I am autistic. Hi, I am autistic. One more time, this time more slowly… My name is K, and I am autistic. As alien as it sounds, hearing myself say it feels familiar and authentic. It has only been a very short time since my diagnosis, but I have found more clarity than in the past four decades. But how did I get here?
As far back as my memories go, I have heard “you are too sensitive, blunt, rude, complicated, emotional, unpredictable, and unpleasant to be around”. I was also told that I didn’t focus enough in school, was not paying attention, was a procrastinator, was disruptive to others, and did not live up to my potential. I got very excited about something, but after a few days or weeks, lost focus and fixated on something else. I was rejected because people felt uncomfortable around me, and I distanced myself from others because I felt uneasy about my behaviors that just didn’t seem to fit in. In my early 20s, I was diagnosed with depression and, later, anxiety and PTSD. I tried different medications, worked with therapists, read books, and, despite investing all my willpower, I just didn’t fit in. At times, in my mind, I thought that if I couldn’t change my emotional responses despite my best efforts, and my behavior made others so uncomfortable, it would be better if I was no longer here.
The Impact of a New Workplace:
A little over a year ago, I embarked on a new career, and for the first time, I was working in an office, in a cubicle. I had scored a dream job and was more than excited. At first, I worked in a corner with a solid wall behind me; I have always found safety in sitting up against a wall. I was stressed about the noise in the office and easily distracted, but I could finish all my work as expected. Nobody noticed anything.
My coworkers didn’t know that I often stared at my screen for hours in the office, unable to function, and then did my work at night at home, where it was quiet and there were few distractions. I loved my job, but I was getting more and more exhausted. Then, I was told to move my workspace to a new location at the end of the summer. I didn’t want to say anything about how I feared it would impact me since I was used to not being heard all my life.
With the move, my wall was gone. I was in the middle of the office, protected only by flimsy cubicle dividers, sounds, and noises coming from all directions. I was getting far less done, became very distracted and unable to focus, walked and talked in the office while being internally aggravated, and was close to meltdowns on most days. Some meltdowns did happen, and I hid in the office bathroom, curled up on the cold floor. Fortunately, nobody ever had to use the bathroom during those times because we only have one office bathroom.
It was not only work, I also couldn’t motivate myself to participate in activities I had loved in the past, and getting started on housework was nearly impossible. My dogs and cat kept me going; they needed me, and I needed them. I was falling apart, and all the Cognitive Behavioral Therapy work I had done was no longer sufficient, nor were the meds. I knew I needed help.
A Move to Find Answers:
At the end of September, a little over a month after I was moved to the new workspace, I met with a new therapist and explained what was bothering me, what I wanted to change, and the approaches I had taken over the past two decades. After listening to me ramble, she looked at me and asked, “Have you ever been tested for ADHD?” Confused, I looked at her and said, “No, why?” She said to me that everything I had been describing sounded like ADHD to her, and she would be surprised if testing proved her false. I thought, “What’s the harm as long as health insurance pays for it?” And maybe she is right, and all my problems would be fixed with an ADHD diagnosis and a few pills. Wouldn’t that be the easiest solution to me being disruptive, bringing drama and disappointment to everyone around me? I would finally be fixed.
Even when living in a densely populated area where tech is booming, and multiple highly-ranked universities are within a short drive, it is not easy to find a provider who will test for ADHD. The universities were either not taking adult clients for testing in their ADHD clinic or didn’t take health insurance, paying $1,000 - $2,000 out-of-pocket was out of reach for me. Another office would test me, but the wait time would have been at least six months, and I am not a patient person, I needed answers now. Another office said, of course, a Physician’s Assistant can see me and prescribe me medication. I didn’t just want medication; I wanted in-depth answers, and depending on those answers, I would take medication that would put an end to my distracted mind. It took three days (eternity) to find a provider where I would “only” have to wait a month to be seen and who would take my insurance (lucky me for having employer-provided insurance; universal healthcare, anyone?). It would be a half-hour drive to the next city, but I was overjoyed.
A month later, the day of my intake interview had finally arrived. I liked the psychologist, which was a relief because I had worried I might not like her or that she would be one of those people who make me very uncomfortable and I can’t be open with my thoughts and feelings. She told me that when I would come back three days later for testing, I would receive a battery of tests, some for ADHD but also some to rule out other diagnoses. At some point, it came up that we might want to look into autism (I thought, not me; surely somebody would have noticed years ago).
Testing day came faster than expected, now my problems would all be solved, right? During the five hours of testing and questionnaires, I experienced a lot of emotions. I got frustrated because I felt that I didn’t do well enough, excited because who doesn't love a good puzzle or word problem, and confused because why was she asking me all these easy general knowledge questions? Once it was over, the waiting game was back on, I would receive the results two and a half weeks later.
I could barely sleep because I just knew the day of the results would be here in the morning, and the world would change for the better immediately, right then and there. I love plans, and having every detail played out in my mind calms me. But then came the appointment, and I was told that my plan and scenario would not play out as expected (ugh, not again).
The psychologist said we would only review the preliminary plan since she wanted to do one more test; her colleague would administer that test. She said that at that point, she was only able to diagnose me with ADHD and complex PTSD. The signs of autism were there, but she wanted to rule out that those symptoms weren’t part of my complex PTSD diagnosis. We talked for over an hour and a half, during which she asked me more questions that could help her confirm an autism diagnosis. I was very fortunate to get a testing appointment with her colleague the following week and an appointment for the final report the week after. The same week of the follow-up testing, I was able to see a provider for ADHD medicine.
Taking Steps Forward:
I opted to start out on a low dose of a slow-release ADHD drug. The impact was life-changing. While it was a little odd being able to focus all of a sudden, it also took away my internal unrest, which I had previously described as anxiety. I could get things done that I should have done months ago. I was laser-focused at work, to the point I forgot to eat or go for my lunchtime walk. In the evening, I was tired and slept through the night even though I started reducing my sleep medicine. I bought myself fancy Loop earplugs and no longer got distracted by my coworkers breathing, eating, or just moving around paper. I wore the earplugs and went shopping on a weekend evening at a big box store, which I dared myself to do just to see if I could. I have to say, it went pretty well (yay for me, boo for my wallet, actually I didn’t buy anything because I was overwhelmed by the options). I was in my own little bubble, walking through the holiday shopping craze, something that had always been too overwhelming.
Then came Monday, and everyone who had been out the week before was back at the office, and the noise level was back up to full volume. I had been so excited about my newly won ability to focus, but the noise was too much, and I had a meltdown. I felt defeated, frustrated, and alone once more because my earplugs and ADHD meds had worked great in a relatively quiet space. Still, once loud conversations were vibrating through the office again, I was back at square one with another meltdown that I could not prevent from happening, not to mention the embarrassment of falling apart in front of colleagues because of such a minor thing (in the allistic world). I was told that noise would happen, and I needed to move on from bringing it up… another gut punch (hello, c-PTSD). Since going over the preliminary report with the psychologist, I had started reading about autism, and slowly, I was getting a hunch that, indeed, that could be me.
A New Diagnosis:
Three days after my meltdown, I received the final report. The diagnoses were there, in writing: ADHD, complex PTSD, and Autism (low support needs). I was encouraged to connect with a therapist, which I did, and I look forward to working with her. I started reading more about autism (hey there, new “special interest”), connected with fellow Still I Run community members who received a similar diagnosis later in life and joined a Facebook group of other autistic women who were diagnosed as adults.
Saying “I am autistic” feels authentic because my life is starting to make so much sense. I started having one-on-one conversations with people in my life and explained that no matter how much I try, my experience in this world will always be different from theirs, and so will my emotional responses. I am not looking for pity or being tiptoed around, but I hope for some grace and patience as I get to understand the autistic 43-year-old woman and figure out what my authentic, unmasked self looks like. Then there is also the whole ADHD thing, but that is something I will worry about later since the meds seem to have it covered for now. I am moving forward with optimism and great hope but simultaneously with many BIG emotions. Here is to learning and new experiences.
I have to say a big thank you to my coworkers, friends and family who have been patiently listening to me ramble as I start figuring out the world and myself.
To be continued…