Navigating my relationship with change
A Guest Contributor shares reflections on their experience of change as an Autistic person with ADHD, and explores how they can be supported to navigate life’s inevitable changes.
Change can be the stuff of nightmares for Neurodivergent people. We often rely on structure and routine, especially when life feels particularly hard, as the only things that feel consistent and within our control from one day to the next. I find comfort in activities that feel safe and predictable, like watching the same TV show on repeat, so I structure my days and even my mood around these things. When routine changes and I lose the thing I was banking on feeling safe, it can feel as though all of the stability I have built around myself is suddenly uprooted. Change can be really scary and upsetting and it leaves me not knowing what to do with myself- this can disrupt my whole day and my ability to regulate my emotions because I don’t know how to feel or how to act.
During times when I am already struggling or overwhelmed, experiencing change can often be the catalyst to a meltdown or shutdown. I feel anxious, and my breathing starts to pick up. My heart starts to pound, my chest gets really tight, and I might start to dissociate and detach from reality. Things feel floaty, and I can’t hear very well: my mind is trying too hard to shut down that I forget where I am or who I am speaking to. My emotions can be unstable and so I go from happy to sad, to angry, to scared all within a minute. When this happens, grounding techniques can help. I know for a lot of people the ‘5-4-3-2-1’ grounding technique is helpful, but often for me I have to just ride through the experience once I am in it. Other people can verbally reassure me and sometimes just knowing someone is there with me can help.
“I frequently feel like I am being pulled in different directions: the Autistic part of me wants to follow a routine to the minute whilst the ADHD part is unpredictable and impulsive.”
There are a lot of stereotypes around Autistic people being unable to handle change. Whilst this can be true, there are also Autistic individuals who love change and there are those of us who are Autistic and ADHD. I frequently feel like I am being pulled in different directions: the Autistic part of me wants to follow a routine to the minute whilst the ADHD part is unpredictable and impulsive. I want to know what I am doing, when I am doing it and how I am doing it. I will spend hours in bed planning the next day out in my head, but then my mind goes to somewhere else, doesn’t want to listen to the plan and just wants to do something random! It can be really demoralising when this happens, and it often leaves me feeling useless or lazy.
For loved ones or professionals working with Autistic people, getting to know us as individuals, including the coping mechanisms that we find helpful, can help to make for calmer handling of inevitable changes. For example, if something is running late, acknowledging the situation and the change in plans is a good start. Then you can help us to try and make steps or a plan to deal and cope with it. Focussing on the facts can be very important: we are running late, but the meeting will still be going ahead, and it will take us 15 minutes to get there. These are the facts. Reassure us: this is stressful, and this is hard right now, but it’s not going to be the end of the world, and we can get through this and make a plan to do so. This gives us a bit of structure to hold on to until normal services are resumed.
“Change is an inevitable factor in life but, when surrounded by those who can help and support you, it doesn’t always have to be something that fills you with dread. ”
When it comes to bigger or more significant changes a lot of people like to be given as much information as possible, as soon as possible. This is a good example of how each Autistic individual is different, because for me I don’t want too much information until the month before- if I get it all now then I will just spiral and be worrying about all of it. It’s about finding the sweet spot of having enough time to prepare, but not too much time to have a panic attack about it.
On the outside, to a non-Autistic person, change might not seem like ‘big deal’. For Autistic people it can disrupt our whole centre of gravity, cause anxiety and meltdowns and sensory issues that can spiral into even more struggles. You might not be able to put yourself in our shoes and it might seem like our reactions are ‘overkill,’ but appreciating that many Autistic people’s lives depend on structure and routine in order to function is really important. Change is an inevitable factor in life but, when surrounded by those who can help and support you, it doesn’t always have to be something that fills you with dread.
