Living With Autism

Nobody knows yet exactly what causes it, or why it occurs more in certain income levels, or even quite what defines it, but autism becomes more of an issue with each passing year. It may be in your family or church or neighborhood, and your children have questions. Two well-received novels and one picture book may be helpful conversation-starters. On Friday, Lord willing, I hope to feature two books for teens and up.

Rules, by Cynthia Lord. Scholastic Press, 2006, 240 pages. Age/interest level: 9-12 (2007 Newbery Honor book)
Mockingbird, by Kathryn Erskine. Philomel, 2010, 232 pages. Age/interest level: 9-12 (National Book Award finalist for children’s literature)
How to Talk to an Autistic Kid, by Daniel Stefanski. 2011, Free Spirit Publishing (Minneapolis), 41 pages. All ages.

Catherine’s life is complicated by her autistic little brother David. Because both parents work (though her mother works at home), Catherine is at least a part-time caregiver, and the only way she can manage that role is by writing simple, concise rules for David. Such as “No toys in the fish tank,” or “It’s okay to hug mom but not the clerk at the video store.”
At the beginning of the story, Catherine is facing a summer of care-taking, with imperfect support from the parents (at least it seems that way to her) and no support at all from her best friend, who’s spending the summer elsewhere. But a new girl, Kristi, moves in next door and Catherine longs for some down time with a new friend. And maybe a few romantic sparks with the local dreamguy, Brad. But how to explain David to them?

Her interest in “normal” kids blinds her at first to a real relationship budding almost under her very nose, between herself and a teenage boy she meets at David’s therapy sessions. Jason is paraplegic, and also mute. His exact “condition” is not explained, and Catherine shows little curiosity about it. (Unlike me!) But the author may want to stress that even though Jason has certain disabilities he’s a regular teenager under it all, by terms sharp and sulky and as needful of friendship as Catherine is. They communicate through word cards; Jason already has a notebook full of them, and expresses his thoughts by pointing at different combinations. Catherine uses her artistic ability to design more cards for him, covering thoughts his mother and therapist would rather he not express.

The author has an autistic child of her own and surely knows what she’s writing about when David tries to bridge the gap between himself and normal people. For instance, he apologizes via Arnold Lobel’s Frog and Toad Are Friends, which he knows by heart: “I’m sorry, Toad.” Because he can’t keep Catherine’s rules, apology is often called for. But Catherine is actually better at understanding David than she is at understanding herself, and the book’s main tension comes from trying to keep her own rules for “normal” from conflicting with life as it is. The reader (this reader) gets a little impatient with her, reflecting her impatience with David: why doesn’t she just explain to Kristi about her brother, instead of trying to hide him? Or, when Kristi invites Catherine and Jason to a dance, why not just mention ahead of time that Jason is confined to a wheelchair? But these are the kind of things 12-year-olds have to work out for themselves, and Catherine does, with a little help from friends. (The parents aren’t much help, but in children’s literature, they usually aren’t.) The romantic paring-off seems a little intense for pre-teens, but maybe not: I can remember seventh-grade intrigues even back in the early 1960s.

The main character in Mockingbird is the one with the syndrome, though in Caitlyn’s case it’s Asperger’s, not autism per se. Her story is also about dealing with reality from a skewered point of view, but in her case reality is more sensational. Her mother succumbed to cancer a few years earlier, leaving Caitlyn with a dad and her older brother. Devon is an outstanding boy in every way, except for being dead—one of three fatalities in a school shooting. The shooting took place only a month or so before the story opens, making you wonder if the drama of the situation is going to overwhelm the subtler points of Caitlyn’s Asperger’s. But she serves as a mirror to her small community, helping us see their trauma from a new angle.

Because of her condition, Caitlyn doesn’t process emotion very well and she’s apt to take statements literally. Some of her misinterpretations seem off-base but turn out to be very apt. Hearing the word closure from her therapist Mrs. Brook, she decided that what she and her dad need for closure is to finish a chest that Devon began as an Eagle Scout project. The chest has been sitting untouched in their living room ever since the Incident, an obvious representation of his departed spirit. “My dictionary says cavernous means filled with cavities or hollow areas. That’s what’s on the inside of Devon’s chest. Hollow areas.”

Caitlyn’s new friend Michael is another victim, who lost his mother in the school-shooting incident—and so is Josh, the bully, whose cousin was the shooter. Caitlyn eventually comes to terms with Josh in her own way and he rather too easily makes friends with Michael. Dad finally consents to finish the chest, and the final scene is a memorial assembly where everybody finds closure.

The story is predictable and the ending is a little too pat, but Caitlyn does give us an idea what life is like for an Asperger’s child—an unpredictable blend of naiveté and precociousness and unexpected pitfalls. After belching her ABCs for 7-year-old Michael and his friends, she observes with pleasure, “I feel like Snow White, because now I have a bunch of dwarf friends who love me.” But a few days later, after messing up—again—and told once more to work a little harder at it: “My whole day is Work At It. Sometimes I don’t want to Work At It anymore. Like when I FINALLY get my own friend and Mrs. Brook TAKES HIM AWAY FROM ME. It’s just—too—HARD! It’s—NOT—FAIR!”

Daniel Stefanski—a real 14-year-old–has probably had his frustrating moments also, but his mission is to introduce the kid-on-the-street to kids like him. “Not all people with autism are exactly alike, just like not all kids or teenagers are exactly alike. Many people with autism share some characteristics, though.
“1. We have at least some difficulty with communication.
“2. It’s hard for us to understand social situations.
“3. We tend to get really interested in one thing, which makes it hard to think about other things.”

These basic characteristics are explored in the rest of the book, illustrated with simple drawings and dialogue balloons, all designed to help us understand each other. Daniel’s tips are down-to-earth and practical and obviously come from his own experience. When your autistic friend is getting over-excited about his latest rave, say something like “I’m interested in what you’re saying, but could you keep your voice down?” Or, “That sounds pretty cool, but would you mind if we change the subject?” Don’t be surprised if he wears the same style of clothes every day or engages in odd ticks. If he stands too close when talking to you, just ask him politely to step back. Sometimes the outward mannerisms seem so strange we forget there’s a real person in there, which only exacerbates the difficulty in relating. Daniel helps kids his own age (and younger—and even some grown-ups!) understand that he has feelings and ambitions, likes and dislikes, and may enjoy talking about them. If he gets carried away, a simple reminder may be enough to tone it down. The more you learn to pick up on his signals, the better he’ll grasp yours.

Questions to think about:
• How does David’s inability to keep his sisters rules reflect our inability to keep God’s rules? How are we like David in our relationship to God? How are we like Catharine?
• How does Caitlyn have trouble communicating with people? (Name at least three ways) Which are due to her Asperger’s and which might owe more to her family tragedies?
• Do you know a boy or girl like Daniel Stefanski? Did you ever feel like you couldn’t communicate with him or her? Name two specific ways that Daniel’s advice can help with that.

For more books about kids dealing with difficulties, see “Living Like a Refugee” and our reviews of Heart of a Samurai and the Homelanders series. For help with learning disabilities see Emily’s post on Dyslexia.

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