Anxiety and autism
About 40 percent of autistic children experience challenges with anxiety.[1] Anxiety can have an array of impacts on the lives of autistic children and their families. Some impacts include difficulty going shopping, using public transport, attending appointments, attending school and in social situations.[2] There are many complex reasons why anxiety is thought to be such a huge challenge for autistic individuals, but one focused on here is uncertainty.
Difficulties with uncertainty can be thought of as the ‘fear of the unknown’, which can be uncomfortable and distressing for many children, not just autistic children. This type of fear comes from a belief or expectation that not knowing what will happen might be negative or harmful and should therefore be avoided. It is important to note that we can all experience difficulties managing uncertainty in our everyday lives, and this can sometimes be distressing to manage. Think about the early days of the COVID-19 pandemic, when we didn’t know what might happen and how difficult this lack of information was for many people to cope with.
However, when this inability to cope with uncertainty becomes something that impacts a child’s everyday life or affects their quality of life, this is referred to in the research literature as ‘intolerance of uncertainty’. Difficulties coping with uncertainty can lead to a range of emotional and behavioural reactions to situations or events that can negatively impact both children and families.[3]
How does anxiety related to uncertainty impact kids and families?
For some children, difficulties coping with uncertainty can lead to missing out on activities or opportunities, such as birthday parties, going to school, and developing friendships. Parents may also find themselves adjusting the way their family do things to help manage or reduce their child’s anxiety. This can include preparing their child for situations, providing support and reassurance to their child during situations or even avoiding events altogether. These can all be important and valid ways to help support a child manage how they feel about an event or situation. However, for some, these adjustments or avoidance of activities can be tough to cope with. Sometimes this can lead to parents feeling tired or feeling as though they are unable to relax because they are also worried about how their child may cope in an unknown environment. Parents sometimes report feeling saddened by their child’s distress in uncertain situations and that they are concerned about the future for their child and family.
What can anxiety related to uncertainty look like for autistic children?
It can be hard to know how children, especially young children, are feeling – particularly when they may be anxious about an uncertain situation. Children who experience difficulties with uncertainty can show this in different ways, which may vary depending on the situation or level of anxiety about that situation. Some children may engage in repetitive behaviours or stims, such as jumping, hand or arm movements or chewing.[2] Children may also ask a lot of questions in advance of a situation, to help them understand what may happen and prepare for an upcoming event.[2] For those asking lots of questions in advance of situations, having answers to their questions may not help reduce their anxiety. Some children show they are distressed or upset using less words and in more behavioural ways, such as increased crying, physical expressions or distress, hiding, or running away.[2]
What situations can be uncertain for children?
There are many types of situations that can lead to uncertainty for autistic children. However, the type of situations that can lead to uncertainty can vary among younger and older children, depending on what activities are age appropriate for them and their developmental stage:
- Sensory experiences (e.g. when a hand dryer will go off in a public toilet)
- Social interactions (e.g. uncertainty when playing with other children)
- Public events (e.g. birthday party or family events)
- Changes in plans or routines
- Changes in transportation routes
- School, homework, tests and assignments
- Public excursions (e.g. shopping)
- Extra-curricular activities (e.g. after school clubs or sports)
- New situations
What is CUES©?
CUES stands for Coping with Uncertainty in Everyday Situations©. This is a parent/primary caregiver group program that was developed by researchers from The University of Newcastle (UK) that supports caregivers with learning how to recognise intolerance of uncertainty, how to identify factors that could trigger intolerance of uncertainty and empowers parents to develop a plan to use with their child in uncertain situations that are meaningful for them. These plans include strategies that parents could use to support their child in an uncertain situation. The program consists of eight two-hour sessions typically run in the clinic setting.
The CUES© program was originally developed for school-aged children (8-16 years of age), with research finding the program is feasible to deliver to families and promising evidence for reducing anxiety in children.
Our researchers at CliniKids have worked with the original developers of this program to develop and trial a younger version of this program called CUES-Junior, for children diagnosed with autism aged 4-7 years experiencing uncertainty-related anxiety. We recently completed a trial of CUES-Junior to understand if this program may also be beneficial for families of younger children. We found that the program was acceptable to families, with the program having significant benefits on parental stress and anxiety. The program was also found to have a significant effect on uncertainty-related anxiety in children.
Having a child who has trouble with uncertainty can have functional impacts on families, who can find themselves avoiding activities and situations. This can feel quite isolating for some families. Our research found that participating in CUES-Junior groups provided an opportunity for parents to connect with a community of people with a shared experience, while learning strategies to support their child with uncertainty.
We are currently still conducting research on the CUES-Junior group program and have adapted the program to deliver groups online so that families around Australia can participate. If you would like to find out more about this research, visit the research webpage here.
References
1. van Steensel, F.J.A., S.M. Bögels, and S. Perrin, Anxiety Disorders in Children and Adolescents with Autistic Spectrum Disorders: A Meta-Analysis. Clinical child and family psychology review, 2011. 14(3): p. 302-317.
2. Goodwin, J., et al., Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families. Autism : the international journal of research and practice, 2022. 26(4): p. 827-838.
3. Buhr, K. and M.J. Dugas, The role of fear of anxiety and intolerance of uncertainty in worry: An experimental manipulation. Behaviour research and therapy, 2009. 47(3): p. 215-223.