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Mike Elk

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Coming Out of the Closet ... About Being Autistic

Posted: 12/15/09 07:06 AM ET

Today as I leave for Brazil, I go back to a place and a people that literally saved my life.

Without Brazil, I wonder how I would even be alive today. Brazil was the place that taught me to finally be happy with myself despite my numerous defects.

As a teenager, when I was diagnosed with an autism spectrum condition known as Asperger's Syndrome, it seemed like a death sentence.

Asperger's Syndrome is a condition in which an individual has an autism-like focus on one particular subject to the exclusion of everything else. People with Asperger's tend to be so focused on a few things that they often miss social cues and seem distant or aloof. With Asperger's Syndrome, happiness and pain are all-encompassing feelings to the exclusion of everything else, leading to extraordinary mood swings. People with Asperger's syndrome comprise a group that ranges from people who are barely able to talk to those, like me, who just come off as slightly awkward and idiosyncratic.

For many years, my awkwardness was much more profound than it is now, and the mood swings so severe that they were debilitating. As a hopelessly dorky kid growing up in a working class neighborhood of Pittsburgh, I was relentlessly teased, and beaten up. With the exception of my golden retriever and my siblings, I didn't really have many friends until my later teenage years.

And Books! Books were my best friends. I tore through volumes considered far too complex for my age, reading The Autobiography of Malcolm X twice before I reached the age of 10. As a young child, I knew there was something that made me different. The story of the struggle of African-Americans showed me that even good people are persecuted for just being merely different.

Knowledge of the persecution African American underwent to fight for their rights gave me comfort during the constant taunting I endured. I became obsessed with the civil rights movement and its doctrine of self-liberation, which would inspire my later career.

When I was in junior high, a psychologist told me that I had been diagnosed as being autistic -- having Asperger's syndrome -- It felt like a death sentence. I was depressed. I could never be normal like everybody else.

I went to therapy for years and years and made great progress over time, but still felt out of place. After admitting my diagnosis to a few high school classmates as I way to explain my weird habits, I was ridiculed.

As a result, I kept my secret from almost everyone for the next ten years. Who wants to be written off as being crazy? I tried as hard as I could to act "normal" and achieved a certain degree of success in blending in a non-autistic world, but still felt an underlying sense of insecurity that I was hiding some big part of who I am.

I became extremely self-conscious, constantly gauging my behavior, afraid of saying something wrong or misreading a social situation. I fell deeper into depression.

College as working class kid from Western Pennsylvania at rich, preppy Bucknell was often painful because I was a social outsider, not only due to my Asperger's but because of the vast differences in my socio-economic background. I didn't grow up with yacht clubs, country clubs, private schools, ski trips, formal dinners, tennis lessons, and all the trappings of the social elite. At Bucknell, I was now both socially awkward and "white trash" for the first time in my life.

Finally, when I was twenty years old, I went to Brazil to study the landless worker's movement -- workers who were trying to liberate themselves from an oppressive system where powerful landowners determined who starved and who lived. While the workers sought to liberate themselves from oppression, Brazil liberated me.

The people of Brazil, living in the most racially diverse country in the world, are naturally extraordinarily accepting of all kinds of people. It's a romantic culture, where the people are passionate, arguing and laughing with an intense gusto about all manner of subjects, seeming to lack self-consciousness as they do. Everyone seemed to share the same intense focus and passion that I had felt only autistics had in the U.S.

Finally I found a place where I fit in. Middle-class Brazilians talked openly about going to see their therapists. I remember being terribly afraid to admit my Asperger's to Claudio, the father of my host family. He turned to me and said, "So what? It changes nothing. You make me laugh and you write beautifully; that's what matters ... so stop this nonsense and self-pity. Everybody is a little bit crazy; we realize our faults and work to improve them"

Together, Claudio and I worked a lot to improve my faults. Claudio became my padrinho which in is the equivalent of a "second father" or godfather in Portuguese. He became my closest friend in the world.

With Claudio's guidance, I was finally able to accept myself for who I am and recognize that most of what was "wrong" with me existed only in my head. In actuality I was happy with who I am as a person.

The passionate focus characteristic of those with Asperger's had made me a passionate activist. It had me a successful, driven activist, and a writer. I embraced these passions along with jazz, literature, people, politics, and the samba that I discovered in Brazil. I was only unhappy when I thought about what other people thought of me.

People are often afraid to work on their problems because society tells them that suffering from depression or just being eccentric means you're crazy. And if you're crazy, your ideas don't matter, your thoughts don't matter, you don't matter, so most people try to hide it instead of working to improve their lives in the open.

But what's crazy, anyhow?

Forty years ago, homosexuality was considered a disease by psychiatrists and the Diagnostic and Statistical Manual of Mental Disorders. As a result of that stigma decreasing, the suicide rate amongst those who identify as LGBT has decreased significantly. Today, society for the most part has learned to accept a diversity of sexual orientations and homosexuality is no longer considered a "disease" by the medical profession.

What I have come to realize is that every mind has a unique shape. There are no two minds that are alike so labeling someone as crazy is just simply insane.

Who determines what is crazy anyhow?

A Wall Street CEO that owns several yachts and vacation homes, but refuses to pay his employees a living wage is a lot crazier and destructive to the rest of us than a woman who struggles with anorexia or a young child that stutters . Yet in society, we view the Wall Street CEO as normal and automatically write off the others as wackjobs despite the fact that they might believe in creating an economy that works for everyone.

For five months now I have debated writing this piece in fear. I worried about the risk to my career as a political activist and writer in revealing something like this about myself. However, writing it now seems like the most liberating thing I can possibly do. I have nothing to feel ashamed about anymore and can engage others openly exposing who I truly am.

20,000 people needlessly commit suicide every year, many because they don't know how to deal with the unique characteristics of their own minds. They feel that the only solution they have to end their suffering is by only ending their own life.

They are afraid to open up and talk about the issues that prevent them from being happy in their own lives. I for one am not willing to encourage a culture of shame like that. Therefore, to come out of the closet and live openly as an adult proud of the fact that I have Asperger's Syndrome.

With over 26 million Americans diagnosed with some form of depression often a result of feeling different in a conformist society, we should be able to talk about these things openly. Each of one us being is different in a way that makes society rich and exciting. Realizing this is what liberates us and helps us to realize the beauty that each of us contains.

Today the thing I find most beautiful and cherish the most in my life is the very thing I sought to hide as a teenager.

I wouldn't trade having Asperger's for anything in the world despite what a socially awkward guy it has made me.

I love how Asperger's has made me sensitive to the experiences of others and solidified my understanding of outsiders. When you are an outsider you tend to be friends with other outsiders like - foreigners, gays, people of color, and the so called "white trash."

I love how Asperger's has made me want to reach out to people like the teabaggers and Glenn Beck followers who others have said were unreachable because many people said I was unreachable. Working through Asperger's has taught me a tremendous amount about reaching out to "the other." Because of Asperger's I don't grasp social rules the way others do, and this allow me to reach across what other might view as an insurmountable social divide.

I love how Aspeger's gives me a reason to laugh at myself. Laugh at myself for my goofy ways and idiosyncratic habits. Laugh because I am often too nervous to know to say in a conversation so I just say a joke.

I'd much prefer a society where people laugh at themselves and talk about their problems than commit suicide.

I've been down that road of self destruction a few times myself. What always keep me going was that thought that despite how sad I might be that by sharing my story I could make others who had similar struggles , feel less alone and happier.

I made a promise to myself that I would try to work through my problems in the hopes of helping other work through their own.

And when I needed to remind myself that promise, I repeated the last stanza of Robert Frost's poem about his own struggles with suicide "Stopping by the Woods on a Snowy Evening":

The woods are lovely, dark and deep. But I have promises to keep, And miles to go before I sleep, And miles to go before I sleep.

And to all those out there who feel outcast, abnormal, or alone, you should know that you are unique, loved, and my dear friend.

Friends, we have promises to keep ... and miles to go before we sleep.

 

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