Unraveling the Mystery of Autism and Pervasive Developmental Disorder : A Mother's Story of Research and Recovery

by Karyn Seroussi

• ISBN13: 9780684831640
• ISBN10: 0684831643
• Edition: 1st
• Format: Hardcover
• Copyright: 2000-02-17
• Publisher: SIMON & SCHUSTER INC

Summary

When their nineteen-month-old son, Miles, was diagnosed with autism, Karyn Seroussi, a writer, and her husband, a scientist, fought back with the only weapons at their disposal: love and research. Consulting medical papers, surfing the Web, and networking with other parents, they traced the onset of their child's problems to an immune system breakdown that coincided with his vaccinations. As a result, his digestive system was unable to break down certain proteins, which in turn led to abnormal brain development. So Karyn and her husband got to work -- Karyn implementing their program at home while her husband tested his theories at the scientific lab where he worked. Unraveling the Mystery of Autism and Pervasive Developmental Disorder is an inspiring and suspenseful chronicle of how one couple empowered themselves to challenge the medical establishment that promised no hope -- and found a cure for their child. Here are the explanations and treatments they so carefully researched and discovered, a wealth of crucial tools and hands-on information that can help other parents reverse the effects of autism and PDD, including step-by-step instructions for the removal of dairy and gluten from the diet, special recipes, and an explanation of the roles of the key players in autism research.

Author Biography

Karyn Seroussi, a freelance writer, is the cofounder of the Autism Network for Dietary Intervention (ANDI) and coeditor of ANDI News, a quarterly publication for parents of children with autism using biological intervention.

Table of Contents

Foreword	11	(8)
Bernard Rimland
PART ONE: MILES'S STORY: Hunting the Jabberwock
Prologue	19	(4)
The Diagnosis	23	(19)
A Plan of Action	42	(16)
The Importance of the Diet	58	(28)
Science's Questions, My Answers	86	(20)
Red Flags	106	(16)
``Trials''	122	(25)
Breakthroughs	147	(28)
Moving Forward	175	(30)
Epilogue	195	(10)
PART TWO: THE DIET
Questions and Answers	205	(13)
First Steps: How to Get Started	218	(11)
Going Gluten-Free	229	(8)
So, What Can I Feed My Child?	237	(16)
Basic Recipes	253	(8)
Appendix A Recommended Reading, Resources, and Organizations	261	(7)
Appendix B Mail Order for Gluten-Free Foods	268	(3)
Index	271

Excerpts

Prologue

We're in the Emergency Room. It's three o'clock in the morning and Miles has been screaming for two hours. His limbs are tremoring. Are these seizures? They started before his fever went up. His temperature is 106 degrees. Could this be related to his eighteen-month DPT (diphtheria, pertussis, tetanus) vaccination the previous morning? The doctor doesn't know. The same thing happened three months ago, a few days after his MMR (measles, mumps, rubella) vaccination. Now his fever is breaking and he is lying limply in my arms. He is staring into my eyes with a surprised look. He smiles slightly. I have a sudden feeling of elation. "It's me, it's Mommy," I whisper. He stares for several minutes, as if memorizing my face. I relish his gaze. I'll never forget this moment. It is the first time in three months he has let me look into those beautiful eyes. It will not happen again for a long, long time.

Miles resisted my efforts to hold him and climbed off my lap. He toddled over to the microphone and tried to pull it off of its Formica table. It was screwed down, so he contented himself with swiveling it from side to side. I looked up at the one-way glass. Were we being observed? I really didn't think so. Perhaps the evaluation was being videotaped. I decided that I should be interacting with Miles, just in case.

"Milo, come here, sweetie." He ignored me, so I went over to him and pulled him away from the microphone. I sat him on my lap, facing me, and tried to charm him into a game of patty-cake. He whined and bent over sideways, straining to get away. I put his hands in front of his face, then took them away.

"Where's Milo? Peekaboo!" His whining grew louder and more high-pitched. "Where's Milo?"

That question stayed in my head as I let him go. He went back to the microphone as I bit my lip. I realized, for the first time, how Miles's behavior must appear to others. Didn't all nineteen-month-olds love to play peekaboo? Didn't he once love games like that? What was wrong with him?

I had been warned not to compare my children, but my daughter Laura had adored the times we set aside to sing songs, tumble on the floor, and play lap games. At nineteen months she would climb into my bed each morning for at least half an hour, smiling into my eyes and making me teach her words.

"What dat?"

"That's a pillow."

"Piw-low. What dat?"

"That's a ceiling fan."

"Seewing fan."

Miles wanted little to do with us, and showed no interest in our language. Sometimes he ran to me when he was injured, his face contorted with misery, running almost into my arms and then turning, suddenly, so that I had to pick him up from behind.

He had said a few words as early as eleven months old: "cat," "Mama-ma-ma," "dance," and "yay!" But that was months ago. There was "ish," his word for "fish," which had also disappeared.

The door opened. Beth and Bonnie sat down at the little table with the colored cubes still stacked into tiny towers. The room was very warm, and I looked out the window into the parking lot. A breeze blew the trees outside. Did these windows open? Probably not. Rooms with one-way glass are not likely to have windows that open.

Beth was speaking. The room, the table, and the whole scene had become slightly unreal, as if I were watching myself act in a play.

"We've analyzed Miles's test scores. He does have some irregularities in his development. Motor skills are a relative strength, but his language is severely delayed."

On the back of a large white envelope, Beth began writing numbers for me to look at. Numbers that meant that Miles was developmentally delayed. My skin began to crawl.

"Miles's language development is at less than a six-month level, and his social skills are at about ten months."

But Miles was nineteen months old. How could something be so seriously amiss without anyone having noticed? He had passed his twelve-month and fifteen-month checkups with flying colors.

"We think that Miles has a disorder somewhere along the autistic spectrum."

"Autistic?" I whispered. "Do you mean autism?"

"We now refer to it as the 'autistic spectrum.' He could be on the very mild end, and he's so young, it's hard to know for sure. It's a developmental disorder, accounting for a range of delays including language and social development."

What did that mean? She didn't make it sound too bad. I stared at Miles, a tall, handsome little boy with a sturdy body, fair curls, and rosy cheeks. He looked normal. Strangely enough, I was reassured. In a way, it was good to know that what was wrong had a name. I felt a glimmer of relief that someone had finally acknowledged my concerns. But autism? The word conjured up a vague image of a profoundly disturbed child rocking in a corner. Suddenly, I felt a surge of adrenaline and my heart began to pound.

Miles finally left the swiveling microphone, crossed the room, and began to open and close the door of a toy barn on the table. First he opened it, took the cow out, and closed it, then opened it, put the cow back, and closed it again.

"Does he do a lot of repetitive things like that at home?" asked Bonnie Kramer, a psychologist.

"Well, he has a scientific mind, like his father. Alan is a research chemist. Miles likes to systematically experiment with a toy like that. I don't think of it as repetitive, really. I mean, since he varies it. See? This time he took out the farmer and the cow." I paused. "It's very hot in here, isn't it?"

They were silent.

"What does this mean?"

"Well, we're going to refer you to a developmental pediatrician for a formal diagnosis," Beth said. "But right now we're going to have you speak with our social worker. I'll play with Miles for a while until you're done."

"I don't think he'll let me leave him with strangers," I said.

I was wrong.

Copyright © 2000 Karyn Seroussi. All rights reserved.