Anxiety

Anxiety in autism spectrum disorder (ASD)

Anxiety or fears are common in children and commoner in children with autism (affecting about 40%). Anxiety shows itself somewhat differently in children than in adults:

  • Behaviour difficulties can be born out of anxiety: anger, agitation, irritation, poor sleep or eating, reduced engagement with others, increased fixations, and withdrawal from others.
  • Episodes of anxiety are longer lasting and more intense in children with autism.
  • Most anxieties are about changes in routines or situations or meeting new people.
  • Some sensory aspects of the situation, such as noise or light, can also provoke anxiety.

Types of anxiety problems:

Social anxiety is the commonest issue in autism (29%); general anxiety about minor things, such as shifting from one activity to another, is also common (13%). In addition, some children have panic disorder (10%), and others have some specific fears, for example, agoraphobia – when the person feels trapped and fearful in a situation as in open spaces, shopping malls, train carriages, and wants to escape.

Anxiety in autism may get worse with age. Adolescents with high functioning or milder forms of ASD may first come to notice because of their fears and anxiety.

What causes anxiety in autism – Five factors that contribute to anxiety in autism:

1. Cognitive rigidity

  • Lack of flexibility makes it hard to deal with new situations and intolerant of any unpredictable situation.
  • It prevents the development of flexible strategies for dealing with stress.
  • Anxiety increases rigidity, which in turn makes the person more anxious.

2. Sensory processing difficulties

Sensory processing helps us pick out the most relevant information and make sense of the whole situation when only partial information is available, such as guessing the object when we can only see a part of it or filling in the words in a sentence that may have been missed. This failure of prediction becomes a source of ongoing anxiety with the need to see everything clearly and in detail to understand it.

3. Difficulty in feeling, recognising, and expressing emotions (alexithymia)

We all have feelings, mainly after seeing or hearing something or having some thought or memory cross our minds. We become aware of our feelings and emotions – being worried, angry, happy, rushed, or just bored. We then manage our feelings – by thinking this will pass, it is not a big deal, or we can sort it out later – or we act on our feelings – talk to someone or do something. This is how we maintain our mental balance. In autism, the feelings are often confused and chaotic, making it hard for people with autism to express or manage or act on their feelings. This creates a few problems for the person:  a. they may become anxious or fearful of not knowing what is going on, b. it becomes hard for them to take the right action, c. their actions or behaviour are not helpful for them and may cause further problems, or d. they may suppress or bottle up their feelings leading to a build-up which explodes when it becomes too much.

4. Intolerance of uncertainty:

Uncertainty is not knowing:

  • What is going to happen next?
  • What will happen because of what I have done?
  • When will this end?
  • Should I do it or not?

While uncertainty is hard for everyone, it is particularly upsetting and distressing for some people. To avoid being upset, they might try to avoid the situation or work too hard to prepare for it, like gathering too much information or endlessly seeking assurance, repeatedly asking questions or ruminating, reading up or preparing for something that is relatively rather a minor issue. it may also make them highly anxious particularly if they have difficulty in managing their emotions and feelings. It may affect their thinking, making them more hostile, and they also cause physical symptoms such as excessive sweating, feeling hot or shaky or increased heart rate.

5. Not knowing how to relax and be calm

We all become stressed and anxious – that is life. However, to carry on, we need some downtime – some time to relax and wind down. We have our preferred way of doing it that we have learnt over some time, and it works for us; some people are better at relaxing and recharging, and they seem to be better able to cope with the stresses and demands of life. It is hard for people with autism to know when to relax and how to relax. But, they can learn it if they are given a structure to recognise their stress and are helped to practice some relaxing methods that suit them and are appropriate for the situation.

 

Triggers for  anxiety

Some situations act as triggers or starting points for generating anxiety:

  • Change of routine
  • Confusion and worries about social and communication situations
  • Prevented from doing preferred repetitive behaviour
  • Sensory oversensitivity and overstimulation
  • Specific phobias/fears
  • Too many demands/expectations

Assessing anxiety

  • Functional assessment:
    • Frequency, duration, intensity.
    • Antecedents and consequences: for recognising triggers and maintaining factors (attention, escape, physical, tangible or social)
  • Measure:
    • The Anxiety Scale for Children- ASD (ASC-ASD©) is a 24 item self-report anxiety questionnaire, with four sub-scales: Separation Anxiety(SA), Uncertainty (U), Performance Anxiety (PA) and Anxious Arousal(AA), for use with young people aged between 8-16 years with a diagnosis of autism spectrum disorder (ASD). There are no norms yet but recommended clinical cut-off is 24. It is free to download and is available in multiple languages. https://research.ncl.ac.uk/neurodisability/leafletsandmeasures/anxietyscaleforchildren-asd/

 

  • But not everything is anxiety!
  • Sometimes demand avoidance is just demand avoidance
  • Sometimes challenging behaviour is rage/dysregulation

Six ways of helping an anxious child

  1. Preventing anxiety 

  • Diet, sleep, and exercise
    • Reduce stimulating food from the diet.
    • Lack of sleep worsens emotional regulation and anxiety. Make a calm sleeping routine to follow. Look at ‘Helping children sleep better’ to find out more.
    • Regular physical exercise, 20-30 minutes at a time, 2 or 3 times a day, will help the child remain calm.
  • Model non-anxious behaviour. Increase a sense of calm. Reduce clutter.
  • ALL CHILDREN NEED DOWNTIME! Give opportunities for time out – and make sure that the child is confident to use them (for example, time out card)
  • Try to use routines and consider using the following methods:
    • visually communicate – visual timetables,
    • Now and Next cards (for example, a picture of the current activity and a picture of the next activity)
    • ‘bridging’ activities to fill the gap between the changes
    • advance warning (whether it needs to be given well in advance of any change or a new activity or immediately before (long or short) depends on the child) and the situation.

For example, there can be two types of warning about a fire alarm:

and:

  • Push for new things, but slowly and gently
  • ‘Read’ the child’s behaviour – be aware of the impact of adult behaviour on the child (for example, perception of being shouted at/told off, criticised, feeling pressured, getting into battles). Then, have regular one-to-one time with the child.
  • Praise – public vs private – be aware that being the focus of attention is uncomfortable for some children.
  • Be alert for teasing and bullying.
  • Provide help in understanding instructions and communicating expression of the need for support – use signs or images if required.
  • And have a plan for unmanageable anxiety!

2. Getting better at recognising and managing emotions

  • Learning to identify, rate and express emotions
    • Use your words
    • Please, write it down
    • Who to share with? when? Why is this important? (emotional
    • support, help with problem-solving
  • Identifying triggers for emotions
  • Understanding how emotions affect our bodies

 

 

The colourful ‘Zones of regulation’ can also help a child label the intensity of how distressed, anxious, or upset they are.

Once they have used rating and labelling, they can communicate their emotions to others and learn how to manage them. Recognising and labelling is the first step in managing emotions.

Look at ‘Helping children’s emotional regulation’ to find out more.

3. Giving the right sensory experiences

Many children with autism, who are hypersensitive – are distressed by light, noise or other sensations – benefit from reducing sensory input by using simple methods such as dark glasses or headphones. In contrast, others who have decreased sensitivities and seek sensations can benefit from giving them opportunities to do fun activities that involve visual, touch, sound or movement sensations.

Look at ‘Helping Children with Sensory Processing Difficulties’ to make the right programme for the child.

4. Supported gradual exposure to a feared situation

A step-by-step plan to gradually expose the child to a feared situation can help overcome a specific fear. The successful completion of each step is praised, and the next step is built on the previous one. For example, a plan to reduce the fear of dogs may look like this:

5. Getting better at dealing with uncertain situations

A vicious cycle of negative thoughts (“something wrong with me”, “It is going to get worse”) creates a sense of fear, and physical feelings (feeling shaky and sweaty). Breaking this vicious cycle is helped by using a mindful approach as the one described below:

  • Say STOP in your mind, or even out loud if that helps
  • Take five deep breaths: in through the nose and out from your mouth. Focus on your breath – feel the breath as it goes in and out.
  • Pull back: tell yourself: “This is just anxiety; I don’t have to act on it just now; it will pass”.
  • Ask for help, talk to patents, teacher, or a trusted friend,
  • Shift your focus: use the practised activity such as reading, listening to music, using a sensory ball.

6. Getting better at dealing with a new demand or situation by preparing and by practising in a supportive environment

  • Use of visual aids and social stories to explain new situations and to support understanding of emotions.

7. Learning to relax and be calm

  • Physical exercise
  • Belly Breathing
  • Counting
  • Thinking of pleasant situations (i.e. their favourite train)
  • Gentle physical touch (hugs, squashing ball)
  • Repetitive behaviours

Practice some simple activities such as lying down to the count of 10 of breathing deeply ten times, squeezing a squeezy ball, listening to music, looking at their favourite picture book or using a sensory activity. Please don’t wait for the child to get stressed to practice these activities but rather make them part of some of the routines you do with your child every day.   Give the activity a one or two-word name, such as air time, sleeping lion or squeezy ball, and make a symbol for the activity. First, show the child that symbol, then say its name and then do the relaxing activity—model, prompt and reward. Once the child has practised a particular relaxing activity quite a few times, you’ll show the child the symbol or say its name whenever the child is stressed or upset. And then the child may be able to relax when they need to relax. Practice a few of these activities regularly, and then you will be able to choose the right one at the right time. If you haven’t practised it before, you can’t use it when you need to.

 

School

Work with the school to apply the above tips. Maintain good communication. Watch out for any bullying of the child at the school.

Professional help

  • Psychologist: for assessing the child and using adapted CBT
  • Child psychiatrist: some children may need medication. All medication has side effects. It should only be used when all the above have been tried and with extreme caution.

 

Sources/references

An Evidence-Based Guide to Anxiety in Autism. Gaigg SB, Crawford J, Cottell H (2018). https://www.city.ac.uk/news/2019/april/new-guide-help-manage-anxiety-autism

Children and young people with anxiety: a guide for parents and carers. www.anxietyuk.org.uk

Dr Ann Ozsivadjian, Principal Clinical Psychologist, Independent Practice and Evelina London, Children’s Hospital. Talk on a course.