Beginning my Autism Project

One of my top strengths, according to an assessment I took many years ago, is something the program called “Woo.”  Most people I know who have this strength are extroverted individuals who love to socialize and party. Well that description does not fit me! I am an introvert who prefers one on one conversations rather than large crowds.

I remember that for many years I jokingly told my husband that I must wear two signs that many people can’t see. The first sign said, “I am a Kindergarten teacher, so if you are under 6 and see me in the store come and talk to me. I am not a stranger.”  I would just smile at a kiddo and he or she would start talking to me, leaving parents worried, I’m sure, that I was a kidnapper in disguise! My second sign said, “Tell me all your problems, especially those that others would consider TMI.”  There was a time I knew more about mere acquaintances than seemed appropriate. Really, why are you telling me this?! Yet, I always tried to provide an understanding ear.

I realize, now, that I actually wore and still wear a third sign. It reads, “It doesn’t matter if you never saw me before, strike up a conversation with me and we will find something in common.” I can encounter someone in the grocery line or shopping over a pair of pants and walk away knowing her life story, through asking curiously strategic or strategically curious questions, and then just listening. Once I even had lunch with a lady who was buying the same jacket as I was! This is what Woo looks like in me.

I guess it is this same talent, if you want to call it that, which enabled me to call mothers of children with autism and ask them to share their stories for what I identified as “a project I hope will turn into a book.” With each of ladies, some of whom were mere acquaintances and others total strangers, I put a recorder on the table between us as I asked her to tell her story. Each of these women talked for well over an hour, with few prompts from me, sharing events and realities from her daily life as a parent of a child or children on the spectrum. Only then, did I begin to ask a few interview-like questions.

When I first began the writing portion of my autism project, I shared the stories as they were told to me, adding my own narrative to fill in background and describe the emotions that these women showed as they opened their lives to me. I loved so many aspects of the way these accounts unfolded and could imagine how these stories would benefit other families who were just beginning their journey.

I changed the names of the children and the schools in an attempt at providing privacy, however, my stomach literally churned when I realized that this was not enough to protect the anonymity of the families. I know that in my city, the community of families of children with autism is interconnected in many ways. Some of the families who shared their stories knew each other. Although all the parents told me that I could share everything they said, I quickly realized that some details of their stories made them readily identifiable. Someone might easily recognize a family through some of the innocuous details of their road to diagnosis, the family make-up, or a particular path through the educational system. That seemed pretty harmless. Once I got to details in the story that shared more personal information about how parenting a child with autism challenges a marriage, or how family finances are affected by having a child with autism, or about a time the family had to call the police to help them manage their older child in melt-down mode, I knew that I was not comfortable with the way in which I was reporting these personal details.

I eventually decided to divide the stories by topics, such as funding, marriage, education, and meltdowns. The first rewrite began. The rewrites continue.

One response to “Beginning my Autism Project

  1. Your project sounds fascinating. Keep us updated!

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