An Unoffical Diagnosis

After twenty years of marriage—for reasons unnecessary to disclose here—my spouse and I decided to see a couples therapist. My previous attempts at any sort of therapy were extremely negative. Mental health providers in general were notorious for not listening to me and trying to shove medicine down my throat. As a result, I had long ago given up on them. Kimberly was different. Kimberly was blunt, especially in her metaphors and analogies, but she cared. I quickly learned to trust her in ways that had been elusive with others in her profession. As a result, I was at ease in her office, comfortable enough to be honest, raw in ways that I generally reserve only for writing. I wasn’t there for a diagnosis, only a path forward in my marriage.

Two months after therapy began, the school year ended. On the last day of the year, I went out to lunch with a friend of mine and my co-teacher, a woman with whom I had developed a close working relationship after a somewhat tumultuous start. While we were eating, I made a random comment that I had come to the conclusion that something was definitively “wrong” with me. I had been diagnosed years earlier with bipolar but that diagnosis never felt right. Still, I was extremely aware of the fact that my brain did not function the way other people’s brains did. Closely examining some of my behavior, I began to question if I might have OCD. 

My co-teacher shook her head, “I don’t think it’s OCD. I think it’s ODD.” Oppositional Defiant Disorder was something we were both familiar with in our students. Essentially, it is a disorder in which people exhibit hostile, angry, or irritable behavior, especially when an authority figure instructs them to do something. Needless to say, those students often exacerbate the challenges teachers face on a daily basis. I knew I could be difficult. At times, I could be downright unbending and impossible to work with, which was why my co-worker and I didn’t always have the most copacetic relationship. My rigidity and unwillingness to try new things exasperated her on numerous occasions, so when she—not so gently—suggested I might have ODD, I did not immediately dismiss it. It would definitely explain my inability to play nice with those in authority, such as the administrators, but it didn’t explain everything.

“What about the noise?” I asked, referring to the fact that loud noises, especially buzzing sounds, like the kind made by lawn mowers and leaf blowers, caused me intense physical pain. My aversion to the noise, my insane emotional reaction to it over extended periods of time, fit neither an OCD nor an ODD diagnosis.  

That’s when my friend leaned in, set her elbows on the table, and very gently asked, “Have you considered that you might be autistic.”

The room became very still, and for a beat I think I forgot how to breathe. Autism was certainly not something I ever considered. I taught autistic kids, and I was nothing like them. When society thinks of autism, they think of the non-verbal kids who can’t function in a regular classroom. Or, the kids who need so much support that one wonders if they could ever be independent. The kids who fit the worst of the stereotypes because isn’t that how we as society categorize people, lumping them into groups that highlight the more severe attributes in a subsection of the population, never the best.

But then I took a step back and mentally tallied up the things I knew to be true. My favorite students were on the spectrum, and I liked them in part because we spoke the same language. Ever since I could remember, I struggled with interpersonal relationships. I had few friends, and absolutely despised situations in which I had to interact with strangers. I had come to believe I suffered serious social anxiety, but what did I know? I disliked comedy, especially stand-up, predominantly because I didn’t understand it. How many times did I laugh at a joke not because I found it funny, but because everyone else was laughing and I didn’t want to appear stupid. My interests were not broad, but an inflamed passion for writing, books, and history could be painted as nerdy, not necessarily neurodivergent. As for my sensory issues, they reached beyond just noise. Bright lights gave me headaches and there were certain clothes—like jeans—which I would not wear because the fabric was too uncomfortable.  And finally, there was my rigidity, my inability to break from a pattern, such as my daily schedule, without feeling extremely overwhelmed. Was it enough to add up to place on the spectrum? I had no idea, but it was enough to give me pause, enough so that later that evening when I was sitting with my spouse and our therapist, I recounted the conversation.

When I finished “joking” about the diagnoses, Kimberly shook her head, “You don’t have ODD. If you did, you would be even more impossible to deal with.” 

I creased my brow, not sure how I should interpret that. “But I must have something,” I said, stuck on myself and my own issues that were increasingly being brought up in regard to my marriage. 

“Do you want to know what I think?” Kimberly asked and I nodded vigorously because even though she isn’t licensed to diagnose, she was educated in the field and could perhaps enlighten me, even a little, as to why I was finding it more and more difficult to function in the real world. “I think your friend might be right.”

“You think I’m autistic?”

“I think that you might be on the spectrum, and even if you don’t hit enough criteria in the DSM, your brain still functions as if it belongs there.”

“How can I be autistic” My brain snagged on the label and I struggled to move beyond it. “I make eye contact.” But even as I said it, I was aware of how forced it was. My dad’s voice was still in my head, I could still visualize the much younger me standing next to my father as he instructed me to look at whomever I was speaking to. And how often did I look away—even now—unable to maintain eye contact and needing a break from the intensity of it. 

“It’s the way your brain processes your environment. You experience the world through a different lens, which is in part why” she paused to deliberately look at both me and my spouse, “you two are so bad at communicating with each other.”

Two days later, I left for a ten day Boy Scout trip with my son during which we spent six days hiking in New Mexico. If you don’t want to think about something, if you don’t want to believe something is true, a long multiday hike is not the way to go about it. During the first three days there was a great deal of down time. I tried to read the book I brought, but it was too easy to fall down the rabbit hole of online research. I combed website after website learning as much as I could about autism, comparing what I read to myself. The picture that started to emerge was disconcerting. 

On day four, I put my phone on airplane mode and escaped into the wilderness with the scouts. Disconnected from the world, with little to do but hike and enjoy the semi-solitude, I had more than enough time to think, to allow my mind to wander and view the events of my life through this new lens. I wanted to come up with a mental list of all the ways in which my marriage counselor was wrong. Instead, a new perception of myself started to emerge, one that made sense once I plugged neurodivergence into the equation. 

Autism had never been on my radar, nor had it ever come up in conversation despite my numerous encounters with mental health professionals. I was too high functioning to raise flags in my youth and mental health professionals were too busy trying to shove medicine down my throat to bother with an accurate assessment. Also, autism does not manifest in females the same way it does in males, and no surprise, girls were ignored for years while specialists focused their research on boys. We still live in a society that prioritizes men over women and boys over girls.

I am angry that it took me this long to understand why my brain doesn’t function “normally.” Fifty years of my life were spent in isolation and pain and no one, despite the money I paid them, could tell me why. In my childhood, I always felt as if I were on the outside peering into a world much happier than I ever was. Everyone else made friends easily, but I can’t remember a time when I didn’t feel awkward in the company of others. As I got older, I followed the script my parents gave me, trying to carve out a place for myself in a world that always felt foreign. I did the best I could, but I never really did what I wanted to do because my insecurities defeated me time and time again. 

For years, I marveled at how competent other people were, how they could rely on themselves despite all sorts of adversity, but simple tasks defeated me more than I was ever willing to admit. I became semi-adept at finding ways to have other people execute my plans because I didn’t have the skills to do it myself. Most of the time, I didn’t even know where to start. I can’t even hold down a job, predominantly because I never really understand the expectations. What specifically am I supposed to do? How am I supposed to do it? Also, my interpersonal skills suck. I never did figure out how not to be combative with authority figures. Therefore, arguments with administrators have almost always led to my demise. Most hurtful was that no one ever believed how severe my noise sensitivity issues were. And my meltdowns—tempertantrums as the rest of the world, including my parents and spouse, called them—were epic, because I was overwhelmed and my nervous system was short circuiting and I didn’t have the tools to deal with it. 

It wasn’t until I was on a bus, somewhere in the middle of Colorado with the Boy Scouts, that I learned the term “masking.” According to the National Autistic Society, “Masking is a strategy used by some autistic people, consciously or unconsciously, to appear non-autistic in order to blend in and be more accepted in society.” I may have failed in many facets of my life, but I have always been—thanks to pressure from my parents—a fantastic student, so it’s not really surprising that I excelled at masking without realizing I was doing it. In essence, I was smart enough to appear normal enough, smart enough to glide under the radar even when I was actively searching for answers, but I was not smart enough to actually function successfully in life.

I owe a great deal of gratitude to my friend who “diagnosed” me. My marriage counselor probably would not have without the prodding because offering any sort of diagnosis at all is beyond the scope of what she does. Actually, an official diagnosis is proving difficult to come by. Most places only test children, and the places that test adults are limited in their hours and/or the insurance they take. I am not in a position to be able to afford $3,000 out of pocket. The cost of the test seems absurd, but I’ve come to expect no less from the mental health services in New Jersey. It would be nice if we lived in a society where doctors and medical practitioners actually cared about the well being of their patients and clients, but fuck, it’s America where people don’t give a shit about you unless you can pay a pretty penny for their services. 

Since I lack an official diagnosis, I’m not really sure where that leaves me. But is an official diagnosis necessary? I’ve dealt with this the same way I deal with everything—by reading. I read blogs and online articles, educating myself and the more I read, the more the pieces of my life make sense. The more I understand myself. It's like I spent fifty years in a foreign city—where no one spoke English—trying to find my way around without a map or GPS. I was trapped in a maze with nothing to guide me so that I repeatedly walked down the same dead end streets unable to navigate my way to where I needed to be. But now that I have a map, the streets suddenly make sense. I understand which roads to avoid and which ones are better traveled during the day. The city is still confusing, and I still get lost, but the map ensures that I at least have some sense of where I’m headed so that I don’t end up going in circles.