Did We Do Enough?: On ABA and Growing Up

by Kristina Chew, PhD on March 13th, 2007

Hurry, hurry, hurry.

That was the message we kept hearing throughout the first six or so years of my son Charlie’s life, after he was diagnosed with autism in 1999, shortly after his second birthday. Get started on Early Intervention, intensive ABA for forty hours a week, and everything else you can—-the young brain is still plastic, those neural connections are still forming and if you do enough you may be able to rewire his brain. And so we did, from the forty hour per week in-home Lovaas ABA program to the gluten-free casein-free diet, to various nutritional supplements, to anti-fungal therapy—-not to mention speech therapy, OT, music therapy and, somewhat later, cranio-sacral therapy with a bonafide faith healer, and various other treatments biomedical and otherwise.

Words like these quoted in a March 12th Ped Med: Timing key to treating autism article echoed constantly in my thoughts:

If you have a child with autism who’s not wired correctly, and we allow that to continue without intervention, those neuropathways will become fixed, and it becomes far more difficult to undo that tangled mess,” said Dr. David Holmes, president of the Eden Institute, a non-profit autism center in Princeton, N.J.

Hurry, hurry, hurry.

When Charlie turned five, we were living in a rented condo behind a high school football field; my husband Jim and I had both given up our jobs in the Midwest to return to Jim’s native state for the autism schools and services. Charlie had initially been placed in a preschool special-ed classroom, struggled, and then went to a self-contained autism classroom. His new teacher was fabulous, a warm and warmly enthuasiastic woman of high standards and a big heart. Still, I felt a tug inside of me to know that Charlie was the oldest in her class and seemed to talk the least. To address his apraxia, we got back in touch with a friend from Minnesota, a gifted speech therapist who had chosen to specialize in working with autistic children and one of Charlie’s first therapists ever, and he continued to do ABA sessions with two young therapists, under her and my supervision.

I could not help noting that the other five-year-olds with autism in our town all seemed to be mainstreamed in kindergarten with an aide, while Charlie could not say his name clearly and did not know all the letters of the alphabet. He sometimes hit his own head.

Had we done enough?

Six years old became seven: Charlie moved from one self-contained autism classroom to the next. We bought a house in a town much closer to New York City where Jim was now teaching, and closer to my job in northern New Jersey. After a pleasant enough start, Charlie had a tough time settling into his new classroom. (There was a bad moment in a neighbor’s driveway.) After a few months, he was placed in a class with a new teacher and some good months followed, and then some okay ones (with some bad moments), and then we again contacted our speech therapist friend from Minnesota. At this point, we were no longer doing home therapy aside from speech: Enough, it seemed, was enough. Now, after a year’s hiatus, we started up a home program combining speech, social skills, and lots of play, and Charlie was again running to look out the front window for the therapists’ cars.

It was a few months after this that Charlie’s days at school became more and more difficult—that I started to get regular calls from the school nurse about him “bumping his head”—our friend from Minnesota observed him in the classroom and, as soon as she got back in our car, told us, “You have to get him out of there,” and the odyssey to find Charlie a new school that I chronicled partially on Autismland began. Things got worse and more worse before we finally found a new school for Charlie in December 2005, sighed deeply when that school closed, and left our house to move into my in-laws’ house in June 2006. Since then, Charlie has been in a self-contained autism classroom and he has never done better.

And not only in terms of him not having the sorts of behaviors that led to the school nurse constantly calling me. He is learning to read after trying to learn for the past five years. He is talking more and more on his own; helping out at the grocery store by carrying the basket, choosing things, carrying out the bags; helping out at home by putting away the groceries and taking out the garbage; grinning to read the word “leprechaun” on a card my sister sent; taking himself to bed. And I trace the reason for him doing all this, and in such a peaceful easy-feeling way, to his good school placement and teachers and his home ABA program (which we began again a year and a half ago)—-and also to the simple fact that Charlie has gotten older. That 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—indeed, we think that he was born with autism—-I suppose I might rather say that Charlie is growing into his autism. He notices much, observes carefully, sizes things up. He understands more—as does any child of nine going on ten.

I have been reading Michelle Dawson on whether those forty hours are so “necessary,” and her other critiques of Lovaas’ work. I think these critiques are much needed and have been learning much from her thoughtful analyses. ABA has helped Charlie to lessen his SIB’s and to learn a number of skills; Charlie’s first year doing ABA intensively when we lived in St. Paul, Minnesota, was a very good year—-in no small part due to the people (all college and graduate school students) who were his therapists. Jim and I often think that their good spirits and warm liking for Charlie—we all had too much fun—fueled his progress as much as the careful tallies of data and drills that we kept. The program was about people first, and Charlie forged as strong of relationships with these young women as he already had with Jim and me. Charlie learned how to learn and learned how to talk.

My sense from living all these years with Charlie, and from teaching Charlie for all these years, is that he truly needed all of that therapy and he still seems to need the structure that ABA can provide. I do have to say, Jim and I have had more than a few disagreements with some of our past ABA consultants (about the claims made for the therapy, for instance): There is good ABA, there is not so good ABA (and, I suppose, it must be said that there is just bad ABA too…). It is indeed some of the claims—of recovery, of cure—that have been made for ABA that I object to, as I think these are unrealistic and 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 “indistuinguishable.” Such claims are a disservice to what ABA can do: Provide a teaching methodology that enables some autistic students to learn and thrive.

I am puzzled at some of the references to an autistic child’s neurology in the Ped Med: Timing key to treating autism article. Charlie’s brain is certainly “wired” in a different way, but it is not some “‘tangled mess.”" Another image of autistic children and their brains as “damaged” and disordered occur in the Ped Med article is the statement that therapy might “minimize the damage the disorder can cause.” I see ABA as a teaching strategy that has its uses and its limits, and 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—changing every day and teaching me something new each day; who is growing into his own. I wrote this in a comment on The truth about autism: It’s not toxic:

Everyone has a different experience but our kids are great kids who will become great adults. My son’s academic skills are all hard and slowly earned but at 9 years and 10 months old, he is simply better in control of himself and his impulses, able to anticipate his anxiety and do something about it. He has also benefited from early intervention and much specialized teaching, but in the past year he has seemed to blossom. Not in any miraculous ways, unless one counts a “peaceful easy-feeling boy” who walks behind me on the sidewalk, carries the shopping basket, waits in long lines amid crowds, runs to practice piano when I ask him, as the littlest of miracles; as small blossoms making their way up through winter soil, slowly crumbling as spring warmth nears.

Sumer is icumen in.

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Did We Do Enough?: On ABA and Growing Up

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