An overview of the development of teenagers with Down syndrome (11-16 years)
Sue Buckley and Ben Sacks
Research studies demonstrate that young people with Down syndrome make significant progress in all areas of their development during their teenage years and into early adult life. For all young people, adolescence is a period of development which is characterised by a shift from dependence to independence. At 11 years, most young people are still largely supervised in the community and supported by parents in all aspects of their lives. By 18 years, most young people are quite independent in travelling, managing money, choosing friends and leisure interests, taking care of their personal daily needs and will be on the way to leaving the family home. This life period is also important for deciding on future occupation, life style and personal identity. It is also a period of significant physical, sexual and emotional development, when establishing close friendships, dating and partners become important. In this module it is argued that the physical, social and emotional needs of teenagers with Down syndrome are essentially the same as those of other teenagers and should be recognised as such. The priority for parents and teachers should be to support them through these changes with the goal of encouraging as much independence and personal control over their lives as possible. This is also important for developing their self esteem, personal identities and adjustment to the understanding of what having Down syndrome means for their adult lives. In addition, it is argued that teenagers with Down syndrome can continue to develop their basic skills in speech, language, literacy and numeracy and that teaching for these should continue through adolescence with age-appropriate adaptations to the content of teaching programmes.
Buckley SJ, Sacks B. An overview of the development of teenagers with Down syndrome (11-16 years). Down Syndrome Issues and Information. 2002.
doi:10.3104/9781903806043
Introduction
The aim of this module is to provide an overview of development during the period from eleven to sixteen
years and to assist the reader in integrating the material covered in the other DSii modules for this
age group. These modules each cover specific aspects of development, i.e. motor, social and behavioural,
speech and language, working memory, reading and numeracy, and family issues, in detail. The years 11
to 16 were chosen as these are the secondary school years in the UK system, with teenagers usually moving
to further education colleges at 17 years. However, much of the information in these modules will be
relevant to early adulthood (18-20 years).
This module is intended to help parents, families, teachers, speech and language therapists, and other
practitioners who work with young people in this age range. In the authors' experience, they all wish
to know what developmental and educational progress to expect for a teenager with Down syndrome
and how to help the teenager to progress as fast as possible.
These two main questions are addressed, within the context of the wide range of individual differences
in rates of development of young people with Down syndrome. In order to answer the question of how to
help teenagers to progress, the reasons for their particular developmental profile are outlined as far
as they are known, as this information should help to identify effective therapy and teaching strategies.
The question of how to help also leads to a discussion of the importance of balancing family needs with
the needs of the teenager with Down syndrome.
In the authors' view, in order to understand the ways in which having Down syndrome affects teenagers'
development it is necessary to consider what is known about the development of typically developing
young people. In the last thirty years, there have been considerable advances in our understanding of
the processes of development, particularly in the areas of social learning, cognition and language.
The greater our understanding of typical development, the easier it is to begin to understand the effects
of a disabling condition such as Down syndrome on the processes of development. As we identify the specific
effects of Down syndrome on development, we are in a better position to develop effective interventions
and teaching strategies.
The reasons for having age-appropriate expectations for teenagers with
Down syndrome
- Teenagers with Down syndrome are people first, and wish to lead full lives, like anyone
else
- Inclusion in schools and clubs is with same age peers, therefore expectations for social
skills and behaviour need to be age-appropriate
- Leisure interests, emotional and social needs tend to be age-appropriate
- Moving through life - secondary school, puberty, further education, work, partners, leaving
home - tends to be on the basis of age
- The challenge for parents and teachers is to treat the teenager in an age-appropriate manner,
to respect their age, encourage confidence, independence and self-esteem, and facilitate their
inclusion in the community
- The challenge for the teenager with Down syndrome, who may have limited speech, language
and cognitive skills for his or her age, is to participate in life in an age-appropriate way
This is the approach taken throughout the DSii modules. We draw on research into the development of
typically developing young people, the specific research into the development of young people with Down
syndrome and research that has evaluated effective interventions and teaching strategies, where they
exist.
To date, there is not a great deal of research into the development of teenagers with Down syndrome
or the issues which affect their progress. The authors have drawn on their own studies with teenagers
and their parents in Hampshire to inform these modules,[1,2,3] and included the information
from any other relevant published studies wherever possible.
Age-appropriate goals
In addition to using this information to understand the young people's developmental and learning difficulties,
we assess the major developmental achievements of typically developing young people over the age span
and consider the relevance of these for setting targets for teenagers with Down syndrome.
Teenagers with Down syndrome are people first, with the same rights to be
full citizens in the adult community in a few years time, and the same needs. The reader is reminded
that this view is expressed eloquently by a number of young adults with Down syndrome in the Living
with Down syndrome module in this series.[Dsii-01-01] If individuals with Down syndrome
are to be fully included in the community, as teenagers and as adults, it is important to recognise
that their place in society will be linked to their chronological age, and that this is right and appropriate.
As teenagers, young people with Down syndrome reach puberty at about the same age as other young people.
As teenagers they develop typical leisure interests and awareness of sexuality.[1,2,3] The
point being stressed is that we believe that it is important to recognise that the social and emotional
needs of teenagers and adults are age-appropriate. Their status in the community and their role in life
is mainly determined by their chronological age. Moving through school to college, work and independent
living will happen on the basis of their chronological age.
Therefore the goals for education and social development need to be considered within this framework,
and take account of the teenager's place in society. In the next section, the developmental achievements
for typically developing teenagers are discussed to provide a baseline for setting targets for teenagers
with Down syndrome across this life stage.
A time of significant progress
Many young people with Down syndrome make significant progress during their teenage years, as they begin
to take more responsibility, become more independent and apply learning to activities that they can
see as meaningful in their everyday lives.