Dealing with change: an autistic person’s perspective.

Change is inevitable. It is a part of life; but very often it can present tremendous difficulties. This is the case regardless of whether a person is neurodivergent or otherwise.

Very little in life turns out exactly as we initially hope for or expect. Even the best-laid plans of mice and men often go awry, as a famous poet once pointed out. You can make arrangements for an event long in advance, only for a last-minute occurrence to change the game entirely. Particularly when you had been excited about something playing out in a certain way, it can be a real challenge to let go and accept the new reality of the situation, adapting to the circumstances. For many of us, this kind of last-minute change can be shrugged off as mere happenstance as we move on with our lives, perhaps laughing about how wrong we were or what a silly misjudgement we had made.

On a scientific level, going back to our genetic roots, we are naturally equipped to deal with such changes and to improvise in the moment. Our brains are wired to react in a certain way when a dangerous predator appears on the horizon. To be precise: we run and hide. This ability to improvise has allowed us to not only survive but to establish ourselves as a race quite unlike other animals on earth. We learn to place more emphasis on direct threats and less emphasis on negative changes that are ultimately more inconsequential, such as having to deal with a car breaking down. Our survival instincts help us to carry on in the face of life-changing scenarios: they help us to fight illness, provide us with the strength to move on with our lives when our family members pass away and encourage us to procreate in order to continue the species.

However, if you are on the autistic spectrum, dealing with change on a daily basis can prove to be a struggle far beyond the difficulties neurotypical (non-autistic people) face. This is because there are so many other factors to consider, depending on the individual, their circumstances and how their autism affects them personally*. A key element here is Anxiety, and the relationship many autistic people have with Anxiety disorders. Whilst Anxiety and Depression can affect neurotypical people as well, a number of autistic people find that they are constant companions (more on Depression later).

The result of this is that many autistic people experience self-esteem issues following many years (or perhaps even a lifetime) of social rejection. They may also feel permanently exhausted after having to mask their autistic traits on a daily basis. It’s not always so easy for autistics to just to shrug off what may seem to others to be minute, casual changes. Even when we appear to be coping well on the outside, we may, in fact, be having a very different experience internally as our minds whir and our hearts race. Sometimes we do not immediately understand our own feelings and reactions to a given scenario. Many autistic people also live with a condition called Alexithymia, which affects our ability to process and relate to emotions, including our own.

In any situation involving other people, there are always multiple agendas to consider. When people cancel plans at the last minute, it may be very hard for us to understand why. Have we done something wrong that has offended them? Do they no longer like us? Is their any malicious intent behind their actions? Or it is really as simple as this being just an unfortunate happenstance? It is well-known that people often do not say what they mean or say what they feel. If somebody cancels a date or responds to an invitation with what appears to be a lack of interest, then they might either be hiding their true feelings in an attempt to not upset the other person, or they might be expecting the other person to pick up on their lack of unspoken interest. It may even be both of these things! But telling which is which as an autistic person may be nigh-on impossible. The intricacies of online communication further complicate this matter.

This is where Depression comes in. Many of us autistic people are quick to blame ourselves for what we see as our social deficiencies. We berate ourselves for not being able to read the signs or recognise the turning tables. No matter how hard we try to learn from our mistakes, the same scenarios seem to repeat themselves. Our mental health suffers as does our self-esteem.

I have found that it helps a great deal when you have time to prepare in advance for an upcoming change; however, this is unrealistic as the majority of changes that occur in daily life are unexpected. Autistic people’s responses to change might range from a person being unable to deal with even the slightest alteration to their daily routine without it causing a panic attack, whereas another individual might internalise their struggle only for their emotion to later manifest in the form of a large (and sometimes public) meltdown, where months of unaddressed emotion are released in one spectacular burst. Many of us like things set in stone and like to do things our way, in our time and manner, whether that be eating breakfast at precisely 8am every day or watching the same program religiously every night. We might choose to watch a movie in our leisure time that we have already seen countless times instead of trying something new because we know that we will always find solace and comfort in that activity.

Before I discuss my own experience, I want to mention the fact that, so far, this piece has focused primarily on negative change and a person’s reaction to it: there can also be positive change. Sometimes changes that seem negative at the time may be positive ones in the long-run and vice versa. I believe that, when we as autistic people are trying to make a positive change, or when a positive change is on the horizon, we may exhibit an incredible amount of passion and excitement in pursuit and anticipation of that change, bringing out the very best qualities in our autistic selves.

The last year has been full of dramatic alterations, affecting the way in which all of us are living our lives. It has shaken the very foundations of societal norms. In fact, we have actually seen a great deal of aversion to change from non-autistic people in positions of power who, desperate to get things up and running again in a way that resembles old normality, have made more than a few very questionable decisions. Neurotypicals may be more adaptable to change, but they can still be unwilling to make changes.

To many autistic people, the opportunity to isolate and social distance has been a welcome one in spite of the terrible situation that has accompanied it. However, many individuals who were already isolated in the first place have become even more so as a result of this pandemic, and the stress involved with living in such an uncertain world has taken its toll on all of us, myself included.

My life is currently on the brink of a great change for which I am very excited. It has been a long time coming and I’m hoping, touch-wood, that all turns out as planned. The promise of this change is keeping me going in a difficult time, but the pessimist in me is sometimes hard to silence. Everything in life is, of course, wrapped in a layer of uncertainty.

Last week presented me with a number of scenarios that brought out the best and worst of my autistic traits. On Wednesday last week, I cut off my long hair. I am both happy and unhappy about this, and the change is not going to feel normal to me for some time. On the one hand, it had become damaged enough that it needed to go, and I had prolonged cutting it off because of my (literal and mental) attachment to it. It had become part of my identity, in spite of whether anyone else liked or didn’t like it. For that reason alone it was perhaps worth letting it go to see what remained of the person beneath it, and though I will very likely grow it back at some point in future, I’m currently enjoying the lack of styling woes that accompany shorter hairstyles. Many autistic people have problems with haircuts and the experience of them. In my instance, I just like the hippie look. Shoot me, boho-haters.

The following day brought about a much bigger change to accompany the one I was dealing with: my little dog became ill. I’ve always felt a great deal of attachment to animals and like many autistic people find them easier to relate to than other humans. For my dog to become so unwell was a terrible shock and one that brought with it many emotions: uncertainty for his future and fear for his welfare, pure anger that something so bad could happen to such an innocent, young creature, and pure grief thinking about worst-case scenarios that might occur. Fortunately, it seems that my dog is in fact recovering well and is expected to live a full life, but these huge shifts in a short space of time affected me dramatically. I hope sharing them gives you a little insight into how some autistic minds react to change.

If you’ve stuck with me this far, let me end with this:

No, his mind is not for rent
To any god or government
Always hopeful, yet discontent
He knows changes aren’t permanent
But change is

-Rush, Tom Sawyer (1981)

*It’s always important to remember that autism is a spectrum, meaning that no two people will experience things in exactly the same way, even if there are sometimes similarities between two different people’s experiences.

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