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Change and Why It Is Hard for People on the Spectrum
Change is often not easy for autistic people to deal with. It can sometimes be the point to where they may respond to sudden changes with isolation, aggressive behaviours, repeated behaviours or tantrums, as according to Seattle's Research Hospital Research Foundation.
The SRHRF also reports that autistic people can be hypersensitive to change because they heavily prefer structure and what to expect during the day.
With me, when I was younger, this was especially the case when I expected something big and positive to happen.
For example, if I were to go to a store or restaurant only to discover that it has recently closed down, I would've thrown a fit as a child. Even today, when stuff like this happens, I get bursts of anger or disappointment inside, even though I don't actually act them out in public.
This goes back several years, but I remember when my local mall's food court had a smoothie stand. I go there one day months later (when I was finishing my college studies) only to discover it closed down a while ago. I was like, "No!"
I get so used to accepting things as they are that if they're suddenly taken away from me, I go into shutdown mode, sometimes more than the average person.
Examples of Stuff Related to Change That Can Trigger Autistics
According to Raisingchildren.net.au, some changes that can distress people on the spectrum include moving from favourite to least favourite activities, leaving the house, having visitors, doing things in a different order, school-related changes, cancelled activities, being unable to finish activities, and trying new things.
How did I cope with these things throughout the years?
Favourite to Least Favourite Activities
Of all things about change, this was perhaps my biggest struggle as a child.
If I wanted to play a certain computer game for an hour, and my mother wanted me to go to the basement to play with a board game I had no interest in with my brother downstairs, I would throw tantrums.
In addition, one memory I recall clearly from when I was six, me, my brother, and some of my mother's daycare kids would often build Thomas train tracks in our living room.
I always wanted to build my tracks a certain way.
I had this rigid rule that there must be a bridge and a track must go under the bridge every single time. My brother and the daycare kids didn't always do that.
I remember talking about it once with my mother years later when we were looking back at old memories, and she said "me and my brother used to fight like cats and dogs with those train tracks".
To say the least, my preoccupation with having things done a certain way and with little change did not always make me the easiest person to play with in any indoor playroom or outside.
Over time, I learned to be far less rigid with this kind of stuff and accepted people's varying types of creativity.
Leaving the House
This was not as much as an issue for me as moving from preferred to least preferred activities, as I generally loved to explore the outdoors and public places and was even fascinated by various places in my area.
However, if the "moving from preferred to least preferred" was added to the formula, or if the less preferred activities had to come first, especially if unexpectedly so, problems would arise more often than not.
For example, if my father wanted me to take a big box store and a bowling alley in one trip, I would get annoyed at going to the store first or if the bowling trip had to be cut shorter than expected because we had to go to the store.
Having Visitors
Usually, this was not problematic for me, even if they were visitors I didn't want to have as much because I would almost always knew they were coming over anyway.
However, whenever a playdate had to get cancelled, or if my relatives couldn't show up to my house as planned, this would cause some upset in me.
Doing Things in a Different Order
Going back to the big box store and bowling alley example, order is another thing that is big for me.
Too often as kid, I was fixated on going first in an activity.
For example, in my very early school years, if my therapists told me that I had to do my work first before we play games or go outside, I would get angry and demand to do my activity first.
Little did I know at the time that doing things we don't like doing can pay off and we get rewarded with good things in the end, but if I refuse or act out, I won't get the activity I want to do. My parents, therapists, educational assistants and teachers would often teach me this, too.
School-Related Activities
School was a prime example of a time where I would have difficulty with changes.
If a person I was friends with befriended someone who didn't like me much, I would feel increasingly withdrawn, much more so than the average person. I expected them to be friends with me with little deviation (not that they weren't allowed to hang out with other kids, but rather if it was certain people they talked to).
I was also stuck on sitting at certain spots or working with certain people, or sharing activities I was very into such as the computer.
However, I got much better at this over the years.
Fast forward to Grade 12, I participated in an Inside Ride challenge to help with cancer research, the school originally scheduled the event for mid-April.
Everything was set up well and then something happened (it was over a decade ago, so I don't even remember exactly what it was). This meant the event had to be postponed for a month.
A couple of teachers I had were concerned about me that day because they know changes are difficult for people on the spectrum like me, but they were pleased that I handled it well. I was disappointed, like virtually everyone else, but not mega-stressed.
Cancelled Activities
If there was a word I dreaded a lot in my childhood, even if I didn't express it much, cancelled would be it.
Even with activities I wasn't super fond of, part of me would still feel this "this sucks" feeling when encountering the word or knew an event was not happening, especially when others showed disapproval about the change.
For instance, when I learned that the 2004-05 NHL season was cancelled, I was like, "That must be a blow!"
Of course, 15 years later, when COVID came and altered so many people's lifestyles, the whole cancelled concept hit me harder than ever.
Planned family get togethers? Cancelled. Outdoor festivals? Cancelled. School field trips? Cancelled. Face-to-face work functions? Cancelled. Some sports leagues? Cancelled. This stuff was on my mind constantly a few years ago.
Being Unable to Finish Activities
"You won't have time to finish this or that because we got to do this." Did anyone else get more anxious hearing that phrase? This was also me in a nutshell.
For example, if I wanted to finish something particular in a video game I was playing, but I had to finish my homework, blah.
Trying New Things
I was often very particular about what I wanted to do growing up. If I wanted to go to the park, that's what I expected. If I wanted pizza for dinner for the third time in the past two weeks, that's what I expected. If I wanted a certain ice cream flavour, that's what I expected.
A fairly strong memory I have related to this was when I was six, we went to a hotel in Niagara Falls for a few days. I enjoyed going there especially since this hotel had an indoor playplace.
About a year later, my parents told me we'd be going to Niagara Falls again. I naively thought we'd go to the same hotel because they didn't provide many trip details.
This time, we went to a different hotel that was on the U.S. side. I was sobbing in distress for at least an hour once we got to our room because it was a different hotel and it didn't have everything the previous hotel had (the second hotel was still a nice hotel from what I remember, and I learned to like it at the end).
A few months later, my parents made it up to me by going back to the first hotel, though, which made me feel much better.
Strategies Adults Can Use to Help Autistic People With Sudden Changes
Let Child Know In Advance
Pay close attention to what the child is interested in and what they are adjusted to in their everyday lives.
Although extreme unexpected changes (such as accidents, worse weather than expected, illnesses or emergencies) may be inevitable at some points in a person's life, when you have time to let the autistic child know that things may not go as initially planned, it will be important to let them know in advance.
My parents and other adults who worked with me were often very good at this, so it's not like experiencing unexpected change distress was something I had to experience on a too-often basis.
For example, if I wanted to go to an amusement park such as Canada's Wonderland on a certain day, my parents would warn me that forecasted weather might interfere with how long we stay there. They did, however, make sure that we would at least get to spend part of the day there.
There were a couple of unlucky trips due to bad weather that I won't go into detail about in this post, but you can check one of them here.
Create Schedules
Because adults who worked with me in my early days recognized that handling change or unexpected routine fluctuations would result in extreme negative emotions for me, they would often create visual schedules of how my day was going to go and would ensure that they would be strictly met. This way I had time to mentally prepare for my day.
Activities I'm not fond of or having to end things I especially enjoy doing weren't as bad if I had to time accept it before the changes occur.
For example, on occasions, adults would come up with things like, "Thursday is my day for computer", or "Tuesday is your day to hold the door at the end of recess", to ensure that I don't get too rigid about these types of things.
Combine this with my love of calendars, and this was for sure to work well with me.
For the above reasons, I highly recommend creating visual schedules.
When an Unexpected Change Occurs
So the unexpected happens and the autistic person is upset? What should I do?
The following has worked well for me in the past:
Make it up to the person: Ensure that the child will get to do the thing another day, and perhaps make that day even better than the child expects, to make this sudden change an even more distant memory.
Calmly explain why it has to be: In life, we won't always get what we want. However, we also realize that everything happens for a reason. The more the person realizes there is a good reason behind the change, the easier it will typically be for them to cope.
Introduce them to something even better: Sometimes, if lucky, the alternative can be even better than the original planned activity. In this case, a person's mood can go 180 in a good way.
Try calming techniques: If the distress is to the point of crying or intense anger, practice using breathing or meditating techniques with them.
What Autistic People Can do to Cope With Changes
I'm autistic myself, and I'm struggling to prepare or deal with changes? How do I make this easier?
Think of possible best and worst case scenarios. What could possibly go wrong with exciting occasions you have planned or more difficult occasions? Try this exercise below and come up with some ideas that involve your favourite hobbies or situations that may make you anxious.
Booking party at winery for a Saturday
Best case scenario: Having the best time
Worst case scenario 1: Place overbooked
Worst case scenario 2: Business shuts down
Golfing trip
Completing third video game home world
Struggling with essay
Conclusion
If people working with autistic people understand how to prevent changes from triggering episodes and if people on the spectrum themselves brainstorm possibilities, inevitable plan changes will be a lot less stressful.
If unexpected changes, it's best to review various coping strategies to leave the bad memories behind as much as possible.
Change is not easy for autistics to deal with. We enjoy our structure. Sometimes, however, things won't always work how we want them to work out.
Therefore, it's important we mentally prepare for lots of outcomes.
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