Preventing challenging behaviours in children with Down syndrome: Attention to early developing repertoires
Kathleen Feeley and Emily Jones
Several characteristics associated with the Down syndrome behavioural phenotype as well as biological factors
are likely to increase the presence of challenging behaviour in individuals with Down syndrome. The application
of evidenced based strategies assessing and addressing challenging behaviours in individuals with developmental
disabilities can be systematically applied to address such behaviours in individuals with Down syndrome.
Additionally, evidence based strategies can be systematically implemented by caregivers of very young children
with Down syndrome to address early communication skills (requesting, vocal imitation), escape behaviours,
and self stimulatory behaviour thus diminishing early developing behaviours likely to lead to more significant
challenges as the child with Down syndrome matures.
Feeley KM, Jones EA. Preventing challenging behaviours in children with Down syndrome: Attention to early developing repertoires. Down Syndrome Research and Practice. 2008;12(1);11-14.
There has been much attention directed toward the identification of specific characteristics
associated with the Down syndrome behavioural phenotype. Researchers have identified
patterns of behavioural characteristics including strengths in the areas of social
functioning[1,2] and weaknesses in such areas
as communication[3,4], short term memory, and cognition (e.g., problem solving).
As others have proposed[7,8], this knowledge,
combined with research demonstrating effective intervention strategies, enables
us to explore matching evidence based intervention procedures with specific behavioural
characteristics to further advance the development of individuals with Down syndrome.
One area of concern with regard to the development of individuals with Down syndrome
is the likelihood of challenging behaviours. It is believed the presence of several
characteristics associated with the Down syndrome behavioural phenotype directly
increase the likelihood of individuals with Down syndrome exhibiting challenging
behaviour. Specifically, the increased desire to escape tasks, impaired communication
skills, and possibly, enhanced social motivation, are likely to contribute to an
individual with Down syndrome developing challenging behaviours. Fortunately, there
is a compendium of evidenced based strategies regarding the assessment and intervention
of such behaviours. Over the past several decades, our knowledge has grown exponentially
in relation to assessment, prevention, and amelioration of challenging behaviours
in individuals with developmental disabilities. In this paper, we present several
recommendations matching evidence based intervention strategies with specific challenges
faced by children with Down syndrome. These recommendations have the potential to
improve outcomes for individuals with Down syndrome.
Increased likelihood of challenging behaviour
One characteristic long associated with individuals with Down syndrome is their
tendency to be stubborn[9,10]. Additionally,
several studies specifically examining the presence of challenging behaviour in
individuals with Down syndrome indicate challenging behaviours take many forms such
as noncompliance, compulsions, and talking to oneself[11-14].
Additionally, behaviours such as those associated with anxiety, depression and withdrawal
have been noted to increase with age[12,15].
As we seek to identify interventions to ameliorate these challenging behaviours,
it is important to consider early developing characteristics, those that have been
identified as part of the Down syndrome behavioural phenotype, that are likely to
contribute to the presence of more significant challenging behaviours in individuals
with Down syndrome. Attention to them may prevent the development of more significant
challenging behaviour as the child matures.
One characteristic of young children with Down syndrome is their increased likelihood
of engaging in behaviour to avoid learning tasks. As demonstrated by the work of
Wishart and her colleagues, such "opting" out of learning opportunities
is apparent within the first year of life[16,17,18].
Thus, the youngest of children with Down syndrome are engaging in specific behaviours
that interfere with skill development. Within the toddler years, these opting out
behaviours often take the form of "cute" party trick behaviours to "get
out" of situations, specifically learning tasks. Such behaviours appear to
persist throughout childhood and adolescence preventing children with Down syndrome
from accessing important learning opportunities.
Researchers have also described individuals with Down syndrome as having strengths
in social functioning. This may be the result
of children with Down syndrome being motivated to engage in social interactions
with others. However, this increased desire to engage in social interactions may
also result in an increase in socially motivated challenging behaviour (e.g., throwing
food items during mealtime so Mom immediately comes over to the child and picks
up the food items, coaxing the child to continue eating). Additionally, children
with Down syndrome demonstrate weaker skills in reading other's emotions. Therefore, the child with Down syndrome may
in fact be rewarded by receiving any type of attention regardless of whether that
attention would be considered positive (e.g., verbal praise, smile) or negative
in nature (e.g., reprimand, stern look).
Another characteristic associated with the Down syndrome behavioural phenotype that
influences the likelihood of challenging behaviour is the presence of communication
impairments associated with Down syndrome. Specifically, the impairments in expressive
communication are well documented[3,4,20]
and are apparent quite early in development. For example, requesting behaviours,
that emerge in the first year of life in typically developing children, are impaired
in children with Down syndrome (e.g., refs 6,21,22,23).
During the later years, speech intelligibility is also quite poor in individuals
with Down syndrome. Impaired communication
not only results in reduced social interactions, but also likely increases the probability
of challenging behaviours emitted due to the lack of more appropriate communicative
These characteristics, all related to the Down syndrome behavioural phenotype, affect
the developing behavioural repertoires of individuals with Down syndrome. In addition,
these characteristics can be exacerbated by biological factors associated with Down
syndrome. For example, illness and sleep
disorders (which occur with higher incidence in individuals with Down syndrome)
are both likely to have an extensive effect on engagement in challenging behaviours.
Thus, specific behaviours and impairments, emerging at a very early age, compounded
by the presence of biological factors, are likely to result not only in the development
of challenging behaviours during the toddler years, but the maintenance of these
behaviours throughout childhood. Such behaviours also not only interfere with the
acquisition of skills, but, in many communities, preclude individuals with Down
syndrome from opportunities with typical peers within educational, community, and
employment settings. In light of the negative impact challenging behaviours can
have, attention to the identification of effective interventions that correspond
to the characteristic behavioural deficits associated with the Down syndrome behavioural
phenotype, beginning at the earliest stages of development, is essential.
Evidence based interventions
One of the greatest contributions to the quality of life of individuals with developmental
disabilities has been the development of functional behaviour assessment procedures
and implementation of positive behaviour support strategies.
These technologies have enhanced quality of life, creating access to community schools,
housing, recreation, and employment for many individuals with developmental disabilities.
In previous work, we provided an overview
of the functional assessment process and
identified studies demonstrating the effectiveness of behavioural intervention strategies
to address specific behavioural challenges often seen in individuals with Down syndrome.
Thus, empirically demonstrated strategies to address challenging behaviour in individuals
with Down syndrome do exist. With the identification of an early emerging Down syndrome
behavioural phenotype, it is now possible to explore the matching of intervention
strategies to address these characteristic behaviours before they become significant
challenging behaviours that disrupt skill acquisition.
Preventing challenging behaviours from entering the repertoire of young children
with Down syndrome
Based on our extensive review of the literature addressing challenging behaviours
in individuals with developmental disabilities and our own intervention research
(as well as our clinical work in both home and school settings), we suggest several
recommendations that can prevent or minimise the emergence of challenging behaviours
within the repertoire of individuals with Down syndrome.
Recommendation 1: Provide caregivers with information regarding identifying and
intervening upon potentially challenging behaviours
"Challenging behaviours" are quite common and transient in typically developing
children. For example, it is not uncommon for a typically developing child to tantrum,
act aggressively toward a peer, or engage in an idiosyncratic behaviour that he/she
finds stimulating (e.g., staring at a spinning ceiling fan). However, it is when
these behaviours interfere with social relationships, cause injury to self or others,
or prevent the acquisition of new skills
that intervention is warranted. Unfortunately, it is not always readily obvious
when the child has "crossed the line" between typical behaviours and those
that are, or will soon develop into, problematic behaviours. Thus, it is essential
that caregivers (both family members and early interventionists) be informed of
the behaviours that are characteristic of young children with Down syndrome and
are likely to become problematic over time.
One means of identifying such behaviours is to gain an understanding of the functions
that the behaviours serve for a particular child. Thus, caregivers should be empowered
with the understanding that behaviours emitted by children serve a function (e.g.,
to escape an activity, to obtain an item) and the manner in which those behaviours
are consequated will result in either their increase or decrease over time. There
is much empirical support for this notion, as analysis of the intervention literature
has determined that when intervention is based upon a functional assessment, the
effectiveness of intervention procedures is improved.
Thus, given strategies to determine the function of behaviours, caregivers can then
be advised to intervene upon these specific behaviours in a timely fashion. This
urgency is not because we are certain that all of the behaviours will become problematic
with time, but because, at the early stages of development, one cannot predict which
behaviours will become problematic for an individual child. Additionally, addressing
challenging behaviours when the child is young prevents a history of engagement
in the behaviour which in turn increases the likelihood of amelioration. In our
experience when all caregivers are active members of the child's team and receive
ongoing training, as described above, the typical challenges that arise are easier
to ameliorate and thus do not become significant over time. Therefore, it is essential
to provide caregivers with training to prepare them to address the presence of early
escape behaviours (e.g., throwing materials, turning away from challenging tasks),
self-stimulatory behaviours (e.g., teeth grinding, hand waving, rocking), and inappropriate
attention seeking behaviours (e.g., approaching a forbidden area).
Recommendation 2: Develop strategies to address early escape behaviours
As demonstrated by Wishart, very young children with Down syndrome have a propensity
to opt out of learning situations[8,17].
Such refusal to engage in tasks results in inconsistent performance over time[18,32].
When these behaviours appear during the toddler and preschool years, they can easily
be interpreted as "typical" childhood behaviours. However, the young child
who consistently escapes from difficult tasks during the toddler years can become
the young child or elementary school student who also seeks to escape rather than
to tackle the task at hand and now has a long history of successfully doing so.
Thus, using strategies that prevent the occurrence of escape behaviour, from a very
early age, may minimise the negative effects that are likely to present themselves
at a later point in time developing into a pattern of escape motivated behaviour.
There are several antecedent strategies that can be used to prevent the occurrence
of escape behaviour. For example, task difficulty can be manipulated so that the
task is less challenging and less likely to result in challenging behaviour. Once
the child with Down syndrome is performing the task at that level, the difficulty
level of the task can be gradually increased. Additionally, specific prompts can
be delivered to ensure successful engagement in the task (e.g., errorless learning
strategies). Consequence strategies involving reinforcement can also be utilised
to increase the value of engaging in the task. For example, we have had tremendous
success using token systems with toddlers with Down syndrome.
Laminated photos of preferred cartoon characters are attached to a strip of cardboard
each time the target response is performed. When a pre-determined number of responses
occur (determined by individual child performance), a reinforcing item/activity
is delivered (e.g., singing a song, playing a game, accessing a toy). A combination
of these strategies (antecedent and consequence strategies) has led to decreased
escape behaviour, increased engagement in target responses, and increased attention
during instructional/therapeutic opportunities in children with Down syndrome.
Recommendation 3: Teach requesting behaviours
One communication impairment that appears early in development in children with
Down syndrome is that of requesting[6,21,22,23].
Seen in typical infants during the latter half of the first year of life, requesting
takes multiple forms including the use of eye gaze, gesture (e.g., pointing), and
vocalisation to regulate the behaviour of another (e.g., to access an object or
activity). Although requesting behaviours are particularly important as they are
directly related to later communicative and cognitive competence (e.g., refs
are only a handful of studies that specifically targeted requesting skills for intervention[36,37]. Keeping in mind that the lack of effective
communication skills is likely to result in the onset of challenging behaviours, intervention is warranted to provide the individual
with Down syndrome an appropriate means of communicating.
We have taught communication skills, including requesting, with intensive instruction involving repeated opportunities presented
in close temporal proximity, with little or no engagement in alternate activities
between opportunities, utilising specific prompting procedures and high rates of
reinforcement[39,40]. We taught young children
with Down syndrome (between 10 and 26 months of age) requesting responses consisting
of eye gaze and vocalisation (e.g., an open mouth sound), with some of the children
being taught to emit the sound "mmm" as an approximation of more[39,41]. The response
taught involved a request for continuation of a preferred activity with an object
(e.g., shaking and then tickling with a small stuffed toy). Intervention was then
applied to teach requests involving assistance (described by Fidler et al., as instrumental
requests). Our findings suggest that this
intervention was effective in addressing requesting deficits. In addition there
is a need to systematically teach requesting in a variety of situations to ensure
children with Down syndrome possess requesting skills commensurate with typical
Requesting may be a "pivotal" skill for children with Down syndrome. Pivotal
skills are those that, once acquired, result in collateral improvements in related
skill areas. There may be several skill
areas, those specifically impaired in young children with Down syndrome (part of
the behavioural phenotype), including short term memory and imitation, that are
likely to operate as pivotal skills. Children with Down syndrome show strong visual
motor imitation skills, but impaired vocal imitation skills[43,44]. Imitation
has been linked to expressive language[45,46];
and play skills. Therefore vocal imitation
may in fact be a pivotal skills and, fortunately, there exists empirically validated
interventions to address vocal imitation skills in young children with developmental
disabilities. However, systematic applications
of vocal imitation interventions taking place with young children with Down syndrome
Recently, we assessed the imitation skills of six children with Down syndrome (2
years old) and found that none of the children demonstrated vocal imitation. We taught caregivers to use intensive instruction
(the same type of instruction we used to teach requesting: multiple closely placed
teaching opportunities, using systematic prompting procedures and the delivery of
predetermined consequences). The children were first taught motor imitation (e.g.,
tap head, tap table, clap hands) and then vocal imitation (e.g., "aah"
"ba" "mmm"). Not only did each child acquire the vocal skills
targeted for imitation, but after having acquired between 3 and 4 specific sounds
in vocal imitation, participants demonstrated generalised imitation. That is, they
imitated or attempted to imitate any vocalisation asked of them. This allowed for
the prompting of verbal approximations using verbal models within naturally occurring
situations (e.g., "mmm" for more, "hup" for help, and "em"
for an approximation of Emily, one of the participants' names). Thus, establishing
early vocal imitation skills allowed for the prompting of other communication behaviours
across multiple environments.
With respect to preventing challenging behaviours, gains in early imitation and
communication skills allow caregivers to prompt more appropriate responses in situations
where a child may be likely to engage in a challenging behaviour to request attention
or access to a tangible, in addition to situations in which he/she desires to escape
(e.g., say "done" to indicate the desire to terminate an activity). Doing
so prior to the occurrence of the challenging behaviour allows reinforcement to
be delivered as a consequence for appropriate behaviour, rather than for engagement
in challenging behaviour.
Recommendation 4: Decrease the extent to which children engage in self-stimulatory
Self-stimulatory behaviours are behaviours emitted by an individual that result
in automatic reinforcement. Therefore, the individual engages in the behaviour because
it either feels good (i.e., he/she is obtaining some type of pleasure from the act)
or the individual is trying to escape internal stimuli (e.g., a young child bangs
his ear to escape the pain of an ear infection). There is an increased likelihood
of self-stimulatory behaviour associated with developmental disabilities, and, although
not a defining characteristic of Down syndrome, there are many individuals with
Down syndrome who engage in some form of self-stimulatory behaviour (e.g., tongue
clicking, rocking, placing hands in mouth, teeth grinding). These behaviours can
be particularly disruptive to learning opportunities and participation in community
settings, as well as stigmatising with peers.
To illustrate, a 12 month old child with Down syndrome whose intervention programme
was supervised by the first author, tended to rock back and forth. At first, caregivers
thought he was dancing, but then noticed that the behaviour occurred quite often,
when the child was alone as well as in the presence of others, when music was playing
and when there was no music. This suggested that rocking was self-stimulatory in
nature. A simple interruption procedure involving gently holding the child's shoulders
until the rocking stopped, followed by prompting an appropriate social behaviour
(e.g., clapping hands, throwing a kiss, or catching a ball) and reinforcement for
appropriate behaviour resulted in a substantial decrease in the behaviour. There
is strong evidence for the use of these types of interventions to decrease self-stimulatory
behaviours in individuals with developmental disabilities[48,49].
The early application of interventions to decrease self-stimulatory behaviours ensures
that children with Down syndrome are not missing valuable learning opportunities
and/or being socially ostracised as a result of engaging in self-stimulatory behaviour.
The presence of challenging behaviour that interferes with the acquisition of new
skills, stigmatises the child, and prevents access to community environments, is
likely to be manifested during the early stages of development, thus negatively
changing the course of development in the child with Down syndrome. We hypothesise
that adherence to the recommendations outlined above with systematic instruction,
delivered by caregivers (i.e., family members, teachers, related service providers),
it is possible to not only prevent behavioural deficits from entering their repertoire,
but to facilitate the acquisition of a variety of early developing skills in very
young children with Down syndrome. We further propose the following questions for
- What is the best way to empower families with the knowledge they need to identify
and address (via evidence based interventions) early developing behaviours that
have the potential to become challenging over time?
- Does empowering caregivers with such knowledge prevent specific behaviours seen
in young children with Down syndrome that are associated with the Down syndrome
behavioural phenotype (e.g., opting out of learning tasks)?
- Does early attention to these behaviours result in a decrease in the likelihood
that individuals with Down syndrome engage in challenging behaviour throughout their
- What collateral changes result from the matching of interventions with behavioural
phenotype characteristics? For example, does establishing the systematic instruction
of imitation skills enhance communication skills (e.g., requesting) and in turn,
will the early enhancement of communication skills result in changes, not only in
decreasing significant challenging behaviours, but improving cognitive performance
(e.g., problem solving)?
In most communities, children with Down syndrome immediately receive early intervention
services for the primary purpose of ensuring that the child will in fact learn as
many skills as possible to enjoy a productive lifestyle. This goal may be realised
for more children with Down syndrome if we are able to improve the effectiveness
of these intervention services. As research documents the specific characteristics
of the Down syndrome behavioural phenotype, we are faced with the task of drawing
on empirically demonstrated intervention procedures to address those skill weaknesses/impairments.
Matching intervention procedures with characteristic deficits has the potential
to improve the efficiency and effectiveness of intervention efforts, possibly resulting
in collateral changes in other areas of impairment in individuals with Down syndrome,
thus preventing a host of negative outcomes.
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Kathleen M Feeley is Assistant Professor, Department Special Education and Literacy,
Emily A Jones is Assistant Professor, Department of Psychology, both at C.W. Post
Campus of Long Island University, 720 Northern Blvd, Brookville, New York 11548
Correspondence to Kathleen M Feeley â€¢ e-mail:
Paper prepared from presentations and discussions at the Down Syndrome
Research Directions Symposium 2007, Portsmouth, UK. The symposium was
hosted by Down Syndrome Education International in association with the
Anna and John J Sie Foundation, Denver. Major sponsors also included the
Down Syndrome Foundation of Orange County, California and the National
Down Syndrome Society of the USA. Information about the symposium can be
Received: 10 October 2007; Accepted: 17 October 2007;
Published online 2 July 2008
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