Autism spectrum disorder and family stress

How ASD-related stress affects the family

Family members experience and respond to stress in different ways. There’s no one right way of feeling or responding to your child with ASD. But it does help to be understanding of each other’s feelings, and the things that cause different people stress.

For example, mothers often report feeling stressed more than fathers – possibly because mothers tend to be the primary caregivers in the majority of families. Particular sources of stress for mothers include their children’s unpredictable sleeping patterns, limited ability to express emotion, and fussy eating. For fathers, children’s difficult behaviour is often reported as a cause of stress.

Siblings of children with ASD also report sometimes being bothered by their sibling’s behaviour difficulties – often because their sibling’s behaviour embarrasses them or stops them from bringing friends home to play. And relatives often report stress as they see how the family is responding to the child with ASD.

Family stress and ASD: common causes

Research tells us that families with children with ASD often experience more stress than other families. Families report several reasons for this, including:

• feelings of being overwhelmed by the  things they don’t yet know or understand about ASD and what it means for their child
• uncertainty or the feeling of having little control over the future for their child with ASD
• difficult behaviours of the child with ASD, including how the child interacts with others
• difficulty navigating the ASD service system, which is quite complex
• challenges of daily life with a child with ASD – doing things with a child with ASD can simply take longer and can often be quite frustrating.

Coping with stress

Although stress is part of family life, you can learn to cope with it more positively.

Positive thinking and self-talk
Positive thinking and positive self-talk are effective ways of dealing with stress. They increase your positive feelings and therefore your ability to cope with stressful situations.

For example, you might have a negative thought such as ‘People probably think I’m a bad parent’. You can challenge it by asking yourself, ‘How do I know that people will think this?’ You might also use more positive thoughts, such as ‘Who cares what other people think?’, ‘I can do this’, or ‘I will stay calm’.

The more you practise positive self-talk, the more automatic it will become in your life. Start practising in one situation that causes you stress, and then move on to another one. 

Relaxation and breathing strategies
Practise some breathing exercises and muscle relaxation techniques. If you practise and use relaxation exercises as soon as you feel signs of stress, or when you know you’re going into a situation that makes you stressed, it can calm things down.

You could even consider setting aside a little bit of time each day for relaxation or meditation. Even 10 minutes at the beginning or end of the day could be enough. This might help you sleep better and feel more positive during the day.

Support groups and friends
Actively seek support from friends and family members who understand you and your child with ASD. It can really help to feel that other people know you’re going through tough times. It can also help to share feelings, ideas and information. Other people might be able to suggest ways you can manage your stress, or change the things that cause you stress.

For online support and sharing, check out our forum for parents of children with ASD.

Strategies for difficult behaviours
The difficult behaviours of children with ASD are one of the things that cause parents and families the most stress.

It helps to pay particular attention to the specific situations that seem to trigger your child’s behaviour, and to how or why this causes you stress. When you know about situations that cause stress, you can either avoid or change them.

It’s also very important to try to stick with the behaviour strategies that have been designed for your child. If you find it difficult to put the behaviour strategies into action, try to work out what’s causing the difficulty. For example, do you feel your child isn’t responding to the strategies? Or are you having trouble understanding what you’re supposed to do? Whatever it is, you can ask your early intervention provider for help.

Tips from other parents

• Make sure you prepare yourself for situations that cause you stress. This includes practising healthy coping responses to these situations.
• The more you know about how your child’s individual ASD characteristics affect your child’s learning and development, the better equipped you’ll be to minimise and prevent your stress.
• Be aware that your partner and other children will respond differently to your child with ASD. Their experiences of stress will also be different. They might need different kinds of support from you.
• Connect with service providers and other parents in similar situations so your family feels competent and supported.
• Accept that there will be ups and downs in your family as a result of living with ASD.

Avoiding stress

As well as managing stress, there are some things you can do to avoid getting too stressed in the first place.

Getting organised
Stress is often related to the feeling that things are out of your control. Getting organised is a very effective way to get things – including your stress levels – under control.

In your daily life, for example, focus on getting one thing done at a time. Try to put some family routines into action. You can adjust routines for children with disabilities such as ASD.

Looking after yourself
When you have a child with autism, it’s easy to forget to make time for yourself. But you can reduce the stress levels in your family by making sure that everyone in the family – including parents – has time to themselves to do things that make them feel good.

Getting help

If you need help to cope with stress, you have several options:

• counselling – although you don’t need a referral, you can ask your GP to suggest someone appropriate
• respite care – contact your state or territory autism association, or a Commonwealth Respite and Carelink Centre
• financial assistance – contact your state or territory autism association or autism adviser to get started with accessing financial support
• support groups.

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