Cover image for Unraveling the mystery of autism and pervasive developmental disorder : a mother's story of research and recovery
Title:
Unraveling the mystery of autism and pervasive developmental disorder : a mother's story of research and recovery
Author:
Seroussi, Karyn, 1965-
Personal Author:
Publication Information:
New York : Simon & Schuster, [2000]

©2000
Physical Description:
288 pages ; 23 cm
Language:
English
ISBN:
9780684831640
Format :
Book

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Summary

Summary

Explores the role of nutrition plays in dealing with autism and pervasive developmental disorder and chronicles the struggle and triumph of a man and a woman who challenged the status quo to help their young son.


Author Notes

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.


Reviews 2

Booklist Review

Miles Seroussi began life like any other baby, but as the months passed, his mother, Karyn, increasingly noticed his differences from other children his age. Her book details her search for interested doctors and for approaches that could improve her son's condition. Her continual exhaustion (she was diagnosed with chronic fatigue syndrome at 23) undoubtedly hampered her efforts, but her biochemist husband supported her and acted as a stabilizer for her as she labored with the offbeat elements of some of the programs she discovered. She found other mothers involved in much the same quest as hers at face-to-face meetings and over the Internet, and one of them played a most helpful role in her efforts. Seroussi looked into the possible relationship between vaccinations and autism but concentrated on nutrition and diet while avoiding gluten and lactose, which ultimately brought Miles a much improved life. As she tells her story, Seroussi gives practical advice to others facing similar child-development problems and points them to helping organizations. --William Beatty


Publisher's Weekly Review

What can be more devastating for parents than to learn that their child is autistic? The severely debilitating neurological disorder, which affects social and language development, can be difficult to treat. When her son was diagnosed with autism at 19 months, Seroussi, a small-business owner and wife of a research chemist, determined to do everything in her power to help her child achieve normal functioning. In addition to pursuing recommended speech and behavior modification therapies for her son, Seroussi devoted her considerable energies--often against medical advice--to researching alternative approaches. Her own experience and a growing body of scientific evidence pointed to connections between autism and diet. And though the theory has not yet been proven, Seroussi says, research now suggests that autism may be an autoimmune disorder triggered in rare cases by an infant's measles-mumps-rubella immunizations. Convinced that the inability to digest certain proteins was contributing to her son's condition and that his autism was related to his reaction to MMR vaccines, Seroussi eliminated suspect foods from his diet; he made such dramatic improvement that, by age four, he was functioning normally. Now a crusader for dietary intervention, Seroussi has written a book that will give hope to many families--though she cautions that not every autistic child responds to such treatment. She includes a FAQ section, gluten- and casein-free recipes and resources, and a list of organizations and readings. Agent, Kathi Paton. (Feb.) FYI: Seroussi is co-founder of ANDI (the Autism Network for Dietary Intervention) and co-editor of the ANDI News. (c) Copyright PWxyz, LLC. All rights reserved


Excerpts

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.

Table of Contents

Bernard Rimland, Ph.D.
Forewordp. 11
Part 1 Miles's Story: Hunting the Jabberwock
Prologuep. 19
1 The Diagnosisp. 23
2 A Plan of Actionp. 42
3 The Importance of the Dietp. 58
4 Science's Questions, My Answersp. 86
5 Red Flagsp. 106
6 "Trials"p. 122
7 Breakthroughsp. 147
8 Moving Forwardp. 175
Epiloguep. 195
Part 2 The Diet
9 Questions and Answersp. 205
10 First Steps: How to Get Startedp. 218
11 Going Gluten-Freep. 229
12 So, What Can I Feed My Child?p. 237
13 Basic Recipesp. 253
Appendix A Recommended Reading, Resources, and Organizationsp. 261
Appendix B Mail Order for Gluten-Free Foodsp. 268
Indexp. 271