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 in 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.

We Will Always Have Our Script

“This is a hard situation”, I said to my kid.
“Yes, this is a hard situation”, kid replied.

This is a dialogue that took place a couple of days ago, when my child was upset. The lines probably don’t look like anything special, but the exact lines we used (which weren’t in English) were actually a quote from a children’s book that we read a lot for several years, and this quote has a special meaning to us. It’s hard for me to see my kid upset, just like it’s probably hard for my kid to be upset, and a couple of years ago I found it difficult to know what to say and do in these situations. At one point, when I realized that my efforts to comfort him were just making him feel worse, this phrase came to mind. Over the years, this phrase has developed to a mutual script that means that I recognize that my child is having a hard time but I will remain calm and not try to fix it or comfort him until he comes to me and tell me he’s ready to be comforted or for me to do something to practically help him.

People who hear us use this phrase seem to think that it’s a cute thing I do to help my kid. What they don’t realize is that having a mutual script is just as much about helping me, because I find it easier to remain calm when I know what to say. I don’t get caught in his feelings and it’s a great way to not get overwhelmed myself. When I stay calm, I’m a much better help to my child.

To me, this is what autistic parenting of an autistic child is about. Instead of me feeling guilty for not being able to immediately comfort my kid (who might not even want comfort right away), I do what I need to do to help myself be a good, autistic parent. I┬ádon’t try to become a non-autistic parent, just as the help I’m providing for my child isn’t aiming at making him less autistic. I do my best to provide the love, support and help for us to have meaningful lives, where we feel as good as possible as the autistic people we are.