Date: Fri 23-Apr-1999

Publication: Bee

Author: KAAREN

Quick Words:

Autism-Walsh-Letso

Full Text:

Life With Autism Demands Attention, Learning, And Love

(with photos)

BY KAAREN VALENTA

Nicholas Walsh was a normal two-year-old, according to his mother, Dinah, when

he suddenly began to withdraw into himself.

"Until then he was talking, walking, acting normally," Mrs Walsh said. "Then

he started slipping away into his own little world."

By the time he was three, Nicky, who celebrated his sixth birthday on April

23, was diagnosed with autism. The disorder was not commonly known until actor

Dustin Hoffman played an autistic older brother in the movie Rain Main.

Autism is a severe developmental disorder usually identified during the first

three years of a child's life. While each child is unique, children with this

disability often have substantial impairment in the areas of communication,

socialization and play skills, and may engage in behavior that others consider

abnormal or disruptive.

"I want people to understand when Nicky has a `moment' in the Big Y, that it

is because he has autism and is unable to control himself," Mrs Walsh said.

"People have no clue what is going on and they often don't know what being

autistic means. One woman told me her grandson is `artistic' too, but he

doesn't behave like Nicky. When I replied, `not artistic, autistic,' she just

stared at me."

Another Newtown resident, Suzanne Letso, has a nine-year-old autistic son,

Tyler. When he was diagnosed six years ago, Mrs Letso was told he would never

talk and would require lifelong care. In response, she co-founded a parent

support group and began her own research.

"I had a background of marketing research in the international medical product

industry, so I did the same thing as if a problem had been presented to me at

work," Mrs Letso said. "I learned there is no magic pill [for autism] and no

effective intervention other than an educational strategy based on the

principles of applied behavior analysis [ABA]."

While this teaching strategy has been used successfully for years, the problem

has been a shortage of qualified professionals who have been trained to use

it, she said.

"Historically children with autism don't fare well," she said. "Ninety percent

wind up in a residential program, 75 percent by the age of 14. That has

dropped to 10 to 14 percent who have been placed in residential programs by

age 14."

Mrs Letso became a member of the Connecticut Department of Education's Task

Force on Autism, the Connecticut Special Education Resource Center's Autism

Training Providers Groups, the Committee for Early Detection in Autism, and

vice president and founding board member of the Association for Science in

Autism Treatment, a national organization.

In 1995, Mrs Letso founded the Connecticut Center for Child Development, Inc.,

(CCCD) to sponsor conferences, offer courses and provide consulting services

to public schools, families, and the state's Birth to Three Program. Soon

thereafter CCCD moved into a church basement in Fairfield where it opened a

nonprofit school for children ages 3 to 12 with autism and related disorders

and offered a graduate program in ABA through an affiliation with the

University of North Texas. Currently 11 graduate students are in the CCCD

program.

CCCD is more than a typical school, Dinah Walsh said.

"The students learn about dressing and undressing, toileting, how to play

appropriately with toys, how to follow social cues," she said. "Children with

autism need so much more support. It's always like two steps forward, one step

back."

Next week CCCD is opening a new facility at 925 Bridgeport Avenue in Milford

which will enable it to expand services to include an early intervention

program for one- to three-year-olds. The building, which previously housed a

retail business, needed extensive renovations.

Autism Awareness Month

"It's fitting to be opening our new facility during Autism Awareness Month,"

Mrs Letso said. "There are extensive studies and growing bodies of literature

that document the tremendous gains children with autism and related disorders

can make with early, intensive intervention."

"Currently we have 15 children in the school, with a maximum of 30," Mrs Letso

said. "Eventually we want to expand to serve older children, ages 12 to 21. We

have received a donation of 50 acres of land in New York where we want to have

a summer camp. We also envision an assisted work program and a residential

living facility."

No one knows what causes autism. Researchers are investigating many possible

contributing factors including the environment, immunizations, antibiotics,

allergies, diet, perhaps something that triggers an inherited, genetic

predisposition.

"As a parent, when you are told there is no known cause and no cure, you spend

your whole life as a little field researcher on the heels of the doctors," Mrs

Walsh said. "You get on the Internet, go to the library, talk to other

mothers, and think back over everything that happened in your life."

"Nicky had [taken] antibiotics 23 times before his third birthday, so I wonder

whether it could have been that, or maybe it was fumes from the new carpeting

we put in his room," Mrs Walsh said. "I go to every conference I possibly can

to learn everything I can."

When she met Suzanne Letso, it changed her life.

"She took me by the hand and led me out of the woods," Mrs Walsh said. "I was

so naive, I knew nothing about autism."

Although taking Nicky to school at CCCD means two daily round trips, Mrs Walsh

said the more than three hours of driving is a small price to pay for the help

that he is getting.

"Nicholas doesn't have the skills to be with peers [in a public school]," she

said. "He would be highly disruptive and wouldn't be able to learn. You have

to make eye contact with him -- get in his face -- before you talk to him. The

most stressful part is making a conscious effort every time you deal with him.

It's hard to do 24 hours a day."

Although it felt like the child she knew died when Nicky slipped into autism,

Dinah Walsh said her feelings are far more complicated than that.

"There isn't a day that goes by that I don't feel the pain of losing Nicky to

autism," she said, "but also not a day goes by that I don't feel blessed for

all he has taught my husband and I -- he has given us to much more compassion

for other people."

On May 1, a gala dinner dance will be held at the Greenwich Hyatt Regency to

benefit the CCCD's building renovation fund. Celebrity superstars Dan Marino,

Doug Fluti, John Elway, Troy Aikman, Glenn Foley, Kent Graham, Danny Kanell,

Jim Fassel and Jason Sehorn will be among the special guests.

"Dan Marino and Doug Flutie each have a young child with an autism spectrum

disorder and their own foundations which support autism," Mrs Letso said. "The

fact that they are coming to show their support of CCCD says a great deal

about their commitment to enhancing awareness of effective autism education

and treatment."

Gala tickets are $500 per person. The evening includes a cocktail reception at

6:30 pm, presentations and dinner at 8 pm. Entertainment will include the

music of composer Ricky Ian Gordon, and also the Sounds Perfect orchestra.

Supporters also are holding a raffle for a 1999 Jeep Cherokee Larado. Tickets

are $50 and a limit of 2,500 will be sold. The winner will be drawn at the

gala; the winner need not be present. Tickets for the gala and the raffle may

be obtained by calling CCCD at 203/254-1912 or Dinah Walsh at 426-4127.

Mrs Walsh said there is a newly established parent support group in Newtown,

where there are 16 children, ages 2« to 16, with autism. Contact persons for

the group are Dawn Ford, 426-6158, and Patty Calderera, 426-9773.