Learning

Note: Contains video. Watch at website.

Before we had children, my understanding of autism was driven by the information easily available back then. In my mind it meant non-verbal, repetitive motions, unemotional, uncaring. That may be true for some people on the spectrum, but I have my doubts.

Monkey is so wonderfully willing and able to share her mindset and the way her brain works. I am endlessly fascinated by it because our brains are so very different.

She’s shared two different insights with me lately that I want to note. They’ve been rolling around in my brain for weeks.

The first one is concerning the rise of Zoom and video meetings in general. She has found having online therapy to be much less stressful than in person therapy. The 2-D format is much less distracting. She doesn’t have so much sensory input coming in, and she’s able to focus on the words from her therapist, not having to try and make eye contact, interpret body language, and formulate “appropriate” verbal and non-verbal responses to the conversations. It’s felt more productive and safe for her.

I don’t care for video meetings, other than that they have been so useful to help people stay connected throughout the pandemic. I can’t get nearly enough stimulus and feedback from the conversations, and I’m not able to interpret the body language and non-verbal signals people are sending. They are exhausting because I’m trying to pull all that “missing” information through the screen.

The second insight she shared was about anxiety which is very much a part of autism for so many folks on the spectrum. She said she would “…like to be able to take a break from the anxiety and autism just for a little while to see what it’s like to live without them. I’ve never been able to do that.”

I wonder how much of the anxiety is because the world and our society hasn’t figured out how to offer appropriate options for folks on the spectrum. Even within our own home we can’t always accommodate the preferences of each of the children, but society at large is terrible at considering any non-typical needs; physical, emotional, educational, and mental. If the world generally feels hostile, no wonder anxiety is part of the daily routine.

Circling back around to that old notion that all folks on the spectrum were unemotional/unfeeling. It is actually the opposite. Monkey feels things so deeply, emotionally and physically, it can be painful for her. She told me once that prolonged eye contact hurts.

Now think about all our cultural expectations around making eye contact and what we “think” that tells us about a person.

Just on Tuesday I asked why she chose to use a fork for a food item that seemed like a “spoon food’ to me.

I was fascinated to learn it’s because the fork means less metal in her mouth for a shorter amount of time. The metal sensation is unpleasant, so a fork can shorten that unpleasantness. That’s also why it’s a mental and physical commitment for her to eat soup or stew.

My gratitude for this kiddo being able to share these insights; it is boundless. She’s able to watch and analyze how other people are living their lives, then process why certain things don’t work for her, then express the changes she needs to make to still make life work. That’s fascinating and exhausting and wonderful.

And as a parent I still have so far to go in figuring out how to support her while not pre-selecting life for her. Giving her room to grow and adapt while not assuming I know what she’d prefer.

When folks have asked me if I knew when Monkey was little that she was on the spectrum, I did not. Again, those pre-conceived notions of what autism looked like did not fit this loving, verbal, laughing, sweet funny little red-head. The one quirk that does make us smile when we remember it was her need for specific directions. When we were driving down the driveway away from the big yellow house, she would ask, “Where are we going?” She wanted to know, specifically, where, and how, are we going.

“We’re driving down to the end of the driveway, then I’ll turn left. We’ll drive about a half-mile down to 86th Ave., then I’ll turn right to drive into Altoona. ”

That’s the level of detail she wanted. She was processing and analyzing and preparing herself for whatever was to come, one step at a time.

The questions about where we’re going have changed, but the processing and analyzing and preparing have not.

So much to learn from her. I’m so thankful for this kiddo who is willing to let me grow with her.

I guess she wasn’t always so discerning about what she ate. 😆😆