In honor of April 1st- Light it Up Blue for Autism Awareness Day!
Hindsight is 20/20: Isn’t that Cute?… But Something’s Not Quite Right
Autism is sneaky. I can look back now and say “Ahhhh- so that was the autism coming out.” But at the time… I have a background in gifted education, and that means that I tend to look at kids from a strengths-based perspective. I see things that could be the germ of a talent or activities that show promise of great thinking. Even with a special education background, I tend not to look at things from a deficit view. One of the most significant challenges of working with two different sets of professionals is that one might see a behavior as a characteristic of a deficit, while the other sees the behavior as evidence of a strength.
Memory- As an infant, Elizabeth would get the cutest expression on her face when she was startled. Her eyes would get round, her mouth open, and arms would fly out at the slightest change in her environment We were intrigued at this and said, “Wow- what an alert child we have!” and I would spend some time soothing her. It’s a “startle” reflex that infants have and adults still have to some degree. It’s more than surprise- it’s an instinct that infants use to let themselves know that something has changed and it activates their “fight or flight” adrenaline rush. Heart rates accelerate, pupils dilate, and the body tenses up, ready for action. All infants have it, but infants who later develop autism often have a very sensitive startle reaction. In other words, they don’t “normalize” very quickly- the world is a very nerve-wracking place that causes high anxiety.
Memory- My nine-month-old daughter banging on the dryer and then listening to the differences as she banged on the washing machine. Repeat. Repeat. For about 30 minutes. Isn’t that cute?
We were convinced she would either be a drummer or a repairwoman. She spent an hour at a time listening to the different sounds of the bangs. She still has this skill of distinguishing little details and analyzing how things are alike and different. Hidden Picture games are no fun for her because she just points right at them. I had to explain to her once that this is hard for most of us and its fun for us because it’s a challenge. She just shrugged. Now, of course, I know that it’s the autism combined with a eye for detail, but at the time, we were very impressed with her ability to concentrate and discriminate.
Memory- Elizabeth insisted very definitely on being held facing outwards. She would cry and strain her head around trying to see around me when I held her facing me. So, I happily turned her around so that her back was to me and she was free to observe the world around her. I was pleased to have such a curious and exploratory child. Because of an old back injury, I couldn’t carry her in one of those Baby front packs, so I ended up with the baby on my hip, watching the world from a slightly tipped angle at times. However, putting her down was a real challenge.
Elizabeth HATED tummy time- not just resisted it, but HATED it. I was a good mommy of the early 2000s who laid her child down on her back to avoid Sudden Infant Death Syndrome (SIDS). We were deeply grateful that we lived in Florida so that the whole issue of blankets was not a concern. She would go into her little onesies, lie down on the big crib mattress and play contentedly, often soothed by the mobile. But get her up and put her down on the floor face down and she would turn into this monster of a child who would shriek uncontrollably for hours. I at first thought that she would cry herself to sleep, but no such luck. For the first five months of her life, Elizabeth experienced this Jekyll-and-Hyde transformation every time we turned her over onto her stomach. Tummy Time became Torture Time- for everyone. I tried the nifty mat with the colors and activities. I tried no mat. I tried a soft texture. I tried the cold tile floor. In all cases, we had unrelenting crying.
And when she learned to roll herself over, around 5 months old, we would put her on her little mat and she would immediately roll herself over onto her back to play with her toes. All of the baby books said not to worry about this- that the heads will round out when they can hold their heads up. But our baby spent so much time on her back seeing out that her actual head shape was altered.
Needless to say, Elizabeth is now eight years old and still has a flat spot on the back of her head. When I’m rubbing her head, I am always reminded of the Western Native American babies who were carried on flat boards, or “papoose boards” and had flat heads. Flat heads used to be a significant cultural trait encouraged among some Native American populations in the West, and the white men, and other tribes, were called “round heads” when the cultures collided. There’s even a Flathead Reservation and a Flathead River in Montana named after this practice. However, I know that for us, her flat head is a symptom and symbol of her autism- hidden, but still faintly perceptible.