Make the Day Make Sense

It was a Saturday just like any other Saturday. Becca woke up, got ready to start her day. Had her grilled cheese and bacon, we got dressed and packed her bag. I reminded her that on Saturday mornings we have music class, that we would be getting in a car and going downtown. That she would be seeing her teacher, and her friends and that we would sing and dance and drum. Becca got ready and was all smiles, excited for what would be another fun-filled morning in her music program.

I should pause and explain that Becca LOVES music. She spends about 90% of her day with music on. She sings. She dances. She makes up tunes. She has all sorts of instruments at home - a guitar, a piano, drums of various types - and she plays with all of them. And on Saturday mornings, she very excitedly gets ready to make it to her music class with no issues.

So this Saturday was no different...until it was.

We arrived at the program, we were buzzed in and took the elevator. We got to our floor and picked up Becca's nametag. But instead of being allowed to walk to our studio, we were asked to wait in the cafeteria. Apparently, Becca's teacher had gotten stuck on the train and was running late. The entire class was asked to wait in the cafeteria until she arrived. All of the other classes - straight into the studio. Of course, many of the kiddos didn't understand why. Becca kept trying to go to the back to her classroom. I explained to her that we had to wait because the teacher wasn't there.

Becca started to become antsy. She started flapping her arms. Got up from her seat and started walking around, vocally stimming. The other kiddos in the space started doing the same. It can be very difficult for Autistic folks to wait, especially if they don't understand why they have to wait this time around when they have never had to wait before. It makes them anxious. I pulled out Becca's video and gave it to her to watch. It helped, but just for a few minutes. She wanted to go to her music class.

Finally, the Program Director came out of her office to inform us that we can go to the studio. When we got there, we saw that Becca's teacher still had not arrived. A substitute sat in the teacher's chair, with her guitar, ready to start class. At this point, the class is starting 15 minutes late. The classroom was set up in a completely different configuration; Becca looked around and pushed her head into my chest the way she does when something is not quite right. I reassured her that it would still be fun; but then the unthinkable happened: the teacher started playing her guitar, and it was not the usual hello song that Becca's teacher uses, the song that Becca has been used to hearing and playing every Saturday for the last nine months.

Becca started to scream and ran out of the room. I walked a few laps around the floor with her and tried to come back into the classroom. She refused to go back in. I had to grab our things and take her home. She cried the entire 30 minute ride back home, and finally was able to relax once she was in the safety of her bedroom.

This kind of scenario might seem like a bit of an extreme reaction to what most would consider a relatively minor inconvenience. But actually, this is a common experience for folks on the Autism spectrum - no matter where they are along the spectrum. A different route to school, a switched TV show, the “wrong” cup at breakfast, all of these represent a deviation from the routine. Becca experienced the compounded effect of multiple deviations from what she expected all in a short amount of time - and it led to a major meltdown.

Routine isn’t stubbornness. It’s not a quirk or a phase. For many people on the spectrum, routine serves a real neurological and psychological function. Understanding that can change how we respond to it. For many Autistic individuals, that need for routine shows up in very specific ways: the exact placement of toys, the order of a bedtime story, the precise words a parent uses when saying goodnight. Deviations from these patterns, even tiny ones that would go unnoticed by most people, can cause significant distress. The world is harder to navigate for many people with Autism. Emotional dysregulation, challenges with social communication, and difficulty predicting what others will do or say create a constant undercurrent of uncertainty. Routine cuts through that noise. It creates a reliable framework, a script for what comes next. When that script holds, anxiety stays manageable. When the script breaks, the anxiety doesn’t just increase a little. For many Autistic individuals, it spikes dramatically. That’s not defiance. That’s a nervous system that’s lost its anchor. Signs of distress due to changes in routine include:

• Anger

• Any form of self stimulatory behavior

• Being uncooperative

• Confusion

• Lack of focus

• Lack of motivation

• Tantrums

• Yelling

Having and following a routine creates:

• Confidence: Routines provide a sense of control for those with Autism. That control turns into confidence as they complete each day.

• Safety: Many Autistic individuals struggle with uncertainty, and routines offer a sense of safety.

• Focus: Following a routine makes focusing on tasks or activities easier, thanks to a smaller cognitive load. 

• Better relationships: A smaller cognitive load also allows more effort to be spent on connecting with loved ones.

• Cooperation: Because routines create a safe and comfortable environment, Autistic individuals are more likely to cooperate with others. 

What Counts as a Change in Routine to Autistic Individuals?

Understanding what changes mean to Autistic loved ones can be difficult. What one person considers a small change can be a major disruption to an Autistic child or adult. 

So, what counts as a disruptive change to a schedule for Autistic children and adults?

• Cancelled events

• Changes in task processes

• Environmental changes

• Familiar people not being around

• Furniture changes

• How clothing feels

• How clothing is washed

• How food is cooked

• Leaving the house

• Lighting changes

• New food

• New people

• New places

• New tasks 

• Not finishing a task or activity

• Running behind schedule

• Times meals are served

• Using a different brand of a product (example: toilet paper)

Strategies for Handling Routine Disruptions

Not all disruptions are equal, and not all Autistic people respond the same way. Someone who requires fewer daily supports might feel uncomfortable with a change but have the self-regulation skills to manage it quietly. Someone with more significant support needs might have a full meltdown over the same situation. Both responses are valid, and both call for thoughtful support.

So here are a few tips to make the day make sense:

• Give advance notice. Unexpected changes are the most disruptive. If you know a change is coming (a new school schedule, a holiday, a different caregiver), introduce it early. Talk about it, draw it out if that helps, or use visual schedules to preview what the new routine will look like.

• Use visual supports. For many Autistic people, visual information is easier to process than verbal explanations in the moment. A picture schedule, a simple calendar, or even a written list of “what’s different today” can reduce the confusion that amplifies distress.

• Acknowledge the difficulty. Don’t dismiss the frustration. Saying “I know this feels hard” before moving through the change validates the experience and helps the person feel understood rather than pressured.

• Practice flexibility in small doses. Try to build deliberate, low-stakes variations into routines, like a slightly different sequence or a small substitution, to gradually build tolerance for change without triggering a crisis. Over time, this can meaningfully expand a person’s comfort zone.

Helping our Autistic loved ones navigate changes in routine is about building bridges that make transitions feel safer, more predictable, and more manageable over time. Progress may not always look linear, and some days will feel harder than others, but consistency, patience, and understanding go a long way in helping our loved ones feel secure in an ever-changing world. For caregivers and parents, it’s important to remember that we are not aiming for perfection—we are building trust. Every effort we make to prepare, explain, and support our loved ones through change is meaningful, even when the response isn’t immediate. Over time, these steady, thoughtful approaches help our loved ones develop resilience and confidence in their ability to handle life’s transitions.

Saturday's experience and others like it are always challenging, but they have also been helpful and - even more importantly, have reminded me that I am continuously learning alongside my Becca, one moment at a time.