by Kristina Chew, Ph.D.
Kristina Chew, Ph.D., is an Assistant Professor of Classics at Saint Peter's College in New Jersey. She writes the weblog Autism Vox and is writing a book entitled The Education of Charlie Fisher.
When I first heard about ABA and what a home therapy program entailed, my thought was I certainly don't want to be doing this when Charlie is five years old. That was the summer of 1999 and Charlie, who had just turned two years old, had just been diagnosed with autism. I thought: We would "win" the fight or war "against" autism. We would not have therapists—"strangers"—still coming to our house after a few years devoted to recovering Charlie. We would be done.
Flash forward to eight years later. We are still doing ABA, attending clinic meetings, laminating and velcro-ing flashcards, brainstorming reinforcers. The truth of the matter is that, ever since my now-10-year-old autistic son Charlie started a ABA program in September of 1999, ABA has become a way of life for my husband Jim Fisher and me. Thanks to ABA, Charlie has learned to ride a bike and to get his hair buzz-cut by a barber. Thanks to ABA, Charlie is learning to play the piano. Thanks to ABA, Charlie first learned how to learn when he was just over two years old; thanks to ABA, Charlie can talk. ABA has simply become part of Charlie's education, far beyond "Early Intervention."
Throughout the first six years of my son Charlie's life, the message we often heard was hurry, hurry, hurry. Get started on Early Intervention, on intensive ABA for forty hours a week, and everything else you can—-the young brain, we read, is still plastic; neural connections are still forming; if we did enough, it might be possible to "rewire" Charlie's brain. Some children, we heard, even "lost" their diagnosis of autism and could be fully mainstreamed in school without needing special education services. Besides our intensive ABA program, we put Charlie on the gluten-free casein-free diet and various nutritional supplements, did anti-fungal therapy and some other biomedical treatments, as well as speech therapy, OT, music therapy.
Today, Charlie is in a self-contained autism classroom (with a 1:1 teacher: student ratio) located in a school in our town. He does ABA therapy with Lovaas-trained ABA therapists three times a week; we have discontinued most of the biomedical treatments. Charlie will need special education for the rest of his school years after which we hope that he will be able to get a job (involving some kind of physical exertion—Charlie is not one to sit at a desk in front of a computer) and, in time, live in a group home: Autism is a lifelong neurological disorder and Charlie will always need support.
If Charlie is never going to be fully independent, is not going to attend college, will never be fully "indistinguishable," will always be disabled, why do we still do ABA? Did all the ABA not really "work"? Did Jim and I not try hard enough, or not do enough?
The answer to all of these questions is "no." Charlie would not be where he is today without all that we have done, without all the ABA he has done. Though he is older, ABA is still the best way to teach Charlie. When Charlie went through a regression when he was 6-9 years old—during which he became aggressive, his self-injurious behaviors (head-banging) became so frequent that we feared constantly for his safety, and all of his academic learning came to a halt—it was thanks to ABA and the hard work and insight of his Lovaas consultant and therapists that he got better.
Charlie's education has followed a more complicated path than we initially envisioned. Charlie started doing ABA in September 1999 under a Lovaas consultant in Minnesota. In 2001, we moved back to New Jersey, where Charlie went to school in a self-contained autism classroom that used ABA; he continued to have a home ABA program. In 2003, we moved to a town in northern New Jersey much closer to New York City and to Jim's and my jobs. Thinking that Charlie needed to do "something different" from ABA, we took something of a hiatus from a home ABA program when Charlie was 6-7 1/2. Charlie remained in self-contained autism classrooms. In 2005, he started to have more and more behavior issues and every day at school became difficult. I started to get regular calls about him "bumping his head" (as the school nurse euphemistically put it); during summer school, a principal demanded that I take Charlie home right now because his challenging behaviors had become "too challenging." Things got worse and worse before we took Charlie out of his public school classroom and his Lovaas therapists taught him at home. We finally found a new school for Charlie in December of 2005, sighed deeply when that school closed, and left our house to move into my in-laws' house in June 2006, as we had learned that their town has an excellent ABA-based autism program.
Charlie has never done better in his current classroom which uses ABA to teach everything from reading to conversation to teeth-brushing. Charlie is learning to read after trying, and getting stuck, for the past five years. He is talking more and more on his own; helping out at the grocery store by getting items as requested and carrying out the bags; helping out at home by putting away the groceries and taking out the garbage. He can read music. I trace the reason for Charlie doing all this, and in such a peaceful easy-feeling way, to his ABA classroom and his teachers, and his home ABA program, and, too, to the simple fact that Charlie has gotten older. Charlie is growing up. I do not mean that he is "growing out" of his autism. Charlie has autism and will be autistic for life. Charlie notices much, observes carefully, sizes things up. Charlie at ten now understands more, and more than ready to learn than ever.
Some of the claims—of recovery, of cure—that have been made for ABA can give parents false hopes. We were often told that there was a "brief window" of time to have Charlie do a lot of therapy in the hope that we would be so "lucky" that he might become "indistinguishable." Such claims are a disservice to what ABA can do: Provide a teaching methodology, and a powerful one, that enables autistic students to learn and thrive and lead good lives. The good therapist—the good teacher—knows when to adapt, when to be open-minded, especially in the face of a boy who is growing up and changing every day; who is growing into his own. Older children can benefit and need ABA—need good teaching—just as much as young children. It is never too late to learn, never, ever, too late to give kids like Charlie a chance.
The names of all children in this newsletter have been changed in respect for family confidentiality.