Tests and Narratives

I’ve taken a couple of tests that are supposed to be a part of assessing if a person is autistic. So far I score above the cut-off on all of them, meaning that the test results indicate that I’m autistic. However, that’s not the main reason for why I think I’m autistic. The recognition from all the stories from other autistic people is by far a bigger reason. Not that I always recognize myself in everything, because I certainly don’t, but because I find the reasons for why I screw up my life over and over. Learning the term “sensory overload” made a huge difference for me, now I have a word for this excruciating experience.

So a big thank you to all of you who share your stories.

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Who’s the Expert?

Today is supposed to be a day of rest and recovery after a Christmas celebration collapse. I can hardly write, I can hardly stand up  and I’m nauseous and dizzy. However, I have so many thoughts about my (undiagnosed autistic) childhood and my mom that I can’t rest.

My mom still thinks she has some sort of right to make decisions for me. This is ironic, because growing up she encouraged me to be independent. What I’ve realised is that she supports my independence now too, as long as it doesn’t mean that I question her truth about the world or about who I am. I let her help out with stuff sometimes but it’s becoming more and more obvious that for every time she “helps out” she expects some sort of power in exchange. Her help doesn’t have to be helpful, most of the times it’s stuff that I’ve never asked her to do, but she tries to help me (or at least she claims so) and then she is the expert and she gets mad when I don’t live my life as she wants me to.

She claims that she is very humble and listening, that she really adapts to my wishes. And she does. If you have the perspective that she is entitled to run my life, then yes, she is trying to listen. But my starting point is that where I live, how I spend my time, how I raise my kid – none of that is any of her business. I’m not interested in her opinion at all. I’m not interested in her interpretations of my health, my personality, my child or anything else. From this perspective she is crossing the line every time she sends me an email stating where she thinks I should live. Or every time she claims that she knows better than I do what my kid needs.

During my childhood, she hurt me so many times because she didn’t see that I wasn’t the daughter she thought I was. She called me resentful because I couldn’t let go of my anger when I was five. She called me too sensitive and told me I had to stop being so sensitive when I freaked out from the music from my brother’s room. None of us can change that now but when I see her still not understanding my kid’s sensory issues my patience is long gone. When she time after time claims that an activity she wants do to with my kid will work out just fine (even though it didn’t the last time) – I don’t know what to say. Because it doesn’t matter what I say. Because she is the expert, according to her.

I can’t stand this. I’ve had enough of people claiming that they know me and my kid better than we know ourselves.

 

Can I Be Autistic and Read Facial Expressions?

So apparently I have doubts if I actually am autistic again. This time the reason is that I can read facial expressions. Not necessarily well, but I can do it. Can I really be autistic then? There are three aspects of this that make me wonder.

The first one is that I have become better at it the last couple of years, I’ve done a lot of misreadings when I was younger. As I wrote about in the post about my eating disorder treatment, my inability to read other people and to be socially smooth provoked people and had a big impact on my relationships to others. So is it possible that I’ve just learned it with a lot of practise?

The second aspect is that most of the times when I’m around other people, the problem isn’t that their faces and body language isn’t telling me something, the problem is that it’s telling me too much. There is so much information that I can’t navigate automatically, instead, I have to think and very consciously debate with myself what the other person really means. Their words say one thing, their tone of voice says something else, there body language and facial expresson give me a third message.

The third aspect is that sometimes I read people too well, I pick up on very subtle things and I can see that they are not telling me the truth. This doesn’t happen very often, however.

On top of this, I don’t lack empathy. It’s more like I’m lacking a shield or some kind of shell and I’m very strongly affected by other peoples emotions. It’s like somebody is pouring a bucket – no, a barrel – of emotions over me when other people have somewhat strong emotions. Like I’m drowning. Of course, this makes it harder to navigate and read other people.

Is it possible to be autistic and be like this? Is it possible that I’m a lot worse, or a lot better at reading people than I think I am? Is it just that I have a way too stereotypical image of what autism is supposed to look like? Or maybe I’m actually not autistic? Is there anybody who shares my experiences?

And Then What?

The other day I wrote about how I now identify as autistic but that I don’t have a formal diagnosis. After posting the text I started thinking about if I should tell people around me. My partner knows but I haven’t told anybody else so far.

The thing is, I feel like I risk being questioned if I tell people without having a formal diagnosis and I don’t know if I have the energy to deal with that right now. I felt the same when I came out of the closet and told people about having ADHD but at least then I could lean on my diagnosis to support myself when people didn’t believe me. All this makes me question why it’s so important to have a formal diagnosis in order to dare standing up for myself. Wasn’t the whole point of daring to say “I’m autistic” on Twitter that I trusted my own judgement enough? Obviously not as much as I thought.

This is hard. There’s more to it. It’s about claiming that I know myself better than people around me do and I find that scary. I feel ashamed from so many years of other people claiming their interpretation of me being more accurate than my own.

An Eating Disorder Treatment Overlooking Autism

CW: Eating-disorders, interalized ableism.

 

I need to talk about my experience from being in treatment for an eating disorder. I don’t feel at all comfortable about talking about it, as a matter of fact I try to not think about it. The reason for why I want to write about it is that it’s one of the experiences that points me towards the belief that I’m autistic. And because it shows how much damage ableism does.

The treatment was four hours/day Monday to Friday in a group consisting of me and six other women. We had lunch together with a therapist, followed by different kinds of therapy sessions and ended the day with a coffee and some afternoon snack.

I interpreted what the therapists said very literally. When they said that it’s important that you all are committed and actively participate I thought it meant that it’s important for me to comment on what everybody else says, all the time. Even when I didn’t have anything of interest to say. I overshared and made pointless comments just to make sure I was committed.

At the end of each day I was so exhausted that I couldn’t process anymore. Every day ended with the group having an afternoon snack and when other people started talking more casually, more in an everyday manner I had nothing to say since I had spent all my energy on trying to be committed during sessions. However, if the other participants found me annoying for talking too much during sessions, now I was perceived as uninterested because I didn’t smalltalk. First I talked too much and then I talked too little. I didn’t comment on the right things, I was told, because I wasn’t commenting on clothes and appearance.

To be honest, going through this treatment was four months of pain. Four months of starting to hate myself even more. Four months of learning how everything about my way of being was wrong. I also picked up a few things about how I should behave to not be so disliked. I shouldn’t talk too much and I had to start compliment people for their clothes.

However, I didn’t learn what I needed to learn about myself. I didn’t learn that my way of being could even exist. The most important knowledge about my eating disorder I learned ten years later when I was talking to my partner about different ways of realeasing the intense pressure that builds up during the day. That all the noise and all the visual stimulation builds up and results in a desperate need to do something drastic to let go of the tension. My partner looked at me and told me that he had no such need, that he didn’t feel like that. Later on I read about meltdowns and sensory issues and then I understood that the binge-eating and throwing up, the extreme exercise and the days of starving – it was all about dealing with being overstimulated.

Now I’ve written it. This treatment is such a painful memory but I’m starting to see it differently. It was an eating disorder treatment without knowledge of autism. And that was not my fault.