I’m sure at least some readers will have seen posts or tweets over the past few years where family members are desperately trying to locate affordable replacements or continuations of items that their autistic family members use because even the suggestion of changing them can bring about a meltdown.
There’s usually a lot of sympathy for everyone involved within these situations and people search far and wide on behalf of people they’ve never met to try and help them. Which is fairly cool when you think about it.
Then there’s usually some discussions around how so far people should reinforce the rigidity of preferences because what will happen when something the individual wants is truly no longer available, despite the best efforts of social media campaigns.
Part-way through last year I had to deal with a situation where an item that was a key part of my day-to-day routine stopped being available. I almost exclusively drink sugar-free lime squash – around 4-6 litres per day. I’ve written before about my difficulties around interoception and staying hydrated, and now this drink is a key part of my routine – I buy the 2L bottles in sets of 10 and generally buy 10 more once I’m down to my last 3 or 4.
Last year there was a fire at one of the factories which produced all the lime squash for the supermarkets in the UK and for weeks there were no bottles available anywhere. I began to get incredibly anxious by the time I had 2 bottles remaining. I sent in a query to Tesco and Sainsburys to see if anyone knew when they were likely to be back in stock. I was informed by Tesco that their 2L bottles were being discontinued as part of stream-lining their range. Since I was still waiting to hear back from Sainsburys, this news followed by then running out of lime squash left me in one of the situations I mentioned above…
Had I, by not challenging myself to at least try to be less rigid, put myself in a situation where my health was potentially going to suffer? I had created a routine to help myself health wise in the first place but in creating my routine, had I become over-reliant on it?
My bottles of lime squash ran out but Sainsburys got back to me to let me know that their 2L bottles would be back in stock within the week. For the remainder of that week, despite my best efforts, my fluid intake was probably a quarter of what it usually was and I suffered the various expected side-effects of not drinking enough fluid. Even though I could reason to myself that I needed to drink and that at least I knew I wasn’t going to have to go without lime squash forever, my routine was so rigid and established that I struggled to break it to make a new one. I struggled to self-regulate and I spent most of that week on the verge of a meltdown – over bottles of sugar free squash. That was the most ridiculous part of it for me, wanting to be able to reason my way through it all to a resolution but just not being able to.
The first thing I did when Sainsbury’s restocked was to buy 10 bottles of lime squash from each of the stores within driving distance and put them into the cupboard under the stairs. (Yes, my partner is very patient)
In the time since then, I have done my best to increase my flexibility about my fluid intake including sometimes deliberately not taking lime squash to work so that I have to drink just water. It’s not that I can’t drink anything else, but the same thing seems to happen – fluid intake drops and health takes a hit. So, I’ve ended up back in my old routine because it works for me and it keeps me healthy, but there’s now that little thought that bugs me from time-to-time about what I’m going to do if the next time, they really are discontinued. Truthfully? I don’t know what would happen but I just hope that eventually, I would be able to establish some kind of new routine.