FEAT DAILY NEWSLETTER Sacramento, California

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

AWARENESS

* Stars 'CAN-do' About Defeating Autism

* Autism's Mysteries Unlocked

* Autism on TV and Radio for Autism Awareness

RESEARCH

* Functional Analysis Of Stereotypical Ear Covering

* A Prework Assessment Of Task Preferences Among Adults With Autism

* Increasing Social Initiations In Children With Autism

Stars 'CAN-do' About Defeating Autism

Many actors struggle for years in obscurity searching for that breakthrough role that gives voice to their talent. For children and adults diagnosed with autism that struggle with isolation is lifelong.

The goal of the recent Facing Autism fundraiser in Silicon Valley is to defeat that isolation by raising awareness and research funding for this profound developmental disorder.

"At the heart of it a number of people from different industries get together and raise money for Cure Autism Now (CAN) and celebrate a united front," says Gil Bellows, who now stars in The Agency. "I think everybody who is involved is in some way touched by autism —- either directly or through friends whose children are autistic."

Attending the fourth annual event were Silicon Valley executives and Hollywood notables, including: Rene Russo, Anthony Edwards, CSI's George Eads, ER stars Moira Tierney and Laura Innes, as well as The West Wing's Brad Whitford and NiCole Robinson.

"Being a seventh grade school teacher before acting, I came in contact with a couple of these kids," says Eads." It's really obvious they need special care and attention. They're beautiful children that need care and love, and that's what this is about."

"I have a good friend whose brother is autistic," says Robinson. "When I went to this event last year and saw what they were doing I said, 'just tell me what to do.' Awareness is key, so people understand what autism is and how many are really affected by it. And of course, money helps."

In fact, although autism research is under funded it is not for lack of subjects. According to CAN, the neurological disease occurs in one in 500 births. That makes autism the third most common developmental disease trailing only mental retardation and cerebral palsy.

Vocal lessons

But the very nature of autism has denied the disease a voice, and in funding research speaking up loudly and often is key.

"No beloved celebrity will ever develop this," notes Whitford, "and unfortunately that's the way a lot of things get funding. Every election cycle we hear how everyone is for kids, but kids have no hard money, no soft money, and they don't vote. My dream is to give a voice for kids who can't say it for themselves."

The person with autism is usually the least able to express what the disorder is. They may never or rarely speak, can be withdrawn or distant, and lack social skills.

"It's as if they do not understand or are missing a core aspect of what it is to be human; to be and do like others and absorb their values," says psychologist Bryna Siegel, director of the Autism Clinic, University of California, San Francisco. "Their worlds are more barren, their social world is very distorted, and they come out of their world not when you want them to, but when they want to."

As a result people with autism are usually misunderstood. The best-known public example of autism remains Rain Man.

"Initially I only knew of people who were labeled as being severely on one end of this spectrum," says Bellows, whose manager has a child with the disorder.. "Being completely unable to communicate seemed the biggest curse in life —- not being able to communicate in any way that would coincide with the feelings inside yourself."

"But thanks to committed resources, scientists, and families, inroads are being made," adds Bellows. "It's unfortunate that these inroads allow us to see how complicated the human body is, because if it were simple we might be a little closer to a cure."

Simple explanations about the origins and reasons for autism have been popular, but often inaccurate.

"25 years ago if your child was diagnosed with autism it was supposed to be some psychological problem coming from the parent," explains Whitford. "Turns out there is a genetic element to this disease."

But in the 1950s psychiatrists like Bruno Bettelheim believed autism was a rare emotional disorder caused by trauma or bad parenting. This mistake not only created a culture of mistrust between families and scientists, but delayed essential research.

Siegel challenged that theory when she was one of Bettelheim's grad students —- only to see it replaced in popular culture with other simple

explanations: Measles vaccine, mercury in tooth fillings, and unknown environmental factors.

But the research funded in part by CAN has led to more scientific investigation and findings.

"It's clearly genetic in origin," says Siegel, who authored The World of the Autistic Child.

"That's difficult for many people to accept," explains Joseph Buxbaum, associate professor at the Mt. Sinai School of Medicine. Buxbaum's exhaustive CAN-sponsored research helped firmly establish that genetics play a role in susceptibility. "They may think it reflects on them in some way, which is kind of sad."

Autism is not the simple one-gene/one-disease cause-and-effect seen in many other genetic conditions. It's likely that as many as 20 or so genes may play a part in autism.

For the type of massive computer comparisons and analysis necessary to sort out 20 or so suspected genes in autism, and their possible interplays, significantly more time and money are needed. CAN is helping accelerate this timeline by prompting shared research.

And computers and computer "geeks" may hold the key is solving the autism puzzle.

Silicon Valley autism

Genetic arguments have particular cache in Silicon Valley, bolstered by recent marked increases in the birth of children with autism and a milder related form called Asperger's syndrome. Investigative reporter Steve Silberman broke this disturbing trend in Wired Magazine late last year.

And that makes the Facing Autism event potentially more powerful than ever. High-functioning people with mild autistic traits find the mechanical precision of computer programming a welcome one because they often thrive on tasks that demand order and continued close attention.

They may read, create, and decipher complex computer language more easily than unravel the subtle social cues and facial expressions most of us learned to read in early childhood.

Concentrate these "computer geeks" who may have a few of the 20 or so autism genes in a tight geographical area and they'll be far more likely to meet others just like them and raise children —- explaining the area's rise in Asperger's disease. At least in theory.

In short, the very people who rule Silicon Valley may have a dedicated workforce that involves autistic abilities and disabilities, the interest to back research, and the collective computing and programming power to accelerate genetic research to new levels.

"If more people understood how close they were to finding out what causes this, they'd be more likely to jump in and provide more money," says Robinson. "All these possibilities make Silicon Valley pretty exciting and a very encouraging place to be for this event. We are getting closer to a cure, and that will really be something."

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Autism in TV Drama

A reader writes in to alert us that a new show, " The Shield" on channel FX, which started about 4 weeks ago, has an autism aspect. The main character's son was just diagnosed with autism in last night's episode. He is about 4 years old. "I believe it is getting very high ratings for a cable show," writes the viewer, "and the critics love it!" So great publicity for autism.

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Newport Hits the Air

[Jerry Newport sends in this media alert.]

As part of Autism Awareness activities, I will be on the Radio: KQDS 8AM CST, 4/9 with Jason Manning (Duluth, MN) Alabama WABP with Ron Frasier on Weds between 8 and 9 AM CST 97.5 FM and 1480 AM Friday, April 12th, 8:05AM CST WCRA in Essingham, Illinois If anyone wants to hear us in your area, tell your favorite station to call Future Horizons and arrange it 1-800-489-0727.

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Unlocking Autism on the Radio in Buffalo

Friday, on radio station WJTN 1240 AM there will be a radio talk show about Autism. Expected speakers are to be Rebecca Rosen Unlocking Autism NY State rep, Shelly Reynolds and a list of others. You can additionally listen on the web if you cannot pick up local broadcast...Please feel free to email the station as well.

1:00 to 3:00 pm

Buffalo, NY WJTN RADIO 1240 AM

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Even if You're Not Going to the Power of One! Rally…

…You can still play an important part. Once again, things are down to the wire and Unlocking Autism can use your donation.. Send what you can to:

UA Headquarters

P.O. Box 1086

Baton Rouge, LA -70821-1086

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Autism's Mysteries Unlocked

Parents receive some long-awaited answers with help of new center at Children's Hospital

Raymond Fox bit his dog's tail. Later, without saying a word, he pulled down his pants in front of a couple of strangers.

And this was a good day for the 5-year-old boy.

For years, his mother, Cam Jellison, knew Raymond was different from other boys his age. But no one would tell her why.

"We didn't want to label him, either," Jellison said. "But we wanted to know what to do."

Now, Jellison, who lives in Stow, and other parents throughout the region with similar questions are getting some long-awaited answers at the Autism Center at Children's Hospital Medical Center of Akron.

Raymond is one of about 50 children who have been brought to the center since it opened last year. The center is a joint project between the hospital and Akron's Blick Clinic, which provides services to people with developmental disabilities.

For reasons no one knows, autism and other related developmental disorders are being diagnosed more frequently here and nationwide.

The Autism Center is just one example of how health-care providers, government agencies and schools are responding.

"I think we're constantly trying to evolve what will make sense for individuals and their families," said Gregory L. LaForme, a psychologist and executive director of the Blick Clinic.

It's not known exactly how many children have autism nationwide, but experts generally agree that as many as one in 500 have some form of the disorder. Statewide, the number of people ages 6 through 21 identified by the Ohio Department of Education as autistic jumped from 22 in 1992 to 2,858 this school year.

Greater awareness and recent changes in the criteria used to diagnose the disorders most likely have contributed to the increase in cases.

Autism is an often-misunderstood disorder that affects the brain's normal development in three key areas: social interaction, communication and behavior. Early diagnosis is critical.

Autistic people "need to have a jump-start on how it is they can effectively engage their world," said David L. Holmes, a psychologist and chairman of the panel of professional advisers for the Autism Association of America. Holmes runs a service center for autistic people of all ages in New Jersey.

"When it comes to autism," he said, "it is not just another disorder. It's a highly unique disorder."

Autism Center team

The Autism Center at Children's Hospital coordinates a patient's appointments with a team of experts, including a developmental pediatrician, a social worker, a psychologist from the Blick Clinic, a genetic counselor and other health-care professionals.

The team members meet to discuss the case, reach a diagnosis and come up with recommendations that Dr. John Duby, the center's director, later shares with the parents.

"We're really trying to take a good look at the child," said Duby, who also serves as director of developmental and behavioral pediatrics at Children's Hospital.

Before the center opened, parents from the 17 counties that Children's Hospital serves sometimes had to juggle these appointments themselves.

"Now they can come to one place and get it all together," Duby said. "We offer to follow these kids. We don't just see them for this one short evaluation and then just drop the ball."

In Raymond's case, his mother had been asking doctors about what was causing his lack of speech and unusual behavior since before her son turned 2. Doctors kept telling her to give Raymond time.

"We couldn't wait anymore," Jellison said.

After Raymond made several visits to the center last summer, the team determined the boy had mild to moderate mental retardation and pervasive developmental disorder, a variant of autism.

Center personnel helped come up with a plan to wean Raymond off his seizure medication, which was causing him to be drowsy and less attentive, Jellison said.

Raymond's mother and stepfather, Bryan Jellison, also consult Duby for advice on a special education program at Indian Trail Elementary in Stow.

Officials at the center said appointments usually are covered by health insurance. However, that wasn't the case for the Jellisons, so they've had to pay more than $1,000 out of pocket for Raymond's appointments.

"At this point, we really don't mind doing the extra work to pay for this," Cam Jellison said. "It's worth it."

Diagnosis difficult

As the Jellisons have learned all too well, diagnosing autism and related disorders can be difficult. No two children with autism are exactly alike, and other disorders can mimic some autistic tendencies.

With an autistic child, speech might be absent or delayed. Words might be used repetitively -- sometimes without their usual meaning. Ritualistic mannerisms, such as rocking, spinning or finger-flicking, are common. Pretend or symbolic play is often absent. Frequently, there's little awareness of other people or of their feelings.

For unknown reasons, the majority of children with autism are male.

An estimated 60 percent to 70 percent of those with autism suffer from some degree of mental retardation, a factor that can complicate the diagnosis.

Only about 10 percent are savants, meaning they show incredible skill in areas like music, calculation or memory -- the image of autism popularized by Dustin Hoffman's character in the movie Rain Man.

Of the 50 or so children who have been referred to the Autism Center, fewer than half actually had autism or a related disorder, Duby said. Others had language disorders, genetic disorders or other developmental problems. Two children had developmental problems caused by neglect.

"I think the surprising thing is the percentage of folks coming in for something else," the Blick Clinic's LaForme said. "And that may account, in some respect, for what some people perceive as the increase of autism."

At least two hospitals in Cleveland, the Cleveland Clinic Children's Hospital for Rehabilitation and Rainbow Babies and Children's Hospital, also offer autism services.

More work needed

But advocates say even more needs to be done to help these mysterious, disconnected children and their families.

"The hope is we're going to be able to develop closer relationships with the educational programs that are serving these families and kids," Duby said.

Indeed, a diagnosis is just the first step, said Dr. Max Wiznitzer, a pediatric neurologist and head of the autism center at Rainbow Babies and Children's Hospital.

"We have to look at the bigger picture, which is making sure there's good, coordinated intervention for this population," Wiznitzer said.

Steps slowly are being taken to reach that goal.

The Ohio Department of Education's Office of Exceptional Children, for example, is using $1 million in federal money to fund 26 projects statewide aimed at identifying, evaluating and supporting successful programs for autistic children.

The nine-month grant, which started in December, includes coverage of projects headed by four school districts in the Akron-Canton area: Buckeye Local, Cuyahoga Falls, Louisville and Revere Local.

"You go through an evaluation for a few hours in some center," Wiznitzer said, "but the number of hours you spend in school in one week eclipses the amount of time you spend in the center. That's what's going to have the greatest impact."

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Functional Analysis Of Stereotypical Ear Covering

in a child with autism.

ds=11936553&dopt=Abstract <-- address ends here.

Tang JC, Kennedy CH, Koppekin A, Caruso M. Vanderbilt University, Nashville, Tennessee 37203, USA.

We studied stereotypical ear covering in a child with autism. Results of a descriptive analysis were inconclusive but revealed a correlation between ear covering and another child's screaming. An analogue functional analysis showed that ear covering was emitted only when the screaming was present.

PMID: 11936553 [PubMed - in process]

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A Prework Assessment Of Task Preferences Among Adults With Autism beginning a supported job.

ds=11936551&dopt=Abstract <- - address ends here.

Lattimore LP, Parsons MB, Reid DH. Western Carolina Center, USA.

A prework paired-task assessment was evaluated for identifying work preferences among 3 adults with autism beginning a supported job. When the workers began the job, choices were provided between more and less preferred tasks (determined by previous assessment).

Results supported the assessment for identifying single task preferences, but did not reveal preferences of 2 workers for alternate tasks. Results are discussed in terms of evaluating other prework assessments that may reveal task-alternation preferences.

PMID: 11936551 [PubMed - in process]

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Increasing Social Initiations In Children With Autism:

effects of a tactile prompt.

ds=11936550&dopt=Abstract <- - address ends here.

Shabani DB, Katz RC, Wilder DA, Beauchamp K, Taylor CR, Fischer KJ. Department of Psychology, University of the Pacific. danny.shabani@wmich.edu

An ABAB design was used to assess the effects of a tactile prompting device (i.e., a vibrating pager) as a prompt for the social initiations of 3 children with autism during free-play activities with typically developing peers.

Results indicated that the tactile prompt was effective in increasing verbal initiations for all 3 children, and responses to peers' initiations were higher for 2 participants when the tactile prompt was used. Efforts to reduce the frequency of prompts while still maintaining rates of initiations were partially successful for 1 participant.

PMID: 11936550 [PubMed - in process]

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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

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