This post is part of an Autism Acceptance Month Challenge on Tumblr that got a bit too long for a Tumblr post. I’ll probably be swapping back and forth between the two platforms for various posts. Follow @strangerdarkerbetter on Tumblr to see everything.
Day 3: My Diagnosis/Discovery Story
Growing up, I always knew I was different. I struggled to relate to my peers and often found myself the target of bullying. I was tormented by many of my peers throughout elementary and middle school, often for the traits that marked me as different. Though I had no words with which to conceptualize my experiences, I knew to my core that I was different in some way.
Without any framework to understand why I was different, I came to believe that there was something wrong with me. In middle school, I began researching mental illnesses. I knew there was something wrong with me and I wanted to find answers. Through my research, I became very familiar with a wide variety of mental illnesses, but struggled to find my answer.
When I was 14, I was diagnosed with depression and started treatment for it. I already knew that I was depressed, but it was good to have it recognized, though, at the time, I didn’t really understand what depression encompassed.
At 15, I had my first hallucination (at least, the first that I recognized as such) while on a school bus going through the Lincoln tunnel (to this day, I still hate having to travel through any long tunnels). This began a new journey in my psychiatric care. Over the next few years, I struggled with hallucinations, delusions, and severe mood swings. However, my diagnosis remained Mood Disorder NOS throughout this time. I was frustrated by the lack of answers and the refusal of my care team to pursue a more specific diagnosis. Even when I was hospitalized twice at age 17 for severe hallucinations and paranoia, my diagnosis remained NOS.
Throughout this time, I continued my research. As I read about schizophrenia, I found partial answers, yet, if I dared to mention this near my mom, I was quickly shut down and told that I’m not schizophrenic and I shouldn’t talk like that. In my core, I knew schizophrenia wasn’t quite right, but I struggled to find the right answers.
While I was in college, my psychiatrist stopped taking outpatient appointments as she began to focus on inpatient care. As a result, I had to start seeing a new psych. He was awful. During each appointment, he would attempt to summarize what I had said but always got it wrong. I felt unheard and dismissed and grew more and more frustrated as my mental health deteriorated.
After a few months, and no closer to an answer, I was sent to a new psychiatrist for a second opinion. This made me feel really fucked up. Like, how fucked up does your brain have to be to need a second opinion from a psychiatrist?? (I feel differently now, but, at the time, it was devastating).
However, by this point, I had learned of schizoaffective disorder. After researching it extensively, I was positive that this fit my experiences.
When I saw the new psychiatrist, we met for an hour, during which time I explained my full psych history as well as what I was experiencing at that time. At the end of the appointment, he diagnosed me with schizoaffective disorder.
It was incredibly validating to finally receive my diagnosis. For the first time, I felt like my struggles were being taken seriously rather than being written off due to my age. I finally had my answer.
Yet, deep inside, I knew that this didn’t explain everything. There was still a piece of the puzzle missing. However, now that I had an answer that explained a lot of my experiences, my search for answers decreased.
My diagnosis came during the time I had taken off from college due to mental illness and in the midst of an abusive relationship. A few months later, I ended things with my ex after realizing he had raped me. While trying to recover from these experiences, I was raped again by a stranger. This sent me into a downward spiral that would take a few years to get under control.
When I was 25, I came across something describing Asperger’s in women and recognized myself in what I read. I talked to my husband about this and his response was along the lines of “well, duh!”
Thus began my explorations of autism. I began by reading about Asperger’s in women. Over the next few months, I read hundreds of first hand accounts of the autistic experience. I read blogs by Autistic women from beginning to end. I quickly came to learn about the issues with the Asperger’s label and started looking more into ASD. The more I read, the more confident I became that I was Autistic.
After a few months of research, I tentatively ventured into the Tumblr Autistic community. I was amazed at how at home I felt amongst other Autistics. Finally, after a quarter of a century, I had found my answers. There wasn’t anything “wrong” with me, I just have a brain that functions differently than is typical.
Discovering that I am Autistic provided me with a framework with which to understand my experiences. Suddenly, my struggles to make and keep friends, my struggles to verbalize my feelings, the episodes of intense distress and crying (meltdowns), and so much more began to make sense.
Last year, about two years after discovering that I am Autistic, I worked up the courage to talk to my psychiatrist about my suspicions. She agreed that I am Autistic and provided me an informal diagnosis. At this point in time, the cost of a formal diagnosis via neuropsych eval is too costly to consider. Further, a formal diagnosis does not really have any value to me. As such, we decided not to pursue things further. Maybe, as time goes on, that will change, but, for now, I’m comfortable with my self-diagnosis that is supported by my psychiatrist.