Saturday, September 24, 2011

Glee and Asperger's Syndrome

Below is a copy of a letter I wrote to Fox and posted on Glee's official Facebook page:

For two seasons, I have watched and loved every episode of Glee.  I love that a show can embrace every difference and disability with kindness and humor.  It makes me nostalgic for my own show choir days and the only time in my life that I ever felt I belonged somewhere.  You see, I have Asperger’s Syndrome and fitting in is next to impossible.

Imagine my joy when a character who represents my place on the Autism spectrum was introduced and presented with the same kindness and humor as all the other characters…or rather then joy I might have felt if that had actually happened.  Instead, enter Sugar Motta, the “bitch with a twist.”  Maybe you thought throwing in “self-diagnosed” would make it all right.  It didn’t.

I am a 35 year old woman with Asperger’s Syndrome.  I was only diagnosed last December.  You see, it’s much harder to diagnose Aspie females because we learn social coping methods more readily than our male counterparts.  For those of us who grew up in a time when Asperger’s was not widely known, we stumbled through our childhoods and wondered why we never grew out of our “awkward phases”.  As adults, finding an autism literate therapist is harder than you might think.  Asperger’s is largely misunderstood, even by the so-called experts.

Because of all this, many Aspies are self-diagnosed.  They seek answers to why they feel so different from everyone else and eventually realize the truth – that they, like me, are Autistic.  They are not looking for an excuse to be “bitches”.  They are looking for acceptance.  We recognize our own and do not discriminate simply because someone does not have an “official” diagnosis.  Are there people who claim the Aspie label so they can get away with bad behavior?  Yes.  But not nearly as many as you might think.

Unfortunately, because of characters like Sugar, myself and Autistic people like me are accused of making it all up.  We battle discrimination and misunderstanding on all fronts…even within our own community.  There is a lot of bad information around, leading to misconceptions about why we are the way we are.  Good writers research the characters they create and it’s clear that someone did not do their homework.

You can make this right.  Learn the truth about us and portray us correctly.  Start here:

We are Autistic.  We are Aspies.  We deserve to be heard.

Wednesday, September 7, 2011

9/11 Reactions From an Aspie

With the 10th anniversary of the 9/11 attacks approaching, there is little one can do to avoid the onslaught of stories, new and old, from survivors and witnesses. With empathy, as it relates to Autism, being on my mind lately, I can’t help but look at what happened that day and in the years that followed and wonder how anyone could think that people like me are incapable of empathy.

Like most people, I remember vividly where I was that morning. At the time, I shared an office with another employee, who insisted on listening to a radio station I hated. The morning show was particularly annoying to me and I did my best to tune it out. For some reason though, on that morning, I was the one who heard the words “fire” and “World Trade Center” and turned up the radio.

The news was sketchy at the start of it all. First we heard it was a fire that had broken out. Then that a “small plane” had hit the north tower. Then that it was a commercial plane that had crashed by accident. We turned on the news in the conference room. Then the south tower was hit and, with it, came the realization that this was no accident. We were under attack.

Soon the news came in about the Pentagon and flight 93 in Pennsylvania. We watched in silence as the south tower collapsed. I think I was the first to speak, though I can’t be sure. My own voice sounded foreign to me as I said, “Oh my God. There’s no way they got everyone out in time.” I don’t remember saying anything else.

Once the north tower collapsed, the news was all words and pictures of the devastation. I couldn’t watch any longer. The images of fire and smoke and ash and the tear-streaked faces of witnesses were too much for me. I felt the overwhelming need to make myself useful, so I fixed a toilet in the ladies room that hadn’t been working.

The rest of the day was a blur. My office is on Walt Disney World property and there was fear that Disney might be a target. We stayed open, but business came to a halt. No one was calling or coming in. They were, like us, glued to the news reports. I wanted to go home.

I went to my mother’s house that night. We ate ice cream and watched the President’s address. I bought two new pairs of shoes that weekend. I moved out of my apartment and lost my job a month later. By Christmas I was still unemployed. In January, I was rehired. I moved again in March. In November, my niece was born and my mother got engaged. Life went on.

Now, ten years later, I still cry reading the stories of the victims and survivors, the heroes who sacrificed themselves, the search dogs who kept looking despite their exhaustion, the children who lost their parents and the parents who lost their children. I find myself full of sadness, pride and wonder when I think of Todd Beamer and the words, “Let’s roll.” Though I know no one who died that day, I grieve.

I also struggle with anger towards people who insist that, because of a few extremists, all Muslim people must be violent and bent on the destruction of all other cultures and religions. This is no truer than saying all Roman Catholics want to kill Muslims, Greek Orthodox Christians and Pagans because of what happened in The Crusades or that all Fundamentalist Christians want to bomb abortion clinics because people like David Leach tell them to. I despise people who refuse to look at an individual person’s actions, but instead lump them all into a group.

We on the spectrum are often misunderstood in this way. We may not express ourselves in a way that is perceived as “normal”, but this does not mean that we don’t feel. When you’re watching the 9/11 memorial dedication this weekend, know that I’m watching too and that my heart aches for the lives lost just like yours.

Tuesday, September 6, 2011

An Aspie With Auto-Immune Disease

I have good sensory days and bad sensory days and in-between sensory days. Sometimes the slightest noise makes me want to scream and kick the walls of my office. Other times I can cope with whatever endless nonsense seeps in around the cracks in my door.

I have lived with Rheumatoid Arthritis since May of 2005. Through the diagnostic process, I had to face many of my fears. Talking to new people, as I was meeting new doctors and nurses and lab techs regularly, was not something I could avoid. I am single and at the time lived too far from my family to ask anyone to act as an advocate for me. My fear of needles was challenged, as I was having blood drawn a minimum of once a week and eventually had to learn to give myself injections. My fear of changes to my routine shook me more than any other. My routines keep me calm and suddenly I was helpless. There were days when I had to call in sick to work because I couldn’t get out of bed. I had to cut my long hair, because I could no longer lift my arms long enough to wash it properly and was unable to grip a hairbrush. I gained 50 pounds in 6 months because of the many medications I was taking and because I was suddenly forced into a sedentary lifestyle. There was a great deal of change in a very short time.

When the pain was at its worst, I was irritable and most people understood. Being unable to walk or hold a pencil without excruciating pain could upset anyone. When the medications began doing their job and the pain lessened, I still had trouble with sensory invasions, as I always had. It was just different now. Even on a relatively pain free day there were things that I had to cope with, like feeling sick from the drugs or being upset about my hair falling out.

For the past year, I have been in remission. Though my doctor never said the word “remission”, I was symptom free and off all medications, thanks to a careful regimen of vitamins. I had begun making an effort to be active again. In the middle of this wonderful year, I received my Asperger’s diagnosis. I began to feel “normal” for the first time in as long as I could remember.

A few weeks ago, I flare up hit me like a freight train. It all came back – the pain, the exhaustion, the depression, the helplessness – and I was PISSED. I hated having to agree to go back on the very medications which had made me miserable while saving me from further damage to my joints. But here’s something new…

Like every other part of my life, I have to look at this through my new “down the rabbit hole” perspective. I am in pain ALL the time. I take Prednisone, which makes me have bizarre food cravings, out of control hunger pangs and muscle spasms. I take Methotrexate, which makes me want to sleep for days and at times has made me violently ill. I take Mobic, which makes me sleepy and hyper at the same time. How can I deal with sensory overload when I can’t shut it out? How do I cope when the attacks on my senses are coming from within my own body?

This entire saga is playing out with frustrating familiarity, but I also find it fascinating. I can now look back on how I felt six years ago and understand why my mental response to the experience seemed so different from other people I spoke with who had also learned to live with RA.

The medication is beginning to help and I haven’t lost hope. I got my disease under control once and I’ll do it again. Fingers crossed (metaphorically, because…OUCH!) that it will happen sooner rather than later. Quite frankly, this sucks.