When the Road Gets Bumpy… Transition to Adulthood for People with Autism Spectrum Disorder
Author(s):
Ewelina Rydzewska (presenting / submitting)
Conference:
ECER 2012
Format:
Paper

Session Information

14 SES 08 A, School-related Transitions Within a Life Course Perspective – Later Phases

Parallel Paper Session

Time:
2012-09-20
09:00-10:30
Room:
ESI 2 - Aula 4
Chair:
Joana Lúcio

Contribution

This abstract draws on a range of research evidence in order to explore the process of transition to adulthood for people with autism spectrum disorder (ASD). It provides a synopsis of youth transitions in European contexts in the last six decades (Marshall, 1992; Heinz, 2009) and highlights patterns of vulnerability for people with ASD. Presented findings focus on the nature of ASD and its impact on the transition as well as the conceptualisation of this process.

Although ‘overwhelmingly, the transition to adulthood has (...) been studied from the perspective of objective demographic markers (such as entry into marriage and parenthood)’ (Gauthier & Furstenberg, 2002, p. 154), it was the author’s intention to emphasise the subjectivity of these objective demographic markers. The minimum school leaving age in UK has remained unchanged at sixteen since 1972 (Furlong et al., 2003). However, relatively few young people across Europe now leave at this stage and most of them participate in some further education or training. Few, especially amongst people with ASD, are able to make the early and direct transitions to adulthood that were relatively common in the 1960s and 70s (Marshall, 1992). In this context, modern transitions have come to be viewed as marked by discontinuities, uncertainties and backtracking (EGRIS, 2001).

Nowadays, the borders between all phases of the life course have become blurred and fuzzy and the duration of all transitions relies more on individual choices and lifestyles (Heinz, 2009). Varying degrees of difficulty in conforming to these socially expected and culturally transmitted age-norms can be greatly increased when one is faced with a diagnosis of ASD (Howlin, 2004). Therefore, this project set out to explore the relevance of objective demographic markers for adults with ASD. This objective was consistent with the theoretical assumption that the transition to adulthood is a complicated phenomenon, related both to sociocultural and to cognitive processes. In essence, the underlying principle of this study was to explore the ecological validity of dominant developmental tasks approach: to examine whether the process of transition to adulthood for people with ASD can be defined by the concept which assumes that human development in modern societies is characterised by a long series of tasks that individuals have to learn throughout their lives in order to achieve happiness, approval of the society and success in completing later tasks (Bee & Bjorklund, 2008; Boyd & Bee, 2009).

The principal theoretical aim of this project was also to explore the notion of the transition to adulthood from the differing perspectives of service providers, service users and parents of adults with ASD across Scotland. Moreover, the study aimed to provide an account of the current situation regarding service provision for adults with ASD. A further significant line of this research was to study whether development, availability and awareness of appropriate service provision can or has affected the transitions made by the service users participating in this study.

Method

This qualitative study explored personal experiences and perceptions of transition to adulthood of people with ASD, professionals who work with them and parents who have an adult child with ASD. Using grounded theory methodology, adults with Asperger’s syndrome (AS) or high-functioning autism (HFA) aged 16-43 years (n=12), professionals working with adults with ASD across Scotland (n=11), and parents of adults with ASD (n=8) were interviewed. Participants represented seven different service provision institutions and lived in seven different Scottish counties. A total of 31 face-to-face interviews with service providers and service users were conducted. Some interviews with adults with ASD were carried out in the presence of close family members or, in one case, a service provider, others separately. Interviews with parents of adults with ASD were arranged in two focus groups. Secondary or other data sources were used in the constant comparison of interview data. These included published personal accounts provided by some of the respondents, researcher’s diary and notes from the fieldwork, e-mail correspondence with interviewees, notes taken from telephone or SMS conservations, additional meetings before and after the interviews had been conducted as well as discussions with colleagues (Silverman, 1993).

Expected Outcomes

The core category of ‘transition bumps’ emerged during constant comparative analysis of the data and it depicts the fact that nowadays transitions and people’s life courses have become much more complex (Heinz, 2009). It also refers to the fact that each case of an individual with ASD is different and unique; hence each pathway and each transition can tell a different story. One of the broad themes identified within the core category concerns various issues affecting everyday life of respondents with ASD, which presents in more detail the obstacles associated with having ASD. Other broad themes within the core category talk about the process of obtaining and accepting a diagnosis of ASD and its impact on the transition, various manifestations of risk behaviours (Eaton et al., 2010) being a significant part of transitions experienced by the respondents as well as expectations imposed on all three groups of respondents by society and by themselves. The latter occurred to be a rather extensive part of the data as it reflects the reciprocity of such expectations. The majority of the respondents felt that certain things were expected of them, but they also had expectations for their lives or, for example, service provision.

References

Bee, H. L., & Bjorklund, B. R. (2008). The Journey of Adulthood (Sixth ed.). Upper Saddle River, N.J.: Pearson Prentice Hall. Boyd, D., & Bee, H. (2009). Lifespan Development (Fifth ed.). Boston: Pearson International Edition. European Group for Integrated Social Research (EGRIS). (2001) Misleading Trajectories: Transition Dilemmas of Young Adults in Europe. Journal of Youth Studies, 4(1), 101-118. Eaton, D. K., Kann, L., Kinchen, S., Shanklin, S., Ross, J., Hawkins, J., Harris, W. A., Lowry, R., McManus, T., Chyen, D., Lim, C., Whittle, L., Brener, N. D., & Wechsler, H. (2010). Youth Risk Behavior Surveillance. Department Of Health And Human Services Centers for Disease Control and Prevention: Morbidity and Mortality Weekly Report Vol. 59/No. SS-5. Furlong, A., Cartmel, F., Biggart, A., Sweeting, H., & West, P. (2003) Youth Transitions: Patterns of Vulnerability and Processes of Social Inclusion. Edinburgh: Scottish Executive Social Research Enterprise. Gauthier, H. A., & Furstenberg, F. F., JR. (2002) The Transition to Adulthood: A Time Use Perspective. The ANNALS of the American Academy of Political and Social Science, 580(1), 153-171. Heinz, W. R. (2009) Youth transitions in an age of uncertainty. In A. Furlong (Ed.), Handbook of Youth and Young Adulthood. New Perspectives and Agendas. Oxon: Routledge. Howlin, P. (2004) Autism and Asperger Syndrome. Preparing for Adulthood (Second ed.). London and New York: Routledge. Taylor&Francis Group. Marshall, T. H. (1992) Citizenship and Social Class. London: Pluto. Silverman, D. (1993). Interpreting qualitative data. Newbury Park, California: SAGE Publications.

Author Information

Ewelina Rydzewska (presenting / submitting)
University of the West of Scotland
School of Education
Edinburgh

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