How do we know when someone is experiencing anxiety if they cannot tell us, “I’m worried,” “I’m scared,” or “Something is making me feel bad”?

This question is especially important for some autistic people who use few words or do not use spoken language to communicate.

In these cases, anxiety may appear in ways that we do not always recognize immediately: changes in behavior, increased agitation, avoiding certain situations, difficulty sleeping, a greater need to repeat certain actions, or stronger reactions to situations that previously seemed easier to tolerate.

The problem is that these signs can easily be mistaken for “problem behaviors” or simply attributed to autism or intellectual disability.

A new study published on October 22, 2026, in the Journal of Autism and Developmental Disorders encourages us to look beyond behavior and pay attention to other factors that may be related to anxiety.

What did the study examine?

The study included information provided by 165 parents and caregivers of children and adults with moderate to profound intellectual disability.

Participants ranged in age from 4 to 63 years, with an average age of approximately 21. The group included autistic people as well as people with different genetic conditions and other causes of intellectual disability. Many of the participants used few words or did not use spoken language.

The researchers examined several factors that might be related to anxiety, including:

• sensory processing differences;

• intolerance of uncertainty;

• physical health problems;

• repetitive behaviors;

• age and gender;

• adaptive skills;

• autistic traits.

The results were especially interesting because three factors were consistently associated with higher levels of anxiety:

differences in auditory processing, difficulty tolerating uncertainty, and physical health problems.

Noise can be much more than an annoyance

Many autistic people experience sound differently.

A place full of conversations, a vacuum cleaner, an alarm, a hand dryer, loud music, or unexpected sounds may be mildly annoying for some people, but overwhelming for others.

The study found that differences related to auditory processing were associated with higher levels of anxiety.

This can help us better understand certain everyday situations.

Imagine a person who becomes very anxious every time they enter a shopping mall.

From the outside, we might think they simply do not want to go in, that they are “misbehaving,” or that they just need to get used to it.

But perhaps the problem is not the shopping mall itself.

It may be the combination of voices, music, shopping carts, announcements, automatic doors, and other sounds happening all at once.

If we do not ask—or try to understand—what is happening in the environment, we may end up trying to change the behavior without understanding what is causing it.

Not knowing what will happen can also create anxiety

Another factor strongly associated with anxiety was intolerance of uncertainty.

This refers to difficulty managing situations in which a person does not know what is going to happen, when it will happen, or what is expected of them.

For some autistic people, uncertainty can be especially difficult.

A change in schedule.

A medical appointment without knowing what procedure will take place.

An activity that starts later than expected.

A different person coming to pick them up.

A route that changes.

Not knowing how long they will have to wait.

For those of us who can ask, “What is going to happen?”, “How much longer?”, or “Why are we changing plans?”, those questions can help reduce uncertainty.

But a person with significant communication difficulties may not have an easy way to obtain that information.

Their anxiety may then appear through their behavior.

That is why helping a person anticipate what will happen can be an important form of support.

Visual schedules, photographs, calendars, social stories, timers, objects of reference, or simple instructions may help some people. There is no single strategy that works for everyone. What matters is finding a form of communication that is understandable to each individual.

Before assuming it is anxiety, we should also ask: could there be pain?

Perhaps one of the most important findings in the study is the relationship between physical health difficulties and anxiety.

When a person can explain what they are feeling, they may say:

“My stomach hurts.”

“My tooth hurts.”

“I have a burning sensation.”

“I feel dizzy.”

But what happens when that person cannot communicate this easily?

Pain or discomfort may appear as a change in behavior.

They may become more restless.

They may refuse an activity they usually enjoy.

They may sleep worse.

They may eat less.

They may hit or touch a particular part of their body.

They may want to remain in a certain position.

They may appear more irritable or anxious.

And there is an important risk: assuming that the change is “because of autism.”

The researchers themselves point out that there can be considerable overlap between behavioral signs of anxiety, pain, and other emotional difficulties, making it especially challenging to identify what is happening in people with significant intellectual disability.

That is why, when there is a significant or sudden change in behavior, we also need to consider physical health.

Not everything is anxiety.

Not everything is sensory.

And, most importantly, not everything is “part of autism.”

Behavior can also be communication

This is an idea that I consider especially important.

When a person cannot clearly tell us what they are feeling, we need to learn to observe in a different way.

Instead of asking only:

“How do we get them to stop doing this?”

we can begin by asking:

“What might they be trying to communicate?”

Is there too much noise?

Has something changed in their routine?

Are they waiting for something without knowing when it will happen?

Could they be in pain?

Are they tired?

Are they hungry?

Are they overwhelmed?

Do they understand what we are asking them to do?

Do they have an effective way to say “no,” “I need help,” “I want to leave,” or “It hurts”?

This does not mean that every behavior has a simple explanation or that we will always understand it immediately.

But beginning by looking for the cause can take us much further than simply trying to control what we see.

Repetitive behaviors are not necessarily the problem

The study found another interesting result.

When the researchers took other factors into account, repetitive behaviors did not consistently emerge as predictors of anxiety.

The researchers note that some previous studies suggest that certain repetitive behaviors may appear in response to anxiety and, in some cases, may help the person regulate themselves.

This is important because repetitive movements, rocking, handling an object, or repeating an action should not automatically be seen as something that needs to be stopped.

Before trying to eliminate a self-regulating behavior, we should ask what function it may be serving for that person.

The challenge of recognizing anxiety when spoken communication is limited

One of the major issues highlighted by this research is that many tools used to identify anxiety were designed for people who can verbally explain their thoughts and emotions.

This leaves people with moderate or profound intellectual disability, and those who speak little or do not speak, in an especially vulnerable position.

How do we assess ongoing worry if the person cannot describe it?

How do we know if they are afraid?

How do we distinguish between anxiety, pain, sensory overload, and frustration?

It is not always easy.

The researchers used two different assessment tools precisely because there are still important limitations in how anxiety is measured in this population. Since then, a scale has also been developed specifically for people with intellectual disability and different levels of communication.

This reminds us of something fundamental: the absence of words does not mean the absence of emotions.

What can families, therapists, and caregivers do?

This study does not provide a formula for identifying anxiety, and it also does not prove that noise, uncertainty, or physical health problems directly cause anxiety in a particular person.

It is a cross-sectional study, which means it identifies relationships between factors rather than cause-and-effect relationships. The authors themselves note that longitudinal research is needed to better understand how anxiety develops in this population.

However, the study does offer us a useful way to observe.

When a person who has difficulty communicating what they feel begins to show changes, we can look at several areas:

The environment: Is there noise, too many people, bright lights, or other stimuli that may be difficult?

Uncertainty: Does the person know what is going to happen? Do they understand the routine? Was there an unexpected change?

Health: Could there be pain, constipation, dental problems, reflux, an infection, or another physical issue?

Communication: Do they have an accessible way to express pain, fear, refusal, the need for a break, or the desire to leave?

Patterns: Does it always happen in the same place, at the same time, or before a particular activity?

Keeping track of these patterns can provide very valuable information for families and professionals.

We need to listen even when a person does not speak

For me, this is the most important message from this research.

Sometimes we think that listening means waiting for someone to explain in words what is happening.

But listening also means observing.

Knowing the person.

Noticing changes.

Respecting their ways of communicating.

Asking what may be happening before judging what we see.

An autistic person who cannot say “I’m anxious” can still experience anxiety.

A person who cannot say “that noise is hurting me” can still experience that noise intensely.

And a person who cannot say “I’m in pain” can still feel pain.

Our responsibility as parents, family members, therapists, educators, and professionals is to try to understand these signals and to provide forms of communication that allow the person to have more and more control over their own life.

At Positive Autism, we believe that behavior should not be seen only as something that needs to be changed. Many times, it may be the first sign that we need to look more closely, listen in a different way, and ask what that person may need.

Scientific source

Edwards, G., Tarver, J., Mingins, J. E., Oliver, C., Horton, I. & Waite, J. (2026). Correlates of Anxiety in Children and Adults With Moderate to Profound Intellectual Disability. Journal of Autism and Developmental Disorders. Published October 22, 2026.

DOI: 10.1007/s10803-026-07539-2

Note: The study included people with moderate to profound intellectual disability from different diagnostic groups, including autistic people. Therefore, its findings should not be generalized to all autistic people.

Sources:

https://link.springer.com/article/10.1007/s10803-026-07539-2?utm_source=chatgpt.com