This article first appeared in the St. Louis Beacon: July 15, 2008 - One summer about 30 years ago, when Anne Spollen was 15, she first met “the silent, green-eyed boy who moved in next door.”
“He doesn’t speak,” his mother whispered to her. “No one knows why.”
She became friends with Daniel, and learned the rules that seem to dominate his life:
“Daniel did not like red things. He did not like anything that ‘crunchled’ – a word we made up together to describe the sound that made him put his hands over his ears (cellophane wrappers, paper bags, dried leaves). ... He did like graham crackers, pictures of cars, and walks to the oak tree and back. Never farther, never a different way. ... We walked the same path each time, and the routine seemed to comfort him. He would hold out his hand, touching my pinky twice to let me know he wanted to take our walk. I read to Daniel; I tried to teach him the names of colors, but he would not look at the book when I asked him to look. Daniel looked at the book when he wanted to look.”
Daniel soon moved away, and it was not until Spollen was in college and taking an introductory psychology course that she came across the word “autism,” and realized it described Daniel’s behavior. At that moment, she decided she wanted to “learn more about children like Daniel. I wanted to become a classroom teacher. That had been Daniel’s silent message. ... That summer when I believed I had been teaching Daniel the names of colors and the types of cars, he had been teaching me that the kind of truth you learn through time and silence is the kind that matters the most.”
Spollen is one of about 45 writers -- parents, siblings, teachers, psychologists, physicians, researchers and social workers as well as people with autism -- who contribute first-person stories to an absorbing, very human new book, “Voices of Autism.” (LaChance Publishing, 243 pages, $16.95). All profits from “Voices of Autism” will be donated to The Healing Project, a not-for-profit organization dedicated to the support of people with chronic and life-threatening illnesses. (See www.thehealingproject.org )
Approximately 1.5 million Americans are affected with some form of autism, which is defined by the National Institutes of Health as “characterized by impaired social interaction, problems with verbal and nonverbal communication and unusual, repetitive or severely limited activities and interest.” The diagnosis of autism has increased tenfold in the past decade, for reasons that are still in question. To find answers to the puzzle of autism, Congress passed the $1 billion Combating Autism Act for autism research and intervention.
“The autism spectrum,” writes St. Louis-based early-education teacher Linda O’Connell in “Voices of Autism,” is “a huge imaginary arc along which children who have the disorder exhibit symptoms from mild to severe. My first introduction to autism happened many years ago. Chris screeched and wailed on his mother’s lap as I spoke to parents at orientation. His mother apologized and said she didn’t know why he behaved as he did.”
O’Connell, one of several writers in “Voices of Autism” from the St. Louis area, discovered that it was difficult for Chris to sit for any length of time. “His disruption created chaos” in her pre-kindergarten classes, she recalls.
Finally, O’Connell writes, “I came to the conclusion that chaos could actually be a learning tool for the entire group. I explained to the class that Chris couldn’t help being noisy and he needed to move. ... At some point every day – either when my legs gave out, or Chris became too vocal – I’d close my book ... and shout, ‘Okay, Chris, run!’ Running was his favorite motor activity. The children watched him zoom around the room flapping his arms. “One day I shouted, ‘Okay, it’s Chase Chris Time!’ He screeched with delight; it was the only time his face registered happiness. He laughed and ran like the wind as the students giggled and ran around the very large classroom in every direction trying to catch him. ...
“Every single student was able to interact with Chris, and before long he wasn’t viewed as being different. He was viewed as being the fun kid in class. The special education team was prepared to assign him to a self-contained classroom, but after observing peer interaction and my consistent approach with him, they decided on inclusive education; they mainstreamed him into my class.
“Many days I went home exhausted, but at the end of the school year I decided it had been worth every ounce of energy I expended documenting his language development and social interaction skills. ... In May, the specialists noted that Chris had achieved most of his goals and benchmarks, but most of all his language development had improved from 90 percent echolalia (simple repeating verbatim what another person said) to 50 percent spontaneous typical language. My greatest reward!”
The book is filled with examples of unorthodox teaching methods, with experiments that often failed but sometimes succeeded in breaking through to children with autism. Gradually, over the past 20 or 30 years, education for children – and adults – with autism has improved. Denise D. Resnick, the mother of a child with autism and the founder of an autism research and resource center, writes in the foreword:
“In reading the stories found in ‘Voices of Autism,’ what becomes clear is the heterogeneity and complexity of the disorder. There are no easy fixes. . .no room for dogma. But even without identifiable causes and with no known cure, there is still hope. Our kids can and do make progress. They can develop their potential, especially with intensive early intervention. And they can continue to make progress and advance at every age.”
Perhaps the most interesting stories in the book are written by people with higher-functioning forms of autism, such as Asperger’s syndrome. Some people with Asperger’s speak fluently. Others have difficulty with speech. Michael Johnson of University City writes:
“I am 14, and I have autism. Some say that I am nonverbal, but I can communicate. I can say a few words that people who know me can understand, but I can’t talk fluently. I can type with facilitation, but even that takes longer than I would like. Not being able to talk is very frustrating. My mind knows what I want to say but my lips, tongue and breath can’t make it happen. ... People say that talk is cheap, but to me it has immense value. I wish I could afford it.”
Michael, who attends regular classes in the University City schools, is enrolled in the Giant Steps of St. Louis program, an organization whose goal is to “empower children with autism spectrum disorder to participate fully in all aspects of life, including home, community and education.” Students in the program are assigned a full-time assistant who helps them with classes and other aspects of development. (See www.giantsteps-stlouis.org)
Many of the stories in “Voices of Autism” come from parents who have struggled for years to help their children find acceptance and fulfillment, refusing to accept what was once the prevailing wisdom that people with autism were probably better off in institutions. Some of the children have grown into adulthood. Some have college degrees. Some have jobs.
Lauren Stern, who is 25, has Aspergers’s syndrome and attention deficit disorder. Her mother, Robin Silverman, a former St. Louisan, writes that Lauren recently turned down an offer of employment because she already had “a job she loves” -- taking care of dogs at a pet center in suburban Kansas City. That Lauren would in effect have a choice of jobs, her mother says, is “truly amazing.”
“Why amazing?” she asks. “You have to know her job history.”
One of the engaging aspects of “Voices of Autism” is that the writers, including some with the disorder, are able to deal with the often painful struggle of autism with moments of humor.
Her daughter, Silverman writes, has “multiple learning disabilities, impaired social skills and distractibility. Early on, Lauren worked in a church childcare program. It seemed like a good fit – not too demanding and run by kind people. Lauren likes children, has a lot in common with them. She played with the kids, helped feed them their snacks and did other small chores. The job went fairly well until one day when Lauren got angry with one of her charges for not getting up from his nap quickly enough and dumped him out of his cot onto the floor.
“So much for childcare.”
Silverman goes through a short list of minor disasters. Then, she writes, “We got lucky. ... The stars aligned just right; she has a job coach who knows how to develop jobs for people with disabilities, work she loves, and a supervisor who gives her the direction she needs to do the job well. We once worried if Lauren could handle working 15 hours a week. She now works 30.”
A personal note: I know Lauren and her parents, and probably would not be aware of “The Voices of Autism” if I did not. Lauren and my nephew, Stephen Rouse, who has Down Syndrome, are neighbors and friends. They are among 14 young people with disabilities who participate in an innovative independent-living program based in suburban Mission, Kansas, called the Mission Project. It was founded and is run by a group of parents who refused to accept the idea of putting their offspring into institutions. The young people live in apartments in the same sprawling low-rise apartment complex, located across the street from the police station and within close walking distance of stores and a well-equipped recreation center. They have social and educational activities scheduled for almost every day of the week. Most of them have jobs. They lead busy lives.
Robin told me, “I think the mix of disabilities is valuable because not only does every individual have different strengths and limitations, each disability has different strengths and limitations. For instance, those with Down Syndrome tend to be more sociable and make friends more easily than those on the autism spectrum or other categories.
“We wanted Lauren to lead as ‘normal’ a life as possible. The Mission Project has helped her achieve that -- she has a steady job she loves and a community of friends. And, as we'd hoped, she's risen to the challenge of being independent. She's much more capable, self-assured and mature than she was when she first moved in. Her growth has helped ease our biggest fear (one that haunts every parent of a child with disabilities): What happens to her when we're gone?” (See www.themissionproject.org )
For Robin Silverman, the best time of the day comes every afternoon at 4:15 p.m, when her phone rings.
“I know it’s Lauren, calling to give me the doggie report. “ ‘Vito was here today,’ she says of one of her regulars, a pug. ‘And I got to give him his ice cream.’ ”
Harper Barnes is a regular contributor to the Beacon. His latest book, "Never Been a Time," was just published.