Autism and Sleep: Understanding Insomnia in Adults with Autism Spectrum Disorder

Background:  Little research has examined insomnia in adults with autism spectrum disorder (ASD). Insomnia symptoms include difficulty falling or staying asleep, early morning awakenings, sleep dissatisfaction, and distressed or impaired daytime functioning from sleep disturbance (American Psychiatric Association, 2013). Insomnia is associated with significantly lower quality of life (LeBlanc et al., 2007), greater risk for accidents (Léger et al., 2002), and high rates of psychiatric comorbidities (Morin & Jarrin, 2013). Children with ASD are prone to insomnia (Sivertsen et al., 2012; Souders et al., 2009), particularly difficulties with sleep initiation and sleep continuity (Richdale, 1999). Adults with ASD also likely experience insomnia (Tani et al., 2003); however, this line of research is still in its infancy. 

Objectives:  The present study examines the prevalence of insomnia in young adults with ASD using the Insomnia Severity Index (ISI). A secondary goal is to explore perpetuating factors of insomnia. 

Methods:  Nineteen adult participants, ages 18-29, with an ASD diagnosis, have been enrolled in a community-based intervention targeting social, cognitive and vocational domains. At least 15-25 additional participants will enroll by April 2016. Participants and their parents/caregivers complete a comprehensive assessment including sleep functioning. Participants complete the ISI (Morin et al., 2011), a widely used measure of insomnia with well-established reliability and validity. The ISI assesses severity of insomnia as well as satisfaction with sleep pattern, effect of sleep on daytime and social functioning, and concern about current sleep. A score of ≥10 indicates insomnia (86% sensitivity; 88% specificity) with 4 severity categories: 0-9 (none); 10-14 (mild); 15-21 (moderate); and, 22-28 (severe). Parents/caregivers complete the ISI reporting on participant sleep.

Results:  Preliminary findings reveal participant (n=19) ratings on the ISI ranged from 0 (none) to 19 (moderate insomnia). Parent/caregiver (n=19) ratings ranged from 0 (none) to 27 (severe insomnia). Table 1 indicates how many participants exceeded the clinical cutoff for insomnia and the severity of their insomnia. Table 2 characterizes the type of insomnia (i.e., early, middle, late) and the related severity. Participant and parent report on the ISI demonstrated a small to medium positive association, r=.42, p=.07. Qualitative data indicate participants most commonly stay in bed and use electronics inside their bedroom when they cannot sleep. To compensate for poor sleep, participants most commonly sleep late and take naps. 

Conclusions:  We are aware of no previous studies using the ISI in adults with ASD. By participant report, >20% are above threshold for insomnia. By parent/caregiver report, >50% are above threshold. More research is needed to better understand how to best assess insomnia in ASD populations including how to maximize informant report. It is also important to further explore perpetuating factors of insomnia in this population (i.e., factors maintaining or exacerbating insomnia), as these are treatment targets for CBT for Insomnia, the frontline treatment. Improving the detection of insomnia in adults with ASD is an important yet largely unexplored area that could have a meaningful impact on research and clinical practice.