Week 29 - Collecting my thoughts at 8 months.

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It’s been a almost 8 months since i lost my speech, started living independently etc. It’s been a really interesting period. In this post i want to take a look at what topics and threads are swirling in my mind. Hopefully by writing about them i can inspect them better.

Being Alone.

One of the ways i’m like a 5 year old is that if i am left alone for a long period, i don’t feel safe and i get distressed. It feels as though an elephant is stood on my chest with pointy shoes. If i push too much, i end up shaking or having a panic attack.

Doing something alone is not a problem, its being away from trusted people which i find hard. Perhaps more acutely now i don’t have the ability to speak.

Since i first started living alone we have reduced the amount of time i am alone in steps. First i was only alone during the day, that proved too much, so we reduced it to 7-8 hours a day, and finally were now looking at ways to reduce that to 3-4 hours alone a day or less.

I am trying to find ways to avoid being home alone for long periods at all. Then once i am stable, perhaps we can try time alone again.

Routines / Schedule are magic.

With the help of our amazing autism expert babysitter, we have established an evening pattern which works really well. When she arrives she writes a Schedule and sends me a photo. I then agree it and then she helps me to follow it.

My evenings have never been better! I am clean, healthy and eating regular meals. All good achievements.

Routines are like schedules except i manage them myself. For example, my morning routine is a set of steps i perform every morning. No one helps me with them.

Routines are much harder, but also very useful. Always knowing what i will be doing "next" helps to keep the anxiety in check.

We’re hoping extra morning support to turn the routine into a schedule will really help.

Identity is hard.

Identity is really hard. I’m slowly coming around to the notion that "the autism" is just part of me and not some "enemy to battle". With it comes a change in strategy, accepting more help, pushing myself less etc.

Im still in the middle of accepting all this. My friends are very positive, so this helps emmensely. "Autie not Naughty" is a phrase i often hear when i start declaring something i do as "silly" or "stupid". For example, I considered it ‘naughty’ to want my ear defenders at home. Or I’d start telling myself of for flapping in public. These things are not naughty or even bad.

Long term this is important. Its clear i need lots of support at the moment, but hopefully with a more positive view i can accept that and use it as springboard rather than fight it.

Autonomy is key.

Somewhat related to support and identity is the concept of autonomy. I see autonomy as a measure of how empowered i am to change things, without everything collapsing.

For example, i have autonomy with my meals. I need support to action my decisions, but i do get to decide what i eat and when i eat it.

I dont get to make the same decisions about where i sleep. I am forced to sleep where there is suitable support, so if i can’t get support at home i have to stay with friends.

Being able to stay with friends (they have even given me a little room of my own!) is AMAZING. But we would all rather i was not forced to be there by an inability to last a weekend alone.

My autonomy will recover, but it will take time. Employment, finances, support and identity all feed into my autonomy so thats why they are good places to focus my energy.

Final thoughts.

Nothing here is all that new. These are all things I have struggled with in the past. I return to my flat for 4 nights next week after having a 3 weeks staying with friends. Returning to my flat is scary. I am not looking forward to dealing with so many elephants. However, it’s not for long and we do have more support coming soon.

There are many positives for me to celebrate from the last 6 months. There are challenges too, but it’s just as important to embrace and accept the challenges as it is to enjoy the achievements.


Spaced Out & Smiling is about exploring the fun side of Autism, and trying to understand what it means to be Autistically Happy.

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