One piece of advice… always stick to the plan

I’ve mentioned previously in my blogs about how a change in plans – such as a delayed flight or my ‘things’, like my wardrobe becoming disorganised – can cause me to have a mini-meltdown.

I want to add to that topic and talk about the level of stress change can cause for those on the spectrum. There have been a few times in my life when I have completely shut myself down and away from the world as I have not know how to process change.

I’ll start by talking about more minor reactions to a change in plans. If I am informed a few days prior or sometimes hours in advance that a plan of action has been changed then I will be able to allow myself a few moments of panic before I can begin to process the change and alter the plan in my head. This means when the change happens I am able to cope with it much better than if it was sprung upon me in the moment.

My parents favourite story to tell is about when we went to see The Hobbit: An Unexpected Journey at the cinema; pre-diagnosis. I am a HUGE Lord of the Rings fan and I had been waiting years, (no exaggeration) for this film to be released. I had been planning the trip for months and finally the day had arrived where I would be able to see the cinematic Middle-Earth on screen again. About 3/4 of the way through the film the projector malfunctioned. The film stopped and we were told it could not be fixed – we were asked to leave and offered free tickets to come back and watch it again another day. This was not part of my plan. I stayed seated refusing to move until they resumed the movie. I sat there stomping my feet and causing a scene for over half an hour before my parents gave up trying to move me and said they’d meet me outside. I realised I couldn’t stay there on my own and that my plan had definitely changed despite my initial denial. I ran out the cinema into the lobby area and sat in a corner on a bench crying my heart out. My parents found me and – I am ashamed to add I was fifteen years old at the time – laughed at their young-adult daughter being so over-dramatic at a film failing to play. I don’t blame them for laughing it must have been quite a sight seeing a fifteen year old throwing a tantrum as if she were in-fact two years old.

At the time we didn’t know about Autism or the possibility I was on the spectrum. Looking back I can now make sense of my reaction. Something I had planned and waited years for was finally going to happen. That plan was changed with no pre-warning. It felt like my world had been turned upside down and I was at a loss as to what I should do next. I live my life through plans, as most on the spectrum do. I wake up knowing what my day ahead will consist of and this makes me feel calmer and more able to tackle the day. I struggle with the unpredictability of communication. I can’t control communication but I can try and control what may happen in between the communication and this makes life easier for me.

A big example of change is when I left sixth form and completed my A-levels. All I had known for 14 years of my life was being in education, studying, seeing my friends everyday and working part-time. Suddenly everything had changed. The planned schedule I had lived by for 14 years was no longer applicable. All my friends had left for university and I was left behind working part-time in a pub and shutting myself away from the world.

It was a tough time for me, caused by the massive change which I didn’t know how to process. I would only leave the house for work or to visit my boyfriend and as my hours tended to be evenings and weekends, whereas my family and boyfriend worked weekdays 9-5, I was doing next to no socialising. I would get upset to my Mum most evenings when I was at home that all my friends had left for university and I was unable to go with them – I felt a huge pressure that I should have gone too, put on me by nobody other than myself.

I spent most days crippled by anxiety scared to go outside or partake in any potential social events. I shut myself away and off from everyone bar my family and boyfriend for around a year.

I’m pleased to say I got through it. One day I picked myself up and decided it was time to put a new plan in place. I got myself a new job and tried to get out more. I realised that just because my friends were at university doesn’t mean they were gone forever. I could see them some weekends and in the holidays. I created a new plan for myself, a more lenient one which allows small changes to occur daily without causing me a meltdown. Instead of having one set plan for everyday as I did in school it was time to adapt and have a different plan for different days; unfortunately, due to the time I needed to get over the massive change in my life and my Autism it took me a lot longer to realise this than it perhaps should have done. At the start of the week I will plan what tasks need completing at work, which day I am going to the gym, writing my blog and what the plan is for the coming weekend. My plans allow me to get through each week with minimal anxiety and stress.

I still react badly to huge changes and think I always will. Even the word ‘change’ sends a shiver down my spine. I am lucky to have supportive family and friends around me for when a meltdown is brewing, but I am aware others in the same situation as I, may not.

You may not understand the way somebody is reacting to a situation. You may think they are being over-dramatic and need to ‘grow-up’. You also probably don’t know what that person is going through and how hard they are trying to breathe and stay calm. All it takes is for you to be supportive and try to rectify the situation back to its original plan. If this is not possible then give the person space to process the change and they will come to you when they are ready – the last thing they need is you saying to them, ‘it’ll be ok’ and to, ‘get over it’ as in that moment, to them, it will feel like gravity has failed and they are falling into the abyss.

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