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Denise Henry Headshot

Why I Want to Be My Autistic Daughter

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I'm not a Trekkie. I watched one or two episodes of Star Trek as a teen, but there was nothing about the TV show that really held my interest.

But after watching Rebecca Saxe's TEDTalks about "How We Read Each Other's Minds," this Mama of 3-year-old twins (one on the spectrum) and a 6-year-old, loves the idea of using the Vulcan mind meld to read my children's minds. Most days, my kids are just being kids; exploring, testing boundaries, asking endless questions, and constantly learning about the world around them. But other days are filled with them acting in ways that defy understanding. Usually, the reason for their antics is either hunger or fatigue. But after crossing those reasons off of the list, I am often left clueless trying to figure out why my children behave the way that they do.

This is especially true with my daughter, Nina, who was diagnosed with PDD-NOS in 2011. While her vocabulary is quite large, her ability to answer questions about her behavior is limited. With her older brothers, getting to the root of their actions is much easier.

Me: "Joey, why are you poking your brother in the eye?"

Joey: "I want Thomas and he has Thomas."

Me: "Isaiah, why are you crying about tying your shoelaces?"

Isaiah: "My fingers aren't working right! I keep trying but these shoelaces are making me mad!"

But when Nina is having crying fits, understanding her thoughts and emotions and getting an answer from her on why she is acting the way she is, is much more difficult.

Me: "Nina, it's OK. Tell Mama what you want."

Nina: "Look, Joey's sharing! Joey's sharing!" She is pointing at Joey holding an action figure toy.

Me: "Huh?"

Nina: "Joey's sharing!"

Me: "Yes, everyone shares the toys in this house. Joey is using it now, and when he's done he will share with you."

Nina: "Joey's sharing! Joey's sharing, Joey's sharing!"

Finally, tired from explaining herself, Nina throws herself down on the ground and has a 15-minute tantrum. It took my husband and I several days to realize that Nina was trying to say, 'Joey is not sharing, and Joey has something that I want.'

So, a mind meld to read Joey and Isaiah's minds would be great. But with my daughter, I'd rather do a Freaky Friday body switch and become Nina for a week. I would learn about her sensory problems; when she's feeling pain; what she is getting when she is stimming on the ground with her favorite toy. I know that stimming helps autistic children self-regulate when they are in a challenging situation. But I want to learn what these challenging situations actually are, and how basic things to me, whatever they may be, are never basic and simple in Nina's mind or in her everyday life.

Children diagnosed with PDD-NOS suffer from delays in social interaction, communication, repetitive behavior and language with particular games and routines. When Nina's routines are changed, she doesn't understand why and reacts by crying and screaming. According to Professor Saxe, our brains have a region known as the right temporo-parietal junction (rTPJ) that helps us think about other people's intentions, thoughts and beliefs. But does that change for a child who is on the spectrum, and who's thinking and behavioral patterns are different and drastically affected by the slightest change in routine?

The other night, feeling defeated and exhausted after a series of unexplained tantrums and tears from Nina, I said to my husband, "I don't know if I'll ever understand Nina, and that makes me sad."

Not surprisingly, he was a little taken aback by my comment. "Ever is a pretty long time," he said. "There's a reason why she's having tantrums. Something is bothering her, we just don't fully understand what it is."

I know that using some make-believe body switch trick to be my daughter for a week isn't possible. But my desire to truly live in Nina's tiny shoes for an extended period of time so I can feel what she feels is very real. As a parent, the closet I've come to doing this is by working with Nina and my husband and her wonderful therapists to help me understand Nina's wants and dislikes a little bit more each day.

Using a mind meld on my children is a daydream that stems from my desire to prevent their frustration and tears from happening in the first place. But such a fantasy would take a lot of the fun out of parenting. If I knew everything my children were thinking, I'd miss out on those beautiful moments when all of my children (spectrum and not), surprise me with their keen insight. The moments when my children, especially Nina, see the world differently open my eyes to a new way of thinking. They remind me that multiple perspectives, even diverse activity levels of rTPJ, are what make the human experience, the human consciousness dynamic.

Having my mind melded to my children's would be boring. At least that's what the part of my brain that makes moral judgments is telling me. I think.