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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Autistic Parenting – Some Core Principles When Life Isn’t Just Happy Stimming

Since I wrote the last post about how me and my kid hang out together, I’ve thought about all those other times as a parent. Although I think it’s really important to write about the beauty of autistic parenting, I also want to be honest about all those times that are just as important (or maybe even more important), but way harder. I’m talking about dealing with inaccessible schools and healthcare, meltdowns, sleeping problems, when other kids are mean to my kid, when our sensory needs don’t fit well together and so on.

To be honest, this is a very difficult thing to write about. It’s difficult in a practical sense, because there are a lot I don’t want to write about with regard to my kid’s integrity. It’s also emotionally difficult, because these issues are issues that I often feel sad and frustrated about. Being an autistic parent to an autistic kid is by no means always easy. Parenting is demanding in general and the fact that we on top of regular parenting have to fight ableism, and I need to deal with all my own disabilities and my disease, means that life is very hard.

I want to write about some of the difficult parts of parenting. Like hyperempathy – how do I help my kid deal with strong and unpleasant emotions when I get so affected by his emotions? And how do I practically handle having to fix everything to make the world accessible to my kid? Not to mention the underlying and really difficult question: How do I deal with the fact that I won’t be able to protect my kid as much as I want from an ableist world?

I don’t know how to write about this yet. But I can be transparent enough to share some of my fundamental rules as a parent, rules that help me navigate when parenting is difficult. These are:

  • Truly understanding autistic experiences of the world is necessary to be able to give good, respectful support to any autistic person. This understanding comes from spending a lot of time reading about other autistic people’s experiences of the world. (Only relying on my own experiences seems a bit dangerous, I need multiple autistic perspectives.)
  • All support, help and parenting should arise from the idea that my kid is supposed to get the best possibilities to grow as an autistic person. He’s autistic, he will stay autistic.
  • I want my kid to feel safe and loved, as the autistic person he is.
  • Self care, love and having other needs met don’t depend on behaving well. (I rarely talk about behavior as good or bad, if my kid does something that I don’t like I explain the concrete consequences of it. Then we try to agree on another way to do things next time.)
  • Predictability, having sensory needs met, having visual aids and other support systems are a a way of meeting basic needs. It’s not temporary, we will not aim at managing without it.
  • Balancing activities to make sure my kid doesn’t run out of energy is cruicial.
  • Feeling powerless in a difficult situation doesn’t mean that I actually can skip taking responsibility. I might need help to solve something but as the adult, I need to ask for that help. It’s not okay to put the responsibility on my kid just because I don’t know what to do.
  • My kid will thrive as an autistic person when his everyday life is organized in a way that he can handle. This means that adults around him need to provide enough support to only demand as much of him as he has the skills to deal with. Creating a chaotic situation that for instance demands executive functioning that my kid doesn’t have will just cause stress.

Just to be clear, I have no idea if these are rules that will work for other people, or if anyone even understands what I mean with this. These are principles that I use to handle life when parenting is hard. Hopefully, I can write more about the difficult parts of parenting later, when I’ve figured out how to do that.

What We Do

A while ago I wrote a post about how I tend to feel like a bad parent, mostly because of the disease that makes me unable to to a lot of parenting stuff. Since then I have thought a lot about it and realize that even though I don’t do a lot of the stuff that I think of as parenting, I do other things with and for my kid. To help my memory along the next time I feel like an absent parent, I’m going ot publish a list of some of the things we do together.

So, here it goes.

  • We chill in my bed with an iPad/phone/computer each, headphones on and indulge in our interests. Every now and then my kid interrupts me to show something he has written or a picture he’s been drawing.
  • I tuck my kid in at night. Put on his duvet, make sure all toes are covered (a ritual that he loves). Then we say good night in three languages.
  • We look at pictures and movies, both from when he was younger and more recent ones. He’s learning how to search among pictures and movies using keywords on my computer and loves it.
  • We write. My kid writes short stories on his ipad (or sometimes on a computer) and I write my stuff. Recently he started to care about spelling so now he’s asking me how different words are spelled and I have to try to explain different spelling rules in English and our first language.
  • I create visual supports of different kinds, and my kid is always involved in this. He gives me input by telling me how he understands pictures for instance, so I can create schedules, instructions and illustrations of different kinds that help him.
  • We make illustrated stories about things that are going to happen, things that have happened and things that my kid wishes for. We use a special app where we combine drawing, pictures, text and record talk.
  • We read together. The more severe my ME has become, the harder it is for me to read out loud but sometimes I read to him, other times he reads to me.
  • Stim. We color stim by blending colors in my drawing app (SketchBook), and look at things with nice, deep colors.
A red infinity symbol with traces of blue, yellow, green, pink and purple. The background is light blue with a hint of green. The picture is painted to look almost like clouds.

 

This list is by no means exhaustive and as a parent I do a lot of things that are more boring and not obvious to my kid, like planning different things with my partner, preparing for different events, arranged an assessment of my kid’s hypermobility and so on. But the list above is a good reminder of that I actually do spend time with my kid and I am his parent.

My way of parenting doesn’t fit the idea I have of what parenting should be, and it makes me doubt myself as a parent, but I need to remind myself that I do what I can considering being quite severley ill in ME, bedbound and housebound. I don’t parent in a conventional way, but I can give my kid something that I didn’t get: Space to explore and be his autistic self.