Autistic Anxiety Often Begins Long Before We Leave the House

Last week I travelled to Dublin to deliver a presentation in a school near St Stephen's Green. The presentation itself didn't make me anxious. Speaking to educators about autism, belonging and neuroaffirmative practice is something I genuinely enjoy.

The challenge was getting there.

Before I left Cork, I spent the days before considering my options. Should I drive the entire journey? Take the train? Use the Luas? Combine different forms of transport? Eventually I decided to drive to the Red Cow Park & Ride and take the Luas into the city centre.To many people, that sounds like a straightforward decision. For me, it wasn't.

Finding an unfamiliar car park, navigating a ticketing system I had never used before, identifying the correct platform, monitoring stops, changing lines and navigating unfamiliar surroundings were all manageable in isolation. It was the accumulation of uncertainty across the journey that drove my anxiety.

As an Autistic woman, I recognised this feeling immediately. As an autism consultant, I also recognised something else. This is exactly what many Autistic people have been trying to explain for years. Anxiety Looks Different Through an Autistic Lens

When most people think about anxiety, they often imagine excessive worrying, negative thoughts or fear about future events. While these can absolutely be part of the picture, Autistic anxiety is often much more complex than that.

Many Autistic people describe anxiety as a physical experience. A state of heightened alertness. A nervous system preparing for uncertainty. A body scanning for information and attempting to create safety in environments that feel unpredictable.

Parents frequently tell me:

"He worries about everything."

"She asks the same question over and over again."

"They need to know every detail in advance."

"He melts down when plans change."

These behaviours are often viewed as anxiety symptoms.

What is frequently missed is the role uncertainty plays underneath them.

The child may not be seeking reassurance because they are irrationally worried.

They may be seeking information because information reduces uncertainty.

And uncertainty can feel profoundly uncomfortable for an Autistic nervous system.

In recent years, research has increasingly validated what Autistic people have been sharing through lived experience for decades. One of the most significant findings is the role of intolerance of uncertainty.

Intolerance of uncertainty refers to the tendency to experience distress when situations, outcomes or expectations are unclear. While most people experience some discomfort when faced with uncertainty, research suggests that Autistic individuals often experience this far more intensely.

South and Rodgers (2017) proposed that intolerance of uncertainty may be one of the central mechanisms underpinning anxiety in autism. Rather than anxiety existing independently, uncertainty itself may be the driving force behind many anxiety experiences. More recent research continues to support this theory.

Fujii and colleagues (2026) found that intolerance of uncertainty remains a key factor in understanding anxiety among Autistic individuals. Similarly, a recent systematic review by Da Silva and colleagues (2025) identified uncertainty, sensory experiences and the demands of navigating neurotypical environments as recurring themes in Autistic adults' experiences of anxiety. In simple terms, many Autistic people are not anxious because they are imagining problems.They are anxious because they are trying to navigate a world that often contains too many unknowns.

This understanding aligns closely with what I see every day in my practice.

Many Autistic children, teenagers and adults are not simply managing thoughts. They are managing nervous systems.

Consider what a typical school day might involve:

• Constant transitions

• Sensory demands

• Social navigation

• Changing expectations

• Unexpected events

• Noise

• Crowds

• Unclear communication

• Hidden rules

For many Autistic students, the nervous system spends much of the day predicting, processing and adapting. This is exhausting. It also helps explain why anxiety can appear to "come out of nowhere". The anxiety we see may simply be the visible part of a much larger accumulation of uncertainty and nervous system load.

One of the most interesting parts of my Dublin journey was what actually helped. My friend Adam, whom I met through The Assembly Ireland, knew I was feeling anxious about the route. He sent me short videos showing exactly where I needed to change lines, what the stations looked like and where I needed to get off. Those videos were transformative. The route didn't change. The journey didn't change. The challenge didn't disappear. What changed was the uncertainty. My nervous system now had information. And information created safety.

This is an important lesson for parents, educators and professionals. When an Autistic person is anxious, our instinct is often to reassure them.

"Don't worry."

"You'll be fine."

"There's nothing to be anxious about."

While these responses are well intentioned, they often fail to address the real issue. Sometimes what an Autistic person needs most is not reassurance. Sometimes we need information.

We need to know:

• What will happen?

• What will it look like?

• Who will be there?

• How long will it last?

• What happens if something changes?

• What are my options if I feel overwhelmed?

Information helps the nervous system build a map. And maps reduce uncertainty.

So what Can Parents and Professionals Do? If we want to support Autistic anxiety more effectively, we must move beyond the idea that anxiety is simply a thinking problem. Instead, we need to understand it as a nervous system experience.

Practical supports might include:

• Visual schedules

• Social narratives

• Photographs of new environments

• Videos showing unfamiliar locations

• Clear expectations

• Predictable routines

• Advance notice of changes

• Opportunities to ask questions

• Collaborative problem-solving

These supports may seem small. Yet for many Autistic people, they can have a profound impact. Not because they remove challenge. But because they reduce uncertainty.

One of the greatest privileges of being both Autistic and an autism consultant is standing at the intersection of lived experience and professional knowledge. Increasingly, research is validating what Autistic people have been saying for years. Autistic anxiety is not simply excessive worrying. It is often a whole-body response to uncertainty, unpredictability and environments that require constant adaptation. When we understand this, our support changes. We move from asking, "How can we help this person worry less?" To asking, "How can we help this person feel safer?" And that shift can make all the difference.