‘Here I come again’: the cost of success for higher education students diagnosed with autism

ABSTRACT

This qualitative study used Interpretative Phenomenological Analysis to consult with 16 autistic UK higher education (HE) students about their experiences of success. An in-depth participatory approach encouraged participants to become co-analysts of their data.

Participants offered counter-narratives to deficit-based interpretations of autism, giving accounts of making themselves ‘extra-visible’ as autistic in order to assert their rights. The autism diagnosis was perceived both as an aid to self-understanding and a cause of additional barriers. In raising awareness of their own needs, participants contributed to broader understandings of autism within their academic communities, inadvertently becoming educators and role models. The research highlights the extra effort required by autistic students to thrive within higher education and the barriers imposed by current requirements to both pursue formal diagnosis, and to disclose it in order to receive adjustments. The research was novel in its approach and in its focus on success, revealing original findings in relation to the challenges and barriers faced by high-achieving autistic students, and the implications for a more inclusive higher education curriculum and environment are considered.

KEYWORDS:

• Higher education
• autism
• disclosure
• inclusive curriculum
• Interpretative Phenomenological Analysis

Acknowledgements

My thanks go to the higher education students who so generously gave their time and attention to this research, including Alex Ashley, Andrew Jones, Damian Milton and Jacob Turner. Thanks also to Professor Graeme Douglas and to Charlie Hill for their helpful comments on drafts.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Dr Andrea Macleod is a lecturer in Autism Studies at the University of Birmingham. She leads two distance-education courses for professionals working in the field of autism, having formerly worked for many years in the voluntary sector. Her research focuses on inclusion and equality of opportunity for autistic adults and she has a particular interest in participatory methodologies.

Julie Allan is Professor of Equity and Inclusion at the University of Birmingham, UK, and Visiting Professor at the University of Borås, Sweden. Her research interests are in disability, inclusion and children’s rights. Her most recent books are The Routledge World Yearbook in Education (2017, edited with Alfredo Artiles), Rethinking inclusive education: The philosophers of difference in practice (2008, Springer) and Doing inclusive education research (2008, with Roger Slee, Sense).

Ann Lewis is Professor Emeritus (Special Education and Educational Psychology) at the University of Birmingham, where she headed a 35-strong research group focusing on children with special needs or disabilities. She remains active in the field through a variety of charity-related, research and consultancy activities.

Christopher Robertson is an independent academic and author. He specialises in special educational needs and disability-focused policy analysis and the implications of policy for schools and other educational organisations. He is also a honorary lecturer in education at the University of Birmingham. For fifteen years, Christopher edited SENCO Update, a monthly publication focusing on the implications of policy and research for SENCOs and other educational professionals within special/inclusive education. He is currently the chair of the SENCO Forum’s (a national e-discussion network) advisory group.

Notes

1 Boundaries between subcategories of the autism spectrum, such as between Asperger syndrome (AS) and high functioning autism (HFA), are recognised as problematic (see Wing, Gould, and Gillberg 2011 for a fuller consideration of the issues). Within this paper, I refer to ‘autistic adults’ in recognition of the fact that this tends to be the preferred term for those thus diagnosed (Kenny et al. 2015).

2 Weebles is a trademark for several lines of children’s roly-poly toys originating in Hasbro's Playskool division on 23 July 1971. Tipping an egg-shaped Weeble causes a weight located at the bottom center to be lifted off the ground. Once released, gravitational force brings the Weeble back into an upright position. Weebles have been designed to have a variety of shapes, including some designed to look like people and animals, among others.

The popular catchphrase, ‘Weebles wobble, but they don’t fall down’, was used in advertising during their rise in popularity in the 1970s and during successive relaunches in the early twenty-first century.

https://en.wikipedia.org/wiki/Weeble [Accessed 18th April 2017].