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Living with Autism As a University Student at Dublin City University: Developing an Autism Friendly University Project Team

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Living with Autism As a University Student at Dublin City University: Developing an Autism Friendly University Project Team Living with Autism as a University Student at Dublin City University: Developing an Autism Friendly University Project Report by: Dr. Mary Rose Sweeney and Prof. Teresa Burke School of Nursing and Human Sciences, Dublin City University; Katie Quinn and Adam Harris AsIAm .IE AM SI A at Dublin City Student University: as a University Living with Autism University Friendly an Autism Developing FRIENDLY AUTISM - UNIVERSITY 01 Project Team Dublin City University Dr. Mary Rose Sweeney, Associate Professor, School of Nursing and Human Sciences Principal Investigator and Project Lead at DCU. Prof. Teresa Burke, Chair of Psychology, School of Nursing and Human Sciences Co-investigator at DCU. AsIAm Adam Harris, Chief Executive Officer at AsIAm Katie Quinn, BSc Psychology, MSc Applied Behaviour Analysis, Project Lead at AsIAm Acknowledgements The project team would like to acknowledge the following: Peter Brabazon, General Manager, Specialisterne, Ireland, co-partner in the overall project “The All-campus initiative” for his support of the research team. Eadaoin Whelan, BSc, MSc Psychology, for her support in conducting the literature review. Sinead Begley and Associates www.begley.ie for conducting and transcribing the focus groups with staff at DCU. Adam Fakih, Assessment and Support Executive, Specialisterne, Ireland, for supporting the project team. Students and staff at DCU, who gave so generously of their time to inform and facilitate this project. Special thanks to those who volunteered at the Autism Awareness Exhibition. The DCU Research Ethics Committee for their review of the research protocol. Table of Contents Study Background, Aims and Methods Study 3: Focus Groups and Interviews Overview 1 Results Study 3: Focus Groups and Interviews 75 Background 3 Knowledge of and experience with students with Autism 77 Study Aims 33 Issues that arise in engaging with students with ASD 83 Methods 34 Supports needed by staff - to support students 85 DCU – Study Context Making DCU a more inclusive place for students with Autism - 87 Suggestions arising from Focus Groups Faculty Structure 39 DLSS supports available to students on the Autism spectrum 88 DCU Student Support Services – 42 DCU Student Support & Development Results: Interviews 89 DLSS supports available to students on the Autism spectrum 45 Study 4: Sensory Audit 97 Other relevant DCU Services: Supports for Students 46 Conclusion and Next Steps Study 1: Survey for Students with Autism Summary and Discussion 109 Results: Study 1 – Online Survey for DCU Students with Autism 47 Conclusions and Next Steps 119 Respondent Profile 48 Recommendations, principles and actions Diagnosis and co-morbidity 49 Recommendations 121 Disclosure 51 Principles of an Autism Friendly University 122 Improving Social Experience 59 DCU-specific proposed actions to embed the 123 principles of the Autism Friendly University Academic Experience at DCU 61 Raising Autism Awareness Securing job / internship or work experience 65 Autism Awareness Exhibition 129 Advantages to being a college student with Autism 67 Establishing an Autism Society at DCU 132 Perceptions of DCU 67 Conference Presentation 133 Greatest Challenges 69 Newspaper and Other Publicity 135 Personal Strengths 70 Obtaining Buy-in 140 Living with Autism as a University Student at Dublin City Student University: as a University Living with Autism University Friendly an Autism Developing Contents Study 2: Survey for General Student Body 71 References 141 i Appendices 147 ii List of Appendices Table of Tables Appendix 1 DCU Research Ethics Committee Approval 147 Table 1 DCU Student Support and Development (SS&D) 43 Appendix 2 Call for Participants (Students with Autism) – 148 Table 2 Demographic data – students with Autism 48 issued by DLSS to DLSS registered students Table 3 ASD Diagnosis 50 Appendix 3 Call for Participants (Students with Autism) – 149 issued by the PI to all DCU students Table 4 Responses provided to a range of statements intended to 53 gauge perceptions of life on campus for students with Autism Appendix 4 Participant information leaflet (Students with Autism) 150 Table 5 Most difficult things about social interaction or socialising 58 Appendix 5 Information about Pobal (project funders) 151 on campus – ranked ordered by most frequently selected among individual top 3 Appendix 6 Questionnaire for completion by students with Autism 152 Spectrum Disorder (Study 1) Table 6 Best or easiest things about social interaction or socialising 58 on campus – ranked ordered by most frequently selected Appendix 7 Call for Study Participants – All Dcu students - Vignette 159 among individual top 3 study Appendix 8 Participant information leaflet (All DCU Students) 160 Table 7 Vignette study responses 73 Appendix 9 Questionnaire / Vignette for All Students in DCU 161 Appendix 10 Call for Participants: Focus Group with Academic Staff 163 Appendix 11 Call for Participants: Focus Group with University Support 164 List of Figures Staff Appendix 12 Participant Information Leaflet - Focus Groups/Semi- 165 structured interviews - Support Staff Figure 1 Disclosure patterns: number of students who have and have 51 not disclosed their Autism diagnosis to DCU Disability and Appendix 13 Consent Form: Staff semi-structured interviews / Focus 166 learning Support Services, to other students and to DCU Groups academic staff Appendix 14 Topic guides for DCU staff undertaking one-to-one 167 interviews or focus groups Figure 2 Students with Autism ratings of their social experience at 57 DCU Figure 3 Students with Autism ratings of their academic experience 61 at DCU Figure 4 Responses to vignette - general student survey (n=227) 72 Figure 5a Academic Staff Focus Group Responses: What do you think 76 about when you hear the word Autism? Figure 5b Support Staff Focus Group Responses: What do you think 76 Living with Autism as a University Student at Dublin City Student University: as a University Living with Autism University Friendly an Autism Developing Contents about when you hear the word Autism? iii iv Overview AsIAm describes Autism as: services and structures currently in place in DCU for students with “a complex, invisible condition which Autism, assess their adequacy in a person is born with. Autism is a terms of meeting students’ needs, developmental condition which and to highlight any gaps that could means that the way a person be addressed to improve life on communicates, interacts and campus. A whole-campus approach understands other people, and the to the study was taken, involving world, is different to those who do students, academics and support not have the condition. It can be staff from across the multi-site described as a “spectrum” which university. means it impacts different people, in In January 2016, Dublin City University (DCU) announced its intention different ways, to differing degrees In announcing this iniative, Professor to become Ireland’s first Autism-Friendly University through a unique at different times and in different Brian MacCraith, President of DCU collaboration with AsIAm an Autism advocacy organisation and situations.” said: Specialisterne Ireland, a specialist recruitment and support agency for people with autism. The project reported on here marks "This unique project is consistent the beginning of a programme with DCU’s commitment to an ethos Autism is a developmental disability that affects how one relates to, and of activity designed to create an of education for all. We are very communicates with other people. A number of definitions for autism environment that allows students aware of the challenges faced by our exist but there is general agreement that the following characteristics with Autism to take part more fully students with Autism and Aspergers. are common amongst those on this spectrum - difficulties with in college life and to enhance their We hope both to lead and to learn, communication, socialising, repetitive behaviours and a heightened opportunity to gain employment applying innovative thinking to bring sensory perception. after completing their studies. down barriers to education and employment in collaboration with According to the World Health Organisation, Researchers at the School of Nursing AsIAm.ie and Specialisterne. We and Human Sciences at DCU, in want all students to be able to get Autism/Autism Spectrum Disorder (ASD) “… refers to a range collaboration with AsIAm undertook through difficult transition points of conditions characterised by some degree of impaired social a multi-arm study that explored at third level, stay the course and behaviour, communication and language, and a narrow range of the experiences of DCU students have a full and fulfiling university interests and activities that are both unique to the individual and living with Autism. The study aimed experience, both socially and carried out repetitively. ASDs begin in childhood and tend to persist to identify and explore the support academically.” into adolescence and adulthood. In most cases the conditions are apparent during the first 5 years of life. Individuals with ASD often present other co-occurring conditions, Autism is a developmental condition including epilepsy, depression, anxiety and attention deficit which means that the way a person hyperactivity disorder (ADHD). The level of intellectual functioning communicates, interacts and in individuals with ASDs is extremely variable, extending from Living with Autism as a University Student at Dublin City Student University: as a University Living with Autism
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