Out of the Shell and Into the Light

In 1992, Shanti Kilduff was seven months pregnant with her daughter, but her thoughts inexorably drifted off to Joshua, her one-and-a-half-year-old son. Shanti knew there was something terribly wrong–Joshua would arch his back away from her each time she tried to pick him up. He was also unnaturally silent; his mother felt helpless. What was going on inside his head, Shanti wondered incessantly. Inside his shell, was he happy or sad? Did he realize that she loved him intensely?

"We would cuddle him but…" her voice trails off and her eyes moisten. "He didn’t really talk but was brilliant at doing puzzles for his age. He would put them face down and memorize it–so we thought maybe he was very smart and smart people don’t always want to talk. Then we sent him to school to be with other kids but he would always set himself aside. At the end of the school year, the teachers said he hadn’t really socialized with the other kids. So we started looking for help."

The developmental pediatrician’s diagnosis left her crushed: Joshua was autistic.

Autism, the result of a neurological disorder that affects the functioning of the brain, is a complex developmental disability that typically appears during the first three years of life. The disorder makes it difficult for children to communicate with others and relate to the outside world. In some cases, aggressive or self-injurious behavior may be present. Persons with autism may exhibit repeated body movements (hand flapping, rocking), unusual responses to people, attachment to objects and resistance to changes in routines. Individuals may also experience sensitivities in the five senses of sight, hearing, touch, smell and taste.

Heavily pregnant and at great financial expense, Shanti brought Joshua to the US for treatment. Initially, the behavioral modification techniques employed by the center were traumatic. "You’re there watching your son throw a fit and the therapist is still there taking his hands and making him do what he’s supposed to do. It bothered me," she recalls.

"It’s also hard thinking what he’s going to be like when he grows up. I worry about whether he’ll be able to work or be happy. If I’m not here, will he know what to do? Never mind if he doesn’t get married. There will be less headaches for me if he stays single!" she says, flashing a luminous smile despite her understandable apprehensions.

She returned to the Philippines after a few months, but not after convincing an American consultant to regularly communicate with her via video conferencing to discuss Joshua’s progress. Six months later, Shanti was persuaded to return to the US.

"Over there, I wanted to learn everything because I knew we were coming back to the Philippines. Most of my family is here and I like Manila. So early on, I already started getting involved with the program. I told them, ‘You teach me and I’ll do it!’ We were there for almost eight months. When we came back here, I trained the therapist myself to work with my son," she says.

The results were encouraging. Joshua began to attend normal school accompanied by the therapist. The curious upshot was that Shanti, after being heavily involved with her son’s program for so long, now suddenly had half the day free. She was raring to work. "I talked to doctors who said it was a good idea to put up a home-based program here. A doctor referred a child to us and we started working with him–Mark Cerruti of Hands Untied in the US was our consultant. The child progressed very well and more children were recommended to us. That’s how the home-based program started. We hired more therapists and trained them the same way we trained the first one. Mark would come in and we would have seminars. We would also go to schools and talk to teachers about mainstreaming and autism in the classroom," she says.

The home-based program involves a therapist visiting the autistic child in his or her home, sometimes everyday, often as long as six hours each day. There are currently 25 children under the program; many of them now attend normal schools.

"The kids have a shadow teacher, one of the therapists, who stay with them inside the classroom," she says. "In the beginning, their classmates suspect something is different about them but kids are very warm. They don’t have this prejudice in their minds yet. They used to go up to Josh, for example, get his puzzle and wonder why he doesn’t react. But now they accept and love him. When he’s not listening, they’ll tell him, ‘Ok, Joshua, teacher said to go up to the board.’ In lining up, they hold his hands. There’s always one or two in the class who act like a mom!"

The home-based program is not cheap–depending on the parents’ capacity to pay and the number of times therapists visit in a week, prices range from P6,000 to P30,000 a month. Shanti felt a burning desire to provide a modified program for autistic children whose parents could not afford the steep charge. Thinking ahead, she registered the Behavioral Management for Autistic Children (BMAC) Foundation.

She says, "We finally launched the foundation around two years ago in a very educational affair at the Shangri-La. Dr. Joel Lazaro spoke about autism and we also had videos. People donated money–mostly family and members of the Indian community. I was very happy with the support we got. With the donations we got, I approached one of my uncles who owned an office space in Makati Cinema Square Tower. He gave me the keys and said, ‘Here, use it.’ We started fixing up the rooms with the money we had."

A generation ago, the vast majority of people with autism ended up in institutions. Times are more enlightened today and the BMAC Center is a beehive of activity. A variety of strategies such as positive reinforcement and time-out are employed to increase appropriate communication and social behavior–and to decrease inappropriate behavior like toe walking, severe tantrums and hand flapping. The BMAC Center treats ten children today, their tuition subsidized up to 85 percent by the foundation.

Because the center has just five rooms, parents are carefully screened. "We really need parents who will commit to giving their time, parents who really know what to do so they can implement the program at home," says Shanti.

Sensory impairments may make it difficult for the autistic child to withstand normal stimulation. For example, some are tactilely defensive and avoid all forms of body contact. Others have hypersensitive hearing–approximately 40 percent of autistic children experience discomfort when exposed to certain sounds or frequencies. In contrast, some parents suspect their children of being deaf because they appear unresponsive to sounds. For these reasons, Shanti starts new students slowly.

"They get overwhelmed by the stimulation from their environment so they shut it out," she says. "It’s believed to be genetic but there is really no known cause of autism. It seems to be the way their brain has structured itself from birth–they cannot input certain stimuli the same way we do.

"We also try to redirect their self-stimulatory behavior. For example, when they start hand flapping when we ask them to identify objects, a prompter will reach out and hand them the object so the appropriate behavior is reinforced while the hand flapping is not addressed at all. Eventually, because they like the reinforcer, they don’t do it again."

With the deep involvement of parents and the patient professionalism of the therapists, there have been numerous success stories. One little girl came into the center with a propensity to bite anyone who came near. After just four months in BMAC, she now has been weaned off the dangerous habit and is also on her way to overcoming her toe walking. One boy’s seemingly inexhaustible supply of energy was imaginatively addressed by having him push his therapist around in a cart. The kids in BMAC are obviously having fun–perhaps even more heartwarming is that so are their parents.

Shanti proudly counts Joshua as one of the triumphs of BMAC . "You may not get it 100 percent, but our goal is to normalize their behavior. My son is in Grade 3 in a regular classroom and does his seatwork by himself. He knows how to answer and goes up to the blackboard. He likes to do Kumon. If you were to watch him in his classroom, probably 80 percent of the time you couldn’t tell he was special."

In contrast, BMAC parents–once fearful their children would forever hide in the bleak shadows of private landscapes–are 100 percent certain that Shanti Kilduff is a very special woman. Not content with pulling Joshua out of the darkness, she has directed rays of hope towards their own families.