Finding out I’m autistic at 30 years old
“I have no doubt you are autistic Madam”, said the doctor. And suddenly all my stress flew out the window. It all started when I stumbled upon an article. As a feminist, I’ve always been very interested in the gender data gap, but I never thought I would be a victim of it.
The article said that the signs of autism most people are aware of are actually male traits, because research had only been done on boys and men. In women, it presents differently, especially for the profile they used to call Asperger’s, now part of the spectrum, that is a form of autism with strong language skills and intellectual ability. As women in our society are expected to be social, autistic women unconsciously learn what most people get naturally in order to appear “normal”. This translates to “camouflaging” or “masking”, and researchers are only now starting to understand what this means. Camouflaging involves trying to manage eye contact, using prepared phrases in conversations, and many other conscious or unconscious techniques. Autistic women are also often highly empathetic, feeling too much without knowing how to express it. Camouflaging comes at a very high cost: exhaustion, energy drain, meltdowns due to social overload, anxiety, and more.
My journey
After reading that article, it was like I was seeing myself for the first time. I spent hours and hours researching autism, and specifically looking for female traits. This checklist was particularly helpful to get a clearer picture and I kept seeing myself more and more in those articles and books. By the time my first assessment appointment arrived I had read 6 books on autism and countless articles. It had become my special interest. So many things seemed to make sense that I was more afraid of the doctor telling me I wasn’t autistic than the opposite. What would I do if all these answers to questions I hadn’t even asked myself consciously went away? My whole life I felt weird, too much, inadequate and finally I was finding out I was just wired differently.
The diagnosis was such a relief for me, and it was also the beginning of a new chapter. It was like nothing had changed but everything had changed. I was seeing everything through a new lens. After having spent 30 years “masking”, I realize that I now have no idea who I am behind the mask. I have to learn to listen to myself, and to stop hiding my difficulties. I’ve started to look back at my life and I can now see some choices I made in a new light. In my 20s for example, I had an eating disorder, which I now know is very common in autistic women. I had also never stayed at a full time job more than 6 months until I switched to computer science and I now realize that all my previous jobs — barista, hotel receptionist, coordinator — involved talking to customers. I was lucky to discover code a few years ago because it suits me so much better. I’m now happier in my career, I love coding and it involves a good deal of working alone, which I like. One of the first things I did post diagnosis was telling my team, because I felt like the people I worked with everyday had to know, that they should be part of my discovery process. They were very supportive and interested in learning more about it.
Moving forward
Knowing I’m autistic has also allowed me to be more compassionate with myself. I accept that this world is exhausting for me and that I will never be able to do anything after work during the week or on Sundays. Working a full time job in an open plan office requires 200% of my energy, so after work I have to go straight home and indulge in my “special interest” which for me is TV shows. When I watch most of these TV shows, I’m not just watching like someone else would — I’m living it, I’m jumping into adventures and highly emotional journeys, where characters feel as real to me as actual people, if not more. As this great article describes, “ these interests feed the autistic mind and soul. It is what calms, focuses, and brings pleasure. It is a way that [we]decompress from a stressful day; a way to shut out the world for a while in order to refocus and recharge.”
Now that I have a framework and words to understand why I feel completely overwhelmed at work sometimes, I can start listening to myself and take the time to pay attention to my own feelings. I have frequent headaches that are most likely caused by artificial lights and noise. Wearing sound blocking earplugs helps with the noise (although it only reduces the volume but doesn’t remove the noise). I’ve also learned that it’s important to do one thing at a time because I’ve noticed I get intensely stressed when I’m working on several things at once. I’ve been able to identify an autistic meltdown and it was such a relief to be able to understand what goes on when that happens and to know that I can’t suffer through it but I have to isolate myself until it passes. All my life I thought I just cried for no reason, but now I know it’s one of the signs I’m having a meltdown. The chaos of everyday life is now a bit easier to understand and I know that routines and organizing make me happy so I fully accept it. Dealing with unexpected change is a major stress inducer as well and I’ve tried to identify that feeling and to avoid being overwhelmed. Armed with my newfound knowledge, I can now start to adapt my work and home environments to suit my sensory issues better and avoid meltdowns.
Identifying my strengths
But knowing that I’m autistic is not just being able to name difficulties. It’s also helped me identify my strengths. Like many of my autistic peers, I am honest, reliable, genuine, passionate, trusting, and highly punctual. I can organize, categorize, analyze and plan like no one else. With sensory issues (especially noise and light) in check I can be exceptionally focused, which served me well during the hours and hours I spent researching and writing 3 thesis statements for my masters at university. I’m a fierce advocate of feminism, diversity in tech and body positivity, and I can’t stand unfairness and injustice.
Years of observing, studying people (on my own and then through a sociology degree), mimicking, and camouflaging have taught me a detailed understanding of people and I get things that others miss, I figure people out. I’m literally wired to be an out of the box thinker. I can spot patterns like a hawk, my brain is always observing, categorizing and finding similarities between things. This is called local processing bias and is a common trait in people on the autism spectrum: we tend to see the parts rather than the whole, which is a great strength because it comes with the ability to derive overall meaning from a mass of details. We can connect dots in ways that other people may not perceive or register. Unlike most neurotypical people, I can’t easily apply a vague concept to a concrete example but give me the examples and I get to the big picture from it.
A new beginning
This diagnosis turned out to be the thing I had been waiting for all my life without knowing it and I’m glad I found a name, a community and a lot of support. Autism is not something I have, it’s something I am. A new journey of self discovery has started and I can’t wait to see what it results in. I’m certain I’ll discover so much more about how my senses and brain work. My family, friends and coworkers will get to know and understand me better. And above all, I now know that I’m not weird or wrong, I’m just different, isn’t that beautiful?
November 2019 update: I’ve created a presentation on autism that anyone can use to get more information or share with other people. Contact me if you want it in a different format!
