What a Parent Sees: Unbiased Functional Behavior Assessment

Diagnosis: Autism Spectrum Disorder

When our very young son was diagnosed with autism in the first years of the millennium, it was a fright and a challenge. Both his parents had been perfect students, but our son was a “behavioral” mess – a mystery standing right in front of us. Applied Behavior Analysis (ABA) is still the single most researched therapy for autism. To learn how to help him, I attended weeks of parent workshops on ABA at a small, renowned local autism school.

I began to learn the language and logic of teaching and changing behavior with ABA. Screen Shot 2016-04-07 at 12.13.57 AMWhatever increases a desired outcome is “reinforcing” it, so it is a “positive reinforcer.” If I could became a contingent rewards-giving engine, reinforcing good things,

upset and wet, from http://www.therapee.com

 …could my “behavioral” little boy become perfect?

The things that worked to “reinforce” my young son felt unnatural to me. He loved to hold a certain toy – not play with it, just hold it. Chicago and Delta blues CDs cheered him up, so he would settle down. When I was his cheerleader, he didn’t appreciate the praise; my oversized reactions made him squirm. Instead, to show appreciation I might sing an entire Raffi children’s folk song, or play Sesame Street songs on the piano as he turned pages of the music. It took him many years to accept, let alone appreciate, my verbal praise.

Words and Music

He couldn’t speak a word, and he did not yet have other ways to communicate. But he liked calm-toned explanatory “lectures” from me, even though he understood very little (about gardening, nutrition, engines, colors, spices, geography, maps…). My words seemed to give him confidence. He also appreciated my regular explanations of what other people were doing, where they were standing or going, and why.

The A-B-Cs in ABA

In ABA to figure out what behaviors were problems, and their root causes, my fellow parents were trained in the A-B-Cs: “A” for Antecedent, “B” for the target Behavior, and “C” for Consequence, that which happens after the behavior. (Our son had soooooo many “Bs!”)  In ABA theory, if you alter “A” and “C,” you can change “B” over time.

My Little Runaway

“Eloping” conjures images of star-crossed lovers, but in the autism world, elopement inspires nightmares. My son still cannot cry out when lost or hurt, so I would despair that I might lose him forever in any crowd. I’d lose my mind, but it was clear he was unaware of the difficulty. I explained my distress, trying not to punish him when he strayed. In time he grew up.

Intentional Accidents

It was so hard to see him flounder in his middle school years. He’d not made much progress in several years. School said he didn’t know any letters, but I observed him to understand some written words and sentences at home and in the community. Each teacher and behaviorist had assessed the “antecedent” of his frequent toileting “accidents.” His goal was “attention-getting” or “escape” from demands. I feared that his father’s death, which had coincided with starting toilet training, had scarred him. One school prescribed that his day be mostly spent in the bathroom or on “breaks” chewing gum, as treatment to prevent or reward.  His teachers and I had thought ourselves into a corner with our preconceptions of ABA’s A-B-Cs.

Serious toileting issues continued into his teens, when his other behaviors were getting better. Sad to say, “accidents” reduced his participation in children’s groups, outside activities and with extended family, as well as his participation and attention span in school. Bad attitude? Attention-seeking? I couldn’t accept that my son was so twisted.

“The fault (dear Brutus) is not in our stars…”

Home is not school. When I finally collected other kinds of data at home, his problem was obviously medical. No one had calculated the sum total number of times he was peeing in the day. He was trying hard, with at least 15 toilet trips in a 14 hour period, regardless of where he was or what he was engaged in. Unless he refused to sleep in order to stay dry, he had multiple leaks nightly.

“Cure”?

With this insight, we worked with one pediatric urologist, then a second, for years. Finally a third doctor truly listened and suggested what proved to be a “cure.” Within 2 months, this lifelong “behavior” was fixed by an over-the counter drug, without surgery, and not by a behavior plan. Detailed data covering the full day and night, viewed without preconceptions, revealed the problem. Extra benefits to my son from no more urinary urgency have been that  elopement, attention span, and academic performance improved, and his lifetime and social prospects are better, too.

It’s a relief for us both!

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