FEAT DAILY NEWSLETTER Sacramento, California

"Healing Autism: No Finer a Cause on the Planet" ________________________________________________________________

AWARENESS

* Drawing Her Out

RESEARCH

* UCLA Neurologist Awarded $6 Million to Search for Autism Genes

* Different Parts Of The Brain Handle Fantasy And Reality

* Study Says Hyperactivity Drug Can Be Added to Food

TREATMENT

* Backpack PC Helps Disabled Children

ADVOCACY

* Seeking to Contact Independent Autism Advocacy/Support Parent Groups

PUBLIC HEALTH

* Drop in UK MMR Jab Uptake

* Reader's Posts

Drawing Her Out

Autism: Teen-ager's struggle to communicate has been a family affair.

[By Tony Simmons in The News Herald.]

The world and all its mystery is opening for Camille Butchikas - or more accurately, Camille is slowly unfolding to the outside world like a butterfly from a chrysalis.

For years, the 14-year-old Panama City Beach resident was non-verbal and "tactile-defensive." She wouldn't speak, wouldn't respond to others' speech and couldn't stand the touch of anything against her skin.

She would pour out shampoo bottles to try to keep her parents from washing her hair. She'd strip off her clothes as soon as they dressed her.

Doctors said she was autistic, a psychological and physiological condition characterized by a seeming disregard for external reality.

"The hardest thing is to get them to talk," said George Butchikas, Camille's father. "Most of them won't do it because it's too hard for them to process it."

Autism impairs one's ability to communicate and form relationships with other people, and usually becomes apparent within the first few years of life. It also can affect how one responds to sights, sounds and other sensations.

Some children with the disorder are mentally impaired, but about one third are "high-functioning" - meaning they have a normal or near-normal IQ.

Recently reported research by the Medical College of Georgia in Augusta shows that people with autism have more signal-receiving brain structures than those without the disorder. This may cause them to "be overpowered by the amount of information" coming into their brains, and could explain some abnormal behavior - such as a reluctance to look others directly in the face.

Dr. Manuel F. Casanova, lead author of a study published in the Feb. 12 issue of the journal Neurology, said it's possible autistic people look away to keep from being overpowered by information they receive when they look at someone eye-to-eye.

"The key is early intervention," George said. "When the child is 3 or 4, the success rate is way up there. And the parents have to be dedicated. It's so easy to let the child do inappropriate behaviors rather than correct them."

Camille at 14 is a vastly different child from Camille at 3 - her age when doctors diagnosed her disorder.

Today, she can talk about almost anything. She creates fanciful artwork and attends mainstream middle school classes. She enjoys Judy Blume novels. She washes her own hair and picks her own clothes - and even has a favorite pair of Gap flair-leg jeans she would wear every day if her mom, Carolyn Cruise, would let her.

"Her biggest improvement has been her verbal skills and communication," Carolyn said. "She had a 10-word vocabulary when she was about 5 years old. Now, her vocabulary is unlimited."

But make no mistake: Camille is no less autistic than before. She still has problems communicating. Living outside her cocoon is the result of years of therapy and struggle on her part and that of her parents.

OUT OF HER SHELL

In 1990, 3-year-old Camille began behavior modification therapy under the care of graduate students at the Lovaas Center at the University of California at Los Angeles.

"They were instrumental in starting to get her to make eye contact, focus and respond to other people," George said. "They also teach the parents how to communicate with an autistic child. ... Some people just can't do it. They don't have the assets or the time, or it's just too hard to do."

In 1992, Camille went to the Auditory Integration Center in Portland, Ore., for 10 days of "re-tuning" her inner ears. She had to wear headphones that exposed her to every pitch in the spectrum of human hearing.

"They had speech, occupational therapy and sensory integration - rubbing the skin, movements on a mat, working on coordination and stimulating her," George said. "She is living proof of what can be done for autistic children with early intervention and therapy. We know that this works."

"She didn't like speech therapy," Carolyn said. "She used to say, 'Oh no, not speech again.'"

And don't ask Camille about her routine. She'll say, "I can't remember."

Camille's day is structured, her schedule very strict. She's in bed by 9 p.m. and wakes on her own at 6 a.m. Her parents even keep her in summer school each year to maintain the school-day regimen.

"It's a seven-days-a-week, 24-hours-a-day, 365-days-a-year commitment in the early stages," Carolyn said.

Carolyn has been with George for nine years and has raised Camille like her own daughter. When she and George first started dating, Camille still didn't speak. Now, Camille calls her "Mom."

"I've seen her come a long way," Carolyn said. "She's learning to play the piano now."

Carolyn doesn't believe in using drugs to treat autism. Structure, commitment, discipline and love can do the job, she said.

"I won't let anybody put her on any kind of medication," she said. "The medicine she takes is vitamin therapy, B6 and magnesium. No Ritalin. She can be a typical teen, and we don't have to put her on drugs."

Back when Camille was still refusing to speak, Carolyn made a habit of asking Camille what she'd had for lunch at school. Carolyn would repeat the same question over and over, day-in and day-out.

Finally, one day, Camille yelled an answer: "Hot dog!"

"It was like a breakthrough," Carolyn said. "She knew then that we weren't going to give up on her."

TAKING FLIGHT

Camille is on the A-B honor roll at Surfside Middle School, where she attends mainstream eighth grade classes for most of the day. She has two "varying exceptionalities" classes in language and science, and she has a full-time aide who helps her stay on task.

"She was the first autistic child mainstreamed in Bay County schools," George said. "They kind of rolled the dice with me. If it didn't work, we would have taken her out - but it took off."

Camille's favorite subject is art. She enjoys painting, and she likes to sketch teen-age characters in sassy fashions and poses straight out of Japanese-style cartoons. Her goal is to publish a book of her art and have it adapted to film. She calls the project "Camille's Japanimations."

"It's my idea out of my mind," Camille said. "It has romance, martial arts, magical girls, adventure, action, horror and comedy. No sexual situations. No crude language."

Carolyn was concerned as each school year started that this year the children would not be as nice to Camille as they had been in the past. That didn't happen, however.

"They've always been very supportive," Carolyn said. "It's just that the gap (between her interests and those of her classmates) is broader now in the past two years."

Camille didn't want to talk about her schoolmates. Sometimes they treat her like "a baby," she said, or they act like she's "a crazy girl."

The topic made her uncomfortable. She got out of her chair and paced. She started talking about her animation plans instead. She likes "wacky monsters" like Pokemon and Digimon, she said. Pikachu is her favorite.

"I can draw any person or animal," she said. "I would create hairstyles, eye colors, clothes, dresses and skirts. Kid shows, not just Loony Toons."

Carolyn returned to the topic. As Carolyn talked, Camille picked up a broom that had been leaned against a wall and began twirling it.

"In first through sixth grade, she had a very close network of friends," Carolyn said. "They used to fight to sit by her and fight to see who could come to her house. Now they've moved on to boys and makeup, and Camille is still working on art and the computer."

This summer, after she turns 15, Camille will tackle a challenge many teens relish: her first summer job. George will put her to work at his restaurant, Angelo's Steak Pit in Panama City Beach, and Camille will get a checking account and start buying her own art supplies.

Her response: "Oh, brother."

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* * *

UCLA Neurologist Awarded $6 Million to Search for Autism Genes

Dr. Daniel Geschwind, UCLA assistant professor of neurology, has received a five-year, $6 million grant from the National Institute of Mental Health to expand scientific and community groups' efforts to identify the genes that cause autism.

Geschwind and his UCLA colleagues will direct the project, in partnership with the citizens' group Cure Autism Now, to add 300 more families to Cure Autism Now's Autism Genetic Resource Exchange (AGRE) gene bank. They will share the information and samples gathered in the study with the research community through AGRE and a repository maintained by the National Institute of Mental Health Human Genetics Initiative.

"This project will break frontiers in the scope of its collaboration and data sharing with the entire scientific community," said Geschwind, a member of the Center for Neurobehavioral Genetics at UCLA's Neuropsychiatric Institute. "We hope it will also create a promising model for other genetic studies, in order to speed identification of important genes and unlock the mysteries of autism and other devastating hereditary disorders."

The Cure Autism Now Foundation created the AGRE gene bank in order to advance genetics research on autism. AGRE collects DNA samples and clinical data from families with more than one member diagnosed with one of three genetically related diseases: autism, pervasive developmental disorder (PDD) and Asperger's syndrome.

Autism begins in early childhood, impairing thought, feelings, language and the ability to relate to others. While its causes and effective treatments have eluded science, evidence suggests that the disorder is highly heritable. Researchers suspect the disease stems from interactions among multiple unknown genes - complicating the challenge to pinpoint its origin. Recent genome scans have identified several chromosomal sites that may harbor genes possibly predisposing individuals to the disease.

Geschwind is director of UCLA's Neurogenetics Program - a group of clinical scientists and neurologists who apply molecular genetic methods to understand the basic mechanisms of neurological disease and to care for their patients.

His collaborators include Drs. Stanley Nelson, Rita Cantor and Kenneth Lange from UCLA; Dr. J. Conrad Gilliam from Columbia University; and Drs. Christa Lese and David Ledbetter from the University of Chicago.

* * *

Different Parts Of The Brain Handle Fantasy And Reality

The ability to recognize objects in the real world is handled by different parts of the brain than those that allow us to imagine what the world is like. That is the result of a brain mapping experiment published in the March 28 issue of the journal Neuron.

The study focused on two cognitive tasks widely used by experimental psychologists. One is mental rotation – mentally rotating a complex object into a different position to compare it with a second similar shape – and object recognition – determining whether two complex objects are the same or different.

“Mental rotation and object recognition are indistinguishable from a behavioral viewpoint: You can’t tell them apart,” says the paper’s first author, Isabel Gauthier, assistant professor of psychology at Vanderbilt.

“As a result, the field has been deadlocked over the question of whether the brain uses the same mechanism or different mechanisms for the two tasks.” Michael J. Tarr, one of the paper’s co-authors and professor of cognitive and linguistic sciences at Brown University, had proposed in several papers with Steven Pinker at the Massachusetts Institute of Technology that the same mechanism must be involved in the two tasks.

“There are parts of our brain that are involved in our ability to imagine the world,” he says.

“The question is, ‘Are those the same as the parts of the brain that we use to know what things are?’ And the answer appears to be, ‘No, they are not.’”

+Article continues at:

* * *

Study Says Hyperactivity Drug Can Be Added to Food

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Reuters Health - A medication commonly used to treat attention-deficit/hyperactivity disorder (ADHD) may be safely taken in powder form without compromising any of its beneficial effects, according to the results of a small study.

Metadate, a once-daily treatment for ADHD, may be taken by sprinkling the contents of the capsule onto food. And because the drug provides a day's worth of medication, children taking Metadate can avoid the social stigma of leaving the classroom to take medication, researchers suggest.

The findings are good news for the millions of people who have trouble swallowing pills or capsules, particularly children. An estimated 4% to 12% of school-age children experience ADHD, a disorder marked by impulsiveness, difficulty with academic and social functioning and short attention span. ADHD is commonly treated with the stimulant drug methylphenidate (Ritalin), the active ingredient in Metadate.

The researchers report their findings in the April issue of the Journal of the American Academy of Child and Adolescent Psychiatry.

"A controlled-delivery form of methylphenidate...that can be administered once daily and sprinkled on food could help improve compliance in those children who have difficulty swallowing solid dosage forms," Dr. Roy D. Simmons from Rochester, New York-based Celltech Pharmaceuticals, which manufactures Metadate, and colleagues conclude.

In the study, 26 healthy adults without ADHD fasted for 10 hours and then swallowed a Metadate CD capsule or took the medication, containing 20 milligrams of the drug, sprinkled over 1 tablespoon of applesauce. After 6 days of taking no medication, the study volunteers switched treatments.

The researchers took blood samples before volunteers took the medication and again every half-hour to 4 hours over a 24-hour period to measure blood concentrations of the drug.

Blood levels were similar for the two treatments and there were no significant differences in the rate at which the drug was absorbed or eliminated over the course of one day. Swallowing the capsule or sprinkling the contents over food was found to be equally safe and well tolerated. Side effects, such as headaches, were mild, the report indicates.

However, more research is needed into the effects of the powder form of the drug in children, and larger studies are needed to confirm the safety of taking the drug in powder form, the authors add.

SOURCE: Journal of the American Academy of Child and Adolescent Psychiatry 2002;41:443-449

* * *

Backpack PC Helps Disabled Children

A specially designed wearable computer is giving a voice to children with learning disabilities.

The computer, built by the Xybernaut company, has been tested at several schools in the US with promising results.

"Its portability and flexibility allowed Jeremy to communicate and access the curriculum across all school environments with increasing success," said Lisa Zverloff, a teacher at Ohio Coventry Local School District, of one of the children using the computer.

Xybernaut is preparing to market its Xyberkids wearable computer to schools across the US.

PC in a backpack

The idea behind the product was to produce something that the children could carry with them to school and use in everyday life.

So the computer comes in a backpack that includes a rugged flat-panel display, portable speakers and a small processing unit.

"In the US there are six million children with disabilities," said one of the project managers, Richard Walfish.

"We're not going to cure anybody but we're going to help the children," he told the BBC programme Go Digital.

Mr Walfish demonstrated how it could be used for something as simple as placing an order at a fast food restaurant, by pressing icons on the touch-screen.

"For you and me, it is a very simple thing to go and order at McDonalds but for a person that has no ability to speak or limited ability to speak, this for them is a godsend and they can take it wherever they want to go," he said.

Improved behaviour

The teachers testing the Xyberkids computer kit have found it a valuable tool that allows children with learning disabilities to communicate and take part in classroom activities.

They found that the hostile behaviour of some of the children disappeared once they could express themselves through the touch-screen and speakers.

It also helped other pupils accept the children suffering from autism, cerebral palsy or physical disabilities. But the wearable computer comes with a big price tag attached.

The package starts at $4,995 for all the hardware and educational software. But Xybernaut is working with schools to apply for grants to pay for the computer.

"We don't expect the parents to come up with the money," said Mr Walfish.

"But there are funds available from federal, state, local and private organisations and we are working with a company that is providing the ability to get the grants."

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* * *

Seeking to Contact Independent Autism Advocacy/Support Parent Groups

We need to take a census of the independent autism advocacy community. If you are part of a parent group trying to get services for your child, sharing resources, offering support, etc. or know of such a group, please send to this newsletter the group's name, if you have one, an overland mail address and a phone number. This would include any group who has "FEAT" in their name (FEAT doesn't have chapters, there just are other groups who use the name.). We already have some of you listed on the FEAT website, but it is sorely in need of an update. Some autism groups are building a nationwide advocacy network and everyone doing advocacy needs to be plugged in. Contact Lenny Schafer at editor@feat.org before April 15.)

* * *

Drop in UK MMR Jab Uptake

Experts insist MMR is safe, still more than half of GP's surgeries say the uptake of the MMR vaccine has fallen in the last few months, according to a survey for BBC Radio 5 Live.

Following media coverage of controversial claims that MMR may be linked with autism, 48% of family doctors reported parents were less willing to let their children have the vaccine.

The survey reveals that parental confidence in the MMR vaccine has been shaken by recent events although most are still agreeing to have their child immunised.

Researchers contacted more than 300 surgeries around the UK of which 51% reported a drop in take-up of the jab.

The doctors said more parents were asking about the single measles vaccine.

Most were able to persuade them to accept MMR - but 39% of practices said there had been a small drop in the take up of MMR and 11% said there had been a significant drop.

Private jabs

Some parents may have had their children immunised privately with the single measles jab but the drop in MMR coverage will increase the risk of measles outbreaks as well as cases of rubella and mumps.

The good news for the government is that most parents do still seem to be accepting professional advice that the vaccine is safe.

Nearly seven out of ten practices reported MMR take up levels exceeding 90%.

Just three in 100 said take up was below 70%.

Ministers will hope that over the next few months they can begin to build up the numbers of children receiving MMR again.

However, if this does not happen pressure to bring in single jabs is likely to grow even though there is no evidence they are safer than the triple vaccine.

Confusion

Dr Pamela Ashton, a GP in London, said: "The media coverage definitely led parents to be confused.

"In one day I had six telephone conversations about it taking about one hour of my time.

"Personally I fell the way forward is to lay the attention to rest.

"The media have definitely caused more work for health professionals over this. Parents find it difficult to know who to believe."

The safety of the triple jab was first brought into question by consultant Dr Andrew Wakefield, who suggested a link between MMR, bowel disease and autism.

He claimed the Government should allow worried parents to opt for single jabs for their children.

But the overwhelming majority of medical opinion is convinced that there is no link between MMR and autism.

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Reader's Posts

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I am interested in any parent who has had assistance with Tom Weddle of Spokane, WA. I want both good and bad reports. AutismNorthIdaho@aol.com

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I want to thank all those who sent me responses regarding sleep issues for my client. He is sleeping better and they are continuing to investigate things in this regard. Now comes toileting. He sits on his potty chair, knows what it is, etc. He just won't go in it yet. Any suggestions? Rebecca, Autism Therapist in Hawaii Beccasuehi@aol.com

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Have a 3yr. old with PDD-NOS. Local school district will take over all services. Insistant on him starting preschool immediately. I am unsure at this time. Anyone start something similar? Looking for all pros/cons on having him bussed to a preschool for 4-6 hours daily, all year round. Rosemary RodartR@scc.losrios.edu

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Anyone know why autismconnect.com never mentions the "FEAT Newsletter" in their entire database? Why hide away this critical resource for parents? AF? editor@feat.org

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My 6 yr. old grandson only eats fries, pretzels, ice cream, waffles, and these only when he wants them specifically. Mostly he likes fries. We are trying to implement the GF and CF diet but are having a hard time. Does anyone use a protein supplement? Pat Viscosi [patviscosi@hotmail.com]

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Moving to the area close to Tyndall AFB. Could someone please help us out with information on the School District? Also what is available in terms of quality doctors, dentists and services. Tim [carp@gci.net]

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I am seriously considering going to Denver to go through Sensory Learning with my 9 year old, PDD and visually impaired daughter, working with with Mary Bolles (see this months Autism Digest). Has anyone heard any experiences with this therapy, good or bad? Please reply to clownmom@prodigy.net or 954-792-4795. Julie Perez

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APRIL 21, 2002 - 12 Noon to 5pm

THIRD NATIONAL AUTISM AWARENESS RALLY:

"The Power of ONE! I.D.E.A."

FREE and OPEN TO THE PUBLIC

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FEAT'S "Night of Caring" April 27

Sacramento FEAT is holding its' 9th Annual "Night of Caring" Dinner and Auction fundraiser on April 27, 2002. If you have been helped by the FEAT and the Daily Newsletter and would like to show your appreciation you can by supporting our fundraiser. Make an auction contribution or sponsorship donation. Please call 916-843-1536 for more information. Thank you.

FEAT is a tax-exempt non-profit corporation

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