There’s a limbo between suspicion and diagnosis. That’s where I find myself as I write these words.
Over the course of a lifetime, particularly over the past few years, I came to conclude that I may be autistic. I didn’t have a particular a-ha moment and never felt sure about it. I had moments of doubt where I told myself I wasn’t autistic, that I just felt lost and was grasping at straws. I had other moments where I believed me being autistic was the most logical conclusion to reach after considering my full history right down to descriptions of my first moments in the world. I felt like Schrödinger’s Cat, in a box believing I am autistic yet also at the same time not autistic. That was my paradox, doubt and conviction existing simultaneously; I was autistic, I was not autistic. The more I thought about it, the more I came to see that I had been in this box my entire life.
Schrödinger’s Kitten: my earlier years growing up as the family oddball
I never fit in socially in spite of making tremendous efforts to learn how to conduct myself in an assortment of social situations. I had many odd preferences and aversions and was often told I was picky or over-sensitive. I spoke with honesty and was often reprimanded because my bluntness was considered rude even though my intentions were kind. It frustrated people close to me because I took jokes literally and apparently ruined them. The message I repeatedly received from family and peers was that there was something wrong with me and that I was the one failing to fix it. I tried so hard to “fix” myself but failed over and over again. Sometimes I spent hours a day trying to improve my coordination or my “sloppy handwriting.” I tried harder to understand jokes and sarcasm by memorizing as many jokes and sarcastic phrases as possible, I weighed my words carefully to be less blunt and I stopped speaking my opinion. I could never tell jokes with proper delivery but I did at least learn to recognize more and respond appropriately to a lot of them. I practiced reciting phrases, I even practiced walking. I learned about and studied anatomy. I took classes related to body movement and in engaging with others.
Those studies that aimed to fix my differences were my focus for decades of my life. I pushed myself to succeed in correcting as many things about me that were so unacceptable to my family as I could. I really didn’t find all those things previously mentioned to be upsetting when I gave it thought but I was deeply troubled by how upset others were about me. All those years ago, I didn’t even know I was in a box but I felt it nonetheless. Exhausted from decades of this, I gave up trying to fit in and that ended up being the best thing for me. I began to slowly understand that I wasn’t broken, just wired differently. I did not yet connect this to autism. I just embraced my nerdy and geeky side and found friendships in others who did the same. It was still a long while before I noticed that almost all of my friends were autistic.
Growing toward acceptance
The process of embracing myself for who I am happened in stages rather than as a result of a sudden epiphany. There was overlap. I began accepting certain things about myself even while still trying to fix others. Team sports was one very early example. My family was athletic and my siblings excelled at team sports. They expected the same of me. Allowing myself to let go of that was a tremendous relief and probably helped plant a seed for accepting more of my differences in the years that followed. In the meantime, I still practiced reading and speaking with more inflection and expression, I read fashion magazines and tried to dress fashionably. I engaged in other physical activities to camouflage my other athletic shortcomings. I tried fitting in with the right crowds that matched my siblings’ social lives. I went to therapy, a lot of therapy. Ultimately, it was many years after facing my team sport deficit before I let anything else go. My steps toward self-acceptance were small and spread out over very long periods of time.
It would be even more years later before I learned enough about autism, especially how it often presents differently in girls and women, to realize it fit everything about me. I kept my suspicion a secret for a few more years. In time, for a variety of reasons, I decided to pursue this possible reality more seriously. I read more, I took self-assessment tests, I talked to others in my situation. I found that self-diagnosis was largely accepted within the autistic community. I discovered new possible interpretations of my own past experiences. I also doubted myself. A lot.
Am I really a cat in a box?
I found myself in a strange place where I did not know what I feared more, having confirmation of my suspicions or officially being told that my suspicions were incorrect and that I was just a weirdo who fit in almost nowhere for no reason. I needed to prepare myself for either outcome. I had questions that would need answers.
If I was indeed autistic, what was my best way to move forward in my life, which had been so derailed and stunted from trying to “fix” what wasn’t broken? What would I do with this information that would come to me at this later point in my life? I would probably need help to peel away all the layers I’d built over myself in order to fit in and please those around me. I would have to figure out who in my life should have this information and, I suppose, who shouldn’t.
If I wasn’t autistic, what was I? Was there something weird and unhealthy about having so many autistic friends and so few neurotypical ones? I never consciously made friends with people based on whether they were autistic or not and didn’t know if it had any significant meaning. I at least concluded that, significant meaning or not, I was lucky to have friends who accepted me for me. Other questions persisted. Were these traits broken parts that were indeed fixable things after all? How could I have failed so spectacularly to fix myself after so much effort? I wondered if I’d be left with no official answer to why I had been a lifelong misfit. What would my path forward look like if it was not the path of an autistic? I imagined that it would involve finding ways to accept myself even without explanation. Either way, I knew I’d best move forward by letting myself actually be myself.
It was time to get answers and uncover parts of myself I’d hidden away. I was always the way that I am yet not recognized and accepted and therefore perceived and treated as if I was merely broken. Even I saw myself this way, as broken. My own conclusions and self-diagnosis were not enough to fully convince me. I still held onto doubts and could not let go of old beliefs. I was trapped and not moving forward for as long as I lived in this box. I did not want to remain in this state of dual realities existing inside my mind. Schrödinger’s Cat was imaginary, the subject of a thought experiment that remained simultaneously in opposite states of existence in an unopened box.
But I am real, and decided to open the box.