I’m reading “Pretending to be Normal” by Liane Holliday Willey, and some other books about autism, and even though I recognize a lot from my own experiences there’s one thing that’s confusing me. It’s about my ability to play.
From what I remember, I could play with friends when I was a child. Most of the times playing with dolls was more about making our own clothes and organizing different outfits for Barbie dolls, but sometimes I think we actually played in the sense “pretending that they were doing different activities”. From what I remember, we had a genuinely mutual interaction. Autistic kids are not supposed to be able to do this, according to a lot of the litterature. Does this mean that I can’t be autistic? Or are my memories totally wrong?
I preferred playing with one friend at a time. Sometimes I really wanted to play with friends but I also remember preferring to playing alone. The older I got, the more tiring it was to play with a friend. I remember many times when I preferred being on my own and sewing new clothes for my Barbie dolls, trying to imitate outfits from different movies.
When I look back at my childhood friends (the ones I had until I was around 10) I realize that most of them were a lot like me. We were a bit awkward and didn’t give in to peer pressure. One of them, who I’ve recently connected with on Facebook, describes herself as an introvert book lover who prefers silence and not to be spontaneous too often. I’m wondering if I didn’t perceive myself as more than a little awkward because I had friends who were like me. This is probably also the reason for why my parents and teachers thought I was social. The big question is: Did my social skills work kind of well because I could easily relate to my friends because they were like me? Was that the reason for why I thought most of the other kids in my class were weird?
It comes back to what I wrote a few days ago, that difficulties with theory of mind are strongly affected by if another person is autistic or not. Maybe it’s possible that my memories are right and that I’m autistic.
Today, my kid asked me if I remember when I used to pick him up from school. Then he talked about a specific time, it was over a year ago when I had gotten a bit stronger and picked him up for the first time in a couple of months. He remembers that we stopped by the swings on our way home and that we cooked vegetarian pasta carbonara for dinner. It was a Friday and for the following month (or maybe half a year?) he wanted us to repeat that afternoon and stop by the swings and cook carbonara every Friday. I haven’t picked him up from school at all since May last year. My health got much worse during last spring and I picked him up a few times but when school started again after the summer I was in such a bad shape that it has been out of the question.
He hasn’t talked much about it during the last months but today he brought it up and I realized that I haven’t really explained to him properly why I don’t pick him up from school, take him outside to play or go to the library or to be honest, why I’m almost always at home and have to lay down most of the time.
Today I told him that the reason for not picking him up is that I’m ill, but I hope I’ll feel better later and can pick him up from school again. He smiled and told me he wanted that. My heart is breaking because there is no cure for ME/CFS at the moment. There may be one in a couple of years but that’s not for sure. I lied to him because the situation caught me off guard.
On top of my child being autistic and the demanding everyday life he has in school, he also has the burden of having a parent that isn’t well. I’ve been so focused on finding an accessible school for him and focusing so much on his health and well-being that I completely forgot that I need to explain my health and limitations to him.
So, now I have a new task to figure out how to deal with. I don’t want him to feel confused so I definately need to explain to him. But most of all I would like to get rid of this awful disease, ME/CFS, and start picking him up from school again. It hurts to miss out on so much of his life outside of our home.
As I wrote yesterday, my kid had had a night with not enough sleep and had a difficult time in the morning. I was in my bed trying to write a couple of emails while I heard my partner talk to our child about how he (our child) was feeling. I know my partner well enough to say that my partner was truly trying to understand how our child was feeling, but I got frustrated from listening to their conversation anyway. Why was my partner asking such irrelevant questions? I couldn’t exactly pinpoint why at the time, but a couple of hours later it hit me: My partner couldn’t intuitively relate to what our kid was experiencing.
A lot of the literature about autism talks about how autistic people have difficulties with theory of mind and are unable to see other people’s perspectives. Also, there are claims that autistic people don’t intuitively know what other people feel and think to the same extent as people who aren’t autistic. What I see with me, my child and my partner is something else. I often have an intuitive sense of what my child (who is autistic) is experiencing but I don’t have that with my partner (who isn’t autistic). My partner on the other hand usually doesn’t have that intuitive sense for me and my child.
I don’t think it’s as simple as having or not having theory of mind, I think it has something to do with relating to people who are similar to us. Experiencing sensory overload myself makes it easier to think that it could be happening to somebody else. My partner describes it like I have some kind of radar that picks up subtle signals about our child being overloaded, or that the environment we’re in is demanding, long before a meltdown.
This could be one of the reasons for why I find it so hard to answer questions about if I find it hard to understand other people’s feelings, thoughts, experiences. It depends on if they tend to have similar experiences to me or not. And what’s more important: Maybe it’s a really confusing thing to claim that people who aren’t autistic are so great at understanding other people’s perspective. Maybe it’s more about that people who belong to a majority happened to meet more people that have similar experiences to themselves.
Today is just too much. I’ve spent the weekend at home with the rest of my family also at home and I’m filled to the extent that I think I’ll explode soon. Filled with sounds, movements, pictures and the plain knowledge that they exist. Because, to me it’s actually energy consuming to be reminded of other people’s existence. It’s very hard to explain exactly why but it’s like I have to do some active processing just to deal with the fact that my kid and partner exist when I’m around them. There’s nothing automatic about it, I can’t relax and get recovery when they’re at home.
When I’ve tried to explain this to people they look at me like they just saw an alien and they sure have no clue what I’m talking about. I remember when my kid was around eight months old and had just started to say “hi” to people we met, even to strangers we passed in the street. Most people found it charming and responded and that was too much social interaction for me. Sometimes the person started talking to me, asking how old my baby was and other smalltalk questions and I had to fight really hard not to start crying. At some point when I was crying in the evening I tried to explain to my partner what was happening and with my desperate, sobbing voice I managed to articulate the phrase “I don’t even have the energy to relate to other people’s existence”. My partner was confused and I guess that was one of those moments where I realized that I am definitely sensitive in a way that my partner isn’t. I didn’t understand much more about it at the time though, it was just confusing and scary.
This morning my kid had slept poorly and he did obviously not have enough energy for preschool. We decided that he can stay at home and not go to preschool and I know it’s the right thing to do. It’s not okay to push him through an overwhelming day and push him into meltdowns tonight. However, I’m crying because I desperately need a couple of hours for recovery after the weekend, and I have a lot to take care of. I really feel like an awful person for wishing they weren’t at home. For not being able to interact with my child and leaving that to my partner. I’m ashamed like hell right now.
The thing is, I’m also exhausted for spending too much energy on trying to make certain healthcare facilities accessible for me and my child, and from all the work with making preschool more accessible. All those emails, phone calls (and sometimes meetings) that I need to spend my very precious energy on because of an ableistic society increases my need for recovery time.
I’m not asking for advice on how to get my alone time, there are a lot of facts I haven’t written about here so please, no advice on that. I just felt like writing about this experience, because I’m trying to understand it.
One of the things that confuses me is when diagnostic tools for autism are designed without consideration of what it’s like to be autistic. When I went through my assessment for being diagnosed with ADHD there were a basic screening for autism too. One of the questions was if I found it hard to understand what other people were feeling. I answered that I didn’t find it hard, even though I think other people are confusing most of the times. Why?
Because I’ve been working so hard all of my life to figure other people out. I’ve read, practised, analyzed, been in excessive therapy and concluded stuff. Compared to when I was a kid, people aren’t nearly half as confusing to me now. Today, I can intellectually figure out what other people think and feel most of the times. This influenced my answer but it was not the only thing. Consider the fact that I have a tendency to interpret questions literally. Also, consider what it’s like growing up and feeling constantly misunderstood. I was under the impression that nobody was very good at understanding anybody else, because most people were unable to understand me and my feelings. What to you think these three facts together resulted in?
The question wasn’t phrased with any reference to my childhood. The question said nothing about who I was supposed to compare myself with or how hard I had to work to understand other people. So I answered that I didn’t have any difficulties. Because yes, I have worked myself into exhaustion trying to understand people most of my life, but since everybody told me that it’s normal to be tired I thought that this state of constant exhaustion was what life was all about. That I was just lazy, unmotivated and demanded too much from life since I couldn’t just live with it.
I don’t think this is a particularly uncommon experience for people seeking diagnosis as adults. I’ve read enough storied from other autistic people by now to know that there are other people who share my experiences. So why isn’t this taken into consideration in questionnaires?