It’s hard work being autistic.

Ok, now bear with me, because I need to put some context behind that title statement. For those of you who don’t know, I used to be an ASD specialist teacher until I stopped teaching in 2012. So, I already knew that for people on the autism spectrum, the effort needed to ‘appear normal’ is intense and when life is stressful autistic traits are more visible to others. But, I have never noticed this within myself with such clarity until now.

Stress takes over

It’s fair to say life is pretty stressful for me at the moment. I am adjusting to life with one leg, as well as life being single again. I am also a business owner which is stressful enough on its own without adding covid and staff shortages on top of being signed off by the doctor as unable to work more than 10 hours per week. (And rightly so, might I add, from the GP). Add onto all that the fact that I am constantly fighting the NZ medical and legal services who are constantly putting blockages and barriers in my way making life even more unnecessarily difficult than it already is when they are supposed to be trying to make things easier. Top that all off with PTSD and you can get a taste of what it possibly might be like to be inside my head at the moment.

The effort required to be autistic

Then we add in the autism and everything starts to spill over. Normal everyday things (well, in your view as a neurotypical anyway) suddenly tip into the too hard basket and everyone wants to know why you’re so freaking stressed, why you aren’t coping like you used to, bla bla bla.

If you are autistic and reading this you are probably nodding your head in agreement right now. Let me give some examples of stuff we have to do all day every day to just continue to appear like normal humans. Stuff you take for granted if you are not autistic, but stuff we have to constantly make a huge effort on JUST TO GET THROUGH THE DAY.

Do not underestimate the impact this has on someone with autism.

When the day becomes too ‘peopley’

If this was all we had to do, this would be simple. But its not.

Conversations. Working out

  1. What was said
  2. What that means
  3. What that might mean in the context of this conversation.
  4. What expressions the person has.
  5. What they might mean
  6. Self doubt, because someone with ASD will always know they get most of this wrong.
  7. Rotate back to the top and work through the list again. And again.
  8. At some stage in this cycle, figuring out what my response is
  9. Then wonder if that is appropriate. If not, what is appropriate?
  10. Perhaps head back to #1 and start over again….. and again

All the while we are doing that the other person has stopped talking and is waiting for a response, wondering why we might be taking longer than they expect. That delay might only be negligible, or if we are tired, more noticeable, but it will be there.

You can very quickly see why interactions with other people are simply so exhausting. If we do not know the other person, that adds a whole extra level of uncertainty and effort required.

Some days I feel exhausted because the day was simply too peopley. What I mean is I had too many social or work based verbal interactions with others to deal with and my brain is fried, or I am heading for a meltdown. (As in complete functional breakdown not just a kiddy hissy fit).

The effort of using and working out language

This might sound totally dumb and crazy. But bear with me while I explain.

The English language quite frankly gives me a headache. No one ever seems to say what they mean. So in that hamster wheel above that I described – add in a few extra bits where I am working out the literal meaning of the phrase used, then figuring out what the person might have really meant instead.

EG: I’ll call you later.

To me, that means before the end of today. To most other people (specially Southlanders!!) That means at some stage, some day, time frame undetermined.

So when that person doesn’t actually call me later that sends me into a meltdown. This wee detail can happen many many times a day.

  • If I get to it
  • I will see how my day is going
  • at roughly…. [states at time]
  • maybe

….. to name just a few examples

We live life in black and white.

So, if i get around to it… to me means, maybe i will, maybe I wont, i am not telling you and you will have to wait and guess.

See how my day is going…. Says to me that you are not prioritizing me or my task like I want you to and you do not care about me.

Roughly….. there is no roughly about time. Time is specific and time is measurable. State a specific time and then stick to it. There is no roughly about it.

Maybe… is the word I really really hate. I need yes or no. Will or won’t. There is no maybe. Just the same as there is no ‘try’ because the nature of the word itself suggests a ton of effort and ultimate failure or incompletion at the end.

Too much noise and mayhem

Autistic people do one thing at once when it comes to social senses. This is the single biggest mistake I see teachers make with ASD.

Look at me when I am talking you you!!!

I can listen, or I can look. DO not ask me to do both. How I try to normalize this problem is by looking just past the persons ear, or just over the top of their head. So my eyes are pointing the right way, but I am not distracted by ‘looking’ so I can listen to what is being said.

This becomes a ton more challenging when

  • I am talking to someone I do not know.
  • There is a lot of background noise or movement
  • It is too hot (or too cold) for me to feel comfortable
  • There is more than one person trying to talk to me at the same time.

Same deal. I can do one thing at once. So all the other things need to go. I get to a point in the day when My brain is just like NOOOOOOOOOOOOOOOOOOO. I need to actually go and sit somewhere quiet, still and do NOTHING to let things calm down. I often do this in the park. I have also started using the focus music in the headspace app recently if I cannot find a suitable location. I put my earphones in and listened to one of a river. It made it very easy to block everything else out of my brain and create some mental stillness. I have to do this at least once a day, just to keep on a level and make it through to nightfall.

Then this whole damn thing is more challenging again when I am tired and stressed because other shit took up my energy and left me nothing to work with just to get through the day and act normal.

It’s hard work being autistic

Melanie Magowan

Hopefully the title statement now makes a bit more sense to you, and at the moment it all just feels a bit too hard. The stress of the stuff I listed is hard, making working out the world on a day to day basis super fucking hard.

So, give me a break. I won’t just get over it. I am not just being a bit OTT or overly stressy. Equally that autistic person in the middle of a meltdown trying to use stimmimg to calm themselves is not crazy.

Our brains are wired differently. But… invisible disabilities often get forgotten in society these days.

So, I am just reminding you again, in case you forgot. I am autistic, and bloody proud of it too. Because I navigated 42 years of my life with this drama before someone actually took some notice and worked out what was going on. 42 years. Go me. (And all those other women who were diagnosed later in life.) Because it is much more common for a woman’s ASD to go un-noticed. We spend a significant amount of time building skills to cover it up so the world doesn’t notice.

It’s a shame we feel like we even have to.

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