“[Having a child diagnosed with autism is] very stressful. I don’t have time for my husband, and I don’t have time for me! …I’m always thinking that what happened to my son is my fault. I’m trying to do my best! He needs me!” —Anonymous parent
Does the above statement ring a bell? Are there days where you feel as if you’re on a seesaw, teetering between feeling able to handle the stress and feeling choked with the weight of anxiety?
Raising a child diagnosed with autism can be a unique and beautiful experience. However, despite the perfect family picture others may see, there may be times where you feel your life is shattering into many pieces.
You are not alone
According to current research, parents of children who have been diagnosed with autism undergo the greatest degrees of stress compared to parents of children who have been diagnosed with other disorders or parents of typically developing children (Harper, Dyches, Harper, Roper, & South, 2013; Hayes & Watson, 2013; Kuhaneck, Madonna, Novak, & Pearson, 2015; McStay, Dissanayake, Scheeren, & Koot, 2014). Common stressors that are experienced by parents of children with autism include the delay in the diagnosis of autism, the financial burdens of treatment, and marital and family quality. It is also common for parents of children with autism to have concerns for the future of their child regarding their independence and social stigmatization experienced by their child (Altiere & von Kluge, 2009; Frye, 2015; Lee et al., 2012; Rivard, Terroux, Parent-boursier, & Mercier, 2014; Bitsika, Sharpley, & Bell, 2013; Harper et al., 2013).
In light of this research, Karen and Emily decided to focus their Master of Occupational Therapy Capstone Project on stress experienced by parents of children with autism and how occupational therapy can address this issue. Their main concerns for parents of children with autism is their well-being and quality of life, as stress can exacerbate problematic psychological health issues, such as higher rates of depression and/or anxiety (Bitsika et al., 2013; Conner & White, 2014; Lee et al., 2012).
In order to take a deeper look into the stress that parents of children with autism face on a day-to-day basis, as well as to assess whether the proper resources or services are being offered to assist them in coping with the stress, the two occupational therapy students created an online survey that allowed them to gain insight into the lives of parents of children with autism. The survey integrated questions from the Autism Parenting Stress Index (APSI) to gauge parents’ subjective stress levels, depending on various aspects that may come with autism. Open-ended questions allowed parents to be honest about how the stress of having a child with autism affected their personal social life and how they currently cope (if they do) with stress. Additionally, they were asked which services (such as occupational therapy) or parental supports were provided to help them cope.
The below figure depicts the averages of participants’ responses to the APSI questions:
As described by the “What Causes your Stress?” chart, parents reported their top five stressors are thoughts of their child’s future of living independently, thoughts of their child’s future of being accepted by others, their child’s social development, their child’s ability to communicate, and their child’s tantrums/meltdowns.
Below are some of the authentic responses received from parents who participated in the study:
1. How has the autism diagnosis of your child impacted your own social life with your spouse, family, and/or friends?
- “We don’t go to other people’s homes because we would never get to sit down, he wants to touch EVERYTHING!”
- “My spouse and I rarely go on dates, trips, etc. because we feel guilty asking for help and feel we should rush back home, so we don’t really relax and enjoy ourselves.”
- “I honestly do not have a social life at all. My time is dedicated to my daughter’s school and therapies.”
- “As for friends, some of them do not understand how autism works and the impact it can have on our household. Some of our family members just choose to stay away because they are afraid of her and they believe that there’s nothing wrong with her and that is she misbehaving to get attention.”
- “My spouse and I rarely go on dates, trips, etc. because we feel guilty asking for help and feel we should rush back home, so we don’t really relax and enjoy ourselves.”
- “I’m always thinking that what happened to my son [is] my fault. I had a very stressful pregnancy [with] high blood pressure and Diabetes type 2. I’m always thinking “What’s going to happen to him?” because [if] I don’t’ manage my own condition, I’m gonna die sooner!”
2.“What are ways you currently cope with your stress of having a child on the autism spectrum? Are they effective?”
- “I cry and try to listen to music, [but] it doesn’t really help.”
- “I have become his playmate, because the children in the neighborhood are not very kind. It doesn’t work.”
- “I really don’t have any ways because I don’t even have the time to get away or figure out how to release the stress.”
- “Talking with other parents helps remind you that you are not alone.”
- “Exercising, walking out my stress…”
- “I have to have a day to myself. My husband will take her out while I go out by myself.”
- “Find mommy and daddy time.”
- “I will also listen to music or try to meditate.”
- “Take the good with the bad…just deal with it.”
- “Best advice is to take things day by day, celebrate the small progresses, don’t dwell on the challenges. See them as such and find a way to face the challenge to conquer or cope with it.”
The stress of raising a child diagnosed with autism can surely shatter a parent’s social and personal life into pieces. However, may you find assurance knowing that you are not alone. Life can be pieced back together- with the help of certain supports and services.
Occupational therapy is a service for individuals with disabilities to challenge physical, mental, or social limitations and to enhance the quality of life. Distinct from other disciplines, occupational therapists are licensed healthcare professionals who are trained to view any individual, from a school-aged child with autism to an emotionally-overwhelmed parent, through a holistic pair of glasses; thus, any aspect of life that seems to be crumbling to pieces is the focus of an occupational therapist- whether it be physical, emotional, spiritual, or social. Through environmental or task adaptation, sensory integration, and self-coping mechanisms, children diagnosed with autism can learn to interact with others and their environment.
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As occupational therapists’ focus is the improvement of well-being, quality of life, and functionality of children with autism, their ability to focus on the children’s parents could prove to be essential in improving family functioning. Whether it be helping parents find coping mechanisms that fit their family lifestyle, creating a weekly routine that schedules “spouse-time” or “alone time” while meeting their child’s needs, or searching for local parental support groups, occupational therapists can help parents find balance in their life. Also, they can teach parents how to explain their child’s diagnosis to family/friends or help them understand their child’s specific sensory needs.
Through this teamwork with an occupational therapist, parents can learn how to “piece the puzzle” back together.
Ask your child’s occupational therapist or seek the help of an occupational therapist for advice on parental coping mechanisms and individualized stress management strategies.
References:
Altiere, M. J., & von Kluge, S. (2009). Family functioning and coping behaviors in parents of children with autism. Journal of Child and Family Studies, 18(1), 83-92. http://dx.doi.org.resource.adu.edu/10.1007/s10826-008-9209-y
Bitsika, V., Sharpley, C. F., & Bell, R. (2013). The buffering effect of resilience upon stress, anxiety and depression in parents of a child with an autism spectrum disorder. Journal of Developmental and Physical Disabilities, 25(5), 533-543. doi:10.1007/s10882-013-9333-5
Conner, C. M., & White, S. W. (2014). Stress in mothers of children with autism: Trait mindfulness as a protective factor. Research in Autism Spectrum Disorders, 8(6), 617-624. http://dx.doi.org.resource.adu.edu/10.1016/j.rasd.2014.02.001
Frye, L. (2015). Autism spectrum disorder: Nursing implications. Journal of Pediatric Health Care, 1-11. http://dx.doi:10.1016/j.pedhc.2015.10.012
Harper, A., Dyches, T. T., Harper, J., Roper, S. O., & South, M. (2013). Respite care, marital quality, and stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(11), 2604-2616. http://dx.doi.org.resource.adu.edu/10.1007/s10803-013-1812-0
Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629-642. http://dx.doi.org.resource.adu.edu/10.1007/s10803-012-1604-y
Kuhaneck, H. M., Madonna, S., Novak, A., & Pearson, E. (2015). Effectiveness of interventions for children with autism spectrum disorder and their parents: A systematic review of family outcomes. The American Journal of Occupational Therapy, 69(5), 6905180040p1-6905180040p14. http://dx.doi.org/10.5014/ajot.2015.017855
Lee, G. K., Lopata, C., Volker, M. A., Thomeer, M. L., Toomey, J. A., Rodgers, J. D., . . . McDonald, C. A. (2012). Stress, resiliency factors, quality of life among caregivers of children with high functioning autism spectrum disorders (HFASDs). The Australian Journal of Rehabilitation Counselling, 18(1), 25-36. http://dx.doi.org.resource.adu.edu/10.1017/jrc.2012.5
McStay, R. L., Dissanayake, C., Scheeren, A., & Koot, H. M. (2014). Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism: The International Journal of Research and Practice, 18(5), 502-510. doi:10.1177/1362361313485163
Rivard, M., Terroux, A., Parent-boursier, C., & Mercier, C. (2014). Determinants of stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(7), 1609-1620. http://dx.doi.org.resource.adu.edu/10.1007/s10803-013-2028-z
Silva, L. M. T., & Schalock, M. (2012). Autism Parenting Stress Index (APSI). Measurement Instrument Database for the Social Science. Retrieved from www.midss.ie
This article was featured in Issue 74 – Every Voice Matters
