as therapy for developmentally disabled adults. That's where he met Joaquim Dixon, an obsessive young man who chanted, covered his ears and stared at record albums spinning around and around.

Dixon, 37, remembers the day with a clarity common among many with

autism: "It was April 1992," he says. "You were wearing a polka dot shirt, green and beige dots."

Gilliam was able to connect with Dixon somehow, to bring out the perfect-pitch, masterful singer inside, and more: to bring out emotions in a way Dixon had never displayed.

"His mother said, 'Wherever you go, he's going,' " Gilliam says. "For whatever reason, he opened up to me. That is part of what turned me around too."

When Gilliam launched his own arts-based program in 1995, he did so with just one student: Dixon. Today, there are 24, and Dixon leads the group of singers known as The Pride, who perform regularly around the county. Dixon works out all harmonies and teaches them to others, one of whom laughs uncontrollably at times, another who has seizures occasionally when they perform, and another who is blind and autistic and can recite "The Wizard of Oz" from beginning to end.

Before she died in 2001, Lavinia Dixon said of Gilliam: "He's a diamond cutter. I always knew my son was a diamond, and a diamond is a lump of coal that's good under pressure."

She watched her son grow under the tutelage of Gilliam, to the point where he sang "You Are So Beautiful" to her - an expression of emotion she'd never seen before. He sang the song to her a second time at her funeral, accompanied by Gilliam on guitar.

It's progress like that that drives Gilliam on.

"Once you give yourself to helping someone, you find your humanity," he says. "You become a part of the whole world. I feel a part of the community, a part of everyone. That's the gift that's given back."

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Autism Resources

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TREATMENT / CARE

An Answer To Autism in Massachusetts

Parent Advocacy opens school

Julianna Berry was at her wit's end the day she pulled into the parking lot of Crossroads Center for Children near Albany, N.Y. It was October 2000 and Berry, then 26 years old and the mother of two out-of-control and recently diagnosed autistic children, was desperate.

Struggling to corral Joseph, 4, and Daniel, 2, while clutching her newborn son Adam, the short walk into the school building took nearly 15 minutes. The boys entered the lobby and took off screaming and running.

"These were kids that I loved, but almost didn't like anymore," said Berry. "I'm-sorry-about-my-kids-behavior was my constant demeanor."

Helen Bloomer, director and founder of the center that treats children with diagnoses on the autism spectrum including Asperger's Syndrome and Pervasive Developmental Disorder, warmly greeted the young mother. Bloomer didn't bat an eye at the whirlwind of Berry boys.

"Helen just watched them and calmly said 'We can fix that,'" said Berry, who then toured the center where autistic children came up to Joseph and invited him to join their play. "And for the first time I began to have hope."

That hope turned into reality as Berry watched the rapid progress Joseph and Daniel made in the program. Their tantrums, and behaviors like Daniel's habit of banging his head on the wall, lessened.

Daniel, who had no speech at two years old, began to say words, and Joseph began creating sentences on his own where before he could only mimic sentences he had heard someone else say to get what he wanted. Both boys began developing more appropriate social skills.

Bloomer, a board certified behavior analyst and president of the New York State Association of Behavior Analysts, opened the Crossroads school in 1998. Her philosophy is that autism can be treated aggressively to help developmentally disabled children achieve some independence.

The approach, known as Applied Behavior Analysis (ABA), was such a lifeline that when Berry moved to Maynard in 2001, and had trouble finding a nearby facility with space for her children, she began lobbying Bloomer to open a school in Massachusetts. The two older boys were enrolled in the Maynard Public Schools while Berry worked with the special education experts in the district to find an ABA program in the area. Programs she liked had long waiting lists or were very far from home.

"We didn't know until we left how good Crossroads was and that Helen's success rate was so impressive," said Berry. "I saw there was a gap, not just in resources and expertise, but geographically. Right here in the Maynard, Acton, Sudbury, Stow area there wasn't anything."

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BC Canadian Parents Battle for Treatment Program

MLA denies parents' claim Liberals changed tune on funding for autistic children

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A Squamish family is looking for answers from their MLA on what they see as a flip-flop by the B.C. Liberals on funding for autistic children — including their son.

But more than that, they're just hoping to hear from Ted Nebbeling.

Dan and Jenn Geddes's son, Jaiden, was diagnosed with autism in 2001.

"Autism is a life sentence," said Jenn. "It's like someone comes in and steals your baby's soul."

When Jaiden was diagnosed, he had no receptive language (to indicate what he understands) or expressive language and was indifferent to others, usually ignoring them as if they were not there.

But last spring, Jaiden started an intensive therapy program called Applied Behavioural Analysis (ABA). The therapy, which takes place in the Geddes' home 35 hours a week, has led to major improvements in Jaiden's behaviour, according to Jenn.

"Ten months ago Jaiden was not able to understand any language," she said. "Now, he is able to identify hundreds of objects and actions, body parts, shapes, colours, familiar people and simple instructions.

"It's really helping. It's going slowly, but it's working."

The key to ABA's success is starting it while children are young (ideally before age five) and ensuring the therapy is intensive (35 to 40 hours a week). Nearly half of children in ABA therapy recover enough to interact relatively normally with other children.

In Jaiden's case, they hope to bring him into kindergarten this fall — something that wouldn't even have been possible a year ago. "We want him to be there to interact," said Jenn.

The cost of intensive ABA is staggering — up to $60,000 a year — and is currently only partially funded by the provincial government for children up to age five only.

In the Geddes' case, they're paying about $45,000 a year for the therapy, with about $20,000 covered by the provincial government.

Jenn works full-time and Dan owns his own business, but the cost of treatment has still forced them to cash in their retirement savings and seek help from their families. The couple is looking at selling their house next spring to continue the treatment.

When Jaiden turns six in November of this year, the government funding is cut off completely — yet he requires another three to four years of therapy, says Jenn.

But what has the Geddes most upset is what they call the Liberals' change of heart on funding from when they were in opposition and their MLA's silence.

Parents of autistic children filed a class action lawsuit, Auton et al., in August 1999 to force the then-NDP provincial government to fund ABA treatment. The B.C. Supreme Court ruled in the parents' favour in July 2000, but the government appealed to the B.C. Court of Appeals on the grounds that the courts should not determine government funding of programs.

At the time, Liberal opposition politicians, from soon-to-be premier Gordon Campbell to Colin Hansen, now Minister of Health Services, castigated the NDP for appealing the case.

West Vancouver-Garibaldi MLA Ted Nebbeling was also vocal on government funding for autism while in opposition. In 1998, he presented a petition signed by more than 8,000 parents to the Premier on behalf of Families for Early Autism Treatment (FEAT). At the time, the government provided no funding for ABA.

"I am appalled with the lack of government understanding of a program that has been proven to help these children," Nebbeling said at the time. "To deny children a quality of life otherwise unattainable, condemning them to a life sentence in an institution, this is a negligence which should be considered criminal.

"How can we deny a child our help, when we know a proven treatment method?"

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After-School Program For Autistic Children in Boston

otes02072003.htm

Boston Families for Autism Inc. started a new after-school program in Roslindale for autistic children living in Boston. This new initiative was started by two mothers, Donna McCoy-Algere and Cynthia Greene, with autistic sons. Boston families with autistic children didn't have any appropriate program to send their children after school. The program is for autistic and typical children, ages 6 through 12 years. The hours are 2 to 5:45 p.m. Activities include music and movement therapy by The Boston Institute for Arts Therapy.

The program has been funded by the Department of Mental Retardation, The Genesis Fund, The Doug Flutie Jr. Foundation for Autism, The Greater Boston Association for Retarded Citizens. Century Bank, Boston Private Bank & Trust Company. BFA recently was awarded the Community After-School Initiative grant for $40,000 to increase the capacity of children at the after-school program. The grant is funded by Boston's After-School for All Partnership. The members are an anonymous family foundation, The Boston Foundation, the city of Boston's 2-to-to-6 After-School Initiative, The Hyams Foundation and the United Way of Massachusetts Bay.

The grant is managed by Parents United for Child Care. BFA strives to provide local quality services for inner-city families who have children with autism. BFA is a grass-roots, non-profit organization formed in 1999.

There are slots available. Call BFA at 617-327-9486 to register children in the program.

_______________________________________________________

>> DO SOMETHING ABOUT AUTISM NOW <<

Subscribe, Read, then Forward the Schafer Autism Report.

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PUBLIC HEALTH

In Scotland, Parents Have Safer Vaccine For Kids - But If They Don't Ask for it, they will receive the cheaper jab containing mercury.

Doctors have been told to come clean about Infanrix, the safer whooping cough jab available on the NHS - but only if directly challenged about it by parents.

The compromise means that parents who ask no questions will have their children injected with the cheaper DTwP jab laced with ethyl mercury - a substance ordered out of US medicine on health grounds.

The deal was met with political outrage yesterday as Scotland’s opposition parties accused the Scottish Executive of skirting around its duty to give parents the full facts about vaccination options before going ahead.

Dr Andrew Fraser, Scotland’s deputy chief medical officer, has written an "urgent message" to Scottish medical specialists alerting them to fears around thimerosal, a controversial vaccine preservative 50 per cent composed of mercury.

The substance is contained in DTwP, the £10-a-shot jab from France which protects against diphtheria, tetanus and pertussis, or whooping cough, routinely given to all babies aged two, three and four months.

Its rival is Infanrix, a UK vaccine available on the NHS to the few parents who know to ask for it by name. It is almost twice the price because it comes without the so-called "junk cells" suspected of giving children fever after injection.

It is also made without thimerosal - and is the type of vaccine routinely used in the United States, Canada, Japan, Australia and South Korea.

"Parents are entitled to know if thimerosal is contained in the vaccine available to them," Dr Fraser’s letter said. "They should be aware of the reason for this - ethyl mercury is an essential component of the most effective vaccine available to protect children."

The Executive explained that this "entitlement" only extends to parents who ask if they have an alternative. Those who do not will be given the mercury vaccine.

"The DTwP is recommended, because it is more effective. So that is the one which is given. If parents were to ask a question, for whatever reason, they would be told everything - about the choice, the side-effects, whatever they wanted to know."

The Scotsman revealed yesterday that babies injected with the cheaper DTwP vaccine are ten times as likely to suffer side effects ranging from fever to periods of unusual crying lasting more than an hour.

In a Holyrood debate yesterday, Frank McAveety, Scotland’s deputy health minister, admitted that Infanrix does have "lower levels of side effects" - but said it was less effective.

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

CALENDAR EVENTS@doitnow.com Michelle Guppy Ron Sleith

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