Overcoming Barriers to Intervention in Behaviorally-Based Treatments for Sleep Disorders

Background: The development of effective and sustainable interventions for behavioral sleep disorders among individuals with ASD is critical.  Research suggests the prevalence of sleep problems among the ASD population may reach 83%.  Studies show numerous consequences of disrupted sleep including behavioral dysregulation, irritability, impaired executive functioning, health problems, obesity, increased accidental injury, and long-term risk for psychiatric problems.  The assessment and treatment of sleep disorders among individuals with ASD requires a systems approach and is largely a caregiver training model.  Clinicians depend on caregivers residing with the child to provide accurate data for evidence-based assessment, to actively participate in treatment planning and implementation, and to follow procedures designed to promote sustainability beyond the termination of formal treatment.  Beyond the obstacles associated with training parents, there may be other individuals who contribute to treatment implementation but are not directly involved with the treating clinician.

Objectives: In this paper we describe the process of systems navigation in the treatment of sleep disorders with an emphasis on strategies to address obstacles related to evidence-based assessment (e.g., developing reliable data collection systems), intervention development (e.g., collaborative selection of evidence-based treatment approaches the caregiver finds feasible to implement), training (e.g., training caregivers to successfully train babysitters and extended family members), and movement from treatment to sustainability (e.g., managing regression).   

Methods: All data presented in the paper are collected from patients presenting to a Behavioral Sleep Clinic for individuals with ASD.  All patients treated in the Sleep Clinic first undergo a comprehensive assessment which includes parent completion of the Albany Sleep Problems Scale, submission of a minimum of 14 nights of baseline data on sleep habits and behavioral patterns, and a thorough developmental history.  Throughout intervention parents collect daily data on sleep and behavioral patterns and following the assessment, data are collected at scheduled intervals. 

Results: Data from families treated in the sleep clinic illustrate the ways in which barriers to treatment are identified and addressed.  Overall, results across patients support an increase in time spent sleeping independently and decrease in time spent engaging in problem behaviors at bedtime during active treatment, with gains sustained for up to three years post-intervention.  Examination of individual data patterns reveals periods in which bedtime problem behaviors increase and/or time spent in independent sleep decreases.  These data patterns are meaningful and relevant to treatment as they are indicative of barriers to intervention.  Examples from patients at various points in the treatment process will be used to illustrate such barriers, including barriers associated with data collection systems, treatment integrity challenges associated with inconsistent implementation across multiple caregivers, challenges associated with generalization to new locations, and management of regression at 36-month post-treatment follow-up.

Conclusions: Sustainable improvements in sleep habits require an approach to intervention that is guided by ongoing evidence-based services.  A highly collaborative approach in which the caregiver is well engaged in the development of data collection systems, intervention selection, and ongoing data review is crucial to success.  When such a model is adopted, sustainable change can be achieved.