By Maria Finn Dominguez MFA '95
The loving closeness of child to family: We cherish it as the most complex and tender of personal connections; we find in it communication that is profoundly meaningful.
The families of one in 166 children, however, experience disconnection rather than engagement, and dissonance instead of understanding. These are the families who live with an autistic child, striving to overcome the obstacles posed by autism.
According to a recent report by NBC News, the number of children diagnosed with autism is fifteen times greater than a decade ago, when the rate was one in 2,500. One factor at work may be more frequent diagnosis by medical professionals, but the other reasons remain unknown. At times the disorder can be traced to genetics, but not always. Researchers also look at environmental factors, such as exposure to toxins and chemicals, even the presence of mercury in childhood vaccines.
But what is autism? Clinical psychologist Jan Drucker, a member of the Sarah Lawrence psychology faculty and a consultant to the Early Childhood Center, explains, “Autism is actually a spectrum of symptoms, and children who display some of these symptoms can differ greatly, but what unites them is difficulty communicating and connecting with other people.” Here are four Sarah Lawrence College alumnae who are united by the disorder, women whose lives intersect daily with the pain and challenge of autism.
They huddled in a hospital waiting room, Suzanne Wright ’98 and her family, on a cold March day last year, waiting for the diagnosis of her grandson’s condition. The doctor emerged to say, “He has autism”—and, Wright says, “our family’s journey began—a long journey, still in its early stages, yet already more exhausting and frustrating than we could have imagined possible. We watched helplessly as a delightful, apparently normal toddler lost his ability to interact with the outside world. It is as if he’d been kidnapped, or somehow had his mind and spirit locked in a dark hole deep within him.”
In the ensuing months, Wright and her husband, Bob, decided to take their support for their grandson beyond the family, starting an initiative they’re calling “Autism Speaks.” Their goal is to “plan a concerted national campaign to educate the public about autism, facilitate and fund the best research, motivate private and governmental resources, and, ultimately, find a cure for autism.”
Lauren Thierry Watkins ’81, who has produced a documentary called True Lives: Autism, shares the Wrights’ goal of public education. Rather than try to explain this condition medically, her film documents the day-to-day challenges faced by families of autistic children: pain and sorrow, financial hardships, and the strength gained from these children. The theme of disappointment—to find out your beautiful child will never lead a “normal” life—and the subsequent acceptance of this child are particularly poignant, because they mark her own life as well as those depicted in the documentary.
Being the mother of an autistic child (Liam, aged 7), Thierry Watkins says, “is like trying to accept a death in the family that society refuses to let you acknowledge: the death of your hopes and dreams for your child. The life sentence you as a parent now face is keeping him safe and warm and fed, and making sure that joy is in his life, however you can do that. But there is no socially installed grieving process. No sitting shiva, no Irish wake, no high-mass funeral. There is no Indian burial ground where you can feel the spirit of what might have been.”
Yet Natalia La Duca Aparicio ’93 was almost relieved when her son Sebastien, now 5, was diagnosed two years ago with Asperger syndrome, considered a disorder at the higher end of the autistic spectrum.
“We understood that Sebastien was a difficult child. He didn’t socialize well with children at his preschool. He frequently threw tantrums, and screamed if the lights were too bright, or at a noise no one else could hear,” Aparicio says. “I felt relieved to learn he had a medical problem, and that maybe this wasn’t just a ‘bad kid.’ I was also glad to know that treatment could help him learn how to utilize his strengths, while learning how to handle day to day life, and we are seeing an improvement.”
From the first moment, parents crave interaction and genuine connection with their newborn—and the need for this positive exchange is lifelong. But the parents of autistic children struggle for the simplest give-and-take. According to Aparicio, Sebastien is advanced in math, but has trouble understanding the nuances of social relationships. “He has trouble reading faces, he takes everything literally and he doesn’t understand jokes.”
Because a child like Sebastien has unique strengths and weaknesses, he needs tailored education and therapy. Brenda Finucane MS ’85 is the executive director of genetic counseling and research at Elwyn Inc., an organization that provides programs for children and adults with disabilities. She works with a large autistic population. “When it comes to autism, it is important to look for an underlying cause, as that can guide intervention. I spend much of my time going to school districts and working with teachers and therapists to customize educational plans based on an individual child’s underlying genetic diagnosis,” Finucane says. “For example, if a child’s autism is due to the genetic condition called fragile X syndrome, the school plan should not include forcing them to make eye contact. In contrast to children with autism of other causes, a child with fragile X does much better if allowed to initiate eye contact on his or her own. Nudging them could backfire, and they’d retreat further.”
Like teachers, parents must find ways to encourage without nudging. Psychologist Jan Drucker notes, “Some parents are close to their autistic child, but the closeness can’t be built upon because of communication problems. Other parents feel very shut out from their children who don’t respond to them.” If the daily life of a family is based on simple daily interactions, shared experiences and idiosyncratic patterns of communication, then how do the families of autistic children craft a life where there is so little connection?
“I responded to my grandson’s diagnosis with a frantic scramble to gather as much information as I could,” Suzanne Wright says. “What I discovered was profoundly discouraging. We had so many questions: Which therapies should our grandson have? How many hours? With whom? For how long? Who can give us the best guidance? What will be most effective? Unfortunately, we discovered the same thing thousands of families discover every year: There are no good answers.”
Wright’s initiative is part of her effort to find some good answers—and so is everything she does as grandmother to an autistic child. Jan Drucker points out that it’s the extended family —grandparents, aunts and uncles—who can provide essential support to the parents and create special relationships with these special children.
And Drucker then points out the impact of intensive intervention and hours of therapy: It affects school systems and social programs nationwide, she says. With such a drastic increase in cases, it’s not just families, but communities as a whole that need to understand the challenges of autism. “Remember how everyone in To Kill a Mockingbird made up scary stories about Boo Radley?” Thierry Watkins asks. “That’s because they didn’t know what his issue was. At the end of the book, they still didn’t know, but he turns out to have some pretty special qualities.”
In the meantime, every day brings more than 60 new autism diagnoses in the United States. “Many parents go to bed each night praying that one day their child will look them in the eye, smile, and say, ‘Mommy,’” Wright says. “My daughter is one of them.”