Helen Conroy - The Thinking Moms Revolution: Autism beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue Their Children

Dont judge each day by the harvest you reap
but by the seeds you plant.

Robert Louis Stevenson

Copyright 2013 by The Thinking Moms Revolution LLC

All Rights Reserved. No part of this book may be reproduced in any manner without the express written consent of the publisher, except in the case of brief excerpts in critical reviews or articles. All inquiries should be addressed to Skyhorse Publishing, 307 West 36th Street, 11th Floor, New York, NY 10018.

Skyhorse Publishing books may be purchased in bulk at special discounts for sales promotion, corporate gifts, fund-raising, or educational purposes. Special editions can also be created to specifications. For details, contact the Special Sales Department, Skyhorse Publishing, 307 West 36th Street, 11th Floor, New York, NY 10018 or .

Skyhorse and Skyhorse Publishing are registered trademarks of Skyhorse
Publishing, Inc., a Delaware corporation.

Visit our website at www.skyhorsepublishing.com.

10 9 8 7 6 5 4 3 2 1

Library of Congress Cataloging-in-Publication Data is available on file.
ISBN: 978-1-62087-884-2

EISBN: 978-1-62636-299-4

Printed in the United States of America

To the revolutionaries who carved the path before
us; to all the Thinking Moms and Dads who keep
us moving forward each day; and to our children,
whom we will carry to the finish line of health,
healing, and recovery. We love you.

A utism. Let me say it again: Autism. How does that word make you feel? What emotions does it bring out? Fear? Sympathy? Empathy? Autism. But its not just a word. If only it could simply be a word in a medical dictionary that describes a neurodevelopmental disorder that affects 1 in 10,000 children. Thats what autism used to be. It didnt affect your family. It didnt affect your neighbors child. Autism wasnt on your street, and it probably wasnt even in your zip code. Autism was in a movie, and that was about it.

So what the freaking hell happened?

Autism is now in your family. Its on your block. Its a child in every kindergarten class. There are entire classrooms devoted to autism in every public school. Autism is no longer just a word; its life for over a million people in the United States. And it isnt pretty. Theres nothing glamorous about raising a child with autism. Its brutal. It tears families apart, after it bankrupts them. Autism. One percent of children have it. Two percent of boys have it. Autism can no longer be ignored.

Ignored? Who the hell would ignore such a problem? The American medical community, thats who. When autism exploded in the 1990s, parents cried out for help. These children needed treatment, but insurance didnt cover it. These parents wanted answers, and doctors said Answers to what? Theres no rise in autism, and theres nothing we can really do for it anyway, so what do you want us to do about it? Parents were literally left to fend for themselves to find answers and treatment optionsalone. If there is one word that accurately describes families who were caught up in the first wave of the autism epidemic, it is alone. Alone with no answers, no friends, no cures, and no resources.

Well, nothing brings about change like a group of dedicated parents who are fighting for their own children. The Thinking Moms Revolution is one such group, and boy, are they on fire! And they have a story to tell. Twenty-three stories, in fact. And they are not just about autism. You will read about ADHD, dyspraxia, sensory processing disorder, and other learning and developmental challenges. You, and I, and every person on the planet has a responsibility to hear their stories. Not for their benefit, but for yours. For mine. We owe it to ourselves to experience, page by agonizing page, what a family goes through when they see their happy, healthy, talkative little toddler lose it all and decline into autism. The denial. The anger. The guilt.

Why? Why should you care what they went through? Of course, if you just found out that your own child has autism, you probably care a great deal, and you are eager to soak up every page. But what about the rest of us? What about the 87 out of 88 of us who dont have a child with autism? Why should you care? Because this book will make you examine your own understanding of autism. It will challenge what you believe causes, or doesnt cause, autism. It will illuminate the myriad treatment options that are available. But most importantly, it will make you a better person. Next time you are in the grocery store and see a six-year-old nonverbal child having a complete meltdown, instead of frowning and thinking what a bad job that parent is doing, you can go up to them and say, I get it. I dont have a child with autism, so I dont totally get it. But Im trying. Can I give you a helping hand? When your best friends toddler begins flapping, spinning, and obsessing about trains, you can stick by them, love them, and help guide them through the coming years because youve learned empathy. When your own child tells you that his friend in third grade seems a little strange and talks funny, you can teach your child how to love unconditionally as you befriend and embrace that family.

The Thinking Moms Revolution isnt looking for sympathy, and neither is any other family with autism. If you want to sympathize and shed a tear for them, do so, then get over it. Once you are done, step up and love them. Embrace them. Engage them. Not for their benefit, but for yours. And you will have plenty of opportunity to empathize, as autism continues to rise at an alarming rate. The latest numbers (1 in 88) arent actually the latest numbers at all. This statistic is 13 years old. It refers to children who were born in the year 2000. Back in the 80s it was 1 in 10,000. Then wham! Kids born in 1994 were found to have a rate of autism of 1 in 150. Nobody panicked (except about 1 in 150 of us). Kids born in 1998 were found to have a rate of 1 in 110. You do the math. What do you think the rate is for kids born in 2004? 2008? 2013? The Centers for Disease Control only determines the rate for a certain year once that group is eight years old. Then it takes a couple years to gather the data and publish it. So, we wont actually have numbers for 2013 until somewhere around the year 2023.

As a full-time practicing pediatrician, I can vouch without a shred of doubt that the rate continues to rise. I see more and more seemingly healthy infants develop autism signs during the second year of life. It concerns me that the rate is now much higher than 1 in 88. And we still dont know why. You will read various opinions from the Thinking Moms here, but based on available research, we just dont yet know why. What angers me is that the medical community should have started examining this question twenty years ago. Instead, (almost) all put their heads in the sand and decided there was no increase, there was no epidemic, so there is no reason to examine why. Now that everyone agrees there is a definite increase, research into whats causing autism has begun. I know well find the answer some day, but its an answer that will come twenty years later than it should have.

In the meantime, what can we do? We can detect it early, so that early treatment can increase the chance of recovery. We can embrace complementary and alternative treatments that work. We can take some preventive steps with our health before and during pregnancy, and during the first years of a babys life. We can do the best we can to treat each and every child with autism to the best of our abilities. And we can love these children, and their mommies and daddies. We can understand what these children go through during their years of therapy, what their parents go through emotionally and financially, and how these families fight for their children to get them to where they are today.