From adolescence to adulthood
Sue Buckley and Ben Sacks
Abstract - In this article, we provide a brief review of published studies which may tell us what sort of achievements and lifestyles are possible for children with Down syndrome, and comment on the social, educational and parental influences on their development.
Keywords - Down Syndrome, Adolescents, Adults
At the Centre, we are expanding both our practical work and research programme to address the needs of teenagers and young adults and we include some information on this in the article. These developments are in response to the concerns of local parents, who are concerned at the quality and quantity of facilities for school leavers.
Growing upFor the majority of young people the teenage years are characterised by increasing independence and autonomy. They become more and more capable of running all aspects of their own lives and less and less dependent on their families.
In turn, their families become less tied down by the daily responsibilities of child care and parents can begin to have more time for themselves.
IndependenceBy their early teens, most young people will be completely independent in terms of personal hygiene and dressing appropriately. They will be able to make simple meals, travel independently, handle money for their everyday needs and be able to stay alone in their home, at least during the day.
SexualityThis is a time of rapid growth, when young people are often very self-conscious about their size, appearance and perceived attractiveness. It is also the time of puberty and reaching sexual maturity, when boyfriends and girlfriends become important.
FriendsTeenagers will have their own friends and leisure activities, choosing where they go out, when and with whom. They will no longer wish to go everywhere with Mum and Dad. Friends and the teenage culture will become a powerful influence and the values of the family may become less powerful. Friendships are important and those who are lonely and isolated will probably be rather unhappy and at risk of depression or other problems.
IdentityAdolescence is a time for experimenting, trying out different fashions, interests, music and leisure pursuits. Role models are important and young people are often powerfully influenced by significant others in their lives at this time, particularly teachers who may shape career interests, and media stars. It is a time for making choices about the sort of person you want to be and establishing a realistic self-concept. Self-confidence and positive self-esteem need to develop as they are known to be important in protecting adults from depression in times of stress.
WorkThe choices that students begin to make as they progress through secondary education lead to career choices. They begin to decide on where their skills and work interests lie. The work that we do tends to be the biggest influence on our lives as adults, influencing our identity, our status in society, how much we can earn, where we live and our circle of friends.
Leaving homeBy the end of the teenage years, many young people have left home for college or for work even though they will not set up completely independent homes until into their twenties.
Early adult lifeDuring their twenties, most young people will be settled in work and financially independent of their parents, they will have their own home, often buying it by this time, many will have permanent partners or be married and many will become parents.
What about young people with Down syndrome?What is life like for adolescents with Down syndrome? How does it differ from the experience of teenagers who do not have Down syndrome? Does life differ for their families at this life stage?
These were some of the questions that we asked some ten years ago when we carried out a survey of all the young people from 11 to 17 in the county of Hampshire, England. Ninety families took part in this survey and provided us with a great deal of detailed information on their lives and the everyday experiences of their son or daughter.
We published the findings of this survey in 1987 in a book which is still available from the Trust (1) and discussed the implications of the findings in an article in this newsletter in 1992 (2). We carried out this survey because there was very little information available on the development of teenagers with Down syndrome at that time. During the previous twenty years, research on children and their families had increased, but almost nothing had been published on adolescents.
UK ResearchIn 1982, Janet Carr published the first information on a group of teenagers with Down syndrome in South London. She had been studying them since their birth in 1963-64 and in 1995 she published a book entitled "Down syndrome: Children growing up" which discusses the progress of the group to 21 years of age(3).
In 1988, Billie Shepperdson published "Growing up with Down Syndrome" (4), a book which reports the findings of her research with two groups of children born in South Wales, the first group born in 1964-66 and the second in 1973-74. In 1990-91, she visited them again when the younger group were teenagers and the older group were in their twenties.
All these studies have similar conclusions if we look to them for answers to the question set at the beginning of this section. All the studies identify the wide range of individual differences that they observed in the groups of young people that they studied. Many of these variations stress the individual personalities of the young people and the effects of the individual families and the life situations that they have grown up in on their development, just as these factors influence all children's development.
However, all the studies also identify a minority of some 15% of young people who have more serious developmental delays than the majority, often associated with health problems and behaviour problems. These young people are likely to always be dependent on assistance in their daily lives and the general discussion in the rest of the article does not really address their needs. This does not reflect a lack of concern for this group of young people. We advise many families of more delayed children at the Centre and will include discussion of their needs in the next issue of the Newsletter. The focus of this article is on the other 85%, most of whom could actually be much more independent and lead much more fulfilling lives if we had better services and higher expectations for them.
Most of the teenagers and young adults with Down syndrome had become completely self-sufficient in personal care and hygiene, though often later than they could have done if parents had given more explicit attention to what was age appropriate in their early teens, for example, teaching them to wash their own hair, run the bath and cut their nails rather than having these things done for them.
Only a minority had achieved complete independence in or out of the home. Very few parents would leave their young person alone overnight, for example, or for more than a short time during the day and very few young people could cook themselves a meal, travel completely independently, take care of their own money and do their own shopping.
Very few had work, and when they did it was part-time or sheltered work. In Janet Carr's group of 41 twenty-one year olds, only 4 had even this type of work. Very few had left home to be more independent rather than move to residential care, and very few had meaningful relationships, partners or spouses.
Maybe of most concern in the teenage years, is the fact that most of these young people had very restricted social lives and friendships if compared to typical teenagers, despite having age appropriate interests in areas such as pop music, football, TV.
Families viewsIn all these studies, families tended to be very positive about their young person with Down syndrome. They were much loved individuals in their own right, so, although families still had more daily care responsibilities as the young people were not very independent, the majority did not seem to resent this. They had become successful at adjusting to meeting the needs of this special child and leading an ordinary family life, as the Manchester studies by Elizabeth Byrne and Cliff Cunningham (5) indicate. Most families hoped that their young person would have the opportunity for meaningful daytime employment and a home of their own, but could not feel confident that services available were going to be able to make that a reality.
Opportunities and expectationsIt must be stressed that we do not believe that these findings tell us what young people with Down syndrome are capable of achieving. Most of these young people had only attended segregated special schools and expectations for their achievements would have been very low.
Their parents would have had very little support or the benefit of early intervention. In our 1987 book, we also discussed the probable negative effect of being `bussed' to a special school from three to nineteen years on the opportunity to learn to travel independently, to cross roads, to catch buses, to use money and to make friends.
Have things changed?In Hampshire, we are planning to see how much progress has been made in the last ten years by repeating our survey with current teenagers and finding out how the young people that we visited last time are progressing now that they are in their twenties. While only a minority of our current teenagers are in mainstream school, we expect that the curriculum and the expectations in the special schools will have changed for the better. Very few of the 1980's group could read or add money, so we hope that we will record improvements in academic and social skills. We also think that social attitudes have changed and that there are more opportunities in the community for our teenagers now.
Experience in other countries suggests that mainstreaming does have a significant effect on outcome. A study of ten young people in Chicago aged 21 to 37 years, whose lives are being followed over five years (6), reports that all of them have work, seven part-time and three full-time. All these young people were mainstreamed throughout their school career. Workplaces include grocery stores, a laundry, a department store, a warehouse, a school, a beauty shop, a museum, a day-care centre and a mailroom. Two of them had two part-time jobs. During the first three years of the study only one young man had been out of work for any length of time.
These young people also report more ordinary social lives than those in the English studies. Six have occasional dates with others of the opposite sex and only one stated that her parents would not let her date. The young people could talk about how they would make and keep friends, for example "have a smile on your face", "be yourself", "get together often" "treat them nicely" and "tell about yourself".
They could also talk about themselves, though this proved difficult for some. They used terms such as "friendly", "outgoing", "smart" "handsome", "non-argumentative", "short legs", "joker", "gentle" and "actress" to describe themselves.
When they were asked what Down syndrome meant to them, their answers included "being born with it and having a learning disability, "a handicap and I carry too much weight and cannot reach places", "slower", "having problems" and "I'm special".
The ten adults in this study are volunteers and this is a small sample so we do not know how representative they are of young adults with Down syndrome in Chicago. However, we do know that there are not many towns or cities in the UK where 10 adults with Down syndrome have regular work. In the UK, we lag behind many other countries in developing work opportunities for people with developmental disabilities and it is not just training that matters, but also the experience, attitudes and provisions of the rest of the community.
Last year, Sue visited Madison, Wisconsin in the USA and while there she looked at the school system. Madison has not had a segregated school site since 1976. Sue visited a high school and talked with the staff team who provided the learning support for the students at the school that in this country would be described as having severe learning difficulties.
When these students join the high school at fourteen years old, the staff plan an individual programme with each student and his or her parents which is designed to ensure that, when they leave the school system at twenty-one, they will be living independently of the family and have a job to go to each day. This independent living and work will be supported as necessary, so some will be working without support, others with a job coach or a `buddy' at the work place, or even sharing a job with an able-bodied person as a permanent arrangement. There are vocational teachers as well as assistants to support the high school teachers in achieving this.
When the staff knew that I had a special interest in children with Down syndrome, they told me that the majority had proper jobs in Madison for which they earned the usual wages. I attended a conference while I was there and at the conference centre a young lady with Down syndrome was featured on the board where they displayed the "staff achievers of the month". In Madison, they would say that several factors have created this change, mainstreaming in education being the most important because is has led to more socially mature, skilled and confident young people with Down syndrome and because it has changed the attitudes of the generation who are now employers in the city. The other factors are well resourced education and vocational training programmes and very low unemployment in the area.
Parents rolesWhile we can consider the effect that the social attitudes and opportunities in our communities and the schooling available to our children will influence their development significantly, most of us would agree that families play a very major role in shaping their development as well.
Thinking ahead and recognising that we need to always be encouraging the skills and the social opportunities that will lead to independence is not always easy. It is easy to do too much for our children without realising that we are underestimating their ability to learn to do things for themselves; many steps towards independence involve taking risks and letting go.
Our personal experience has shown us how much progress many young people with Down syndrome make in their twenties and the contribution that leaving home can make. The more independence and control that any of us have over our lives, the more our self-esteem grows and we are able to take on a more adult and confident identity. Having a job and a girlfriend or boy friend can have also have a very positive effect on self-identity and self-esteem. Both can also be a stimulus for learning new skills, as we found out when Sue's daughter Roberta first met Andrew and promptly learned to use the telephone in order to fix up dates!
A very thought provoking book has been written by Marilyn Trainer, the mother of Ben, a young adult son with Down syndrome (7). One of the recurring themes in her discussion of all the significant issues that parents have to confront in bringing up their special child is that of "honestly admitting that they are different in some ways" and appreciating these differences, while seeking as "normal" a life as possible for their child.
Her book has been described by one reviewer as "perhaps the best single work on the tough and sometimes joyful dilemmas of understanding people with mental retardation". It is written in the form of forty short essays and vignettes of the lives of the authors family. They have all been chosen to illustrate a point that she wishes to make, often on important and profound issues, and around developmental challenges that all parents will face as their child grows up.
Practical ideasTwo books giving practical advice and aiming to improve practice have been published since our first survey, one in the USA (8) and the other a joint Canadian/ Australian venture (9). Both contain many valuable chapters identifying the progress that can be achieved with appropriate support and encouragement.
New work at the CentreIn addition to the survey already mentioned, which we hope to start in the spring of 1997, we are starting to get involved in the provision of further education and vocational training for school leavers in our local area, as parents are concerned about the range of opportunities available. We have had plans drawn to restore another large area of our building for educational and leisure use.
We will be working in collaboration with the Department of Continuing and Community Education at the University of Portsmouth as they are already providing a wide range of further and adult education courses for over 100 full-time students with special needs, and many more part-time students. Some of these programmes are specially designed to meet the needs of clients attending the Social Services day services and we will also be working with our local special schools.
We need £750,000 to restore the fabric of the part of the building that we have identified for this work, redesign and refurbish it and our plans have been selected by the Portsmouth and South East Hampshire Partnership and included in their bid for funding from the Single Regeneration Budget: Challenge Fund.
Meanwhile, we have started to work together and the programmes described above moved into our building on 1st September, so our current space is now being very fully used. We plan to work to develop models of good practice, especially in employment programmes and to offer training to others as part of the Masters programme in the Applied Psychology of Learning Difficulties that the University already offers.
References1. Buckley S.J. & Sacks B.I. (1987) The Adolescent with Down Syndrome: life for the teenager and for the family. Portsmouth Downs Syndrome Trust
2. Buckley S.J. (1992) Adolescence for Teenagers with Down Syndrome. The Portsmouth Down Syndrome Trust 4 (2) 3-9.
3. Carr J. (1995) Down syndrome: Children growing up. Cambridge University Press.
4. Shepperdson B. (1988) Growing up with Down syndrome. Cassell.
5. Byrne E. & Cunningham C. (1988) Families with children with Down syndrome: one thing in common. Routledge
6. Nehring W.M. (1996) The Lives of Young Adults with Down Syndrome: A Life Histories Approach. Paper presented at the IASSID conference, Helsinki, July 1996.
7. Trainer, M. (1991) Differences in common: Straight Talk on Mental Retardation, Down Syndrome and Life. Woodbine House.*
8. Pueschel S.M. (1988) The Young Person with Down Syndrome: Transition from Adolescence to Adulthood. Paul Brookes.
9. Denholm C.J & Ward J (1991) Adolescents with Down Syndrome: International Perspectives on Research and Programme Development. University of Victoria.