I Know You're in There: Winning Our War Against Autism

by Marcia Hinds, James B. Adams PhD (Foreword by)

Overview

This isn’t just another one of those autism books for parents. Rather, this book is a groundbreaking guide that will give both parents and doctors treating autism tools and a pathway to help your child.

There was something wrong with Ryan. His parents knew it before the psychiatrist predicted he would end up in an institution. Ryan was diagnosed as autistic at age four. He wouldn’t look people in the eye, had troubles with socialization, difficulties with language and more like most kids that range from mild, to severe autism, or even asperbergers. Like all parents who receive this diagnosis, that day changed everything as your ticket is punched to autism island, population one or two. There was no understanding your child with autism . . . no manual for parenting autism . . . recovery from autism . . . there was no cure . . . there was no hope. Or was there?

I Know You’re in There tells the true story of how, through diet, applied behavior analysis (ABA), consistent and rigorous medical treatment, and more, Ryan’s family took the jump and was able work on healing the symptoms known as autism and ultimately to overcome autism. It took a lot of trial and error, but today Ryan isn’t just high functioning on the autism spectrum disorder, but rather uniquely human and is an aerospace engineer, has friends, relationships, and lives a happy “typical” life. His recovery wasn’t miraculous, but instead the result of getting proper medical care, and his parents never taking “no” for an answer.

This book provides an early start for your child with autism. Marcia sincerely provides real world examples and actionable steps to take to get your child the treatment and care that could help them beat autism. If your child has been diagnosed with autism, or the warning signs are there, which are also covered here, I Know You’re in There is an indispensable resource in your fight against autism spectrum disorder.

Product Details

ISBN-13:	9781510771062
Publisher:	Skyhorse
Publication date:	01/04/2022
Pages:	408
Product dimensions:	6.00(w) x 9.00(h) x 1.00(d)

About the Author

Marcia Hinds has more than fifteen years’ experience as a an educational and behavorial consultant. She works with children on the autism spectrum and advocates for their families. Marcia holds a bachelor's in Psychology and Sociology from the University of California at Los Angeles (UCLA). She is a credentialed K-12 teacher. Ironically, Marcia, along with her husband Frank, worked in the UCLA Young Autism Project under Dr. Ivar Lovass as undergraduates at UCLA. As therapists they used Applied Behavior Analysis (ABA) before all the research was in about the effectiveness of ABA. Thirteen years later, that training came in handy when Ryan came along and their lives changed forever.

Marcia’s most impressive credential for writing this book is that she is Ryan’s and Megan’s mother and her family survived their war against autism. As a result of combining medical, behavioral, and educational interventions, Ryan recovered. Ryan now works as an aerospace systems engineer for a major Fortune 500 company. But more important than that . . . Ryan has friends, a social life, and is happy. In short, he is living the life all parents want for their children. He does everything the “experts” said would never happen. Ryan’s inspirational story brings hope to families in the trenches still struggling to help their children.

Dr. James B. Adams is an autism researcher with over forty publications focused on biomedical causes of autism and treatments for it, the president of the Autism Society of Greater Phoenix for nineteen years, the president of the Autism Nutrition Research Center, the co-leader of the scientific advisory board of the Autism Research Institute, and the co-founder of the Neurological Health Foundation.
Dr. Adams is a father of 3 children including an adult daughter with autism, and that is what led him to shift much of his research emphasis to autism, focusing on biological causes. His research group is dedicated to finding the causes of autism, hot to prevent autism, and how to best help people with autism. Hi research team and collaborators include many physicians, nutritionists, biochemists, scientists and other staff. Their focus is primarily on biomedical issues, including nutritional deficiencies, heavy metal toxicity, and bacterial and yeast overgrowths in the gut.

Read an Excerpt

Excerpt from Chapter Four

Ryan was the toddler from hell! Normal activities of daily life were now confrontations. Doing simple things such as putting on shoes or a coat were more than difficult for Ryan and completely frustrating for me.

Ryan confused me. There were many incidents and behaviors to indicate that my son was struggling developmentally, but I spent most of my time trying to justify his behavior. I pretended his extreme intelligence caused these immense challenges to our family’s daily life. Any connection between Ryan having a meltdown over brushing his teeth and Ryan having superior intelligence was questionable. But that’s how I coped. Making that connection comforted me and reduced my concerns about him.

Dressing Ryan was always a struggle of wills. He always wanted to play and eat before ever considering getting dressed. I compromised back then and let him eat immediately after he opened his eyes. However, on the days when the needs of other family members meant he needed to get dressed before playing and eating, a battle ensued. “Mr. Touchy Feely” only agreed to clothing that felt soft and hated anything with buttons. Wearing jeans was out of the question, and every tag needed to be cut out of every shirt.

Ryan needed to do things in the same order—always his order—and the way that he decided they should be done. When I put on Ryan’s coat, he wouldn’t go outside unless it was zipped all the way to the top. He had to wear a hood and never wore a hat. To protect his hands from frostbite, I had to fight him each and every time to make sure he wore mittens during our cold Minnesota winters. There were so many weird things about our daily life with Ryan. But doing things differently was already the norm for us. We didn’t notice the absurdity of all the things we did almost subconsciously to prevent Ryan from having another over-the-top tantrum.

Table of Contents

Preface My Son, Ryan Hinds xv

Foreword Dr. James B. Adams xvii

Introduction: Don't Believe Everything You're Told xxi

Part 1 Our Arrival on Autism Island

1 We Had No Idea Ryan Would Change Us Forever 1

2 It's a Boy! 10

3 Life Seemed Perfect and Then the Doubts Started 15

4 The Signs Were There but We Didn't See Them 20

5 Hanging On By My Fingernails 25

6 Road Rage in a Buffet Line 33

7 Nothing Was Normal Anymore 38

8 Megan Had the Answer Before We Did 45

9 I Can't Pretend This Isn't Happening Anymore 55

Part 2 A Diagnosis and a Prescription to Nowhere

10 Please Let This Be Anything Else 61

11 Our Initial Search for Answers 71

12 No Instant Cures and Many Missteps 79

Part 3 Searching for Solutions

13 Thinking Outside the Lunchbox 89

14 Everybody Had a Theory but Nobody Agreed On Anything 99

15 Finally a Doctor with a Plan 105

16 Testing, Testing, 1-2-3 and More Testing 113

17 Dr. Harvey, AKA the Cookie Monster 116

18 Getting Better Takes Time 124

Part 4 Escape from Autism Island

19 Applied Behavior Analysis-To Do or Not to Do, That Is the Question 137

20 Mindi Changes the Game 143

21 The Doctor Who Saved Ryan and Why I Cancelled Our Next Appointment 151

22 Medical Treatment Alone Was Not Enough 154

23 The Not-So-Famous "Dr. Phil" Takes Over 162

24 Gena, Babysitter Extraordinaire 165

25 It Took All of Us and Then Some to Help Ryan 170

26 Pam Changed Ryan's Life and He Changed Hers 175

Part 5 Conquering the New World

27 School, IEP Meetings, and Other Challenges 183

28 Everything Ryan Needed to Know He Didn't Learn in Kindergarten 194

29 Sometimes It's Better to Keep Your Mouth Shut 206

30 Isn't First Grade Supposed to Be Fun? 216

31 Things Didn't Turn Out Like We Planned in Life or Second Grade 228

32 Almost Normal, but Not Normal Enough 234

33 The Social Skills are the Last to Come 248

34 Middle School was Bullying at Its Worst 258

35 The New and Improved Ryan in High School 271

36 Applying to College-Could They Make It Any Harder? 280

37 The Most Important Thing Ryan Learned in College Was Not Engineering 287

Part 6 Can a Family Survive Autism?

38 Will Our Marriage Make It? 301

39 Why Couldn't I Just Be a Dad?-By Ryan's Father, Frank 308

40 There's Never Enough of Me to Go Around! 314

41 Why Couldn't I Just Be a Mom? 321

Part 7 Are We There Yet?

42 Are We Ever Done with Our Kids? No! 327

43 If You Don't Know Where to Start, Start Here 331

Epilogue: We Must Win This War! 341

Part 8 Appendices and More Info

Appendix I Frank's Letter to the Doctor Who Diagnosed Ryan 353

Appendix II Autism-The Real Story Needs to Be Told 356

Appendix III Autism Groups, Another Way Off the Island 359

References 361

Bibliography 364

Acknowledgments 367

About the Author 369

Editorial Reviews

"Parents need to read I Know You’re In There. This motivating and encouraging story proves that optimal outcomes are possible for children with autism when families look positively to the future by embracing cutting-edge medical treatment combined with standard-of-care rehabilitation.”
—Richard Frye, PhD, MD, Chief of The Division of Neurodevelopmental Disorders, Phoenix Children's Hospital neurologist and autism expert

“I Know You’re in There is an inspiring true story of one mother’s fight to help her son overcome autism. Ryan’s recovery involved a combination of approaches, including biomedical therapies, behavioral interventions, as well as love and determination. It is a very personal story about the challenges their family faced, and how they overcame them. It shows what can happen for some children, and we hope for many more as we learn more about effective treatments for autism.”
—James B. Adams, PhD, Autism/Asperger’s Research Program Arizona State University

“Marcia Hinds provides a detailed case history of how her child responded to various treatment interventions, many of which are not yet considered evidenced-bases by the scientific community. I truly hope this book will inspire researchers worldwide to study these interventions. Once validated, these treatments will likely become accepted by the autism and medical communities and covered by health insurance companies." 
—Steve Edelson, PhD, Executive Director, Autism Research Institute

“Ryan’s recovery was not miraculous. It was the result of having his medical illness treated. His family persisted in looking for answers until they found a doctor who would do just that. Maybe that was the miracle.”
—Bruce L. Russell, MD

“This book is a MUST read for any family struggling with autism. As an immunologist, my intuition said my son’s dysfunctional immune system was at the core of his illness. Marcia’s experience correcting Ryan’s immune system and recovering the whole child is shared openly and honestly in this book. The Hinds family could have taken the easy path, walked away from Autism and moved on with their life. Instead of letting others figure it out for themselves, Ryan’s story will inspire and inform crucial medical and educational decisions. This unique book offers the hope and tenacity parents need to find the answers for their children in the midst of a journey that is turbulent and not linear. Hope is contagious. Now that we know what is possible, we must never give up on recovery.”
—Melinda Borrello Sharma, PhD, director of Autism Spectrum GPS, LLC

“I Know You’re in There shows that autism is not a hardwired impairment stamped into the brain by the child’s genes and destined to remain fixed forever, as we’re often told. Instead, it is the TOTAL LOAD of challenges to a child’s whole system that overloads the brain and causes
the behaviors associated with autism. Even a few treatments that reduce the load and increase supports can make a huge difference. Ryan’s recovery is a testimony to this approach.”
—Martha Herbert, MD, Harvard neurologist, researcher, and author of The Autism Revolution
 
“I Know You’re in There should be given to every family when they receive an autism diagnosis. This book will help parents understand the importance of digging deep to identify possible underlying immune dysfunction rather than just accepting therapy alone as the only option for improving development. More importantly Ryan’s story should serve as a source of encouragement to families struggling to manage daily life as they navigate the challenges of this complex disease process. The title is perfect. If you know your child is in there, use this book to inspire you in the hardest of times to never, ever give up hope that you can find a path to recovery.”
—Victoria L. Falcone, DO, Falcone Center for Functional and Integrative Medicine
 
“After reading Ryan’s story, parents will realize there is hope and recovery is possible. This book shows the medical treatment is different and individual for every child. I Know You’re in There helps the reader understand that medicine alone is not enough. We must use a child’s interests and strengths to help them overcome autism.”
—Sidney McDonald Baker, MD, founder of Autism360.org
 
“There is an urgent need for the worldwide autism paradigm to change: children with the diagnostic label of autism are medically ill and need help. With proper medical intervention, they can recover or significantly improve in health and function. Every child deserves that chance. Marcia Hinds’s book, I Know You’re in There, encourages parents, therapists, and others to give these precious children this opportunity. Marcia wants all children to have what her recovered son now has; she can’t leave the other kids behind.”
—Ed and Teri Arranga, president and executive director, AutismOne

“We live in a world where psychiatric diagnoses, like autism, are treated differently than any other medical condition. Once a psychiatric diagnosis is made, there is no consideration of the biochemistry involved in a diagnosis or that changing the biochemistry can change outcomes. Marcia Hind’s book, I Know You’re in There, serves as a reminder that autism is a neurologic condition with causes and solutions. It shows parents and physicians that when a child gets proper medical intervention recovery becomes possible. I have witnessed first-hand my autism patients regain their health. Ryan’s story is a beacon of hope for all families with children on the spectrum.”
—James Neuenschwander, MD, director of the Bio Energy Medical Center

“Ryan’s story of diagnosis and recovery illustrates that there is a medical basis for most, if not all, cases of autism. Today, powerful technologies are available which can help doctors make a more accurate and timely diagnosis of this medical basis. If there is one message in this book it is Never give up trying!”
—Rosario Trifiletti, MD, PhD, pediatric neurologist, PANDAS/PANS Institute

“A compelling story of a courageous mom who helped her son overcome the challenges faced by Autism. She inspires all parents to never give up and how important it is to not overlook the biomedical component. A must read for ALL parents!”
—Alisa Wolf, Med-SPED, executive director/founder, Actors for Autism

“I Know You’re in There presents a wonderful example for families dealing with autism. With knowledge, flexibility, patience and creativeness on the part of both parents and health care providers, it becomes possible to address the root medical causes of autism. Ryan’s story provides hope. With perseverance and proper treatment, children with autism can improve. Some who might have unnecessarily drifted through life with limited abilities and untapped potential can even achieve ‘normalcy’.”
—Morton M. Teich, MD, Pediatric Allergy and Immunology, former president of the American Academy of Environmental Medicine

“Too many parents of children diagnosed with autism are told that recovery is not possible. In I Know You’re in There, Marcia Hinds courageously retells the story of her son’s journey out of autism and provides hope and inspiration for the millions of families affected by the tidal wave of chronic childhood illnesses sweeping through our world. While everyone’s route to recovery will be different, Ryan’s story reinforces what we know to be true: Children can get better!”
—Beth Lambert, author of A Compromised Generation, executive producer of the Canary Kids Project, executive director, Epidemic Answers

“Families must realize that successful individuals with autism are no longer a ‘fluke.’ It takes educating yourself, tough decisions, and perseverance. I Know You’re in There offers real life solutions to families. Ryan triumphed because his family educated themselves and combined multiple approaches for his success. Exciting!”
—Ann Millan, author of Autism—Believe in the Future

“I Know You’re in There is a compelling read that helps parents realize they are not alone while facing the challenges, along the autism road so many of us travel. In this inspiring story told so well by Marcia, we all share a renewed hope for the future of our children.”
—Karen Simmons, founder and CEO of Autism Today, co-author of Chicken Soup for the Soul, Children with Special Needs

“Ryan’s success demonstrates the effectiveness of the UCLA (Lovaas) Model of Applied Behavior Analysis. ABA was in its infancy when Ryan’s program began twenty years ago. Now, even more empirical research and data are in and show that what happened for Ryan is possible for others with autism. I hope that Ryan’s success story, as described in I Know You’re in There, will inspire others to take this challenging but worthwhile path toward recovery.”
—Scott Wright, president and CEO of Lovaas Institute and LIFE Midwest, Inc.

“The combination of hard work on the part of the parents, teachers, therapists, and medical care specifically for the treatment of autism can make children improve dramatically. But in Ryan’s case it resulted in complete recovery. This book gives us all hope for the future.”
—Katherine E. Robertson, RN, MSN, LTC (ret.) U.S. Army, founder of the Northern New York Autism Foundation

“When I first met Ryan around age five, he was disengaged and had significant social and communication problems. While Ryan’s deficits were extensive, he made remarkable progress after we implemented the Applied Behavior Analysis program designed specifically to meet his needs. I feel fortunate and proud to have been a part of his amazing success and continue to be inspired by him and his family’s relentless dedication that lead to his recovery.”
—Mindi Fisher Pohlenz, BCBA, MSc SLT,director of the Behavior Intervention Group

“I Know You’re in There is an important book for families dealing with autism. This heartfelt story destroys many of the myths associated with the diagnosis. Readers will come to understand how autism can be treatable and surmountable when children receive proper interventions for their medical needs. We want to thank Ryan and his family for bravely sharing their story because in doing so they will undoubtedly help other families looking for answers.”
—Treating Autism nonprofit, United Kingdom (Treating Autism provides support to families affected by autism)

 

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