# Measuring Sleep Problems in Children with Autism Spectrum Disorder

> **NIH NIH R01** · EMORY UNIVERSITY · 2022 · $561,768

## Abstract

Project Summary / Abstract.
This application, written in response to PAR-18-039, will advance outcome measurement for sleep problems in
children (age 3-12 years) with Autism Spectrum Disorder (ASD). Sleep problems (e.g., sleep disturbances and
sleep-related impairments) in children with ASD range from mild to severe and affect as many as 80% in this
age group (Katz et al, 2018).There is no accepted outcome measure for sleep problems in children with ASD.
The absence of a relevant, reliable and valid outcome measure is a barrier to rigorous testing of behavioral or
pharmacological treatments targeting sleep in this population. Using a mixed method design, this multisite,
transdisciplinary project will build a new parent rating for sleep disturbances and related impairments in
children with ASD. The study is guided by methods described in Patient Reported Outcome Measures
(www.Fda.Gov/Cder/Guidance, 2009). This monograph compels investigators to include the patient population
in measure development. Given the age range of this study and likelihood of cognitive or language delays in
children with ASD, we rely on parents as primary informants.
We have an outstanding team of investigators and consultants with expertise in measure development and
sleep problems in ASD. In Year 1, up to six focus groups with parents will explore the onset and behavioral
manifestations of sleep problems in children with ASD. The focus group material will be reviewed and coded to
generate a bank of items (Bearss et al. 2016). These items will be reviewed for clarity and reading level by
parents and an expert panel. In Year 2, the bank of items (version 1 of ASD-Sleep Questionnaire; ASDSQ) will
be placed on a secure website to collect parent-reported data on sleep disturbances and related impairments
in 1200 children with ASD. Items will be scored 0-3 (none, mild, moderate or severe). Factor analysis and item
response theory will be applied to establish the factor structure and prune the item pool toward the final version
(Scahill et al. in press). In Year 3 and early Year 4, an in-person clinical assessment of 135 children with ASD
(age 3-12 years) will be conducted to collect reliability and validity data on the final ASDSQ version. A
subsample of children will be invited to return for test-retest on ASDSQ, 2 weeks and 4 weeks later. In Year 4,
data from the clinical assessment will be used to evaluate convergent validity, divergent validity and test-retest
reliability of the ASDSQ. Also in Year 3 and early Year 4, we will collect five consecutive nights of actigraphy
data in a total of 75 children with ASD (age 3 to 12) to evaluate sleep efficiency (percentage of time sleeping
divided by total time in bed with lights off). Actigraphy-measured sleep efficiency (ASE) will be used to conduct
exploratory analyses comparing ASDSQ scores in children with impaired ASE values (poor sleepers) to those
with acceptable ASE values (good sleepers) (Goldman et al. 2009; Moore et al. ...

## Key facts

- **NIH application ID:** 10450794
- **Project number:** 5R01HD099480-04
- **Recipient organization:** EMORY UNIVERSITY
- **Principal Investigator:** Michael C Edwards
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $561,768
- **Award type:** 5
- **Project period:** 2019-09-13 → 2024-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10450794

## Citation

> US National Institutes of Health, RePORTER application 10450794, Measuring Sleep Problems in Children with Autism Spectrum Disorder (5R01HD099480-04). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10450794. Licensed CC0.

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