Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recoveryby Karyn Seroussi
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/i>
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Unraveling the Mystery of Autism and Pervasive Development Disorder is an essential guide for parents with autistic children who hope to better understand and intervene with the disorder.
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.
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Special Diets for Special Kids, by Lisa S. Lewis
This book is my favorite, and not just because Lisa gave me an acknowledgment in it! My dog-eared copy lives in my kitchen, where it has been spattered with oil, crumbs, honey, and cocoa powder as a testimony to its usefulness. It has the largest compilation of gluten-free, dairy-free recipes ever put together specifically for people on this diet.
The Gluten-Free Gourmet series, by Bette Hagman
The Complete Food Allergy Cookbook, by Marilyn Gioannini
Raising Your Child Without Milk, by Jane Zukin
The Yeast Connection Cookbook, by William Crook
Autism Treatment Guide, by Elizabeth K. Gerlach (see page 220)
Detecting Your Hidden Allergies, by William Crook
Is This Your Child? by Doris Rapp
The Four Pillars of Healing, by Leo Galland
Let Me Hear Your Voice, by Catherine Maurice
Digestive Wellness, by Elizabeth Lipski
Autism Network for Dietary Intervention
P.O. Box 17711
Rochester, NY 14617-0711
Web site: www.AutismNDI.com
Founded by Lisa S. Lewis and Karyn Seroussi to provide support for families using dietary intervention in the treatment of autism and related disorders. The ANDI News is a quarterly newsletter containing recipes, research updates, and articles by parents and physicians. Cost of a calendar-year subscription is $20U.S., $26 International.
Celiac Sprue Association (CSA/USA)
P.O. Box 31700
Omaha, NE 68131-0700
CSA provides information and referral services for persons with celiac disease and dermatitis herpetiformis (a skin condition caused by gluten intolerance) and has published a series of low-cost brochures on gluten-free commercial foods and related topics. Their annual fall conference provides opportunities to present current information and research of celiac sprue and an exchange of approaches to coping with the gluten-free diet. CSA has an annual promotion during October, which is Celiac Sprue month, and one-day regional conferences during March.
CSA publishes a quarterly newsletter, Lifeline, at a subscription cost of $20 a year, that has many recipes for gluten-free foods, order forms for special products, and chapter and resource unit contacts. Send $8 for their comprehensive shopping guide of gluten-free foods.
Celiac Disease Foundation (CDF)
13251 Ventura Boulevard, Suite 3
Studio City, CA 91604-1838
The mission of the Celiac Disease Foundation is to provide services and support to persons with celiac disease and dermatitis herpetiformis, through programs of awareness, education, advocacy, and research. They distribute reliable up-to-date information about CD/DH and the gluten-free diet, seek to increase awareness of the condition among all health-care professionals, food and drug manufacturers, the food service industry, the media, and the public.
The Celiac Disease Foundation has local chapters and will assist persons who wish to start a support group in their area. They provide parent-to-parent matching through a group called Raising Our Celiac Kids (ROCK). They publish a quarterly newsletter, CDF Newsletter, that is included in membership fees, along with a brochure, Celiac Disease. They also have a bibliography of books and articles that are available to members including Guidelines for a Gluten-Free Lifestyle, Against the Grain: The Slightly Eccentric Guide to Living Well Without Gluten or Wheat, and The Gluten-Free Gourmet. They also have videotapes. Call or write for order forms and further information.
The foundation collects information on physicians and researchers who treat or study the condition and provide this information to their membership. They will provide information and referrals to other resources.
Celiac/Coeliac Wheat- and Gluten-Free Internet List
A listserv is simply a large e-mail discussion group, with all outgoing e-mail being sent to all members at once. It is a free service for Internet users. This is how I first got started as a gluten-free cook. The celiac list is a wonderful resource and the best way to get answers and opinions fast. If you find that corresponding on the list is taking up too much of your time, you can unsubscribe, or set your subscription to no mail until you are able to return. Although it is really a list for people with celiac disease, many parents of autistic children can be found there.
To subscribe, send a message to: firstname.lastname@example.org
In the body of the message type: Subscribe CELIAC Your Name
You will receive a letter explaining how to use the list.
St. John's also hosts a very large autism list, which includes several parents using diet and biological intervention.
To subscribe, send a message to: email@example.com
In the body of the message type: Subscribe AUTISM Your Name
You will receive a letter explaining how to use the list.
ARI (Autism Research Institute)
4182 Adams Avenue
San Diego, CA 92116
The ARI, founded and directed by Bernard Rimland, Ph.D., functions primarily to educate and support families of children with autism about current research, and about the various therapies available, including "alternative" therapies. For a small copying fee, they will send you packets of information on a variety of interventions. I highly recommend their quarterly newsletter, The Autism Research Review International, which reviews biomedical and educational research in the field of autism and related disorders. To subscribe in the United States, send $18; international subscriptions are $20 in U.S. funds.
You can write to the ARI for information on registration for the annual DAN! Conference. To order the DAN! Protocol, a physicians' biomedical diagnostics manual, send $25.
CAN (Cure Autism Now)
5225 Wilshire Boulevard, Suite 226
Los Angeles, CA 90036
Web site: www.canfoundation.org
You may request a "parent pack," which includes the CAN Consensus Statement.
Marianne Toedtman, AGRE Family Recruiter
The Feingold Association of the United States
127 East Main Street, Suite 106
Riverhead, NY 11901
The Feingold Association of the United States is a nonprofit organization whose purposes are to support members in the implementation of the Feingold Program and to generate public awareness of the potential role of food and synthetic additives in the treatment of learning, behavior, and health problems. The program is based on a diet eliminating synthetic colors, synthetic flavors, and the preservatives BHA, BHT, and TBHQ. They have recently added a special section to their program introducing members to the gluten- and casein-free diet.
Developmental Delay Resources
4401 East West Highway
Bethesda, MD 20814
Web site: www.devdelay.org
The DDR is a not-for-profit organization whose mission is to educate parents and professionals supporting children with developmental delays about healthy options for treating the whole child. They publish a quarterly newsletter called New Developments, which includes articles about therapies, conferences, and nutrition, with lists of helpful organizations and mail-order for books.
The Great Plains Laboratory
9335 West 75th Street
Overland Park, KS 66204
Call for a urine collection kit if you are interested in testing for fungal metabolites the waste products of gastrointestinal yeast or to order a copy of Biological Treatments for Autism & PDD.
The National Vaccine Information Center (NVIC)
512 West Maple Avenue, Suite 206
Vienna, VA 22180
Web site: www.909shot.com
The National Vaccine Information Center is a national, nonprofit educational organization founded in 1982. It is the oldest and largest national organization advocating reformation of the mass vaccination system and is responsible for launching the vaccine safety movement in America in the early 1980s. Located in Vienna, Virginia, NVIC is dedicated to the prevention of vaccine injuries and deaths through public education. NVIC provides assistance to parents whose children have suffered vaccine reactions; promotes research to evaluate vaccine safety and effectiveness as well as to identify factors which place individuals at high risk for suffering vaccine reactions; and monitors vaccine research, development, policymaking and legislation. NVIC supports the right of citizens to exercise informed consent and make educated, independent vaccination decisions for themselves and their children.
- GF/CF Kids (Includes new listserv for parents using the diet for the treatment of autism): www.gfcfdiet.com
- Dr. Sidney Baker's new web site: www.sbakermd.com
- William G. Crook, M.D.: www.yeastconnection.com
- University of Pittsburgh Medical Center's Center for Complementary Medicine Forum on Alternative and Innovative Therapies for Children with Developmental Disorders and Brain Injury: www.healing-arts.org/children
- Dr. Jeff Bradstreet ("the Good News Doctor"): www.gnd.org
- Paul Shattock at the University of Sunderland: osiris.
- Grain-free, dairy-free recipes: www.PaleoFood.com
- Autism-FBI (Fighting Back with Dietary Intervention Listserver) This list is for intermediate and advanced GF, CF, yeast-free dieters: www.onelist.com/subscribe.cgi/Autism-FBI
- Net articles of Dr. Kalle Reichelt, Pediatric Research Institute, Oslo, Norway: www.panix.com/~donwiss/reichelt.html
- Tampere University in Finland's abnormal findings of peptides in urine samples: www.sci.fi/~biopteri/e-index.html
- Interview with Donna Williams Did the Wrong Diet Make This Woman Autistic?: www.jaymuggs.demon.co.uk/donna. htm
- Travel Tips helpful in locating gluten-free food while traveling: www.idsl.net/celiac/travel/index.htm
- Articles and other links to gluten-free diet information: www.GFlinks.com
- ADHD and milk (lots of links): www.nowheat.com/grfx/nomilk/index.htm
- Future Horizons Books about autism: www.futurehorizons-autism.com
- Stephen M. Edelson Center for the Study of Autism (Oregon): www.autism.com
- Can autism be detected at 18 months? The needle, the haystack, and the CHAT: php.iupui.edu/~rallen/chat.html
- The CHAT test: php.iupui.edu/~rallen/thechat.html
- The Autism Autoimmunity Project: www.gti.net/truegrit
- The Progress in Medicine Foundation is a nonprofit organization supporting medical research and physicians using nonmainstream research-based medicine. You can get updates on Dr. Sinaiko's appeal at their web site: www.treatmentchoice.com
Copyright © 2000 by Karyn Seroussi
What People are Saying About This
(Bernard Rimland, Ph.D., Director, Autism Research Institute)
Lisa S. Lewis, Ph.D., author of Special Diets for Special Kids)
(Jane M. El-Dahr, M.D., Head of Pediatric Allergy, Immunology & Rheumatology, Tulane Medical Center/Tulane Hospital for Children)
Meet the Author
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.
Karyn Seroussi, a freelance writer, has spoken at conferences around the world, helping other parents understand what is beginning to be known about the nature of, and the treatments for, autism. Her goal is to see parents and professionals working together; to have autism diagnosed early and treated appropriately. You can visit her website at KarynSeroussi.com.
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This book was excellent. I couldn't put it down until I read the entire story. As an occupational therapist, it is interesting to see how the diet is so important in managing and curing?? autism. What an amazing journey this family made towards getting their son out of the cloud of autism.
This book I give credit to significantly improving the life of your autistic child and your entire family. The information in the book wasnt 100% for me, but I would recommend this book to 100% people who are looking to take their first step into treatment of their child.
This book is a great source for all kinds on information on autism. It provides hope for parents that get an early diagnosis and are willing to work hard.
I was given this book by a friend that has an autistic child and when I suspected my children having the condition. I found this book to be like a mothers diary. I also found it to have a liberal approach. Talks alot about how diet and vaccines contribute to her sons autism which is under speculation. I have read better books that are more helpful.
i found this to be more like a mothers diary and not very helpfull. my son is add/pdd with transitional ticks. i did however like the diet info and found it encourging to cry with her knowledge we are not alone and can with early intervention help our children make autism direct them in a field of work and success.
I frantically rushed to the library the day after hearing that my son was diagnosed with Autism and was frustrated that this was the only book on the subject. I read the entire book that night after putting my son to bed. I now thank God for insisting that I read this book by default and I thank Karen for giving me something difficult to muster...HOPE! I'm in my 3rd day of finding out about my son's disorder and since the IFEP is not yet written, this book gave me an opportunity to actually do something...the diet. I hope and pray that it works. Parents with Autistic children or other PDD's MUST read this book as soon as possible!
This is the best book I have read on the subject of autism treatments. I couldn't put it down.
I am the father of a six year old with autism. Karyn Seroussi has done my daughter a great service by telling the story of her son's struggle with this disorder. I stayed up late many nights reading this book, and can only say it was well worth the effort. My daughter improved in unmistakable ways after we removed casein and gluten from her diet. Karyn gives names, addresses, phone numbers, and urls, as well as a very helpful FAQ section. Anyone who is trying to come to grips with autism simply must read this book. It could change their life for the better. Thank you, Karyn, for helping our daughter. We owe you more than we could ever repay.
Karyn Seroussi's book brings a powerful message to parents of children with autism: you can take control of your child's health through dietary intervention. When our son was diagnosed with autism we were told, 'don't be too optimistic.' Like Karyn, we searched for answers-- and diet has been one of the keys to our son's success.I am thrilled to recommend this book to other parents searching for ways to tame this mysterious illness. Karyn's straightforward approach makes difficult concepts easy to understand. Books like Karyn's will empower parents to not only ask new questions about autism, but to demand better answers.
Karyn has indeed felt the pain, and unlike somepeople who lay down fought against the mainstream medical community to cleanse the fog separating her son from her. Before reading her book I had been following Dr. Rimland's great research(THANKS DR. RIMLAND and to DR. TAYLOR for helping implement DR. Rimland's procedure) but Kayrn and her husband Alan attended to her son with ferocity that only a parent can give an account of. Again great book Ms. Seroussi and give Miles a hug for all of us.
Professionals and parents should put aside whatever they are currently reading and devote a couple of nights to reading this compelling, page-turner of a book. As the mother of a 5 y.o recovering from autism, I have read over 20 books with 'autism' in the title or the description, in addition to many books on health and healing. Though several have been valuable, none compare to Seroussi's vitally important book. It is the first book I've encountered that gets to the heart of autism's etiology and its most crucial treatment--dietary intervention. Without question, I believe this book will one day be cited for single-handedly changing the course of autism.