“Uniquely Human”

If you are the parent of a child with cortical visual impairment (CVI), why would you read a book about children with autism? Children with CVI and children with autism  are different, their brains are different, but they share some behaviors. So much so that, when educators or therapists or providers see those behaviors in your child, the tendency is to see autism, and not to see CVI. Those shared behaviors were the motivation for reading Uniquely Human: A Different Way of Seeing Autism.

The first part of the book was like reading about my son with CVI. The body movements, the repetition, lining up toys, talking about the same topics, the sensory processing differences. Mostly when I think of autism, it is with a kind of envy – envy that everybody has heard of it, which is not to say that everybody can tell you what it is. Envy that educators are familiar with approaches that help students with autism. Envy that there are a multitude of autism support groups and advocacy organizations. Envy that there is so much funding, research, and study of autism. Envy that there are awareness campaigns and billboards, for autism.

It was behavior that made me want to know more. Our behaviors include my son waving his arms when he is excited, lots of body movement (or physically pushing away) when he lacks visual access or is visually fatigued, lining up his toys while playing (because lining them up is predictable). Talking about public bathrooms and dogs and cheese, all of which are challenging experiences for him. He needs a week’s notice before he can be expected to wear a collar shirt or jeans in early fall or pajamas to class. He is in elementary school now but pulling a shirt over his head is still hard. His list of non preferred foods is long and growing. He refuses to go to new places (novelty), unless mom can convince him otherwise by using the super power of comparative language (Roman). He covers his ears for barking dogs and hand dryers and music and the vacuum. The list goes on and on and on and some days the sensory processing issues feel more overwhelming than the challenge of the diagnosis of cortical visual impairment.

Reading about the behaviors of autism, described from the perspective of Barry Prizant, it was clear to see that our CVI behaviors, though they appear alike, are different. The book takes a deeper look at “behavior,” the word itself has come to have only negative connotations, especially when delivered by educators or school administrators. The book looks deeply at behavior, while advocating for acceptance and valuing neurodiversity, a different way of being in the world.

For our children with CVI, or at least for my child with CVI, the book helps me see his behavior differently too. It helps me see the purpose in his behavior – different from that of a child with autism – to see behaviors such as talking at length about bathrooms, as helpful, a way of coping, working it out.

The purpose of writing about the book at all was to share this quote, which has been on my mind for months, though I only read it for the first time a few days ago:

“The opposite of anxiety is not calm, but trust.”

The quote is by a person with Asperger’s, which itself has become a debatable diagnosis, and now falls under the umbrella of autism. The quote makes absolute sense and describes our school year in an utterly new and unfamiliar environment for my son. Home, school, neighborhood, everything is different. In fact, the quote has been the story of our lives since moving last summer.

The disability of CVI and the lack of visual access, not to mention the unpredictable sensory processing experience, bring a certain amount of anxiety into the lives of people with CVI, and those who care for them. The new school team comments on his attachment, at school, to certain people. “You have to use an abundance of anticipatory language with him. When you walk away from my son unexpectedly, even for a minute – you disappear. Give him the respect of anticipatory language. When you do that, you not only give him incidental information but over time, you build trust.” When you are teaching or working with or spending time with a child who has CVI, trust goes a long way. When you do it right, you become something else that Uniquely Human describes, you become a regulating presence in the life of that child.

“The opposite of anxiety is not calm, but trust.”