Autism vs. Unexpected Changes –The Battle
By Rose Hughes, Bened Life Neurodiversity & Disability Specialist, diagnosed ADHD/Autistic.
For me, some of the hardest words to hear are: “change of plans”. In spite of my inner masking tactics and desperate need to adapt efficiently, I cannot control that I am AuDHD. Changing plans, big or small, sends me spiraling. I have always, being 31 years old, told myself that it’s okay, and to give myself grace when this happens, but it’s easier said than done. Let’s explore.
AuDHD and Planning
For context, I was diagnosed at 23 with autism, and ADHD when I was 12. This is what I am referring to when I call myself AuDHD. It’s a rather extra spicy blend of the two diagnoses, let’s just say. So when things happen that I am not prepared for, I do not have control over how it impacts me.
I am someone who is both CHAOTIC and organised all at the same time. I need lists, multiple calendars, more lists, pre-planning, colour coordination, a well thought out exit plan… I often need to look something or somewhere up to gain a visual idea before I arrive. I am very minimally spontaneous, and I spent many years trying to ‘fix this’ rather than accept it, like I have now. I need structure, but I also need new and exciting - in a kind of cyclic routine.
When Planning Doesn’t Go to Plan…
“Hi, so your weeks of meticulous planning and detailed scheduling are now in fact completely not going to work out, and you need to instantly adapt to the new plans.”
P A N I C. Even if I am not showing it on the outside, inside I am spiraling and battling doom thinking. All of a sudden I can’t make any rational decisions, I can’t see straight, my body feels tense and tight, I sweat. My face goes red. I need to get somewhere alone, without noise. My patience goes out the window, and I can’t catch my breath.
Once I have given myself the time to process that change is happening, even if it’s good news, or exciting, I can begin to untangle my thoughts. This is something I have perfected over the years now that I understand what is happening to me, but it certainly wasn’t easy.
As I’ve gotten to know myself, and ADHD/autism, I have learnt that I cannot stop how react internally, but I can learn to live with it. That was MY OWN form of adapting.
Now when someone gives me the news that my plans are changing, I know that, Okay, I need to get away, and process this on my own without stimuli. Then I can work with the change and adjust to it.
For example, consider a minor inconvenience to someone who has made plans, and is heading out to take a train. On arrival at the train station, their train is canceled, and the next one isn’t for an hour. This means they’ll be an hour later than planned, and have less time at the destination than expected. It may also inconvenience someone waiting at the location they are heading to.
A simple text or call to let their friends know, and searching around for somewhere to go and wait until the next train -- this response to the unexpected change seems logical and easy. But… for someone like myself, this process isn’t so easy. Something about the sudden change, the inconvenience, and changing what may have been thought out and planned days or weeks in advance, is too hard to instantly process.
Adapting to a canceled train can be so overwhelming that indeed, I have been known to completely give up on my plans and head back home.
My Coping Strategies for a Change in Plans
I used to fall apart, and that is okay. It’s not my fault that I do not cope under the pressure of sudden changes. However, indeed now that I understand myself better, I can take myself off and decide.
In this situation I often go outside and find a quiet corner. Maybe text the person I am meeting. If they still want me to come and are understanding, I will consider waiting and catching the next train.
But if, and this happens often, I am feeling exhaustion from the energy it takes to go through this processing time, or ‘after-shock’ as I like to call it, I will likely apologise and head home.
I have been known to lose myself completely, and head home without telling the people I am meeting. That is also why it’s important to have these things practiced and planned out, and make sure the people you make plans with understand you. I know to let someone know, because they may worry, but in the blur of it all, that can go forgotten.
The after effect of such a reaction, for me at least, can be days of silence, and exhaustion, and needing to ignore the outside world. It just takes over me, and even though I am home, safe, and the situation is defused, it can replay in my mind, or make me feel guilty, or simply just tire me out.
It makes leaving my house and making plans somewhat more anxiety giving and nerve-wracking because I know all of these possibilities are so real. Over-thinking it causes me to panic before I have even attempted to leave my home.
Helping a Neurodivergent Person Deal with Change
Everyone is different, and this is purely my own experience, not a one size fits all generalization! But, if someone is caring for a neurodivergent person, I think it’s equally as important to understand how they might be affected by change.
If you take my canceled train example: imagine that an Autistic person wants to meet a friend, and a carer is coming along to make sure they get there and are safe.
The carer needs to be equipped to help the Autistic person if there are changes of plans. Taking them instantly somewhere calm, quiet, and away from everything and giving them time to calm down, maybe without even speaking, can likely defuse the situation. Being patient and calm, and waiting until it seems appropriate to ask if they want to wait or go home, can make the biggest difference. And accepting that if they want to go home, or seem suddenly very tired, it’s better to do so.
The best thing in any situation with change, even when it’s for the better, is to take it slow. Get away from too many stimuli and allow yourself to do what’s right for you. Or, for the person you are caring for. Guilting myself into waiting for the next train, arriving in a state, feeling too tired now to socialise, and so on, only and always leads me to a bigger melt down later on.
Be Kind to Yourself!
In life, change is unavoidable. Life doesn’t always go to plan. We can’t always predict, control, or navigate the inevitable bumps in the road. But with some understanding, patience, and tools, we can at least reduce the impact it has on us, or those we care for.
You deserve that patience, grace and understanding, and you deserve to still enjoy things in life. The world is not built for neurodiversity but that doesn’t mean we can’t still have our own version of life.
I have found it’s taken me a long time to give myself this patience. But in order to work with my needs, I have to equip myself in this way. We all deserve the same love we give others.
About the author:
Rose is a Neurodiversity and Disability Specialist at Bened Life who is based in Belgium. You can follow her on Instagram at @rose.llauren.
Recommended reading:
An Autistic Person’s Guide to Travel (Airline Style!)
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