Combatting Caregiver Burnout: Self-Care for Parents of Children with Autism

Parenting is a challenging, albeit rewarding experience for most parents. However, for parents of children with autism spectrum disorder (ASD) and other neurodivergences, parenting can be tremendously more difficult. Research has shown that parents of children with ASD experience higher levels of stress, depression, and burnout compared to parents of neurotypical children (Yesilkaya & Magallón-Neri, 2024; Kütük et al., 2021).

Navigating therapy schedules, managing challenging behaviors, advocating for adequate support, and coping with familial and societal pressures can take an emotional and physical toll on moms, dads, and other caregivers. Without support and self-care, chronic stress can lead to parental burnout. Let’s explore the concept of burnout and consider some practical strategies parents of children with special needs can take to prioritize self-care.

What is Caregiver Burnout?

Burnout is an increasingly common phenomenon in workplaces, especially those in helping professions, such as social work and the medical field. However, somewhat less talked about is parental or caregiver burnout. Caregiver burnout involves physical, emotional, and mental exhaustion as a result of prolonged stress from caring for a child. While this is not exclusive to parents of autistic children, parental burnout is more common in parents of children with special needs due to the additional stressors placed on these parents.

Every parent experiences stress from time to time–but what makes caregiver burnout different is the chronic stress that builds up when parents have minimal self-care practices and a lack of support. If left unchecked, burnout often leads to depression. Burnout can negatively impact not only the parent but their children as well.

What are the Signs of Parental Burnout?

If you’re not sure whether you or someone you love may be experiencing parental burnout, consider these common indicators.

  • Physical and emotional exhaustion: Extreme fatigue, often feeling overextended and depleted of energy.
  • Emotionally detached: Distancing oneself from their children, spouse/significant other, or others in their life.
  • Feelings of incompetence: Feeling unproductive, unable to manage responsibilities, or “not good enough”.
  • Physical discomforts: Headaches, digestive issues, muscle tension, or other new physical ailments.
  • Increased irritability: Frequent mood swings, including easily agitated or irritable.
  • Sleeping challenges: Poor sleeping habits, such as insomnia.

The Importance of Self-Care for Parents of Children with Autism

As parents of children with autism likely know all too well, finding the time for self-care is not easy. Children’s needs often come above our own–and when a child has more substantial needs, it can be incredibly challenging to balance parental responsibilities with self-care. However, making time for yourself is critical. As the adage goes, you cannot pour from an empty cup. Unfortunately, many parents of children with special needs do consistently pour from an empty cup. Somehow, in some way, they make it work, but at what cost?

Self-care does not have to involve a trip out of town without the kids, a luxurious spa day, or other activities that are often time and cost-prohibitive. There are many ways to prioritize self-care through small actions. Reframing self-care as an essential aspect of parenthood can help parents place a higher emphasis on it in their day-to-day lives. Parents deserve to engage in activities that bring them joy and children deserve happy, fulfilled parents.

Tips for Managing Parental Stress & Prioritizing Self-Care

Now that we’ve explored the concept of burnout, let’s consider some practical strategies parents can try to manage stress and prioritize self-care. We recognize everyone’s situation is vastly unique. What may work for one family does not work for another. Use whichever strategies resonate best for you and your family.

  1. Find a support system.Limited support has been linked to an increased likelihood of parental burnout. Above all, finding and leaning on a support system is the #1 way to manage parental stress. Support is not a one-size-fits-all thing. It can come in many ways. Consider the following ways to leverage a support network.
  • Family & Friends–If you have family, friends, neighbors, or other trusted people in your life, don’t be afraid to ask for help. You’re not burdening others by asking for support–whether you need help with babysitting so you can run a few errands or you simply need an ear to vent to.
  • Parent Support Groups–There are many support groups for parents of neurodivergent children. Communicating with other parents who experience similar struggles can help parents to feel less alone in their challenges. You can locate a parent support group in your area here. Social media parent support groups for parents of children with autism may be beneficial to explore as well.
  • Therapists–If you’re struggling to navigate special needs parenting, consider seeking a therapist of your own. They can provide individualized recommendations for managing stress and other challenges related to caring for your child.

  • Parent Training–If your child attends ABA therapy, lean on their Board Certified Behavior Analyst (BCBA) for support. They can offer parent training to help you navigate the unique challenges within your family to reduce parental stress.
  • Respite Care Providers–Everyone needs a break from time to time. Seek out respite providers to offer some relief. You can locate respite care providers here.  If cost is a barrier, many states have vouchers or waiver programs that provide funding for respite care. In North Carolina, families can apply for the Lifespan Respite Voucher Program, which provides up to $750/year in respite care funding.

  1. Make time for yourself.As a parent of a child with special needs, “me time” is likely minimal, however, it’s necessary to find even small moments of alone time. Take some time to think about what truly makes you happy–outside of being a parent. What brings you joy? What activities–however small–can you engage in to reduce your stress levels and prevent burnout? Here are a few ideas.
  • Take a short walk
  • Enjoy a bubble bath or shower alone
  • Listen to music or a podcast while doing everyday activities
  • Wake up a few minutes early to enjoy a cup of coffee before the kids wake up
  • Read a book or watch your favorite TV show
  • Write in a journal
  • Stretch or exercise
  1. Practice mindfulness.Mindfulness activities can help parents engage in more self-compassion, better regulate their emotions, and respond to difficult situations within their family. Research has found that when parents engage in mindfulness-based practices, they not only experience lower levels of stress but also lessen their children’s challenging behaviors (Benn et al, 2012; Singh et al., 2014). Learn more about how to practice mindfulness in this Psychology Today article.
  2. Develop routines and consistency.It’s often said that children with autism thrive on consistency. While this is true, it’s not only the children that do well with routines—parents do as well. Establishing predictable daily routines can help reduce stress and anxiety for the entire family by creating a sense of stability and minimizing unexpected challenges.

  1. Find the positive

It won’t always be easy–but strive to notice the positive things in your life, no matter how small. Celebrate the minor wins, whether it’s getting a few extra minutes to yourself, watching your child learn a new skill, or getting outside and enjoying the sunshine together.

Parental Self-Care is Not Selfish

Parenting a child with autism comes with unique challenges. It’s important to recognize throughout the highs and lows that self-care is not selfish–it’s necessary. Parents must prioritize self-care and seek support to prevent caregiver burnout.

At CompleatKidz, we’re here to support the whole family. Our team of multidisciplinary care providers offer parent training and support to guide parents through the challenges of raising a child with autism. Your wellbeing matters to us. Looking for pediatric therapies in North Carolina? Reach out to our intake team today!

References

Benn, R., Akiva, T., Arel, S., & Roeser, R. W. (2012, March 12). Mindfulness Training Effects for Parents and Educators of Children With Special Needs. Developmental Psychology. Advance online publication. doi: 10.1037/a0027537

Kütük, M. Ö., Tufan, A. E., Kılıçaslan, F., Güler, G., Çelik, F., Altıntaş, E., Gökçen, C., Karadağ, M., Yektaş, Ç., Mutluer, T., Kandemir, H., Büber, A., Topal, Z., Acikbas, U., Giray, A., & Kütük, Ö. (2021). High Depression Symptoms and Burnout Levels Among Parents of Children with Autism Spectrum Disorders: A Multi-Center, Cross-Sectional, Case-Control Study. Journal of autism and developmental disorders, 51(11), 4086–4099. https://doi.org/10.1007/s10803-021-04874-4

Singh, N. N., Lancioni, G. E., Winton, A. S. W., Karazsia, B. T., & Singh, J. (2014). Mindfulness-based positive behavior support (MBPBS) for mothers of adolescents with autism spectrum disorder: Effects on adolescents’ behavior and parental stress. Mindfulness, 5, 646–657. https://doi.org/10.1007/s12671-014-0321-3

Yesilkaya, M., & Magallón-Neri, E. (2024). Parental Stress Related to Caring for a Child With Autism Spectrum Disorder and the Benefit of Mindfulness-Based Interventions for Parental Stress: A Systematic Review. SAGE Open. https://doi.org/10.1177/21582440241235033