Sleep: A Guide for Parents

Abstract

This guide has been developed to further understanding of the nature of sleep problems in children with intellectual disability and what can be done to improve sleep. Part one describes common sleep problems in individuals with intellectual disability and how these sleep problems are assessed. Part two gives a brief overview of sleep problems in specific genetic syndromes. Part three outlines some strategies which may help to reduce or improve sleep problems.

Full text

Sleep
A Guide for Parents

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Contents
Introduction 4
Part One 4
What is sleep? 4
What is a ‘sleep problem’? 5
How common are sleep problems? 8
What impact do sleep problems have? 12
How are sleep problems assessed? 13
Part Two 16
Sleep in genetic syndromes 16
Part Three 19
Intervention for sleep problems in individuals with intellectual disability 19
Sleep hygiene 19
What should I do when my child just will not go to sleep? 21
What can I do if I cannot leave my child to cry? 21
What can I do if my child needs me to be there in order for them to sleep? 22
What should I do if the settling problem comes back? 23
What can I do if my child has problems with settling AND night waking? 23
My child wakes in the night or early in the morning but does not wake me…
What should I do? 23
My child wakes in the night or early in the morning and wakes EVERYONE….
What can we do? 24
What should I do if my child naps for long periods of the day? 24
What can I do if these strategies don’t work or my child has a sleep problem
which is not listed here? 25
Resources 26
Glossary 27
References 28

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Introduction
This guide has been developed to help parents
understand the nature of sleep problems in
children with intellectual disability and what can
be done to improve sleep. Part one describes
common sleep problems in individuals with
intellectual disability and how these sleep
problems are assessed. Part two gives a brief
overview of sleep problems in specific genetic
syndromes. Part three outlines some strategies
which may help to reduce or improve sleep
problems. A glossary of key terms (highlighted in
blue) and list of useful resources are provided at
the end of this guide.
Part One
What is sleep?
Sleep, rather than just being a time when the
brain ‘switches off’, is actually an active process
essential for survival. Both the brain and body
are active during sleep and are involved in vital
processes and functions, ranging from resisting
infection through to consolidating memories.
In children, sleep is important for growth, with
certain stages of sleep associated with the release
of growth hormones1. Poor sleep can result in
irritability the next day, as well as poor memory,
low mood and impaired concentration in both
children2 and adults3. Equally, good quality sleep
is important for ensuring good physical and
mental health.
Sleep is made up of four different stages, which
cycle several times throughout the night (see Box
1). Each cycle ends with a ‘brief arousal’, which
may only last a few seconds. These brief arousals
are not usually remembered the next day.
1. Lightest
sleep (NREM)
2. Light sleep
(NREM)
3. Deep sleep
(NREM)
4. REM sleep
5. Brief
arousal
Box 1. The stages
of sleep

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Sleep begins with light non-rapid eye movement
(NREM) sleep (Stage 1 in the diagram overleaf).
During lightest sleep, we feel as though we are
awake but we are drifting off to sleep. After this,
NREM sleep becomes progressively deeper and
when in the deepest stage (sometimes called
‘slow wave sleep’) it is difficult for others to wake
us up. After that we enter a brief period of rapid
eye movement (REM) sleep. During this stage
of sleep, our breathing and heart rate tend to be
less regular than in NREM sleep and we may
experience dreaming. A brief arousal then occurs
before we go through gradually deepening
stages of NREM sleep and then more REM sleep,
as the cycle is repeated. The length of time spent
in each stage changes as the cycles continue.
The amount of sleep an individual requires to
feel refreshed varies between different children
(regardless of their stage of development) but
also changes with age. The American Academy
of Sleep Medicine4 has suggested the following
guidelines for typically developing children. There
is significant natural variation in the amount of
sleep that healthy, typically developing children
require. Nonetheless, these guidelines are also
likely to be relevant to children with intellectual
disability:
Age
Amount of sleep
recommended per 24
hour period
4-12 months 12-16 hours
(including naps)
1-2 years 11-14 hours
(including naps)
3-5 years 10-13 hours
(including naps)
6-12 years 9-12 hours
13-18 years 8-10 hours
What is a ‘sleep problem’?
A good night’s sleep does not necessarily mean
uninterrupted sleep for the recommended
number of hours. In individuals with and without
an intellectual disability, it is normal to wake
up a few times in the night. This only becomes
problematic if the individual is unable to go back
to sleep. In children and adults with intellectual
disability this may also have an effect on other
members of the family. See page 12 on “What
impact do sleep problems have?” for more
information about the impact of sleep problems
on other members of the family.
Individual differences are also important to
consider because some people feel refreshed after
only five or six hours of sleep, whereas others feel
tired even after ten. Importantly, even though the
amount of sleep one child needs may differ to the
amount of sleep another child needs, each child’s
own need for sleep seems to remain constant5.
For example, someone who needs eight hours
of sleep is likely to need about eight hours every
night in order to feel refreshed.
How sleepy or awake an individual feels
varies within the 24 hour period, according to
the internal ‘body clock’ (circadian rhythm).
Generally, we feel sleepy during the earliest
hours of the morning and most alert in the early
evening1. Levels of sleepiness also fluctuate
during the day, so that most people will feel
tired in the early afternoon too1. However, there
are individual differences. Some people may
prefer to be awake later into the evening and
sleep in later the following morning (‘night owls’).
‘Morning larks’, on the other hand, tend to wake
up earlier than others and become tired earlier in
the evening6. It is important to remember these
individual differences when thinking about what
constitutes a sleep ‘problem’. Remember that if
your child’s sleep pattern is affecting him/her or
you/your family, then it is worth thinking about in
order to identify some possible solutions.

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Sleep problems can be divided into several
categories:
zInsomnia
This refers to problems such as having
difficulty settling to sleep, waking early in the
morning or during the night and not being
able to return to sleep. This occurs despite the
individual having adequate opportunity for
sleep (e.g. spending ten hours in bed). Some
researchers and clinicians would also include
sleeping for an adequate amount of time but
not feeling refreshed in this category of sleep
problem. Unlike people who feel refreshed
after just a short sleep, those who experience
insomnia find that these difficulties impact
their ability to function day to day. The
majority of this guide will focus on describing
insomnia and some strategies which may be
helpful in reducing it.
zExcessive daytime sleepiness
This is where an individual lacks energy and
feels sleepy throughout the day, despite
apparently sleeping adequately the night
before. The individual feels either less alert
or sleepier than would be expected from
the normal population. This is not the same
as ‘laziness’. Sometimes individuals who
experience Excessive daytime sleepiness
do actually fall asleep in the day. Younger
children may be over-active or restless and
struggle to concentrate when experiencing
Excessive Daytime Sleepiness.
zParasomnias
Parasomnias refer to unusual movements
or behaviours which can happen at any
stage of NREM or REM sleep. Examples
include sleep-walking, nightmares and sleep
paralysis.
Other types of sleep problems include sleep-
related movement disorders (such as nocturnal
head banging), sleep-related breathing disorders
(such as sleep apnoea) and circadian rhythm
sleep-wake disorders.
Sleep-related breathing disorders are more
common in certain genetic syndromes associated
with intellectual disability (particularly those with
characteristic cranial-facial differences, see Part
Two on page 16) than in the general population.
When we sleep, the muscles in our upper airways
relax slightly and breathing becomes more
difficult than when we are awake. This is normal
but can be more problematic for some people
and they will experience lots of brief arousals due
to these breathing difficulties. The most common
sleep-related breathing disorder in children
with intellectual disability is obstructive sleep
apnoea (OSA)7. Individuals with OSA experience
brief periods during sleep where the airway is
obstructed by this relaxation of the muscles for
10 seconds or more, causing them to wake.
These brief obstructions interrupt the sleep cycle
described in the “Stages of sleep” diagram in Box
1 on page 4, and so although the wakings are not
usually remembered, individuals who experience
OSA do not feel refreshed even after long periods
of time in bed8.

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Box 2. A pattern of bedtime and morning wake time characteristic of circadian rhythm
sleep-wake disorders, compared to a typical bedtime and morning wake times, for a 14
year old child.
Circadian rhythm sleep-wake disorders refer to a group of sleep problems linked to the internal ‘body
clock’ (see ‘Differences in internal body clock’ on page 10). For some individuals, this means that sleep
patterns typical for their age are either advanced or delayed by several hours (see Box 2 below). For
example, if an individual has advanced sleep-wake disorder they will fall asleep much earlier than
most other people. This means their sleep needs are likely to be met before other people naturally
wake up1. In delayed sleep-wake disorder, individuals fall asleep much later than other people.
Chronotherapy9 is often a last-resort treatment for delayed sleep phase circadian rhythm disorder
because it involves keeping an individual awake later and later in the day. The idea is that by shifting
an individual’s bedtime to progressively later (for example by three hours a day), the sleep schedule
will eventually advance to the desired sleep time. However, this is obviously practically very difficult to
stick to, and so other strategies are recommended first (see Part Three on page 19).
16:00
18:00 20:00 22:00 00:00 02:00 04:00 06:00 08:00 10:00 12:00
14:00
Advanced bed time = 19:00
Advanced wake time = 04:00
Delayed bed time = 02:00
Delayed wake time = 11:00
Typical bed time = 21:00
Typical wake time = 07:00

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How common are sleep problems?
In the general population, fewer than 3 out of 10 children are estimated to experience sleep
problems10. This figure is even greater (about 8 out of 1011) among children with an intellectual
disability, whose sleep problems also tend to be more severe and persistent. Very few research studies
have looked at why this is the case but there are certain aspects of health and behaviour that are
known to be more common in children with intellectual disability. The following section presents
some ideas about how these characteristics could be associated with a sleep problem in children with
intellectual disability (Box 3).
Box 3. Pathways to problems with sleep in children with intellectual disability, explained
below.
Physical
health
problem
Sleep problems in children with intellectual disability
Psychiatric
vulnerability
Differences
in internal
body clock
Differences
in sensory
processing
Parent
response to
waking
Sleep-related
breathing
difficulties
Fear of dark
Change
in release
of sleep
hormone
Distraction/
confusion/
distress
around
bedtime
Learned
association
between
child waking
and parent
response
- locked
together
in a cycle
of mutual
reinforcement
Fear of being
separated
from parent
ADHD
Medication
effects
Pain/
discomfort
Incontinence
Unable
to find
comfortable
sleeping
position
Seizures

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Physical health problems
Children with intellectual disability often
experience physical health problems associated
with pain and discomfort. Being in pain and/
or uncomfortable can interfere with sleep,
particularly if the health problem restricts clear
breathing as in obstructive sleep apnoea. Asthma
can also disrupt sleep because of narrowing
airways and frequent coughing and wheezing12.
Many children with sleep problems are also
reported to have eczema, suggesting they may
be kept awake because of the itching/burning
sensations13. Other health problems (such as
epilepsy, severe allergies, muscular problems,
gastro-oesophageal reflux, dental problems,
middle ear infections) may also prevent the
individual from finding a sleeping position
which is comfortable14 and may be treated with
medications which also affect sleep (for example,
anti-epilepsy medication15).
Given the high rate of both sleep and physical
health problems in individuals with intellectual
disability, it is very important to seek medical
advice if your child/the child you care for is
experiencing reduced or disturbed sleep. This
should help to rule out any underlying physical
cause. Further information about assessing
whether the individual may be experiencing pain
can be found in the “How are sleep problems
assessed?” on page 13 and in Cerebra’s Pain
guide, which is listed in the Resources section on
page 26.
Psychiatric vulnerability
Mental health difficulties such as anxiety and
depression are common in individuals with
intellectual disability and may be linked to sleep
problems. Although everyone experiences worry
and low mood from time to time, when these
emotions occur persistently they may start to
impact everyday life and sleep. Many children
who experience anxiety have difficulty settling
to sleep and wake frequently during the night16,
possibly due to fears around being alone or the
dark. These problems can become more severe
in children with intellectual disability who may
not be able to communicate their anxiety in the
same way as children without an intellectual
disability. For some children, waking in the night
to find things different to the way they were
when they went to sleep can trigger anxiety.
For example, if a child falls asleep with a parent
in their bed and a certain song playing, if they
wake later in the night and the parent and music
are not still there this can be anxiety provoking.
This may make it difficult for them to get back to
sleep again. For further information on anxiety
in individuals with intellectual disability, read
Cerebra’s Anxiety Guide, which is referenced in the
Resources section on page 26.
Additionally, many children with intellectual
disability also have Attention Deficit Hyperactivity
Disorder (ADHD). ADHD is associated with
insomnia, excessive daytime sleepiness and
parasomnias17.
Some medications prescribed for anxiety,
depression and ADHD may influence sleep. For
example, ADHD may be treated with stimulant
drugs which can cause insomnia or hyperactivity
close to bedtime17 whereas some antidepressants
have been linked to sleepwalking and other
parasomnias1.
Differences in sensory processing
Some children with intellectual disability also
experience differences in the way they process
sensory input (e.g. flavours, smells, sights,
sounds, textures) compared to children of the
same age without an intellectual disability. This
can sometimes make them more sensitive to
certain sensations, which may lead to distraction,
distress, fear or confusion around bedtime and
sleeping18. For example, some children may be
irritated by the texture of a label in their pyjamas.
Removing unwanted sensory input and taking
extra care over developing a bedtime routine and
other aspects of sleep hygiene (see Part Three on
page 19) may be helpful for children who have
sensory difficulties.

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Differences in internal body clock
Individuals with intellectual disability may also
have differences in the internal ‘body clock’
which controls sleep and wakefulness (circadian
rhythm). This internal body clock is guided by the
individual’s environment which indicates time,
such as meal times, social contact and the 24
hour light-dark cycle. Melatonin is a hormone
released by the brain to promote sleep in
response to decreasing light in the afternoon and
evening (see Box 4).
Box 4. The typical release pattern of melatonin.
Some children with intellectual disability may
be less sensitive to these indicators7 or may
experience them differently to children without
an intellectual disability – resulting in a sleep
pattern which may not conform to the typical 24
hour period. This may be a particular problem for
children who are born blind, because their internal
body clock cannot be guided by indicators from
the light-dark cycle. Instead they will need to
rely on other indicators to train their circadian
rhythm. In some genetic syndromes, notably
Smith-Magenis syndrome, the circadian rhythm
may be inverted19. This means that the hormone
which initiates sleep (melatonin) is released at
the ‘wrong’ time so that individuals are sleepy
in the day and alert during the night. For more
information on sleep difficulties in specific genetic
syndromes, see Part Two on page16 .
Parent response to waking
As in children without an intellectual disability,
sleep problems in children with intellectual
disability can also be influenced by parent
response to waking. Due to understandable
concern about their children’s welfare, all parents
may unintentionally reinforce the behaviours
their children show when they wake up. For
example, by allowing a crying child who has
woken in the night to come into their bed
(something the child may find rewarding i.e.
something they are likely to want to access
again) or providing them with long periods of
physical or verbal comfort. For children who
enjoy adult interaction, even being ‘told off’ for
waking up and making noise can be rewarding.
This means that the child learns an association
between crying when they wake and accessing
16:00 18:00
Melatonin Release
20:00 22:00 00:00 02:00
Time
04:00 06:00 08:00 10:00 12:00 14:00

11/36
the attention/comfort/reprimand again. This is
not a conscious process, and may initially occur
because children cannot (rather than will not) find
any other way to settle themselves back to sleep.
As a parent or carer of a child with an intellectual
disability you may be more concerned about
your child’s waking than other parents might
be, perhaps because of their associated health
problems or challenging behaviours and this
makes this problem more difficult than it is for a
typically developing child.
Although a child’s sleep problem may have
initially started because of one of the factors
listed above, it may be maintained by these
interactions with concerned parents which
unintentionally reinforce the behaviour shown
when waking. This means it is more likely to
continue. For example, if a child wakes up in the
middle of the night and cries out, resulting in their
parent waking, entering their room, providing
comfort and singing to them until they fall back
to sleep, the child is likely to associate their waking
with these rewarding parent behaviours. This is
called a learned association. This means that
over time the child associates waking with the
immediate soothing presence of the caregiver,
and so does not learn to re-settle themselves to
sleep.
Waking problems may also occur when children
do not learn to fall asleep independently. Often
children fall asleep whilst feeding, or in bed with
a certain caregiver – meaning they learn to
associate falling asleep with the presence of that
adult. If, during the brief arousal between sleep
cycles, they fully awaken and the adult is not
there, they may struggle to self-soothe (i.e. fall
back to sleep by themselves). Instead they may
cry out until their parent returns to settle them off
to sleep again. By responding to these cries, the
child’s behaviour after waking is unintentionally
reinforced by the parent’s presence and this
creates a learned association (that the adult
must be there for them to fall asleep).
This learning is a two-way process. On the child’s
part, if parent responses are not immediate, the
child may continue to cry and may start to show
other unwanted behaviours until the reinforcing
response is provided. Once the response is
provided, the child is more likely to show these
crying and unwanted behaviours when they
next wake because these behaviours are effective
in gaining the parent’s attention. This is not a
conscious process on the child’s behalf but an
unintended learned association.
For the parent, if the child’s crying becomes louder
and more distressed and if other unwanted
behaviours emerge, the parent may find this
increasingly difficult to ignore. Eventually, they
might go in to engage with the child. This may
be to comfort, reprimand, offer something or
remove something. Eventually, the child’s distress
and behaviour reduces and they return to sleep.
When the child returns to sleep, the parent is
also reinforced (by a sleeping quiet child!) and
therefore the next time child wakes and cries
out, the parent is more likely to go in to them.
Again, this is not a not a conscious process but an
unintended learned association.
Over time, these two cycles of reinforcement
can lock together making it challenging to break
the learned associations. This is the process of
mutual reinforcement, best explained in Box
5 on the next page, with child behaviour and
reinforcement in blue and parent behaviour and
reinforcement in purple.

12/36
Parenting a child with an intellectual disability
can be very challenging, and when parents’
own sleep is affected by their children’s sleeping
problems, it may be more likely that parents will
do whatever it takes to get their child to return
to sleep. However, it is important to consider
how your behaviour as a parent or caregiver
may be unintentionally reinforcing your child’s
sleep problem in order to put into practice the
intervention ideas suggested in Part Three on
page 19.
What impact do sleep problems
have?
Although the odd night of poor sleep may not
affect daily abilities, persistent sleep problems
can have a huge impact on individuals with and
without intellectual disability and their friends,
families, colleagues and carers. For all individuals,
lack of sleep is associated with problems with
mood, learning, memory and behaviour.
Child wakes up Crying/Challenging
Behaviour
Parent experiences
child’s behaviour as
aversive
Reward for the
child increasing the
likelihood of the child
showing the same
behaviour next time
they wake up
Parent engages
(Comfort/discipline
child)
Parent acts
Child’s behaviour stops Reward for the parent
Increased likelihood
that parent will
respond in this way
the next time the child
wakes and shows
these behaviours
Box 5. The mutual reinforcement process.

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Learning
Importantly, poor sleep affects motivation and
concentration20, which means that individuals
who are experiencing sleep problems may
make more errors at school/work, particularly on
repetitive tasks. This means that if your child is
struggling on ‘easier’ tasks at school (which are
often repeated until they are ready to move on to
harder tasks) it is worth speaking to their teacher,
who may be under the impression that they are
struggling because of their intellectual disability,
rather than the sleep issues21. Sleep is also vital to
a process called memory consolidation22, where
memories from the day (e.g. memory of what
is learned at school) are strengthened. If sleep
is disrupted these memories may not be stored
properly, making it harder for children to use what
they have already learned during the next day at
school.
Challenging behaviour
Poor sleep may also reduce an individual’s ability
to cope with changes in their routine. You may
notice that your child shows more challenging
behaviour (for example, self-injury, aggression,
destruction) when they have not slept well the
night before23. This is common in children with
intellectual disability and also in children and
adults of typical development! We are all more
irritable when we have not slept well and are
therefore more likely to show behaviours which
indicate that we would like certain tasks to end
or situations to change. Since individuals with
intellectual disability may have limited ways to
communicate their feelings and preferences,
challenging behaviour can be a very effective
way of indicating needs or desires (for example
for a task to be taken away). It is natural for
parents/carers/teachers to want to respond
quickly to the challenging behaviour, which
means that it is more likely to occur again the
next time they want a task to be removed. For
more information on mutual reinforcement of
challenging behaviour, see “Parent response to
waking” on page 10, and also Cerebra’s guide
on Self-injurious behaviour which is listed in the
Resources section on page 26.
Parents of children with intellectual disability
therefore have a lot to do: comforting children
with sleeping problems, acting as an advocate for
their child’s learning and health, and managing
challenging behaviour. Often parents and family
members experience a loss of sleep themselves,
which can make managing these aspects of
parenting more difficult and may even contribute
to low mood24 and impaired concentration. It
may feel as though your child’s sleep problem is
out of your control or that you do not have the
time/resources to invest in fixing it. However, after
thorough assessment, there are some simple
intervention strategies available in Part Three on
page 19 which can help to improve sleep.
How are sleep problems
assessed?
The previous sections have described some
of the different types of sleep problem and
possible factors which may contribute to their
development. Since sleep is clearly much more
complicated than just ‘switching your brain
off’, tailored intervention for each type of sleep
problem is very important. You may be tempted
now to skip straight to the end of this guide and
get started on fixing the problem! However,
it is really important to assess sleep problems
thoroughly before attempting any of the
intervention strategies described in Part Three on
page 19. This helps us to understand the likely
root of the sleep problem and the best way to
tackle it.
The first step in assessing an individual’s sleep
would be to complete a sleep diary (see Box 6),
and answer some questions about the individual’s
sleep habits, settling and waking behaviours.
This allows caregivers and professionals to see
how long the child sleeps for, what happens
when they wake (for example any challenging
behaviour) and the general pattern of waking.

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Box 6. An example sleep diary, used by Cerebra’s sleep practitioners. For more on the work of
Cerebra’s sleep service, see page 25.
However, sometimes parents are not exactly sure
when their child actually falls asleep (this may
be much later than when they are put to bed,
which could indicate a “settling to sleep” problem)
or what behaviour children show in their own
bedrooms after the lights have been turned
out. In these cases, some parents find using a
video camera in their child’s bedroom helpful.
This helps them to ensure that the child is safe,
and also to see what behaviours they do show
when they wake up. This may be particularly
useful for parents who suspect their child may be
experiencing parasomnias.
Live or video behavioural observation could also
be used to identify whether children may be
experiencing pain which could be affecting their
sleep. An important part of assessment of sleep
problems is ruling out any possible underlying
medical factors. Since we know that children
who are in pain or discomfort have more sleep
problems (see “Physical health problems” on
page 9), it may be that health difficulties are
preventing a good night’s sleep. Although some
children with intellectual disability may be able
to communicate verbally that they are in pain, in
others it may be more difficult to tell.
Box 7 outlines the Face, Legs, Activity, Crying and
Consolability (FLACC) Pain Scale – which any
parent or caregiver can use to look for non-verbal
indicators of pain in their child. You simply have
to watch your child for ten minutes and then
score them on each FLACC subscale. A score of
zero on each of the subscales refers to no pain-
related behaviour (e.g. face subscale includes ‘No
particular expression or smile’) and a maximum
score of two on each subscale refers to behaviours
which are indicative of high levels of pain (e.g.
face subscale includes ‘Frequent to constant
quivering chin, clenched jaw’). These scores are
added together to produce a total from zero to

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ten. A total score of zero indicates that this child
shows no or few behavioural indicators of pain,
while higher scores represent a greater number
of behavioural indicators of pain. For further
guidance on use of the FLACC, see Cerebra’s Pain
guide, which is listed in the Resources section on
page 26.
Box 7. The FLACC assessment of pain-related behaviour.
Where sleep-related breathing disorders
are suspected, polysomnography (PSG) is
recommended. This involves sleeping for at least
one night (preferably more) in a sleep laboratory.
The individual’s brain wave activity, leg, eye and
muscle movements, oxygen levels and breathing
effort are monitored alongside other specific
biological measurements whilst they sleep. From
these measurements, recommendations for
certain sleep problems can be made. However,
this approach relies on the assumption that
children are able to sleep in a sleep laboratory
whilst attached to various wires and monitors,
and also that this night’s sleep will be typical
for them despite all of the changes to their
environment.
Actigraphy studies are useful for investigating
whether circadian rhythm sleep-wake disorders
are suspected. In these studies, children wear an
actigraph (see Box 8), around either their wrist or
their ankle. This is a small device which measures
an individual’s activity levels and estimates sleep
onset, morning wake time and any night time
wakings shown in an actigram (see Box 8).
Actigraphy can be cross-referenced with parental
sleep diaries and gives a useful insight into what
parents may not be aware of in terms of their
children’s waking and nightime activity.
Difficult to console or
comfort
Reassured by occasional
touching, hugging or being
talked to, distactable
Content, relaxed
Consolability
Crying steadily,
screams or sobs,
frequent complaints
Moans or whimpers,
occasional complaint
No crying
(awake or asleep)
Cry
Arched, rigid or
jerking
Squirming, shifting
back and forth, tense
Lying quietly, normal
position moves easily
Activity
Kicking or legs
drawn up
Uneasy, restless,
tense
Normal position or
relaxed
Legs
Frequent to constant
quivering chin,
clenched jaw
Ocasional grimace or
frown, withdrawn,
disinterested
No particular
expression or smile
Face
Score TwoScore OneScore ZeroCategories
REFERENCE Merkel, S.I., Voepel-Lewis, T. Shayevitz, J.R.,
and Malviya, S. (1997). The FLACC: A behavioural scale for
scoring postoperative pain in young children.
Pediatric Nursing, 23(3), 293-297.
If a child is showing these behaviours, it doesn’t necessarily mean that they are in pain, as some of the behaviours measured by the
FLACC scale can happen for other reasons. However, parents are advised to follow up high scores with a professional.
Interpreting the Behaviour Score
Each category is scored on the 0-2 scale,
which results in a total score of 0-10 severe discomfort of pain or bothmild discomfort 7-10
4-6
0
1-3
moderate pain
relaxed and comfortable
Sometimes it is difficult to assess pain in children who are non-verbal. The FLACC Pain Scale is a system that can help parents and
professionals assess pain levels in children who have limited or no expressive communication. The diagram shows the categories for
scoring. Zero, one or two points are given to each of the five categories: Face, Legs, Activity, Cry and Consolability.
The FLACC Pain Scale

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Box 8. An actigram and the output it produces, taken from a study funded by Cerebra. The
light blue interval shows where the child is asleep and the black lines indicate activity. From
this and a sleep diary, researchers can identify the time the child went to sleep, any wakings
after sleep onset and the overall sleep efficiency (time spent asleep divided by time in bed).
Part Two
Sleep in genetic syndromes
As outlined in Part One, there are a variety of sleep
problems commonly experienced by children
with intellectual disability. Recent research funded
by Cerebra suggests that the cause of a child’s
intellectual disability can be an important factor
in contributing to the pattern of sleep problems
they may experience, though it is important to
recognise that these patterns are not inevitable for
all individuals with these syndromes. Therefore,
Part Two gives a brief overview of sleep problems
in some specific genetic syndromes, where
published research is available. These are listed in
alphabetic order.
Angelman syndrome
Angelman syndrome (AS) occurs when the
genetic material on chromosome 15 (inherited
from the mother) is missing or altered. The exact
prevalence of AS is unknown, but estimates
suggest that it occurs in between 1 in 10,000
and 1 in 40,000 people25. Sleep problems are
common, particularly early waking, night time
waking and difficulty settling to sleep26. Other
behaviours such as night time teeth grinding,
sleep walking, sleep-disordered breathing
and sleep paralysis are also reported27. Sleep
problems in AS may be linked to epilepsy, which
occurs very frequently in individuals with AS28.

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Cornelia de Lange syndrome
Cornelia de Lange syndrome (CdLS) is most
commonly caused by deletions to the NIPBL
gene, but can also be caused by changes to
other genes. It affects approximately 1 in 40,000
people. Around 50% of children with CdLS29 are
reported to experience sleep problems, usually
problems with falling asleep or waking in the
night. Daytime sleepiness and falling asleep in
the daytime are also common in children with
CdLS29, and sleep disordered breathing occurs
more in CdLS than in the general population30.
Gastro-oesophageal reflux and epilepsy also
occur frequently in CdLS, which may be linked
to the sleep problems (see Part One for further
explanation of the links between physical health
conditions and disrupted sleep).
Cri du Chat syndrome
Cri du Chat syndrome (CdC) occurs in 1 in
37,000 to 50,000 live births. It is caused by
a missing piece of genetic information on
chromosome 5. Sleep difficulties are reported in
50% of children with CdC, with problems falling
asleep and frequent night wakings the most
common31. A small percentage of children with
CdC also wake early and struggle to return to
sleep. Snoring is very common in CdC, as is
anxiety around going to sleep, meaning that
many children with CdC insist on a complicated
bedtime routine or ritual and need a security
object before going to sleep32.
Down syndrome
Down syndrome (DS) is a relatively common
genetic syndrome, occurring in 1 in 700 births17.
It is caused by trisomy 21 – a third copy of
the chromosome 21 (typically developing
individuals have one pair of each chromosome,
one inherited from their mother and one from
their father). This copy of the chromosome may
be full or incomplete. Sleep problems are
relatively common in DS, particularly difficulty
with settling to sleep and waking frequently in
the night33. Obstructive sleep apnoea is also
common in DS (affecting 31 – 100% of
children33), possibly due to the characteristic
craniofacial features of the syndrome17.
Fragile X syndrome
Fragile X syndrome (FXS) is a genetic syndrome
which results in changes to a specific protein
(FMRP). FXS occurs in around 1 in 2,500 to 5,000
males and 1 in 6,000 females, and around
half of individuals with FXS are reported to
experience significant sleep problems34. The most
commonly reported sleep problem in individuals
with FXS is difficulty settling to sleep, as well as
frequent night wakings. These night wakings
tend to reduce as individuals get older. For some
people with FXS, daytime sleepiness and restless
sleep are also problematic.
Kleefstra syndrome
Kleefstra syndrome (KS) is an extremely rare
genetic syndrome (prevalence estimated at 1 in
200,000) which is caused by a deletion of the
genetic material on chromosome 9. According to
very early research, sleep patterns seem to vary
in children with KS, but early waking and waking
in the night are common problems. A small
group of children with KS have sleep-related
breathing disorders.
Prader-Willi syndrome
Prader-Willi syndrome (PWS), which affects
1 in 20,000 to 1 in 25,000 live births, occurs
when information is missing on the copy
of chromosome 15 which is inherited from
the individual’s father. Sleeping problems are
relatively common in PWS35, particularly
excessive daytime sleepiness which continues
into adulthood36. This may be linked to sleep-
related breathing disorders, which are common
in PWS37. The REM stage of sleep is also believed
to be reduced in individuals with PWS.
Smith-Magenis syndrome
Smith-Magenis syndrome (SMS) is caused by a
deletion, or in some cases an alteration, of parts
of the genetic material on chromosome 17.
SMS occurs in roughly 1 in 15,000 to 25,000
live births38. Sleep problems are very common

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in SMS with 88% of individuals reported to
experience them39. In particular, difficulties with
settling, night and early waking and excessive
daytime sleepiness are noted. These sleep
difficulties have been linked to a change to the
normal sleep-wake patterns40 seen in individuals
with SMS – instead of releasing the hormone
melatonin at night, the amount of melatonin
naturally produced may peak during the day
so that individuals with SMS may feel tired at
different times to individuals without SMS. For this
reason, many children with SMS may have earlier
bedtimes than other children of the same age40,
and wake earlier.
Tuberous sclerosis complex
Tuberous sclerosis complex (TSC) is caused
by a change in one of two genes, located on
chromosomes 9 and 16. These changes can
result in various growths developing in different
areas of the body, including the eyes, brain and
skin. Some individuals are affected so mildly
that they do not know that they have TSC,
whilst others are more severely affected. It is
estimated that TSC occurs once in every 6,000
births41. Children and adults who are more
severely affected are reported to have more
sleep problems. Research into sleep in TSC is still
in its early stages but there is some evidence
that children with TSC have problems settling
and wake frequently in the night42. Individuals
with TSC may also wake early and experience
excessive daytime sleepiness42. Epilepsy is
particularly common in TSC (affecting up to 90%
of individuals at some point in their lifetime43),
which may be linked to the sleep problems.
Williams syndrome
Williams syndrome (WS) is caused by deletion
of many genes on the long arm of chromosome
7. The syndrome affects 1 in 7,500 individuals44
and although there is little research conducted
on sleep difficulties in WS, available studies
suggest that the rate of sleep disturbance is high45
including problems settling (such as bedtime
resistance and sleep anxiety45) and night waking.
Excessive daytime sleepiness has also been
reported in individuals with WS, even when they
appear to have had a good amount of sleep the
night before46. Many individuals with WS also
experience bed-wetting47.
As the above sections demonstrate, although
there are specific types of sleep problem
which may be associated with certain genetic
syndromes (such as very early morning waking
in Smith-Magenis syndrome), there are also lots
of similarities between syndromes. In most of the
syndromes (with the exception of Kleefstra and
Prader-Willi syndromes), for example, problems
with settling and frequent night waking are the
primary concern. This suggests that although
some sleep problems have specific causes within
each syndrome, others may have a shared cause
across syndromes. These shared causes may
include common health difficulties, cranial-facial
differences, sleep-related breathing disorders,
bedtime anxiety, a combination of these factors
or any other factor which makes children with
intellectual disability more likely to experience
a sleep problem (see “How common are sleep
problems?” on page 8).
If there are shared causes of sleep problems,
intervention strategies which target some of
these behaviours are likely to be effective for
children with different genetic syndromes who
are experiencing the same type of sleep problem.
Crucially, this means that though having a
child with a particular syndrome associated
with a specific sleep problem may put them at
greater risk for that problem; it’s still possible that
changing some of the other risk factors could
lead to vast improvements. Therefore careful
assessment of the sleep problem is vital before
attempting intervention strategies in Part Three.
This should involve some combination of the
steps outlined in Part One, taking into account
some of the common difficulties reported in your
child’s genetic syndrome.

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Part Three
Intervention for sleep problems
in individuals with intellectual
disability
There are two main types of intervention for
insomnia: behavioural and pharmacological
(medical). For some children, medical prescription
of melatonin, a naturally occurring hormone
which makes you feel tired, can help them get
to sleep faster and for longer, and reduce night
wakings48 but for others it is not so effective49.
Overall, parents tend to report that melatonin
helps their child to get to sleep, but not to stay
asleep50. Importantly, melatonin must be
used alongside other strategies to ensure that
conditions are appropriate to promote sleep.
For example, melatonin won’t be very effective
for a child who is drinking a coke and playing
video games at midnight, but it may help a child
who is able to be calmed in a dimly lit bedroom.
Melatonin is not licensed for children’s use in the
UK, but may be prescribed ‘off-label’ by your GP
alongside sleep hygiene and other strategies51.
For other sleep problems, such as obstructive
sleep apnoea, other approaches would be more
appropriate – for example Continuous Positive
Airway Pressure (CPAP), or surgery.
This guide focuses on a few key behavioural
intervention techniques, largely adapted from
a book by Mark Durand. This book is included
in the Resources section on page 26. These
interventions may improve sleep in individuals
with intellectual disability. Of course, there may be
other techniques that you may come across and
would like to try (e.g. chronotherapy, relaxation
techniques etc.) but these are beyond the scope
of this guide.
Before starting any of the intervention strategies
described in this section, it is important to take
into account the type of sleep disturbance
experienced by the individual. Keep a sleep
diary for at least two weeks prior to beginning
intervention (see the example diary provided
in Part One). Thorough assessment is needed
before starting any intervention and you may
wish to consult with a health professional who
knows your child before you begin. It is important
to ensure thorough assessment and treatment
of any painful physical health problems before
beginning any behavioural interventions as
pain may be causing or maintaining the sleep
problems (as discussed in Part One). Some
strategies are more appropriate for certain types
of sleep problem, while others can be used
(with some adaptations) for multiple problems.
Some are likely to be effective more quickly
than others, while others take longer but may
be ‘easier’. Choose whatever works for you, your
child and your family, and be prepared to trial
a few options. Above all, do not give up! It may
take some time but research shows that these
strategies can be effective52.
Sleep hygiene
Good sleep hygiene is important for good quality
sleep in all adults and children. Sleep hygiene
refers to good habits which help an individual to
get regular, good quality sleep53. You may have
tried some of these techniques before but don’t
skip this section! Some aspects of sleep hygiene
are likely to be more relevant to you and your
child than others but it is important to consider
the following list, regardless of the type of sleep
problem they are experiencing:
zRoutine
For many children (with and without an
intellectual disability), a 30-60 minute
bedtime routine can be a helpful way of
signalling that ‘play time’ has transitioned
into ‘sleep time’. This should be directed
by the parent, but can involve activities
that the child prefers and finds soothing.
For example, you may choose to include
a bath in the bedtime routine, but if your

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child finds water very stimulating this may
not be a helpful soothing activity. Common
steps in the routine might include changing
into pyjamas, brushing teeth, reading
bedtime stories. Ensure that you end the
routine with a phrase or action (e.g. a special
goodnight song) which indicates that it is
now time for sleep. Importantly, this must
be something that could be completed
again if the child wakes up in the night. You
may wish to complement the bedtime
with a visual schedule to show the child the
order of activities. Keep the order and timing
of the routine the same each night, and
avoid the temptation to extend the routine
to just one more story! One important
exception to this should be made for children
with Autism Spectrum Disorder (ASD) or
ASD characteristics. These children may
become very fixed in their routine and then
not be able to sleep unless the full routine
is completed. For these children, consider
allowing variation in the order of aspects
of the routine to prevent the routines from
becoming too rigid (e.g. Day 1: bathtime,
then brushing teeth, Day 2: brushing teeth,
then bathtime).
zCaffeine
Although a bedtime snack can sometimes
be a helpful aspect of the bedtime routine,
chocolate and drinks such as tea, coffee and
several fizzy drinks contain caffeine which
can interfere with sleep. Make sure that these
are not consumed 6 hours before bedtime.
zExercise
Do not be tempted to provide lots of activity
as part of the bedtime routine to ‘tire children
out’. Exercise raises the internal temperature
of the body and can prevent us from feeling
drowsy at bedtime. Instead try and limit
energetic activity in the final hour before
bedtime and instead engage in calming
activities with your child. Exercise can be
helpful throughout the day so try scheduling
it 4-6 hours before bedtime. This will lead to
the body temperature dropping again at just
the right time for your child to feel drowsy.
zTiming
Putting your child to bed and waking them at
the same time each day can also be helpful.
Work out how many hours of sleep your
child needs (using the recommendations in
Part One of this guide and your sleep diary),
and what time they need to be awake for
school. Count the recommended number
of hours of sleep backwards from the ideal
wake time to work out the ideal bedtime.
zBedroom environment
Ensure that a child’s bed is associated with
sleeping, not with playing; so if possible do
not keep toys in the bedroom (or put them
away in cupboards as part of the bedtime
routine). This strategy is called “stimulus
control”, where the bed, bedroom and
bedtime routine all signal sleep. If your child
is awake in bed for more than 20 minutes,
they will associate being in bed with being
awake, rather than with being asleep.
Consider moving them downstairs until
they feel sleepier. Be careful not to engage in
energetic activities in this period. Check your
child’s bedroom for noise levels, temperature,
light or anything else which might be
disturbing their sleep. For example, extended
hours of daylight in summer can cause
problems with settling and early waking, so
fitting blackout blinds may be helpful.
zSleep associations
Ensure that, as far as possible, the
environment that your child falls asleep in
is the same as it would be if they were then
to wake during the night because this will
be reassuring for them when they wake. For
example, if your child settles to sleep with a
night light on, do not turn that off once you
have checked they are asleep. This should
be a particular priority for children who
experience anxiety around bedtime.

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zScreen time
It is also important to try and limit use
of devices which emit bright light (such
as televisions, computers and tablets)
close to bedtime. This is because just 10
minutes of light exposure interferes with the
brain’s production of the ‘sleepy’ hormone,
melatonin53. The Sleep Council’s ‘Good Night
Guide for Children’, which is listed in the
Resources section on page 26, recommends
turning off all screens in the hour before
bedtime. If the use of a tablet is an essential,
non-negotiable part of your child’s bedtime
routine before bed or upon waking during the
night, you could install an application to filter
out blue light (the particular ‘wave’ of light
which interferes most with melatonin). These
can be downloaded from the app store on
iOS or on Android devices.
If, once you feel confident about your child’s
sleep hygiene and bed time routine, the sleep
problem persists, consider trialling one (or more)
of the following strategies. Bear in mind that your
child may show some challenging behaviour
in response to these techniques (see Cerebra’s
Self-injurious Behaviour guide, included in
the Resources section on page 26) – and this
behaviour may seem to get worse at first. This is
normal – keep going. It is usually best to try one
strategy at a time, ensuring you are being as
consistent as possible.
What should I do when my
child just will not go to sleep?
Often settling problems can be caused by a lack
of bedtime routine or perhaps the bedroom
being associated with activities other than sleep.
However, even after establishing a calming
bedtime routine, it may be that your child does
not want to go to sleep and cries out to you. This
may be distressing for you as a parent to hear
and your natural reaction may be to go back into
your child’s bedroom. As described in Part One,
this may be contributing to the problem, and so
the next step for intervention would be to stop
reinforcing the settling problem.
This may require ‘ignoring’ your child’s cries, which
is known as extinction. However, this can be very
difficult for parents and children, so graduated
extinction is recommended54.
Agree a set amount of time (e.g. 2 minutes) that
you will allow your child to cry for, before briefly
checking on them.
1. When your child has been crying for the 2
minutes, go in and check them. This checking
should only be to reassure yourself that the
child is alright and to tell them to go back to
bed. When you check on them, do not offer
physical interaction, music, or any other
aspect of the bedtime routine.
2. Leave the room and wait the agreed time
before repeating the checking procedure.
3. You may have to repeat this many times
before your child eventually falls asleep, so
it’s a good idea to start on a Friday night or
another evening where no one has school or
work the next day.
4. The next night, gradually increase the
amount of time you allow before checking on
your child (e.g. from 2 minutes to 4 minutes),
and continue to keep the checking procedure
brief.
5. Repeat this until the child’s crying at settling
reduces.
If the suggested times here are too long, try just
waiting for one minute before checking and then
gradually increase the time by 30 seconds each
night. Eventually your child will learn to settle
themselves to sleep without you there.
What can I do if I cannot leave
my child to cry?
If graduated extinction does not seem
appropriate or possible in your situation (maybe
because as well as crying out when you leave,
your child also shows challenging behaviour

22/36
which may harm them, someone else or the
environment, or your child has a history of
seizures) then you can try bedtime fading55. This
involves keeping your child awake later than
usual so that they become so tired that they
fall asleep by themselves. For example, if you
usually put your child to bed at 8:30pm, but they
struggle to settle at this time, try keeping them
awake until 11pm. If at this temporary bedtime
they are able to fall asleep by themselves, then
you can ‘fade’ bedtime back to a more acceptable
time very gradually.
When selecting the temporary bedtime, consult
the sleep diary you completed at the assessment
stage for times when your child fell asleep by
themselves (e.g. when they were late going to
bed because of a family party) and then add 30
minutes. This is likely to be quite late, but should
be when your child is so tired that they go to bed
without trouble. If you are unsure, experiment
by allowing your child to stay up late and seeing
when they naturally fall asleep.
1. Complete the bedtime routine for 30-60
minutes before the new bedtime.
2. Do not allow your child to fall asleep until
they are in their bed. Also ensure that they
are not awake in bed for more than 20
minutes. If your child is still awake at this
point, get them out of bed for another hour
before putting them to bed. Avoid energetic
activities, but keep them awake (for example
by reading stories, putting toys away). It is
vital that they fall asleep in bed. If your child
is napping during the day, they may not be
tired until later in the evening, and so trying to
reduce napping may be necessary first (see
“What should I do if my child naps for long
periods of the day?” on page 24).
3. Once your child has fallen asleep within 20
minutes for 2 consecutive nights at the late
bedtime, you can begin to move bedtime
(and the start of the bedtime routine) earlier
by 15 minutes each night.
4. Repeat this until you reach the bedtime you
want or until your child no longer falls asleep
within 20 minutes.
5. Bear in mind that children may need
different amounts of sleep at different
ages or compared to other children (see
the recommendations on page 5), and so
the ‘ideal’ bedtime you choose should be
appropriate for their individual needs. You
will also need to stay up until this strategy
is effective, which may take a few weeks.
Graduated extinction may be quicker
(sometimes only a few days), but may be
harder in other ways56. Choose whatever
works best for you, your child and your
family.
What can I do if my child needs
me to be there in order for them
to sleep?
For some children, falling asleep without an adult
with them seems impossible. Perhaps your child
is used to you sleeping in bed with them, or on a
chair in the corner of their room. Although your
presence may help them settle to sleep initially, if
these same conditions are not in place when they
wake up in the middle of the night, they may
struggle to settle themselves back to sleep. In
order to help your child learn to fall back to sleep
by themselves, you could try gradual withdrawal.
If, for example, you usually sleep in the same
bed as your child, try sleeping on the floor next
to them. After three nights, move slightly further
away. After three more nights, you could sleep
on a chair next to the bed. Then try moving to
the corner, then outside the room. If your child
cries and tries to get you to come into bed with
them be firm. Avoid conversation and eye contact
if possible. This may be very difficult at first but
eventually your child will learn to fall asleep
without you there.

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What should I do if the settling
problem comes back?
With each of the strategies described above,
seemingly ‘cured’ settling problems can return
after anything that causes a change in the
routine. This might be an illness or a family
holiday. Think ahead about how you might be
able to preserve your child’s bedtime routine,
even in the midst of these events, for example
by taking the items needed for their bedtime
routine on holiday. If disruptions to the routine
are unavoidable, be consistent as soon as things
return to normal.
What can I do if my child has
problems with settling AND
night waking?
Many children who do not sleep through the
night also have settling problems57, and these
can aggravate the night wakings. For example, if
children fall asleep with the light on, whilst being
held or sung to by a parent, they may never
learn to settle themselves to sleep independently
(self-soothing). This means that when they
experience a brief arousal in the night (see Box
1 on page 4), they do not have strategies to put
themselves back to sleep. This causes them to
cry out for the parent, who is likely to respond
and probably make the child more alert. This
reinforces the waking behaviour and so the
pattern of not falling asleep independently is
continued, as explained in Part One on page
4. Therefore, for children with multiple sleep
problems it is best to target the settling problem
first. Once the child can settle themselves, night
waking sometimes decreases57. If the night
waking does not reduce spontaneously you can
use the same strategies for settling your child
to sleep in the evening, described above, to help
your help to settle back to sleep after a night
waking.
My child wakes in the night or
early in the morning but does
not wake me… What should I
do?
When children wake they are not always
disruptive, some may be content to lie awake
in bed or wander around the house, play with
toys etc. Although they do not necessarily disturb
anyone else, this disrupted sleep can cause
daytime sleepiness for them and interfere with
their learning the next day. Graduated extinction
is not necessary because they are not crying out,
so a strategy known as sleep restriction can be
useful55. Sleep restriction involves reducing the
amount of time a child is in bed to the amount
of time that they are actually asleep. This will
probably involve putting your child to bed later to
make them really tired, so that they sleep more
soundly.
1. Use your child’s sleep diary to work out how
long they are actually asleep for (not time
in bed – so subtract the time it takes them
to settle and all waking times) on average
throughout the week.
2. Then multiply the number of hours by 0.9 to
restrict that sleep time to 90%.
3. Adjust either bedtime or wake time to
restrict your child’s sleep to new number of
hours. Do not restrict to less than 4 ½ hours.
For example, if your child usually sleeps for
an average of 7 and a half hours a night,
multiply this by 0.9 to work out 90% (7.5 x
0.9 = 6.75). 90% is therefore 6.75 hours (i.e.
6 and ¾ hours, 6 hours 45 minutes). This is
the new amount of time you should restrict
your child’s sleep to, by shifting the bed time
to roughly 45 minutes later or wake time to
roughly 45 minutes earlier.
4. If your child is ever awake in bed for more
than 20 minutes, get them out of bed and
have them do something quiet and soothing
downstairs for 15-30 minutes.

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5. After one week without night waking on this
new schedule of restricted sleep, begin to
move to the previous schedule by about 15
minutes. This means either letting your child
go to bed 15 minutes earlier, or sleeping in
15 minutes longer each week.
Sleep restriction by waking the child earlier is
recommended, because once you start to adjust
the schedule it is easier to sleep for 15 minutes
longer in the morning than go to bed earlier in
the evening58. Daytime napping should also be
restricted, using the procedure explained below.
My child wakes in the night or
early in the morning and wakes
EVERYONE…. What can we do?
Some children who experience night waking
may show disruptive or challenging behaviours,
crying, entering their parents’ bedroom etc., which
may wake parents and other family members.
If this is the case, graduated extinction is likely to
be more appropriate than sleep restriction. Using
this procedure, parents should wait for gradually
increasing amounts of time (for example 2
minutes, 4 minutes, 6 minutes, 8 minutes, 10
minutes etc) before checking on the child when
they wake up and cry out. This technique, fully
outlined in the “What should I do when my
child just will not go to sleep?” on page 21 is
useful when a bedtime routine with regular
sleep-wake times and good sleep hygiene is
already in place. When children’s behaviour is so
disruptive that they cannot be ignored, even for
just a few minutes, sleep restriction may be more
appropriate.
Another strategy for night waking involves gently
waking your child in the 30 minute period before
they usually wake up59. Due to the sleep stages
outlined in Part One on page 4, it is possible that
your child will have fairly consistent wake times
(check the sleep diary you completed in the
assessment stage).
Gently wake your child 30 minutes before their
typical wake time, (do not fully awake them, but
just gently touch them so that they open their
eyes briefly) and then allow them to fall back
to sleep. You may need to try several different
scheduled awakening times to see what works
best for your child. If your child wakes fully and
cannot go back to sleep, try waking them 15
minutes earlier the next night. Once you have
found the right time to wake your child, repeat the
scheduled awakening until they sleep for seven
full nights without waking. Then skip one night
per week (i.e. don’t do the scheduled awakening).
If your child has night wakings again, go back
to using scheduled awakening each night.
Then slowly reduce the number of scheduled
awakening nights each week. This technique
has the advantage of preventing night wakings
without allowing the child to be disruptive, but
can be difficult for the parent whose own sleep is
very much disrupted by having to conduct the
scheduled awakenings. Again, choose whatever
works best for you, your child and your family!
What should I do if my child
naps for long periods of the
day?
Although napping can be beneficial for some
children, if your child has fallen into a pattern of
napping during the day, and wakes frequently
or has trouble settling at night, it is possible that
they are not tired enough at bedtime21. Therefore,
reducing nap time could be critical to improving
sleep. This should be done gradually, for example
by waking your child up from a nap 5 minutes
earlier each week until napping stops altogether.
If it is easier to wake the child at a set time (for
example in time to pick up a sibling from school
in the car, an activity they may enjoy), consider
delaying the nap by five minutes each week,
rather than waking them earlier. Since many
children nap on the journey to and from school,
and/or when they are there, you may need to
talk to your child’s teacher to ensure this strategy
is enforced consistently.

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What can I do if these strategies
don’t work or my child has a
sleep problem which is not listed
here?
Sleep is not an exact science, and it may take
various attempts at different strategies to work
out which one is best for you and your child.
If you need help implementing any of these
strategies, or any other advice on sleep, consider
contacting Cerebra’s Sleep Service on 01267
244210 or sleep@cerebra.org.uk.

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Resources
For general information about sleep in children and adults, The Sleep Council is a very useful resource.
Their leaflet ‘The Good Night Guide for Children’ is not specific to children with intellectual disability,
but is very relevant. It can be downloaded from their website here: http://www.sleepcouncil.org.uk/
helpful-leaflets
For more detailed information about sleep in specific genetic syndromes, check out the FIND
website, run by the team at the Cerebra Centre for Neurodevelopmental Disorders at the University of
Birmingham: www.findresources.co.uk
The syndrome support group relevant to the individual you care for may also be able to provide more
detailed information about sleep in that specific syndrome.
Cerebra has guidance, freely available on their website (http://w3.cerebra.org.uk/help-and-
information/guides-for-parents/) on factors that may affect sleep. These include:
zAnxiety: A Guide for Parents–http://w3.cerebra.org.uk/help-and-information/guides-for-
parents/cerebra-anxiety-guide-guide-parents/
zPain: A Guide for Parents–http://w3.cerebra.org.uk/help-and-information/guides-for-parents/
pain-in-children-with-severe-intellectual-disability-a-guide-for-parents/
zSelf-injurious behaviour in children with intellectual disability -http://w3.cerebra.org.uk/research/
research-papers/self-injurious-behaviour-in-children-with-intellectual-disability/
For more detailed information about the intervention strategies introduced in this guide, Mark Durand’s
2014 book ‘Sleep better.A guide to improving sleep for children with special needs’ can be purchased
online.

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Glossary
Bedtime resistance: A term used to describe
the behaviours an individual shows rather
than settling to sleep, when asked to do so at
bedtime. This may include attempting to delay
or extending the bedtime routine, challenging
behaviour, or calling out to parents once they
have left the room. Children who show bedtime
resistance are sometimes described as having
‘settling problems’.
Brief arousal: A normal waking in the night which
occurs between sleep cycles and as an individual
transitions between stages of the sleep cycle.
Challenging behaviour: Any behaviour that
could potentially cause injury to the individual
(self-injurious behaviour) or to those around
them (aggressive behaviour), or impact on the
individual’s day to day life by disrupting activities
or restricting which activities are available.
Circadian rhythm: Biological processes which
occur within a day, including the sleep-wake
cycle. This can be thought of as an ‘internal body
clock’ which tells us when we feel sleepy and
awake, based on external cues from the light/
dark cycle, social opportunities and meal times.
Excessive daytime sleepiness: A type of sleep
problem where an individual has a consistent lack
of energy and feels sleepy throughout the day,
despite apparently sleeping adequately the night
before.
Gastro-oesophageal reflux disorder: A disorder
caused by stomach acid leaking from the
stomach up into the oesophagus (the tube from
the mouth to the stomach), potentially causing
discomfort and pain which could lead to disturbed
sleep.
Insomnia: A term used to describe a range
of sleep problems common in children with
intellectual disability, including problems with
settling to sleep, waking during the night, and
waking early in the morning.
Learned association: A term used to describe the
association between an individual’s behaviour
and a specific consequence, when over time that
consequence is reliably provided in response to
the behaviour.
Melatonin: A hormone, involved in sleep and
wakefulness, which occurs naturally in the brain
and is sometimes prescribed ‘off-label’ for children
with sleep problems. Melatonin production may
be different in different genetic syndromes.
NREM: The first three stages of sleep are referred
to as non-rapid eye movement (NREM) sleep.
Parasomnias: A broad range of unusual
movements or behaviours which can happen
at any stage of NREM or REM sleep, such as
sleep-walking, nightmares, sleep paralysis and
nocturnal head-banging.
Reinforcement: A behaviour is reinforced when
there is a response to it which acts as a reward
of some kind. This reward makes the behaviour
more likely. For example when a child experiences
social contact as rewarding, if a parent provides
this in response to a night waking, the night
waking is more likely to continue (i.e. it is
reinforced).
REM: Rapid-eye movement sleep is the fourth
stage of sleep in the sleep cycle. It is the stage of
sleep where most dreams occur.
Self-soothe: A term used to describe an
individual’s ability to settle themselves back
to sleep after waking in the night, rather than
needing a parent or specific environment in order
to settle to sleep.
Sleep-related breathing disorder: A physical
problem which affects sleep when an individual’s
breathing becomes laboured and they wake up
several times in the night. These wakings are not
usually remembered the next day but seem to
disrupt sleep quality.

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Sleep paralysis: A type of parasomnia, where an
individual briefly feels that they cannot speak or
move immediately upon waking up or just before
falling asleep. This feeling lasts for a few minutes
at most, and is not harmful, but can be quite
frightening for the individual.
Typically developing: A term used to describe
children without an intellectual disability or
neurodevelopmental disorder.
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About the Authors
Dr Caroline Richards
Dr Caroline Richards, Lecturer in Neurodevelopmental Disorders, is a Clinical Psychologist and
researcher leading Cerebra funded research into sleep disorders with the Cerebra Centre for
Neurodevelopmental Disorders - University of Birmingham. Her research focuses on reducing
negative clinical outcomes for individuals with neurodevelopmental disorders. The Cerebra funded
sleep research is trying to understand why sleep problems occur and help families find solutions to
them.
Georgie Agar
Georgie Agar is a first year PhD student at the Cerebra Centre for Neurodevelopmental Disorders at
the University of Birmingham. She completed her Masters with the team working with children with
intellectual disability who show self-injurious behaviour and autism spectrum disorder characteristics.
Under the supervision of Dr Caroline Richards and Professor Chris Oliver, her Cerebra funded PhD will
focus on developing and evaluating intervention techniques for sleep problems in individuals with
neurodevelopmental disorders.
Jayne Trickett
Jayne Trickett undertook a three year Cerebra funded PhD at the Cerebra Centre for
Neurodevelopmental Disorders at the University of Birmingham under the supervision of Dr Caroline
Richards, Dr Mary Heald and Professor Chris Oliver. Jayne’s PhD research described the profile of sleep
disturbance experienced by children with neurodevelopmental disorders, to include children with
Smith-Magenis syndrome, Angelman syndrome, Tuberous Sclerosis Complex and autism spectrum
disorder. Prior to studying for a PhD Jayne completed a Masters degree in Clinical Psychology with the
Cerebra Centre for Neurodevelopmental Disorders. Jayne now works as a postdoctoral researcher.
Prof. Chris Oliver
Chris Oliver is Professor of Neurodevelopmental Disorders at the University of Birmingham and director
of the Cerebra Centre for Neurodevelopmental Disorders. He trained as a clinical psychologist at
Edinburgh University before completing a PhD on self-injurious behaviour in people with intellectual
disability at the Institute of Psychiatry, London. He is currently researching early intervention, behaviour
disorders in people with severe intellectual disability and autism spectrum disorder, behavioural
phenotypes in genetic syndromes and neuropsychological and behavioural assessment for people
with severe intellectual disability. He has published over 100 peer reviewed articles in scientific journals,
is Editor in Chief for the Journal of Intellectual Disability Research and serves on a number of scientific
advisory committees for syndrome support groups. Sadly, he supports Luton Town Football Club.

The findings of this report are those of the author, not necessarily
those of Cerebra.
First edition: 2017
This edition: 2017
Review date: 2020
About the Reviewer
Dr Luci Wiggs
Dr Luci Wiggs of Oxford Brookes University is a Reader in psychology and chartered psychologist who
conducts clinical research into sleep, its disorders and treatments and the effects of sleep disruption
on daytime functioning, with a special interest in children with developmental disorders. She is
currently an Associate Editor for the Journal of Sleep Research. She has previously served for many
years as a board member of the British Sleep Society’s Executive and Scientific Committees and
the European Paediatric Sleep Group as well as chairing the European Sleep Research Society’s
Education Committee and the British Sleep Society Paediatric Group.

Working wonders
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