As the parent of a child with autism spectrum disorder (ASD), life may be filled with emotional ups and downs. Periods of calm can abruptly shift to episodes of intensely challenging behavior that disrupt family equilibrium. Likewise, deeply difficult days can soften to reveal moments of great joy. The chaos of parenting a child with ASD can trigger persistent stress that may overpower a parent’s coping resources.
Does this sound familiar?
Parents and caregivers (referred to as parents for the duration of the article) devote countless hours to the treatment of their child(ren) with ASD – coordinating intervention schedules, traveling, collaborating with therapists, learning new strategies, and implementing treatment approaches at home – while also attending to the demands of daily life. Ample research indicates that mothers of children with developmental disabilities are at greater risk for more stress, psychological distress, and poorer health than mothers of typically developing children (Miodrag & Hoadpp, 2010; Estes et al., 2009). A growing literature base also suggests that mothers of children with ASD experience higher levels of distress than parents of children with other developmental disabilities, such as Down syndrome and Fragile X syndrome (Cachia, Anderson, & Moore, 2016; Estes et al., 2009). More specifically, mothers of children with autism experience more stress, including chronic stress; greater psychological distress (e.g., symptoms of anxiety and depression); more pessimism; and lower positive perceptions of their child, when compared to mothers of children with non-autism developmental delay and no developmental delay (Abbeduto et al., 2004; Estes et al., 2004; Griffith, Hastings, Nash, & Hill, 2010).
Research suggests that higher levels of child behavior problems are related to parenting stress and psychological distress in mothers (Abbeduto et al., 2004; Estes et al., 2004; Griffith, Hastings, Nash, & Hill, 2010). It is notable that much of the research focuses on mothers, but some studies incorporate father experiences. For example, a recent study examined how child behavior is related to stress and coping strategies in mothers and father and supported that child behavior influences both parents (Lyons, Leon, Roecker-Phelps, & Dunleavy, 2010). Stress experienced by both parents can reduce the effectiveness of early intervention, in part, because it influences parent ability to successfully use interventions at home (Cachia, Anderson, & Moore, 2016; Estes et al., 2009; Osborne, McHugh, Sanders, & Reed, 2008). Chronic stress may also result in increased problem behaviors in children and decreased child well-being and/or developmental progress (Cachia, Anderson, & Moore, 2016; Dykens, Fisher, Taylor, Lambert, and Miodrag, 2014). These factors create a cycle of difficulty. Challenging child behavior triggers stress, and stress makes it difficult to intervene effectively; less effective intervention can then lead to more challenging behavior (Estes et al., 2009).
Gaps in Parent-Oriented Services
Despite the knowledge that parent factors influence child behavior as well as treatment and outcomes, services for children with ASD are primarily child-focused (Dykens, et. al., 2014). Child-oriented services for children with developmental disabilities may be associated with modest parent benefits, such as reduced maternal stress; however, they do not treat the mental health of parents (Singer, Ethridge, & Aldana, 2007). Parents of children with ASD need strategies and support to improve their mental health, for the overall well-being of their children and themselves.
Finding strategies to manage parental stress
Caring for yourself may feel like another daunting task added to your never-ending list of to-dos. More-so when parent-oriented services seem scarce and your days are already packed. Our concern with the limited support regarding the parental experience lead to a conversation with Dr Neill Broderick PhD, an Instructor of Pediatrics and Licensed Psychologist at the Vanderbilt University Medical Center/Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD; http://vkc.mc.vanderbilt.edu/vkc/triad/). She serves as a therapist for parents of children with ASD who are learning to use Mindfulness-Based Stress Reduction techniques in their daily lives as a component of ongoing research.
Empirical evidence indicates that Mindfulness training reduces stress and improves psychological well-being in a variety of populations, including those who care for people with lifelong conditions (Cachia, Anderson, & Moore, 2016). In fact, research suggests that Mindfulness training can change the brain in areas that influence attention, emotional regulation, mood, psychological well-being, and behavior (Cachia, Anderson, & Moore, 2016; Davidson et al., 2003; Jha, Stanley, Kiyonaga, Wong, & Gelfand, 2010).
Recent studies support the effectiveness of Mindfulness training with parents of children with developmental disabilities (Cachia, Anderson, & Moore, 2016; Dykens et al., 2014; Jones, Hastings, Totsika, Keane, & Rhule, 2014; Neece, et. al., 2014). More specifically, this literature revealed reduced stress, anxiety, and depressive symptoms in parents; decreased challenging behavior in children; and enhanced mother-child interactions (Dykens, et. al., 2014; Myers, et. al., 2014; and Neece et. al., 2014).
In what follows, Dr. Broderick will offer some specific advice on how to address the intense stress that parents experience based on a manualized treatment developed by Dykens et al., 2014. The manual created by Dykens et al. (2014) serves as the basis for the research in which Dr. Broderick is involved.
What is Mindfulness?
Mindfulness is a new way of relating to the events and situations in your life. It involves attitudes and practices to promote skillful management of life’s challenges. Mindfulness encourages “paying attention in a particular way; on purpose, in the present moment and nonjudgmentally” (Kabat-Zinn, 1994). It asks us to intentionally focus on the present with an open heart and mind to build our self-awareness and self-management.
What is Mindfulness-Based Stress Reduction (MBSR)?
Mindfulness-Based Stress Reduction (MBSR) refers to a program that has organized the underlying philosophy of Mindfulness into user-friendly ideas and strategies. Parents can learn Mindfulness through MBSR (or other similar programs) and apply it to their daily lives, but it is a practice that is most effective when supported by a person who is familiar with Mindfulness attitudes and practices.
Mindfulness asks us to nurture new attitudes, including the following:
- An open-heart
- Try to keep your heart open to, and avoid judgment of, yourself and others.
- We often evaluate ourselves, our experiences, and others. Mindfulness asks you to be open to yourself, others, and life events without evaluating.
- An open-mind
- Try to approach life experiences with fresh eyes, rather than allowing your history to influence what you see. Attempt to take in experiences as if it were your first time to do so.
- Looking at the world differently and cultivating new attitudes requires time. Try to be patient with yourself and others as you grow.
- Loving kindness
- Be gentle with yourself. Show unconditional kindness and love to yourself and others.
- Try to be rather than do
- We are busy people. At times, we can get caught up in our activities and to-dos. Mindfulness asks us to be present in the moment, rather than anticipating the next step of action.
- Try to let things be
- Life may not always give us what we hoped, and that can be very challenging. You do not need to like the present moment, but you can try to accept it for what it is.
What Mindfulness is Not
In order to better understand Mindfulness, we should address some myths about it:
- Mindfulness is comprised of simple concepts but the practice may not be easy. It asks us to try a different approach to problems, and change can be challenging.
- Though it can be challenging at first, Mindfulness is not intended to add stress to your life. It is stress reduction, after all.
- Mindfulness emphasizes stress reduction, but, unfortunately, it cannot offer problem reduction. Life inevitably involves problems. Mindfulness helps you navigate them more skillfully.
- Mindfulness does not require you to meditate at great length. It includes formal practices, such as meditation, and informal practices that you can use in day-to-day life.
- Meditation is not “clearing your mind.” Our minds cannot be cleared; they are always working. Furthermore, our minds do great work. Mindfulness encourages that we use our great minds differently, and mindful practices help us do so.
- Mindfulness is not intended to replace spirituality, religion, or faith.
Mindfulness involves practice. As parents, it can be difficult to find time to care yourself. Mindfulness asks that you set aside time to nurture yourself. If you care for yourself, you can better care for you family.
Regular practice is important. When you practice mindfulness regularly, you can more easily call upon the strategies in highly stressful situations.
Mindful practices are both formal and informal. Formal practices involve setting aside time to engage in mindfulness in specific ways. Informal practices allow us to engage mindfulness on-the-go, when we’re living our busy lives.
Mindfulness asks us to pay attention to the present moment using our mindful attitudes.
We can turn our focus to specific aspects of our experience to help us be present in the moment.
Focus attention on the breath. The sensation of breathing provides an anchor that we can return to in times of stress. We can use breath awareness at any time and in any location, for example:
- Take a few minutes each day to pay attention to your breath. Just notice inhaling and exhaling. If your mind wanders to other topics, that’s OK. Gently bring it back to your breath.
Similar to breath awareness, body awareness provides a concrete way to focus on the present:
- Take a few minutes each day to notice the sensations in your body. Do you have sore muscles? Do you feel tension in parts of your body? Just take time to be aware of your body and the sensations within it.
Bringing Awareness to Thoughts and Feelings
With support from someone with training in Mindfulness or MBSR, you can also use build awareness of thoughts and feelings. This process asks you to be curious and explore your thoughts and feelings. When we better understand our thoughts and feelings, we can more effectively regulate them in productive ways.
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Mindful Daily Activities
Parents are very busy. You move from one activity to the next while juggling many different schedules and tasks. We may find ourselves moving through activities mindlessly or on auto-pilot. We can become so busy anticipating what happens next, that we may not attend to what’s happening now. Try to draw your attention to what is happening in the moment. For example:
- While you’re brushing your teeth, think about the experience of brushing your teeth rather than your to-do list.
- While you’re preparing food, think about the preparation and the food in front of you, rather than doing the dishes.
- While you’re eating, take time think about each bite. Notice the smells, flavors, and textures. Pay attention to how your body feels as you eat.
Mindfulness helps us to tolerate stressful events in our lives. Mindfulness also emphasizes building a focus on positive aspects of our lives, including the things that make us feel grateful. What makes you feel grateful? Take time each day to think about it. You may even make a list or keep a journal.
Meditation may be a new experience for many people. When learning to practice meditation, it is important to have guidance and support for someone trained in Mindful meditation. There are several types of meditation practice. A few are mentioned below:
Body scanning is one type of meditation. It involves mentally moving from one end of our body to the other (e.g., head-to-toe or toe-to-head), noticing sensations in each part of your body. As you focus on each part of your body, recognize any stress, pain, or frustration that may be located there. Just noticing our sensations may help us release some of the associated stress and discomfort.
A seated meditation allows us to be comfortable but attentive while practicing our mediation. During a seated meditation, try to allow yourself 15 to 20 minutes of time to be present in the moment. Remember, you are not clearing your mind. You are actively but non-judgmentally observing different aspects of yourself and your environment, including, but not limited to: sounds in your proximity, bodily sensations, thoughts, and feelings.
Colin Rhodes is an experienced healthcare IT executive with sixteen years’ experience working in medical imaging and clinical trials. Colin holds a bachelor’s degree with honors in Pure Mathematics and Computer Science as well as a Master’s degree in Computer Science from the University of Queensland. He has an eight-year-old son with ASD.
This article was featured in Issue 47 – Motherhood – An Unconditional Love
For Additional Information
The references listed below include information by well-known researchers and authors in the field of Mindfulness. These website may help to enhance your knowledge, but this list is not exhaustive. We do not endorse any approach, but encourage to explore literature for yourself.
- Center for Mindfulness in Medicine, Health Care, and Society – http://www.umassmed.edu/cfm/
- Eckhart Tolle – http://www.eckharttolle.com/
- Plum Village – http://plumvillage.org/about/thich-nhat-hanh/
- The Pema Chodron Foundation – http://pemachodronfoundation.org/
Abbeduto, L., Seltzer, M.M., Shattuck, P., Krauss, M.W., Orsmond, G., Murphy, M.M., & Floyd, F. (2004). Psychological well-being and coping in mothers of youths with autism, down syndrome, or fragile x syndrome. American Journal of Mental Retardation, 109, 237-254.
Cachia, R.L., Anderson, A., & Moore, D.W. (2016). Mindfulness, stress and well-being in parents of children with autism spectrum disorder: a systematic review. Journal of Child and Family Studies, 25, 1-14.
Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X.H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism down syndrome, behavior disorders, and normal development. Exceptionality: A Special Education Journal, 2, 97-110.
Davidson, R.J., Kabat-Zinn, J. Schumacher, J., Rosenkrantz, M., Muller, D., Santorelli, S.F., & Sheridan, J.F., (2003). Alterations in brain and immune function produced by mindfulness meditation. Psychosomatic Medicine, 65, 564-570.
Dykens, E.M., Fisher, M.H., Taylor, J.L., Lambert, W., and Miodrag, N. (2014). Reducing distress in mothers of children with autism and other disabilities: a randomized trial. Pediatrics, 134(2).
Griffith, G.M., Hastings, R.P., Nash, S., & Hill, C. (2010). Using matched groups to explore child behavior problems and maternal well-being in children with down syndrome and autism. Journal of Autism and Developmental Disorders, 40, 610-619.
Jha, A.P., Stanley, E.A., Kiyonaga, A., Wong, L., & Gelfand, L. (2010). Examining the protective effects of mindfulness training on working memory capacity and affective experience. Emotion, 10, 54-64.
Jones, L., Hastings, R.P., Totsika, V., Keane, L., Rhule, N. (2014). Child behavior problems and parental well-being in families of children with autism: the mediating role of mindfulness and acceptance. American Journal of Intellectual and Developmental Disabilities, 119 (2), 171-185.
Kabat-Zinn, J. (1994). Wherever you go, there you are. New York, NY: Hyperion Books.
Lyons, A.M.,Leon, S.C., Roecker-Phelps, C.E., & Dunleavy, A.M. (2010). The impact of child symptom severity on stress among parents of children with ASD: the moderating role of coping styles. Journal of Child and Family Studies, 19, 516-524.
Miodrag, N. & Hodapp, R.M. (2010). Chronic stress and health among parents of children with intellectual and developmental disabilities. Current Opinion in Psychiatry, 23(5), 407-411.
Myers, R.E., Winton, A.S.W., Lancioni, G.E., & Singh, N.N. (2014). Mindfulness meditation in developmental disabilities. In N.N. Singh (Ed.), Psychology of Meditation (pp. 209-240). New York: Nova.
Neece, C.L. (2014). Mindfulness-based stress reduction for parents of young children with developmental delays: implications for parental mental health and child behavior problems. Journal of Applied Research in Intellectual Disabilities, 27, 174-186.
Osborne, L.A., McHugh, L., Saunders, J., & Reed, P (2008). Parenting stress reduces the effectiveness of early teaching interventions for autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 1092-1103.
Singer, G.H.S., Ethridge, B.L., & Aldana, S.L. (2007). Primary and secondary effects of parenting stress and stress management interventions for parents of children with developmental disabilities: a meta-analysis. Developmental Disabilities Research Reviews, 13, 357-369.