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Families of children with autism spectrum disorder (ASD) often report high levels of stress. This is a normal part of a family’s journey with ASD. In your family, you can develop effective ways to manage those stressful times.
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 others feelings.
Feelings and Stress
Its 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 a child 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 events 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 recognize 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 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 behavior is often reported as a cause of stress.
Siblings of children with ASD also experience ASD related stress. They report sometimes being bothered by their sibling’s behavior difficulties – often because their sibling’s behavior embarrasses them or stops them from bringing friends home to play.
Members of the extended family also often report stress, 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 relationship with your partner can help with family stress management.
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:
- Coming to terms with the diagnosis
- Feeling overwhelmed by the things they don’t yet know or understand about ASD and what it means for their child
- Feeling uncertainty or little control over the future for their child with ASD
- Having trouble handling a child’s challenging behavior, including how the child interacts with others, eats or sleeps
- Having trouble navigating the ASD service system, which is quite complex
- Managing daily life with a child with ASD – doing things with a child with ASD can simply take longer and can often be quite frustrating.
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 organized 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 spectrum disorder (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 everyone in the family – including parents – has time to themselves to do things that make them feel good.
Get everyone in the family 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 list should contain a mix of activities that vary in cost and time. By having a range of activities, you’ll help ensure that everyone can do something from their list, even during a very busy week. You might need to make a roster to help you keep track. If you put the list somewhere that everyone can see it – the fridge door, for example – it can remind you to make fun part of your daily life.
Maintain Family Traditions.
Keeping family traditions going can you give 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 groups and friends
When a family member gets a diagnosis of autism spectrum disorder (ASD), it can help to share this information with family and friends and let them know how they can help.
Actively Seek Support
Get some assistance 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.
And don’t be afraid 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.
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 practice positive self-talk, the more automatic it will become in your life. Start practicing in one situation that causes you stress, and then move on to another one.
Relaxation and Breathing Strategies
Practice some breathing exercises and muscle relaxation techniques. If you practice 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.
Strategies for Challenging Behavior
The challenging behavior of children with autism spectrum disorder (ASD) is 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 behavior, 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 behavior strategies that have been designed for your child. If you find it hard to put the behavior 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?
Stress Management Tips From Other Parents
Other parents have found the following ideas and strategies useful for family stress management:
- Make sure you prepare yourself for situations that causes you stress. This includes practicing 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 minimize 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 autism spectrum disorder (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 behavior in a different way. I discovered what it meant to him (attraction to the neighbor’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 several options:
- Counseling – although you don’t need a referral, you can ask your doctor to suggest someone appropriate.
- Respite care – contact your state or county autism association, or Department of Developmental Disabilities.
- Financial assistance – contact your state or county autism association to get started with accessing financial support
- Support groups.