Day 105

Telling Constance’s family that she had received the autism spectrum diagnosis was complicated by neurological diversity. There is a wealth of evidence that extensive therapeutic intervention changes outcomes for most individuals with an autism spectrum disorder. This point was reiterated to me by those I recruited to Constance’s healthcare and education team. I felt my role as her parent was to make her best possible outcome a reality. As a unyielding optimist, I held to the fact that some people with autism excel at college. I saw her being the Dean one day. The fact was that most people diagnosed with severe challenges due to an autism spectrum disorder could not manage basic self-care. Constance worked her tuckus off. I still felt her future was filled with endless potential.

Telling Constance’s father that she had autism was not a pleasant experience. He began immediately doing things I resented like investigate adult living facilities for individuals with significant cognitive and neurological challenges. When an adult facility’s brochure came in the mail addressed to him I confronted him as if it was illegal contraband of the enemy. Constance was just turning three; I wanted to have help fighting for the best possible future for her. I didn’t want to concede an inch.

Like anyone in pain he lashed out. He named things from stress to my vegetarian diet as ways I could have caused Constance autism. I’m sure I said insulting things back but nothing witty enough to remember. Our words were daggers. We cut. We bled.

My biological mother and stepfather are both healthcare professionals. When I told them that Constance received the diagnosis I wanted them to tell me that the developmental pedestrian was a hack and that I should get a second opinion. They didn’t say that. As a result, I was disappointed with their sentiments even though they came love.

When telling my biological father, he responded by asking me the kind of questions you’d google if, like most people, you had no practical knowledge of the disorder. Most Americans old enough to have seen the movie Rain Man, have that reference point. For those younger, tech executives who have been accused of having Asperger’s or autism come to mind. Neither are accurate references points for any three-year-old who has been diagnosed. The saying in the community is, “if you know one person with autism, you know one person with autism.” Just like the rest of the population, they are all different.

Constance’s father told his family about the diagnosis. The subsequent time I saw Constance’s paternal grandmother she asked me over dinner, “What did you do to give Constance autism? Did you take medication or drink when you were pregnant?” I thought but didn’t say, “I had a baby with your son, that’s what I did.” I replied, “No, of course not,” and left the room crying. We have exchanged “I love yous” since then, but words, like bombs can never be taken back. The damage is real and permanent.

Teasing me about the exchange later, Constance’s father asked what I thought Constance would inherit from me? I quipped, “alcoholism and womanizing, of course.”

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