It’s the small things, part 1

As you might already know, I’m in the process of having my work capabilities evaluated… still. It has been about one and a half year now, and about a month ago I was told that it would probably would probably take a while longer  until everything is complete. It appears they need more data. Personally I’m guessing it’s a combination of people within the system not caring, the system itself failing and no one, ‘experts’ included knowing anything about autistic people.

They probably have no idea of why I’m not to work like ‘everyone else’. Something I actually had to explain since one of the first things I was asked by the Unemployment Office was ‘there’s no reason you can’t work full time? The therapist at the Unemployment Office sent guidelines to my work about what tasks I can and can’t do which make no sense at all and clearly weren’t based on me and my abilities and needs. They seem to be guessing. The answer is, it’s the small things. And these small things are everywhere. Some of them I’ve been aware of for a very long time and some I didn’t discover until after I found out I was autistic. I struggled because of them, but I could never have guessed that these things made me disabled. I now know that the only autistic traits that matter to neurotypicals are the ones that make us stand out. That make us inconvenient. That scare or confuse them for no other reason that they make us different. That’s really not what being autistic is about.  So here, any ‘professional’ and other NTs reading this, here’s a shortlist for free.

Distractions – Now, being distracted really does a number on me. I’ll be thrown completely off track and it might take me a while to continue what I’m doing. Being interrupted is also likely to upset and stress me. For example, when I still lived with my parents: I’d be on my way to school/uni/work and then getting an unsuspected ‘good morning’. That could be it. I’d have to start anew and it probably meant that I’d be late to wherever I was going.

Sleep  – I have a hard time sleeping. I either get to little, or too much sleep it seems. It takes a long time for me to fall asleep and I tend to wake up several times a night. Sometimes I’m too upset or too scared to sleep and won’t be able to fall asleep until the sun is up, something that can go on for several weeks.

Working memory – My working memory is not good. I don’t mind too much, my brain is a giant storage of interesting things and I prefer it that way. On the other hand, I will probably not remember what I’m doing as I’m doing something. I will have no idea of why I’m holding something, I might even forget to keep holding it which means I sometimes drop whatever I’m carrying. I might go into a room and have no idea of why (but I’m pretty sure there was a reason). Or I do something just to realise that what I’m doing makes no sense: putting dirty dishes in the fridge, put a cup of hot chocolate in the said fridge, pouring butter into a glass I’m meaning to clean.

Reading instructions – I don’t understand most neurotypical instructions, written or told. I suppose they are rather straightforward, but there’s still many steps missing so I find myself struggling. Video guides that I can rewind and re-watch as many times as I need do help. Especially accompanied with arrows and other pointers.

Executive dysfunction – It’s hard for me to both start doing a task as well as shifting my focus from one task to another, something that is called executive dysfunction. To me, this is closely linked to that I simply do not know how going to do something. 99% of the task might be clear, but then there’s something. Do I have permission? Where exactly do I start? What about step 7? If I’m unsure I probably won’t do said task at all until someone either gets angry and/or starts helping me.

Anxiety – Most things give me anxiety, many of them work related. Sleep, waking up, getting to work, arriving at work. Being at work. When should I take my lunch break? Am I doing it right? And then finally going home. I’d like to feel safe when I get home but there’s usually something I have to do, cook dinner for today and also making lunch for tomorrow. Grocery shopping. All of these things come with a different set of anxiety.

Spatial awareness – I am clumsy. I bump into things. I trip over my own feet. I bite both my lips and tongue embarrassingly often when I eat. This all makes everything a bit harder for me. I take a bit longer to do things in general.

Lack of automating tasks– I am also likely to do things in the incorrect order (the truth is I just kinda move my hand in a direction and knock things over) if I’m not actively thinking about what I’m doing. This means that I always have to remind myself of what I’m doing. Taking my left hand, grabbing the cup. Holding the cup while opening the micro wave with my right hand. Take the cup. Lift it, put it to my mouth, open mouth, drink. Or like many other times I’ll just take a cup and pour it on myself.

Socialising while autistic – but not for the reasons neurotypicals think. I am polite, great with visitors and anyone else I need to keep a fleeting, professional relationship with. At the same time I  can’t connect with my NT coworkers at all.

Because of this I require extra support in many areas of my life, including the work setting. On top of this, a life full of stress and anxiety has left me with little to no immune system and I spend most days, at and off work ill. In an ableist, anti-autistic society, working will never be good for my health, physical or mental nor will I be able to compete successfully on the job market. I simply will not survive working full time in a hostile environment, but proving this seems to be an impossible task.

A tricky web of lies & writing a truthful report

I have a confession to make. I lie. I lie quite a lot. The truth is also that I lie less after having received my autism diagnosis. My lies are mostly about myself. I claim understand something even when I don’t. I say I’m fine when I’m really not. Sometimes I lie to blend in. Sometimes I fake having an interest in men. When I was younger I forced myself to watch Dawson’s Creek just to keep up with my classmates’ interests. I would have preferred to watch comedies and cartoons. I also lie because it’s the smoothest way to keep a conversation going. I lie to tell people what they want to hear, because otherwise my scripts fall apart, and I can’t continue the conversation. I lie about my health to get people off my back and stay away from the mess that is healthcare.

In a way, I lie both to save myself and others. As I’ve come to understood, contrary to popular belief, lying is quite common among adult autistics. Often for the same reasons as above. It becomes a way survive when no one else understands or believes us. You know, and we’re oh so close to falling into the abyss.

All this leaves me with a problem. A kinda big one. I am doing my arbetsprövning,  that is having my capacity for work measured. I am hoping for it to be 50% / 20 hours a week. 50% seemed low when I started, but after over a year with financial etc problems, I’m worried that 20 hours a week will be too much. If I’m correct, Arbetsförmedlingen / the Unemployment Office will write a report, as well as my doctor (whoever this is, I don’t have a GP because that would require to find one in the first place. This will screw me over, probably). Anyhow, they also want input and feedback from me. I hate it. i have no ide of what am I supposed to share. How honest am they want me to be. How can I soften the blow for everyone involved? I would really like to do this, and it requires that I lie.

Honestly, everything about this makes me unsure. Working, or any reoccurring activity is taxing because of stress and anxiety. And that’s just mentally and physically preparing and travelling to a workplace, before I even step out the door. I often wake up with stomach ache and I’m too stressed to eat. I don’t sleep well because of anxiety.

Then it’s work. I need to be able to work, but I also know I will never be 100% comfortable. I feel unsafe outside of my own home. How much energy am I supposed to have when I get back home? I’m not feeling well, I haven’t been able to think clearly for quite a while. Is this something I should mention?

I have spent my entire life lying to others about this kind of things. To peers to avoid being bullied. To my parents to keep them happy and content and therefore not paying much attention to me. To healthcare personnel. To myself. And now I’m trying to figure out what to do with my report. How honest should I be? I know this report is for my own sake, but I’m tired of being constantly monitored and frankly I’m starting to not care anymore. I don’t want everyone else to decide everything concerning my life. Therefore, I want my answers to give predictable results and this is how I want to tailor them. I don’t really care about how truthful my report will be. I do find this sad, but at the same time logical.


Writing while Autistic

I made it! April is finally over and I kept my blog generally positive throughout Autism Month. I can go back to my normal schedule where I complain and rant, something I’m looking forward to after biting my tongue for an entire month. Happiness!

What to write about then? Lately I’ve been busy with real life things. April ended without me being able to finish quite a few entries I’ve been working on. Even so, I noticed that many bloggers I follow kept making (quality) updates. This made me think about these writing processes as well as my own. If anyone wants to share their writing process, please do! I’m very curious. I also wonder how being autistic influences my writing, because I’m sure it does.

Okay. It starts like this. I get an idea. What is this person’s writing process? How about mine? Does my writing process differ from others? Wait, I use the same type of process for my blog as I did for my academic papers. Could this be a topic? Fine, now it is.

For example, this idea came to me yesterday. I then spent my time thinking about what to write and how. This is the most time consuming part for me. Much time is spent staring at the ceiling collecting thoughts and ideas. After this is done, I turn these into words and sentences because I mostly think in images. While translating colourful arrows flying around in a world of glitter into words is taxing, I also enjoy crafting sentences. I find this to be a bit like finishing the last touches to an art piece, or having finishing a dish and then adding the last decorations to the plate.  So very satisfying.

When I finally sit down by my computer, which might not start until several days later, I start by writing these sentences down.  My writing then turns into a game of connecting the dots where I try to string these ideas and sentences together to make a coherent post. I find this very frustrating and I’m very likely to quit, or at least take a break. When I finally return to my writing I tend to change it rather drastically. A lot of copy-pasta being thrown around and then it’s finally time to look over and edit specific sentences. When I’m happy (or to be fair, get frustrated once again and give up) I press the publish button.

My relationship with writing is complicated. I both love and hate it. Writing is very frustrating, but at the same time I also find it very rewarding. So far, writing for this blog has been more fun than I could ever have expected and I hope I’ll be able to keep it up for a long time.






#redinstead An actually autistic party post

Congratulations! It’s autism awareness acceptance appreciation day! I am aware of how exhausting this month is to many of us, and it’s only just started. I’m not going to focus on that today. I’m going to focus on the awesome autistic community. Because this is where my road towards self-acceptance starts. You’re literally life savers.

About two years ago, my psychologist told me that he suspected that I was autistic. He wanted me to think about if I wanted to get an neuropsychiatric assessment. The very second he asked, I wanted to shout yes. Someone has finally noticed that I’m different. I was so relieved. Since I wasn’t sure of what he was talking about, I told him with a very neutral autistic poker face that I would think about it until next appointment.

As I’m sure many of you have already guessed, I spent the next two weeks researching neuropsychiatric disabilities and autism. The sites offered by health care and charity (intresse) organisations had at least published the new diagnosis criterias for autism, as well as the old ones. Oh, my senses are heighted, but I can do theory of mind? I couldn’t see myself at all.

I then remembered that I had been linked to a blog by an autistic writer a while ago. I looked it up again, and from there I found many other blogs. I was amazed by how these awesome bloggers wrote in a way I instantly understood. Not only did their writings all make sense, as well as the way they described their lives, experiences, feelings and thoughts…  There was a specific blog post where the author discussed how she sometimes, on good days wondered if she really was autistic. Then she recounted all autistic things she did  during a day and came to the conclusion that of course she’s autistic. That was it. She had pretty much described my life. I was finally home. Sadly, I never managed to find that blog again.
I continued to read. I learnt about identity first, neurodiversity & the social model of disability. Lovely things that have changed the way I think about myself and the world. A few months later I was relieved to receive my autism diagnosis (I was worried that I wouldn’t be seen as autistic enough). I had already embaced being autistic.

I then did the awful mistake of not starting to interact with the online autistic community for almost one and a half year. Or perhaps it was a good thing to wait. Even though I identified as autistic, I still didn’t know how to talk about my experiences.
I joined a few local groups and events in my area, but I quickly realised that these people were not into neurodiversity & identity first. Disappointing, but it meant a lot to me to share experiences with others like me. Still, hearing these people’s opinions only made me more sure of my own convictions.

And now, quite recently I decided that I was ready to take the plunge. I started a blog and started interacting with other bloggers. And then I ended up on Twitter, just to find out that not only are these very thoughtful & interesting people, they are lovely and very easy to socialise with as well. I feel welcomed and accepted, and that’s all I really asked for. Being in contact with other autistics (that care about disability rights, not the boring aspies in my hometown) has allowed me to speak up and work with them to fight ableism.

Therefore I hope everyone in the autistic community will be proud of themselves through April. Practice all the self-care you need. If it’s too much, feel free talk to me about anything, really. We deserve more than simple awareness. We deserve to be loved and accepted however NT or autistic we present. We deserve nothing else than to partake in society on our own premises and get the accomodations we need in order to do so. This is why I’m going #Redinstead.