Experience of Sleep for Families of Young Adults With Autism Spectrum Disorder

Method

Design

In this phenomenological study, we investigated the experience of sleep for families of young adults with autism spectrum disorder (YA-ASD) through semistructured family interviews (Moustakas, 1994). Because sleep problems often persist from early childhood, we targeted families with YA-ASD to discuss and understand their experiences with sleep over time. This study received institutional review board approval.

Participants

Participants were recruited through social media postings, emails, and flyers distributed at local schools and therapy centers known to the first author (Nicole Halliwell). Interested families contacted the first author, who followed up by phone or email to discuss study-related information, determine eligibility, and obtain verbal consent. Families met inclusion criteria if they had a YA-ASD age 15 to 21 yr living at home and members of the family other than the YA-ASD were able to verbally participate in the interview process in English. The inclusion of 15- to 17-yr-olds as young adults reflects the expanding awareness of the need to begin focusing on the transition to adulthood for this population at a younger age. Families with children diagnosed with developmental disabilities other than ASD were excluded. Family composition was self-identified, and that composition was used for interviews to understand the experience of sleep as a co-constructed family occupation.

Six eligible families participated: 4 two-parent households and 2 single-parent households. Only 1 family included an adult sibling living in the home. All YA-ASD in this study were limited verbally and unable to contribute to the interview. Relevant demographic information is presented in Tables 1 and 2.

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Table 1.

Demographic Information for Parents, Adults, and Children in the Household

Family No.	Gender	Age, yr	Race	Employment Status	Marital Status	Education Level	Annual Household Income, $
1 a	Female	40–49	White	Full time	Separated	Graduate	>65,000
2 a	Male	40–49	White	Full time	Married	Bachelor’s	>65,000
2 a	Female	40–49	White	Part time	Married	Graduate
2	Male	20–29	White	Student	Single	Some college
2	Male	19	White	n/a
2	Male	14	White	n/a
2	Female	14	White	n/a
2	Male	9	White	n/a
3 a	Female	50–59	Other	Part time	Divorced	<High school	<25,000
3	Male	20–29	Other	Full time	Single	Bachelor’s
4 a	Female	40–49	Hispanic	Full time	Married	Some college	25,000–44,999
4 a	Male	40–49	Hispanic	Full time	Married	High school
4	Male	20–29	Hispanic	Full time	Married	Associate’s
5 a	Male	50–59	White	Full time	Married	Graduate	>65,000
5 a	Female	50–59	White	Full time	Married	Graduate
5 a	Male	20–29	White	Student	Single	Bachelor’s
6 a	Male	60–69	White	Full time	Married	Graduate	<65,000
6 a	Female	50–49	Hispanic	Full time	Married	Graduate

Note. n/a = not applicable.

^a

Family interview participant.

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Table 2.

Demographic Information for Young Adults With Autism Spectrum Disorder in Household

Family No.	Gender	Age, yr	Race	Communication Level	Comorbidities
1	Male	18	White	Partially verbal	Anxiety disorder
1	Female	16	White	Partially verbal	Anxiety disorder
2	Male	17	White	Partially verbal	Intellectual disability
3	Male	19	Other	Nonverbal	Attention deficit disorder, Epilepsy/seizure disorder, learning disability
4	Male	16	Hispanic	Nonverbal	None
5	Male	16	White	Partially verbal	Anxiety disorder, learning disability
6	Male	21	White	Nonverbal	Intellectual disability

Procedure

The first author conducted 60- to 90-min interviews of the families in their homes (Figure 1). The interviews were recorded, transcribed verbatim, and deidentified before analysis. Interviews were conducted until saturation of the data, or hearing similar core experiences across families, was achieved (Moustakas, 1994). Interviewing 6 families is consistent with previous phenomenological studies that have used family interviews (Bessette Gorlin et al., 2016; DeGrace, 2004; Suarez et al., 2014).

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Figure 1.

Semistructured interview questions.

Results

This study revealed five emotional themes: (1) endlessness, (2) attempts to manage, (3) difficulty, (4) persistence, and (5) the need to restructure.

Discussion

To our knowledge, this is the first phenomenological study to examine the sleep experiences of families raising a YA-ASD. The verbatim representations of the five themes, when combined, become a powerful summary of the essence of this experience: “We’re never done. We tried everything. It’s difficult, so difficult. Because it’s not going to change. So we gotta change our life for him.”

As families navigated the occupation of sleep, they felt that their responsibility toward their YA-ASD was never ending and, despite managing over time, the impact on the families continued to be extremely difficult. Although the families felt the sleep experience could be improved, they appeared to accept the fact that sleep challenges would never fully resolve. Therefore, they relinquished their sleep preferences and patterns to meet the needs of the YA-ASD. These findings are congruent with those of studies that have examined everyday life for families raising children with autism, which identified four broad themes: (1) pervasiveness of ASD; (2) feeling overwhelmed, stressed, frustrated, and anxious; (3) structuring life around ASD; and (4) feelings of judgment, exclusion, and isolation (Bessette Gorlin et al., 2016; DeGrace, 2004; Hoogsteen & Woodgate, 2013; Kirkpatrick et al., 2019; Ludlow et al., 2012; Nicholas et al., 2016; Swinth et al., 2015). The similarity of these themes supports the established research literature describing the pervasive effect of ASD on the family and shows that ASD affects the occupation of sleep.

Despite differences in family composition and socioeconomic level, the experiences of the families in this study surrounding sleep were similar. Every YA-ASD demonstrated difficulty with the occupation of sleeping, including falling asleep, staying asleep, and engaging in various disruptive nighttime activities. To improve sleep, each family spent time and energy exploring myriad tools and strategies, seeking professional help (including from occupational therapy practitioners), and continually working to accommodate the needs of the YA-ASD. This persistent family effort often led to substantial experiences of occupational imbalance, which raises concerns for family well-being. This persistence resonates with existing family research emphasizing the toll that seeking services has on families raising a child with ASD (Hodgetts et al., 2014).

During analyses, the experience of constantly being needed, or co-occupation for sleep, elicited discussions about the similarities between parenting a YA-ASD and parenting an infant. The sleep disruption for parents of typically developing infants, although it prompts an occupational imbalance, is temporary (Creti et al., 2017). As children develop, the need for caregiving and co-occupation decreases, but this is not the experience of families raising YA-ASD (Bessette Gorlin et al., 2016; DeGrace, 2004; Hoogsteen & Woodgate, 2013; Ludlow et al., 2012; Nicholas et al., 2016; Suarez et al., 2014; Swinth et al., 2015). In contrast, this study revealed that families continue to support the sleep patterns of a YA-ASD and thus are co-occupied, limiting occupational engagement and threatening the health and well-being of all family members.

The American Academy of Neurology recently published evidence-supported practice guidelines for the treatment of sleep disturbances in children and adolescents with ASD. They recommended four approaches: (1) addressing coexisting medical conditions, (2) implementing behavioral strategies, (3) using melatonin, and (4) exploring complementary alternative medicine (Buckley et al., 2020). The results of this study indicate that these strategies and other environmental modifications that are conventionally recommended to support sleep (e.g., good sleep hygiene, melatonin) may not adequately help YA-ASD and their families.

Limitations and Future Research

Future studies might benefit from a larger sample size of YA-ASD participants, families with greater socioeconomic or ethnic diversity, YA-ASD with increased communicative participation in the interview process, or the use of a mixed-methods design to incorporate an objective sleep measure. Of note, despite vast distribution of recruitment materials across multiple platforms, all families who elected to participate were known to the first author. We believe this phenomenon is a function of the inherent intimacy surrounding the topic of sleep to families raising YA-ASD and the trust required to openly share these experiences in an in-person interview. This research demonstrates the need for further studies designed to demonstrate the effectiveness of occupational therapy providers’ interventions and strategies to support sleep for families raising children with ASD.

Implications for Occupational Therapy Practice

Research using qualitative methodology both adds value to a body of literature and informs practice by focusing on the values and opinions of the participants, being client centered while “deepening practitioners’ understanding, and by enhancing capacity for empathy and therapeutic use of self” (Tomlin & Swinth, 2015, p. 2). The lack of evidence-based interventions supporting people with ASD also reveals a considerable area of growth for research and warrants further investigation to identify helpful strategies for improving sleep for this population and then to use those strategies in research to build the evidence in support of the effective implementation of sleep interventions across disciplines. The families in this study reported an overwhelming appreciation for the time we took to understand their sleep experiences, which reinforced the notion of sleep as an overwhelming experience that often is not given adequate attention by health professionals.

This study has implications for occupational therapy practice because it

Conclusion

This study provides insight into the ways family life is transformed by and revolves around the needs of the YA-ASD. Our investigation unveiled the fact that challenges persist even during sleep, further confirming the pervasive influence of ASD on family life. The results suggest that families have little opportunity for restoration or reprieve and, more important, reveal a notable disconnect between the standard recommendations from health professionals to support sleep for this population and their real-world efficacy.