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Taking Sleep Difficulties Seriously in Children With Neurodevelopmental Disorders and ASD

Authors:
Taking Sleep Difculties Seriously in
Children With Neurodevelopmental
Disorders and ASD
Catherine Lord, PhD
In this months issue of Pediatrics, the
large-scale epidemiological study by
Reynolds et al
1
nds 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
signicant sleep difculties. 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 difculties have signicant
negative consequences, such as
exacerbating the social communication
decits 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 difcult 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
difculties. 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
difculties 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
difculties within the child and family.
1
This means that simple interventions
proposed without regard for the
specic 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.
911
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 nancial 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-prot 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 Difculties 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 rst
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
caregiveroriented programs have
been shown to have similar results
12
;
there is great hope for newly
modied e-health programs that are
specically 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 childs 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 difculties 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
signicant 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.
1618
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
difculties, 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
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Disorders and ASD
Taking Sleep Difficulties Seriously in Children With Neurodevelopmental
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... This has led to the suggestion that sleep disturbances may exacerbate the severity of core and secondary ASD symptoms [24,25]. Thus, behavioral and pharmacological treatments for sleep disturbances in ASD may alleviate multiple symptoms [19]. Indeed, one recent study has reported that treatment with prolonged release of melatonin improved total sleep time and reduced hyperactivity in children with ASD [20]. ...
Article
Full-text available
Background Sleep disturbances are frequently reported in children with autism spectrum disorder (ASD) and are associated with the severity of co-occurring symptoms. This study’s aim was to examine the extent of healthcare utilization and clinical outcomes associated with sleep disturbances in children with ASD. Study design A retrospective, cross-sectional study of 541 children with ASD from the Azrieli National Center for Autism and Neurodevelopment Research (ANCAN) whose parents completed the Children’s Sleep Habits Questionnaire (CSHQ). Children with a total CSHQ score ≥ 48 were defined as having sleep disturbances. Sociodemographic characteristics, ASD diagnostic measures, chronic co-occurring conditions, medication usage, hospitalizations, visits to the emergency room (ER), and visits to specialists were compared in ASD children with and without sleep disturbances. Multivariate logistic regression models were then used to assess the independent association of sleep disturbances with clinical characteristics and healthcare utilization. Results Of the 541 children with ASD, 257 (47.5%) had sleep disturbances. Children with sleep disturbances exhibited higher rates of multiple (≥ 3) co-occurring conditions (19.1% vs. 12.7%; p = 0.0414) and prescribed medications (45.5% vs. 32.7%; p = 0.0031) than other children. Finally, ASD children with sleep disturbances were 1.72 and 2.71 times more likely to visit the ER and be hospitalized than their counterparts (aOR = 1.72; 99%CI = 1.01–2.95; and aOR = 2.71; 99%CI = 1.10–6.67, respectively). Conclusions Our findings suggest that sleep disturbances are associated with greater healthcare utilization among children with ASD. Further studies could examine whether treating sleep disturbances in children with ASD yields additional clinical benefits beyond improvements in sleep.
... In the context of caring for a child with a neurodevelopmental condition, a parent's relative priority for treating sleep disturbance is likely to depend on other medical symptoms or behavioural problems that the child is experiencing. As the first line intervention strategy for insomnia problems involves a parent-implemented sleep hygiene/behavioural intervention [58], parents should be consulted on their capacity to use behavioural strategies to support their child's sleep and the most appropriate timing of this intervention for the family [59]. Parents indicated that support for implementing behavioural strategies was the most frequently endorsed priority to support sleep in children with Angelman syndrome (27%) [60]. ...
Article
Full-text available
Purpose of Review This review draws upon the authors’ practical experience of assessing sleep in children with neurodevelopmental conditions alongside empirical evidence of recommendations for clinicians and researchers to support assessment of sleep problems and strategies to promote healthy sleep in children with specific neurodevelopmental conditions. These include communication about sleep, mental health/behavioural considerations, pain, sensory profile, epilepsy, melatonin secretion profiles, sleep-disordered breathing and restless leg syndrome. Recent Findings This review has a particular focus on children with autism spectrum disorder, attention-deficit and hyperactivity disorder, Down syndrome, Smith-Magenis syndrome, Angelman syndrome, William’s syndrome and cerebral palsy. Summary Sleep disturbance varies in severity between neurodevelopmental conditions and the need for individualised assessment is emphasised. The impact of children’s poor sleep on parents is highlighted as a particular concern. A checklist of recommendations and example resources for clinicians to enquire about sleep in children with neurodevelopmental conditions has been included in a summary table.
... Autism spectrum disorder (ASD) is a complex, multifactorial neurodevelopmental disorder characterized by poor socialization, slow development of communication skills, deficient cognitive development, and recurrent instances of repetitive behavior [1]. Autism is a remarkably heterogeneous disorder, and, further, there is a considerable interindividual variation in symptoms presentation [2,3]. Among the many comorbidities associated with autism are seizures, tactile hypersensitivity, frequent gastrointestinal disturbances, and psychiatric issues such as anxiety and depression [4]. ...
Article
Full-text available
PurposeAmong the commonly encountered symptoms of autism are sleep disorders, which exist for reasons that are not only linked to the disorder but also, have a bidirectional relationship with the condition. Thus, autism promotes sleep disorders, but once established, the altered sleep patterns worsen both the core features of the disease as well as the conditions associated with it. The current review is aimed at exploring the interaction between sleep and autism.MethodsA thorough search of published literature on ‘Sleep’ AND ‘Autism’ was conducted using major databases including: Scopus, Web of Science, PubMed/MEDLINE, Embase, EBSCO, PsychINFO, Global Health database and the Google Scholar search engine. All the significant findings highlighting their interaction and the management aspects are documented and discussed in detail.ResultsA sleep diary and parental questionnaires may be a good starting point for determining the extent of sleep disruption, though they are less accurate than objective assessment through polysomnography or actigraphy. Successful symptom reduction has been shown with a number of the better-known hypnotics. Melatonin appears to be useful in controlling sleep problems in autism, according to a large body of evidence.Conclusion Based on the available evidence, various management approaches are available to reduce the severity of some of the sleep symptoms associated with autism. This includes sleep hygiene, behavioral modifications, pharmacological treatments, melatonin supplementation, and other sleep-inducing medications.
... Autism spectrum disorder (ASD) is a complex, multifactorial neurodevelopmental disorder characterized by poor socialization, slow development of communication skills, deficient cognitive development, and recurrent instances of repetitive behavior [1]. Autism is a remarkably heterogeneous disorder, and, further, there is a considerable interindividual variation in symptoms presentation [2,3]. Among the many comorbidities associated with autism are seizures, 1 3 tactile hypersensitivity, frequent gastrointestinal disturbances, and psychiatric issues such as anxiety and depression [4]. ...
Preprint
Purpose: Among the commonly encountered symptoms of autism are sleep disorders, which exist for reasons that are not only linked to the disorder but also, have a bidirectional relationship with the condition. Thus, autism promotes sleep disorders, but once established, the altered sleep patterns worsen both the core features of the disease as well as the conditions associated with it. The current review is aimed at exploring the interaction between sleep and autism. Methods: A thorough search of published literature on ‘Sleep’ AND ‘Autism’ was conducted using major databases including: Scopus, Web of Science, PubMed/MEDLINE, Embase, EBSCO, PsychINFO, Global Health database and the Google Scholar search engine. All the significant findings highlighting their interaction and the management aspects are documented and discussed in detail. Results: A sleep diary and parental questionnaires may be a good starting point for determining the extent of sleep disruption, though they are less accurate than objective assessment through polysomnography or actigraphy. Successful symptom reduction has been shown with a number of the better-known hypnotics. Melatonin appears to be useful in controlling sleep problems in autism, according to a large body of evidence. Conclusion: Based on the available evidence, various management approaches are available to reduce the severity of some of the sleep symptoms associated with autism. This includes sleep hygiene, behavioral modifications, pharmacological treatments, melatonin supplementation, and other sleep-inducing medications.
... Shorter sleep duration has also been associated with social communication impairment and increased restricted and repetitive behaviors (RRBs) (Veatch et al., 2017). This has led to the suggestion that insomnia may exacerbate the severity of core and secondary ASD symptoms and that treating insomnia may help reduce these symptoms (Lord, 2019). Indeed, one recent study has reported that treatment with PR melatonin improved total sleep time and consequently reduced hyperactivity in children with ASD (Schroder et al., 2019). ...
Preprint
Full-text available
Insomnia is frequently reported in children with autism spectrum disorder (ASD) and is associated with the severity of hyperactivity, irritability, sensory sensitivities, and related symptoms. The aim of this study was to examine the extent of healthcare utilization associated with insomnia in children with ASD. We conducted a retrospective, cross–sectional study of 541 children with ASD registered at the National Autism Database of Israel (NADI). Parents of all children completed the Children′s Sleep Habits Questionnaire (CSHQ) and insomnia was defined as a total CSHQ score ≥48. We compared sociodemographic characteristics, ASD diagnostic measures, chronic comorbidities, medication usage, hospitalizations, visits to the emergency room (ER), and visits to specialists between ASD children with and without insomnia. Finally, we assessed the independent association of insomnia with clinical characteristics and healthcare utilization using multivariate logistic regression models. Of the 541 children with ASD, 257 (47.5%) had insomnia. Children with insomnia compared to children without insomnia exhibited higher rates of comorbidities within the symptoms, signs, and ill–defined conditions (ICD 9[780:789]) category (aOR=1.70; 95%CI=1.04 – 2.77; p=0.033) and were prescribed more medications for chronic comorbidities (aOR=1.47; 95%CI=1.01 – 2.15; p=0.046). Finally, ASD children with insomnia were 1.75 and 2.82 times more likely to visit the ER and be hospitalized than their counterparts (aOR=1.75; 95%CI=1.17 – 2.62; p=0.007 and aOR=2.82; 95%CI=1.43 – 5.56; p=0.003, respectively). Our findings demonstrate that insomnia is associated with greater healthcare utilization among children with ASD. Thus, treating insomnia in children with ASD may have a broad clinical impact beyond specific improvements in sleep disturbances.
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Introduction. Here we describe the interim results of the Program to Support Child Sleep from the Occupational Therapy Perspective (Programa de Acompañamiento al Sueño en la Infancia desde Terapia Ocupacional, PASITO) for children with neurodevelopmental disorders (NDDs) aged 3-10 years with insomnia, conducted between June 2020 and September 2021. Population and methods. Pre- and post-intervention quasi-experiment in an intervention group and a control group using the Sleep Habits Questionnaire (SHQ) and the Consensus Sleep Diary (CSD). Results. A total of 22 children with NDDs participated, 8 in the control group. The overall SHQ score for the intervention group improved (p < 0.001) from 54.9 (SD: 5.5) to 48.4 (SD: 4.5) and moved closer to the reference range of 42.6 (SD: 4.9). The CSD showed an increased sleep duration, earlier sleep onset, and fewer night wakings. Conclusion. These interim favorable results demonstrate that the PASITO may be a possible intervention to manage sleep problems in children with NDDs.
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Introduction: Sleep disturbance is commonly observed in children with autism spectrum disorders (ASD). Disturbed sleep may exacerbate the core symptoms of ASD. Behavioural interventions and supplemental melatonin medication are traditionally used to improve sleep quality, but poor sustainability of behavioural intervention effects and use of other medications that metabolise melatonin may degrade the effectiveness of these interventions. However, several studies have suggested that physical activity may provide an effective intervention for treating sleep disturbance in typically developing children. Thus, we designed a study to examine whether such an intervention is also effective in children with ASD. We present a protocol (4 December 2017) for a jogging intervention with a parallel and two-group randomised controlled trial design using objective actigraphic assessment and 6-sulfatoxymelatonin measurement to determine whether a 12-week physical activity intervention elicits changes in sleep quality or melatonin levels. Methods and analysis: All eligible participants will be randomly allocated to either a jogging intervention group or a control group receiving standard care. Changes in sleep quality will be monitored through actigraphic assessment and parental sleep logs. All participants will also be instructed to collect a 24-hour urine sample. 6-sulfatoxymelatonin, a creatinine-adjusted morning urinary melatonin representative of the participant's melatonin levels, will be measured from the sample. All assessments will be carried out before the intervention (T1), immediately after the 12-week intervention or regular treatment (T2), 6 weeks after the intervention (T3) and 12 weeks after the intervention (T4) to examine the sustainability of the intervention effects. The first enrolment began in February 2018. Ethics and dissemination: Ethical approval was obtained through the Human Research Ethics Committee, Education University of Hong Kong. The results of this trial will be submitted for publication in peer-reviewed journals. Trial registration number: NCT03348982.
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Background and purpose Sleep disturbances in autism spectrum disorder (ASD) are common and may impair daytime functioning as well as add to parental burden. In this well characterized sample of young children with ASD and disruptive behaviors, we examine the association of age and IQ in sleep disturbances using the Child Sleep Habits Questionnaire modified for ASD (CSHQ-ASD). We also test whether children with poor sleep have greater daytime behavioral problems than those with better sleep. Finally, we examine whether parental stress is higher in children with greater disruptive behaviors and sleep disturbances. Participants and methods One hundred and seventy-seven children with complete data out of 180 (mean age 4.7) with ASD participated in a randomized clinical trial. Parents completed the CSHQ-ASD and several other measures at study enrollment. The sample was divided into “poor sleepers” (upper quartile on the total score of the CSHQ-ASD) and “good sleepers” (lower quartile) for comparisons. Analyses were conducted to evaluate group differences on age, IQ, daytime disruptive behavior, social disability and parental stress. Results The two groups of young children with ASD, good sleepers versus poor sleepers, were not different on age or cognitive level. Children in the poor sleeping group had significantly higher daytime behavioral problems including irritability, hyperactivity, social withdrawal and stereotypical behaviors. Parents in this group reported significantly higher levels of stress. Conclusions The finding of no age difference between good and poor sleepers in young children with ASD and disruptive behaviors suggests that sleep problems are unlikely to resolve as might be expected in typically developing children. Likewise, the good and poor sleepers did not significantly differ in IQ. These findings add strong support for the need to screen for sleep disturbances in all children with ASD, regardless of age and cognitive level. Poor sleepers exhibited significantly greater daytime behavioral problems and parents of children in this group reported significantly higher levels of stress. Above and beyond the co-occurring disruptive behavior, poor sleep quality appears to pose substantial additive burden on child and parents.