It’s not my job to bring about change

When I first started my website, I mean the first one, that is going to be shut soon as it only allows 99 posts per blog, I was really concerned about how my actions affect decision makers. Let’s be honest, being autistic is not easy: when I wasn’t aware of my condition it felt like I was constantly made wrong by multiple people: ‘you shouldn’t be thinking this way’ was rather standard reaction. But this was how I was thinking, what I was supposed to do with this?

After diagnosis it wasn’t much better. I remember that lady from the college who I met in Job Centre, who was speaking to me very slowly and I didn’t know what to say. ‘I understand normal speach’ couldn’t come out of my mouth for some reason. Her attempts to better communicate with me only made me feel worse about myself.

So when I started that website, I was really focused on bringing about change. I used to email various people to make them aware what I think autistic people need. No one seemed to be really bothered and professor SBC was probably the worst of everyone who I ever emailed. None of those researchers ever asked me about any more details and I was getting frustrated. How come, I was thinking, I am autistic and my experience is being ignored by autism researchers.


And although I still think that this a good question, I realised it’s not my job to bring about change. The realisation came exactly when I started writing on the blog about my real emotions. No one can come and tell me now that I shouldn’t experience them the way I do and it’s not my job to argue about anything else.

Mind you, I’d still like if the communication methods used by my diagnostician were widely taught but there’s not much I can do about that really. I’m not even sure if I should transfer posts about it to my blog, possibly not? I don’t want to be that challenging person any more, the only thing I want is to be heard.

My mum is going to that private care home today, and I woke up early again, after just 4.5h of sleep. That is still good enough for not getting psychosis. I somehow stopped worrying about the care home manager and running out of money for mum’s care, but I still worry about other things. I was thinking earlier on, if I could remove one of my problems from the list (alcoholic brother, mum in need of care, fraud, lost ID and unemployment) I would go for unemployment. It would be so much easier knowing that I have a job to go back to.

I keep looking through various job adverts and feel very confused. I find it difficult to imagine how the job may look like or sometimes certain phrases made me shiver (‘the job could last years if you get on well’ sounds to me not like a promise but like a threat), I also don’t know what to say at the interview that would be convincing enough to hire me if I never did similar job before.


I am not convinced I should be working in care again, and it’s not because I don’t like taking care of people. If anything it was my colleagues that I found really tiring. Constant chats, socialising and never ending change in the team dynamic. Being put on safeguarding barred list is taboo for me, it feels so final and also I don’t believe I deserve it. I was making constant effort to cope in this job and it now feels like yet again it was not enough. Like with everything else really. But then, I think, if I end up on that register, I’d really need to make a change. And possibly I need it. It’s still 25 years until retirement. But then, what that change would be? I somehow feel like I’m not cut out to regular working environment at all.

The other thing is my possible dyspraxia (that means I’m quite clumsy). It would be quite difficult to work somewhere where I need to move quickly, like possibly in Amazon warehouse. So it feels like, although I’m certainly capable of working, I may not be good enough for various workplaces. That is not nice, knowing that whatever I start doing, I’m worse than everyone else. The education system didn’t prepare me for that.

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