Act I, Scene I
We are aiming toy trucks down the shiny hospital hallway at our recalcitrant seven-year-old autistic son, attempting to lure him from the waiting room to the doctor’s office. Another doctor is on deck. Then a speech therapist. Between each, waiting room time. That’s five transitions between providers.
And that’s on top of the disruption to his routine forced on him in the first place. It’s a Thursday, a school day. But before it will approve the treatment we want, our insurer requires us to travel to this autism “center of excellence” 150 miles from home to obtain a redundant diagnosis.
Together with social and communication impairments, reliance on routine and intolerance for transition are hallmarks of autism. We could have been placed in an exam room and the providers brought to us. The circumstances of the appointment are completely counter to what’s optimal for the patient, whose anxiety is now at fever pitch. This is excellence?
Act I, Scene II
I return the hospital’s customer survey with negative answers. I call the Patient Relations Coordinator and leave a message, unreturned. Finally, we talk. Afterward, I receive a letter accurately summarizing the conversation and my two chief recommendations. In addition to the transitions between providers, we were told to bring his records. Thus, no one knew anything about our son’s history until he was standing there. Redundant questions and inefficiency ensued, made worse by the stress of the transitions. My radical solution? Request the records ahead of time.
The letter says my feedback has been forwarded to “program leadership for review and follow up.” It is signed by an RN. Feeling better that someone with actual clinical experience is handling patient relations, I file the letter and move on.
Act II, six months later
Autism parent support group meeting. A new man is there, actually a grandparent. He mentions they sought a diagnosis for his grandson at the same facility we did. Did they go from doctor to doctor, or stay in one place? Doctor to doctor, he says, adding they also brought a three-inch stack of medical records. Cue sigh.
I still have the contact information from the RN Patient Relations Coordinator. Maybe program leadership did review my feedback and discarded it. And would you like to buy a bridge to go with that delusion? No, they kept on keeping on the way it was set up, in their best interest instead of patients.
So why do I bother trying to communicate at all? We got the diagnosis we came for. It’s over.
Because I keep thinking about that next child. That two- or four- or five- or eight-year-old who, like my son, will lie on the floor next to the elevators and simply refuse to move. Who will cry and shriek and carry on as their parents slide cars at them. Whose anxiety will soar needlessly. Whose parents’ hearts will break, wondering whether it’s worth it.
Act III, Act IV, Act V don’t have to play out, ad infinitum. It’s not just bureaucratic. It’s tragic.
Cari Noga is the mother of a seven-year-old son with autism and the author of Sparrow Migrations, a novel about a 12-year-old autistic boy who becomes obsessed with birds after witnessing the Miracle on the Hudson plane crash. She lives in northern Michiganand blogs at www.carinoga.com.