Written by David Weesner – The Wee Family
Background
I had no clue how to raise a kid, let alone a kid on the autism spectrum. As parents, we learn through experience. Our daughter Braylee was diagnosed with autism level 3 before her second birthday. At her diagnosis, I was drowning in information and brochures. Everything felt so… business-like. It was as if I had been hired for a job and handed a mountain of information to sort through. “Ask questions,” they said. But what questions? I didn’t even know what I was doing!
Autism and Routines
One thing that wasn’t in that initial info dump about autism was… a lot! Because it was all about recommended therapies and the doom-and-gloom predictions for the future. (I hope some of this has changed since Braylee’s diagnosis about 10 years ago.) One area I want to focus on today is routines.
Routine is something we all tend to fall into at some point in our lives. Work routines are a big one, and we also develop morning and evening routines. They reduce anxiety by giving our brains a sense of what to expect in a world full of change.
What I eventually learned is that creating routines can be very helpful for kids (and adults) on the spectrum. They reduce anxiety and help keep the senses regulated. Knowing what to expect in day-to-day life removes one potential source of stress.
But there’s a problem… Life isn’t that simple. Routine, for some, can have the complete opposite effect. Let me explain why.
Picture Schedules
When Braylee was 6, we had already been working with her in therapy. At that point, she lacked communication entirely. The only way we understood some of her wants and needs was because we’d been with her for six years and learned to pick up on things as parents.
With at-home therapy, we had a breakthrough. Picture schedules started working! It was the beginning of visual communication with our daughter. She began to connect pictures with real-life objects, and it was huge.
Eventually, we got to the point where we could lay out a schedule for her, and she would understand and follow it. Because we knew routine was important for avoiding meltdowns and overstimulation, we started using picture schedules to create routines in her day-to-day life. It felt like a breakthrough… or so we thought.
When Routines Turn Bad
There was a specific moment that changed everything. I had set up a schedule in her picture binder but changed it up a bit because our day was going to be different. This completely threw her off.
When I say it threw her off, I mean a complete and immediate meltdown – screaming, hitting herself, throwing her body on the ground… Meltdowns like this typically lasted about an hour. That’s when I realized strict routines were bad for her.
It got to the point where we had to hide all of her picture schedules. Even the sight of them could result in high anxiety and dysregulation.
I remember thinking, “Why is this happening? I thought routines were supposed to do the opposite!” We started seeing regression, and all the progress she had made over the years was slipping away.
At the height of these daily meltdowns, she began creating her own routines. They became more and more complex, involving specific movements and positions. If she forgot a step, or even if a cat walked in front of her, she would get frustrated, and we could see the anxiety immediately build. These micro-routines happened frequently, and she would get so stuck in them.
Disrupting Everything
We had to make a change. The daily meltdowns and continued regression were exhausting for everyone involved. We started breaking her routines and preventing new ones from being created. This was one of the hardest few months I can remember.
We had to ensure we were doing things differently often, even as parents, to avoid creating new routines. We switched up bedtime and morning tasks to avoid doing the same things for multiple days in a row. Anything to prevent routines from forming.
Avoiding Strict Routines
After months of avoiding routines, we got into a rhythm of ensuring no strict routines were being created, and we started seeing positive changes. Braylee began to open up her world. Her anxieties became less frequent.
We were able to go to new places and experience new things without sensory overload. It seemed like the lack of routine was much better for her, which was completely opposite of what we had learned about autism.
Routines have their place, but avoiding strict routines is so important. Life is unpredictable. Changes happen all the time. Weather changes and seasonal shifts are beyond our control. When we allowed strict routines, even something as simple as a change in weather would result in terrible days.
While I agree that routines are very important for autistic kids, I started to wonder if they sometimes hinder quality of life. Staying in the same safe “routine box” throughout life seems… limiting. Without rigid routines, we’ve been able to show our daughter the world without meltdowns and anxiety. Literally the world.
OCD is a Factor
Over the years, we learned that Braylee also has OCD. This explained a lot and made the early years make more sense. It provided reasons behind why strict routines were so hard for her to break.
Conclusion
This is our experience, and life is different for everyone. I wanted to share this story because maybe it will give someone insight. Maybe it will help someone.
As autism parents, we were always taught that routines and picture schedules are crucial for success. In our experience, it was the opposite. Autism is a spectrum, and the comorbidities that often accompany it mean there is no one-size-fits-all approach. That’s why sharing stories like this is so important. Information like this can be life-changing for someone.
As always, if you are looking for more information or have any questions, feel free to send us a message!
The Wee Family 