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Volume 41. No. 2.
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In There Somewhere
For Marilyn Filley '88, raising a child with autism is a challenge for both the heart and mind.

By Rachel Stewart Johnson '96

Three-year-old Damien Pitt’s diet consists of seven foods. Settling upon the tiny scroll of foods that does not disrupt his sensitive digestive system has been a series of missteps, of leaps of faith with no room for error.

Each day, his mother, Marilyn Filley ’88, prepares the same menu for her curly-haired toddler: three types of unprocessed meat, carrots, avocado, pear-sauce, applesauce and nothing else.

Damien has autism. His diagnosis, delivered before he reached age 2, makes him part of a growing population. He is one among thousands of tots diagnosed each year whose varying array of social, linguistic, sensory and immunological symptoms profoundly shape their development and pitch their caregivers into new lives, saturated with challenges both diverse and enduring.

Filley and her husband, Daniel Pitt, find themselves scanning Web sites nearly every day to research their only child’s disorder. “It’s like riding a roller coaster of hope,” Filley says. Their efforts have forged their belief that Damien suffers from a medical illness rooted in a disastrous combination: a vulnerable immune system and an increasingly toxin-rich world.

They follow the treatment regimen espoused by a national organization called Defeat Autism Now!—heal the ravaged digestive system with dietary restrictions, minimize exposure to heavy metals and other environmental agents, and pursue conventional behavioral therapy.
The Filleys have become pioneers in this approach, a reality that adds to their battles. They battle the medical establishment, which views such treatment approaches as a fringe phenomenon. They battle the public school system, a potential antidote to the staggering costs of private therapy but one laden with bureaucratic hassles. They battle the daily trials of caring for a child whose needs are many. There are emotional battles too.

“I just ached for the connection that I saw,” says Filley, referring to her observations of mothers and children during Damien’s second year, when his disability was becoming apparent. Professionals asked questions: Does he respond to his name? Does he point to objects to draw your attention to them? Does he use language in a meaningful way?
Children and adults with autism are characterized by a markedly different interpersonal experience. It is not that they fail to secure deep bonds with loved ones, or that they eschew physical affection—Damien’s hugs for his mother and father are many. But the nature of the connection between parents and autistic children is complex. It may be shaped at one moment by the child’s communicative limitations, then later by the sensory and emotional upsets that can occur without warning.

“You never realize how much you want to experience the joy of parenting—you just assume it will happen when you have a child. And to have the challenges of parenting tenfold but to not have the rewards of sharing, really sharing, your life with your child is painful,” remarks Filley. She points to a fundamental difference between her experience and those of parents of non-autistic children: “I don’t know what it’s like to have a child who wants to please me.”
Autism has received increasing attention among researchers in the past two decades. The reason is simple: look at a graph plotting the rate of autism diagnoses over the past 20 years and the line crawls steadily upward, unrelenting. A condition that once was noted in four to five out of every 10,000 children is now attached to more than one in every 200 children. The crisis has drawn the media, policymakers and parents into debates about the one or many triggers for the disorder. It is an anxious, urgent discussion, and consensus has been slow to emerge.

Parenting an autistic child can therefore be a job that coaxes out the activist within. Filley and her husband searched widely for a physician to treat Damien for what they are convinced are important medical aspects of his disorder. They have pursued therapies still considered alternative, with names unfamiliar: chelation, sequential homeopathy. In attacking autism, they are tireless, for their motivation is the hope that there exists a true, unfettered Damien who can be released from this disability.

Still, something about such a fervent pursuit can pierce the heart of a mother.
Filley writes: “I live the balance between fighting and accepting daily. I try to show Damien that I love him no matter what while at the same time prodding for the joyful, responsive child he once was ... because I know he’s in there.”

Autism manifests differently in each person. “On the spectrum” has become a catch phrase among parents and professionals to refer to the belief that being autistic means widely different things for different people. Damien’s condition is called regressive autism, a phenomenon long discussed anecdotally but only recently receiving formal research attention.

For children like Damien, development proceeds across the first several months of life in what looks like a typical fashion. These babies begin the purposeful babbling that typically leads to words and sentences; they respond appropriately to other people; they use non-verbal communication. Then, around the second year of life, development loses its forward quality. In Damien’s case, the familiar baby babble turned into foreign arpeggios, and the friendly personality that was emerging turned inward. The couple’s little rock star baby, who loved his father’s guitar, began to be chased by something invisible—literally running through the day, self-soothing with hand-flapping, not speaking from his own toddler will but in echolalia, the repeating of phrases he hears, often at length.

And so, for Damien’s parents, the task is one of rescue. They are inspired by signs that their little boy is in fact improving, that the reaching is not in vain. Damien’s vocabulary is growing. He has begun engaging in some imaginary play—and at times responds to his environment in a newly connected way.

“We are going to work hard,” Filley says. “We’re watching our resources and we’re keeping in mind that we can’t give everything to this hope. And it is a hope. We know that every child is different and that this hasn’t been figured out. It’s kind of like a 50-piece jigsaw puzzle but you’re handed 500 pieces.

“We’ll just cross that bridge when we come to it, when, if he’s not recovered and we see kind of where he’s gonna stay, then that’s what we work with, and that’s who he is, and we love him.”

Even in the midst of these challenges, there are the hallmarks of a typical American childhood: the party at which Damien provided a solo encore of the birthday chorus. For Filley, there are leaps of mama pride just as every mother enjoys. Some are appealingly unspectacular, as when a preschool classmate yells “Damien, I’m gonna chase you!” and two little dudes run, happy. Others feel like momentous harbingers of recovery to come: “Where is Mommy’s nose?” The small finger appropriately points at Mommy’s nose. And again, “Damien, where is Mommy’s ear?” He is in there somewhere. He is here.
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