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Taking Sleep Difficulties Seriously in
Children With Neurodevelopmental
Disorders and ASD
Catherine Lord, PhD
In this month’s issue of Pediatrics, the
large-scale epidemiological study by
Reynolds et al
1
finds that close to one
half of 2- to 5-year-old children with
autism spectrum disorder (ASD) or
a neurodevelopmental disorder (NDD)
with some autistic features have
significant sleep difficulties. In addition,
.1 in 4 children with other NDDs or
delays, as well as otherwise healthy
children, also have sleep problems.
1,2
These sleep difficulties have significant
negative consequences, such as
exacerbating the social communication
deficits in ASD and increasing repetitive
and restrictive behaviors.
3
They
contribute to behaviors such as
aggression and self-injury
4
and often
make life more difficult for the entire
family. Pediatricians and nurse
practitioners in primary care and more
specialized health care providers such
as developmental-behavioral
pediatricians, child neurologists,
psychologists, behavior analysts, and
social workers often, but not always,
hear from caregivers about these sleep
difficulties. Yet, on the basis of the
data presented here and elsewhere,
whatever is being done currently is not
working.
5
The good news is that the sleep
difficulties experienced by children
with ASD and other NDDs are not
different from those of typical children,
and they can be treated in ways
that do not, in most cases, require
extraordinary medical intervention.
However, in ASD and other NDDs there
are a greater number of different kinds
of common sleep problems within an
individual child, and a greater number
of factors likely contribute to these
difficulties within the child and family.
1
This means that simple interventions
proposed without regard for the
specific needs of the child and family
are less likely to be effective.
6,7
Multiple
interventions for different aspects of
sleep (whether creating successful
bedtime routines, getting the child to
actually sleep, or minimizing night
waking and middle-of-the-night
cosleeping), and in some cases relevant
gastrointestinal or respiratory issues,
may have to occur simultaneously.
1
So, what can be done within the context
of busy clinical practices, particularly
when health providers have many
other responsibilities, and when
reimbursement levels for sleep
counseling can be low? Researchers
in a recent Delphi Behavioral Health
Group review proposed 131
recommendations about sleep, 84 of
which were judged to be relevant to 4
groups of children with different NDDs
or delays, and none of which were
judged to be of low importance.
8
Published studies describe effective
behavioral interventions for improving
sleep onset and decreasing night
waking as taking from 5 to 15 weeks
with 30-minute sessions of parental
training.
9–11
Thus, although the bulk of
the actual work is done by caregivers,
these interventions take time to design
and monitor. Caregivers must identify
the behaviors they need to address in
their children and themselves, consider
Department of Psychiatry and Biobehavioral Sciences, David
Geffen School of Medicine, University of California, Los
Angeles, Los Angeles, California
Opinions expressed in these commentaries are
those of the author and not necessarily those of the
American Academy of Pediatrics or its Committees.
DOI: https://doi.org/10.1542/peds.2018-2629
Accepted for publication Dec 3, 2018
Address correspondence to Catherine Lord, PhD,
Department of Psychiatry and Biobehavioral
Sciences, David Geffen School of Medicine at UCLA,
Jane and Terry Semel Institute for Neuroscience and
Human Behavior, 760 Westwood Plaza, Los Angeles,
CA 90095. E-mail: clord@mednet.ucla.edu
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online,
1098-4275).
Copyright © 2019 by the American Academy of
Pediatrics
FINANCIAL DISCLOSURE: The author has indicated
she has no financial relationships relevant to this
article to disclose.
FUNDING: Supported by R01 HD081199 and SFARI
1336363.
POTENTIAL CONFLICT OF INTEREST: Dr Lord has
received royalties for diagnostic instruments that
were used in this study; royalties were donated to
a not-for-profit agency.
COMPANION PAPER: A companion to this article can
be found online at www.pediatrics.org/cgi/doi/10.
1542/peds.2018-0492.
To cite: Lord C. Taking Sleep Difficulties Seriously
in Children With Neurodevelopmental Disorders
and ASD. Pediatrics. 2019;143(3) :e20182629
PEDIATRICS Volume 143, number 3, March 2019:e20182629 COMMENTARY
by guest on August 27, 2020www.aappublications.org/newsDownloaded from
what they are capable of doing within
the family environment and when
they can do this, and be helped to
regroup and try new strategies if first
attempts are not successful.
Again, the good news is that there are
a variety of approaches that can be
used with the resources available
in different health settings and
communities. Individual and group
caregiver–oriented programs have
been shown to have similar results
12
;
there is great hope for newly
modified e-health programs that are
specifically developed for children
with NDDs (eg, Better Nights,
Better Days for Children with
Neurodevelopmental Disorders
8
).
Successful behavioral programs
include bedtime fading, teaching
healthy sleep practices, and
increasing a child’s physical activity
during the day.
7,11,13
The point is that
someone (whether the primary care
physician, nurse practitioner,
psychologist, or social worker) needs
to ask the family about sleep to make
sure that difficulties are not going
unattended. There also needs to be
follow-up, such as making weekly
appointments for several months to
monitor and provide guidance to
a family, running a sleep group for
families of preschoolers with some
additional time for the parents of
children with NDDs, or supervising
participation in an e-health online
program.
In addition, numerous studies have
now shown that melatonin improves
sleep initiation and duration for many
children.
5,14
However, that is not
enough, as is indicated by the number
of families in the current study whose
children were already taking
melatonin and continued to have
significant sleep problems.
1
Thus, it is
recommended that families try
behavioral programs before trials
with melatonin. Other medications
have had less consistent results.
14,15
Particularly for younger children
(age #5 years) with mild obstructive
sleep apnea, adenotonsillectomies
may also be effective.
16–18
Overall, the charge is for pediatricians
and health care providers who see
children with ASD or other NDDs to
make sure that sleep is discussed
with families and, if there are
difficulties, to move beyond brief
advice to either carrying out
systematic interventions themselves
or referring families to get
appropriate help. In most cases, this
help does not have to come from
sleep experts, but does require
dedicated time and effort using the
now-growing base of evidence about
effective interventions.
ACKNOWLEDGMENTS
Thanks to Dr Susan Hyman for her
quick and thoughtful comments and
to Marcella Sanchez for the kind help
with references.
ABBREVIATIONS
ASD: autism spectrum disorder
NDD: neurodevelopmental
disorder
REFERENCES
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Sleep problems in 2- to 5-year-olds with
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PEDIATRICS Volume 143, number 3, March 2019 3
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originally published online February 11, 2019; Pediatrics Catherine Lord
Disorders and ASD
Taking Sleep Difficulties Seriously in Children With Neurodevelopmental
Services
Updated Information &
018-2629
http://pediatrics.aappublications.org/content/early/2019/02/07/peds.2
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originally published online February 11, 2019; Pediatrics Catherine Lord
Disorders and ASD
Taking Sleep Difficulties Seriously in Children With Neurodevelopmental
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