The last two years have been really interesting for me. Before I got ill i had a pretty settled identity, i knew i was autistic but i had developed a very good mask. I was "coping" and i thought that was the same as living.
When I got ill that mask fell apart, then after the operation it collapsed completely. I couldn’t continue how i had been. I had to address the autism stuff properly.
In short, i had to stop developing masks and instead develop a proper identity. An autistic one. Here are some of the things i have learnt along the way.
The social model can be summarised as "the environment disables people because the environment is badly designed, ". In other words, in most scenarios, the challenges i face are not actually due to some defect with me, but due to defects in the environment around me.
This change of perspective has been life changing for me. It helped me move my focus away from self attack / trying to ‘defeat’ the autism and towards fixing the environment around me so it was suitable. Fixing the environment has worked MUCH better.
I have always had strong preferences for various things. For example i have carried lion everywhere with me for well over 10 years now. Part of learning to be autistically happy was learning to accept what worked and just go with it.
This builds on the social model above. In my own home i should use what i find easiest. For me this means things like swapping my mugs for sippy cups and china plates for plastic bowls. Small changes which make my day to day life much easier.
I have also accepted that many environments wont be well designed so i have to take steps to defend myself. My ear defenders and headphones are not "issues" they are effective mechanisms to make up for other people getting stuff wrong. Using them is a good thing.
Alongside adapting the environment the other big change i have made is to restructure my life around a series of routines. I have then sought out help so i can follow them.
For example, each evening someone from the local learning disability and autism team visits to help me complete my routine and settle for bed. This improved my sleep and gives me a stable base to work from.
Another area is that i have started to be realistic about what i can and cannot do. Running out of energy is not a failure, its a chance to learn and refine my ability to pace myself. Part of pacing is also learning when to outsource tasks so i can focus on the stuff which is important to me. It’s more important that i remain employed than that i cook my own pasta in the evening
Being autistic is how i am. Other people are tall, others are short. Autism itself isn’t a bad thing. If anything its a good thing, there are many challenges but they can be overcome quite easily when i stop worrying about what is "normal" and instead focus on what is effective.
It has been a hard two years but overall i think i am in a much better place with my life. I am slowly becoming more independent and i am doing so in a sustainable way.