Salt, Emily Anne (2019) Experiences of, and attitudes, towards growing up and adulthood: a comparative study of young people with and without mild intellectual disabilities. PhD thesis. https://theses.gla.ac.uk/41001/ Copyright and moral rights for this work are retained by the author A copy can be downloaded for personal non-commercial research or study, without prior permission or charge This work cannot be reproduced or quoted extensively from without first obtaining permission in writing from the author The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the author When referring to this work, full bibliographic details including the author, title, awarding institution and date of the thesis must be given Enlighten: Theses https://theses.gla.ac.uk/ [email protected] Experiences of, and attitudes, towards growing up and adulthood: A comparative study of young people with and without mild intellectual disabilities Emily Anne Salt MA(hons), MSc Submitted in fulfilment of the requirements for the Degree of Doctor of Philosophy Institute of Health and Wellbeing College of Medical, Veterinary, and Life Sciences October 2018 i Abstract To some extent, ‘adulthood’ and ‘adult identity’ can be thought of as socially constructed phenomena, capable of evolving in response to societal consensus. For many typically developing young adults, the period that encompasses the transition to adulthood is thought to be elongating. In many ways, the traditional pathways to adulthood have eroded, leaving many young people feeling ambivalent about the process of growing up. Due to a combination of social and economic pressures and ideological shifts, young people are becoming increasingly likely to delay certain social role transitions, most notably marriage and parenthood, until their mid to late twenties and early thirties. Subjective adult identity, or feeling like an adult, is also thought to be taking longer to develop. For young adults with mild intellectual disabilities and their families, however, the transition to adulthood stands to be even more complicated. Developmental delay and difficulties adapting to change can have the potential to make service transitions harder to adjust to. These experiences might also be exacerbated by the fact that options for purposeful daytime activity can be limited for members of this population. Moreover, pervasive narratives of risk and vulnerability necessarily compete with a number of the normative outcomes of transition, most notably the development of self-determination and independence. Concerns about safety and security may therefore prevent parents and service providers from providing opportunities for positive risk-taking and experimentation. This is even though such experiences can make vital contributions to personal development and maturation. Through strategies such as Keys to Life and More Choice, More Chances, the Scottish Government has committed itself to help all young people to achieve positive transition outcomes. However, to date, there has been very little research undertaken to find out how young people with and without mild intellectual disabilities think and feel about the transition to adulthood, including their attitudes towards self-determination, independence, and autonomy. This thesis aimed to address this gap in the research by investigating young Scots’ and their parents’ experiences of, and attitudes towards growing up and adulthood. Using a mixed-methods approach, including semi-structured interviews, interactive flashcard activities, a vignette, and a questionnaire, data from over 100 participants have been collected and analysed. Our findings suggest that, despite high variation in the levels of autonomy experienced by the participants, young people with and without mild i intellectual disabilities share complicated feelings towards the prospect of increased independence. Both groups, for example, hoped to work towards independence, albeit over different time frames, yet also voiced a degree of reluctance to adopt additional responsibility at home. The desire for an ‘easy life’, for example, appeared to be present in both groups, though genuine concerns about coping without support were more prevalent in the group with mild intellectual disabilities. Similarly, while attitudes towards parental support and interference were mostly positive in both groups, the majority of participants suggested that they would resist interference in personal, or private domains. However, there was some evidence to suggest that the young people with intellectual disabilities perceived the balance of power within their own families as more skewed towards their parents. With regards to the nature of adulthood and adult identity, our findings corroborate previous claims that individuals conceptualise adulthood in ways that are relevant and achievable to themselves. We found tentative evidence, for example, that the young adults with intellectual disabilities may prioritise interpersonal dimensions of ‘responsibility’ - such as looking after other people and fulfilling one’s familial obligations - as being the most salient criteria for adulthood. In contrast, the typically developing participants appeared to focus on more individualistic expressions of responsibility, such as self- sufficiency, personal responsibility, and independent decision-making. Though speculative, our findings demonstrate that individuals with intellectual disabilities can have unique perspectives on universal phenomena that are not only interesting in their own right but may also have consequences for the broader literature. The implications of these findings for policy and practice are also outlined, as well as opportunities for future research. ii Table of Contents CHAPTER 1 BACKGROUND; ADULTHOOD AND ADULT IDENTITY ....................................... 1 1.1 INTRODUCTION ............................................................................................................................................ 1 1.2 DEFINING ‘INTELLECTUAL DISABILITIES’ ............................................................................................... 1 1.3 DISABILITY IDENTITY ................................................................................................................................. 3 1.3.1 Overview of the identity construct ......................................................................................................... 3 1.3.2 Disability as a Social Identity: Varying Models of Disability ...................................................... 4 1.3.3 Disability as a Social Identity: Attitudes within society ............................................................... 6 1.3.4 Disability as a Personal Identity .............................................................................................................. 8 1.4 ADULT IDENTITY ...................................................................................................................................... 11 1.4.1 Criteria for Adulthood ................................................................................................................................ 11 1.4.2 Subjective Adult Identity ........................................................................................................................... 17 1.4.3 Implications of Adult Identity Research ............................................................................................ 20 1.5 EXPERIENCING THE TRANSITION: TYPICALLY DEVELOPING YOUNG PEOPLE AND THEIR FAMILIES . 23 1.5.1 Overview ........................................................................................................................................................... 23 1.5.2 Transition Stressors and Mental Health ............................................................................................ 24 1.5.3 Social Transitions ......................................................................................................................................... 24 1.5.4 Laying Foundations for the Future ...................................................................................................... 26 1.6 EXPERIENCING THE TRANSITION: YOUNG PEOPLE WITH MILD TO MODERATE INTELLECTUAL DISABILITIES AND THEIR FAMILIES ...................................................................................................................... 28 1.6.1 Overview ........................................................................................................................................................... 28 1.6.2 Balancing Self-determination and Risk ............................................................................................. 29 1.6.3 Practical Transitions .................................................................................................................................. 33 1.6.4 Social Transitions ......................................................................................................................................... 37 1.7 SUMMARY ........................................................................................................................................................... 39 CHAPTER 2 SYSTEMATIC LITERATURE REVIEW ..................................................................... 41 2.1 INTRODUCTION ................................................................................................................................................