The Coronavirus pandemic has disrupted daily life for almost every person around the world; especially daily routines. Routines are a good thing, since the predictability can be comforting. For many, changes to routines are frustrating; but are usually seen as positive, creating novel changes. But for autistics, daily life without routines is challenging. Autistic individuals live in a chaotic world, constantly trying to make sense of their environment. Routines act as powerful rudders, creating order out of the cacophony of stimuli. Predictable routines become mundane for many, but autistics thrive on routines and dislike uncertainty. In the world of autism, predictable routines are used to calm and self-regulate anxiety, making it is easier for an individual with autism to effectively interact with their environment.
So, what do change in schedules, face masks, and virtual meetings have in common? They all can introduce chaos and unpredictability. This article began as an outline of how to maintain routines during this disruptive time. I, however, started experiencing anxiety and frustration with my daily life and wanted to know why. Being a researcher, I began collecting data on my daily life, turning my chaos into research. The research project turned into great teaching moments; and I thought if I am charting an effective path through my disrupted daily life, my results may help others chart their own path. Here is what I learned so far about three areas – routines, virtual meetings, and face masks.
Change in Daily Routine
Individuals with autism thrive on routine; we not only seek out specific routines in everyday life, we crave it; appreciating the comfort it provides. Hence, you can imagine the overwhelming change the Coronavirus pandemic brought upon most autistics and their families; it is what I call the ultimate routine crusher.
One week I was working at an office, the next week I was told to work from home. While my colleagues looked forward to working from home, I feared it; because it was different, and I clung to my previous routine even though it did not exist. I tried keeping the same hours at home as I did at work, doing similar tasks at similar times; and I failed – miserably. It was not until I viewed my situation as what routine works best in the home environment, was I able to move on. That was a big “aha!” moment for me. Since I prefer visuals, I developed a chart of “tasks” to complete in the day and put them in the order (not time) I needed to complete them. The chart helped me visualize when to complete each task, but with flexibility. This chart morphed my pre-pandemic routine, based on time, into a flexible, yet predictable, schedule. My second teaching moment was incorporating activities I normally did not do during the day; working in the garden, completing my work in the afternoons while having more down time in the mornings, and running at night when the world is quieter. My third teaching moment was maintaining a similar bedtime while allowing flexibility with the time I wake up. After a few weeks of quarantine, I was more tired and grumpy than before; after observation I realized that my bedtime was slowly moving further and further away from my normal bedtime, which wreaked havoc on my sleep schedule, which wreaked havoc on my day schedule. I learned I can be flexible with my wake-up time, but I have to stick close to my 10 pm bedtime. The overarching theme I learned – flexibility with my routine led to a more effective one.
With social distancing in full force, video (e.g., Zoom) meetings became the “new normal.” However, for an autistic the stimuli in video meetings are greatly amplified; making it hard for me to grasp the “big picture.” It is not so much all the attendees’ faces staring at me, but all the stimuli going on behind them that leads to an overwhelming flood of information, activating my anxieties. For example, in a video meeting one of the attendees had a Zoom background of a beach with waves crashing onto a beach. I was focused on the background, waiting for the waves to change or something to cross the sandy beach. In another meeting, an attendee’s child started playing in the background; that was all I could focus on. Hence, attending to the discussion, rather than the extraneous stimuli, is mentally and physically exhausting! To help me concentrate, my strategies include positioning my laptop sideways or looking away from the computer screen and focusing on the voices, turning off the Gallery View to reduce the visual barrage of information, and using fidget toys (the most effective coping strategy I have found) since it allows me to engage in a repetitive behavior that calms my anxieties.
In addition to stimuli overload, interpreting non-verbal behaviors in video meetings requires more focus than face-to-face chat, since I am only seeing the top quarter, if that, of a person. I must make sense of non-verbal cues like facial expressions and tone and pitch of the voice, which are difficult to interpret over video. For example, most people have “upset” looking faces when they are at rest, or when connectivity issues occur the congruence between facial and verbal behaviors breaks down. Ways I cope include taking sensory-breaks mid-session for meetings longer than 50 minutes, switching my view so I just focus on the speaker, and limiting video meetings to those that are absolutely necessary.
A topic that involves both stimuli overload and non-verbal cues is not knowing who is in the virtual meeting room until I enter the meeting, which causes me distress. This may not cause panic in others, but for me the uncertainty of who is in the virtual room causes anxiety. When walking into a traditional meeting room, I can peek in the room before entering. Whereas with video meetings, boom! I just appear and must quickly acquaint myself with who is in the room; and then if a person starts conversing with me right when I enter, I panic. To cope with this, I am one of the first attendees entering the meeting, then I mute my microphone followed by finding an activity to engage in (rather than looking at the computer screen) while waiting for the meeting to start.
Silence is something I usually relish, but with video meetings silence causes me to panic. Interesting, I wonder why? It took me a long time to figure out why; I assumed there was a technical connectivity issue. With in-person conversations, silence is a natural pause, but with video meetings silence means something is wrong, provoking panic. Wouldn’t it be nice to have a silent video meeting?
No wonder when I finish a video meeting I am agitated and exhausted! I found engaging in low sensory, repetitive activities (running, walking, napping, yoga) rather than higher sensory activities (TV, watching a movie or playing a computer game) is more beneficial.
I did not know why I felt so fearful around certain people in the grocery store until I realized they were wearing face masks. With face masks, I am not able to effectively “read” the person’s facial expressions thereby limiting my ability to predict how I should act, which gives me pause when interacting. For example, I relax more in the presence of a person smiling and when a person frowns, I realize I said something wrong. With a face mask, I do not receive that feedback and it makes me anxious. At first, I thought it was the added stimuli of the face mask that made me nervous, not able to recognize the person. It was not until I conversed with a person wearing sunglasses that I learned a very interesting thing – I do not read faces, I read mouths! And I do not think I am the only one. Through repeated interactions with people wearing face masks, I learned I interpret social cues from mainly their mouth area. Did you know, when a person is upset, happy, or mad the eyes stay about the same? It is the eyebrows and mouth that change with their emotions. I had to learn to focus on a different part of the face when interpreting social cues – the eyebrows. A person’s eyebrows provide me more information about a person’s emotions than their eyes. For example, the inner part of the eyebrows dips down when a person is mad or frustrated, they lift slightly up for happy emotions, and eyebrows really lift up when the person is excited or surprised.
Another interesting conundrum with face masks, my ability to multi-task decreases. I believe it has to do with the fact my sensory processing is working overtime evaluating social cues in addition to the emotional toll of entering panic mode. I recently noticed when out shopping alongside people wearing face masks I do not concentrate well and cannot fluidly carry on a conversation. I lose track of what I am saying, it is difficult for me to follow multi-step directions and I find it difficult to recall small things such as a short list of items to purchase at the grocery store. To cope, I write my entire shopping list down and take it with me to the store, I focus on 4-by-4 breathing techniques (inhale for four counts and exhale for four counts) to calm my amygdala, when conversing with a person wearing a mask I maintain short, polite conversations, and with those I know well I encourage them to be expressive with their eyebrows. What does this mean for families with autistic kids? Be gracious. Be patient and allow more time to complete directions, try not to place multiple demands when you are around those wearing face masks, make your shopping trips short, and understand anxiety levels may increase.
In conclusion, autism comes in many different forms, so my experience by no means applies to all individuals, but it may reveal insights that have broad applicability for those experiencing similar experiences. It is important for families to find coping mechanisms that work for them to help successfully transition and chart a new path during this pandemic. I remind myself, even though this unprecedented time brings about unpredictable environments, it also offers the opportunity for change and flexibility.
For more information, Heidi Hillman can be reached at firstname.lastname@example.org.