New Center Opening!

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Learning Behavior

New therapy center, second of its type in state, to help children

with autism

By le Deaver

JOURNAL REPORTER

One Monday morning, Perk Steele and his tutor ran through the rooms

of his house, hopping from activity to activity. She picked him up

and sat him at a small table. " Do this! " she cried, and in quick

succession banged a hammer on the table, wiped her mouth with a

napkin and did a few other things. Perk mimicked everything she did,

sending her into cries of praise. After just a minute, she picked

him up and stood him in front of an easel. Perk, 3, likes to paint,

and this was his reward for a job well done. Sister Ellie, 4, looked

on and sometimes tried to join in.

" It just looks like you're just having fun, " said Steele,

Perk's mother.

It's actually a therapy for autism.

Autism, a neurological disorder that affects the function of the

brain, causes children to have trouble forming social relationships

and using language. Children also have unusual patterns of behavior,

such as repeating words or movements incessantly. Most heartbreaking

for parents, many children also have trouble being affectionate.

Perk's therapy is based on the principles of applied behavioral

analysis, or ABA.

ABA therapy works on autistic children by breaking tasks, such as

putting on shoes, into smaller tasks and reinforcing good behavior

with rewards. The rewards include anything from getting to do a

favorite activity, such as painting, to getting a small piece of

candy.

Until now, ABA in this area has been done mostly in people's homes,

with private tutors employed by parents for up to 40 hours a week.

The cost of hiring the tutors and doing the associated work can rise

to $60,000 a year - and isn't covered by most health-insurance

policies.

Part of that will change at the end of this month with the opening

of The Applied Behavioral Analysis Center of North Carolina. The

center, at Highland Presbyterian Church in Winston-Salem, will be

just the second in the state, said Felice Brenner, the chairman of

the board and the chief executive of the center.

Autism is receiving increased attention around the nation because of

what's reported to be a dramatic increase in the number of cases.

There are no statistics for the number of autism cases in North

Carolina. But the number of children ages 6 to 21 receiving special-

education services for autism in the state increased from 1,464 in

1996-97 to 1,708 in 1997-98, according to the U.S. Department of

Education. Experts, who don't know what causes autism, also aren't

sure why so many more children are reported to have the disorder.

Doctors generally don't prescribe a therapy for autism because the

condition is still so poorly understood. Parents are told to

research options on their own to decide what makes sense to them -

and what they can afford.

Even with the nonprofit center here, ABA therapy will remain out of

reach for many parents. The center will have a ratio of 1.3 teachers

to one student, and will cost between $25,000 and $60,000 a year a

child. Brenner hopes, however, that the nonprofit center will

attract grants that can be used to create scholarships.

" It opens doors for funding and accessibility for more families. In

the past, ABA has only been available for very few families in this

community, less than 1 percent, " Brenner said. " The reality is most

moms and dads aren't home all day to administer this, nor can they

afford to have tutors coming in and out of their home for the 30 or

40 hours a week it takes to administer this therapy. "

ABA therapy was not available in North Carolina until parents who

had read about the success of the treatment in other areas found

ways to bring it here, said Dr. Kurt Klinepeter, the medical

director of Amos Cottage.

Most parents have relied on the TEACCH method, a treatment that was

developed at University of North Carolina at Chapel Hill in the

1970s.

TEACCH - Treatment and Education of Autistic and related

Communication Handicapped Children - tries to organize materials so

they make more sense to people with autism, said Mesibov, a

professor at UNC in the department of psychology and psychiatry and

the director of the TEACCH program.

TEACCH is offered through the school system, and the programs,

including diagnosis and one-on-one sessions, are generally free. The

TEACCH program has a long waiting list for diagnosis and one-on-one

therapy.

Proponents of both therapies have created controversy about which is

best, Klinepeter said. But the important thing is that there are a

variety of options out there, he said, since the disorder can strike

in so many different ways, and with so many levels of intensity.

" There is no one true method. I like the idea that there are options

and you as a parent, a consumer, can do your background research, "

Klinepeter said.

Researching treatment options and costs can be difficult, though,

especially for people who are also dealing with a devastating

diagnosis and a small child who has a behavioral problem.

" Most of them don't know a thing about this whole system of care and

they have a small child who (has autism), " Klinepeter said.

Research is what led the Steeles to ABA. Shortly after Perk received

a diagnosis of his condition, they talked to a family friend who had

tried ABA.

" They had been through everything, and they had been doing ABA for

six months and said this is the way to go, " Steele

said. " We were really fortunate. "

The in-home therapy can be difficult for families.

Nearly a year after they began, the Steeles are happy with their

choice but admit that the therapy is overwhelming at times. Every

moment with Perk has to be about reinforcing his good behavior.

Temper tantrums have to be ignored. Details about what Perk has done

that day - how many words he says independently, responses he's

given to questions, how he's reacted to new activities - are all

recorded.

The Steeles meet with their therapy team - several tutors and a

coordinator - once a week. The paperwork that they go over at those

times has nearly overwhelmed a three-inch-thick ring binder, and

Steele notes ruefully that she needs a new file box because

that, too, is full.

Steele works 10 hours a day, six days a week to pay for the

therapy. He is the national director for the Dominican Republic and

Haiti for Young Life, and also works a part-time job. Family members

have also helped out, and the Steeles are one of the few families

that have insurance that also helps financially.

For the Steeles, it's worth it.

" You do quick and intense now so it's a three-year program instead

of eight (years), " Steele said. " I think we just hope that

he'll be able to live a full life.... We hope he will have a

cognitive understanding that God loves him and made him. "

• le Deaver can be reached at 727-7279 or at

ddeaver@...

You can also see the article and photos at www.journalnow.com, click

on Local News (on the side tabs) and then Health.