Flying Under the Radar: On Being a Woman with Asperger's
When I was 28 years old, I was diagnosed with Asperger’s Syndrome. While getting my diagnosis in some ways was a relief, it came a bit too late—and offered no cure, treatment plan or prognosis. Asperger’s is a life-long condition, and being told you have it does nothing to take away the immense suffering you endured beforehand, it simply gives a name to why it happened.
I had been prompted to get diagnosed by a friend who also has Asperger’s. My mother had said for years that she believed I had it as well. Like many other women on the Autism Spectrum, I had flown under the radar and fallen through the cracks—and thus missed out on services I could’ve had, and instead was left to rely on my own devices.
Asperger’s is named after the Austrian doctor who first put together the picture of what high functioning Autism looks like. There was only one problem with what he did—he only studied male children. This sadly cast a prototype of the syndrome, and created a pattern that has continued today. Women are vastly underrepresented in the study, diagnosis and resource offerings for autism spectrum disorders. One theory of Asperger’s is that it is an “extreme form of the male brain,” and it is outright stated to be more prevalent in males—yet the number of girls and women being diagnosed has increased over the years, and the fact that we present our symptoms differently has just now entered the spotlight. I believe in the coming years it will be revealed that it is not actually more prevalent in males—just more obvious.
From the time I was very little, I was highly sensitive. I was traumatized by the slightest form of violence—if I saw a cartoon character get hurt, it bothered me, sometimes even physically. I couldn’t even stand to hear curse words. I had an extremely black and white sense of right and wrong. I also had an incredible imagination. I was creative and spent an inordinate amount of time daydreaming and writing stories. I lived in my own little world. I was great at mimicking people, and often preferred talking with adults and teachers to kids my own age.
As I entered my teens, things went to shit.
I was made fun of and bullied. I didn’t understand, even though I desperately wanted to, how to make friends with other girls. While I developed a knack for foreign languages and excelled in drama and choir, I was picked on and singled out by my teachers. I rarely received A’s, even when I was told I was bright. I was called weird all the time. While many of my peers told me they thought I was the best actress in the school, I was kept out of the repertory theatre program. I had no idea how to approach boys even though I desperately wanted a boyfriend. I was often the one to show interest in them, and I would later learn my behavior was inappropriately aggressive; as a girl I was supposed to “let them chase me,” but instead I would make a fool of myself and sometimes even put myself in danger. The boys I did date were loners and also struggled socially.
At 19, I suffered a nervous breakdown. The stress of going to a performing arts school in a big city had me in pieces, even though it was my dream and I was attending on scholarship. I figured life would get significantly easier there—that I wouldn’t be bullied by other students or teachers, that I would “find myself” and achieve my dreams of becoming a famous actress right away, that life would finally, at long last, be just easy-peasy.
I was incorrect.
In the 12 years that followed, my life became a roller coaster. I got fired from numerous jobs, often in humiliating ways. I relied heavily on my parents for financial support, and to this day have not been able to be on my own for a long period of time. I had a plethora of off-and-on, dysfunctional relationships, and often put myself in precarious situations with men and women I was interested in. I bounced from one apartment and living situation to the next across coasts and saw myself through episodic homelessness. I endured every type of abuse imaginable from partners, roommates and acquaintances.
My struggles have not gone away in adulthood. I have trouble with my sense of self after a lifetime of imitating others and taking on other identities to fit in and cope. I have never been able to manage a typical job without some kind of emotional exhaustion or social issue. I live with my family. I wrestle with anxiety and depression, OCD, and sleep issues. I struggle with relationships and decision making.
Nearly everything about my life and who I am fits what has only recently emerged in the last few years as the common characteristics of adult women with Asperger’s. Even so, what I’m usually told when I reveal my diagnosis is that I don’t look or seem or act like someone with Asperger’s. This is because I have spent my life, like most women on the spectrum, trying to my best to cover up my deficits in executive, social and emotional functioning. My youngest sister was diagnosed with Asperger’s when she was very little, but I always assumed I didn’t have it because there were stark differences between her and I. Being diagnosed made me realize the reason that it is called a spectrum, and there’s a saying that if you’ve met one person with Asperger’s, you’ve met one person with Asperger’s. Aspies are all individuals whose experiences are more colorful and fluid than the spectrum itself.
While there is obviously a major downside to having Asperger’s—as I have shown—I wouldn’t trade it for a neurotypical experience because of its conversely amazing upside. Most Aspies have savant or near-savant abilities. I believe what we lack in one area, we more than make up for in others. When I was given an IQ test as part of the diagnostic process, I scored a 143 verbal IQ. I excel in singing, acting, comedy, dance, writing and foreign languages. Despite my problems, I have had a wide array of great opportunities and experiences in my life that I wouldn’t have had otherwise. And like most Aspie women, I am passionate and resilient. I persevere despite huge obstacles, believe strongly in justice and doing the right thing, am very sensitive to the suffering of all living creatures, and thus am making the world a better place as I try to do as little harm as possible. I also know that I am making strides to improve myself and my life each day, and that my future holds a lot of great things.
I look forward with the hope that there will be more resources in the future for women with Asperger’s syndrome. My ideal world is one in which we are appreciated for our unique attributes, in which our gifts are nurtured and treasured, and in which we are given help for our weaknesses instead of shunned, marginalized and left in the dark to grasp at whatever there might be.
I know that if I didn’t have my family or friends to count on, I would not be alive today. This is true for my other Aspie friends as well, and this must change. We are quite special people, and for all that we go through, we still manage to sparkle and be kind.
We deserve good. We deserve to be recognized and seen. We deserve to survive.