In His Own Time– On the Spectrum of Normal

It started in preschool, during the language assessments. They asked me to discuss Son’s results.  There was a concern, they said.

“When we showed him this picture,” the assessor said, showing me a picture of a father, “he said ‘Dad.’ But when we showed him the picture of Mom, he would only say…’Honey.'”

I relaxed. “That’s what my husband calls me,” I explained.

The assessor wasn’t convinced. “He should still say Mom,” she said.

I shrugged. I didn’t know what to tell her. My son was stubborn. The speech assessor suggested we go to the pediatrician for further evaluation.

Ever since early childhood, various teachers from preschool to kindergarten, on the lookout for autism or ADD, have expressed concern about my son. He got frustrated and cried easily. He didn’t make eye contact when talking(many speculations about this: autistic? lacks confidence? because it’s somehow inherited through being Japanese? [is that even possible?]). He needed speech therapy. His motor skills, fine and gross, weren’t so good. He puts objects into his mouth. He doesn’t like to get his hands dirty (neither do I). He puts his hands over his ears during music class (well, have you heard music class for 4-5 year olds?)He doesn’t appear to be listening, ever. He is obsessed with trains.

Outings always had to be shorter than they were with Eldest, because Son couldn’t tolerate crowds. He liked to be at home. Any variation from routine threw him off enormously. Once, when he was four, we cleaned up the living room, which was a mess of railroad tracks and his sisters’ toys. He threw a HUGE tantrum, weeping inconsolably, saying, “I liked it before!” Things that were minor annoyances to other kids turned into what seemed like a life-and-death situation for him.

Okay, when I list all these things, I can see why they were concerned.

He was evaluated at school and the pediatrician and at Children’s Hospital. The speech therapist at Children’s, when he was four, really did expect something to show up on the tests, she said. But he was normal. “There’s something different,” she told me. “Keep an eye on it.”

When he was young, he often had a runny nose. I took him to the pediatrician. “Allergies,” he decreed. I took him to the allergist. Nope, no big allergies- a minor one to mold. She referred him to the ears-nose-throat doc, who diagnosed him with enlarged adenoids and tonsils in the hallway of his office, before we even sat down. Those came out, and his speech improved.

When he started kindergarten, he had trouble sitting still, even though he’d been to pre-K and developmental kindergarten . “He cries when I tell him to work,” his teacher said. “What should I do?”

“Tell him if he doesn’t work, he has to go to the office,” I said.

He started doing his work.

Cadillac and I tried to improve his motor skills.  Building with Legos. Picking up beads with tweezers. It was very difficult; he stopped trying after about thirty seconds.

We tried to get him involved in sports to give him better large motor skills. At T-Ball, he had to be told where to stand to bat. Every single time. At practice and at the games. He would face toward the backstop. He stopped trying to catch the ball after it hit him. In mini-golf, he held the club upside down and insisted on doing so after correction. If Cadillac tried to get him to catch a Nerf ball, he would simply turn away. When trying to dribble a basketball, he would sort of slap at the ball. It wouldn’t bounce. He would give up.

Yet, we noticed some other positive things that dispelled our worries somewhat.

During class or at home, he would appear not to be listening. But when the teacher asked him what they were discussing, he was able to answer the questions.

At home, let’s say we were watching a shark documentary. He’d be off in the corner, doing his own thing, yet would be able to recite facts from the documentary and relate those facts to other ocean-facts. So he didn’t just repeat– he could analyze.

One Christmas a few years ago, Santa (grandma) brought him a huge jar of Nutella in his stocking. He ran to the kitchen, got the Sharpie, and carefully and neatly lettered his name on it.

So he could write neatly– if it mattered to him.

He has always been very loving and engaged with his family and friends. He notices distress and rudeness. In other words, he has always picked up on social cues.

Last week, I took him back to Children’s for a speech assessment. Sometimes when he talks, he draws out a sentence by repeating a syllable. For example, “The roses–es–es are red.”

His teacher last year mentioned it and said he did it a lot during reading-aloud. Sometimes, I’ve observed him talking to people, and they look away or start talking over him. Sometimes he doesn’t even finish his sentence. It hurts my heart. We didn’t know if it was like a stutter, which you are not supposed to point out; or a habit, or how to address it.

He went through an hour-long battery of verbal tests. The therapist heard it, too, but we both noticed he has an exceptional vocabulary, can imitate modulations, and easily made up complex sentences about the pictures she showed.

“Usually,” the therapist said, “a stammer will come at the beginning of a sentence. His is at the end. It’s not the same. The question is, is it a habit, or not? If it’s not a habit, drawing attention to it could worsen it. But if it is a habit, it can be modified.”

“Maybe it’s like saying ‘um’,” I said.

“I think so,” she said.

He didn’t know he was doing it. I asked her if recording him reading aloud would work, so he could catch it. She said yes. We devised some exercises to try, with a contingency plan if those didn’t work.

Immediately, he became aware of the habit. Even now, a few days later, he is doing it less. I really think it is like “um.” At Toastmaster’s, where you practice public speaking, every time you say “um,” or “uh” or whatever, you have to pay a fine. Thus you break your habit.

After the therapist session, I thought back to all the times when he seemed to not be on the normal spectrum of development, and how much he’s progressed. Early on, I continually questioned my parenting. Am I doing the right things to help him? Is there more we could be doing? Things have improved tremendously as he’s gotten older. He has friends. He can dribble a basketball. He can swim. He can ride a bike. He loves to fish. He loves target practice with his BB gun and is super-vigilant about safety guidelines. He loves school. He loves playing board games. He puts together large Lego models and robot kits on his own. He loves reading. He’s still way more bookish than physical, but that’s fine. All we ask is he keep his body healthy and active. He still doesn’t like crowds (really, who does?) He has no memory of his train obsession or his frustrations.

And, most important, he is extremely kind and helpful– if a kid drops a container of pencils, he is the one there helping to pick them up. He offers people refreshments when they come over. He is generous. I have to tell you this story from some years earlier. I don’t know if I told it before. There was this kid at school who wasn’t very popular. Kids said he smelled bad, like he didn’t bathe. His parental figure was known as a kook. He got suspended for fights sometimes. Not a terribly happy kiddo.

Anyway, we were at the grocery store and my son sees this kid. This kid has his head down, way down into his jacket like he’s just praying he’ll disappear. But Son walks up to him, grasps his hand, claps him on the shoulder, and says, “Hey, Old Buddy, how ya doin’?”

And this kid got the biggest, glowing grin. He didn’t say a word back to Son, but clapped him on the shoulder too.

The kid walked off with his parents. “How do you know him?” I asked. The kid was older.

Son shrugged. “From school,” he said.

It sure seems like in today’s society, no leeway is allowed for late bloomers. Was he someplace on the autism spectrum? Did he just mature out of all these red flags? Or did the fact we kept badgering him to fall in line with how we wanted him to behave simply mean that he did so, eventually? I don’t know. We did all we could to help him along, but no amount of our prodding substituted for his maturity, in his own time.

I remember reading part of Temple Grandin’s autobiography a few years back, where she said she thought her autism symptoms would be a lot worse if her parents didn’t make her sit through church, wait for her turn at board games, and require that she be well-mannered. These skills are important for any kid to become a well-socialized adult.

So here are Temple Grandin’s Top Tips for Parenting, most of which apply to any child:

1. Get professional services like Early Intervention and Applied Behavior Analysis in place for your child as soon as you suspect he or she may be autistic.

2. Spend a lot of time playing board games (like checkers and Parcheesi) that have rules and involve taking turns – something Grandin says autistic kids have a very hard time doing.

3. Limit TV and video watching to an hour a day and focus on broadening your child’s world by exposing them to lots of different situations and experiences.

4. Match learning strategies to your child’s thinking pattern and areas of strength. Grandin identifies three different types of autistic thinking: Verbal Logic, who think in word details (they often love history, foreign languages, weather statistics, and stock market reports and aren’t good drawers); Music and Math thinkers, who see patterns (these people often excel at math, chess, and computer programming and are interested in music and play it by ear); and Visual thinkers – those like Grandin, who think in photographically specific images. (These thinkers are often good at drawing, other arts, and building things with building toys such as LEGOs. Many children who are visual thinkers like maps, flags and photographs.)

5. Increase your child’s social interaction by getting them involved in shared activities like science or computer clubs, horseback riding classes or interesting hobbies that could potentially turn into a career for them. Realize that one-on-one interactive relationships, while rewarding for you, may not feel the same to your autistic child.

6. Have clear and realistic expectations for your child’s behavior. Grandin is concerned that today’s looser social structure harms autistic kids far more than other children because of their inability to pick up on social cues.

7. Experiment with your child’s tolerance for different foods. Food problems with autistic children are frequently texture-related, so you should offer them many types and varieties of foods. Special diets like gluten-free or dairy-free are often successful in improving young autistic children’s overall functioning.

8. Be logical and thoughtful in how you use medication with your autistic child. Grandin believes that many powerful drugs with serious side effects are being given out to kids way too casually. Don’t be tempted to use strong medications to make your child a “teeny bit less hyper.”

9. Make sure your child gets lots of physical exercise. Grandin can’t emphasize enough how important this tip is and notes that the rhythm of horseback riding seems to be very soothing for autistic children.

10. Give your child lots of work experience, starting early. Grandin recalls that she had many jobs during her childhood including sewing dresses, cleaning out animal stalls and feeding livestock, and carpentry projects.

11. Get help! Caring for an autistic child 24 hours a day can be exhausting and emotionally draining. Grandin uses examples from her own childhood, noting that she had a nanny, lived with her aunt and uncle during some summer vacations, and also went to boarding school. Your family may not have those resources, but consider your options. Spending time with specialists, friends and family members not only gives your child new perspectives; it also gives parents much needed time to recharge.

Other resources:

http://abcnews.go.com/Health/extra-disorders-explain-autism/story?id=15407183#.UBbKU6OgHDU