This is a guest-posting by one of our readers. Claudia Mazzucco has had an almost thirty year golfing career as writer, researcher, historian, editor and teacher of the history of golf. She was born in Santiago del Estero, Argentina, and was diagnosed with autism in the summer of 2001 in London. Claudia is an advocate of the notion that it is worth knowing the differences between the symptoms of possible autism and behaviors that look like autism but are not. At the root of a spectrum that keeps getting bigger and bigger, she concluded, is the tendency in American society to categorize an increasing array for normal childhood reactions to stressful life situations as proof positive of a neurological disorder. She supports very strongly scientific research, both for curing autism and helping individuals with Asperger to find acceptance and integration.
What must exist for a given person to have autism is a pervasive, abnormal disruption within the large network of cells in the cerebral cortex. It is largely down to genes. That always meant not only an unexplained delay in language development but also learning difficulty, resulting in a fragmented, monotonous (robotic like) language which the best therapies might provide no progress. I have confidence that abstract thinking and a conceptual-intention system are constructed in autism with the utmost patience, perseverance, tribulation, and only with appropriate therapy and constant repetition. This breakdown of neural induction and early neuronal maturation could lead to mental retardation, absence of intellectual thinking, incapability to solve problems, lack of emotional and social intelligence. To Doctor Hans Asperger’s amazement, he had seen that individuals, who are intellectually intact but present severe and characteristic difficulties of social integration, “can almost always achieve professional success, usually in highly specialized academic professions, often in very high positions, with a preference for abstract content.”
The way we manage autism could produce social difficulty, but not necessarily. Now if we’re going to talk about difficulties with social communication, I will confess that I don’t know how to establish communication in a social situation, and it has never bothered me. I usually try to surround myself by adults who are able to demonstrate mastery of the skills that I lack. I believe there must be a strong bond, forged through history and culture for any person to feel comfortable in a social situation. I do also feel that in the modern world and because of migration, we could find three or four different cultures living in the same neighborhood but isolated from each other. Thus it is very likely that a social situation between two people from diverse cultures will always be awkward because they do not have mutual interest, or common ground to initiate a conversation.
I have also understood that to read body language is bound up, to a great extent with family ties among two or more people. I enjoyed, for example, during nine years the TV series Everybody Loves Raymond. The Barone family was odd. The wife was fed-up. The parents were overbearing. The older brother had a lifelong, resentful, jealousy. It was amazing that Ray could function at all. I never got a clue about what Marie Barone (Ray’s mother) and Debra (Ray’s wife) meant with their body language in the series but I was capable of following the script and, eventually, in the interrelated sequences of episodes, all the pieces of their body language fall into place. Body language is impossible to understand if analyzed in abstract.
The difference is that autism stands for the total and ultimate unawareness of the external world. For people with classic autism (Kanner’s autism), other people do not exist. People in the spectrum of Asperger are all-too-aware of the presence of others in their surroundings and, it seems to me, are overcome by feelings of “I-do-not-know-what-I-am-doing-here.” Naturally, the lack of sense of belonging produces the wrong perception.
Awareness Demonstrates Difference
Of particular interest is John Elder Robinson’s second book, Be Different. When John watched Billy, The Kid, a documentary about an undiagnosed Aspergian 16-year-old in a small town high school in Maine, he recognized “his look” and identified with him in an instant. Wrote John: “In one scene, Billy moves warily among his classmates. As he walks the halls, you see his eyes dart from side to side, constantly, looking for threats. Like a lone deer in a forest filled with wolves. That was me in tenth grade, at Amherst High. Seeing his face, I experienced all the worry and anxiety of that time in my life. I knew exactly how he felt: alone, scared. Surely no one around him understood him; not even sure if he understood himself.”
The frequency, scope, and painfulness of these experiences (that appear in almost every report of Asperger’s Syndrome) are quite astonishing. They include social challenges, bullying, ostracism and segregation, psychological pain, a life of complete isolation, struggle with depression and extreme anxiety, fatigue (from being unable to look people in the eyes, for instance), and general suffering. These are trials caused by the forces of socialization and by human beings, not by genes, biology or the neurology of the brain. Some Aspergians talk about prenatal tests for autism as the eugenic elimination, in the sense that if it is developed and used one day people like “them” might cease to exist. There is a real sense of terror (toward other human beings in general) throughout their lives. It is one of the reasons I want to help to trace these chains of “fear” down to their roots.
Generally speaking, repetitiveness – lining up trains in identical order – the need for sameness, self-absorption – especially while studying objects – and solitary play are expectable behavior for male toddlers. “Research shows that boys are far more likely to engage in solitary play than girls at this age,” Dr. Enrico Gnaulati explains. “Many little boys are satisfied playing alone or quietly alongside someone else, lining up toy trains, stacking blocks, or engaging in a range of sensorimotor play activities.” It is not until about age four or five that boys are involved in associative play to the same extent as girls. When a boy goes through his childhood years without engaging in interactive games, it is a distinctive possibility that he will not learn how to get along well with others, his empathy will be underdeveloped, and he will be incapable of elaborating upon his own feeling. Certainly one consequence of it was this character Billy, the Kid that Robinson talks about. Why this happens is not certainly due to genetic but psychological reasons. In other words, personality’s traits (like introversion), and family circumstances (like a parents’ divorce, cancer, a death in the family), could generate the kinds of existential crisis that makes kids like Billy, and those who strongly identify with him, asks himself Who Am I? Who Are My Friends? Do I Belong?
I was never shaken or alarmed, either by the presence of others or by thought and by feelings to the effect that others around me did not understand me. Why should they? When I went to Elementary and High School in Argentina, I never managed to become a member of my classroom. If you ask me, whom do I meet? No one comes to mind. I had no friends. The other children were not there.
Articulating While You’re Perceiving
As we have seen, in Be Different, John remembers this episode all in one piece. He did stress the depth of his feelings of being apart from the group. There is no problem in connectivity in his brain. So then, feelings, spatial awareness, the sense of self, mirroring himself in Billy’s character (his neuro-mirrors are well adjusted), are joined together to describe a defining moment in his life.
A person with classic autism has no faculty for recalling memories in an orderly – sequential – fashion. Japanese author Naoki Higashida (who is severe autistic) noted in The Reason I Jump, “Memories are not stored in a clear order. Our memory isn’t like a number-scale from which you pick out the recollection you are after: it’s more like a jigsaw puzzle, where if even just one piece is misinserted, the entire puzzle becomes impossible to complete. What’s more, a single piece that doesn’t belong there can mess up all the surrounding memories as well.”
Claudia Mazzucco, March 19, 2015