Billy clears his throat after every meal. I don’t really mean “clears” his throat. There is no proper word to depict the full body-propelling tilt combined with the sound of a violent yet unsuccessful guttural purge over time. This monumental throat vibration will at the very least inflame his entire esophagus tract. Although I am sorely tempted to ignore this daily reality show, a proper investigation can no longer be “put on hold.” The medical puzzle is why does Billy persist day after day in conducting such ungratifying exercises? What purpose does it serve? Does this communication behavior infer an undetected source of pain? No one can answer that question without performing some tests. One of the tests we tried was a barium swallow. So armed with some facts and googled research, we piece together as best we can what will actually take place.
Prior to our visit, Billy reviewed the social story. The narrative written by me informed Billy that the test was like an x-ray except with liquid drinks. He knew that he would sit, drink this barium cocktail and then lie down on the table and wait for the x-ray. It was an “easy” test.
What Billy didn’t know was that the radiology team expected and directed him to lie down on the machine and sip from a straw in a supine position. Billy growled. The medical team assumed immediately that Billy didn’t care for the taste or the texture of the drink. For some individuals on the autism spectrum, this conclusion might be accurate. But not in Billy’s case. No one likes an unexpected switch in the game plan and neither does Billy! What got him irked was the unrehearsed deviation from the social story, better known as the “deal.” So Billy vocalized adamantly his disapproval. No problem.
But then they informed me that Billy needed to move from his back to his side. The visual and the text denoting the “side” of the body was in the carefully crafted social story, but it didn’t matter. Billy couldn’t in that instant decode the message. Pointing to the specifics in the social story or telling him to turn on his side did not translate! For Billy, I spoke a foreign language. Billy was going nowhere. So I did what I’ve done so many times – I “ad-libbed.” Determined to complete successfully this barium swallow exam, I looked at Billy and said, “do this.” With my radiation-proof vest wrapped and tied around my torso, I laid down on my side on the cold tile floor and looked up at Billy on the x-ray table. Billy understood my interpretation and without further adieu, turned on his side. Yes, we completed the test. More importantly, Billy was spared the frustration and social humiliation that signifies a breakdown in communication.
The dilemma is that the doctor who authorizes the test is not the doctor who will conduct it. Doctors are dedicated and engaged in their patients care specific to their expertise. The current system, however, is not designed to value the time required for doctors to communicate to referred doctors the patient’s communication issues and needs. Neither is there time slated to assess and communicate to the family all the steps involved. Billy and all his compatriots need to know the facts. Knowing what will take place, in what order and when it will be finished cinches the deal.
This is a modified version of an article which first appeared on the Voice Colors Blog.
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.