Recharting Territories, Redefining Roles: The Issue of Relationships

Abstract

Sarah’s daughter, Ava, was identified as having a speech delay after her first birthday. She received special services with a speech therapist, and Sarah hoped she would “catch up” to meet the milestones that are deemed so important to the development of a “healthy,” “normal” child. Sarah has two older sons, neither of whom had been identified with any developmental delays, so this was new territory for Sarah. Sarah watched Ava closely, sensing that something more serious was wrong with Ava’s development. On the playground one day, she realized that instead of playing with her classmates, Ava lay on the ground eating woodchips, alone. Behaviors like this caused Sarah to feel very concerned, and she decided to take Ava to a neurologist to have her further evaluated. Sarah described her experience at the neurologist’s office the day that Ava received an official diagnosis:

Sarah: I really have to tell you that when the neurologist told me her diagnosis, I really thought he was joking. I really didn’t think he was serious.

Juliette: Had you heard of the word (autism) before?

Sarah: I did, but, I assumed that it had something to do with mental retardation. I didn’t know that it was a disorder all on its own, cuz when he said au … she has autism, I was like, “No she doesn’t.”

He was like, “Do you know what that is?,” and I was like, “Yeah, like, mental retardation,” and he was like, “No,” and then I remember, I was, asked him, I was like, “You didn’t run any tests on her.” I’m like, “You just asked me a whole bunch of questions and then you just tell me, you know. …” I was like, “Well, just give her a shot.” You know, you know what I mean, like “Give her a shot, give her a pill, what can you do?” He was like, “No, that’s a life-long disorder.” He was like, “There’s no cure for that.” And once he told me that, I was devastated. July 15, 2011