Lacking Information and Processing Problems

Content: This post mentions anxiety and discusses processing problems and chaos in relation to poor information about disability services.

 

 

I’ve been approved for some disability service. It means that somebody will come and do some cooking, cleaning and laundry for me. Earlier today I tweeted about how much anxiety I’ve had ever since I found out that I am approved for this help, and in this post I’ll try to explain one of the reasons – processing difficulties because of lack of information.

A red rectangle with black. and white images inside it picturing cooking for someone, cleaning and a washing machine.

This is disability service, or more correctly a symbol for disability service. I will get help with cooking, cleaning and laundry.

The rectangle is now grey, but the black and white pictures are still there. Around them questions marks have been scattered.

I know what kind of services I’ve been granted but, there is information I don’t have about this service. Some of the information I don’t have can be articulated into questions, like “are there time limits for each task?”. However, with most of the stuff I don’t know it’s different. All I know is that there are things missing to create a whole image in my mind, like pieces that connect the known pieces to each other. I know that I don’t understand how this service is supposed to work, but I don’t know what information I’m lacking and therefore I can’t articulate questions about it. The red color in the first picture is like the glue that creates a connectcion between the other pieces – but it isn’t there. The pieces of information I have are like fragments that are not properly attached to each other because of the missing information.

Same grey rectangle but now the pictures of a washing machine, cooking for somebody and cleaning have been tossed around so they are tilting and look like they are just scattered around together with question marks.

People seem to expect that I’m supposed to understand the information I have and ask about the things I don’t know, but to me it doesn’t work like that. Since there are pieces missing, I can’t process the whole picture and I don’t even understand the information I have. I can process the things I know as individual fragments, but that doesn’t give me a clear picture of what it’s going to be like to get this help. Instead, trying to think about this disability service is like trying to make sense of a chaos. Pieces of information are tumbling around. My brain works constantly trying to process and understand what it will be like to have this help but all it does is draining me of energy and causing anxiety.

Intimacy

I keep thinking about what I wrote the other day, that social interactions are so hard, for so many reasons. One thing that I didn’t mention is that interactions can lead to intimacy, and it can be intense. Too intense to harbor. There’s no way of knowing which interactions that will be too intense, too good, too scary. It just happens, and I’m never prepared.

Honestly I don’t know which force is the strongest, my fear for intimacy or my craving for it.

Intimacy is difficult because I tend to not understand what kind of intimicy I’m experiencing. All I know is that interacting with someone feels good and I want more. I want to be closer. But in which way? That’s not always obvious. Sometimes it’s obvious and comparatively uncomplicated, but all the times when I don’t know what the longing for more of this person is – it scares me. If we met AFK, would I want to kiss you? Touch you? Confide in you? Talk about autism or philosophy? Be comforted by you?

I don’t know. And that scares me. And of course, I don’t know what the other person feels, if they experience any sense of intimacy at all. That scares me even more.

Recently, someone asked me to show myself to them. Not that much, just a piece, but an important piece. So I did. It was scary and energy consuming but oh so good. I want them to ask me for more. I want to ask them for more. But I won’t. This person did probably not understand how affected I was from our interaction and I won’t tell them, because that would be to cross a line I have no intention to cross. I hid behind theories, or maybe theories were what made the intimacy possible. I don’t know. All I know is that the interaction was difficult but felt so good and now I want more.

I don’t know if this is something particularly autistic or not. It makes me feel ashamed and that’s why I’m writing it. After all, this is a place where I write about shameful issues.

Interactions

Social interaction. Why is it so hard? Or more exactly, what is it that makes it so demanding to me?

My life is filled with people I care about, and I want to interact with all of them. So what’s stopping me? I don’t know. Maybe that I can’t focus on more than one person at a time. Maybe that I have to think very hard and tend to spend energy on thinking about how to behave to not be a burden or annoy the other person. Maybe it’s because dialogues sometimes make me hyper. Maybe it has something to do with that my brain is such a mess and to keep focusing I have to contract every mental muscle as hard as I can to remember what we’re talking about.

It has something to do with my inability to shift focus. I can focus on writing (or sometimes talking), or I can focus on reading (or sometimes listening). But the shift from one to the other, back and forth, feels like running a mental marathon. When I have to shift focus, I don’t parse what I’m reading and thinking automatically.

It’s ironic, the focus shifting comes back in everything.

I read what people write. I ponder. Then I write something but never as an obvious reply. I rarely reply in twitter threads. I read and then I make my own thread.

Sometimes it’s easier. When I get to talk about one of the things that I care passionately about. But then I feel guilty about me taking up too much space. It’s not that I don’t want to know what the other person is thinking, it’s just that I’m not good at articulating questions. I fear that I will ask something that is too private. I don’t want to be the person that violates somebody’s privacy, because respecting boundaries is always more important than a correct conversation.

Of course, it’s also the fear of rejection. I can’t get rid of the gaze that deems me as defected. Nowadays I call myself autistic and I have found other people that are very much like me, but it doesn’t erase thirty years of being wrong.

The Lonely Polyam

Content: This post includes mentioning of an abusive partner, but no explicit details.

 

I don’t know how old I was the first time I realized that I could feel romantic kinds of love for more than one person at the same time. At the time when it happened I didn’t know that there were other people who felt the same and to me it wasn’t an identity, I just considered it one of my flaws.

A couple of years later I was familiar with the term polyamorous and I had found a couple of people to talk to about it. I had come to the point of articulating the question “How does it come that it’s considered perfectly fine to love more than one child, more than one friend, more than one sibling or parent, but never ever to love more than one person as a romantic partner?” To me, this was an honest question but most people outside my poly community seemed to interpret it as a rhetorical question intended to provoke. I didn’t want to provoke, I wanted answers. I wanted to know what I could do to either stop feeling the way I did, because it was obviously so wrong to most people, or to figure out a way to live with my feelings without hating myself for it.

Because, even though I ended up as a speaker in workshops with such great answers about all relationships being hard and demanding work and what not, I never actually figured out how to deal with myself. I had a girlfriend and after a while a boyfriend too, and it didn’t work. I ended up with the same problems as in most relationships of any kind, but so much worse. Everything that was difficult for me in relationships was intensified to a point that teared me apart. Having more than one partner and taking a totally different direction than the conventional path with one partner at a time meant that I was exposed to being misunderstood by more than one person at the same time. Everything that was weird about me, all the stuff I didn’t have words for, became even more weird and impossible to relate to. Living a poly life with all the unpredictability that came with it made me more lonely than ever.

Today, I think that there were many reasons for this. One was that the girlfriend mentioned above was mean and actually abusive, another was that I didn’t understand myself as an autistic person with sensory and emotional overloads. I need to have plenty of time on my own to process and when I didn’t get this I had so many meltdowns that I never understood. I need to know that my processing time is something that will be respected, something that I didn’t experience in most relationships. At one point I was sure that the poly thing wasn’t for me, that it was just a phase and that I needed to put it behind me, so I did. Or, I tried to.

I’m still able to feel romantic kinds of love for more than one person, but today I live in a monogamous relationship. My partner accepts that I’m polyamorous but I hardly have energy to maintain my relationship with him, and there’s absolutely no practical possibility for anybody else. But, I loved someone else too a couple of years ago and until recently I’ve felt so guilty about it. I had forgot that it’s possible to love two people at the same time and felt like I let my partner down by loving someone else too. And then it hit me a couple of days ago that just because I couldn’t handle more than one partner at a time doesn’t mean I don’t have the ability to love two people.

The Parent Movement and Self-Diagnosis

Content: This post contains ableism.

 

Recently, I’ve been getting som pieces of hope regarding the movement of parents to neurodivergent kids. I’ve seen autistic parents speak up about the ableism within the parent movement and even though it has mostly been met with silence or total dismissal, I thought that maybe some kind of change is happening. Then I got a reminder of how bad the situation actually is.

Where I live, most parents to neurodivergent kids don’t know what ableism is. There is no organization for self advocacy for autistic or neurodivergent people, only one for people with specifically Asperger’s syndrome and they are very ableist themselves, not wanting to have anything to do with people with people with intellectual disabilities or people with what they consider a too big support need. The big discussion point in media is if autism and ADHD really exist or if it’s just made up by Big Pharma and lousy parents who can’t control our kids. Autism Parents are not used to being questioned by autistic adults and the parent movement is so permeated by ableism that it seems impossible for most of the parents to even imagine advocacy without ableism. Neurodiversity isn’t only misunderstood, most Autism Parents haven’t even heard of it.

The other day, I was also reminded of how the concept of self-diangosis is basically non-existing where I live. Despite the fact that there are multiple factors that will decide if a formal diagnosis is possible or not, even so-called self-advocates often refuse to see the need to recognize self-diagnosis. I came out as a self-diagnosed autistic and was basically told that it couldn’t be recognized and it hurt. It hurt more than I expected. It hurt because even if I wasn’t expecting miracles, I had some hope for this specific context and group of people. When a person in charge declared that they didn’t care at all about all the reasons why a formal diagnosis isn’t possible for all autistic people, I was a bit disappointed.

Because how can you declare wanting to empower neurodivergent people but only those privileged enough to get a formal diagnosis? How can you refuse to care about for instance the racism, ableism and sexism that keep a lot of neurodivergent people from being diagnosed? I don’t understand how anybody can defend throwing some people under the bus in a struggle for empowerment and against oppression.

This is so typical and one of the reasons for why I’m creating more and more distance between myself and most other parents of neurodivergent kids. I work hard on dealing with all my internalized ableism, not only for the sake of my kid but also for my own well-being. Being around Autism Parents and the rest of the parent movement is too much of a reminder of why I should hate myself.