Autism and Change Effort
We live in a world of constant updates and new technology. My father, who I suspect was also autistic, loved computers. Many autists do. Many of them work in technology fields and find these kinds of changes exciting and not at all threatening, frustrating, or just tiresome. But it is one of the textbook “symptoms” of autism to struggle with change, and for me, changing technology requires a great deal of effort. I’m always trying to decide if the best choice is to get the very newest cell phone so that it will last longer and I won’t have to switch over for another five or six years or to get the one that is most like my current phone so that the change effort is smaller for right now. I tend to go for the latter.
Change effort comes up in multiple ways in my life. For many years, one of the hardest things for me was trying to figure out how to sleep in a hotel room. Hotel rooms were so different from my house. Obviously, the sheets and bedding were different. And I tried on a few occasions to bring a pillow from home with me to make it feel better. I eventually figured out that a sleep mask and ear plugs were a way to sleep better because they helped me cut out sensory experiences that disrupted my ability to let go and fall asleep. I eventually started using them at home, as well, and I sleep better now.
Change is distressing to my autistic self. I need to know what is expected of me so that I do the right things, say the right things, look the right way, on and on. I’m not at all sure anymore if this is a symptom of autism or the result of autistic trauma because I spent so much of my life being punished or harassed or bullied because of my difference and now the only way I feel safe is to constantly try to figure out what “normal” is so I can hide and be as invisible as possible so I don’t get hurt in the variety of ways that I was hurt as a child.
But there is also the very real sensory distress that happens a lot of the time and that I have to spend a good deal of energy trying to counteract. So it’s probably not just trauma. It’s a messy mix of various things that causes me to hate change and to react in a way that is clinically called “rigid” when I’m asked to change.
I’ve spent most of my life trying to create schedules and habits that make it so that I can survive and even do well in a world that is designed NOT FOR ME. For most of my life, I hated “vacations” because the idea of leaving my bubble of safety was not at all a vacation for me, but the worst kind of work in the world — and added to it was the frustration from other people that I wasn’t “happy” about vacations that they enjoyed because of the extra work I was doing, including the work of making sure that they didn’t see how much work it was to have fun on a vacation.
Asking myself questions about what self-care is, what I find fun or relaxing, and such can also be distressing for me because these are not questions I’ve ever been allowed or allowed myself to ask. How can I survive? How can I look normal? How can I make the world other people have designed for themselves not hurt me? How can I be able to feel safe enough to fall asleep at night? How can I find food that doesn’t hurt me to eat so I don’t starve to death?
Change effort is real for autists. It’s something other people laugh about or get really angry about when they have to deal with autists. If I have one suggestion for neurotypical people about dealing with this, it might be, get curious. Start asking questions. If you can start to see how hard it is to live in the world every day for autists, maybe you can start to see why we don’t get excited about changes that we didn’t get to pick. As for me, the autist, I will go back to trying to figure out if it’s better to get a new battery for my old phone so I don’t have to get a new one, or if I have the strength today to expend toward change that other people take for granted because they live in a safe world all the time.