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Running head: BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 1 Behavioral Patterns in Children with Down Syndrome Euridiki Damoulianou, Elina Korotkevica, Kyriaki Alexiadi Instructor: Barbara Kondilis PSY220 Developmental Psychology I (Child) Hellenic American University Winter 2011

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Page 1: Down s yndrome

Running head: BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 1

Behavioral Patterns in Children with Down Syndrome

Euridiki Damoulianou, Elina Korotkevica, Kyriaki Alexiadi

Instructor: Barbara Kondilis

PSY220 Developmental Psychology I (Child)

Hellenic American University

Winter 2011

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BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 2

Abstract

This paper contains a detailed observational analysis of children with Down syndrome, an

overview of the causes of this abnormality, its historical background and the physical and

cognitive traits that children with Down syndrome have. In this observational study, 10 boys

and girls with Down-Syndrome (Greek, white, ages 7-18) were observed in their natural

environment (classroom). Specific behaviors on behalf of the teacher were applied in order to

figure out the behavioral responses of children. It was concluded that children with Down

Syndrome interacted effectively with each other, experienced some kind of anxiety after

distracting their routine and adjusted relatively well after the distraction. The Likert scale

(points 0-5) was used to measure children’s emotions and behavioral responses. In the

discussion section, several limitations of the study are mentioned and suggestions are

proposed for further research.

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BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 3

Behavioral Patterns in Children with Down Syndrome

Down syndrome is a “set of mental and physical symptoms that result from having an

extra copy of chromosome 21” (www.nlm.nih.gov). In other words, it is set of physical,

mental and behavioral characteristics that are due to a specific genetic abnormality. It was in

1866 that a physician named John Langdon Down published an essay in England in which he

described a group of children possessing common traits that differed from other children with

mental retardation (Leshin, 2003). In the beginning, children with Down syndrome were

referred as “mongoloids” because they looked like people from Mongolia but as this brought

up later conflicts among Asian researchers, the term was changed (upon the name of the

physician) to Down’s syndrome (Leshin).

In 1959, Jerome Lejeune and Patricia Jacobs, working independently, were the first

to determine that the cause of the syndrome is trisomy (triplication) of the 21st chromosome

(Leshin, 2003). Specifically, every cell in the human body contains genetic material stored in

genes that carry inherited traits which are grouped in structures called chromosomes.  The

nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each

parent.  Down syndrome is caused when an embryo has three copies of chromosome 21

instead of the usual two (www.ndss.org). This supplemental chromosome 21 changes the

embryo’s development and causes the characteristics associated with Down syndrome.

 People with Down syndrome share certain physical and mental features; however,

symptoms may vary from mild to harsh with mental and physical development being slower

in children with Down syndrome than in those without it (www.nlm.nih.gov). The common

features that those people share, involve flattened face and nose, short neck, a small mouth

sometimes with a large tongue, small ears, upward eyes that may have small skin folds at the

inner corner, probably white spots on the iris, short, broad hands with short fingers with a

single crease in the palm and poor muscle tone (www.medicinenet.com).

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BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 4

Apart from the observable physical characteristics, children with Down syndrome

have an increased risk for various medical states such as heart defects, hearing problems,

Alzheimer's disease, leukemia, and thyroid conditions (www.ndss.org). Furthermore, they

experience cognitive delays and difficulties in developing basic language skills, motor skills

and generally learning abilities such as memory problems and concentration problems

difficulty in solving problems and difficulty in the comprehension of consequences of their

actions (www.nhs.uk).

Many researchers have noted that children with Down syndrome have a significant

deficit in language abilities that surpass deterioration in visual-spatial capabilities (Carr,

1970; Melyn & White, 1973, as cited in Vicari, 2006). In particular, they show significant

lower rates at their development, have motor difficulties, and tend to experience more often

hospitalization due to possible poor health conditions (Iarocci, Reebye & Virji-Babul, 2006).

Furthermore, any of the risk factors described above may impair an individual’s ability to get

involved in social interaction both with his or her parents and other people (Iarocci et al.,

2006). Various studies have also found that children with Down syndrome do not obtain

motor skills at the same speed as typically children of the same age do (Vicari); yet, they

seem to pursue the same order of motor milestones of typically developing peers (Vicari). For

example, infants with Down syndrome most of the times sit with legs wide spread, and walk

with a vast pace (Lydic & Steele, 1979, as cited in Vicari). These unusual postures can be

linked to the existence of hypotonia which is often connected with the syndrome (Vicari).

However, other studies suggest that the muscular dysfunction in children with Down

syndrome is depicted by a lack of control of muscles stiffness (Davis & Kelso, 1982, as cited

in Vicari).

Moreover, previous studies suggest that children diagnosed with Down syndrome

may experience limited peer involvement (Stoneman et al., 1988, as cited in Guralnick, 2002)

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BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 5

with noticeable difficulty in socializing with their peers and developing a social network

(Guralnick). Young children seem to have less peer contacts and engage in relatively less

activities with other children in comparison with their siblings and sibling’s friends

(Guralnick). In particular, past research has shown that parents play significant role in

structuring their children’s relationships and involvement with his or hers peers (Parke &

Ladd, 1992; Parke at al., 1994; Guralnick & Neville, 1997; Guralnick, 1999, as cited in

Guralnick). However, about one-third of children with Down syndrome seem to have no

friends to play or interact with at all (Byrne et al., 1988, as cited in Guralnick).

With rare exceptions, children and adolescents with Down syndrome typically lack

sufficient linguistic capacities too (Vicari, 2006). With no evidence suggesting that language

impairment in those children is slightly due to hearing loss, Vicari claims, that “ this is

reported for 40-80% of individuals and, usually it is a consequence of recurrent periods of

otitis media from mild to moderate and, less frequently, sensorineural loss in young adults”

(p.356). Other studies suggest that those children show lower performances in linguistic

tasks as a result of impairment of the frontocerebellar structures which are involved in

articulation and verbal working memory (Vicari). Indeed, when children with Down

syndrome are compared with the typically developing peers, this language impairment is

obviously evident (Vicari).

Furthermore, despite few exceptions, only a small number of people with Down

syndrome have been reported to possess intelligence quotient (IQ) in the normal range

(Vicari, 2006). Intelligence quotient in people with Down syndrome, who are moderately to

severely retarded, ranges from (IQ=25-55) with mental age being approximately at eight

years (Gibson, 1978, as cited in Vicari). Most importantly, when comparing the typically

developing children to individuals with Down syndrome, their IQ tends to decrease as they

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grow older instead of remaining constant as it appears for most of the people (Pennington et

al., 2003, as cited in Vicari).

Most children with Down syndrome appear to have significant behavioral or

emotional problems. Dykens (2007) supports that “children with Down syndrome are more

apt to exhibit such eternizing behaviors as stubbornness, compositionality, inattention, speech

problems, difficulties concentrating, attention-seeking, and impulsivity” (p. 273). Previous

studies have also shown that adolescents with Down syndrome, between 14-19 years old,

showed visible declines in certain behaviors such as attention seeking and concentration

difficulties compared to children with Down syndrome in ages between 4-14 years old

(Dykens). Additionally, adolescents with Down syndrome in ages between 15-20 years old

were rated by their parents as less outgoing, humorous, fun, and cheerful, as when they were

at younger age (Dykens).

The purpose of our study was to investigate the behavioral patterns that children with

Down syndrome display and their interactions with their social environment. It is difficult for

a scientist to define the feelings of the other humans, especially the emotions of persons with

abnormalities because they are too complex and multi-dimensional. Nevertheless, via some

specific external behaviors (such as crying and aggression) researchers can evaluate to a

certain degree the emotional state of a human being. As far as the children with Down

syndrome are concerned, through their behavior and interactions with others, we are able to

examine the existence of negative emotions such as frustration and anxiety.

Thus, our hypothesis, based on previous studies, literature and common sense, was

that children with Down syndrome show significant disturbance when their routine is

changed and generally have major difficulties in their interrelationships, are very sensitive

seeking for attention and affection all the time and experience serious behavioral and

emotional problems such as aggressiveness, anger and continuous crying.

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BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 7

Method

Participants

The participants of the observational study were 10 children diagnosed with Down

syndrome from the middle childhood through adolescence, aged 7 -18 years old. There were

five boys and five girls, Greek, white, from families of different social and financial

background.

Likert Scale

The five-level Likert scale (see Appendix C) was used to rate emotions and

behavioral patterns ranging from 1(no emotional state /disturbance) to 5(strong emotional

state/disturbance).

Procedure

The observational study was conducted in a school for children with special needs.

The emotions which were observed and ranked by using the Likert scale were: crying, anger,

happiness and affection (see Appendix A) The behavioral patterns and interaction styles that

were observed and evaluated using the Likert scale were: self /group play and aggressiveness

among the children with Down syndrome (see Appendix A). To start with, we visited a

school of children with special needs (after taking permission from the director of the school,

see Appendix B) in order to observe their general behavior in the classroom environment.

Before going to the classroom we had a brief discussion with one of the teachers in order to

describe us (based on the experience he had with teaching children with Down Syndrome) the

behavioral and emotional predispositions that children with Down syndrome display.

Afterwards, we went to a classroom that consisted of 10 children (half boys and half

girls) with Down syndrome and we stayed there for about 2 hours, observing them carefully

but from a distance so as not to disturb them or catch their attention. The Likert scale enabled

us to evaluate the behavioral patterns that we wanted to observe. During the first 30 minutes,

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their teacher read them a story and then asked to describe him (verbally or through facial

expressions) their emotions or thoughts about the story. Then, every child was free to do any

activity that he or she wanted. The children engaged in several activities such as drawing,

talking with each other, playing various computer games or group games such as monopoly

and reading some books with short stories and a lot of images. Ten minutes before we left the

class, their teacher tried to “disturb” them a little bit (as we asked him to do during our

discussion) in order to test their reactions. He took away the books that two children were

reading and the painting that another child was holding. He also increased the tone of his

voice, did some quick movements inside the class and spoke to children more strictly than

usual.

When we left the classroom (after having stayed there for about two hours), we went

to another empty classroom where we evaluated and filled in the Likert-scale with the

behavioral patterns observed. We also wrote in the Likert-scale our comments about the

observation. At that point, the observational study ended. During our observation we did not

interact with the children at all and tried not to make them realize that we were observing

them; our purpose was to let them behave naturally.

Research Design

The independent variable of the proposed study, according to the research hypothesis,

was the teacher’s behavior and the dependent variable was the behavioral patterns of children

with Down syndrome, reactions and social interactions.

Results

In general, the children were quiet and shy, not aggressive and did not articulate

verbally their emotions. They expressed their emotions mainly using body language and

facial expressions. They interacted with each other quite well (apart from one child who

obviously had higher degree of mental retardation compared to the other children) and they

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BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 9

seemed to enjoy both self –play and group-play. Every time they got upset or angry they

overcome it quickly and asked very often for affection and hugs. They got only upset if

someone got away their things or spoke to them in an aggressive way, however, they forgot it

very easily.

More specifically, while their teacher read them a story and asked them to express

their emotions about it, eight out of the ten subjects used facial expressions and body

language to show their feelings. Only two of the participants talked about their emotions for

the story. The other subjects every time they heard about an unpleasant event that happened

in the story expressed their unhappiness by putting their tongue out, their head down and

closing their eyes. Only two girls cried every time they heard about a sad event that happened

to the story. This might be an indicator that gender plays a role on the degree of sensitivity in

children with Down syndrome.

During the free- time activity, nine out of the ten participants (apart from the boy with

the high degree of mental retardation who was sitting alone most of the time) interacted with

each other without evident difficulty. They collaborated harmoniously with each other and

played some group games without showing aggressiveness or stubbornness .They often

smiled and hugged with each other. This showed that they wanted to have friends and needed

affection and love from the others. They also seemed to enjoy self- play (for example to play

a computer game). This shows that despite their mental- retardation they enjoyed performing

various activities instead of just sitting alone and doing nothing.

When their teacher tried to test their reactions to examine how they would react if

someone disturbed them, it was found out that if someone tried to take away their personal

things or speak to them aggressively they got upset and frustrated. The children observed did

quick movements and showed their anxiety using facial expressions associated with anger

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BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 10

and tremble. Nevertheless, if the teacher showed show affection and hug them, they calmed

down very easily and their routine became usual without difficulties.

The mode (the most frequent score among the 10 participants of the observation) for

crying was 0 – 5 (only two of the subjects cried but the others did not cry at all). Regarding

self-play, nine out of the ten participants seemed to fully enjoy self-play and for group-play,

four out of five (almost all children seemed to enjoy to a significant degree the group- play

with their peers). As far as the happiness mode is concerned, it was 4 out of 5 (most of the

children seemed to be generally happy and calm and if they got upset they calmed down very

easily). The mode for anger and anxiety in general was 0 but if someone disturbed or behaved

aggressively against them it was 4 out of 5. Moreover, the mode for affection was 4 out of 5

(the children asked very often from the teacher and from each other for love, hugs and

affection) and the mode for aggressiveness was generally 0 out of 5, they were generally very

quiet and if someone disturbed them (for example, when their teacher took away the books of

two children), although they felt anxiety (clearly observed through their facial expressions),

they did not display any violent reactions.

Discussion

Obviously, the mental retardation and the physical impairments that characterize

children with Down syndrome do not permit them to participate in a full functional way in

the society. They face various difficulties such as limited linguistic abilities, memory and

concentration problems and an increased risk for various medical problems. All these

problems make difficult their adaptation to various environments and make them prone to

developing problematic behaviors and negative emotions. There is also high probability of

developing an anti-social personality. As far as our observational study is concerned, our

initial hypothesis (that children with Down syndrome have difficulties interacting with other

and display abnormal behaviors and significant impairment when disturbed) was not proven.

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BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 11

The children in our observational study seemed to interact with each other effectively, be

happy and calm and not to display aggressiveness or any other problematic behavior.

However, a lot of factors have to be taken into consideration. Firstly, our study has a

limited external validity, because we examined only a sample of 10 individuals with Down

syndrome and we do not know if our results can be applied to all children suffering from the

syndrome. Secondly, nine out of the ten subjects examined, had medium mental retardation

and therefore, it cannot be estimated or predicted how children with higher mental retardation

would behave. Thirdly, although we conducted our study in a natural setting (classroom) and

we observed how children with Down syndrome behave; we still do not know how these

children would interact with the other or behave in their homes or in other settings apart from

their schools. There is high probability that if we put the children with Down syndrome in

other settings that are less familiar to them and are full of people who they do not know, they

will behave differently.

Moreover, the behavioral patterns and the degree of interaction that children with

Down syndrome display are not due merely to their medical condition but also to the degree

of stimuli they get from their families and their environment. For instance, there are many

children with Down syndrome (in contrast to the children of our study) who do not attend

school and do not receive enough stimuli, social support or warmth from their families. If we

had made an observational study based on those children, we might have noticed different

behavioural patterns (for example anger rate at 4 out of 5 and happiness 1 out of 5. Thus,

there is not only the Down syndrome itself that has an impact on the general behavior of

children but several other factors as well. Therefore, before making any conclusions about the

results from our observational study, all these limitations and factors have to be taken into

account.

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Our suggestions for future observational studies on children with Down syndrome

include scientists investigating a larger sample of children instead of just only 10 participants,

include participants with various degrees of mental retardation (as in our study we examined

children with a moderate degree of mental retardation) and finally, conduct the study in

different environments (school, home, parks.etc).

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BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 13

References

Dykens, E. M. (2007). Psychiatric and behavioral disorders in persons with Down syndrome.

Mental Retardation and Developmental Disabilities, 13, 272- 278.

Guralnick, M. J. (2002). Involvement with peers: Comparisons between young children with

and without Down’s syndrome. Journal of Intellectual Disability Research, 45(5),

379- 393.

Iarocci, G., Reebye, P., & Virji-Babul, N. (2006). The learn at play program (LAPP):

Merging family, developmental research, early intervention, and policy goals for

children with Down syndrome. Journal of Policy and Practice in Intellectual

Disabilities, 3(1), 11-21.

Leshin, L. (2003). Trisomy 21: The story of Down syndrome. Retrieved February 25, 2011

from http://www.ds-health.com.

Medline Plus. (2011). Down syndrome. Retrieved February 25, 2011from

http://www.nlm.nih.gov/medlineplus/downsyndrome.html.

Medicine Net. (2011). What are the characteristic features and symptoms of Down

syndrome? Retrieved February 25, 2011 from

http://www.medicinenet.com/down_syndrome/page3.htm.

National Down Syndrome Society. (2011).What causes Down syndrome. Retrieved February

25, 2011 from http://www.ndss.org/index.php?

option=com_content&view=article&id=60:what-causes-ds&catid=35: about-down-

syndrome.

National Health System. (2011). Symptoms of Down’s syndrome. Retrieved February 25,

2011from http://www.nhs.uk/Conditions/Downs-syndrome/Pages/Symptoms.aspx.

Vicari, S. (2006). Motor development and neuropsychological patterns in persons with Down

syndrome. Behavior Genetics, 36(3), (doi: 10. 1037/a0021109).

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BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 14

Appendix A

Table used to rate emotions and behaviors

Observers’ Names:

Emotions / Behaviors CommentsSubjects

Rate: 0-5

1 2 3 4 5 6 7 8 9 10

Crying

Anger/ Frustration

Happiness

Affection

Self-play

Group-play

School:

Date:

Supervisor:

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BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 15

Appendix B

Informed Consent Form

You are asked to participate in a study aiming to gain insight in human behavior and

ethics. This research project is being conducted by the Hellenic American University students

Euridiki Damoulianou, Elina Korotkevica, and Kyriaki Alexiadi, who are majoring in

Psychology under the supervision of Professor Barbara Kondilis.

Children at this school are going to be observed in their natural environment under the

supervision of their teacher. They will not feel any distress at all and we will be as discreet as

possible.

All individual information gathered in this study will remain anonymous and

confidential and not identified with you at any way. Participation in this study is entirely

voluntary and the decision not to participate will not have any consequences. If you feel

uncomfortable, you may withdraw from the study at any time.

………………………….. …………. …………………………………………

Signature Date

…………………………….

Print Name

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BEHAVIOR IN CHILDREN WITH DOWN SYNDROME 16

Appendix C

Likert five-level item scale

1. No disturbance /emotion

2. Little disturbance /emotion

3. Moderate disturbance /emotion

4. High disturbance /emotion

5. Very high disturbance /emotion