Changes, Routines and ‘Changing Your Mind.’

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Routine is more important than food to me.

Without a daily, weekly and monthly routine I do not have the self-confidence or flexibility-of-mind to function in the world. I do not feel safe in the world. Days without routines are disorientating. It’s like treading-water in the middle of the ocean, and not knowing which direction to swim in. You panic because you are out-of-your-depth: you don’t know what is coming next and you fear that your autistic mind might not have the skills to process it, order it, or make the necessary quick-decisions to cope with it.

I need to know what is going to happen next, all the time.

Routines mean that we know what we are doing, so we can focus-on keeping our sensory alarm-bells quiet. Routines are our instructions on how to be in the world. We learn the routine, we get good at it because we repeat-and-repeat it, we find comfort in it, and we feel good that we are behaving and succeeding, like other people do.

But of course, life isn’t that easy.

Sometimes, plans change, like a red-eyed bull, bulldozing through your planner. It changes your direction and expectations, leaving you standing amongst it all with your head in your hands screaming NOOO! Autistic people can be intolerant to change in the same way that some people are intolerant to nuts or eggs or pollen or gluten: it’s all about finding ways to ‘cope’ with the changing world that we are not built for.

Let’s face it, nobody likes change. But the difference manifests in the mental and physical impact change can have on someone who is autistic. The impact of ‘change’ can last days and days…

It is impacting on me right now.

On a ‘bad’ day, when the smallest plan or routine changes, my anxiety flips from zero-to-ten in one-second. That anxiety hinders any ability I might have had to adapt and re-plan. It disables me from thinking at all: I know how to swim, but I cannot retrieve that knowledge from my brain at the moment, because I didn’t plan to be swimming right now… and it’s making me anxious, and the anxiety is hot… and it looks like anger to you, but it’s not, it is fear…

The battle my body fights to resist the change leaves me with chronic pain.

That is the negative side to it, but there are positives to being a stickler for routines.

I think my dedication to routines is why the behaviour of the children in my class is always outstanding. Nothing unexpected ever really happens. We share an accurate plan for every lesson together and I am in control of any changes. Changing-the-plan sometimes becomes part-of-the-plan, and we tell each other that it is good to make changes-for-the-better, because that means we are always learning. We just have to remember to communicate the changes very slowly, and very clearly, so that we are not confused. Together we succeed because we are secure. The children are not anxious, I am not anxious. They know their places, their roles and responsibilities, their time limits, my time limits, my expectations. And when something out-of-my-power does change slightly, we cope with it all together, using clear reasoning.

Before my Autism diagnosis, I wondered why I got-along so well with the autistic children: I think it is because they knew what was going to happen next, all the time.

Every child was trusted, calmly-confident, valued, safe and independent because of crystal-clear communication and routine. After a few weeks of practising, we perfected some highly-complicated classroom routines, enabling me to ‘juggle children.’ I could teach two-or-three six-year-olds at a time, whilst the other twenty-nine worked independently, and they did so passionately. They knew my lesson structures. They knew I would be with them soon. In return, they received pacey, creative, intricate, personalised-learning, attention and care, pitched-perfectly right for every corner of their little-individual minds. We all liked helping one-another to be peaceful, to be extra-tidy, to be patient, to be encouraging, and we could all have fun because we were safe. What joy it gave me, to be able to use my (then undiscovered) Autism struggles to benefit the children.

I accidentally taught them all like they had Autism, because I had Autism, and it worked.

I used all my energy-up making a perfect-world for the children in my classroom, but I didn’t do the same for myself at home.

I need to run my home like my primary school classroom.

But of course, life isn’t that easy: people get ill, the weather is all wrong, people move house, there’s traffic, people change their hair, the car breaks down, people’s moods change, things get cancelled, people die…

If you are close to an autistic person, you will probably know all this already. You will already know that it is important to communicate everything very clearly: to plan things in detail, in advance; to talk through plans several times before any event; to keep to the plans; to be as consistent as possible; to take time to discuss any changes that need to happen in a very clear manner; to be patient; to be understanding.

It is hard being autistic, but it is also hard being friends with an autistic person. Friendships between autistic and non-autistic people are very special when they work out. I am reminded of this every day when I think about the extraordinary friendships I have.

Thanks to my friends, I am able to socialise, even though ‘Autism’ doesn’t generally want me too.

This month I have seen some wonderful shows with my friends, including Harry Potter in Concert at the Royal Albert Hall, where a live orchestra played the soundtrack to the film The Chamber of Secrets. I also saw Blood Brothers at the Mayflower, which is one of the most devastatingly-brilliant performances I have ever, and will ever, see, I am sure. This is thanks to my friends who include me, who patiently talk through the plans with me time-after-time: they tell me what we are going to be doing next, how long it will take, when it will finish, who will be there, where we will sit etc. I think it helps them too.

It takes away my anxiety and fear-of-the-unknown and enables me to enjoy social times in a safely-structured way.

They stick to the plans without ‘changing their minds,’ (which is a very complex and painful-sounding habit that many ‘neuro-typical’ people often tend to do.)

I don’t know how to ‘change my mind.’

If I could ‘change my mind,’ I wonder who I would be…. I wonder what kind-of-a-mind I would choose… I wonder if I would still choose to be Autistic…

I don’t know…..

3 thoughts on “Changes, Routines and ‘Changing Your Mind.’

  1. Hi Claire, you probably don’t remember Jon and I from choir. We left choir a few months ago as we are spending a few months travelling. A few days before we left, after a year long wait, Jon was assessed and diagnosed with autism. I have spent so many years trying to ‘fix’ Jon’s personality it is taking some effort to understand that it was never his personality anyway and he isn’t ‘fixable’ anyways. I was really struggling to find out much about how to understand Jon’s mind as the majority of information out there seems to be for children not some hulking middle aged man! I discovered your posts last week, and they are really helping me to understand what is happening in Jon’s world in a way that he isn’t able to describe. Thank you and congratulations on being such a wonderful writer. Jeanette (Côté) xx

    Liked by 1 person

    1. Of course I remember you both 🙂 Thank you for taking the time to read my blog and comment, that is really kind. I hope your travels are going well and I’m so glad parts of this blog have helped you gain more understanding of Autism. I am not and expert, and every autistic person is very different, but I wrote the blogs to give people an insight, so I am thrilled by your comment. Writing is helping me to begin to understand myself, I had no idea how therapeutic it was going to be when I started writing. Thank you again, and if you ever want to suggest a topic for a blog, let me know. X

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  2. Wow this explains the difficulty wit changes that I find wit myself at times and especially Tyler bless him ! Whoever has u for their teacher is so lucky ,I’m sure if my Tyler had had u he wouldn’t of struggled as much at school , it was very sad and an emotional time before Tyler got into Waterloo School (special School) . This was the making of him . Xxxxx

    Liked by 1 person

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