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October 14, 2005

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Publication Date: Friday, October 14, 2005

Autism on the rise Autism on the rise (October 14, 2005)

Experts struggle to understand why disorder is afflicting more and more children

By Diana Reynolds Roome

Six-year-old Katelyn takes a break from sounding out letters to form words, and runs to a small trapeze set up in her family's playroom in Mountain View. She's up on the trapeze in a moment, swinging upside down. With her hair hanging down in bunches and her infectious laugh, this child seems to have nothing amiss in her life.

"She was developing normally until just before her second birthday," said her mother, Teresa Maldonado Marchok, a physical therapist and Pilates instructor who used to be a dancer in the celebrated Martha Graham Company. "She hit all the developmental milestones. Then she lost the language she had. She used to say 'banana,' but then started to point and say 'ga.' She would show no emotion when I left the house. The vacuum and hairdryer sent her into a frenzy."

On the advice of Katelyn's preschool teacher, Teresa Marchok and her husband Tom contacted Early Start, a free early intervention program. Early Start evaluated Katelyn and then directed the family to the Lucile Packard Children's Hospital at Stanford where, at age 2 years 8 months, she was diagnosed with autism.

"Imagine being told your child has a neurological brain disorder and may never be able to speak, function in society, live alone, marry or have children -- your heart sinks," said Marchok, the pain of that moment clearly reflected in her face.

A growing number of parents are facing this experience. Autism spectrum disorders (ASD) have increased so rapidly over recent years that school districts are struggling to accommodate children who require intensive, individualized education plans and special care. Whereas in 1970 1 child in 10,000 was diagnosed with autism, now 1 in 166 is manifesting the symptoms, according to the Centers for Disease Control, and boys outnumber girls 4 to 1. As of January of this year, more than 26,000 individuals were diagnosed with autism in California, and 70 percent of the entire autistic population nationwide is under 14 years old, which demonstrates an unprecedented upsurge.

Though some have speculated that these numbers are due to improved diagnostic techniques, many professionals in health and education who work with autistic children say the upsurge is only too real. Autism is the No. 1 disability facing school districts, and has far outstripped Down syndrome, epilepsy and mental retardation. The causes are still unproven, and an intense debate rages about whether autism is a genetic disorder or the result of neurological and biomedical damage triggered by environmental factors.

Without a lab test for autism spectrum disorders, the field is wide open to speculation. A major cause for concern, especially among parents, are toxic chemicals such as mercury-based preservatives in vaccines routinely administered to children in their early years. A more bizarre theory, posited by Steve Silberman in Wired magazine, suggests that genetic predispositions in some socially retiring software engineers and computer programmers can lead to certain forms of autism in their children -- a theory he terms the Geek Syndrome.

ASD is also bewildering because it includes a wide range of conditions. Some children with a form of autism called Asperger's Syndrome are highly verbal, while others have no speech at all. Most have great difficulty tuning in to normal social interactions. Many adopt obsessive behaviors and cannot tolerate having any detail of their routines disrupted. For families, one of the hardest issues is that autism is invisible, so others have difficulty understanding when a child seems to be acting out or behaving oddly in public. That is when Marchok hands out what she calls her "get out of jail free card," which explains that her daughter is not a spoiled brat but has autism, which brings with it a host of physical and social problems. These can lead to ostracism, teasing and even exploitation.

"Our special children want to be included, and they want to play. They have feelings too, whether they show it or not," said Marchok. "Katelyn needs to be around typical peers as much as possible so she has appropriate play and behavioral models."

Katelyn attends a special day class, but also takes mainstream classes, with the assistance of an aide, in several subjects, including music, art and physical education. She is learning to respond when her mother asks how her day went. Many autistic children express feelings through repetitive sounds, hand flapping, and tantrums. Verbalizing frustrations or making simple requests are skills that must be painstakingly learned.

Expert help is essential for this, and each afternoon, a tutor from the Foundation for Autistic Childhood Education and Support (FACES) arrives at the Marchok's home to work with Katelyn on speech, social interactive skills, early reading and writing, and practical tasks such as how to put on the brake when riding her training bicycle.

Today the tutor works with Katelyn on a basic skill for every child: saying her own name and address. Distinguishing the first from the last name has taken four sessions of practice, with worksheets, but today she passes with flying colors. After every response, her tutor praises her, gives her a heart token to stick into a book and a reassuring hug, pat or tickle. Touch is a sensitive issue for many autistic children, so maintaining tactile as well as verbal communication is an important part of keeping them responsive.

People with autism "must be explicitly taught to attend and focus," said Jennifer Sullivan, executive director of the Morgan Center in Santa Clara. "Often difficulty shifting attention is interpreted as non-compliance." Sullivan was speaking at a recent two-day conference put on by the Lucile Packard Children's Hospital at Stanford and the Morgan Center to further educate health professionals, teachers and parents about autism spectrum disorders.

The Morgan Center has been working with autistic children since 1969 and adults since 1985. The group's individualized teaching methods for autistic people have set the standard, and now serve as a model for the San Jose School District's special education program for ASD children.

"Staff are trained in behavior management techniques and have the tools to know what to do with a child who's having a bad day," said Tracy Hovda, whose son Scott has Fragile-X syndrome, another form of autism. "It's a very hard job, but it's so obvious they love what they do and they really care about the kids."

Experts are increasingly convinced that, with sensitive and expert support, many autistic children can become successfully functioning adults. They need medical interventions, special education, supervision and help of many kinds. They also need an accepting community that does not exclude them.

People with autism find it hard to make friends, but they can learn if they have an example. Katelyn has such an example in her friend Megan, a little girl she met at Sunday school, with whom she has regular play dates. Marchok believes this friendship is a beacon in her daughter's life, and wishes that all children with special needs might find friends in the mainstream community.

"If parents can encourage their children to have a play date and be a friend with a child that is different, they will be teaching their child an invaluable lesson in respect, tolerance and universal acceptance of differences. What a wonderful gift to your child ... as well as to ours!"


INFORMATION: Local and state resources:

* The Morgan Center, 400 N. Winchester Blvd., Santa Clara,, (408) 241-8161

* Lucile Packard Children's Hospital, 725 Welch Road, Palo Alto,, (650) 497-8554

* Foundation for Autistic Childhood Education and Support (FACES), (650) 595-9555

* Autism Society of America, San Francisco Bay Area Chapter,, (650) 637-7772

* Parents Helping Parents,, (408) 727-0182

* Pacific Autism Center for Education,, (408) 245-3400

* Early Start, Department of Developmental Services,, (800) 515-2229

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