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Caregiver Burnout & Strategies for Families of Children with Autism
An occupational therapy doctoral student from Western Michigan University, Jeanette Kymes, recently completed her capstone project at Wedgwood’s Autism Center for Child Development under supervision of Dr. Candice Lake. Here, she shares her writings and research as a resource for caregivers of children with Autism.
Message to Parents
If you feel like you’re constantly running on empty, you are not alone. Parenting a child with autism spectrum disorder (ASD) can be physically, mentally, and emotionally draining. It is common for parents to feel guilty if they spend time on themselves. It can be easy to forget to take care of yourself, leading to caregiver burnout.
Caregiver Burnout, Caregiver Stress, or Caregiver Exhaustion
Caregiver burnout can be defined as a state of physical, emotional, and mental exhaustion. The notion of burden of care entails distressing notions such as shame, embarrassment, feelings of guilt and self-blame (Kumari et al., 2009).
According to Stomsdorer (2018), common symptoms include:
● Increased fatigue, anxiety, and depression
● Loss of interest in previously enjoyed activities
● Changes in sleep patterns
● Getting sick more frequently
● Changes in appetite, weight, or both
● Withdrawal from friends and family
● Increased or excessive drug/alcohol use
● Feelings/thoughts of wanting to hurt themselves or others
The parents’ burden is affected by the following: disruptive behaviors of individuals with ASD, financial issues, changes in social relations, poor physical health, lack of social support, changes in daily routine, and poor ability to cope with stress (Alnazly & Abojedi, 2019).
Action Steps
Understand Fatigue
You can do this by taking time to reflect on your level of exhaustion/fatigue. Ask yourself the following questions: Do you feel excessively tired throughout the day? Did you have a restless night’s sleep? Did you sleep enough to deal with daily life responsibilities? Create a plan of care for yourself if the answers to these questions indicate fatigue.
Determine Cause of Stress
Make a list of every situation that has caused you anxiety. Break each item on the list down, laying out a flow chart of cause and effect. When the root cause of the stress is laid out in front of you, it is easier to find a solution.
Determine Quality of Spirituality
Take time to reflect by asking yourself the following questions: Do you make time to indulge in something you appreciate, such as painting or crafting, growing vegetables, a pastime, or even a daily diary? Do you go to a sanctuary, regularly meditate, or find a different way to express your religious views freely? Are you able to incorporate laughter into your daily life? Do you manage to spend quality time outside?
The final step is to determine your emotional self-care. Ask yourself if you have healthy coping mechanisms that allow you to replenish. Do you include practices in your daily life that allow you to replenish?
For more information or guidance on these action steps, Autism Spectrum Disorder: Practical Handbook for Caregivers in Self-Care by Churchill & Ross (2022) is recommended to review.
Self-Care Strategies
Parenting a child with ASD involves providing them with the best version of yourself, by taking care of your body and your mind. Finding enough time to care for yourself is hard when caring for a child with ASD. Deciding on at least one self-care activity to complete daily is recommended. Then, with time, aim to implement additional self-care activities. Examples of self-care strategies/activities are listed below.
● Ask for help. This is the hardest step since caregivers often feel they must do things on their own. Please do not let this be your truth. There are many resources available to assist caregivers. People genuinely care and want to help.
● Practice mindfulness. This can enhance self-awareness and self-regulation, leading to reduced distress (Hartley et al., 2021). You can do this by participating in guided meditation, guided imagery, visualization, or other exercises that can be practiced anywhere, anytime. Many exercises are available online and on apps (e.g., Headspace).
● Learn behavior management strategies. A study by Ladora et al. (2017) showed reduction in child disruptive behavior, improved child adaptive behavior, decreased parental stress and strain, and improved parental sense of competence. You can do this by participating in trainings that are offered every month to parents by Board Certified Behavior Analysts at Wedgwood’s ACCD.
● Eat well-balanced meals to increase energy levels, improve mood, and reduce symptoms of anxiety and depression (Brownn, n.d.). Cook more meals at home and prioritize fresh meat, vegetables, and fruit. Meal planning can be made easier by using apps, such as Mealime or Yummly.
● Move your body to improve your mental health and mood, as well as take time for yourself (Brown, n.d.). This could include taking a walk, being active at home, joining a fitness center class, or exercise program.
● Connect with nature. It has been known to increase relaxation and emotional and physical well-being and decrease stress, worry, and depression (Aarp, 2022).
● Seek out social support to buffer the impact of stress, reduce burden and depression levels, and improve quality of life (McGrew & Key, 2014). You could do this by formally joining a social support group (online or in person) and/or by keeping communication open with family and friends.
● Get quality sleep to improve both your physical and emotional health (Brownn, n.d.). Aim for 6-8 hours of sleep every night. Creating a comfortable sleeping environment and practicing good sleep hygiene can help you achieve this.
● Stay informed to decrease and improve knowledge about ASD (Patra et al., 2015). There are many ways to do this, such as reading evidence-based books/articles, communicating with health care professionals, and self-directed research.
By applying these strategies, ASD caregivers will be able to better manage and preserve their mental health. By doing so, they will succeed in providing the best level of care possible for their loved ones. This is a process that can take months, even years, so give yourself time to adjust.