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Down's Syndrome and Communication with Others: A Case Study
Simon Fraser University
Copyright © 2004|
Reproduced with the permission of the author.
As seen in people with developmental disabilities, interpersonal communications often differ from those of their "normal" counterparts, and it has been reported that children with Down's syndrome typically have difficulties interacting with peers (Guralnick, 2002). However, much of the research on language and communications in people with Down's syndrome have focussed on young people, especially youth and children. Very few studies have focussed on communications in adults with Down's syndrome, thus, a case study involving an observation of an adult with Down's syndrome in a group home setting was performed to investigate interpersonal communication skills and/or deficits in people with Down' syndrome, compare the ways in which they communicate with others (i.e. caregivers, teachers, social workers, other people with Down's syndrome and other developmental disabilities, etc.) and problems associated with communications and/or inappropriate communications. Some of the findings will be compared with those from the current literature. It is expected that the way in the subject communicates with others will differ, depending on whom they are interacting with and the context. It is also expected that some setting are more likely to promote inappropriate responses in communication than others.
Resulting from a chromosomal defect, Down's syndrome is a developmental abnormality that is characterized by mental retardation. Down's syndrome is marked by several distinct and visible features to varying degrees, such as a small skull, large tongue protruding from the mouth, sloping of eyebrows, small fifth finger, and an unusual crease across the palm (Mash & Wolfe, 2003). In most cases of Down's syndrome, a pair of the 21st chromosome from the mother fails to separate during meiosis (failure to separate pairs of chromosome is know as nondisjunction) before joining with the 21st chromosome from the father, resulting in an extra 21st chromosome (Mash & Wolfe, 2002); thus, Down's syndrome is also known as trisomy 21.
Although Down's syndrome is the most common chromosomal disorder (Mash & Wolfe, 2002; Vaughn et al., 2003), it occurs in about one in 700 live births (Vaughn et al., 2003). The probability of such nondisjunction (and thus Down's syndrome) increases with maternal age (Mash & Wolfe, 2002).
Currently, the chromosomal causes of mental retardation in Down's syndrome is not well known (Mash & Wolfe, 2002). However, it has been suggested that trisomy 21 causes developmental instabilities that result in abnormal brain development (Blum-Hoffman et al., 1987, as cited in Mash & Wolfe, 2002). As a result of mental retardation, language development is affected. Consequently, communications will also be affected and this problem in adults will be the focus of this study.
The main participant in this study was Sue (not her real name), a 39-year old female with Down's syndrome, who is currently a resident in a group home for people with developmental disabilities. This investigation is a case study that involved only observation.
Prior to the observations, the group home director, caretaker, and residents were all informed about the study and were invited to ask questions if interested. All residents were informed that they would remain anonymous and may withdraw from the study at anytime.
During the study, Sue was observed for five hours per week, for three weeks. Within the 15 hours (total) of observation, Sue's patterns of communication and social interactions in a variety of activities were recorded by taking field notes. Because residents of the group home consists of several people with a variety of disorders, there was an opportunity to compare the patterns of communication in Down's syndrome with those of other disabilities. One other resident also has Down's syndrome, who offered the opportunity to study the ways in which people with Down's syndrome interacts with others with the same disability. In addition, a schizophrenic resident offered a chance to compare patterns of communication. The exact type of intellectual disabilities or mental illnesses in other residents were unknown. As an observer, I had no intentions to interact the with Sue unless questions are asked, which I would answer to the best of my knowledge. Furthermore, the main subject was not interviewed because I was not sure of the appropriateness of questions pertaining to Down's syndrome.
The observation had revealed many abilities and problems pertaining to interpersonal communications and the use of language. As a high functioning subject (according to the caretaker), Sue, appeared to possess social skills that were superior to those of the other members of the group home as she was able to hold conversations with many people (caretaker, other group home members if possible, and myself). Interestingly, the only other group home member who can speak at an equal level of ability was a male resident who also had Down's syndrome. Conversations were rarely observed in remaining group home residents (one was schizophrenic while the others had unknown conditions or unidentified forms of mental retardation).
Other abilities in interpersonal communications were observed, and Sue appeared to possess the capability to initiate conversations and ask questions. In addition, the subject was also able to communicate by writing and thus, Sue had the responsibility of writing the grocery list for the group home. Furthermore, the subject was able to use writing to communicate with an individual who was unable to speak, further illustrating her social abilities.
In addition to the subject's abilities, Sue appears to have an understanding of social appropriateness of actions. Such an understanding was first illustrated during a dinner time in which I was unfortunate enough to be seated next to the schizophrenic who was rude enough to fart suddenly. I informed the caretaker that if it happens once more, I would exchange seats with him and consequently, Sue wanted everyone to know that she did not fart. Other reactions to the incident, which included laughing along with the caretaker and myself, had provided further indication of her understanding of social appropriateness of certain acts (at least for farting). As compared to the other group home residents, the schizophrenic person (who had farted) and the other members, have failed to exhibit any reactions to the incident; the "guilty party" made no apologies, and all other produced no laughter, comments, etc. (the other resident with Down's syndrome was out of town that night).
Sue's reactions to the "farting episode" may also be a sign of consideration for other people, which appeared to be lacking in the schizophrenic (as demonstrated by inappropriate farting) and others with unidentified disabilities. Consideration for others was also demonstrated in her apology for emptying and washing a coffee maker before I had the opportunity to pour myself a cup. Sue had also demonstrated consideration for others when she was asked by the caretaker: "Should I chase Alvenh with a baseball bat and beat him up?" Sue had responded with a simple "no" and laughed. However, the other members (excluding the other resident with Down's syndrome who has away that day) no reactions to the ridiculous question.
I have also observed from both the "farting episode" and the response to the caretaker's ridiculous question that Sue was able to laugh appropriately with both the caretaker and myself in response to hilarious situations. No inappropriate laugher had been observed. The other group home residents without Down's syndrome had display no emotions in response to hilarious situations.
Despite Sue's abilities in communications, many problems were also observed in interactions with other people. The most obvious problem involved speech production. Sue appeared to have difficulties enunciating words and thus, spoken words were extremely difficult to understand. In addition, the subject hesitates in speech. This problem may be due to the fact the Sue has difficulties finding the right words to speak.
Problems were also observed in receptive communications. Sue often experiences difficulties in understanding questions, thus the caretaker often had to repeat himself when questions were asked. Upon first the caretaker's first attempts, Sue often appears confused.
Inappropriate patterns of communications were also observed. Although Sue was able to initiate conversations, I had been warned by the caretaker that Sue has a tendency to ask inappropriate questions and be repetitive in certain topics. For instance, during the first day of observation, Sue had asked me whether or not I have a wife. After a lengthy discussion regarding why I'm not married, Sue began to discuss why the caretaker also had no wife. The caretaker suggested changing the topic. This inappropriate discussion about the caretaker occurred again in the next observation in the following week.
Despite such inappropriate conversations, it is interesting to note that occasionally, Sue has a tendency to use pronouns in conversation without defining or using actual nouns first. For instance, in the inappropriate conversation previously discussed, Sue had told me that the caretaker has no wife because he's too young to marry "her", without defining whom the pronoun "her" refers to.
Another interesting pattern of communication that was observed was the use of hand gestures, which subject often used in conjunction with spoken language. According to the caretaker, Sue often relies on gestures to facilitate understanding to speech and as observed, the caretaker often had to use hand signals in asking questions to help Sue comprehend what was said. As observed, interpersonal communications was reduced, and Sue would not be engaged in conversations when fewer gestures were used. Also, communication involves reciprocation, and they amount of interaction appeared to be related to the social abilities of the other person. For instance, level of interaction between the subject and partner was greatest when the person was the caretaker, followed by the other person with Down's syndrome, and finally, interactions with the remaining residents were infrequent.
Through observation, I have also discovered that Sue tends to answer questions by using simple one or two word answers, or incomplete sentences. For instance, while the caretaker was interacting with the whole group of residents, he had asked Sue if she would like to listen to the "Smashing Pumpkins", in which she replied: "That's gross." After being told by the other resident with Down's syndrome that the "Smashing Pumpkins" is a band, she had replied with a simple "no".
As previously suggested by Guralnick (2002), children with Down's syndrome typically have difficulties interacting with peers and with all other children with mild intellectual disabilities, they "...are at considerable risk of becoming socially isolated from their peers in school, home and community settings" (pp. 379). However, as I have observed, this does not appear to be the case for an adult with Down's syndrome. As compared to adults with other forms of metal illnesses or disabilities, people with Down's syndrome appear to be quite involved in a social sense. Furthermore, social isolation is not always the case for children either, and as reported by Mundy et al. (1988), children with Down's syndrome do have strong willingness to interact socially. It has also been discovered in my observation that adults with Down's syndrome also have willingness to interact socially.
For people with Down's syndrome, speech is production is difficult, and many problems in communications for children with Down's syndrome have been linked to difficulties with speech production and grammar usage (Buckley, 1999). Many children with Down's syndrome discover that "...they are more likely to be understood if they use only two and three word utterances [allowing] them to be recognized" (Bluckley, 1999, pp. 115); however, they are less likely to be included in conversations given their difficulties in speech production (Buckley 1999).
Such telegraphic speech persists into adulthood, as I have observed. This speech in adulthood, as observed, is often lacking in grammar, just like in children and teens with Down's syndrome (Buckley, 1999). The development of grammar lags behind that of vocabulary (Buckley, 1999), and it appears that by adulthood, they are unable to catch-up in grammar development by the time they have reached the limit of development. Buckley (1999) has suggested that due this developmental lag, children's risk of being excluded in conversations will continue "...right through to adult life" (pp. 115); I have observed the contrary, and difficulties in speech production did not appear to hinder social involvement.
Studies (i.e. Caselli et al., 1998) have also shown that people with Down's syndrome tend to favour gesture communications over spoken language. Like most normal infants, most children with Down's syndrome will begin to imitate gestures as early as 18 months of age (Buckley, 1999). Children with Down's syndrome have difficulties producing spoken words, yet, they are able to continue learning gestures naturally like their normal counterparts (Buckley, 1999); thus, gestures are frequently used to make comments, requests and acknowledgements from an early age (Chan & Iacono, 2001) to convey the message when their speech is not understood or do not have the works available (Buckley, 1999). From my observations, I have discovered that preference for communications by gesturing its functions persists into adulthood and it is used for the same reasons as suggested by Buckley (1999). Because the use of the continued use of gestures, it is important to allow the use of both spoken and signed communications from an early age, as studies have shown that when both forms of communications are taken into consideration, early language development in children with Down's syndrome is boosted and tend to have larger vocabularies (Clibbens et al., 2002).
It is also important to note that the use of sign language in communication serves different functions (von Tetzchner & Martinsen, 1992, as cited in Clibbens et al., 2002). In people with motor disabilities who are unable to express themselves vocally, signs serve an expressive function; in people who use signs to make themselves understood or to understand others, signs serve a supportive function; in people who use mainly signs to communicate throughout their lives, sign language is used as an alternative language (von Tetzchner & Martinsen, 1992, as cited in Clibbens et al., 2002). For people with Down's syndrome, sign language is used as support to assist speech development (Clibbens et al., 2002) and to increase intelligibility of speech (Powell & Clibbens, 1994). Furthermore, Clibbens et al. (2002) suggests that "...there may by continued advantages in sign use, including more effective communication with those who are not sign users themselves" (pp. 311), and this appeared to be true on the basis of my observations as I have noted that the amount of vocal communications is related to the amount to gestures that are used. On the other hand, the finding might have coincided during a time when interpersonal communications of any form is not necessary or appropriate (i.e. watching television). Also, being around people who don't talk elicits no need to for conversations.
Humour and laughter often occurs in interpersonal interactions, and according to a study by Reddy and colleagues (2002), humour is often understood in children with Down's syndrome and appropriate laughter can occur. When Reddy et al. (2002) compared the understanding of humour and laughter sharing in children with Down's syndrome to that of autistic children, they have found that those with Down's syndrome are able to laugh appropriately to funny faces or socially inappropriate acts while in autistic children, shared laughter was rare. I have also observed the ability to understand humour and share laughter appropriately in the adult subject with Down's syndrome, which was not observed in the others.
It is important to be cautious in generalizing the findings of this case study, and one should keep in mind that all findings are based on a single subject, who is not representative of the population of adults with Down's syndrome in general. Furthermore, individual differences, which can affect results of studies, were not taken into consideration.
Other problems with generalizing the results of this study stems from the fact that the patterns of communications were observed in a group home setting in which the subject would be around people with whom she interacts on a daily basis. The problems with interpersonal communications reported in literature involved interactions with "normal" people, such as inclusive school environments. In addition, my presence at the group home may be an odd situation for the subject, which can result in communication patterns that are not usually observed.
Because the observation was limited to a group home environment where activities are routine, I was unable to observe communications in a variety of settings for comparison. Also, inappropriate communications were hardly observed.
Contrary to findings, the adult subject in this study appeared to possess many social abilities and is able to hold conversations. However, it can't be concluded for sure if this is the case for all adults until more studies are performed. Other variables, such as intelligence and personality may be related to social abilities and should be examined in future studies. In addition, the social abilities of the subject may be simply due to the fact the an adult is more cognitively developed that their younger counterparts.
Given that there children with Down's syndrome have deficits to varying degrees (Gularnick & Groom, 1990), longitudinal studies could be performed to see if abilities and/or deficits at a younger age can be used to predict social abilities in adulthood.
Given that this study is a single participant project with it's setting limited to a group home (and other associated limitations), most findings are inconclusive in that they may or may not apply to most people with Down's syndrome.
As with children, speech and communications by people with Down's syndrome differ from that of their "normal" counterparts in that they have difficulties with speech production, problems with grammar, intelligibility and greater use of signs and short "telegraphic" utterances. Because communication requires a partner, amount of interpersonal communication was appeared to be affected by the social abilities of the other person.
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