What it's like to be a woman on the spectrum
What it's like to be a woman on the spectrum
Hi friend,
and welcome to a premier! One of my 2021 goals for this letter is to give space to other voices, so that I can cover more topics where I’m out of my depth. I’m very happy that my friend and former colleague Marrit agreed to kick this series off and give us some insights into a topic that I, personally, had never given much thought before I had met Marrit. I remember that we were driving through Portugal when she casually dropped that she was “on the spectrum”. My initial reaction was:
Until then, my mental image of a person on the autism spectrum was one of a boy sitting in a corner, rocking back and forth, doing some crazy math in his head. You know, like Sheldon Cooper. Definitely not an (seemingly) outgoing and sociable young woman. I didn’t know that autism, especially the high-functioning kind, can present very differently in men and women and that it’s often not caught in girls and women because of, surprise, patriarchal gender norms. The numbers differ, but I read that only one woman for every nine men is diagnosed with high-functioning autism – a crazy gap, which leaves many undiagnosed women struggling unnecessarily. So here’s the conversation I had with Marrit about it.
When and how were you diagnosed? Did the diagnosis change anything for you?
I started the diagnosis myself. I had been reading specifically on the subject when I really struggled with finishing my master thesis at university. It seemed like an impossible hurdle. Afterwards, the most challenging environment was the workplace – and I was lucky to have a manager who helped me to set up workflows that matched my needs. I have also worked with several career coaches. For me, the process really helped to understand myself better and communicate this to the people around me.
How does (or did) autism manifest in your life?
My most basic explanation is always: people on the spectrum receive and process information differently from neurotypical people. I have less filters than neurotypical people have. I notice, smell, hear everything. And most of the time, more intensely.
When I walk into a room, I notice every little detail. A neurotypical person may walk into a room and see a couple of people chatting with each other. What my experience is: I hear the clattering of coffee mugs on the table, people talking at the same time, I read the writing on the whiteboard and I can smell that somebody ate tuna just now. All these impressions drain my battery, even before I start to attend to the situation consciously.
Why do you think it is that many girls and women on the high-functioning end of the spectrum are never diagnosed?
There is too much unknown about it. Men often have more external body signs, like tics with a hand or the head. Holding eye contact is another one, which most girls manage to adapt to (although I still do it with pauses in between, to not get overwhelmed). You know, there is also a thing called “social camouflaging”. Girls and women are expected to be the social glue of any group they’re in, while it's broadly accepted that men care less about relationships or do less emotional labor. If a woman cares very little about social interactions, this is seen as "not normal" and it has negative consequences for her. So, girls on the spectrum often learn to copy desired social behaviour that they observed somewhere else, in order to fit in.
What are the biggest stumbling blocks for you in everyday life and how do you deal with them?
Unexpected situations. A train that doesn’t depart. My dishwasher that breaks down. A colleague that starts to cry. Even my partner turning on the smoothie machine (unexpected noise). You have to know that I live (or survive, you choose) by thinking about what is ahead of me. So that I can prepare in my mind what will happen to me and around me, how I can act, what will be socially expected of me. This preparation helps me in the moment when I feel bombarded with all the other unfiltered information.
That’s also why people always think I am super structured – because I have to prepare to survive certain situations and maybe generally, life. The preparation keeps part of my battery reserved for all the unexpected things that happen.
And if I feel that my battery is almost used up, I let the people around me know that I’m “overprikkeld” (which means something like being overwhelmed with external stimuli, but it sounds better in Dutch) and take some time for myself. That’s why I spend a lot of time in nature, where it’s mostly peaceful.
Are there situations where being on the spectrum gives you an advantage over neurotypical people?
Yes! A lot. I wouldn’t want it differently. My biggest advantage: I am pretty honest and straightforward and I think I dare to be myself more easily – because I care less about what others might think.
Also, I can hyper focus. When I am enthusiastic about something I will bite my teeth into it and not let go. Which can be annoying for the people around me, because I will give it my all and kind of forget about everything else in such a moment.
Sometimes I even feel for the people that don’t get to notice all the stuff that we do notice. It’s amazing! Okay, it costs us a little bit more energy, but it’s more than worth it.
One of the best known (and maybe clichéed) symptoms of autism is social disconnection. Did you ever struggle with building friendships or relationships?
This is a hard topic for myself. Since this doesn’t come naturally to me, I don’t exactly know where I didn’t make the right choices. The thing that I learned is to ask more “you”-questions. “How did that make you feel? What would you do in such a case? How are you?” Believe it or not, it took me a looooong time to notice that this is part of building relationships. I just thought: if you want to talk, you talk. Not that showing interest in somebody strengthens your connection.
What do you wish people knew about high functioning autism (in women)? What would make life easier for you?
Be patient. As I said before, information will arrive unfiltered. So we need some time to pick the right pieces of the puzzle to understand the situation and the impact it has. And of course, the classic one: ask what somebody needs.
Anything else you’d like to add?
Get to know how your brain works. Ask for what you need. Stand strong and use your super powers to reach your goals.
If these thoughts resonated with you, you can get in touch with Marrit via E-Mail, or you can reply to this mail and I’ll forward your message.
pop culture pleasures
I asked Marrit for some recommendations, but it seems too early for good representations of life on the spectrum, which aren’t male-focused. Where it gets close though:
Love on the spectrum (on Netflix): One of my favorites. It’s so beautifully framed and pictured. We are not fully there with the representation, but it at least shows it from different angles.
The character of “Saga” in The Bridge (also Netflix): I always felt a strong connection to her. Only years later I realized why. And yes, I still want that green Porsche Carrera that she drives in the series.
In Dutch there have been a couple of great books, but they don’t seem to have many translations so far: “Zondagskind” by Judith Visser (available in German: “Mein Leben als Sonntagskind”), “Zondagsleven” by Judith Visser (no translation yet) and “Maar je ziet er helemaal niet autistisch uit” by Bianca Toeps (available in English: “But you don’t look autistic at all”)
And some neurotypical recommendations from me:
“All Grown Up” by Jami Attenberg. I bought this book after someone on Instagram described it as “Fleabag in New York”. I would add “Fleabag with massive childhood trauma”, but other than that, that’s all you need to know. If you love Fleabag and can handle some ruthless truths, it’s the book for you.
Helena Fitzgerald is back with her weekly “Griefbacon” column and this week she wrote a beautiful piece about blasts from the pasts during times of global crisis.
“I hope everyone who has ever hurt me is safe tonight. I hope everyone has a place to go home. I hope my worst ex’s opinions aren’t as bad as I sometimes think they might be. I hope all the people who ever broke my heart are wearing masks and not attending indoor events. I hope all of their fears keep them safe.”
Alison Stevenson called The Bachelor out on all its heteronormative bullshit, but especially on not allowing representation of fat people on the show.
I loved the conversation between Jameela Jamil and Dr. Deepika Chopra on the I Weigh podcast. Chopra is a psychologist who specializes in optimism and resilience. She’s a straight shooter and makes it very clear that manifestation is NOT a thing (and really is just the epitome of white privilege).
I also really enjoyed Tan France’s appearance on the Homo Sapiens podcast – which apparently has been hosted by Alan Cummings for a while now. So fun!
And since I know that half of you are only here for the animal videos:
❤️ That’s it for today! If you enjoyed this week’s letter, you can show it some love by liking, sharing and forwarding it – my heart skips a beat whenever you do that.
Until next time,
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