Autism or Loss of Identity?

Claudia Mazzucco is a journalist and author from Argentina. She is acknowledged as having made a decisive contribution to the History of Golf in Argentina by her researching on its historical origins and the life of Argentina’s golf champion, Roberto De Vicenzo. Since 1989, she teaches History of Golf at the PGA of Argentina. She was born in La Banda, Santiago del Estero. Her diagnosis of autism was confirmed twice: in London (2001) and the United States (2017). She lives in Hartford, Connecticut.

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Why don’t Aspies like to be in a social situation? Why, at the start of adolescence, do they each not develop a way of copying when the brain is overloaded by distressing stimuli? If someone conducted a survey about people with Asperger’s Syndrome, they would find a remarkably common pattern that includes social challenges, bullying, ostracism and segregation, psychological pain, meltdowns – which commonly include crying, screaming, shouting, lashing out, kicking, breaking things- and a life of complete isolation. They spend nights lying awake worrying about not having friends. Finally, and most problematically, they struggle with depression and extreme anxiety, fatigue – from being unable to look people in the eyes, for instance – and general suffering.

My queries are not yet answered.

In a Blog written by Khali Raymond (The Art of Autism, November 10, 2017) he outlined what I would call a story of harm by a diagnosis of Asperger’s. Khali said,

“Living with Asperger’s is not an easy feat. It never is. Imagine yourself in a room full of people. All of those people are laughing and mingling. Meanwhile, you aren’t. You’re sitting there in the corner all alone, watching everyone make nice with each other. Nobody even acknowledges that you’re there. You just sit there, crushed from the inside. You have trouble expressing yourself because you don’t know how to. Your fear of being rejected eats you up. Your fear or feeling inadequate to others eats you up. As you’re living with this disorder, those whom you’re around can’t understand your pain. You’re constantly feeling glum and angry. You feel as if this condition drags you into an abyss … an abyss that leads you to a point of no return.”

“I have this feeling. Growing up, I could never fit in with others. As a kid, I couldn’t look an adult in the eye. I never had the capacity to. There was just something about looking at another person that made me feel very uncomfortable. In social situations, my heart would pound very fast. I would tend to get nervous. I would always be the one that got left out because I couldn’t relate to the other children.”

There is a strong mutual dependency between the dire lack of a common narrative and of recognition that a global world implies there will be a diversity of views, which need to be resolved through respectful dialogue. The key issue is, of course, how to create common assumptions and avoid division. In 1963, President John F. Kennedy, in a speech at the American University, in Washington, D.C., said “So, let us not be blind to our differences, but let us also direct attention to our common interests and to the means by which those differences can be resolved. And if we cannot end now our differences, at least we can help make the world safe for diversity. For, in the final analysis, our most basic common link is that we all inhabit this small planet. We all breathe the same air. We all cherish our children’s future. And we are all mortal.”

The second of nine children, John Fitzgerald Kennedy come into the world on the afternoon of May 29, 1917. His father, Joseph Patrick Kennedy, had acquired a multimillion-dollar fortune as a skilled player of the stock market. His mother, Rose, was the daughter of John Francis Fitzgerald, the Boston major popularly known as Honey Fitz. He was named in honor of his irrepressible grandfather Francis Fitzgerald. In the summer of 1906, Joe feel in love with Rose and they were married in a ceremony in William Cardinal O’Connell’s private chapel in October 1914. In those years, the divide between groups was one of those elementary facts of life not worth puzzling about. The social barriers between Protestants and Catholics were the natural order of things, and no sense of discrimination need attach to wide gaps between Boston’s upper class and its Irish Catholics. An instinctive mistrust and resentment caused them to have as little as possible to do with each other.

Born in 1901, Christopher Stephen Andrews is an Irish political activist and public servant. He was aware from childhood that “there were two separate and immiscible kinds of citizens: the Catholics, of whom I was one, and the Protestants, but we knew that they were there – a hostile element in the community, vaguely menacing to us … they were very respectable … their children never mixed with the village children.”

A globalized world can be likened to a kaleidoscope. If you turn a kaleidoscope now this way and now that way you will see it differently as various forms emerge. Yet it is always one and the same kaleidoscope. So with the globalized world, if you view it now one way and now another you will see it differently. Yet it is always one and the same world. There are “identical traits that humans share: a voice, a face, fear, hope, the capacity to trust,” as Abraham Heschel, the great rabbi, philosopher, and professor at the Jewish Theological Seminary in New York, wrote in 1965.

The greatest challenge in finding a viable framework for a global village community will be developing new capabilities to cope with the pace of change. We have access to more information than any humans who have inhibited the earth at any time of history. But we are simply overwhelmed by so much information. We are unable to process it. We belong to one world, but we do not translate our experience and needs into a common narrative; to the contrary, what is distinctive about globalization is that it has created a world of division and disenchantment. This seems the natural and logical state of things.

In Bill Clinton & James Patterson’s novel, The President is Missing, said President Jonathan L. Duncan:

“Our democracy cannot survive its current downward drift into tribalism, extremism, and setting resentment. Today it’s “us versus them” in America. Politics is little more than blood sport. As a result, our willingness to believe the worst about every one outside our own bubble is growing, and our ability to solve problems and seize opportunities is shrinking.”

What a terribly divided world desperately needs is common ground – an agreed-upon set of facts to argue about; a certain kind of new willingness to engage in reasoned dialogue with views with which one disagrees. Twitter is a contest with much name-calling and ugly innuendoes about the other. Some solid common grounds are indispensable, so people can expect their ideas to be argued in this way rather than that, to be considered as explanations for that set of facts, to be exempt from specific accusations, and to pursue a wholeness of knowledge widely understood. If we are not connected, if we are not in some way extended beyond our self-awareness, we are going to have a hard time developing our communication and social skills. Staying connected enables us to know, or feel, what life is all about. Moving beyond our own limited, individual sense of self – in both our awareness and in our actions – is essential to the realization that we are part of a Bigger Picture.

Is it autism or is it loss of identity in the global village? All you feel and do that bears in your social life, is a difficult and challenging work because the ability to make friends is not inborn but a learning skill. To be human is to relate, and there is profound power in the relationship we make if we allow them to transform us. Friendship is not based upon electrical impulses and neuron activity. It is not a deliberate choice at age four. For people with Asperger Disorder, when it comes to relationships, everything is upsetting.

The Canadian philosopher Marshall McLuhan often repeated the aphorism that “we don’t know who discovered water, but it was not the fish.” What he meant was that we are so close to our own reality, that we actually have least perspective on it. “Only when it is hooked,” said Rabbi Steve Leder (1), “thrashing in a net, gill gasping and flailing from breath, only then a fish discovered water.” Growing up, John Elder Robinson, who wrote a popular memoir of his life with Asperger’s (Look Me in The Eye, 2008), felt alienated in profound ways. “Looking back on my childhood, I think the ages of four to seven were critical for my social development. That was when I cried and hurt because I could not make friends.”

In an ASD diagnosis, there are other issues more worthy of consideration. The world is a nexus of meaningful relations pre-given with all the things, events and actions that happen in a community. Things, events and acts are present against the background of a unity of relations, which only appears indirectly in and through these things, events and acts. In the absent of a pre-given world, it would not be possible for someone to make friends, because friendship in a primordial sense is not a given. When a diagnosis interprets the inability of making friends as a feature of autism, it could lead parents not to encourage children to socialize. This belief could have unintended consequences. The world would appear to these children as limited, confusing disconnected things of meaningless relations, and in the long run, they will find only despair, rage, loneliness, and hatred. Ensure that a child will learn how to move throughout the social world as easily as possible. Find a sport your child can play and be in contact with others. Find a church where beautiful stories of the Bible are told.

We are social creatures known for our warmth and empathy toward our families, friends and communities. For most of human history, people framed their social skills among others they had known most of their lives. Our nature was formed in small societies (village communities) of a few score of people; in a traditional & patriarchal human society where it was essential that one belonged to a specific family, and this was what constituted the key element of one’s self-identity.

“In the past, individuality was not such an important thing,” said Jon Stewart, “it was suppressed or actively discouraged. People were brought up to believe that the most important thing was not themselves as individuals but rather their relations to larger groups.”(2)

An enormously powerful feature is built-in at the baby factory: the habit of forming tribal bonds, of having faith in those we love and distrust of those we dislike. “Before you ever learn about abstract ethics at school, you know in your bones that you’d trust your Uncle George with your life,” said Mark P. Shea. “That the Hatfields are dirty lying cheats; that decent people don’t trust as far they can throw them; that Mama has never lied to you and that Father Malone may be a gruff old coot but he’s a saint and the salt of the earth. We learn what we love and hate in very large measure from the fact that people we love find certain things lovable and other things loathsome.” (3)

The advantage of developing this habit could prevent autism-like symptoms. Scholars are just beginning to catch on to how important groups are to our needs of belonging. Greg Lukianoff & Jonathan Haidt suggest, “human beings are an “ultra social” species. Like bees, humans are able to work together in large groups, with a clear division of labor. Humans love teams, team sports, synchronized movements, and anything else that gives us the feeling of “one of all, and all for one.” The dynamics of small groups do not explain only how ordinary people can be prompted to do any number of extraordinary things. They explain how the community integrates people with autism in their towns.

An adolescence marked by a lack of friends is a symptom of Asperger’s. I think, however, that concerns about not to belong is a set of mind, a choice a person would make. Look at the world for yourself, and learn about groups of people or individuals would have the same feeling and not being labeled as “autistics.” Later, in his second book (Be Different, My Adventures with Asperger’s and My Advice for Fellow Aspergians, Misfits, Families, and Teachers, 2012) he despaired at a documentary about an undiagnosed Aspergian 16-year-old in a small town high school in Maine (Billy, The Kid). He recognized “his look” and identified with him in an instant. John writes:

“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.”

Careful consideration of this story makes clear that John is evoking the depth of his feelings of being apart from the group as is the case with Khali; but there is no problem of 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. John acted as if his experience was unique but this feeling is nothing unusual. The Aspie is not in a different position from other people who are trying to find a sense of belong in the global village.

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They all provide ambiguous answers about their lives with Asperger’s Syndrome, now autism. “I have autism or I am autistic. That means that everything is difficult.” What exactly is the “everything”? A sense of not belonging why had not been specified. They are all extremely sensitive and defensive, and inflexible. Fast to anger when they perceive an offensive comment directed toward them. For others – like me – is just an honest question about what motivated them to embrace the diagnosis, or what elaborated argument would they make to support the belief that certain celebrities of the past were Aspies. They remain unable to say something coherent about why they believe someone who is a computer software engineer, a famous painter, a Nobel Prize winner, or works in Silicon Valley need to be diagnosed with Asperger’s Syndrome? They think I am calling them liars for believing – without evidence – they perceive the world different from everybody else, which is a product of certain – unspecified – difference in the brain. What is an unusual thought patterns? I asked purely out of curiosity. Truth is, deep down, I guess, they are probably mad at life itself. The big wound. I figured it would take a smarter person than me to decode them all. To my knowledge, an Aspie has the same brain synapses than any other unique person, which is all kind of different synaptic connections. They do not need “to be educated to think and perceive the world like everybody else,” because … everyone – Aspie or not – perceive and think differently. To my knowledge, what they believe is influence by the education they received: there is a conviction in certain societies that must be something terribly wrong in exceptional people. The syndrome kept them miserable and fearful of social interaction for … ever. I fist asked why. The flat voice, if it is cause of concern, can be gradually modulated to socially acceptable standards; the aversion to eye contact, if it makes them highly anxious, can be regulated. Practice improves poor communication skills. An obsession with a single subject matter can be overcome by expanding their horizons to new subjects of interest.

References

1. Steve Leder, in the Introduction to More Beautiful Than Before, How Suffering Transforms us, Hay House, Inc., California, 2017, p. XIV.

2. Jon Stewart in Soren Kierkegaard, Subjectivity, Irony & The Crisis of Modernity, p. 87.

3. Mark P. Shea in Arguing Well by Avoiding the Genetic Fallacy; published by The Catholic World Report, June 5, 2013.

4 responses to “Autism or Loss of Identity?

  1. I Agree was a mistake create an “autism spectrum” but also I think Asperger Syndrome needs more scientific definition to avoid overdiagnosis. I ‘ve read the attached image in “Asperger Syndrome And Classic Autism” and I think that list do not show the underlying causes. In my opinion, lists of diagnosis criteria should be something like the following:

    -Alexithymia ( extremely marked during childhood -as researching are showing- and not completely equal to “pure” alexithymia): explain poor emotion recognition (self and others) and even lack of symbolic play.

    -Dyspraxia, or Non-verbal learning disability features: may explain motor clumsiness and IQ profiles suggesting of “right hemisphere dysfunction” (the most common between people with a diagnosis of Asperger’s)

    -Atypical obsessive compulsive disorders (as real as typical OCD, but with a distinct tests profile and therefore “unclassifiable” for professionals)

    -Very poor attention switching (compared to others) or tendency to addictions: seems to be behind repetitive behaviours or restricted interests

    -Sleep disorders (EEGs usually are normals, but polisomnographys in many cases are not)

    -Possible autoinmune disorders, or gluten/casein sensitivity

    -A history of striking sensory abnormalities or enough strong to cause some kind of interference (e.g: feeding problems if the sensory abnormalitie involve taste, etc)

    -(in some cases): hyposexuality, and even gender dysphoria

    -Etc

    I don’t think Asperger is a fantasy category created to label traumatized or lonely people: people with characteristics above mentioned very often receive wrong diagnosis of schizophrenia spectrum disorders.

    Liked by 1 person

    • To Anonymous:

      You have written:

      “I don’t think Asperger is a fantasy category created to label traumatized or lonely people: people with characteristics above mentioned very often receive wrong diagnosis of schizophrenia spectrum disorders.”

      Your interpretation. Not mine. A person is not diagnosed with Asperger’s out of his or her own loneliness. Or because a traumatic event in their lives whatever it would be.

      In either case, poor emotion recognition might be explained by: (1) self-centeredness, which leads to ultimate unawareness of the other, which is part of the human condition, (2) that the other person does not show their emotions in an explicit way. Education seems to be the only key that can make each person aware of the other.

      Question: what exactly is symbolic play? Not a rhetorical question. I really want an answer.

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      • Symbolic play is the ability to use toys as representation of real objects or persons. Usually children “feed the doll” or imagine the car in a race since an early age.

        Children who receive a diagnosis of “ASD” not only tends to play alone (and do not make friends), also have a history of break the toys or ignore completely or limited to make collections or transport them everywhere, and their symbolic play (if any) is delayed and never is very imaginative (the dolls do not interact; or play is limited to repeat what they seen; If they play with another person, they can transform the play in a new rigid repetitive routine, etc)

        I doubt that the cause of poor “mind reading” is self centeredness because schizoids are even more uninterested in people and they have better perspective-taking, but anyway social problems should not be overlooked: children with Asperger’s could not realize that other people act guided by thoughts and feelings if they were not explicitly taught.

        Asperger’s leads to having a poor and no reciprocal concept of friendship and in the teen age exposes to being bullied by classmates due to the inability to see aggressiveness behind jibes and sarcastic comments and the perception of the bullies as “friendly”

        A judge of minors said he learned to recognized asperger cases in adolescents because they often are used as scapegoats and involuntary involved in illegal acts committed by others.

        I agree education is needed, indeed many persons with asperger’s finally learn about another people thoughts, but this learning is rigid an often misinterpreted as “paranoia”.

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  2. Children are labeled with Asperger’s syndrome when they don’t really “have any delays in language per se, but do have difficulties in social interaction,” said Lynn Kern Koegel & Claire La Zebnik . “These children will also tend to have special interests and problems making conversation. We work with one little boy who only wants to talk about lavatories in airplanes. Another only wants to talk about Rolex watches. Kid with Asperger’s syndrome can become experts on certain topics, but these topics may be of little or no interest to others.” How do we encourage such children to expand their mind – not just in knowledge but in experimentation, in inquisitiveness, in trying out new concepts and strategies? By education, and if you are going to have restricted interests, enjoy having restricted interests, rather than suffering stress or isolation, enjoy “the Bubble” the experience is affording you.

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