For Englewood family, help in the face of autism

March 13, 2013

Posted: March 9, 2013
By Donna Koehn

The two baby girls in China were sweet, beautiful — and in desperate need of a home.

Debbie and Jeff Allspach had waited so long for them to make their little family complete. Samantha came home at about 8 months of age, while Danielle arrived when she was about 17 months old.

Although they were not blood relatives, the girls would be raised as sisters in the couple’s roomy Englewood home.

As the two grew, their increasingly strange behavior was chalked up to difficulties forming an attachment to their new parents, something Debbie Allspach knew to expect.

Danielle stopped talking or making any attempts to communicate. It seemed sudden; she had been laughing, clapping her hands, making eye contact. She also couldn’t stand up, well past the age at which she should have been running.

Samantha became out of control at preschool, her speech slow, her ever-tentative serenity shattered by loud noises.

Danielle began to hit herself in the face and yank out her own hair.

“We weren’t sure what it was all about,” Debbie says.

Then came the shocking diagnosis: Both girls had autism.

“I couldn’t say the world ‘autism’ or I’d start crying,” she recalls. “Obviously this wasn’t what we expected when we adopted.”

Putting away the picture

Some parents who have adopted from other countries have been faced with behaviors they did not anticipate, and have tried to send the children back.

That was never an option for Debbie and Jeff. Danielle and Samantha were their girls.

“We waited eight long years for them,” Debbie says. “Just like with any parents, you can’t predict what will happen. You just have to put away the picture of what you expected your family to be.

“I couldn’t stop crying, though. I was grieving for the life I thought we were going to have.”

As an increasing number of parents have done before them, the couple dried their tears and immersed themselves in study to figure out their girls’ best options.

They decided that a treatment called Applied Behavioral Analysis, or ABA, offered the best chance for Samantha and Danielle to improve.

ABA, the No. 1 treatment option for the estimated one in 88 children with autism, involves extinguishing bad behaviors and encouraging better ones. Children must be incrementally taught the social skills that other children pick up naturally.

At its most effective, ABA is an intensive one-to-one treatment begun in the child’s earliest years.

In 2008, the Florida Legislature determined that private insurance would be required to cover autism treatment beginning in 2010.

The family had to do the best it could prior to insurance kicking in. Private ABA can be expensive and hard to find in many parts of Florida, Englewood among them.

The couple regret not living near a big city with plenty of options for their girls’ earlier years.

“We never would have bought this house if we had known what was ahead,” she says of her Englewood home, which likely would be a challenge to sell in the current market.

Debbie Allspach had to take a new job with fewer hours to accommodate long drives to appropriate schools and time spent working with the girls in afternoons and evenings.

Samantha, who is showing great improvement, attends a Montessori school in Venice. Danielle, 8, attends a school with ABA therapists in Lakewood Ranch.

Jeff’s job as manager of plastics in a warehouse keeps the family afloat.

Help arrives

Meanwhile, a new service in Bradenton has started sending a therapist almost an hour south to their home to work with Danielle and her parents.

Grafton Integrated Health Network, a private, nonprofit organization, offers ABA treatment primarily in homes and schools.

It began 55 years ago in Virginia, and the Bradenton office, which opened in September, is its first in Florida.

Lucy Bargioni, with a master’s degree in psychology and additional training and certification in ABA, is the program director.

“There is such a high demand in this area,” Bargioni says, and it goes beyond autistic children.

“We treat predominantly children, but also adults and others with severe behavioral challenges. Our goal is to help people stay in the natural setting.”

Grafton’s Bradenton office has two full-time therapists and five behavioral specialists who work with clients in their homes under her supervision.

The office, at 1608 53rd Ave., also offers a walk-in Community Behavioral Resource Center, with free access to the latest research, literature and educational materials. DVDs and books can be checked out for free to help parents and professionals learn ABA techniques.

Debbie Allspach says ABA seems almost counterintuitive to natural instincts. Before, when Danielle hit herself, fell to the floor screaming or otherwise acted out of control, Debbie and Jeff would run to her and try to soothe her or remove her from whatever circumstance had distressed her.

Now, based on her experiences working with Grafton therapists and other ABA practitioners, she knows doing so reinforces that behavior.

“It’s embarrassing in public and I get horrified looks,” she says. “But we have to ignore it. I’ve taken her in stores and everybody stares.

“But I know I have to continue what I was doing. I can’t leave the store. You have to harden yourself.”

Jeff Allspach says when he has Danielle with him in public, he simply tells everyone right away that she’s autistic so they will understand if she becomes emotionally distraught.

Vigilance is hard work

Still, caring for Danielle is a time vacuum for her parents.

They must constantly monitor her to prevent destructive behavior and to keep her from sliding into her own world. They also have to try to teach her how to play, something she does not do naturally.

If they miss a chance to reward or ignore a behavior, the progress can be set back for weeks. Vigilance is imperative.

“We’re lucky if Jeff and I can even tell each other what happened during the day,” Debbie Allspach says.

The treatment is working, albeit slowly.

Although her use of language is limited, Danielle has learned to ask for what she wants and address the question to a specific person. When she does that, there’s a family scramble to grant her wish, as long as it’s reasonable. Doing so reinforces the behavior they want to encourage.

The request might be to be allowed to pick up and stare at her crayons, one by one, something that in the past would entrance her for hours. That’s called “stemming” in the world of autism. She also is allowed to watch her favorite show, “The Wiggles,” as a reward for doing well.

Her parents usually let her do so for specific amounts of time, often five minutes.

Most of the time, Danielle is a much calmer girl.

“We can go to the beach or out to eat or even to Disney,” says Debbie Allspach. All of that was out of the question before.

Still, every day is challenging.

“I’m always on edge,” she says. “I have to constantly stay on guard to stay one step ahead of her, to guess what might throw her off and prepare for it.

“We’ve learned a lot of strategies. When she’s upset, we try not to talk so much, which can make it worse.”

Bargioni says Danielle is intelligent, and learns quickly. But the social interactions with parents that are pleasant and motivating to young children hold no appeal for those with autism.

“People without autism want to please, but that’s not a reward for these children,” she says. “We have to establish ourselves as something good.”

Both girls now gravitate to their mother as an anchor in a world that can seem chaotic.

“Until she got ABA, Danielle’s behavior got worse,” Debbie says. “But since then, she’s become a happier child. And that’s what anybody wants, for their child to be happy.”