07/04/2007

Addressing Autism

Diagnosis is just the beginning for parents

By
Record-Eagle staff writer

Record-Eagle/Jan-Michael Stump
Harrison Franklin, 6, smiles for the camera while his mother, Marlowe Franklin applies sunblock before a trip to the beach with his brother and sister. Harrison, who is autistic, typically can only stay at the beach for short periods of time because he gets overstimulated, his mom said.

TRAVERSE CITY — As an infant, Harrison Franklin had difficulty eating and sleeping and babbled only a little. By his second birthday, even that speech had regressed.

"He just didn't respond to me like my other kids,” said Marlowe Franklin, 33. "We thought maybe it was his hearing or his sight. It was something I really couldn't put my finger on.”

As her son's differences became more obvious, Franklin sought answers from specialists in and outside the region, often waiting weeks to get in. But it was another six months before Harrison, now 4, was finally diagnosed with autistic tendencies. Then, Franklin said, the real work began.

About one in every 150 children in the U.S. has autism, the most common condition in a group of developmental disorders called autism spectrum disorder. Yet learning where to turn after getting the diagnosis can be frustrating for many parents.

"I think it's incredibly confusing for parents and it's what we hear,” said Julie Windham, clinical coordinator at Children's Therapy Corner in Traverse City and a home consultant with its P.L.A.Y. Project, which provides play-based learning services for children with autism. "One of the first questions parents ask is, 'How do I know where to go, what to do, what's the research showing, what's best for my child?'”

If there's no easy answer, it's because no two people are autistic in exactly the same way. A neurological disorder that affects the senses and the ability to communicate and socialize, autism may or may not cause physical and cognitive impairments.

"We have a saying: Once you've met a child with autism spectrum disorder, you've met a child with autism spectrum disorder,” Windham said.

Treatment usually involves occupational and speech therapy, but also can include applied behavior analysis and "Floor Time,” two common approaches to autism. ABA uses a variety of techniques to teach children to act for what they want and to reduce behaviors that may be harmful or that interfere with learning.

"Floor Time,” based on the Developmental, Individualized, Relationship-based theory on which the P.L.A.Y. Project is modeled, is designed to woo a child out of isolation in order to increase socialization, improve language and decrease repetitive behaviors.

Special education, physical or music therapy, and biomedical or other "alternative” approaches also are often explored.

The important thing, experts say, is early, intense and individualized intervention.

"I cannot understate how important it is to intervene early with children,” said Andrea Polhamus Reed, an Arcadia-based certified behavior analyst with her own practice, Repertoire Development. "You can really make big monumental changes before age 5 or 6. After then, it's almost as if a window of opportunity starts to close.”

Windham recommends that parents get evaluations as soon as possible to find out how their child learns and responds best, then develop a plan accordingly. Developmental pediatricians or related professionals whose background includes a variety of interventions can guide families toward some options.

Parents in the Grand Traverse region can contact the Traverse Bay Area Intermediate School District to see if their child is eligible for services from school, said Deb Drayton Nelson, director of TBA-ISD programs and services for students with autism spectrum disorders. The district offers a screening process for infants, toddlers and pre-schoolers by a multidisciplinary team including a school social worker, a psychologist, a speech and language specialist and an occupational therapist.

Eligible children receive their own individualized education plan — a sort of roadmap for parents and the school to follow — and may be placed in one of the district's center-based programs or in an early childhood special education program operated by local schools. School-age children may be put in general or special education settings or a combination of the two, with or without a teacher assistant to help them establish a routine. Some schools even offer summer programming for eligible children.

Currently 280 students in the five-county district are eligible for special education services under autism spectrum disorder, Nelson said. But that number is growing, whether from better identification of the disorder, the addition of autism as a special education category or changes in the environment. While the causes of autism are unknown, genetics, bacterial infections, exposure to environmental toxins, and even autoimmune imbalances all could play a part, researchers say.

Norm Bistodeau is a teacher consultant for autism spectrum disorder with TBA-ISD. Besides working with teachers to provide more effective approaches in the classroom, he provides training and education on the disorder to parents and schools.

"Autism spectrum disorder is one of the fastest growing areas in special education,” said Bistodeau, whose case load is approaching 100 students. "When I started out about eight years ago, the ISD had one consultant. Now there are three teacher consultants and three teacher assistants.”

Franklin plugged her son into the school system when he was 3, but didn't wait until fall to seek home-based treatment provided by therapists, tutors and a psychologist.

"All that summer we did 20 to 40 hours a week of intense behavior therapy plus doing speech twice a week and OT once a week,” she said. "We had people here constantly.”

While prolonged, one-on-one treatment has been shown to be most effective, it is usually expensive. Insurance companies classify autism as a mental illness and often give it limited coverage.

"I haven't found insurance companies that will pay my entire fee,” said Polhamus Reed, who comes to Franklin's home two or three times a month at a cost of $125 an hour. "The expense is astronomical. I've known families downstate to refinance their homes to pay for the gamut of services.

"So my advice to families to save money would be to become experts in their own child's behavior — to study ABA as if they're working toward a degree. Because ultimately it's the parents that know that child best and the more time they invest in the principals of ABA, the more effective of a teacher they'll be.”

Sara Leatz tried several different therapies with her son, Peter, and continues to investigate any lead that comes her way.

"I took different textures of materials and rubbed it across his skin 15 times a day just to bombard his sensory system to try and decrease the oversensitivity,” said Leatz, a registered nurse. "I did the same thing with auditory using bells and whistles and blocks.”

She also encouraged him to crawl 500 yards a day by bribing him with treats and games, and placed him on a gluten- and casein-free diet, since research suggests there may be a digestive autoimmune component of autism.

Now 9, Peter has made significant progress, she said. While he can't converse, he has spontaneous thoughts and can communicate his needs. He also reads at the second or third grade level with the help of a program she taught him when he was a toddler.

"He's not the same child he was,” Leatz said, adding that the family is still waiting for a breakthrough with 10-year-old Kyle, who was diagnosed with Asperger's syndrome or "high-functioning autism” a few years after his brother.

Now a relatively new support group is helping to guide parents of children with autism spectrum disorder. Called Autism Resource Network, the non-profit community-based organization provides education and advocacy for families and promotes autism awareness in the five-county Grand Traverse region.

Franklin, its president, said the group is not only giving parents the chance to learn and trade information but to address their concerns over care-related issues like the high rate of provider turnover in the area and long waits for therapy.

"My greater goal is to provide for a better pediatric care clinic for kids with autism in Traverse City,” she said.

For more information about the group and its Aug. 21 fund raiser, visit www.autismresourcenetwork.org.