My daughter has long seemed to me like she has bionic senses. But unlike The $6M Man in the 1970s SciFi, all 5 of my daughter’s senses are bionic. I’ll give a few examples.
My daughter often focuses on the background soundtrack in a movie or a videogame or the squeaking “music” of the chains a playground swing. She often becomes frustrated with me when she attempts to engage me conversation about the sound that has never broken into my conscious thought. As I try to follow her conversation, my mind is searching for the sensory input she’s referring to and often after she describes it to me 2 or 3 times, I often find I CAN hear it. I hold her in awe for her ability to capture the world around us with such an attention to detail.
I have long since realized my daughter experiences our world in a manner very different from the why I experience it. I always thought this was simply because we are different people and we have different view points. But last week when the Kennedy Krieger Institute doctor told me my daughter is autistic and after reading Dr. Devon Price’s Unmasking Autism and watching YouTube videos by The Autism Dad, I’ve been trying to reconsider what I know about my daughter.
In grad school at the American University in Cairo, I learned participant observation for field work in sociology and cultural anthropology. The idea behind participant observation is to try to literally walk in the shoes of other people. For example, I did my field research at Nedy Masri, the Egyptian Rowing club on the Nile. I rowed, coached and competed with the club. I spent 4 or more hours per day living the life of a rower in Egypt, including the sublime and marvelous moment of sitting on the dock waiting for the sun to rise for practice to begin. The idea of participant observation is to try to understand people often very different from ourselves. There was one of the great thinkers I read during this period of my life who said something to the effect that he’d never met someone that he couldn’t understand at least a little and he’d never met anyone himself included that he could completely understand.
I have long realized I’m a participant observer in my daughter’s life. I’m not particularly interested in music, but it moves through her like an electric volt. When she was maybe 12 months old, I tried taking her to a drumming circle. The 1st 2 times, she jolted and cried as the door opened. We left immediately. But every 30 days, I went back and tried again and on the 3rd attempt, she didn’t cry. Her eyes were wide with wonder and she tapped on a drum. I kept going back because I had watched her interact with things at playgrounds and in toy stores.
The drum circle was in San Antonio and we moved to the National Capital Region when our daughter was 2. She started piano at Ottley’s School of Music when she was about 2 1/2. She was fascinated by her portable electric keyboard. Not just the standard instruction Ms. Ottley provided, but she also walked on it, stomped on it and played with it. Her full sized piano today, remains a toy as well as an instrument. She set herself to record a video rendition of all of the Music for Little Mozarts songs and during one of those recordings, she had an epiphone about what the word staccato means.
I simply can’t bridge the gap between the way I process music in my mind and how my daughter relates to it. It’s as if I were to try to compare myself to Phelps in swimming or Baryshnikov in dancing. I do swim and I enjoy it. I do dance and I enjoy it. I listen to music and I enjoy it. But my daughter and I occupy parallel universes when it comes to sound.
Sound isn’t the only area where we are widely different. Vee is super aware of smell and taste. My husband is as well although he doesn’t have a diagnosis of autism. For food, I’m happy with a Powerbar. But from my view both my husband and daughter are unusually picky about foods. Of course, they don’t think it’s picky at all. My husband complains that much that passes for food in the USA isn’t even edible. I will never forget soon after he arrived in the USA and we were staying with my parents in Arizona while I was preparing for Army reserve full time training, he asked me for vinegar. I rummaged in the cupboard of my mom’s kitchen and produced a bottle of white vinegar. His expressed looked shocked. “We use that for cleaning,” he responded. He stopped short of asking me if I would actually consume it.
My daughter often comments on smells and flavors that I’m completely unaware of. My husband noted that Mexican tortillas have a sour flavor. I’d never noticed. Friends have since agreed emphatically. But Bin noted that flat breads from China or India don’t have the same note of sour that is common to tortillas. It might be there, but I never noticed it. In fact, there’s a lot of this when I compare my senses to my daughters.
It seems as if she’s genuinely bionic. Nothing gets passed her senses. And once she observes something from her senses, she then processes for a long time, considering it on an intellectual level. Intellectual may seem like a strong word for a 7-year-old, but it’s not like she’s developing a string theory, she’s simply trying to put it into context with everything else she knows.
This makes me think about echolalia. Recently I was trying to make my daughter more aware of how often her electronics needed charging. I grabbed her headphones and I asked her how much power they had. She didn’t know. I asked if I could show her on her iPhone how to find out. I swiped right and showed her 2 green circles and 1 red blip. I noted that the iWatch was on minimum and the headsets had maximum power. She then repeated minimum on maximum 6 or 7 times. What it echolalia? I had the impression, she was feeling the sound of the repeated “m” sound on her lips and in the sound echoing chambers of the internal ear, nose and throat, in the sinus area. In short, it seemed like mindfulness. As if she took a break for a few moments to mindfully feel and sense and explore the physical sensations created by replicating these sounds.
So later when I wasn’t with her, I tried it myself. It does feel unusually unique. Again, the sounds of maximum and minimum have always been around, but I’ve never really thought about them. I’ve never stopped to lull over them.
Dr. Devon Price mentions a few details in her Unmasking Autism book. One of them is that autistic people need more sleep than neurotypical. Is that because my daughter’s brain is using so much energy to process so much information? Is it because she’s still processing some of that information while she’s sleeping? Do I sleep less because I’m not using my brain to process so much information? Since reading the book Why We Sleep, I’ve been religious about sleep hygiene and never wake my daughter until she wakes naturally. We keep the room dark and quiet, have a calming period before sleep, try to sleep at the same time everyday, etc.
This also makes me think about why it’s so hard to keep my daughter on a schedule. Three weeks ago, before we got the diagnosis from KKI, we opted out of public schools. I did this because my daughter had so many complaints about school – it’s too boring, the bus is too loud, the cafeteria is too loud, etc. The school also had challenges with her. In Kindergarten she called her classmates, “stupid,” and of course, she had problems constantly moving and talking and getting her writing assignments completed, etc.
After we started homeschooling, I was more flexible with her schedule. For example, I asked her to play 3 super simple piano pieces to prepare for Music Guild judge in 8 weeks. I expected this task could take about 2 minutes. My daughter was displeased with the sound of the 3rd and most complicated piece. She played it over and over and over and spent a good 2o to 30 minutes on piano that day. But in homeschooling, I’m not trying to keep 30 kids on a schedule. I’m trying to get 1 kid though 6 topics – reading, writing, math, music/art, science/physiology and social studies. So we don’t have to move like an assembly line.
But maybe the reason it’s hard for her to stay on a schedule is because she suddenly realizes something such as the fact that minimum and maximum have unique physical sensations when pronounced together. And maybe she wants to spend a few minutes exploring and contemplating those sensations and sounds.
Most importantly, I have working theory that the worst meltdowns, panic attacks and even violence my daughter previously expressed was related to masking. Maybe she was trying so hard to ignore her own natural rhythms and march Nazi-like along with the crowd that it was exhausting and degrading her energy, patience and abilities. In the last 3 weeks of homeschooling, her mood has improved and the number of stressful, combative exchanges between us has radically declined. What’s more, she tends to drive her own education. She’s fascinated by knowledge and ideas, and tends to move forward without much push from me. She does occassionally feel intimidated by new concepts and I help walk her into them. But once she grabs on, I let go and she’ follows them through using often very specific ideas of her own.
Last week, the AdaptedMind webapp introduced her to the terms acute, obtuse and right angles. She cut out a 1″ square piece of white paper and went around the living room comparing every angle to determine if the windows corners with right, acute or obtuse or the prongs holding coats on the coatrack by the door or the angles of the wall mounted document organizer. When she finished her inventory of angles in the living room, she returned to the computer and completed the math questions easily. But I can’t imagine letting kids in a classroom randomly run off script. It would be chaos.
Dr. Devon Price talks about the special interests autistic people develop. And she says it’s one of the most important things is to let the passion flow. We have long supported our daughter’s special interests like clay sculpting, drawing, painting, LEGOs, nano blocks, music and others.
The 1st day she took home her rental violin, our daughter sawed on it for 6 continuous hours. She isn’t interested in violin any longer, but she took 2 semesters of it when she was 3.
We’re still working on how to adjust our lives to better achieve an authentic and happy life, as Dr. Devon Price encourages everyone to do.
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