People often ask me what it’s like being autistic. My response is that it’s exhausting.
It really is. And I’m not being dramatic.
I sometimes wake up in a fog because I’m afraid of what the day may bring. And by that I mean I have no idea of what is going to happen that day.
Other than waking up, making porridge, and emptying the dishwasher as the microwave makes my porridge (and I don’t mean that it reaches out a hand and – wearing an apron – stirs it with a wooden spoon), all the time smiling and not getting frustrated by the amount of time that it takes to make the dam porridge!
Once that’s over with and I’ve waited an hour, I work out and then it’s all up in the air as to what happens next. Unless I have appointments that day, my day has no routine.
I am also afraid.
I’m afraid of what I may say to someone throughout the day, either family or friends or other people.
During conversations my brain works over time trying to think about what I am saying while trying not to offend anyone.
I can’t stand apologising for every tiny thing I say which may be wrong. Just take me aside and say:
‘Hey Nick, look, I’m not sure you are aware but the way you just responded or replied to that conversation wasn’t necessarily the best way to convey your feelings. What you said in response came across as offensive and we know you didn’t mean it to but here’s how it sounded’.
If I’m not informed then how can I learn?
Changes of Plans
It gets worse if plans change.
Say I am meant to meet a friend for lunch and they change it to a dinner. Well, I’ve gotten myself all prepared to meet them at lunch time because that’s what had been agreed to and then they go and change it and I find myself agreeing to this new time and arrangement but in reality I want to yell at them; “How dare you expect me to respect your wishes and change things.” Of course I don’t yell those things at them and I find myself going along with these new plans. But quietly in my head I’m angry.
I have a meal planner on my fridge and written under each day of the week is what is for dinner (my sister is the cook in the family). But if it says on Wednesday we’re having spaghetti bolognese and on Friday it says fish and chips, but that gets swapped around, then that bothers me because if it says one thing it should be that one thing! To everyone else it’s no big deal, but to me it is, and if I bring it up it comes across as if I’m having a go or I’m being rude, which isn’t the case at all. All I’m concerned with is why the change has taken place and what the reasons are behind it. So I bite my tongue and accept it.
And say the bread I like isn’t in stock when I go shopping at Aldi – I would lose it in my head but I can’t express my disdain because people would stop and stare and look and point and wonder why this guy is losing it over bread. It’s not the bread. It’s that they haven’t got the one I like in stock, so I end up either buying an inferior brand or I have to go and shop else where.
If I email my job consultant and they don’t get back to me straight away it is because, in reality, they’re probably busy working and balancing other clients. But if they take two days to get back to me via email or text message, it really frustrates and upsets me, and eventually I need to vent in someway as I think ‘Why?’ ‘What have I done to deserve this kind of treatment?’ In my autistic brain I can’t understand why they aren’t doing their job. After all, without me they don’t get the government funding they need to operate.
Lastly, if I go into a shop to buy some clothes I don’t need to be greeted by someone and asked if I need help. I’m not being rude, but I just want to be left alone to browse and to see if there is something I like whereby I will select it, go to the fitting room try it on and possibly buy it. Sorry to those working in the retail sector. Again it’s not rudeness – it’s just how I am.
It is easy for everyday people who aren’t classified under the autistic umbrella but for those that are it’s hard out there.
I am happy when I have structure in my daily life. Without it I’m at a loss.
Currently I have my writers group on a Saturday from 10-12pm. I am also writing a novel which I hope to see published one day soon as I’m over halfway through that process, and I am contributing to this very blog (a big shout out to my editor Janine Ripper who is just awesome – she is also responsible for me getting to interview the keynote speakers for the 2017 Autism West Symposium).
I’m also reliant on people being as honest with me as I am with them without wanting to cause offence.
I would also ask you to be patient with me if at first what you’re trying to convey with me isn’t sinking in. It will but maybe we just need to come to a certain point where we both understand each other.
This blog will be magically enhanced by Janine Ripper’s expert skills in editing and inserting GIFS. She will also make it magically appear as if I’ve made it readable and wonderful to read [Note from the editor: the praise really must go to the writer, Nick McAllister – Janine].
Thank you for reading and once again thank you to Janine for allowing me to express my creative skills and share my experiences via the Autism West website.
About Nick McAllister:
Nick McAllister lives in Burns Beach, is a screenwriter, blogger, ABC open contributor and also attends the Saturday writing group at the Peter Cowan Writer’s centre. He is also facilitating two of the digital media workshops run by Autism West on Thursdays and Fridays.