It’s All Made Up
I walked into the cafeteria of a local elementary school. The room was filled with mostly woman in their mid 30’s to early 50’s but among the teachers, administrators and a few parents there were some men and teen-aged children, many of whom demonstrated Autistic tendencies.
James Williams stood on the corner of the stage. He swayed slightly and his hands waved, almost imperceptibly at his side. He was dressed in a well-worn rugby shirt, buttoned up completely, and khakis. An equally well-worn pair of Uggs peaked out from beneath the hem of his pants.
The principal and vice-principal of the school introduced him. They explained that with the nasty weather up north, there had been a question as to whether or not James would make it but he had decided to take a Greyhound and here he was. As he began to speak, the cadence of his speech and word selection immediately reminded me of my son.
“Greyhound,” he began, “is a way of traveling.”
I smiled, there is a special kind of joy when you see someone with the kinds of struggles associated with Autism, overcoming in such a bold way.
“Everyone is impacted by the society they live in, even Autistics, and no social skill is universal. An Autistic child who stays alone in his room is not seen as autistic. It is only when he comes out that the symptoms of Autism appear,” observed James.
James asserts that social skills are defined by our country, our state, region, county and even city. For example, one of the biggest struggles for Autistic people in India is the way that life is celebrated in India. The loud shouting, dancing, clanging of cymbals and clapping is overwhelming to the sensory systems of Autistics but their dislike of this social ritual is seen as anti-social and as such is seen as a symptom of their Autism.
Our definition of Autism is formed by listing symptoms that are essentially the ways that these children break with our expectations. Another example James gave pertained to the idea of personal space. Many in the US consider personal space to be a universal social skill, however, in many parts of the world, our idea of personal space is strange. Many cultures consider it acceptable, even preferable to stand much closer than we in the US would consider comfortable. Even in this area, our ideas of social norms and what constitutes a violation of them is subject to our specific society. James introduced the idea that symptoms of Autism don’t mean much by themselves. The symptoms only impact Autistics based on how they intersect with social expectations.
James went on to reference Brenda Smith-Myles’s book, The Hidden Curriculum, Practical Solutions for Understanding Unstated Rules in Social Situations. James went on to explain that there is a hidden curriculum we all learn from our society. This curriculum is made up of our shared beliefs, values and opinions. The struggle for the Autistic is to know this curriculum exists and to learn it.
Why don’t Austics know?
James has a theory as to why Autistics don’t learn the hidden curriculum. Our education in social protocol is based on reciprocal comfort. When someone does something socially unacceptable, it makes us feel uncomfortable. Since most Neurotypicals (NT) have a mutual agreement not to make each other uncomfortable, when an NT sees someone doing something that makes them uncomfortable, they are in turn “taught” that the offending activity is taboo. For example, when we see someone picking their nose, it makes us uncomfortable, therefore we are taught that we should not pick our own nose. However, with the child on the spectrum, they do not have the shared emotional response to taboo activities. Since it does not make the Autistic child uncomfortable to see someone picking their nose, they do not understand that picking their own nose makes others uncomfortable and therefore do not learn the rule about that particular subject.
This links into another aspect of how the Autistic child struggles, differing perceptions. As all of us who work with or raise children on the spectrum know, they perceive the world very differently than Neurotypicals.
James again referenced Brenda Smith-Myles, sharing a study done on entering middle school students. They asked a group of these students what they were most looking forward to at middle school. The Neurotypical students said they were looking forward to having lockers, different teachers for their different classes, lunch period and being in a bigger school. They then asked them what they were nervous about. The Neurotypical students remarked that they were nervous about how the older students would act and the increased difficulty of the curriculum. However, when they asked children on the spectrum the same set of questions, they found that while there was nothing the Autistic children were looking forward to in the new year, the things they were nervous about were having lockers, different teachers for each class, lunch period and being in a bigger school. With such a vastly different perspective on the world, it is not strange that Autistic children struggle to understand what Neurotypical children pickup on immediately.
In someways, James’ himself was the perfect example of what he was saying. My expectation was to see a person with Autism. As such, his clothing – sensory friendly, his hand motions, speech cadence and stance made sense. The fact that he was speaking in public was impressive. However, if I had been expecting a Neurotypical Autism expert, I may have been surprised to hear him speak the way he spoke or see him move the way he moved. They way in which James exceeded my expectations was part of what made his lecture impactful.
Next time: Developmental Milestone, Are They Cultural? and Judging Behaviors (James Williams Part II)