Lost Generation

I am part of a lost generation of autistic women, girls who never really fit in socially but functioned well enough in school to be overlooked. Girls who could perform academically, even if they struggled to make friends. Girls who were labeled as being shy because making eye contact and conversations were difficult. Girls who were keen enough to read others, to glean information on how they should act in public, but who were simultaneously oblivious to subtle social cues. Girls who had terrible self esteems despite excelling in school or other activities. And girls, like me, who always felt different, as if they didn’t belong anywhere. We fell through the cracks because we were mostly well behaved, we didn’t make noise, or get in trouble. We were people pleasers who never learned to say no, even when saying yes caused us a great deal of anxiety or pain. 

Essentially, we were brushed aside and ignored because we weren’t male, and society was so focused on fulfilling the needs of boys they forgot about girls. Or rather, autistic boys didn’t fit their gender stereotypes—they weren’t gregarious and they didn’t play rough—so adults began to question what might be “wrong.” Boys also tend to act out—kicking or banging their heads—when they feel overwhelmed or are unable to communicate. Girls withdraw into themselves or retreated into a corner which is far less problematic in places such as school and the less of a problem you are, the less likely you are to be noticed. Also, when boys are pegged as being different or weird by their peers, they don’t seem to make the same effort that girls do to blend in. Girls are much better chameleons, learning early on to mask the traits that mark them, a survival skill that ensures that they avoid detection by not setting off any alarms.

Armed with this new information, I understand my younger self so much better, but it also fills me with a great deal of rage. I’ve been unhappy, severally depressed, anxious, confused, and at times, suicidal, during much of my adult life because my fucking brain and nervous system don’t function in a neurotypical way, and no one ever gave me the necessary tools to overcome my severe limitations or to navigate the world properly. My greatest skill is slinking into the shadows and disappearing whenever I’ve felt the need, which is almost always. But I’m so freaking talented at blending into the landscape that even when I desperately wish to be noticed, I never stand out, not in a good way, because even when I want to be seen, my instinct is to avoid detection and rejection at all costs. But if I had been born a boy, the odds are I’d have gotten help long before now. If I had been born with a different anatomy, society’s expectations of me would have been drastically different, and as a result, someone, before I hit the age of fifty, most likely would have identified the root cause of so many of my shortcomings and failures. If I had a Y chromosome instead of two Xs, science would have cared about me.

But I had the unfortunate luck of being born a girl in a world that has always been kinder to boys, a world in which females are an afterthought, a world that extends more resources to boys and encourages science to prioritize male needs over female ones. Girls are expected to be reserved and meek, self-conscious and sensitive. So when those traits manifest themselves in the extreme, girls are smiled upon by their elders, we’re patted on the head and rewarded with empty words for good behavior. And all the while we’re crying inside, silently screaming to be heard, to be understood, to be helped, but we can’t make too much noise or remove our masks because if we do, we’ll only be picked more, ridiculed for our weirdness, and stigmatized for our differences, but never helped. The help went to our brothers, kids born with the right body parts, the ones who were expected to excel in school and succeed in life, whereas we girls were only tasked with survival. I survived, but society and science, the sexist world in which I grew up, deprived me of happiness, stability, and opportunities to turn my passions into careers, my dreams into realities.

It’s not like there weren’t any markers, any indicators that I wasn’t neurotypical. Looking back, there were red flags everywhere. They pervaded every aspect of my life reaching all the way back through my childhood. Most women who learn they are autistic later in life have a history of being misdiagnosed. We know something is wrong. We actively search for answers, but for whatever reason, teachers, therapists, and psychiatrists get it wrong. They label us primarily with anxiety, Borderline Personality disorder, or eating disorders and for years, the treatment they give us offers some relief, but not nearly enough. We continue to suffer because our autism remains hidden.

I was, and always have been, a Dr. Jekyll and Mr. Hyde of sorts. At school, in public, I was quiet, I kept to myself, and I didn’t cause problems. I learned how not to be seen and that pseudo-invisability protected me, because if I didn’t have to talk to others, interact in a meaningful way, then I didn’t have to deal with the anxiety bubbling inside of me. At home, however, I could be, in the words of my mother, “a holy terror.” I needed constant stimulation, constant attention, and if I sat too long I grew restless. My father always told me I had more energy than anyone he ever knew. Even after my son was born, he marveled over the way I flipped the usual parent-child narrative. Instead of the child exhausting the parent, I kept my kid going until he crashed and needed a nap. But it wasn’t just my inability to be still that tried my mother who generally had the patience of a saint. It was my meltdowns that eventually branded me as being bad, misbehaved, or overly emotional. I had no control over them—I still don’t—but my parents didn’t understand them. My mother still talks about my temper tantrums, their severity and frequency and how she had no idea what to do with me when I “acted like that.” I think what amazes me most, in retrospect, is that this duality was never questioned. How could I be so well behaved in certain settings but unhinged in others?

And I never outgrew it, the fact that I can be one person in public and another in private. However, as I got older, sometimes it was a great deal harder to hide my meltdowns in public settings. I just couldn’t contain them long enough to get somewhere safe, somewhere unseen, somewhere I could privately kick and scream until I burned myself out without judgement or ridicule. These intense emotional bouts eventually put a strain on every aspect of my life from friendships to work, making it increasingly harder to hold down a job and maintain personal relationships.

By the time I reached my late twenties, depression began to factor into the equation. That’s when I first started seeking help from mental health professions. Therapists were a waste of my time. I would talk and they would nod, but I never got the sense they cared. In frustration, I quit after a couple of sessions each time. When I saw a psychiatrist, after only one hour, he diagnosed me with cyclothymia—the mildest form of bi-polar. Sixty minutes, that was it. Looking back, it hardly seems enough time to make a credible diagnosis. But apparently, he viewed my descriptions of meltdowns as a form of mania—anger and increased energy to counter the depression I felt at other times. Not once did he ask any probing questions that might have explored any of the ways in which autism was already manifesting in my life. I was clueless. At the time, I knew nothing, absolutely nothing about autism. It hadn’t even been covered in any of my graduate level education courses. But autism (and aspergers syndrome since it was the early 2000s) was most definitely in the DSM, the Bible for mental health professionals. Why he chose to ask me questions that led to a bi-polar diagnosis, instead of once that might have exposed my autism, I’ve no idea. Perhaps it was easier—easier to diagnose, to medicate, and to ensure I kept returning—than actually digging for the truth. Maybe I didn’t communicate my symptoms, the thoughts in my head, and what I was going through clearly enough? Or maybe, he just saw a female sitting in the chair and therefore the possibility that I might be autistic never crossed his mind.

For more than twenty years, I lived under the false belief that I was bi-polar. If nothing else, it fit what I perceived to be my Jekyll and Hyde persona. But that was about it. During those years, I took meds on and off, but spent more time unmedicated because I never really felt the meds helped, plus, I despised every psychiatrist I ever saw. None of them ever saw me on time, and having to wait for sometimes as long as an hour to be seen always set off a meltdown. Instead of seeing that as a symptom of something other than bi-polor, I was repeatedly told that the shrink was busy and I should be patient. I gave up. If my mental health wasn’t a priority to them, if they felt entitled to act in a way that was triggering to me, well, they weren’t exactly helping me, were they? 

About eight years ago, things got really bad. The constant noise—leaf blowers, snow blowers, loud neighbors, construction equipment—that pervaded life in our condo complex had me in a state of constant meltdown. The environment was toxic, the noise was literally destroying me. Noise, especially loud motors, cause me physical pain and the longer I am subjected to it, the more intense the pain becomes. In desperate need of help, some relief from the agony, I started seeing psychiatrists again. Each time I told them about the noise, about how much it hurt, they told me I obviously suffered trauma as a child and all they wanted to do was hand me a script for bi-polor. Not one trained professional ever said, “That sounds like an extreme sensory issue.” Not one trained professional ever suggested screening me for something other than bi-polor.” Is it because I was a woman? If I had been a man, would at least one mental health professional along the way have paused to reconsider my diagnosis? I wonder how many men who discuss noise sensitivity issues with shrinks have their comments brushed aside with a dismissive, “It stems from trauma.”

Then, last year, once we started seeing a marriage counselor, I started to doubt my bi-polar diagnosis. Our counselor agreed. She saw the depression, I spoke of it often, but the mania seemed absent. Even the anger, which the shrinks all saw as a manifestation of mania, did not fit the criteria for manic episodes. The bursts of anger, the uncontrolled bouts of fury, sparked too suddenly and diffused too quickly to be mania. So if not bi-polar, then what? That’s the question that was burning in my brain when I went out to eat with friends on the last day of the school year. For many older undiagnosed women who have muddled through life with difficulty, their moment of clarity often comes when a child is diagnosed with autism. They look at their child, their quirks and struggles and they see themselves. Suddenly, a lifetime of not fitting in, of being different, of struggling to do things everyone else found easy, makes sense. For me, that moment of clarity came from a colleague, a teacher—and not even a teacher trained to work with or identify students with special needs. How is that a friend was accurately able to assess my disorder when trained professionals were unable to do so? I suppose the answer is rooted in my gender. It took a friend to look beyond the gender markers and assess my sensory issues for what they were—a clear indication that I am autistic. 

I am part of a lost generation. A generation that struggled unnecessarily because we were ignored. A generation that neglected to reach their potential because we had the unfortunate luck of being born female in a world that focuses on boys. My entire life I have failed at nearly everything I’ve pursued: jobs, sports, careers, friends, relationships, and so much more. I’ve compared myself with peers and wondered why they always seemed to catch a break and get ahead while I didn’t. Even when I had more talent, more determination, and more skill, they outplayed me, landed the contract I desperately wanted, or caught the eye of someone influential, someone who helped them carve a path to success. In real life, my ability to slink into the shadows and blend into the landscape worked against me. I have failed, not because I’m not smart enough, capable enough, or talented enough, I have failed because the neurotypical world is not designed for autistic people, and without the proper support in place—because girls and women were not identified early on—I lacked the tools to navigate it properly. Now that I FINALLY know what’s wrong, I can begin to acquire the skills I need, and perhaps function better, but at my age, it’s too late to start over. It's too late to have the life I once dreamed about. It is too late to undo all my mistakes and rebuild all that I have destroyed. The best that I can hope for is a slightly brighter tomorrow.