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Living with Down syndrome: The new generation

Dr. Anne Jobling
Co-director Down Syndrome Research Program
Schonell Special Education Research Centre
The University of Queensland 4072
  Printed with the permission of the author.
MINDS-ESCAP/Millennium Symposium on Intellectual Disability
Nov. 28 - Dec. 2, 2000

Until recently, individuals born with Down syndrome have been considered severely handicapped. Community expectations about Down syndrome have frequently been formulated on mythical images from the past, and data collected from restrictive institutional environments. These expectations have shaped low expectations and limited opportunities for these individuals. Developmentally, educators and others have considered that the diagnosis meant an inability to achieve in aspects of regular education such as reading and writing and the popular impression of an affectionate, stubborn, good, happy and musical child still persists. But in fact individuals with Down syndrome have 'only one feature in common' and experts still debate the number of characteristics required to be described as 'Down syndrome'.
This paper will present data that challenges these assumptions and stereotypes presenting the 'new generation' of individuals with Down syndrome. The data was and is still being collected in a longitudinal study in Brisbane, Australia. The study commenced in 1977 when parents were being encouraged to take their babies home and early intervention reported the positive benefits of structured programming. Infants were recruited for the study and all of these still living are still being followed in 2000. Across the ages from infancy to young adulthood, the paper will data on a group of individuals who continue to develop beyond childhood, who can achieve at school, and who temperamentally are like other children. It will be contended that this 'new generation' require research to support this new developmental status with research work which is directed towards enriching and facilitating opportunities and challenges they undertake for themselves.
Until recently, individuals born with Down syndrome have been considered severely handicapped, and community expectations about Down syndrome have frequently been formulated on mythical images from the past, and from data collected in restrictive institutional environments. These images have shaped low expectations and limited opportunities for individuals with Down syndrome.
Developmentally, educators and others have considered that the diagnosis meant an inability to achieve in aspects of regular education such as reading and writing, and the popular impression was of an affectionate, stubborn, good, happy and musical child and in many areas this still persists. The image was of a syndrome with a single predictable outcome (Gunn, 1998).
But, individuals with Down syndrome have 'only one feature in common' and experts still debate the number of characteristics required to be described as 'Down syndrome'. Research has shown that there is both variability and variation amongst those with the syndrome, and to say that 'you see one you see them all' is false.
Now young people with Down syndrome are growing up in a community where new knowledge is dispelling these myths, where opportunities to meet their needs and aspirations can be developed, and where better health services have extended their lifespan - a 'new generation'.
This presentation will examine the ways in which the Down Syndrome Research Program (DSRP) at The University of Queensland over the last twenty three years has contributed to this "new generation".

The DSRP in the Schonell Special Education Research Centre at The University of Queensland has developed over two decades, and many of the young adults and adolescents who are involved in the various research projects now, were recruited when they were infants, while others have been recruited for specific projects.
Presently, we have 240 families with a child with Down syndrome (11 deaths) involved in the program with their children's birth dates ranging from 1973 to 1997.

Brief overview of number of families by dates of birth
Date of birth  1973-1975   1976-1978   1979-1997 
Since birth   48  
From early childhood      143
From school age 33    
Died 3 6 2
Lost 1 3 1
TOTAL 37 57* 146
* represents 91% of expected births in Brisbane.

The cytogenetic status of majority of the children is trisomy 21.
Over the last twenty three years several research themes have guided the program of research. These have been:

and in many ways the research program has developed with our families and as a response to our new knowledge and understanding of the syndrome.

First Major Study
For the foundation researchers, Andrews, Berry, Gunn and Price the first major study began in 1977. At this time there were many changes in practice regarding the care of infants with Down syndrome. Whereas it had been common practice to rear these children in institutions, during the 1970s parents were encouraged to take their children with Down syndrome home, and general health care had improved. Carr (1994) reports that the survival rates had improved markedly from 1976 due to these factors.
The early research from 1977 to 1979 investigated the communication between mothers and their babies with the aim to helping parents to communicate more effectively with their infants.
This study reported that infants showed delays in vocalizations, but looking-behaviour obeyed some of the turn-taking rules of conversation. The infants with Down syndrome looked more at their mothers than infants without DS, and regarded their mothers as a secure source of support from which they could explore their environments.
The study suggested that infants with Down syndrome may need to be taught referential looking to objects and others as well as the maintenance of eye contact.
Generally, the results demonstrated the impact of new approaches to health care, and that growing up in a supportive and loving family home could influence the progress of infants with Down syndrome. They also pointed to a growing need for information about the development of children with Down syndrome living in Australian homes. Clearly, there was a need for more accurate knowledge about the developmental progress of contemporary children with Down syndrome. The establishment in Brisbane of early intervention programs in 1979 further accentuated this need. These questions stimulated a new direction in the research, and studies which examined temperament, cognitive and motor development were commenced.
These early studies were continued and formed the basis for the development of a longitudinal study. The researchers considered longitudinal studies were a paramount means for understanding development and there was scant information on the progress of infants with Down syndrome who grew up within their family. A conscious decision was made not to include an intervention program as part of the research but rather to monitor the children's progress and health across their various educational environments.

The initial report (NH&MRC Report, 1983) examined the findings from a five year monitoring of social and cognitive development of 40 young children with Down syndrome and 26 younger siblings. Home life seemed to be a key to their successful progress as there were more opportunities for individual interactions, and support could be designed to meet individual needs. The stereotypical picture of a child with Down syndrome available to professionals was not accurate. The chromosomal anomaly was only a part of the developmental picture.
The study of these children, with others added, formed an almost complete population based sample (Crombie and Gunn, 1998), and many are now young adults. The course of their development has been monitored during infancy, childhood and the pre-adolescent years, and this continues into adulthood. It took a number of years to recruit this sample and in the ensuing years some children moved away from Brisbane (although, where possible, we keep in touch) and some have died. As the variability in the Down syndrome population limits the value of the conclusions drawn from samples with high attrition rates, the fostering of our relationships with families involved in the research is an integral and vital aspect of our work. Newsletters and birthday greetings are an important part of our sample retention strategies.
Although, many smaller and short term studies have been undertaken : screening for eye problems (refractive errors); infant behaviour in a strange situation; affective response to repeated events; measures of resting metabolic rate; counting and reading abilities; financial costs; play interactions between siblings at home; teaching and instructional behaviours and self-concept. In this section of the paper I will focus on 5 research themes within the research program: Temperament; Cognitive Progress; Motor Development; Siblings and Families and Self-regulation.
(A list of publications is available for those who wish to see the extent of the research program over its twenty three years).

Studies of temperament were initially undertaken by Dr Pat Gunn and, more recently, they have been continued by Dr Monica Cuskelly.

Is there a classical temperament profile?
To investigate this question two groups were considered: 37 children with Down syndrome and 13 of their siblings. Infant and Toddler Temperament Scales were used with mothers. The study reported that there was no one classic temperament of infants and toddlers with Down syndrome as there were both easy and difficult babies and toddlers. Toddlers with Down syndrome demonstrated the same range of temperament characteristics as other children.

Do children with Down syndrome become more difficult as they grow older?
To investigate this question a pre-adolescent group and another group of adolescents 12 to 14.6 years were involved. The assessment instruments used were Behavioural Problem Checklist and Middle Childhood Temperament Questionnaire for mothers and teachers. The study reported that there were no age differences, no decline in behaviours and no gender differences. However, mothers and teachers viewed the children somewhat differently but both suggested that behavioural expectation should remain high.

Cognitive Progress
This work was undertaken by Dr Mary Crombie in conjunction with Dr Pat Gunn. The research, which took several years to complete, involved two cohorts of children who represented an almost complete sample of children born in Brisbane during the study years. Cohort 1 consisted of children born 1973, 1974 and 1975 Cohort 2 consisted of children born 1976 (May to Dec.) 1977 and 1978. Cohort 1 children had limited access to programs of early intervention while Cohort 2 children had extensive services across a wide range of early intervention programs. All the children were home-reared except one boy who was hospitalized at 2 years. The cognitive assessments at 11, 12, 13 and 14 years used the Stanford Binet L-M and Hiskey Nebraska and Adaptive Behaviour measures and family and health data were also collected. The study aimed to chart the developmental progress of these children and in part to examine the long-term effects of early intervention.
The study reported no evidence of a permanent cognitive plateau.
There were no major differences between the two cohorts with respect to health history, family characteristics, nor in the effects of early intervention.
In both cohorts there was wide variation in the developmental profiles which increase over time.
Three clusters of developmental trajectories could be identified.
Health and medical problems were important factor in progress and could be related to slower developmental trajectories.
Adaptative behaviour levels indicated all children were educable.

Crombie (1994) concluded:

"there is a need for research into effective ways of providing early intervention programs but this study suggests the need to recognize the futility of adopting a 'one-shot 'approach. Even effective early intervention will not pay off in the long term if we do not capitalize on its foundations" p.206.
The viewpoint expressed in this statement has been supported by Gibson (1991; 1996) and Hayes (1991) as they referred to 'willy-nilly' approaches and 'fads and fashions' in early intervention programs.

Motor Development
The longitudinal study of motor development was undertaken by Dr Anne Jobling with Dr Pat Gunn. This was a 10 year study of school aged children with Down syndrome. Assessments were undertaken at 10, 12, 14, and 16 years using the Bruninks Oseretsky Test of Motor Proficiency.
The study reported that progress could be represented by two clusters of proficiency - one with high proficiency in 'Run-Agility' and the other with high proficiency in 'Visual Motor Control'. Both clusters showed low scores in balance.
The development of motor skill proficiency continued from 10 to 16 years, but most of the progress was achieved between 10 and 12 years. Although there were profile variations, strengths and weaknesses emerged especially a low proficiency in balance. Gender differences reflected other Australian school-aged children with boys being more proficient in gross motor and girls in fine motor skills.
Physical Education programs in the senior years of schooling seemed to fail to build on earlier progress and at 12 years, when proficiency was emerging, they did not capitalise with focused skill development programs.
It was suggested that there was a need for continual physical therapy involvement in school to assist with the remediation of biomechanical problems observed, especially those related to posture and lower limb pathologies.

Siblings and Families
In the 1980s there was a natural progression to expand the themes of the research to the siblings as many families were concerned about the possible negative effects the child with a disability might have on the other children in the family.
Studies examined teaching and caregiving behaviour of siblings and changes in these over time as well as the adjustment problems of siblings. These studies have been primarily undertaken by Dr Monica Cuskelly, with Dr Pat Gunn and later included Professor Alan Hayes.
Initially there were two studies undertaken by Dr Cuskelly. The first involved 70 families with a child with Down syndrome and 67 families with normally developing children. The second study involved 28 families with a child with Down syndrome and 28 families as a comparison with children of similar age. Reports and interviews were conducted with mothers, fathers and the children.
These studies reported that having a brother or sister with Down syndrome does not adversely affect the siblings. There may be some initial adjustment but problems were not inevitable. The relationship between siblings was better with more affectionate behaviour and less aggression eg. fighting and name calling.
Previous research had suggested that older female siblings may assume a 'burden of care' due to more household chores and caring roles, but this did not seem to be the case. However, girls can be more vulnerable than boys and this requires further investigation. Popular speculation that siblings of those with Down syndrome are at greater risk of developing behavioural problems than comparison groups was not seen to be inevitable.
Professor Alan Hayes was involved in the major study of how families accommodate to having family member with Down syndrome. The connections between employment and other parenting decisions and the presence of a child with Down syndrome. Families with a child with Down syndrome are matched with a comparison family, and both mothers and fathers are interviewed. Two New Zealand PhD students were also been involved in this research.
Preliminary data presented by Dr Monica Cuskelly at a Canadian conference showed that mothers of children with Down syndrome report significantly more stress. Mothers of children with Down syndrome also report a greater and wider range of supports, both individual and services and where there is more support there is less stress. Mothers who are at home reported more ill-health and for mothers with a child with Down syndrome it was suggested that the thwarted desire to work may impact negatively on a mother's health.

Since 1977, examinations of the various aspects of development (temperament, cognition, and motor) and the theoretical importance of delay/difference interpretations have led to our interest in the development of self-regulatory behaviour. This has now become a major theme in our research. Dr Monica Cuskelly and Dr Anne Jobling plan to undertake these studies. Presently, two aspects of self-regulation, mastery motivation and compliance and delay of gratification are being investigated by two PhD students and a small study of health behaviours has been funded.
Delay of gratification studies - Zhang & Cuskelly (children) and Cuskelly, Einam and Jobling (young adults).
Although, adults with intellectual disabilities experience more health problems than do the general population, no studies have previously investigated the relationship between knowledge and behaviour as they relate to self-management of health in persons with Down syndrome. It is considered that with an understanding of how knowledge and behaviour are used to manage health decision, it may be possible that many of these could be prevented by appropriate self-managed intervention strategies.
So a study investigated the health and safety knowledge, including an understanding of contamination and contagion, and health promoting behaviours of a group of adolescents with Down syndrome. The study gathered information about health, hygiene and safety knowledge of these adolescents at home to establish areas of health knowledge and health related behaviours which are problematic for them as individuals and/ or as a group. Participants in this study were 45 adolescents with Down Syndrome from 15 to 18 years. Another study, commenced recently, is examining the factors that may influence eating and physical activity behaviours in this same population with their siblings as comparisons.

So what has this research contributed to this new generation of people with Down syndrome?
In regard to this program of research Wishart (1998) stated "the underlying motivation has always been the same: to try to find ways of helping children with Down syndrome and their families to get the most out of life" p.358.

First, developmentally, the DSRP has shown that there is great variability and variation in the development of individuals with Down syndrome. It cannot be said that when "you've seen one, you've seen them all".
The program of research has been shown this across the developmental domains of adaptive behaviour, cognition, motor skill acquisition and personality and temperament characteristics (Gunn, 1985; Crombie, 1994; Jobling, 1995). Variability (scope of developmental change) and variation (heterogeneity) are both within a child with Down syndrome and also between children with Down syndrome. There is no evidence of long term peaks or declines and, contrary to the myths, we do not know their achievement potential. We do know that they are slower achievers and need opportunities and challenges throughout their lives.

Second, in educational planning, the DSRP has shown that early intervention programs should be a part of the child's total education program rather than a 'quick fix'. Perhaps we need to concentrate in the early years on behaviours that are known to facilitate learning such as attention, task persistence, mastery motivation, compliance and social interactional behaviours rather than on specifically related activities in developmental domains such as speech, cognition and motor skills.
The school curriculum should provide scope for continuous adaptation to suit individual needs. 'Watered down' academic curriculum content in favour of lifeskills reflects a 'topdown' approach to planning and fails to recognise the developmental status of the children as individuals. Continuity and a continuous focus on the development of literacy and numeracy skills in contrast to the many 'functional' program approaches are needed. Misguided good intentions at times have lead to the exclusion of formal literacy instruction for older children with Down syndrome in schools (Farrell & Elkins,1994). These educational opportunities should be extended beyond current school leaving ages, with a broader focus than just life-skills and work preparation. LATCH-ON has provided the research team with an opportunity to plan and implement a literacy program with young adults in a University environment, and a broadening approach to literacy is being developed (Moni & Jobling, 2000). We see the need for a flexible range of community placement options to be made available with only some of these related to work. Importantly, others need to relate to recreation activities, friendships and creative experiences.

Third, in the area of health care the DSRP has shown that there is a need for consistent and continual monitoring throughout childhood and into adulthood, and that health education needs to be linked to an active lifestyle. Attention needs to be paid to problems associated with movement so that activities can be participated in without unnecessary injury (Jobling, 2001).

Fourth, within the school environments, the DSRP is investigating behavioural expectations that enhance learning. It is considered that teaching and learning practices that act immediately and indiscriminately may further handicap these children. Individuals with Down syndrome need to become independent learners who are motivated to gain mastery of a range of skills, who can self-initiate and who have been taught and assisted to develop strategies that they can use to further facilitate their own learning. Our studies in self-regulation are examining these some of these issues.

This program of research has questioned much of the typological thinking with regard to the development of persons with Down syndrome. The results are based on longitudinal and cross -sectional studies which have been 'carefully designed and meticulously controlled' (Wishart 1998 pg.358) and have challenged the sterotypical picture often presented to parents by professionals. The research program intends to continue these endeavours.
Over the last twenty three years, this research program has had a dedicated research team. Chief investigators, research assistants and students (too numerous to mention) have assisted us with many aspects of the program and for this we say thank you. The community has also assisted in many ways. University grant schemes (National Health and Medical Research Council and Australian Research Council) have funded many of our programs. A University Trust Fund has been established by the family of Michael Cameron (one of the children who died at age 10 years) to assist us with research into Down syndrome. The program of research has been recognized world-wide and our contact with the international research community is of constant encouragement to us.
Finally, and most importantly, we owe an enormous debt of gratitude to our families and their children with Down syndrome as well as the many comparison families who have so willingly and patiently participated in all the assessments, visits, questionnaires and other experimental experiences. They are indeed a unique group of individuals.

References in this text and list of other publications from this Program of Research are available from Dr Anne Jobling, Schonell Special Education Research Centre, The University of Queensland Brisbane, Australia 4072.

Revised: January 26, 2003.