Approximately 40-50% of autistic people experience high levels of anxiety (Gaigg, Crawford, & Cottell, 2018).​ Some autistic people experience sensory differences and being in a stressful sensory environment can make some people feel anxious. ​For some autistic people, a change in routine or uncertainty about the future can also be a source of anxiety. ​Another significant cause of anxiety is a sense of being misunderstood and/or not accepted by non-autistic people. Some people might try extra hard to act like other people, so they ‘fit in’ and are not seen as ‘different’. ​While worrying about not fitting in can be a very normal experience, this can be especially difficult for autistic people.

Commonly experienced anxiety

Anxiety is normal for all of us, and short experiences of anxiety are part of daily life. However, it becomes challenging when anxiety begins to be a regular feature in daily life. Anxiety is a problem when feelings of worry and panic become persistent, overwhelming and beyond a person’s control (Oxford Health NHS Foundation Trust, 2023).​

Anxiety can happen for a range of reasons and people can vary in their ability to cope with it. Anxiety is a word often used to describe when we feel ‘uptight’, ‘irritable’, ‘nervous’, ‘tense’, or ‘wound up’.

Physical sensations, thoughts and behaviours

When we are anxious, we may experience a variety of uncomfortable physical sensations.​

These may include:

• A racing heart rate​
• Feeling short of breath​
• Feeling agitated and distressed​
• Feeling shaky​
• Sweating and feeling sick​
• Tense muscles

Thoughts related to anxiety may be worry thoughts or feeling out of control.

Behaviours related to anxiety may be reassurance seeking, routines or avoidance (Oxford Health NHS Foundation Trust, 2023).

The anxiety cycle

The cognitive-behavioural therapy (CBT) model is a psychological approach for understanding anxiety (and what keeps it going). It is based on the concept that thoughts, feelings, physical sensations, and actions are interconnected (Oxford Health NHS Foundation Trust, 2023):

Interoception

Interoception allows us to understand our body’s signals and make sense of them. For example, when we feel tired, our body will send a signal to our brains to tell us that we are tired, and we regulate this by resting or going to sleep. ​

We know that in autistic people this process can often feel muted, meaning we don’t always notice our body’s signals. You may also experience the opposite, where you feel very sensitive to certain situations. ​This can sometimes lead to you not always understanding what your body’s signals are telling you. This can be another source of anxiety.

Thoughts that keep anxiety going:

When we have anxiety, we can have ‘worry thoughts’ for large periods of time.​ This can make our worry feel out of control and prevent us from thinking clearly.​ The physical symptoms resulting from anxiety can be frightening when we do not understand what is happening (fight, flight and freeze response). ​This can make the anxiety feel worse, so we find ways to cope with the situation.​ This highlights that how we think about a situation will determine how we react to it (Oxford Health NHS Foundation Trust, 2023).

Behaviours that keep anxiety going:

Sometimes, the way we cope with anxiety can help in the short term, but in the long term it can keep our anxiety going. Sometimes these behaviours may get in the way of doing things that you want to do.

For example, if someone feels anxious on the bus, they might cope with this by avoiding getting the bus. It will relieve their anxiety in the short term, but in the long term this will keep their anxiety going. They might need to get the bus to an activity they really enjoy. Avoiding the bus can increase the anxiety because it maintains a belief that you would be unable to cope in the situation, and it can fuel unhelpful thoughts.

It’s important to know that there are some things that we know we want to push ourselves to do, whilst taking care of our autistic needs.

(Oxford Health NHS Foundation Trust, 2023).

A few helpful strategies:

(Robinson and Smith, 2023)

-Seek accommodations

-Account for uncertainty​

-Use strategies to increase certainty

We know it can sometimes be really difficult to tell people about anxiety. Try and find an adult you trust and remember that they are there to help you and not judge.