Keeping Up Appearances

I read a post about the problems with calling autistic people “high functioning” and it made me think of how much my life always has been about struggling to keep up appearances. I grew up without any names or diagnoses for any of my disabilities, and not knowing I was autistic was by far what made me suffer the most. I worked so hard on seeming “normal”, because when I failed (which I did, a lot), nobody understood that I needed help, support and accessibility. Instead I was considered weird and punished in different ways. One of the reasons for why I think functioning labels as so harmful is because it becomes a measurement tool to state how “normal”, meaning similar to neurotypical, an individual seems to be. It obfuscates how much work a person might have to do to keep this up and as a result, a lot of autistic people suffer in severe stress collapses. (There are more reasons for why I think functioning labels are harmful, for instance I see it being used as an excuse to treat people terribly bad, just because they are considered “low functioning”.)

So what do I mean when I write that I worked hard to seem normal?

  • I did careful research in books, movies, tv shows, among kids in school etc. about how people moved and talked.
  • I observed people around me and analysed what kind of behavior that led to different outcomes. I didn’t understand it, but I memorized it and spent plenty of time analyzing it.
  • I took all this research and wrote lists on what to say, what to not say, what to do, how to walk, how to dress, how to be in order to seem like a real, relatable person.

Writing this makes me cry, because I can’t believe how hard I had to fight every day as a kid, and still – I failed. I was punished in different ways for everything I couldn’t be.

I was eight years old the first time I started to refuse going to school, because it was too much. I was stressed out. I wonder if people understand what kind of life this was. I worked myself to exhaustion and still I failed, not only in certain areas of life – I failed at being a real person. The lists I made weren’t like a helpful shopping list to remember what to buy, it was an attempt to construct myself as a human being worthy of respect and being liked.

As a kid, I hid most of my interests, because they were considered weird. I had to hide almost everything that was me and my life was a constant battle to just navigate and understand people’s behavior. It felt like I was running a car really fast in the middle of total darkness with no lamps – I had no idea what to expect of anything. I had no idea when I was going to crash into something, I just knew that I would and still couldn’t stop. Because the only way of stopping and protecting myself from collapsing was to stay at home and hide in my room. I did that in periods of time, until my parents dragged me to school, threatening me with that if I didn’t go to school, the police would come and place me in foster care.

I was verbal, but talked to mask everything I didn’t understand. I had so many scripts that worked fairly well, but it got me into trouble too. When I actually did tell the truth, without scripts, people didn’t believe me. My reality simply couldn’t be true. According to people around me, there was no way you could stop going too school as a teenager because you don’t have any mental energy left.

I thought about all the energy consuming research to fit in when I watched parts of the first episode of the horribly bad Atypical on Netflix. We get to see the autistic main character Sam do exactly this type of research, but the show fails to portray how exhausting it is. I think that’s really bad, because this kind of emotional and mental labor seems to be a fairly common, and a very exhausting, part of autistic people’s lives.

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Books never asked me questions I couldn’t answer

When I was around ten years old, I read a series of books about a girl in the same age. This main character, we can call her Bee, is based on the author and the story took place a couple of generations back but in a neighborhood not that far from where I grew up. I recognized some of the places described in the books but a lot of things were different too, because the story took place around 50 years earlier.

Besides from being a wonderfully told story, these books gave me something that no other book, person or anything in the whole world could give me as a kid. As a ten-year-old, Bee was the only kid I had ever heard about who just couldn’t go to school. For Bee, school seemed meaningless and the way these books portray depression and exhaustion for a kid were so similar to what I experienced. From what I remember Bee isn’t overwhelmed as much as I was as a kid, but the experience of hopelessness are written in a way that hit me hard. The total darkness that hit me every fall, the impossibility of getting up, getting dressed, eating, going to school – I didn’t know what it was. And just like me, Bee just had enough one day when she was in her classroom and the meaningless of life hit her, and she got up and left. Even though my escapes usually were more dramatic, reading about Bee doing almost the same made me less lonely. Because even though no adult or kid could understand what I was trying to explain, I knew there was somebody out there who could at least imagine it well enough to write a book about it. I thought the books about Bee were pure fiction and that made me think that what I experienced was so weird that it was almost like science fiction. It was something that people made up, nothing that happened in real life. This was not a very nice thought, but I still adored these books.

A few of years ago I read an interview with the author and learned that Bee is very much based on the author herself, and the books based on her childhood. No diagnoses were mentioned but from her description of herself, she could very well be autistic. Even though I’m going to refrain from further speculation, I know from the interview that the episodes where Bee didn’t go to school were something that actually happened to the author. I read this interview when I had just really realized that I am autistic and I had started to make peace with the memories of being unable to go to school as a kid, and it was such a comfort. Like my childhood memories finally started to make sense to me.

I think reading the books about Bee was what made me really hooked on reading and writing fiction. It was through Bee that I found that books were the friends who never asked questions I couldn’t answer, but instead gave me a sense of orientation in a very confusing world.

The answer doesn’t help if I don’t know the question

I’ve been writing about Liz recently. The memories of her have been haunting me, partly because I miss her, partly because there were a couple of things about our relationship and what happened that I could never grasp. Feeling confused in relationships is so common to me that I take it for granted, however, with Liz my confusion was worse than usual. (I have a problem with delayed processing, which means that it takes time for me to process and understand interactions. I come across as indifferent or cold when I don’t understand what’s going on in the moment.)

Yesterday when I was writing about her, one of the knots untangled. I could finally phrase a question that I’ve had the answer to for a while, but since I didn’t know what question I was asking myself the answer didn’t help much. My post from yesterday is called Would you love me as disabled? and that’s what I’m wondering. The very painful answer is no, I don’t think she would. At the moment I can’t say if this is a rational assumption or just my internalized ableism talking, but I don’t think she would have had much feelings at all for the disabled me.

Being with her was exhausting because I was so exposed, so bare, and still I tried to keep up the appearance of being the non-disabled version of me. It was an impossible mission and that’s probably why I froze so many times.