As an autistic person everything is planned in advance, as an autistic mum to an autistic daughter, last minute plans cause a huge amount of stress for the both of us.
Routine is important, it allows for predictability and certainty, two things that get us through each day. It tells us where we are meant to be and when, it gives a sense of control in a somewhat chaotic world that is full of uncertainty and danger (some of which is perceived danger).
May daughter set her own routine in the mornings.
- Awake and up by 6.23
- Goes downstairs by 6.30
- Chills on her tablet until 6.55
- Gets dressed at 7.00
- Breakfast and turns to childrens TV at 7.10
- Brushes her hair when the first episode of Bluey is on at 7.25
- As soon as the second episode of Bluey has finished she goes to brush her teeth at 7.40
- We leave the house at 7.50
This routine means she knows what she is doing and when, it means she knows where everything is and she doesn’ have to rush (she hates feeling rushed), it brings her comfort and control. It means she is ready to leave when needed unless something happens to prevent her leaving on time, if that happens then her anxiety increases before she even starts the school day. The start of my day is set alongside her routine, ready for the school run, we leave with plenty of time to get there.
I did not realise the full extent of what change has on me until a couple of weeks ago, it added to a very difficult time as I was already stressed due to trying to get out in the community more often and thinking of volunteering (there is much more to it than that), so my social interactions had increased. It was the school holidays, trying to plan in the activities I thought we should be doing, allowing for recovery days, and feeling guilty our holidays never looked like my daughters friends holidays. I felt like I had reached crisis point, stuck in a tornado of anxiety, being thrown about with such a force that air had been knocked from my lungs and my chest hurt. Everything was met with irritability, anxiety and negativity. The need to self-harm was intense and I was experiencing suicidal thoughts, but I resisted . It took someone pointing out that my routine had changed to notice what was happening, it hadn’t occurred to me until that moment, once I realised some of the pressure and speed of that tornado decreased. It was a lightbulb moment, I could see the effect the uncertainty was having on my nervous system. My flight or fight was activated. It was further reduced when routine was resumed, but it wasn’t until I had a couple of hours alone time that my mind and body became calmer.
I have read the traits of autism over and over many times, but it doesn’t tell you the impact those traits and differences have on your life, it doesn’t describe how it feels. I learnt a few things from those weeks in crisis (I don’t know what else to call it) and they are:
- Uncertainty has an impact mentally and physically, one that I am not always aware of in the moment.
- I need routine to feel safe and reduce anxiety levels.
- I need to spend time on my own, away from interactions, other peoples emotions, and certain sensory environments.
- I need time to prepare, so I need pre-warning to attend activities and accept invites. At least the day before or 48 hours.
There is probably more I can add, but I think these 4 are vital to my mental health and wellbeing.
When friends and family ring and say shall we go out somewhere today, sometimes I may be able to say yes, depending on energy and anxiety levels and whether I know the place well. But, on the whole, I can’t do last minute. I need to be able to prepare, prepare myself emotionally, mentally and physically. I need to plan for the unexpected and any possible outcomes to feel safe. I also need to help my daughter to prepare for similar reasons, she is very much like me in these situations. I am aware how annoying and frustrating it can be for other people, quite often I have felt like I am letting people down, but I am not doing it to be a pain. It is what I need to feel safe and in control when so much in my life has been chaotic, misunderstood, too loud, too smelly, and out of my control.
For a long time I have hated myself for being this way, especially when it feels like every other person can cope with the things that I can’t, its not easy planning your life for every possible outcome. Uncertainty is a part of life, it is hard to avoid, but when you need certainly all the time it becomes highly stressful. It is impossible to be in control of everything.
The other day my daughter and I had planned to go out, I don’t drive so we rely on the bus, they put on a small bus rather than a double decker. My daughter was expecting a double decker as that was what it normally was, she managed to get on the bus but sat it silence. She shutdown, internally she was in a huge panic because it wasn’t what she had expected, was the rest of the day going to continue that way. She had no way of knowing. I have to be on my guard for these changes for both my daughter and myself, experiencing those intense emotions zaps energy levels extremely quickly and by the end of the day it can leave us completely exhausted. To people looking in a change in what type of bus you get on may seem insignificant, but it can have such an impact, its just one more trigger to an incredibly triggering day. We are constantly battling sensory sensitivities and sensory overload, those sort of things we may not have control off when out, so we grab hold of the things that we can.
⚪ Autism Parenting ⚪ 