How it all began

It was on July 13 2019, 8 days before my 30^th birthday, that I learned that I’m autistic. My whole world changed on that day, even though I didn’t realize it yet. In a sense, I was handed the keys to understanding myself and my life in a way I never had before. I had known that I was different for as long as I can remember, always felt that way, although I couldn’t really explain how or why. Now I finally knew: I am autistic, my brain works differently from that of most other people. Also: I am not alone, there is an entire community out there of people like me.

All my life I had been focused on doing well in school, starting from when I was a kid up until I was in college. I was a true perfectionist and demanded the best grades from myself. It seemed to go well for a very long time, my grades were high and I enjoyed learning. But then I went to college. After the first year, every consecutive year went a little more difficult. My health deteriorated and my energy and focus dropped significantly. I could  spent an entire day studying hard while only having read 8 pages at the end of the day. That’s how hard it became to concentrate. I had to reread paragraphs and even sentences so many times that it became incredibly frustrating. As my college years passed by, it also became more and more difficult for me to start doing my homework, like writing my research papers. During my master’s program I often couldn’t write a paper until it was late at night with the deadline being the next day. It was infuriating and incredibly stressful. I was convinced that I was a procrastinator and that I should do better. I could do anything I wanted, except what I really needed to do: my homework. It took me 3 years to finish this 1-year program, though – the perfectionist that I was – I did make sure to earn extra credits.

An important lesson that I have learned since is that I was not, in fact, a procrastinator. There was no metaphorical procrastinator monkey jumping around in my brain, as I had read about while researching procrastination. What it truly was, was executive disfunction. This meant that it was nowhere near my own fault, as I had thought. It was just a thing my brain did without me having any influence on it whatsoever. I also learned that I had asked too much of myself throughout my academic career, which was why each college year was more difficult than the last. This also explained, in part, why I fell into a dark hole after graduating. I had asked so much of myself and when the pressure came off and I allowed myself time to breathe, it all came crashing down on me.

I also learned that school had always been that which gave structure to my life. When that disappeared, the main part of my life did as well. I suddenly had all this free time and no structure at all. Apparently the structure that school had given me had been extremely important for my functioning and well-being. It had prevented me from falling down a hole sooner. I already hadn’t been feeling well during the last years of college, but the structure it offered me had kept me on my feet. This was also in part because I hyper focused on my studies, without knowing I was doing it. Because of my hyperfocus, which I learned about as I learned about autism, I hadn’t really noticed how I was actually doing. I knew I was tired, but the perfectionist in me also knew I had to power though it to get good grades. I realize now that perfectionism might have added to my hyperfocus. I wasn’t content with getting 7’s or even 8’s. I wanted 8.5’s and 9’s, which was why I kept powering through, often throughout the night up until morning. Then, without going to bed, I took the train to Utrecht and went to class.

When college, structure, and my hyperfocus disappeared, I fell into a depression. I couldn’t do anything. I wanted to work, to find a job, but I couldn’t manage. During this period, I saw several therapists and at times I felt a little better. But it would never last long. I had read that research showed pets were extremely helpful for depression, so I asked my parents for guinea pigs. We had had guinea pigs for almost my whole life but not during the past years. After consideration, my parents agreed and we got 2 babies, sisters we named Loki and Princess. As things went worse again, they and my family helped me to keep trying. Eventually, though, I couldn’t take it anymore. I hit rock bottom and couldn’t get back up again. All I wanted was to be with my grandparents – Opa Gerrit, Oma Doortje, and Opa Frans – and uncle – Oom Frans – in heaven. I didn’t try anything, but that was what I wanted. I didn’t see any other options anymore.

Our doctor referred me to the emergency mental health service, where I went to the same day. After a few weeks and many, many conversations with several professionals, they told us they thought I either had a personality disorder or autism. We were very surprised at first, but when we researched it at home, we became sure that I was autistic. After loads of tests, and almost 3 years after graduating college, we were told that I’m autistic. They also said that my future was unsure. It was impossible to predict whether I would get the future that I had worked so hard for. This was a huge blow, and it took me some time to put it behind me. However, I had to prioritize getting better and learning about autism and myself before anything else.

I made sure to learn as much about autism as I could, through psychoeducation as well as my own research. Twitter proved to be very helpful. I found there were many accounts by other autistics, describing their own experiences and trying to help others understand themselves better. It was there that I learned about the large percentage of autistics being lgbtqia+. Some accounts concentrated on different gender identities, like non-binary. The more I read about this, the more things started to make sense to me. I felt like their experiences of being non-binary described me too and I dove into research mode. After extensive research I could say with confidence that I am indeed non-binary, and more specifically agender. I decided to write about it as a way of coming out to my family. That was an easier way for me to come out rather than just telling them in a conversation. Not because I was afraid of their reactions, but because I am simply more fluent in writing than I am in conversation. I explained what being non-binary and agender meant, how it felt for me, and how I had come to realize that I identified as such. My family was very supportive of me.

I am still learning more about my autism to this day, and I don’t think I’ll ever be done learning about it and myself. As I continued learning, I came to realize that I am not only a part of the lgbtqia+-community because of my gender identity, but also because of my sexuality. I had been thinking a lot about it, about how I feel about relationships and romance, and everything that comes with it. And even though I had been thinking for years that I was supposed to have a relationship (everybody else seemed to be in one, so it must be how it should be), I realized that wasn’t what I wanted for myself. That was a huge breakthrough for me. I always felt like I wanted to, but came to realize that I didn’t want to, not really. I just felt like I should, like it was what you were supposed to do according to society. What I wanted was something different entirely. I didn’t want a relationship and romance, and wanted nothing to do with all that came with it. Not only was I asexual, but also aromantic. This made a huge burden fall off my shoulders.

My life has changed significantly since my autism diagnosis. I have learned so much about myself and understand myself so much better. I’m still learning new things about myself and autism. It’s such a wonderful feeling knowing you are not alone in feeling and being different, that you are part of the autistic community. Sometimes I still stumble upon characteristics which I thought were just me but turn out to be part of my autism. It makes me feel like I’m not alone, because others do or experience the same thing.

I still have many ups and downs, but the downs are usually less deep than they used to be and I can handle them better. I can now look forward more confidently and figure out what I want to do without asking too much of myself. Ever since I was a kid, my future plans have jumped from one thing to the other over and over again. I don’t remember them all, but I do know that I once wanted to be a hairdresser, a fashion designer, and a veterinarian. I even chose to enroll in the bachelor’s program Language- and Culture Studies because you could choose between 15 programs after your first year, and I had no idea what I wanted to do yet. Eventually I chose the program American Studies, of course because it interested me but also because it offered quite the range of career prospects. My future dreams still changed several times after that, until I landed at a career as an editor. I found that I am quite skilled at editing texts and at writing, plus I really enjoyed it. This dream lasted longer than any other. Until…I realized just a few years ago that I’d rather write texts myself than work on other people’s texts. I simply enjoy writing too much. I think I jumped from one plan to another because my interests changed so often, which can also be explained by my autism. Having special interests is a part of being autistic and they often come and go.

I really hope this one does not pass. I’ve loved writing and doing research all throughout college and maybe longer (I can’t really remember). I do know that I’ve loved learning ever since I was a kid. After a long search I have found a new workplace, one I have a very good feeling about. I will be doing research, write, and record podcasts. I am so excited! It feels like my hard work has paid off. All the little steps have helped me get this far, as well as not giving up even though things got hard and I felt like I couldn’t go on anymore. Of course I could never have done it all by myself. I have an amazing support system and have had help from a lot of professionals along the way. But in the end they can support you and give you tips, but I had to do the hard work myself. Yes it is difficult, yes I wanted to give up sometimes, but the downs pass and the little steps really do count.