An Adventure in Asperger's

Autism.

Aspergers.

Nine years ago, the words were set into my vocabulary. It was suggested that my seven-year-old child just might be on what they called “The Spectrum.”

At the time, there was very little information. I had to dig and research, and dig some more, all to get the public school system, and others, to accept that my bright, beautiful boy was indeed on the spectrum. It took me seven years, to get some on board. It took eight to get the school system on board. I learned so much about Autism, so I could fight for my boy.

Little did I know then, that in my fight, I would actually be learning about myself. I would be discovering that I too, am on the Autism Spectrum. I am an Aspie.

As I look back on my childhood, there are so many factors that today, would be considered Asperger Traits. Back then, however, Autism was not a well-known word or condition.

You see, girls were consistently misdiagnosed. Girls were diagnosed with Depression, Bipolar Disorders, Anxiety Disorders, Multiple Personality Disorders, and even Anorexia. We were looked at as snobby, immature, defiant, quiet, introverted, etc.

Some of our quirks were deemed “typical” girl, like an obsession with a boy band, or lipstick and nail polish. Asking others to do our talking for us was considered girly too. The need to stay really clean was not considered quirky.

Educationally, no one looked as closely at girls' grades as they did at boys' grades. So long as you were not failing out, you were fine. If you began failing, well, then you went to the special education room for extra help. If you were exceptional, they pushed you into Enrichment programs.

For many of us, in my generation, dubbed Generation X, we just went through our lives as being “different.” I cannot speak for every Gen Xer, but here is my story:

I was the quiet girl, unless I got to know and trust you. I later learned, from former classmates, they thought I was just stuck up. I am still that girl. I am not on the whole introverted, but I do prefer my own company, or that of children, rather than age-appropriate peers. Why?

I was that girl that did not get the jokes that everyone would tell. I still am. I have to work really hard to work through a joke, and understand why something droll is funny to others. I am good at faking it, I have adapted these forty-four plus years. Sarcasm? I had trouble with that too. I still do. My feelings are easily hurt. However, I have to pretend that I am unphased. I pretend to get it, all the while my brain is trying to figure out “did they mean that? Are they talking about me?” It is exhausting. I get agitated and sink into my own brain. Some call this a shutdown.

I also found my hearing was not great. I would always have to say “what?” “Excuse me?” and make people repeat themselves. Some of that is my ears, but I am now understanding it is more sensory than anything else. When I am in a loud place, whether it be the Casino, a concert, or a family gathering, the drone of voices, begins to blend. I start having trouble hearing, which then causes me to overthink what people are thinking of me. It causes me to want to dart. Fight, flight, or freeze, right?

All of this has manifested itself in major social anxiety. It seems to have gotten worse, as I have gotten older. I think this is because I have realized that there are few people in the world I can truly trust.

Trust, for an Aspie is hard enough. As girls, we are somewhat groomed to be kind and generous to all people, so we get taken advantage of more often than not. When I do find a person I can trust, my quirks are not as apparent. I can somewhat relax. Somewhat.

Not fully trusting makes having friends very difficult. I never made friends easily. As a girl, it was because I was looked at, as I said earlier, as “strange.” When I did, though, I tried to be the best friend I could be.

Even now, going out with friends is difficult, not just because of the trust issues, but because it is so public. Again, the noise, keeping up appearances, and preparing, is exhausting. I script in my mind every detail, yet all the scripting in the world doesn't keep a good conversation going. I always felt like I was the one who had to keep those conversations going but could never read their expressions to see if I was doing ok or boring them. By the end of a night? I am beyond tired.

Romantic relationships? HA! We won't go there. That is another issue altogether on the trust front. I am single for a reason, hahaha.

Unfortunately, I had very few friends that stuck. They always had expectations. I could hold a facade of being "OK" for a while, but eventually it started to crumble, and of course, they could not handle the real me.

Being a homebody is stressful to me too, though. I feel like I am constantly letting people down. I am ok with running to McDonald's and having a cup of coffee with a "friend" but no one seems to want to do that. They want me to go out, come over, etc. But see, at McDonald's, when my coffee cup is empty, I can utilize that as "time to go." Not to mention my teenage son may need me. I have to be able to get to him.

Talking on the phone? Dear God NO! I absolutely hate talking on the phone. With the exception of my mom and my son, it is superbly uncomfortable. My inability to read body language and facial expressions face to face is bad enough, you have no idea what it is like to try to read them over the phone! Here is a hint: you can't. Most people do not get that either. That 20 seconds, silence where the conversion pauses, and you switch topics, in a phone conversation? Yeah, it is like an hour of trauma, for me. Even tasks that seem menial to others, ordering pizza, calling the utility company, or calling my son’s school, are horrific and anxiety-inducing to me. Aspies like myself tend to try and get others to do that talking for us.

I have also struggled with job interviews. Let’s just say, I would flunk “Job Interview 101.” Why? I pre-script even that. Prior to the interview, I plan the way I will answer expected questions. As soon as the interviewer goes off my script, I am lost. I start getting overwhelmed, sweating, and stuttering. All my well thought out answers fly out the window.

As an adult female, there are societal norms and expectations that make being an Aspie so difficult. I have found that trying to conform to these norms really adds to my social anxiety. I struggle with these norms almost daily.

I have been judged and told “you are so different with person A in that situation than with me in a similar situation’” or “You are two different people, I don’t know which is the real Jennifer.” Well yeah. That is a bit true. You see, we girls on the Spectrum have adapted by sitting back in social situations and watching others so that we can learn how to act. We watch other people and how they react to social cues and pre-script them into our own interactions. This too is tiring, and clearly not accepted.

Other ways my Aspergers showed itself, without being detected, included my fixations. I was the girl that "escaped" reality, into my books and music, slipping away from all that was hard to understand.

Books were easy to understand, and I found I related in my own way to some of the characters. My favorites were Island of the Blue Dolphins, and Castle in the Sea, by Scott O'Dell. I was lured in by the isolation, the girls in the books always seemed to live in, and their ability to fend for themselves. Today, I am still drawn to stories of similar characters, but also characters that are strong and assertive. I think because I wish to be that type of woman. Jane Austen’s characters are prime examples of this.

As I grew up, music was a way for me to express my feelings. I could always find lyrics that fit my mood. When something was causing me stress, heartache, anger, etc, I could escape into Metallica, Slaughter, Queensrÿche, or Europe. These became fixations.

I found that I would latch onto a musician/band and learn as much as I could about them. As a pre-tween and tween, it was Duran Duran. To this day, I still know useless information, like (Nigel) John Taylor, bass player, was born on June 19, and his nickname was Tigger. As a teen it was Slaughter. I had fan club membership, and a scrapbook full of magazine articles, quotes, etc. Get me talking about any of these musical fixations, and I could go on for days!

These fixations have not changed. Autism is a current example. I am driven to find out more, and then to share all I know with anyone willing to listen. Unfortunately, there are very few willing to listen. “Oh, that is very interesting," I find people saying as they tune me out. At least now, I recognize that I am taking over a conversation, after a bit. Then I start analyzing what just happened, I start to worry about what they think of me, and I start getting anxious.

I analyze everything. As I said earlier, I script out conversations, and how they should go, prior to having them. If they do not go as I planned, I get caught up, and my brain kind of shuts itself off. I then have to scurry to figure out what to do next. It is overwhelming, at the moment, but afterward, I sit for hours, while trying to fall asleep, replaying what happened. Where did I go wrong, how can I fix it? etc.

I am an overly emotional woman. Things that an average person might shrug off, hit me deep. These deep feels can manifest in some ways that seem irrational. I may have a huge spike in verbal flooding, talking a million miles an hour, not making any sense to anyone, or I may shut down completely. I may get angry, for no apparent reason, and not be able to shake that anger for hours. This also includes when I sense someone else’s deep feels. Their anger, anxiety, or sadness impacts me. It takes me a while to get back to “myself.”

One thing that can cause an overreaction in my feels is when my daily routine or schedule is changed up. Unlike most people, I cannot just go with it. I literally start having a panic attack, and cold sweats. It takes me a good bit of time to get used to change.

In the past, when I was younger, and before I knew about Autism, I went through a period of self-loathing. Even as I found Jesus, I hated that I was so different. Now, on my never-ending search for more Aspie Info, my fixation, I am seeing that I am ok. I finally can look back at my life and say "Ohhhh! That is why!" As I continue through my life, and an oddity in my personality rears its exceptional head, I no longer get too bent out of shape.

For that, I have my parent support group to thank. It is those in that group, both Neurotypical ASD parents, and those on the spectrum themselves, that listened to my story and opened this door of self-discovery. They gave me screenings and tools and accepted me as I am.

Who would have thought, that a journey to help my own child, would lead me on a whirlwind ride of self-understanding and acceptance? I know that I am only just beginning in this adventure, and I look forward to every new discovery, both for myself, and my son.

For more information, contact me at [email protected]