How stress related to autism spectrum disorder affects families
Family members experience and respond to stress in different ways. There's no one right way of feeling or responding to your child with autism spectrum disorder (ASD). But it does help to be understanding of each other's feelings.
Feelings and stress
It's normal to feel a range of emotions. At different stages in your child's life, you might feel shock, sadness, anger, denial, loneliness and acceptance. These feelings can be a source of stress for you and other people in your family.
But these feelings are all stages in the grieving process, which parents of children with special needs often go through after getting a diagnosis. It's completely natural to feel any of these at any time.
After all, you might have imagined teaching your child his ABCs, hosting birthday parties, going to sports day or wondering what your child might be like as a teenager. What you had imagined might be different from the reality, depending on your child's abilities. You might need to adjust your expectations.
Whatever your feelings, it's important to recognise them and acknowledge that they're OK.
Different family members, different feelings
You and your partner might be at different stages in your feelings, which can also cause stress. Also, different things cause different people stress.
For example, mothers are often more stressed than fathers - possibly because mothers tend to be the primary caregivers in many families. Particular sources of stress for mothers include children's unpredictable sleeping patterns, difficulties with social skills, limited ability to express emotion, and fussy eating.
For fathers, children's difficult behaviour often seems to be a cause of stress.
Siblings of children with ASD also experience ASD-related stress. They're sometimes bothered by their siblings' behaviour difficulties - often because this behaviour embarrasses them or stops them from bringing friends home to play.
Members of the extended family can feel stress too, as they watch how the family is responding to the child with ASD.Stress not only affects family members as individuals but their relationships with each other as well. Looking after your family relationships can help with family stress management.
Family stress and autism spectrum disorder: common causes
Families with children with autism spectrum disorder (ASD) often experience more stress than other families. They can feel stressed because they:
- are coming to terms with the diagnosis
- feel overwhelmed by the things they don't yet know or understand about ASD and what it means for their children
- feel they have little control over the future for their children with ASD
- are having trouble handling children's challenging behaviour, including how children interact with others, eat or sleep
- are having trouble navigating the ASD service system, which is quite complex
- are finding it hard to manage daily life with children with ASD - doing things with a child with ASD can simply take longer and can often be quite frustrating
- worry about who can care for their children with ASD when they need a break.
Avoiding stress when you have a child with autism spectrum disorder
Although stress is part of life, there are some things you can do to avoid getting too stressed in the first place.
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 like autism spectrum disorder (ASD).
Looking after yourself
When you have a child with ASD, it's easy to forget to make time for yourself. But you can reduce the stress levels in your family by making sure that all family members - including you - have time to do things that make them feel good.
Get everyone to make a list of things that they enjoy. Try to make sure that everyone gets to do something from their list every day, or every couple of days. The lists should have a mix of activities that vary in cost and time. Having a range of activities on your lists can help ensure that everyone can do something they enjoy, even during busy times. A roster can help you keep track. If you put the roster somewhere that everyone can see it - the fridge door, for example - it can remind you to make fun part of your daily life.
Maintaining family traditions
Family traditions can give you a sense of stability, even in stressful times. You might have to modify your traditions to suit the needs of your child - for example, a weekend camping trip several hours away might need to be moved closer to home so you spend less time in the car.
Coping with stress
Although stress is part of family life, you can learn to cope with it more positively.
Support from family and friends
When a child gets a diagnosis of autism spectrum disorder (ASD), it can help to share this information with family and friends.
And it's good to ask for help. It could be as simple as asking an extended family member to babysit for a few hours one night, or asking an older niece or nephew to take your children to the park while you go shopping. This could turn into a fun activity for your child and extended family member, as well as giving you a break.
Respite care can give you a break from caring for your child with ASD and help you cope with stress. If you feel worried about leaving your child with someone outside the family, make some time for respite carers to get to know your child before you urgently need a break.
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 like '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, like '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.
Read our article on stress management for more information on signs of stress and tips for coping with stress.
Strategies for challenging behaviour
The challenging behaviour of children with autism spectrum disorder (ASD) causes parents and families a lot of 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 hard 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.
Stress management tips from parents of children with autism spectrum disorder
Parents of children with autism spectrum disorder (ASD) have found the following ideas and strategies useful for family stress management:
- 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 from yours. 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.
When he was three, Tom would run away on to the street. It was a constant worry to us. I would yell at him out of pure distress, telling him that he was really bad and naughty. Then I learned how to control my own stress, and think about his behaviour in a different way. I discovered what it meant to him (attraction to the neighbour's dog barking!). At the same time, I learned what I needed to do when he ran away. It all helped in the end.
If you need help to cope with stress, you have many 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. You can find your local centre by calling 1800 052 222.
- Financial assistance - contact the National Disability Insurance Scheme, your state or territory autism association or autism advisor to get started with accessing financial support.
- Support groups.