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.