A different kind of normal
Mom and son share autism diagnosis
Friday, July 25, 2008
When Amy Fritsch talks about her 5-year-old son, Ben, she tends to gush.
"Isn’t he adorable? That R2-D2 he got for Christmas? He carries it everywhere, even sleeps with it." She grins with a look of helpless indulgence. "I just love him."
Ben climbs on her lap and snuggles up. "Mommy," he says with one hand resting lightly on her cheek, "spiders are arachnids. Can I have some apple juice?"
Permission granted, he scampers to the kitchen to serve himself.
This is not the image most people have of autism.
But Amy and Ben Fritsch both have autism spectrum disorders and are living a life most people wouldn’t expect. And as autism research points increasingly to a genetic component, more and more families may come to look something like theirs.
Amy, a high school English teacher, was diagnosed with Asperger syndrome in 2006 after suspecting for years that her brain was different from the people around her.
Asperger syndrome is an autism spectrum disorder characterized by difficulties with social interaction and narrowly focused interests. Unlike other spectrum disorders, Asperger’s does not involve speech or mental delays.
Mom’s special interests
At work, Amy teaches Shakespeare and Camus, but her real passion is television. She owns countless VHS tapes and DVD collections of the shows she has loved since she was a teen, including Scarecrow and Mrs. King, Dr. Who, Wonder Woman and Greatest American Hero to Firefly, Stargate SG-1 and, most recently, Bones. She can answer any question about anyone in those shows:
"How old is Emily Deschanel (of Bones)?"
"How tall is she?"
"How much does she weigh?"
If Amy wants to find information on a particular episode of, say, Scarecrow and Mrs. King, an adventure series that aired in the mid-1980s, she consults the index of episodes she keeps on her flash drive, her home computer, her work computer and listed out in tiny handwriting in a 3-by-5-inch notebook in her purse (friends have dubbed this "The Book of Knowledge"). She writes and reads fanfiction about the characters in her favorite shows, and keeps in touch via e-mail, instant messaging, blogging and conferences with a far-flung network of other fans.
In face-to-face interaction, Amy does not appear to have major social difficulties. She holds conversations where she takes turns talking and listening to the other person, remembers to divide her attention between a speaker’s eyes and mouth and observes normal parameters of personal space.
But jokes must generally be explained to her, since she envisions words as she hears them— like mental closed-captioning—and thus misses double-entendres based on words that sound alike. Friends sometimes tell her, "Don’t see the words, listen to them," after telling her a joke. She closes her eyes briefly in concentration, then opens them with a delighted laugh. "That’s funny!"
Other little things betray how her brain is wired to classify the world into two opposing extremes.
Her opinions come out bluntly; as she says, "I don’t have a lot of filters." An avid baker, she can reel off dozens of cookie and cake recipes. But suggest that she add mini-marshmallows to a cookie bar recipe? She recoils in genuine horror.
"No! Marshmallows are disgusting!" Or molasses to ginger snaps? Same response. She knows, in the abstract, that her dislike of marshmallows or molasses is a personal preference, but in truth she believes there can be only one reasoned opinion on these topics.
A different childhood
As for the social skills that appear ‘normal,’ "I learned these things by rote," she says. As a child in southern Illinois, she explains, she was so focused on living by the rules that she couldn’t understand why her peers didn’t. She wanted to set up the toy house just like it was shown on the box and would never make the little figures "talk" to one another. "They’re plastic. They don’t talk," she says.
One particularly mystifying issue in Amy’s childhood was lying.
"I had no comprehension of lying," Amy says. "I didn’t know why someone would do it. I didn’t know how to tell when someone was doing it. I was an easy mark."
Summer vacations were a source of bewilderment, Amy says. "All of a sudden, for three months, they don’t let you go to school. They don’t let you." So in the summer, Amy checked out books from the library and created lesson plans for herself. When she was 13, one of these was a sign language book.
"I set goals for myself every day and taught myself sign language." This knowledge eventually led her to become an interpreter in college at Southern Illinois University. She met Jody, another sign language interpreter, and they married.
When Ben was born five weeks premature, just 10 months after sister Elisabeth, Amy and Jody had already settled into a routine with Jody as the stay-at-home parent and Amy supporting the family with her teaching job.
Elisabeth had been a happy and communicative baby, but Ben was more sensitive. Amy says that Ben would gaze deeply into her eyes when she nursed him, but woke up screaming if anyone touched him while he slept.
By the time Ben was 2, he had a small vocabulary of 10 to 20 words.
"Every time he gained a new word," Amy says, "he lost one. He wasn’t really learning to talk; he didn’t really understand English."
Ben is diagnosed
Ben started receiving speech therapy through Early Intervention, and the Fritsch family began a process that would culminate in Ben’s diagnosis with autism.
Autism is diagnosed in one in about 150 children born, affecting between 1 and 1.5 million Americans.
As Ben received therapies to help him learn to speak and deal with his sensory issues, Amy and Jody dusted off their sign language skills and began signing to Ben and each other whenever they talked. He began to sign back and then began to speak.
At 5, Ben loves frogs and turtles ("Reptiles are oviparous," he says with wide, solemn eyes and slow, careful pronunciation. "That means they lay eggs.") He shares a bedroom with 6-year-old Elisabeth, but keeps his extensive collection of Thomas the Tank Engine toys in a bin in the living room.
Ben’s fascination with trains and reptiles is not unusual in boys his age, but Amy and Jody see in these interests the emerging features of a bright, autistic mind.
Ben has a high-functioning autism (that is, autism in people of average or above-average intelligence) that makes transitions difficult for him, makes getting his attention quite challenging much of the time, and that shows itself, as it did in his mother, in his rigid and highly literal interpretation of rules.
For instance, one day last winter, Elisabeth and Ben were watching a family friend cooking in the kitchen. The friend noticed the children getting closer to the stove and told them sternly, "All children must stay at least 12 inches away from the stove at all times!"
Elisabeth took a big step backward. Ben went off to find a ruler.
Communicating can be tough
One of Ben’s most noticeable struggles is making himself understood. His speech is fraught with irregular word order and word choices, and often rendered unintelligible by his unusual pronunciation and inability to make certain sounds.
"He is very patient with helping someone figure out what he’s saying, and saying it again and again, or differently, or showing it." Amy’s smile is proud and a little sad. "(Elisabeth) translates well, but there are still the things where we just can’t understand."
Elisabeth shrugs when asked about her brother’s quirks. She is the kind of big sister who makes sure, when riding in someone else’s car, that Ben will have a booster to sit in. "I want him to be safer," she whispers.
Amy has certainly worried over Ben’s difficulties with transitions and his communication struggles, but in the last couple of years, she says, she enjoys watching the emergence of a boy so much like herself.
Some parents of autistic children are focused on finding a cure. In this family, the focus is more on finding a niche. Amy’s is the online world of fandom; Ben has years to search for his.
"My brain is just wired differently," Amy says. "And so is Ben’s. He’s just like his father on the outside and just like me on the inside."
Baby pictures of Jody in the family’s hallway photo gallery do bear a startling resemblance to the little boy building a train route down that same hall. Jody meets life in a family that is half-autistic with equanimity and a sense of humor.
"I’ve always been weird," Jody says with a lopsided grin. "It’s what’s normal around here!"
The stay-at-home dad and former sign-language interpreter is also a part-time electrician, the kind of person friends and neighbors call when something needs fixing. In high school, he says, his parents got used to him bringing home friends and girlfriends who were in some way different.
"They would ask me, ‘Is that the one who can’t hear or can’t see?’ "
Jody, a Darien native, started learning sign language from deaf friends at Hinsdale South High School. Now when he’s not shuttling the kids between home and school or re-wiring a friend’s kitchen, he reads sci-fi paperbacks and plays computer games.
Being normal is just not a priority in the Fritsch family, Jody says.
In their house it is OK to fixate on one thing and talk excitedly about it for a good long while. No one looks askance at the happy flapping of hands or at Ben’s bowl of cereal for breakfast, lunch, dinner and snacktime. If his eyes do look off to the side as he turns himself on the Sit-n-Spin, his slight smile is mirrored on the faces of his parents.
Here at home, this is normal.
Juliet Martinez is a freelance writer living in Chicago.