Here I have reprinted the third chapter from my book: From Prompting to Shaping to Letting Go: My Love Affair With ABA and How Being a “Bad Mom” Helped My Daughter With Autism Succeed.”
Chapter 3: What’s an Internet?
My husband and I were at a restaurant on the island with a small group of people, and after I told the person seated next to me about Katie, he informed me of a way to find out about her “disorder.” We had brought a babysitter with us to Sanibel so that she could help watch Katie, and while they stayed at our condo I was free to focus my attention on one of the most incredible things this man was describing: the Internet! He could not tell me how to access it, only that he understood it could connect me with lots of information—information that before one could only find at a library. For the very first time I was filled with hope.
There was something else I had to do while on Sanibel: I had brought with me a book that someone had recommended, and it was buried deep in my suitcase, underneath my bathing suit and T-shirts and socks. The book was called “Let Me Hear Your Voice,” and it had been written a few years before by a mother who had two children with autism. She hired a student from Columbia University in New York to teach her children using Applied Behavioral Analysis. I was heartened by the fact that Catherine Maurice’s home ABA program helped her children so much that they became “indistinguishable,” i.e., that to talk with them one would not be conscious of any previous autism diagnosis. I read the book from cover to cover in a few days, and when I told my husband that we needed to implement our own home program, he agreed and asked if I could do the teaching myself. I knew I would have to hire others to help, but I also knew that I felt no reluctance in teaching her myself. I even naively thought that I would create a program and ask the preschool to incorporate it. Surely they would implement this, I thought. After all, it’s backed by science! Reading that book was my first encounter with something real—something tangible—that offered me the tools to put together a plan to teach my daughter how to learn. Now all I needed to do was to find out more about that Internet thingy!
My first order of business on our return to Michigan was to find a way to get “online,” and I had no trouble finding a mass-produced CD from AOL. As soon as I successfully loaded the floppy disk—one that I found at Barnes and Noble but were as ubiquitous as Beanie Babies—I heard a friendly male voice welcome me and it didn’t take me long to figure out how to search for the information I needed—I was on the “Internet!” I had felt hopeful before I pushed that floppy into the slot of the tower CPU, but after I read and then printed out study results on the behavioral treatment of autism by O. Ivar Lovaas, a pioneer in the field of ABA and who developed the concept of “discrete trial training” (breaking tasks down into small parts before teaching), hopeful gave way to something much more powerful: I felt emboldened.
I decided that once and for all I needed to find a doctor to examine Katie and give her a diagnosis. I wasn’t searching for a label, but I knew that once I had a definitive diagnosis it would be easier for me to locate all relevant treatment information from the whole new world I had just discovered via the world wide web. By this time, I had resigned myself to the fact that Katie had autism since everything I had found on my online searches confirmed it. My anxiety level was high, because we had not yet begun a home program, and my husband was not entirely convinced that ABA was the treatment we should implement.
Katie soon received her official diagnosis of autism from a developmental doctor at the University of Michigan. When I informed her teachers at the preschool of her diagnosis, they showed no surprise and told me they had always believed she had the disorder but were hesitant to tell me. Their reasons? They didn’t want to upset me, and their treatment would be the same no matter the diagnosis! And when I told them about the behavioral therapy that I had been reading about, they immediately tried to dissuade me from even attempting such a scheme. They warned me that Katie would only learn rotely and that whatever she did learn would never transfer to the real world. But worst of all, they warned, the Lovaas method required the use of aversives! Whether they were told to tell parents this by higher-ups so that parents would not insist schools pay for such a program or whether they truly believed it, they were relentless.
I left the classroom a bit unnerved, and as I walked down the hall, I heard an aide shushing a child who was sitting at a desk outside the classroom. The school had touted their policy of “inclusion” many times, so the fact that this child, who was a couple of years older than Katie, was sitting at a desk outside a classroom made me angry. I suddenly had my Scarlett O’Hara moment where she vowed to never be hungry again, of course sans the lying, cheating, stealing and killing part. But it was then that I decided that no matter what, Katie would never be relegated to a desk in a hallway, and I decided that no one would dissuade me from what I needed to do: begin a behavioral program for Katie on my own and as soon as possible.
Copyright © 2019-2020 Kathleen Jae. All rights reserved. This chapter may not be reproduced or used in any manner whatsoever without the express written permission of the publisher except for the use of brief quotations in a book review.
If you are interested in my book, check out Amazon.com.