Avoiding caregiver burnout: Caring for children with ASD
Published on 20 April 2022
Here’s a good rule of thumb in caregiving: put on your own oxygen mask first.
Such an approach may run contrary to a parent’s and caregiver’s natural instinct to put their child’s needs above their own. But caring for children is a challenging affair, often coming at the expense of a caregiver’s own mental, physical, and emotional health – and when a child has additional needs, such as autism spectrum disorder (ASD), caregivers may feel an even greater strain.
“Some parents and caregivers may feel guilty for needing a break, or for thinking of their own needs and wants,” said Ms Elizabeth Ragen, Senior Psychologist at the Child Development Unit (CDU), Khoo Teck Puat – National University Children’s Medical Institute (KTP-NUCMI) at the National University Hospital (NUH).
“The time for self-care seems impossible, and they may dismiss its importance, as they feel they have too much to manage…[often], they prioritise seeking help for the child but not for themselves, believing that they can and should shoulder the burden and manage everything.”
But when caregivers are able to take care of their physical and psychological needs, they may feel more empowered to handle the daily challenges of raising a child with ASD.
“This helps to promote a healthy environment for the child to develop and grow. This way, the parent or caregiver is likely to be in a better frame of mind, enabling them to better appreciate the parenting journey,” Ms Ragen added.
Avoiding caregiver burnout
With most conditions, prevention is better than cure – and caregiver burnout is no exception.
“We give our children vitamins and supplements regularly because we want to take care of their health, and not wait until they fall sick,” said Ms Evelyn Soh, Senior Medical Social Worker at KTP-NUCMI at NUH. “Similarly, we need to take care of ourselves regularly, and in small steps.”
First, it’s important to recognise the signs of burnout. Stress and burnout can present in different ways: emotional symptoms such as feeling upset or worried, mental symptoms such as having low energy and difficulty concentrating, or physical symptoms such as fatigue and changes in appetite and sleep.
Second, parents and caregivers should take steps to care for themselves. Here are four tips that may be helpful:
1. Practise self-compassion.
Caregivers often focus on the care of their child or ward, and may overlook their own needs. “Please try to be kind to yourself,” said Ms Pang Lee Yien, also a Senior Medical Social Worker at KTP-NUCMI. “Be patient and forgiving towards yourself, and know that your caregiving is significant and meaningful in making your child feel loved and safe.”
She added: “Just as every child is unique, there is no one-size-fits-all approach to caring for a child with autism. What works for one may not work for someone else, and vice versa.
When things don’t go your way, it’s easy to feel overwhelmed. In such scenarios, Ms Pang encouraged parents and caregivers to take each day one step at a time.
“Focus on what is within your control,” she said. “It can be helpful to try breaking a task up into smaller parts…and try to relook ways to manage your time, such as making a to-do list. Make sure to include things that you enjoy [too] – if you don’t plan for it, other, more pressing things are likely to take over.”
To avoid feeling overwhelmed, Ms Pang encouraged parents and caregivers to set healthy boundaries for themselves.
“Allow yourself to say no – agreeing and committing to too many things can be stressful,” she said. “Try to manage expectations and set realistic short-term goals, and avoid comparing yourself to another parent or caregiver’s goals and life.”
3. Seek support from family, friends, or support groups.
As a quote from columnist Rona Barrett goes: “The healthy and strong individual is the one who asks for help when he needs it.”
“Sometimes, caregivers of children with special needs try to take on all the responsibility of caring for the child by themselves,” said Ms Soh. “But it’s important to seek support if needed, especially if you notice signs of burnout.”
She added that parents and caregivers can reach out to their loved ones for support before things get overwhelming.
“Let others know how they can help you!” she shared. “For example, you could ask a friend or family member for help with the groceries or cooking for the week.”
Apart from seeking support from loved ones, there are many other sources of support available – for instance, autism-related support groups, Ms Soh said.
“When you hear from and connect with others who have common experiences, it can remind you that you are not alone, and energise you in your parenting journey,” she said.
She also encouraged caregivers to be open to seeking support from professionals, if the need arises.
“For instance, you can attend caregiving courses to equip yourself with skills to empower and support you in providing care…or you could seek guidance and support about the practical aspects of caregiving, such as planning for your child’s future financial security,” she explained.
4. Set aside time for self-care.
Finally, parents and caregivers should not neglect their self-care.
Caregivers can set aside a realistic amount of time daily for this. “For example, thirty minutes in the morning before the family wakes up,” suggested Ms Soh.
Such personal time can be spent engaging in activities such as connecting with loved ones, or doing things that give you energy (e.g. going for a short walk, listening to your favourite song, writing).
And it’s important that when participating in these activities, caregivers should be “present”, said Ms Soh.
“What this means is that instead of being caught up in your thoughts or worries, you engage your five senses to focus on what is happening around you in that moment,” she explained. “For example, if you’re outdoors, focus on enjoying the breeze, feel the sun shining on you, listen to the birds chirp, and breathe in the fresh air. Be mindful of your surroundings.”
“You can try this when you feel overwhelmed during the day, and just need a short time-out.”
Not sure where to start? Check out these self-care guides by the NUH KTP-NUCMI team.
Running a marathon
Ultimately, raising a child is very much like running a marathon, not a sprint.
With all the challenges that can come with parenthood, “it’s essential to pace yourself to keep up mentally and physically,” said Ms. Ragen. “Sometimes, that means slowing down, and that’s OK.”
More importantly, caregivers should remember that they matter too, and take some time off for themselves. This is likely to benefit them and their child.
“Along the way, try to find ways to re-energise yourself so that you can go the distance, and enjoy the journey with your child,” she concluded.
Speak to your doctor to learn more about the resources available for parents and caregivers of children with ASD or visit this page.In consultation with Ms Elizabeth Ragen, Senior Psychologist, CDU, KTP-NUCMI, NUH; Ms Pang Lee Yien, Senior Medical Social Worker, CDU, KTP-NUCMI, NUH and Ms Evelyn Soh, Senior Medical Social Worker, CDU, KTP-NUCMI, NUH.