Anxiety is one of the most common issues experienced by children or young people with autism. Understanding anxiety and identifying the role it plays in behaviors associated with autism — as well as learning ways to minimize its impact — are crucial for parents and caregivers.
Anxiety is a very common feeling for everyone. We all feel anxious if we are threatened or in danger, but perceptions of what is a threat vary widely. Some people have more anxiety about day-to-day activities than others and some have specific triggers for anxiety, like insects, heights or public speaking.
There are also normal developmental stages that include some anxiety, such as stranger wariness during infancy and separation anxiety experienced by toddlers and preschool children.
Anxiety can be a problem if it occurs intermittently but triggers a response that interferes with everyday life or puts the anxious individual or others at risk. It can also be a problem if it becomes ever-present. The latter would usually indicate an anxiety disorder.
Children and young people with autism often suffer from anxiety, but the things that trigger anxiety and the behaviors it causes vary for different children. Their responses can also be atypical, more prolonged and stronger than for other children.
Other frequent concerns for parents of children with autism, namely sleep disturbance and food fussiness and other food related behaviors, can be associated with anxiety. Anxiety may drive some, if not all, of the behavior, or it may be a by-product of expectations around sleep and eating. Behaviors characteristic of autism can also be hard to differentiate from behaviors seen in anxiety disorders, such as obsessive-compulsive disorder.
The main way you can help your child is to think about whether a behavior you observe could be underpinned by anxiety. This can be very tricky if your child does not communicate. Certainly some things that create anxiety are easier to recognize than others, and some are considered more typical. It is also worth noting that the triggers for anxiety can change over time, as can the behavioral responses.
Characteristics of autism can trigger anxiety for children and young people in many situations. For example, small changes in routine can cause anxiety for children and young people who like things to stay the same, whereas this is a less common anxiety trigger for children who do not have autism. For children who find social interaction difficult, the potential for things to go wrong socially or an inbuilt wariness of others can trigger anxiety in situations that many other children and young people would enjoy.
Sensory sensitivities such as loud noises or light touch can also create anxiety, if distressing sensations cannot be avoided. Bullying can trigger anxiety for school-aged children. Unfortunately, bullying is often experienced by children with autism.
There are different types of anxiety disorders. Some create a feeling of panic or lead to panic attacks. This can seem like a medical emergency because of features such as finding it hard to breathe, a racing heart, trembling or shaking, and sweatiness. The person having the panic attack may feel as though they are going to die.
Obsessive-compulsive disorder is a particular type of anxiety disorder in which a person has thoughts that make them act in a certain way, which then reduces their anxiety. If the person is either unable or prevented from acting in the way they want, their anxiety will increase. In a young person who is unable to describe the thoughts that are driving their behavior, as is the case in even quite verbal people with autism, it is very hard to differentiate obsessive-compulsive disorder from repetitive behaviors that may be part of autism.
Some behaviors can indicate an underlying anxiety, such as drinking alcohol or taking recreational drugs, which can act as a type of “self medication.”
Approaches to managing anxiety in preschool and school aged children can vary, but have some common features. Once you have a concern that your child’s behavior could indicate that they are anxious, you need to try to identify the trigger for the behavior. Some triggers will be an essential part of everyday life, like learning to separate from you and go to childcare. Others will be things that are avoidable, like taking a different route to childcare or school.
If a trigger for anxiety is an essential part of life for your preschool child then providing some structure so events are predictable as well as soothing them and providing reassurance when they are distressed is ideal. Information can help events become more predictable and understandable, and this can decrease anxiety. Key is for information to be shared in a way that is appropriate for your child, using either words or pictures and when appropriate social stories or visual schedules at a level they understand. Making adaptations to events that are not avoidable is also reasonable. For example, separating from your child for a shorter period and gradually lengthening the separation period could be a useful strategy.
Soothing and reassurance can be gradually withdrawn, and at the same time positive feedback and rewards for coping offered. It is important that all the adults who are involved at the time when anxiety is triggered, like early child care workers who are there when you drop your child off, know the strategy that you are using and can continue it when you have gone. Distraction, by offering preferred activities, can also be very effective once anxious behavior begins to settle.
Introducing changes sufficiently slowly to minimize your child’s anxiety will take considerable time and patience, but could achieve enduring change and positive adaptation. It is preferable to plan for success initially by introducing change and transition gradually if you know this is a likely trigger. This is more likely to be successful than introducing a strategy after your child has had a powerful negative experience. Also important is sticking to the plan that you and others have developed and agreed to.
When you are trying hard to do these things it can be rewarding if all goes well, but frustrating if not, or if your child seems to suddenly become anxious about something different. For some children with autism a gradual reduction in anxiety and related behavior occurs, while for others the behavior can continue at a high intensity and then suddenly stop, or have a more fluctuating course. Keeping to a plan under these circumstances is challenging. Seek support from professionals, especially if things are not going according to plan. They can assist with modifying the plan if needed or by advising ways to monitor behavior so you have more objective ways of assessing improvement. Professionals have the advantage of emotional distance from your child, and this perspective is often crucial, especially when a behavior is distressing for you.
If your child is involved in an early intervention program then the professionals working with them will take anxiety and other problems that are commonly associated with autism in to account as they plan the early intervention program for your child.
School aged children
If your child or young person’s behavior changes suddenly, so they are more withdrawn or challenging, think about these behaviors as markers of anxiety and consider the possibility that bullying may be the trigger. Until you have explored this possibility either with your child, remembering children with autism have difficulty reflecting on the emotional aspects of their experience, or the school, you will not be certain whether it is occurring. The intervention for this is quite different to other interventions, so it is worth knowing about. If identified you will need to talk to the school about their policy and approach to stop bullying.
If your child has an acute panic attack, it is important to understand that it is not a medical emergency, and to offer reassurance and comfort. Use the usual strategies, like identifying known triggers, and also make sure your child is avoiding stimulants, like smoking or drinking energy drinks containing caffeine, and seek out relaxation activities.
For young people, learning to recognize signs of emotion in themselves and other people can reduce anxiety. There are several programs such as The Secret Agent Society, designed to help children with autism recognize and deal with signs of emotion in themselves and in others. There are also effective interventions based on cognitive behavior therapy. Cognitive behavior therapy relies on a level of understanding equivalent to most eight year olds. This type of therapy can be effective for identifying triggers and creating coping strategies.
If something more immediate is needed and other approaches have not worked, there are also effective drug therapies for anxiety. Expert medical advice is needed before starting this type of intervention. Whatever intervention you are starting it is important to work with the professionals involved to monitor progress in order to decide whether to continue or stop, to monitor side effects and to determine if alternatives are needed.
If obsessive-compulsive disorder is diagnosed then psychological therapies that are different to those used for other anxiety disorders can be effective. Medications may also be effective but expert advice and monitoring is needed.
Much of what we’ve written about may never occur in your child or young person with autism. However, knowing about anxiety can enable you to put in place approaches to avoid it, allow you to identify it early and help your child to learn to cope with it. If you think your child is anxious and the strategies you have tried aren’t working, then professional advice is important. Don’t forget, others have experienced the same problems and strategies are available to deal with them.
Professor Katrina Williams is the Chair of Developmental Medicine at Melbourne University and the Director of the Department of Developmental Medicine at the Royal Children’s Hospital. She was the inaugural president of the Australasian Society for Autism Research. Professor Jacqueline Roberts is the chair of autism at the Autism Centre of Excellence. Prior to this, she worked as a consultant on a variety of national projects in autism. She is a member of the executive committee of Australasian Society for Autism. Professors Williams and Roberts are the authors of Understanding Autism: The Essential Guide for Parents (Exisle Publishing 2015)
This article was featured in Issue 40 – Conquering Stress