The Road Ahead – Literature review

2. What is transition to adulthood?

The process of moving from childhood to adulthood is a difficult time for most young people. As Heslop et al (2002) put it:

'We make many transitions in our lives, but perhaps the one with the most far-reaching consequences is the transition into adulthood.' (Heslop et al, 2002)

Alongside the many physical and emotional changes that are part and parcel of adolescence, growing up also involves changes in roles, relationships, expectations and status - within family, amongst friends and within the wider community of home, school and work. For many young people, leaving school or leaving home at this life-stage can mean huge changes in the environments where they live and spend their days. As if these challenges were not enough, for the vast majority of young people with learning difficulties the process of transition to adulthood has an extra dimension: managing the move from services for children, to services for adults. As Heslop et al (2002) point out, this is not simply a case of moving from one set of organisations targeted at children to a parallel entity concerned with adults. The reality is that the two sets of services tend to be organised in very different ways and to have very different cultures.

The literature in this field refers to many and varied ways of conceptualising the notion of transition to adulthood. Some authors have looked at what factors make a 'successful' transition for young people, whilst others have focused on socially determined 'markers' of adult status. Ward and Thompson (1997; quoted in Clegg et al, 2001) identified the following factors which make transition successful for young disabled people: employment, independent living, economic self-sufficiency, uptake of postsecondary education, adult role-taking and social participation. Hudson (2003) proposes a three-fold framework for addressing transition for young people with learning difficulties. The framework includes paying attention to inputs (what does a successful transition programme need to cover?), process (how is the programme to be delivered?), and outcomes (how can effectiveness be determined?). He goes on to suggest that indicators of a successful transition for young people with learning difficulties might include: a high uptake of post-secondary school education, employment or economic self-sufficiency, personal independence, social competence, taking up an adult role at home and/or in society.

Fish (1986; quoted in Mitchell, 1999) identified a number of markers of adult status, including: employment, useful work and valued activity, personal autonomy, independent living, social interaction and community participation. Similarly Ferguson et al (1998; quoted in Blacher, 2001) suggests that transition to adulthood for young people with learning difficulties may be conceptualised in terms of (a) status transitions (events directly involving the young person such as leaving school, getting a job, moving out of the parents' home); (b) family life transition (changes or disruptions to the family's established routines and responsibilities that make daily life manageable); and (c) bureaucratic transition (the shift to adult services).

Mitchell (1999) points out that most notions of adulthood refer to culturally valued markers and symbols of social respect and status, thus inferring that elements of power, independence and autonomy are involved in the transition to adulthood. Her own study (of special school leavers) advocated a more flexible notion of transition, which acknowledges gradual changes within the life-course and respects the ideas and aspirations of families and young people.

An acceptance that achieving adult status is qualitatively different for young people with learning difficulties is central to much of the literature covered for this review. From the point of view of those involved in providing services to young people with learning difficulties, transition to adulthood begins at age 14 (Year 9) and continues until the young person leaves school (age 16 or 19) or post-compulsory education (up to age 25). However, the reality is that planning for the future is an evolving process, with the recognition that leaving school or college is just one step along the path of a longer journey (Heslop et al, 2002). As Mitchell (1999) has noted, transition to adulthood for special school leavers continued over the whole life-course. For people with learning difficulties, for example, the adult marker of leaving home may not occur until much later life, or when a parent or carer dies. Similarly, Hussain et al's (2002) study of the experiences of S outh Asian disabled young people and their families found that for these young people, independence was more about exercising control over their lives than about leaving the family home. Research by Skill (2003) the National Bureau for Students with Disabilities, emphasised the importance of inter dependence (as opposed to independence) as a marker of success at transition for young people with learning difficulties from a South Asian background.

Indeed, several authors have pointed out that generic notions of transition and adulthood do not necessarily ring true for all young people. Small et al (2003) argue that the experience of transition for young people with learning difficulties is markedly different to the experience of transition for other young people. They make the point that recent developments in the sociology of youth, which emphasise an individualised notion of choice and opportunity, have not recognised the centrality and importance of social networks and family relationships in the lives of young people with learning difficulties. In a similar vein, Tisdall (1994) argues that models of transition lack a consensus on the criteria for a 'successful' transition and fail to incorporate the views of young people into the debate. The author advocates a model of transition based on citizenship which would include greater connexions between advocacy organisations of disabled people and young disabled people.

So how do young people with learning difficulties conceptualise transition? Very few published studies have asked young people about what transition to adulthood means to them. A rare exception is Heslop et al's (2002) study which asked young people with learning difficulties what would make them feel 'grown up'. One of the most frequent responses was 'a job', alongside responses to do with chronological age, the passing of birthdays, getting married and moving away from home. For many young people in this study, getting a job and thus having money that they had earned themselves was the marker of adulthood.

Mitchell's (1999) study also highlighted a number of important factors and signifiers of 'adulthood' for special school leavers:

'Ian valued having his own front door key. For Laura, caring for her disabled boyfriend provided an important sense of self-worth and a recognised social role.' (Mitchell, 1999)

As these examples demonstrate, one defining feature of the sorts of goals and perceptions that young people with learning difficulties have at transition is that these are almost always commonplace and realistic. Williams' (2003) work with young people with learning difficulties with mental health needs found that they wanted some very ordinary things at transition: work, independent living, friendships.

A number of pieces of smaller-scale consultation work with young disabled people and young people with learning difficulties in the UK have highlighted that many young people have spent time thinking about future choices and what being an adult means to them. A weekend drama workshop/consultation with 18 young disabled people in England (Barnardo's, undated) identified the following key issues at transition: leaving home, getting a job, friendships and relationships, but also found that these are often the last issues to be discussed by professionals. When asked what transition meant to them, the young people gave the following replies:

Another consultation with young disabled people in Southampton (England) had broadly similar findings. The main things young people wanted to achieve at transition were to go to college, to go to work and get a job, to earn money or to leave home (Choices Advocacy, undated).

For families, perceptions about what transition to adulthood might mean for their son or daughter will most certainly be tinged with fear and anxiety about the future (Ward et al, 2003d; Goupil et al, 2002; Mitchell, 1999). The families involved in Mitchell's (1999) research experienced conflicting emotions at transition. They wanted to encourage future aspirations, but also feared undue disappointment for their son or daughter. The role that families play in promoting and encouraging positive, appropriate and realistic goals for their adult children is a common theme in the literature on transition. Cooney's (2002) study found that parents' goals for their adult son or daughter with disabilities included having a sense of fulfilment through the use of talents and abilities, contributing to the greater community and keeping him or her safe from harm. Parents emphasised their youngster's strengths and capabilities and were positive about his or her ability to achieve a promising adulthood. This was not reflected by professionals who focused on areas of limitation and discrepancy and tried to match young people's 'needs' to the current service situation.

Transition can be a very challenging time for families on many levels and will also mean a transition for them, into a new role as parents of young adults (Russell, 2003). For non-disabled youngsters, there is an expectation that parental involvement and influence in the young person's life will diminish with the transition to adulthood. But for young people with learning difficulties, this is a time when more, not less, parental involvement is likely and indeed necessary. Some of the families involved in Heslop et al's (2002) study found that they had less independence from their youngsters as they approached adulthood than when they were still at school. This is a theme to which we will return in section five.

Key areas of information need for young people with learning difficulties and their families:

There will be different issues to consider for young men, young women, young people from Black and minority ethnic groups, young people with high individual support needs, and young people living away from home. Transition to adulthood means different things to different people.