April 1, 2013 Features

Facing Up to ASDs

Two mothers struggle to understand the minds of their sons on the spectrum—and to accept the diagnosis. Honest guidance from SLPs makes all the difference.

Calvin ... Continued

by Kellie Rowden-Racette

Holding handsIt was Calvin's first birthday when I really knew something was different. It was his party at our house—there were babies, toddlers and parents everywhere. Toys and Cheerios and smears of frosting were strewn across our floor, and all the children were exploring and checking each other out happily. But not Calvin. He was sitting at the group's edge and staring into the distance. I followed his gaze: He was watching a table fan in the adjacent room. When I tried to turn his attention to his friends or a toy, he'd glance at me briefly and then go back to the fan.

"Does he know his name?" asked our pediatrician at our next appointment. "Does he acknowledge you?" Yes and yes. Even though Calvin wasn't the cuddliest of babies, he knew his name and looked into our eyes with pure affection. He knew us, was absolutely beautiful and always seemed to be thinking about ... something. "I don't think you have anything to worry about then. He's just goes to the beat of a different drum."

Still he wasn't walking, nor was he talking. By 18 months, he was already in early intervention for physical therapy and by 22 months for occupational therapy. He was making progress, yes, but the thought that something was wrong persisted. Most disconcerting was the silence. We kept asking our doctor what it meant. He told us (well, me) that I was a nervous first-time parent; boys develop more slowly and he would come around. Finally, a month before his second birthday his occupational therapist mentioned that he had limited eye contact with her. That he had repetitive play patterns. That we should get him checked out by a developmental pediatrician.

That he might need to be screened for autism, she said.

Enter SLPs

The diagnosis was just as everyone describes: a kick in the stomach. I had been researching autism symptoms online for weeks at that point and thought I was prepared, but the words hit me hard and hit my husband even harder. "Your son has what we call Pervasive Developmental Disorder, Not Otherwise Specified, which is a form of autism," said the developmental pediatrician. "He needs speech and special education services right away."

My house became a three-ring circus. I put any semblance of a freelance writing career on the back burner, as a parade of early-intervention specialists came to our house for 20 hours a week to work with Calvin. I'll never forget the first time our speech-language pathologist, Melissa, came in and began reading to Calvin. I was mortified and, quite frankly, insulted. Did she think I had not been reading to him since the day he was born? Did she think I was an uncaring parent who never got down on the floor with him to try to play with him or even just reach him? Who was this woman?

But after a couple of weeks, I began to catch on. She was forcing the communication whereas I had been filling in the communication for him. It was such a subconscious, mothering instinct that I hadn't realized how much I had been enabling him. It was so hard to watch him with her at first. He wanted to play with her, but I could tell she frustrated him. Why wouldn't she just do what he wanted? Why did he have to tell her? I learned that it was because she was teaching him to communicate. She made him find his voice, and she made him use it. Once I realized what was going on, I was on board. And then, four months later, he spoke. And then he spoke sentences. His first sentence came out as clear as day: "I want more crackers now. Please." He was almost 3 years old.

Today Calvin is in fourth grade in a mainstream classroom. He has an IEP, still struggles with pragmatic language skills and has some learning disabilities and attention deficits that keep us on our toes. But thanks to the hard work of his early intervention team, he is verbal—very verbal. In fact, we often laugh when we remember our fear that he would never talk. This year he joined the fourth grade chorus, has learned to dive off the diving board and makes friends wherever he goes. Because of him, I have learned to be the kind of parent I never imagined I could be. I've become patient, tolerant and appreciative of all the milestones, small or large, as they are hard won and always meaningful.

So the days of me losing sleep, wondering if he would ever be verbal, are gone. But wondering what will happen in his future has taken over. As hyper-aware of his struggles as we are, we look toward the next steps—middle school, high school—with apprehension. Luckily, experience has taught me that by staying the course, it will be fine—he will be fine, we will be fine. Also as a result of our early experiences, I have become a passionate and sometimes outspoken advocate of early intervention and speech-language pathology. As I researched this issue's article about college programs for students on the spectrum (see "Spectrum of Opportunities"), I was heartened and so pleased to see SLPs populating the programs forming today. With their help, I know the possibilities for his future are wide.

Calvin's 10th birthday is coming up this year and he's already planning his party. He wants to have a rock climbing birthday party or a pool party. It changes daily, but we have a few months to decide. But to think how far he has come since that first birthday party, and how much he is looking forward to inviting his friends to celebrate this one, only proves to me that we are doing things right.

Kellie Rowden-Racette is print and online editor for The ASHA Leader.

Minding Duncan

by Bridget Murray Law

"Duncan tends to crave activities such as spinning and swinging ... He frequently 'barges in' to a group situation. He tends to communicate better with adults in a 1:1 situation. He repeats himself often and his speech is notable for nonsense words and 'jibberish' when he cannot think of the correct words. He often has difficulty answering questions and following directions. His responses are often tangential to the conversation. He gets 'stuck' on a certain topic or tends to misinterpret the gist of the conversation."

This passage in an evaluation of my son, age 5, jumped off the page when I first read it two years ago. It was written by a local speech-language pathologist in private practice. And its detailed, nonjudgmental honesty is what finally put me on the path to accepting that Duncan has a disorder—and to getting him the services he needs.

Getting to that point had been torturous.

The first sign that something was wrong came the year before, when his preschool teacher expressed concerns about Duncan's lack of circle-time participation and habit of wandering the classroom. She also worried about his tendency to immerse himself in books, oblivious to his peers. I was puzzled. Is classroom wandering that unusual for a 4-year-old? And what's wrong with enjoying reading? I saw Duncan's love of books as nothing but positive for his language development.

Because I felt I ought to, I asked if the teacher suspected a disorder. She dismissed each one I named, except when I got to ASDs—autism. "I'm not a doctor, Ms. Law," she said. "But I'd suggest you take him see to somebody."

I stared at her in disbelief. There was no way this boy could have autism. I have a photo of him etched in my mind and displayed on my laptop (it still is). In it, he's plunging stomach-first onto a swing, eyes squeezed shut and a smile so wide you can't help but smile too. This is a boy who shouts your name and runs to greet you at day's end like something shot out of a cannon. You see that wild mop of honey blonde hair flying at you and then, whomp! He jumps into your arms so hard you almost fall over.

***

What his teacher suggested was so unsettling that I wanted a professional to debunk it, and soon. Unfortunately, we had to wait a year to see the fully booked developmental pediatrician—a year during which we moved from the city to the suburbs, and Duncan and his twin brother switched from a public preschool to a more rigorous private one.

It wasn't long before the principal of Duncan's new preschool started calling me on weekends with recitations of all his problems: his temper tantrums about food, his lack of class participation, his articulation problems, his strong aversion to liquid soap. On and on.

These calls were hard to take. It seemed to me she was picking on him for behaviors that are common among small boys, among little kids in general. Lots of kids lisp, find it hard to sit still and fuss about food. Here she was faulting him for being the 4-year-old little boy that he was. It also felt like she was impugning me for allowing or enabling him to act these ways—as in, if there's a problem with the kid, the parent must to blame. The parent must be lazy, lax and permissive.

Not that I wasn't struggling with Duncan myself. I had trouble directing him and noticed his brother was much quicker to comply. I saw that he was off in his own world and couldn't express his thoughts and feelings. When he cried, the tears falling from his tiny body were massive, the biggest I've ever seen. But he couldn't tell me what was wrong. And not being able to reach him left me feeling useless, depressed and desperate. Still, I figured he was just on his own developmental trajectory. So I moved both boys to a more child-centered preschool, which placed Duncan in a younger class that seemed to suit him. The phone calls stopped. But the comments about him still rankled, so I was eager to see the developmental pediatrician.

During Duncan's appointment with her, he put on the full Duncan show, first refusing to enter the office, then rebuffing her efforts to listen to his heart. Worse still, we didn't get any definitive answers, just an indication that there may be developmental delays and a stack of referrals. The doctor advised starting with a speech evaluation.

***

The private SLP evaluation opened my eyes to reality. She sat down with me to go over the diagnostic testing results, which pointed to a mixed receptive/expressive language disorder. She never once suggested that Duncan might be on the autism spectrum, but made it clear that Duncan had trouble focusing, so much so that it took two sessions to test him.

Talking with this SLP about Duncan made me fully grasp the need for immediate treatment. I worried that we'd lost precious treatment time and couldn't wait for him to start services. Right away, I arranged private speech-language services for him at his preschool twice a week. Soon after, when he entered public kindergarten, I alerted the guidance counselor that he would need a special education assessment, and likely an Individualized Education Program. The school initiated the assessment within weeks. And when the reports come in from the educators and experts, they were—like the initial SLP's—a shock.

Reading comments like these, I once again saw my son through others' eyes:

"In an eight-minute period, Duncan stood up and required direction five times ... While listening, he also failed to make eye contact, often sitting with his back to the teacher and instruction ... He began stating "me and the boys" out loud, four times ... Duncan was observed to be sitting under the coat rack ... He made a 'buzz' noise and tapped peers on the head."

***

The toughest part of Duncan's evaluation was filling out the Gilliam Autism Rating Scale. It felt like betrayal to report on his odd behaviors. Yet it also helped me see that life in the regular classroom must be a slog—obviously for his peers and teacher but also for him. I worried about his happiness, about how frustrating it must be to hear ceaselessly you're not acting right. I could see he was struggling to concentrate, that moving a pencil was difficult, and I fretted that he'd get down on himself and feel incapable.

So when the school psychologist revealed Duncan has a high probability of autism and symptoms consistent with Pervasive Developmental Disorder, Not Otherwise Specified, it was a relief. It was also reassuring that he scored high on intelligence testing. And it helped even more when his IEP team recommended that he enroll in an Asperger's program at a different school for first grade.

Flash forward a year: Duncan is 7 and has adjusted well to the Asperger's program. His handwriting is slowly improving and he appears more comfortable with school. Not surprisingly, his speech and concentration struggles continue. He randomly sheds his pants, and his eating is pickier than ever.

He and I continue seeing developmental experts for help.

But besides his difficulties, he has such areas of strength, including spatial abilities I can only dream of. Whereas I have no sense of direction, he sees maps in his head. When we're out driving, he tells me where to turn. He is also the kindest spirit I know. His Asperger's program awards prizes for good behavior, and he told me he's working to earn a kite for his brother.

Many of the professionals who work with him also notice this warmth: his enthusiastic greetings and hugs, his compliments and ready laugh. Back when I first met with the SLP who did the breakthrough evaluation, she commented on his particular sweetness. It was as if she understood that long, emotional inner road I'd already traveled, understood that every new parent she meets has traveled such a path. The thoroughness of her evaluation, and the sensitivity with which she shared it, helped move me from bewildered to mission-focused. We parents need that sort of empathic guidance to help our Duncans. They are counting on us. And they're going to keep counting on us long after they finish high school.

Bridget Murray Law is managing editor of The ASHA Leader.


  

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