Embracing Autism

Connecting and Communicating with Children in the Autism Spectrum

Robert Parish

• Publisher: Jossey-Bass
• Year: 2013
• Print ISBN: 9780787995867
• eBook ISBN: 9781118750056
• Edition: 1
• Topic: Education
• Subtopic: Inclusive Education

"The voices here confirm what I've always suspected: everyone is part of one large continuum, and the approaches and insights recounted here can help any parent, any educator, any person deal with any child—or, for that matter, any other person—more effectively and with more compassion. I only wish I'd encountered earlier this cadre of experienced and caring individuals whose humor and resourcefulness represent clearly how best to love and nurture a child." —Cynthia Nitz Ris, J.D., Ph.D., University of Cincinnati

Through sensitive, sometimes humorous, experienced-based writing from teachers, clinicians, and parent activists in the Autism Spectrum Disorder (ASD) community, this book will help educators and others to better understand the world inhabited by ASD children. The stories contained in the book will inspire and inform readers who are working day-to-day with children in the autism spectrum, providing valuable insights into what makes these kids tick and useful information on how they communicate, learn, and succeed.

Robert Parish (Cincinnati, OH) is an award-winning journalist with four nationally broadcast public TV documentaries about Autism Spectrum Disorders to his credit, as well as more than 100 digital video projects about ASD for the educational market.

Chapter 1

MY JOURNEY WITH JACOB

BY DIANE BAYER

(Diane Bayer, her husband, and two children live in North Carolina. A former teacher with a master’s degree in special education, she has written extensively about ASD since her son Jacob was diagnosed in 1999. —RP)

Minnie

The long wooden table divided us. Minnie and Frank sat on one side, and we professionals sat on the other. Our common bond was the education of their only son, Sam.

Sam, thirty-five and having profound mental retardation and autism, was nearly blind and partially deaf. He was completely nonverbal and had a penchant for placing his hand up to his throat and making a honking sound. Because he could not communicate his basic needs, Sam was quite a challenge to those of us who worked at the therapeutic day program.

Making matters more interesting, Sam was only partially toilet trained and also possessed a stubborn strength of hunkering down to the floor, “Gumby style,” when he didn’t feel like moving.

Minnie and Frank, then in their seventies, had been caring for their son with very little help for decades. The family lived together in a small one-bedroom apartment within the city. Pen poised, I began the meeting by discussing possible therapeutic goals for Sam.

My proposed goals were concrete and directly functional, such as teaching Sam how to use sign language to indicate he needed to use the bathroom. I was in midsentence when Minnie interrupted me with her soft southern drawl: “May I say something please?”

Pausing, I put my pen down, and said, “Yes of course. What would you like to tell us?” Frank sat quietly beside his wife, looking down at his hands. Minnie let out a little sigh and began to tell the story that we therapists could not glean from any of our ancient files on Sam’s developmental history. It was a story of a mother and father’s profound love for their only child. I leaned back in my chair to listen.

Minnie, who was just beginning to experience midlife, and her husband were visiting Germany when she went into labor prematurely. Sam was born with a host of problems, which seemed insurmountable to the attending German medical staff. They predicted that Sam’s quality of life would be so negligible that they posted a sign above his crib: “Do Not Feed.”

The staff was unaware that Minnie and Frank could read German. Minnie saw the sign and demanded it be taken down at once. She was heartbroken that their son was deemed utterly unworthy of care. But Minnie and Frank did care and did choose to love this child when most everyone else wanted to give up on him.

So Minnie told us that she would never give up hope for the boy who was now a grown man. There was a communal silence on the professional side of the table. Minnie was not quite finished and paused only slightly before asking the question that would tear me up inside. Looking directly at me, she asked, “Could you do one thing for me? Could you please teach him to say ‘Mama’ ?”

I met her eyes and was about to say the truth. The truth was that her Sam would most likely never be able to say a single word, even Mama. Yet there was something pure about her request. It spoke to the inseparable bond between mother and child. All these years had passed and she was still waiting, still hoping beyond hope.

Who was I to dash her dreams? I replied, “I’ll try.”

I can tell you honestly that I never did achieve that goal. Minnie and Frank have long since passed away. She died never having heard her son say “Mama.” I still think about that family. After my son Jacob was born, I found myself thinking about them a lot as, almost a decade later, the tables were turned.

On one side sits a diagnostician, an occupational therapist, a speech therapist, a psychologist, and a case manager. My husband and I sit on the other side. We wait for the necessary papers to be shuffled and the meeting to begin. Everything seems so normal, so ordinary, but we know after this meeting our lives will never be ordinary or normal again.

When the professionals deliver the news that our son has autism, it validates everything I have been seeing but refused to believe. Jacob had some of the classic early signs. He used only a few words, he didn’t point to things, he refused to engage in direct eye contact, and he didn’t come when we called his name.

As much as I already knew about autism, as much as I was educated and trained and had years of clinical experience behind me, I could not process that my son could have autism. I could not emotionally accept the obvious.

After hearing the A word announced, I sit stoically at first. But then the questions begin welling up inside of me, all those questions without answers. I ask some of the very same questions posed to me from parents who once sat on the opposite side of the table.

“Will he get better?”

“What will life be like for him? for us?”

“Will he be able to talk?”

I then ask the question that brought me full circle back to Minnie so many years ago.

“Will he ever call me Mommy?”

As the professionals begin to respond, it is as though I’m caught by a wave and forced under water. The rushing in my ears drowns out all sound. I’m unable to hear their muted replies. I know instinctively that they can’t see the future. Nobody can.

My only hope is that I find some way to connect with Jacob. Like Minnie, I will love my son even if he never speaks a single word. As a parent, I am humbled by the human need to love and be loved by my child.

Speaking the Language of the Natives

There was a day shortly after my son’s diagnosis when I saw a large fountain, the kind where you toss in a coin and make a wish. I looked at Jacob sitting silently in his stroller, entranced by the movement of the water.

With a flick of my wrist, I released both the coin and my wish into the spray. I wished someday to have a conversation with my son. At that time, such a wish seemed a remote possibility.

To have a conversation, the ability to employ words is very useful. Yet when Jacob was diagnosed with autism at the age of three, he had no words at all. In fact, he didn’t point, make eye contact, or respond to his name. He didn’t seem to possess even the basic preverbal skills necessary to learn language. He babbled incessantly to himself, but it didn’t appear that he wanted to or understood how to connect sounds to meaning and intention.

I remember taking him to a toy store, his small frame slumped in the stroller. I would see other children excitedly pointing out toys they wanted to buy. Not Jacob. He didn’t seem to want anything. If he had shown any sign of desire, I would have been prepared to buy any toy in that store. He just needed to give me a sign. The sign did not come. More often than not on such visits, we would go home empty-handed.

We had several sad Christmas mornings where I would place a present before him and Jacob would either look blindly at the package or walk away. I felt as though he were a tourist in our world.

How could I share my world with him if we didn’t have any way to communicate with each other?

Early on, I understood that if I were to have any hope of connecting with my son I would need to stop assuming that he would have all the same wants and needs of a typical child. I would begin to play detective, observing when he did show desire. I observed that Jacob played with traditional toys, but quite often other objects would hold more of his fascination—as with our broom. It was through Jacob’s attachment to this broom that we were able to experience one of our very first connections.

Jacob would reach for the broom, not for the purpose of sweeping but to get lost in the pattern of its strands. He was enraptured by how each yellow strand fell into place as he flicked his fingers repetitively though them. He was so spellbound by his broom play that he would choose it over anything, including toys or even food. Now that I had found the object of his desire, I would use this attachment as a basis for connection. I placed his beloved broom up on a high shelf, one that he could not possibly reach. Jacob pushed my hands up toward the broom to get it. When that did not work, he tried to climb up my body to reach it. I told him that if he really wanted the broom he would have to make some sort of sound for it.

I had him watch my mouth as I repeated the word broom. I had no idea whether this strategy would work or not, but I kept trying. Jacob was rapidly becoming frustrated, not seeming to understand what I was wanting from him. Growing weary myself, I almost abandoned my efforts.

And then I heard it. It was like a ghost word, so delicate and airy it had almost gone through my consciousness unnoticed. He made the best approximation of the word he was able to do: “booohm.” I swooped up his body and scared him with my joy. I gave him the broom and he began to caress the golden strands like hair.

This was the just the beginning of Jacob’s language development. Along with booohm, he would add the word go to his verbal repertoire. This erupted in the middle of the night. Jacob stood up in his crib and was attempting to climb over the rails when he wailed, “Go!” It was loud, it was clear, and there was no misunderstanding of what he meant. Other words followed: more, milk, up. Each time he would say a particular word, I wrote it down, hoping for the day when my list exceeded fifty words.

Part of this initial list were number words and the alphabet. Jacob learned to recite the alphabet and count far sooner than he learned names for people. I waited patiently a couple more years before I heard him call for me by name.

My wish seemed to be coming true as Jacob’s list of words grew to several pages. I stopped counting after a couple hundred words. Early on, I had wondered if Jacob would ever be able to talk at all. Then I wondered what he might say to me once he did learn language. I found he would use language in highly unusual ways. As much as he was learning my language, I was also learning his.

Here are some examples of Jacobspeak, followed by translation:

• “Elephant!” means “I’m extremely angry right now!”
• “Circus Clown,” often spoken in a sneering tone. Jacob is telling someone that she’s an idiot.
• “Holiday!” Jacob’s way of granting himself immunity from doing something he doesn’t wish to do: “Don’t bother me with your silly requests; I’m declaring a holiday.”
• “Frog, frog, frog” is a chant he developed to calm himself down when upset. Quite often, he jumps to the words.
• “Birthday party! Toot! Toot!” is his way of telling us whatever is going on is not making him happy as a birthday party would.
• “Little Blue Engine please help us,” is cried out when he’s frustrated and in need of help.

I find that I must assume the role of interpreter as he makes those forays into reaching out through words. Connection does not come easily for Jacob; he doesn’t fully speak the language of the natives.

True connection is a reciprocal process. We can never assume our world is the only world. I had to put one foot into Jacob’s world as much as he must step forth into mine. He learned but one way to merge both worlds through spoken language. Could we discover other ways to connect as mother and son?

All in a Song

There is one phrase every mother wants to hear from her child. It’s the fundamental message from which primary bonds are formed: “I love you.”

I had spoken these words out loud and in soft whispers to Jacob from the first moments I could hold him. After he was diagnosed, I anticipated that I might never hear those words said back to me—a logical assumption to make for a child who had so little use for words.

When I finally did hear my son say “I love you,” the words were sung and not spoken.

When we first began making forays to connect with Jacob, it was suggested that we try music as a means to connect. It seemed an obvious choice. He had always shown a passion for music. Even as an infant, we would catch him holding onto the sides of his crib, wriggling to the rhythms of a song played on the radio. Later, he would demand certain songs be played over and over from videos or tapes. He would try to sing his favorite songs, only to have them come out garbled from running all the sounds together in a never-ending cacophonous stream.

We helped Jacob comprehend the lyrics he heard by purposefully slowing down the songs we sang to him, carefully pausing between words. We also paired written song lyrics with visual icons, creating a rebus of sorts. We enjoyed success when we heard him sing songs with more precision and clarity than he could muster using spoken language alone. Music was quickly becoming a marvelous conduit for communication and connection.

There was another strategy we employed to get him to participate in a musical reciprocity of give-and-take. We would sing a verse and pause, waiting for him to finish singing the rest of the words. This was the very stra...

Table of contents

• Cover
• Contents
• Title
• Copyright
• Dedication
• Acknowledgments
• About the Editor
• About the Contributors
• Foreword: The “Secret” Key to Connection, by Susan Senator
• Introduction
• Chapter 1: My Journey with Jacob, by Diane Bayer
• Chapter 2: Relating to ASD Children, by Arnold Miller
• Chapter 3: Three Special Kids—No Apologies Necessary, by Kim Stagliano
• Chapter 4: Patience—The Least Important “Super Power,” by Kristin Kaifas-Tennyson
• Chapter 5: North of the Border, by Gay and Dennis Debbaudt
• Chapter 6: Getting to Know You, by Stephen Shore
• Chapter 7: Life with Shawn, by Jeanne Lyons
• Chapter 8: The Freedom to Be Odd, by Cammie McGovern
• Chapter 9: Just a Little Autism, by Teresa Becerra
• Chapter 10: Acceptance in Waves, by Robert Becerra
• Chapter 11: Everyone Has a Chance to Grow, by Jackie Marquette
• Chapter 12: Grass in the Wind, by Kristina Chew
• Chapter 13: Now for Our Feature Presentation, by Robert Parish
• Chapter 14: The Big Question
• Resources
• Index