Experience of Sleep: Families of Young Adults With Autism Spectrum Disorder (ASD)

Sleep is a vital occupation supporting health and well-being for all persons across the lifespan. For families, sleep difficulties have been found to significantly impact the daily lives of both the child and their family. Children with autism spectrum disorders (ASD) experience a number of difficulties related to their diagnoses one of which is getting adequate restful sleep. Recently, quantitative research has revealed that children with ASD often experience difficulties with sleep due to the nature of the disorder which can negatively impact quality of life for both the child and family but a qualitative in depth understanding of family’s experiences surrounding sleep is lacking. This study aims to examine the experience of sleep for families of children with ASD using a phenomenological approach via in-depth in person interviewing. the purpose of this study is to investigate the experiences of families of children with ASD surrounding sleep which, once revealed, may inform our understanding and further research of the nuances of sleep and potentially help to shape interventions that not only support the child with ASD, but also the family. The piloted semi-structured interview will be conducted with up to 15 families with a young adult child with ASD (age 15-21) lasting a duration of up to 90 minutes. Recorded interviews were transcribed, de-identified, and analyzed by a team of experienced qualitative researchers in the traditions of Moustakas (1994) to elucidate the meaning of the experience of sleep for participants. The results of this study unveiled five distinct themes which, when combined through verbatim quotations, construct the essence of the experience: “We’re never done. We managed over time [but] its difficult, so difficult …because it’s not going to change. So we gotta change our life for him.” These findings are congruent with studies examining everyday life for families raising children with autism: 1) pervasiveness of ASD, 2) feeling overwhelmed/stressed/frustrated, 3) structuring life around ASD, and 4) feelings of judgement and isolation (Bessette Gorlin et. al., 2016; Hoogsteen & Woodgate, 2013; Joosten & Safe, 2014; Ludlow et. al., 2012; Nicholas et. al., 2016; Strunk et. al., 2014; Suarez et. al., 2014; Swinth et.al., 2015; Werner DeGrace, 2004). The similarity of these findings both supports the established research literature describing the encompassing pervasiveness resulting from raising a child with ASD and extends the recognition of this experience for families to include the occupation of sleep. Although families that participated in the study were similar because they were parenting a young adult with autism with limited verbal communication skills, there existed great variety between family make up, socioeconomic, and educational levels. Despite these differences, the experiences surrounding engagement in the occupation of sleep were the same across families and remarkably similar to sleep experiences for parents of a new born or very young child requiring parents to be continuously co-occupied to support their child’s sleep. This raises questions for the profession of occupational therapy while revealing a considerable need for additional studies exploring this issue to help providers develop appropriately supportive, evidence-based interventions. The results of this study reveal a significant opportunity for the occupational therapy profession to develop and provide family centered, occupation based, targeted interventions to support sleep for both children with ASD and their families and invest in further research regarding sleep for children with ASD to inform practice and help improve outcomes for children and their families.

References

Bessette Gorlin, J., McAlpine, C. P., Garwick, A., & Wieling, E. (2016). Severe childhood autism: The family lived experience. Journal of Pediatric Nursing, 31(6), 580-597. doi:10.1016/j.pedn.2016.09.002

Delahaye, J., Kovacs, E., Sikora, D., Hall, T. A., Orlich, F., Clemons, T. E., . . . Kuhlthau, K. (2014). The relationship between Health-Related Quality of Life and sleep problems in children with autism spectrum disorders. Research in Autism Spectrum Disorders, 8(3), 292-303. doi:http://dx.doi.org/10.1016/j.rasd.2013.12.015

Moustakas, C. E. (1994). Phenomenological research methods. Thousand Oaks, CA, US: Sage Publications, Inc.

Werner DeGrace, B. (2004). The everyday occupation of families with children with autism. American Journal of Occupational Therapy, 58(5), 543-550. doi:10.5014/ajot.58.5.543