From the Orangeburg Times & Democrat

Attacking autism
Bill hopes to insure early, intense therapy to improve disorder

By DIONNE GLEATON, T&D Staff WriterMonday, April 17, 2006

At age 2, Zachary Hendrix, son of Allen and Donna Hendrix of Orangeburg, was not talking or playing with other children. At 3, he had a 20-word vocabulary. His parents thought his many ear infections were affecting his ability to hear, and consequently his ability to converse.

Eventually, Zachary was diagnosed at the Medical University of South Carolina with autism, a lifelong neurological condition which affects speech, communication and social skills -- and approximately 24,000 South Carolinians of all ages.

Today, Donna says, Zachary, now almost 4, is making tremendous progress because of the applied behavioral analysis (ABA) he has received. He's learning his ABCs and social skills, finetuning his speech and can count to 20."We just basically take one issue at a time," she said.

April is National Autism Awareness Month. Doctors, teachers and mothers in The T&D Region all have touted early diagnosis and intensive intervention, particularly through the ABA methodology, as the best treatment method for a disorder with no known cause, no known cure.

At a yearly average cost of up to $50,000, however, ABA therapy is often out of reach for many individuals, particularly parents who are struggling to find the best comprehensive means to help their children become productive, fully-functioning adults.

A proposed bill currently in the South Carolina legislature would require insurance coverage for ABA and other doctor-prescribed treatment for autism and other pervasive developmental disorders such as Asperger's Syndrome. Insurers say the bill would create higher insurance premiums.

Bill proponents, however, say it is a more than necessary step in providing funding for needed therapies in the fight against autism.

Federal law states that all children must be provided an "appropriate education." While Orangeburg Consolidated School District 5 has its own ABA self-contained classroom at Mellichamp Elementary School, many public school districts may not have the money for what some parents say should involve one-on-one intensive ABA therapy.

Early intervention is key

To diagnose a child with autism or "autistic-like qualities that don't meet the criteria of autism," Dr. Tracey Macpherson of the Pediatric Clinic said parents have to be sure their child has regular routine pediatric physicals with developmental evaluations and doctors have to pay strict attention to the child's speech, language, and social development.

The cause of autism has a definite genetic component, she said, but also includes environmental insults, such as exposure to an illness, medication or vaccines, though autism hasn't been proven to have a connection to vaccines.

"Some insults just happen, but I really do believe there's a genetic predisposition," she said, noting that autism has become "an exploding diagnosis" among younger children."Depending on the age of the child, several referrals will go out," she said.

Children from birth to age 3 are referred to the state Department of Health and Environmental Control's BabyNet, an interagency system of early intervention services for families with children with developmental delays or associated conditions. The infants and toddlers are matched with professional services within their community.

Children over the age of 3 are referred through their resident Disabilities and Special Needs Board. Pediatricians also contact the Carolina Autism Research and Evaluation Center in Charleston, and then refer the patient to an autism specialist or pediatric developmentalist who makes the final diagnosis, Macpherson said. Referrals are also made to speech therapists and audiologists, she added.

Most kids with autism or autism-like qualities will also either have fine motor and sensory integration issues, so occupational therapists and/or physical therapists may also be part of the "multi-member team approach" pediatricians take.

If a child is already school-age when he is diagnosed, parents have to work with the school to get them into the appropriate classroom. "Certainly there have been different modalities tried and looked at (in treating autism), but the only one proven to be helpful is ABA. It seems the earlier that's started, the more success you have with it. Early intervention is key," Dr. Macpherson said.

'It hits us all'

Orangeburg resident Julie Mobley, hoping to increase the chances of early intervention and to help parents and others dealing with autism, has started an Autism Awareness and Support group, which met for the second time April 3 to hear from the coordinator of the South Carolina Autism Society's Parent-School Partnership program.

"We want people to know that they're not walking this road alone," said Mobley, a senior nursing student at Orangeburg-Calhoun Technical College, who also plans to develop a sibling support group.

"Parents don't need to reinvent the wheel," Macpherson said. "There are some outstanding people in our community who have gone through this and are more than willing to help."

Mobley's son Matthew, 4, was diagnosed with "pervasive developmental delay not otherwise specified" at the age of 3. This is the language used to describe autistic-like qualities that don't meet the criteria of autism, Macpherson explained.He is a now in a regular 4-year-old kindergarten class at Marshall Elementary School, but is also scheduled to begin private in-home, 40-hour-a-week ABA therapy.

It won't come cheap. Mobley and her husband are expecting to pay $7,000 for just three months of therapy.

"This means no vacation, less dinners out and relying on your family for financial assistance. Autism is not going away. Our only hope is that individuals can be helped to grow and hopefully become productive adults through a structured, consistent and stable home life with intensive therapy," Mobley said. "As a mother, you go through every emotion you can imagine. There are times of complete excitement and joy as with any child, but there are also times of sadness and heartbreak."

Donna Hendrix said while her son is in the ABA program at Mellichamp Elementary School, she, too, expects to spend up to $40,000 a year for her son's private ABA therapy. She and her husband spent approximately $2,000 last summer for his speech and occupational therapy."

He also has doctor's visits for progress checks and an ABA therapist through the (Sumter-based) South Carolina Early Autism Project (SCEAP). It's very expensive, but it has worked. His vocabulary has increased whether it's through sign language or vocalizing," Hendrix said.

Calhoun County resident Nicky Smith's son, Tanner, 7, was diagnosed with autism at the age of 4. He is a 5-K student at Calhoun Academy and is provided with a private shadow which his parents hired to assist him during the school day.

His family had also spent approximately $450 a month for in-home ABA therapy through SCEAP. Because of the high cost, Smith feels that the bill mandating insurance coverage should be passed for the children who need the treatment but can't afford it. ABA breaks down skills into their individual parts and teaches them, explains Melissa Valentine Ruge, an SCEAP clinical supervisor. With intensive intervention, she said, 48 percent of children will be able to function normally and be in a regular education classroom indistinguishable from their peers, and the other 52 percent are significantly improved from where they were.

The bill is targeting public and private insurance companies, Ruge said, with the goal of intense therapy affordable to all in need of it. "It probably will be voted on somewhere between May and June, and then something that looks like the original bill will go into effect as of July 1," she said. " The question is whether it will look like what all these parents really want it to.

"'A huge issue'"

Funding is a huge issue. We either pay now, or pay later for institutions and group homes for the rest of their (autistic individuals') lives. We know ABA services work, but the level at which it does varies depending on the individual," said South Carolina Autism Society director Craig Stoxen.

Stoxen said the state has been unable to provide "a seamless, flowing system of care" for autistic individuals, and he feels that a comprehensive bill to address this problem and its funding is critical.

Orangeburg resident Teresa Jameson, a nurse anesthetist at TRMC, said the funding for autism therapy should be shared by both the state Medicaid system and private insurance companies. "The state needs to pitch in, too," said Jameson, whose 12-year-old autistic son Mark also underwent ABA therapy. He is now a student at Glen Forest School in Columbia.

"In my opinion, ABA saved my child. That's the one therapy that's absolutely necessary, but my concern is that it gets watered down if it gets into the school system. I think the school needs to make sure they have a good basis for educating the teacher assistants, teachers and therapists and make sure they continue their education," Jameson said.

OCSD 5 federal programs coordinator Cindy Clark said that in 2002 the district started its own ABA program which provides speech therapy and comes complete with a self-contained ABA classroom, a transition room for children not fully ready for immersion in a regular classroom, and an occupational and physical therapy room.

SCEAP and the Carolina Autism Project work as consultants with the district to provide ABA training with teachers and therapists. The ABA self-contained class at Mellichamp Elementary includes eight line therapists which provide one-on-one instruction with its students, with approximately 12 others spread out among other schools in the district."We have several autistic children. Some kids are in regular classes with the line therapist support. Several are in educable classes for students with educable mental disabilities, and one's in a class for students with training disabilities. So the cognitive levels vary widely," Clark said.

SCEAP visits Mellichamp twice a week to provide ABA training." Several teachers also go to training all year long. Even in the summer, they go to week-long training sponsored by different groups. We want them to keep up with the current research," Clark said.

Mellichamp Elementary principal Beverly Stroman-Spires said the goal is to improve behavioral, communication and social skills to be able to "get children into the least restrictive environment, which would be the regular classroom."ABA trainers work well with parents, says ABA supervisor Sara Ardis, adding that they send home everything they do, including the signs the child needs to work on.

Georgia resident Donna Richards runs My Brother's Keeper in Rome, Ga., which has a goal of improving the lives of the autistic and their families. The foundation, which is planning to build an autism therapy center, also has a Web site offering information on autism and available education packages.Richard's own 6-year-old son, Justin, was diagnosed with autism at age 3, and she credits his tremendous progress to his ABA therapy. A trusted pediatrician had initially told her that Justin was simply going to be mentally retarded and that she should apply for disability benefits.

"It was devastating, but he's very verbal now and has competed in the Special Olympics. The thing with autism is that no two autistic children are alike, and no one therapy works for every child," said Richards, who is in the process of writing a second book entitled, "The Parent's Guide to Identifying and Minimizing Autism.""My main focus is to let parents know that there is help out there and not to give up," she said. "This is your child. Keep the faith, and it will be all right."

T&D Staff Writer Dionne Gleaton can be reached by e-mail at dgleaton@timesanddemocrat.com or by phone at 803-533-5534.