Having just been diagnosed I am learning how much is too much in terms of sensory stimulation and social interaction.
In my 28 years of undiagnosed existence I haven’t experienced being acceptance for my autistic traits. When I was a child I was labelled ‘shy’, ‘quiet’ and ‘boring’ for my individual pursuits and tendency to observe social situations before participating in them. (Not that the people who labelled me as such usually experienced my participation!) As I grew through adolescence into early adulthood I learned how I must act in order to get friends. I learned that I had to accept invitations to parties, I had to have answers to ‘get to know you’ questions (even if they weren’t true), I had to laugh at jokes that weren’t funny (especially if I was the butt of them), and so on.
And I succeeded. I had friendships during University all be it short-lived ones. I could keep the act up for almost a semester, then the friends would gradually fade away as exam period loomed and I was tired and stressed and my ‘NT’ guard came down. But I coped and, if I was lucky, the friend would return at the start of the next semester.
The price for an autistic person of keeping up this act is immense. At school I would recuperate daily in silence in my room. If this time was disrupted by a family event it would generally end in a meltdown for me. At Uni, where evenings were also social times, the price was paid every holiday in the form of illness that would kick in almost instantly after my final exam followed days in bed sleeping.
Now I am working I haven’t found that recovery time and I am paying for it. Actually, that’s not quite true, I have managed to work a full time job when I had my own place and I worked close to my home. The regular hours and routine suited me. However, currently I drive over an hour each way to my work, I am married and we are renovating our first home but haven’t moved in to it yet. I tried full time, it lasted 2 weeks. I now work 3 days a week and can work from home but my stress levels are continuing to rise.
So at the moment when somebody asks me to do anything I:
- Work out whether it is something I actually want to do. (This might seem obvious but hasn’t always been a factor in my decision making. I used to try and decide based on what I thought I should be doing.)
- Say ‘Yes I’d love to’.
- Feel a rising sense of unease about the event over the days/weeks before the event. Go over all the possible conversations in my mind and try to organise my answers. Work out the timings, how long I have to stay and how quickly I can be in bed afterwards.
- Panic about the event they day before.
- Not sleep well the night before (sometimes accompanied by a midnight meltdown).
- Wake up around lunchtime on the day of the event feeling exhausted, puffy eyed and sick.
- Text the event organiser on the day to say ‘I’m sorry but I’m not feeling well and won’t be attending your …’
So currently I have no friends.
I am working on knowing my limits so that I can reduce the times when I have to go back on my word but this is hard. It’s hard to know which nights you will sleep well so feel prepared for the next day, which days no one will say anything to hurt you so your day is not interrupted by crying, which days your routine will not be thrown off by an unexpected event so you have to spend extra energy trying not to shut/meltdown in an inappropriate space. I would love to be able to control all these things so that I am able to attend all the events I want to, but that is impossible.