Claudia Mazzucco: Living with the effects of autism

I believe that God made us to be different. And so, as I see it, this follows logically: if a person is chronically “ordinary,” there is something wrong. Something is missing.

Inspired by President Roosevelt

by Claudia Mazzucco

I love President Franklin D. Roosevelt because of how he inspired me to define myself. He became the 32nd U.S. President in 1933, and was the only president to be elected four times. Americans remember him as the president who led the country through the Great Depression and World War II. He was diagnosed with infantile paralysis – better known as polio – in 1921, at the age of 39. Although dealing with this crippling disease was difficult, he bolstered the nation’s spirits with his confidence, strength and optimism. Many, including me, believe that his personal struggles helped shape him, both as a man and as a president.

It was President Roosevelt that inspired me to make a resolution: that I will not refer to myself as “autistic” but as an adult who lives with the effects of autism. I’ve not erased all traces of autism. So I cannot forget it. President Roosevelt did not have polio throughout the rest of his life; he lived the rest of his life with the effects of polio.

In a clinical sense autism is easy to define. I’ve read Doctor Manuel Casanova, and I know that autism is a developmental disorder caused by abnormal divisions of germinal cells. But then again it is very difficult to pin down what it means. It is quite disabling when it takes hold in infancy to late childhood but, as we begin to pursue our recovery and do the transition into adulthood, an extraordinary number of us, adults with autism, essentially outgrow the diagnosis by the time we are capable of achieving independence.

A Childhood in Argentina

My grandma thought I could turn the disability on its head and make it into an advantage.

I had an overprotected childhood. I was born in Santiago del Estero, Argentina of a Catholic family. I might never have contracted autism if as a baby (8 months old) I had not – by accident – swallowed a poisonous substance. Someone said it was the residual liquid in a bottle of a medication for adults. It seems that I had drunk from more than a bottle. I got in a state of convulsion, as if I was in an earthquake during six straight hours, from midnight to 6 a.m. Thanks to Dr. Nazario I was saved. So this was the cause of my autism: chemical poisoning of the brain.

While Dr. Nazario did not know if my brain was irreparably damaged, my mother saw in literary a method of assessing intelligence. In the absence of any formal therapy or intervention, she engaged in that mighty struggle of providing me with the stimuli of the spoken word. This was very effective, and I began to develop the right brain’s functions: memorization, intense visualization, concentration, repetition, and especially a fine artistic and religious instinct. These are the characteristics of most savant skills. I was a “Rain woman” and a linguistic genius, both at once. My mom activated, encouraged and actively taught me whatever she could to fully actualize the special talent and skill to its highest potential. Nowadays, I am glad to have been precipitated at too early an age into the world of literature. Simple children books with plenty of pictures were easy to memorize and stimulate my desire to grow up learning about everything. Why some toddlers with autism get better and develop good language and others don’t has been a mystery that is of the utmost importance to solve. I was most intriguing when I learnt that left brain dysfunction has been demonstrated in autism. The left brain is more involved than the right in language and speech. I am very much afraid that my right brain has taken over language but not speech, and for this reason, my speech is deficient with too many broken sentences for me to explain my ideas clearly.

I came to live in Hartford, Connecticut, in 2005, leaving Argentina for “the American dream.” I am a golf historian, researcher and writer. I’ve been a regular contributor to newspapers and golfing magazines in Argentina since 1992, and I teach History of Golf online at the PGA of Argentina. During the 1990s, I helped organize the Library of the Argentina Golf Association where I educated myself in the history of this game by reading The American Golfer. In golf, I’ve found a wonderful subject to work on.

Looking back over my career, I’ve learned something about the Scottish sport which I quietly and firmly adapted to my own uses: when everything in your life is uncertain, there’s nothing quite like the clarity and precision of a fresh tee and a tough green. Golf can make you a better person and put life in perspective. The best of it is that golf has developed central areas of my left brain like numbers, math and systematization: using statistical methods, giving special attention to the role played by creativity, golf taught me to always let my well-educated instinct be my guide. The more I researched into golf, the more depths in it did I discover. It was the ancient and royal Scottish sport that helped me to discover that I had a mind, a voice of my own, a more thoughtful reflective, insightful language, and a special talent for connecting data.

An authentic life must accept the limits of our being. What I most enjoy is reading – here is a way of finding the harmony between thought and reality. In times of meltdowns, I was always able to escape into literature. I attend to any book as it present itself, calmly and composedly, with the greatest single-mindedness, as if I had been sent into the world to do just that. But I am very slow to read; it is not long before I get tired and lose all track of what the sentence is about. I could not study like others and I need more time and different strategies and approaches. Sometimes I feel myself getting into situations where I can’t think. I’ve always felt my brain to be dissipated in a thousand little pieces. I am constantly bombarded by sensory information that I do not coordinate very effectively.

The very first thing that helps me to self-regulate is the absorption in the printed world. In this I find immense help in a close union of thoughts and affections with a selected author who become my friend and teacher, in the unity of our minds, because when I perceive within my mind a thought to be expressed I go on reading. Not surprisingly, authors occupy a large place in my thinking process. My work is to discover my “partner” and then with all my heart give myself to him. I always attempt to comprehend my life through the mind of others, and in turn I try to guide my thoughts towards their own synthesis, a task which takes longer than in a regular mind.

When People Overwhelm You – Be Polite

One of the most important pieces of advice for doing well in the realm of human relations is to be polite. Not only it is rude but also inconvenient to say to a new acquaintance “I don’t think you have any emotions,” and then blame autism for that. For I am certain that in this way (1) you will find no sympathy and (2) whoever experiences emotion in himself is able to perceive it in others.

I realized that when you have a developmental disability, you have a tendency to be uncomfortable in a social situation. You don’t know what to say, you don’t know where to look, you don’t know how to treat other people, you don’t know whether they feel pity for you, when pity is the last thing that you want. In my childhood days, my grandma Irma persuaded me that I do not have to feel uncomfortable in the presence of others. I had little ability to make conversation. But I began to work on the way I would be less distracted at family reunions, but still not always and entirely attentive. So my behavior, although far from perfect, began to look more and more natural. And I would nicely calm myself, being more careful to respond when someone talked to me, and I would begin to tell stories – I was always memorizing stories from books, actually – to make myself at ease. And this whole social routine that granny taught me to develop for being at ease with people was enormously effective; it made people accept me quite willingly. For nobody had expected me to be a “people person;” nobody had expected me to look them in the eyes. My grandma thought I could turn the disability on its head and make it into an advantage.

Why Do Labels Exist?

Having made a general examination of the terminology used in Autism Spectrum Disorder during these recent years, I have found good reasons to believe that there is no such a thing as a neurotypical person. Autistic does not, in fact, exist as an immense category and non-autistic and autistic alike should always be defined primarily as humans.

Temple Grandin wrote: “We are all individuals. We all have a range of skills, habits, preferences, limitations. The differences are what makes us individuals – the departures from the norm, the variations in the brain. The addition of Asperger’s to the DSM-IV in 1994 validated the idea of an autistic spectrum, but the meaning of “on the spectrum” itself has changed over the years. In other words, you don’t have to have an autism spectrum disorder diagnosis to be “on the spectrum.”

Indeed, a 2011 article in Nature reported, “In scientific circles many accept that certain autistic traits – social difficulties, narrow interests, problems with communication – form a continuum across the general population with autism at one extreme.” Why is, therefore, Asperger Syndrome considered a “disorder” if the criteria employed to diagnose it could fit almost anyone in the general population? I am convinced of the inestimable worth of discrimination and of the American Psychiatric Association’s (the DSM) very great need of it, being as I am an individual living with the effects of autism. I have been concerned for years about the multifaceted problems caused by the misdiagnosis of Asperger Syndrome in children and adults. Unlike individuals, who are diagnosed with autism as toddlers, many individuals with Asperger’s often are identified much later in their development. Dr. Hans Asperger, in 1979, considered that the children he had described had relatively normal language development, and that this was a contrast to the children described by Kanner.

They were not born, but rather they became, autistic. Many in the spectrum of Asperger Syndrome are dualist, which means they believe that society is divided in autistics and non-autistics (or neurotypical individuals). But I would say this is absurd. Rather, society is a construction of civilization, a reflection not of “essential” differences in autistic and non-autistic individuals but of differences in their situation. Situation determines character. An individual in the spectrum is not born fully formed. She/he is gradually shaped by their upbringing. I am profoundly convinced that biology does not determine what makes an autistic an autistic. Some human feature applies equally to all of us and has remained unchanged through history. However, I believe that a human’s ability to choose our own nature is central to this essence. And we don’t all automatically choose the same things.

Central to my philosophy is the assumption that neurodiversity is a natural condition. Something in me is sure that the natural condition of human beings is to be different. I believe that God made us to be different. And so, as I see it, this follows logically: if a person is chronically “ordinary,” there is something wrong. Something is missing. Obviously, it may not be that person’s fault or choice. Still, I would maintain, something is missing. I believe every one of us experiences a stubborn, inborn desire to be different.

Claudia Mazzucco, Hartford CT
April 13, 2015