A Practice Pathway for the Identification, Evaluation, and Management of Insomnia in Children and Adolescents With Autism Spectrum Disorders

Abstract

OBJECTIVE: This report describes the development of a practice pathway for the identification, evaluation, and management of insomnia in children and adolescents who have autism spectrum disorders (ASDs). METHODS:The Sleep Committee of the Autism Treatment Network (ATN) developed a practice pathway, based on expert consensus, to capture best practices for an overarching approach to insomnia by a general pediatrician, primary care provider, or autism medical specialist, including identification, evaluation, and management. A field test at 4 ATN sites was used to evaluate the pathway. In addition, a systematic literature review and grading of evidence provided data regarding treatments of insomnia in children who have neurodevelopmental disabilities. RESULTS:The literature review revealed that current treatments for insomnia in children who have ASD show promise for behavioral/ educational interventions and melatonin trials. However, there is a paucity of evidence, supporting the need for additional research. Consensus among the ATN sleep medicine committee experts included: (1) all children who have ASD should be screened for insomnia; (2) screening should be done for potential contributing factors, including other medical problems; (3) the need for therapeutic intervention should be determined; (4) therapeutic interventions should begin with parent education in the use of behavioral approaches as a first-line approach; (5) pharmacologic therapy may be indicated in certain situations; and (6) there should be follow-up after any intervention to evaluate effectiveness and tolerance of the therapy. Field testing of the practice pathway by autism medical specialists allowed for refinement of the practice pathway. CONCLUSIONS:The insomnia practice pathway may help health care providers to identify and manage insomnia symptoms in children and adolescents who have ASD. It may also provide a framework to evaluate the impact of contributing factors on insomnia and to test the effectiveness of nonpharmacologic and pharmacologic treatment strategies for the nighttime symptoms and daytime functioning and quality of life in ASD. Pediatrics 2012;130:S106-S124

Sleep Difficulties and Medications in Children With Autism Spectrum Disorders: A Registry Study

“…The ATN has developed a practice pathway for insomnia that includes attention to diagnosis as well as treatment and follow-up, although it will require comprehensive testing to determine its usefulness in clinical practice. 11 Second, in light of the high prevalence of reporting sleep disturbance not otherwise specified as a diagnosis, clinicians may not have been familiar with the criteria for other ICD-9 sleep diagnoses. Finally, the cutoff score of 41 used on the CSHQ may be too low for use in ASD, especially in younger children.…”

“…However, given parents'multiple concerns regarding their children's behavior, or their belief that poor sleep is "part of autism," parents may not express concerns about sleep to their children's primary care provider. 11 Even when sleep concerns are raised by parents to primary care providers, additional treatment challenges remain. Causes of sleep difficulties in children with ASD are often complex and multifactorial.…”

“…Facing the challenge of dealing with sleep concerns raised by a parent, providers may turn to recommending medications despite the limited evidence base for medication use in this population. 11 We reviewed data from the ATN registry to compare the prevalence of parent-reported concerns about sleep captured on questionnaires with diagnoses of sleep disorders captured by clinicians. We also wished to explore medication-prescribing patterns.…”

A Pilot Study of Autism-Specific Care Plans During Hospital Admission

“…These interventions tend to be untested for effectiveness. [20][21][22] Our intervention is novel in that it both increases physician knowledge and is personalized to each patient.…”

The Autism Speaks Autism Treatment Network Registry Data: Opportunities for Investigators

“…Registry data identifying sleep problems, especially insomnia, led to work on effective treatments for these problems. 20,21 More important, registries may answer questions that a clinical trial could never address. Wellcontrolled clinical trials can address very specific treatment strategies.…”