Yesterday was World Mental Health Day, and late in the evening, as I was fretting over wanting to write two different posts linked to mental health and one about something else, with very little time left of the day, I decided to allow myself to fail. I completed a post on our instagram, and then called it a day (or night, to be more accurate). I didn’t do a post here, for the blog, which means I won’t be able to say I completed the ‘Blogtober’ challenge of making one post per day for this whole month.
I felt that of all days, World Mental Health Day was not the day I should push myself to the brink of absolute exhaustion. A few years ago I burnt myself out, trying to do too much, and since then I have to watch myself more carefully so I don’t do more damage to my brain (this video gives a good few insights into the effects stress can have on our brains).
I didn’t burn out because my life was so much more stressful than everybody else’s. Well, it was definitely very stressful, and I probably had more to deal with than many others, but I know that there are also many who are dealing with a much greater amount of stress in life than I was, and they still manage not to burn out. The thing is though, we all have different abilities, and that goes for coping with things like stress, too.
One thing about Penguin which took me a terribly long time to fully grasp, is how stress affects him. Studies have found that many autistic people have a higher base level of stress hormones in their blood (as explained in this post by Bill Nason of Autism Discussion Page) and that is part of the reason why they’re often more prone to reach a level of stress which is too much to cope with (which may then result in a meltdown or shutdown). Sensory processing issues, which are also common in autistic persons, can often add stress too, and might actually be the reason why stress levels are constantly higher, although I’m yet to come across any research confirming this.
What I mainly meant to write about in this post though, is something else which can cause great stress, anxiety and upset, and that is CHANGE.
As I already said about coping with stress, we all have different abilities. There are things in life that we’re good at and other things we struggle with. Change is something which is commonly a struggle for autistic people, but it’s certainly not exclusive to the autistic experience. I think there are many of us who often find change stressful and difficult, especially when that change is unexpected and/or a change we wouldn’t have wished for.
It seems to me like changes are too often made without much consideration to, or consultation with, those who will be affected. And that many changes are made without a clear purpose, seeminlgy without much thought, and perhaps just for ‘fun’?
When a company that produces food decides to change their packaging, and/or the recipe for a certain product, do they consider that for some people this might be one of only a handfull of foods they see as ‘safe’? When an amusement park takes away an old ride to replace it with a new one, do they consider that for some, that particular ride which they removed was something which used to be the very highlight of their visits to this place? When a sports manager buys in new players, does he consider what that change might do to the ‘team spirit’? When a company moves to new premises, do they consider all aspects of change for their employers? And so on…
I do realise that some changes are inevitable. But I wish that people wouldn’t be so quick to make unnecessary changes, ‘if it ain’t broke, don’t fix it’! I wish that people would weigh up the pro’s and con’s of change, consider the effects properly, consult with those who the change will affect, and above all provide information and time, before a change takes place, so that people can have a chance to be mentally (and if need be practically) prepared.
The person who’s special food will be changed could then stock up, and gradually get used to the new formula while also having access to the old ‘safe’ version. The person who’s favourit fairground ride is getting replaced could make arrangements for a farewell visit, and then be mentally prepared for next season instead of upset and disappointed. And so on.
One environment where I feel it is particularly important that changes are discussed, prepared and informed about in advance, is in schools. Even more so when there are children with additional needs involved, but either way I think it shows respect for ALL parents and children when changes aren’t just sprung on them, without warning.
We homeschool now, but when Penguin was at school, there were changes happening on a regular basis; new seating arrangements, new routines, new classmates etc. Some of these changes were probably good ones and done for a good reason, but the lack of information and consultation ahead of the changes, created unnecessary feelings of uncertainty, stress, anxiety and mistrust. And I have heard many much worse examples from others, so this is not meant as criticism towards a specific school.
Another example of how change can affect us negatively, and something which I’ve only recently become aware of how much it actually affects both Penguin and myself, is last minute change of plans:
One Saturday a few weeks ago, for example, we were supposed to make a visit to a place which is about an hours drive from where we live. Due to various reasons we got delayed, and realised as we were on our way there, that we would probably turn up too late. So to avoid possible disappointment at the end of a fairly long drive, we changed our plans and went somewhere else. A nice place that we’ve been to before several times, and where we usually have a great time. But this wasn’t what we had planned, it wasn’t what I had had in mind for the day, and it wasn’t what I’d been showing Penguin photos of earlier in the day (as preparations for our visit, to make clear to him what our plans were).
So due to our last minute change of plan, I was disappointed because we weren’t doing what I’d had my heart set on for that day, and Penguin was confused about why we weren’t going where I’d been telling him about all morning. And the rest of our day was pretty much a disaster, with Penguin getting upset and lashing out.
I think I’ve always liked familiarity, sameness, a degree of stability. But I also think that my ability to cope with changes is lower now than it used to be, because of my higher sensitivy to stress. I think I’m now living with that higher base level of stress, similar to what as mentioned above is the case for many with autism. And with that higher base level of stress comes a greater need for stability and control.
Of course, there are times when change is a good thing. It might be difficult and stressful to go through, but necessary in order to make things better when they’re not good enough as they are. We moved from Sweden to England at the beginning of 2017, and that has of course been a massive change. We found ourselves in a situation where everything needed changing, and although the process of moving was and has in some aspects continued to be a great source of stress and difficulties, it has come with some huge positive improvements. So in this case, the stress of change was necessary and has been worthwhile.
This post has been a bit of a ramble (and I’m not quite finished yet!), but my main point is this: Please consider those of us who struggle with change. Don’t change things around without good reason. Take time to discuss the changes before making them, consider not making them at all, and if they need to be made, please make sure that those affected get informed well in advance, so they can prepare themselves and process the upcoming changes. Thank you.
The title of this post, ”Please don’t change”, is also a line in a song (called Primary) by The Cure. This summer, I’ve rediscovered my love for this band, who were a big and important aspect of my teens. And something which I’ve taken more notice of now than back in the 90’s, is Robert Smith’s apparent aversion to change. The wishes for things to stay the same, the pain of changes and endings, those themes are frequently reoccurring. And then there’s his physical prescence and appearance, which also has remained almost unchanged througout most of his adulthood.
When I saw the BBC broadcast from Glastonbury this summer, I felt so delighted that The Cure sounded so similar to when I last saw them live, at Roskilde festival in ’95 (I was 18 then and will be 43 later this month, so it been a fair while!). The relative abscence of change felt comforting, in a world where few things have stayed the same.
And I took notice of how often the songs included some kind of begging for people and things to stay as they are, or lamented over how things had changed, or was inevitably going to change. I feel that I can identify more deeply with many of the songs now, than when I was a teenager (and somewhat more change-happy).
There are on the other hand at least a couple of songs in which Robert Smith sings with great passion that ”oh oh oh I want to change it all” or that it’s a perfect day to ”kiss it all good bye”, seemingly going against that wish for things to remain the same. But those songs are, I think, still an expression of not taking change lightly. The subject of change is still something very dramatic, substantial and significant, a subject worthy of writing songs about.
Of course, I’m reading things into the songs based on my own thoughts and feelings. But I think that’s perhaps what great music is about, to some extent, isn’t it? Being able to relate the songs to our own experience, making them part of our own inner life, our inner voice. And right now, that voice in me is frequently howling ”Please don’t change”.
Thank you so much for reading, I’d love to hear your thoughts in the comments! x
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