Wednesday, February 23, 2011

The Politics of Fitting In

I was close to tears last year when I read a section of a book for parents of kids with Asperger's syndrome. This section advised parents to make sure their kids "blend in," reminding them that kids with AS are not affected by peer pressure. It went so far as to tell parents that a sixth grader won't stop watching Winnie the Pooh just because of his age, nor will he realize that kids don't bring umbrellas to school on a rainy day.

Before you start typing a response that begins with, "Well there is another side to this," I just want you to reread the above paragraph, replacing all instances of "Asperger's syndrome" and "AS" with "Down syndrome." Speechless, aren't you? I am sure you can imagine the uproar that would ensue if there were books that advised parents of kids with Down syndrome to "fit in" socially or academically. And why should kids with intellectual disabilities be exempt from this expectation? Because their IQs are below a certain level? Okay, if that's the case, then perhaps there should be an MQ-- maturity quotient test-- for kids with AS to take to excuse them. Oh, but wait. Kids with Down syndrome also have physical features that alert people of their disability, and kids with AS don't. Fine. Give kids with AS a T-shirt to wear that alerts others that they think differently and have different tastes.

No matter how you cut it, this pressure to make anybody-- whether or not they have a disability or anomaly-- is immoral. From my personal experience-- and from what other Aspies have told me-- all they ever wanted in life was to be accepted for who they were. By advising them to conform to what amounts to herd mentality, the authors of this book (and many others that give similar advice, especially to girls, by the way) are basically throwing up their hands and saying, "Okay, nobody is going to accept you for who you are, so you need to change who you are." Although my parents did not intend it, that was the message I got from them, loud and clear, when I was growing up with undiagnosed AS and pressured to "fit in." This further shattered my self-esteem, which was already severely damaged from bullying at school. I felt that I was being told to answer to the bullies. Besides, if a kid is told how important it is to fit in in silly ways-- like what movies to watch, what clothes to wear, and not to carry umbrellas-- why should this same person say no to cigarettes and drugs?

What we as a society need to do is raise consciousness and educate the world about Asperger's syndrome. If we don't, our schools will be run by bullies and so will the rest of society. Change starts with you, and it starts now.

Thursday, February 17, 2011

The Road to (Self-) Diagnosis

Growing up in a small, homogeneous town in Pennsylvania, it was excruciatingly clear that I was different. I knew long before I started experiencing chronic teasing in second grade (which continued through ninth grade), long before other kids nicknamed me "Space Cadet" and "Alien." I knew it long before I began to sense that my parents thought there was something wrong with me, long before teachers and parents began calling my parents with "concerns." 

By fifth grade, I knew that I had ideas, perceptions, an imagination, and a sense of humor that often significantly deviated from what much of society expected. I also got inordinately obsessed with certain movies and television shows and I knew it was weird to do so. Like many people, I, too, thought that there was something wrong with me. I struggled to figure out why I was so different. But it was the early 1990s and I had never heard of the concept of someone's brain being hardwired differently, or even mental illness. In the '80s and '90s-- when I was growing up-- few people had. 

My parents first brought me to a psychologist in the middle of my fifth grade year. Dr. Klein (not his real name) told my parents and me what amounted to, "I don't know what to tell you. I've never seen anything like this before." I stopped seeing him after three years because it was clear that he wasn't helping and, although I liked him as a person, was notorious for analyzing things that had no deep meaning. 

The summer of 1998-- three years after I had last seen Dr. Klein-- was a major turning point in my life. The concept of people's brains being literally wired differently began to dawn on me, and it drastically influenced the way I understood myself as well as other people. I strongly suspected that my childhood and early adolescent obsessions with movies and television shows -- not to mention the obsessive crushes I found myself beginning to get as of late-- indicated Obsessive Compulsive Disorder (OCD). 

Unfortunately, despite my epiphany about OCD, I struggled with emotional frustration and meltdowns as well as major setbacks in social interactions. My summer camp-- the only place I had ever felt like I truly could be myself-- was not going to hire me as a first-year counselor in the summer of '99. With no friends at school-- I just couldn't connect with anybody-- I had no one to turn to, no backup plan.

In the fall of 1998, for the first time in three years, I was back in a therapist's office. Dr. Fried (again, a pseudonym), was a much, much better therapist than Dr. Klein. After the first or second session, he spotted a common denominator in my personality. "You're a very intense person," he said. Indeed, I am! I experience life in general intensely: favorite movies, friendships, crushes, and worrying. Based primarily on the obsessive worrying, he agreed with my theory that I had OCD and diagnosed me with the condition.  I only saw Dr. Fried for about six months-- college was just around the corner and I would be moving to Brooklyn, NY-- but he helped immensely. I moved to Brooklyn in an optimistic state of mind. 

In my junior year of college, however, my problems began to resurface. I continued to have social problems, not so much with other students (I made some good friends), but with teachers. I was in art school and many of the teachers fit the stereotype of the temperamental, self-righteous, imbalanced, and just plain nasty artists. Despite the OCD label, which was initially empowering, I began to suspect that OCD didn't paint an entire picture. I knew, somehow, that it just wasn't quite it. There were so many things-- like my problems reading social cues-- that just didn't add up.

In 2002, towards the end of my junior year of college-- and one of the worst years of my life-- I came across an article in Time about autism. As far as I knew, autistic people were "those people who don't talk." But then I saw a short description of Asperger's syndrome (AS) in a side bar. Obsessive interests. Difficulty interpreting nonverbal social cues. Awkward motor skills. I ran some searches on the Internet for AS and found out more. Obsessive, obsessive, obsessive. Difficulty making and keeping friends. Experiences the world differently. Misinterprets situations. And so forth.

The pieces fell abruptly into place.

Over the next year, I bought a number of books on AS and essentially diagnosed myself; a psychiatrist confirmed my diagnosis in the spring of 2003. After years of poking around in the dark and only finding partial answers, a complete, coherent picture was finally formed. AS was added to the DSM in 1994, but the vast majority of professionals weren't aware of it until a little after the turn of the century. 

At long last, I had an answer. How did I feel then? How do I feel now? As I said, 2002 was one of the worst years of my life. 2003 was the absolute worst. Whereas the discovery would have come as a relief in high school, a time when I was more optimistic despite my insecurities, I felt embittered and frightened. How could I possibly hold a job after graduating if I had this problem? Would I have to live in a group home or on SSI? Looking at my turbulent childhood and what looked like was going to be a difficult adulthood, I felt that nature had played a sick joke on me. 

Things have changed since then, and I'm a happy, well-adjusted adult, am relieved to have the AS label, and I am able to interact socially as well as the next person. Most people are amazed when I tell them I have AS. And yes, I do have a job. I suppose part of me feels cheated because I suffered for much of my childhood and my early adulthood, just by the sheer accident of being born in 1980 instead of 1990. But I know I should look on the bright side-- at least I wasn't born in 1950. People didn't go to therapy in those days; many people thought it meant you were crazy and should be locked in a padded cell. Sometimes I wonder if that would have been my fate, with the emotional meltdowns that I had from experiencing a world that made little sense to me.

And while we're on that note, it's important for society to understand something important about AS-- it isn't a mental illness and there isn't necessarily anything psychologically wrong with the person who has it; his or her neurology is just different. What Aspies need is not to be cured anymore than a gay person needs to be turned straight. After all, if we cured AS, we would have no Albert Einsteins or Temple Grandins. Aspies-- like gays-- need understanding and support and to have their strengths nurtured, not their weaknesses emphasized. I feel privileged to at last be entering an era where this attitude is starting to become more prevalent. 

Sunday, February 13, 2011

Articles I have had published on Asperger's Syndrome

This technically doesn't count as this week's post (that comes Wednesday) but for anybody who is interested, I got two articles published in the online edition of Autism-Asperger's Digest last year.

So here you go, something to chew on until Wednesday! :)

You will need Adobe Acrobat Reader to see these articles. It's free.

Characterizing Asperger's Syndrome 
Isn't it hard when children with AS cannot relate to anybody in real life? Sometimes reading about or watching a fictional character can be therapeutic.

Late Bloomers: Girls in Adolescence
While a lot of neurotypical girls are throwing themselves head-first into adolescence and going gaga over Cute Boys, girls with AS would rather continue their childhood pursuits and feel left behind. What's an Aspie to do?

Wednesday, February 9, 2011

Welcome to Eccentrics United!

Eccentrics United: An Asperger’s Syndrome Blog

            Welcome to Eccentrics United. This is a blog for people with Asperger’s Syndrome, their parents, and their friends. My name is Julie and I am a 30-year-old woman on a lifelong journey to understand herself. When I was growing up in the ‘80s and ‘90s, I dealt with a society that I did not understand and one that understood me even less. I had a difficult time making and keeping friends and got inordinately obsessed with certain movies and television shows. I knew this constellation of quirks was unusual, and during my childhood it was a condition with no name.
            Today, I know that the condition is called Asperger’s Syndrome. I first learned about it in 2002 from reading a sidebar in an issue of Time whose cover story was about autism. After a year of further research, I diagnosed myself (a psychiatrist later confirmed my self-diagnosis). At last, I had some answers to the questions that had been eating away at me for so many years. Everything finally started to make sense.
            Through Eccentrics United, I hope to celebrate individuality and eccentricity and give others insight into Asperger’s Syndrome. I encourage you to share your stories about yourselves or a friend or family member with AS. I am also happy to answer any questions you may have about this perplexing condition. I am not a psychologist by any means, but is it not helpful to get advice and insight from someone who actually has AS rather than who has just studied it?
            On Eccentrics United, I address a manifestation of Asperger’s that has only recently been documented. Primarily affecting females, people with this type of AS often live in a fantasy world. They become obsessed with movies, literature, music, theater, or animals rather than the stereotypical Asperger’s obsessions such as computers, trains, or math. They are often creative artists, writers, actors, or musicians. They would love to be a part of fantasy worlds such as Harry Potter or Lord of the Rings. This is the type of AS that I have and thus understand the best.
I hope you find this blog useful. Check for updates every Friday.