Yesterday Emma wrote, “Why is my mind autistic and yours is not?”
That sentence took over two minutes for her to write. I say this as a factual statement so that people reading this have a better understanding of the enormous effort and energy it takes for my daughter to communicate. If it took everyone a few minutes to communicate a single sentence, perhaps we would be more thoughtful about what we said and wrote. Two minutes. With someone like Soma, Emma is able to write much more quickly, but I am fairly new to this (I’ve been working with Emma on an alphabet board on a daily basis since the end of September) and so with me, it takes longer. With someone else it may take even longer still, or she may not be able to write more than a single word. But the more salient point is, that sentence is gold, and worth every second it takes for her to point to one letter at a time to create words and then whole sentences.
Until we found this way of communicating, we were left guessing about Emma’s likes and dislikes, what interested her, what she was curious about. And while there were a great many things we knew or believed we knew without her telling us, there was also a great deal more that we did not know or understand. For example, I was astonished to learn last week that Emma was curious about Africa and wanted to know why so many of it’s inhabitants are poor. Later I asked her if she’d like me to read about an African photojournalist, Echwalu, whom I love and whose blog I follow, Echwalu Photography . She said she was interested. We have since begun subscribing to National Geographic and I am now reading articles from the New York Times to her.
“Why is my mind autistic and yours is not?”
So I did my best to explain that no one actually knows the answer to that question. I explained that most people believe genetics plays a role and that though I am not autistic, I do share a great many “autistic-like” traits. I went on to explain that there is more about autism that is unknown than there is known and then our session time was up. Emma went to listen to music while I thought more about her question, and resolved to read to her the Markram’s, Intense World Theory. I thought about how our brains differ, but also how much they are alike.
I thought about how relatively easy it is for me to communicate and how I take most of my communication for granted. In fact there is so much I take for granted. I thought about how easy some things are for Emma, things that I am not able to do, like singing on key, being able to remember a melody and imitate it note for note. Her ability to absorb knowledge without having been taught, like multiplication, division, vocabulary words, to name just a few.
This idea that Autism is a massive list of deficits needs to change. The truth is we, non Autistics know almost nothing about Autism and what it means to be Autistic. In fact, the human brain is constantly astonishing neuroscientists. To say we understand or know without a doubt what any one of us is able to do is to underestimate, not just ourselves, but everyone else too.