Living with Autism as a University Student at Dublin City University: Developing an Autism Friendly University
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Living with Autism as a
University Student at
Dublin City University:
Developing an Autism
Friendly University
Living with Autism as a University Student at Dublin City University:
Project Report by:
Dr. Mary Rose Sweeney and Prof. Teresa Burke
School of Nursing and Human Sciences,
Dublin City University;
Developing an Autism Friendly University
Katie Quinn and Adam Harris
AsIAm
E
M.I
IA
AS
AUTISM - FRIENDLY
TY
UNIVERSI
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
Living with Autism as a University Student at Dublin City University:
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
Developing an Autism Friendly University
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
Contents
Obtaining Buy-in 140
Study 2: Survey for General Student Body 71
References 141
Appendices 147
ii
i
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
Living with Autism as a University Student at Dublin City University:
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
Developing an Autism Friendly University
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?
Contents
Figure 5b Support Staff Focus Group Responses: What do you think 76
about when you hear the word Autism?
iv
iii
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
Living with Autism as a University Student at Dublin City University:
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
Developing an Autism Friendly University
carried out repetitively. ASDs begin in childhood and tend to persist
Study Background, Aims and Methods
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
in individuals with ASDs is extremely variable, extending from
communicates, interacts and
profound impairment to superior levels” understands other people, and the
world, is different to those who do not
have the condition.
01
02
Background
disability services who were not received the diagnosis of Aspergers/
new entrants to the institutions, Autism choose not to disclose
representing 9.7% of the total their diagnosis, and gain access to
number of students with disabilities support services, until a significant
registered with the relevant support problem has arisen (Barnhill,
services in these institutions (up 2016; Gobbo & Shmulsky, 2012;
from 6.7% the previous year) and Simmeborn Fleischer, 2012; Taylor,
representing 24% of total new 2005). Furthermore, as Barnhill
registrations. (2016) says:
Based on the AHEAD 2015/2016 “……. the diagnosis of AS is often
data (AHEAD, 2017), 652 students delayed and many individuals do
The most recent report published Neurological/Speech and Language with disabilities were registered with not receive this diagnosis until
by the Assocication for Higher Condition, 1,193 (10.6%) had a the DCU disability/access service, adulthood. Therefore, college
Education Access and Disiability Significant Ongoing Illness, 731 representing 5.6% of the total students may arrive on campus
(AHEAD) on the participation rates (6.5%) had a Physical Disability, student population of DCU. These without the diagnosis or they
of students with disabilities in Higher 5,116 (45.5%) had a Specific data reflect a participation rate that may be misdiagnosed and not
Education in Ireland (AHEAD, 2017) Learning Difficulty, and 122 (1.1%) is running slightly above the average even realize that they need
revealed that, in the 2015/2016 were listed under Other category. for the Irish Higher Education Sector accommodations to be successful
academic year, a total of 11,244 as a whole (5.2% participation (Langford-Von Glahn et al., 2008;
students with disabilities were These figures almost certainly rate across the sector) and above VanBergeijk et al., 2008).” (Barnhill,
registered with the disability/access under-represent the numbers of the average for the Irish University 2016, pg. 4)
services of the 25 participating students with disabilities currently Sector specifically (5% participation
institutions. This number represents attending Irish Higher Education rate across the university sector). What is clear is that across the third
5.2% of the total student population Instituties, because, as noted in the DCU, which has recently expanded level sector, both in Ireland and
Living with Autism as a University Student at Dublin City University:
and a 4% rise from the 2014/2015 AHEAD (2017) Report, the data to approximately 17,000 had 44 internationally, an increasing number
academic year in terms of the total captured only those students who students with Autism/Aspergers of higher education places are
number of students with disabilities have registered with the disability/ registered with its Disability and sought and accepted by students on
registered with the disability/access access services of the participating Learning Support Service the Autism spectrum (Barnhall, 2016;
services (AHEAD, 2016). institutions. Thus, students with a (academic year 2016-2017).
Developing an Autism Friendly University
disability who have not registered
Study Background, Aims and Methods
Of the 11,244 students represented with the relevant services are not The true number of
in the disability profile for 2015/ included in the findings. students with Aspergers/ In the 2015/2016 academic
2016, 535 (4.8%) were in the Autism at DCU it not year, a total of 11,244
Aspergers/Autism category, 461 Of interest, almost a quarter of all known, however, because
it is reasonable to expect students, or 5.2% of the total
(4.1%) had ADD/ADHD, 205 (1.8%) students who newly registered with
were Blind/Visually Impaired, 313 disability services in higher education that not all students student population, with
with Aspergers/Autism
(2.8%) were in the Deaf/Hard of institutions in Ireland in 2015/16
elect to register with
disabilities were registered
Hearing category, 678 (6%) had were not in their first year of study
DCD – Dyspraxia/Dysgraphia, (AHEAD, 2017, pg. 18). In total, the support services. Indeed, with the disability/access
1,416 (12.6%) had a Mental Health responding institutions identified it is well recognised that services of the 25 participating
Condition, 474 (4.2%) had a 975 students newly registered with many students who have
institutions
03
04
Background
Nolan, Quinn, & Gleeson, 2010; Nevill with ASD withdrew from higher deal with significant deficits in these space. A search and review of HEI/
& White, 2011, White, Ollendick & education before completion areas and with the fear and anxiety IEH websites across Europe and the
Bray, 2011; While et al., 2017) and (Autism Spectrum Australia, 2013) that typically accompanies these United States of America was also
this number is likely to grow into the and, in the UK, students with ASD conditions. Many IHEs currently undertaken.
future. achieve the lowest percentage of are not equipped to handle these
first class or upper second degree challenges (Dillon, 2007; Glennon, By reviewing what is currently
Given the prevalence of Autism in classifications across all disability 2001; Graetz & Spampinato, known about the challenges faced
Ireland, which has been identified groups (Blandford, Brill & Neave, 2008; Pillay & Bhat, 2012; M. J. by students with Autism in higher
by the current study PI and her 2011). Together, these findings Taylor, 2005) and often the college education, what is known about
colleagues as a minimum of 1% suggest that despite high academic disability offices are already successful interventions, and by
of the population (Autism Counts ability, university students with ASD stretched thin in resources and staff identifying the specific concerns/
Report, Sweeney et al., 2016; Boilson are not reaching their full academic (Wenzel & Rowley, 2010). (Barnhill, difficulties of DCU students with
et al., 2016), coupled with the growth potential (Siew et al., 2017). 2016 pg. 3). Autism, the research team set out to
of supports throughout primary In discussing the increased make a series of recommendations
and second level education and involvement of students with AS in Similarly, relatively little is known to Dublin City University to further
increased recognition of the abilities higher education, Barnhill (2016) about the initiatives that HEIs/IHEs meet their needs. In making these
and capabilities of many students says: are taking to address the challenges recommendations, it is hoped that
with Autism, Irish HEIs will, almost faced by their students with Autism they will, in turn, lead to an improved
certainly, see a continued rise in the “Institutions of higher education or about the efficacy of those University experience for DCU
number of students with Autism. (IHEs) have accepted these students initiatives. Hence, in this project, we students with Autism.
for admission based on their set out to identify the challenges
Despite this national and excellent academic scholarship faced by students with Autism Perhaps not surprisingly, the vast
international trend of increased and many have assumed that their specifically within the context of majority of intervention programmes
participation, relatively little campus centers for students with DCU. We also set out to identify how for students with ASD were found to
is known about the specific disabilities and learning differences we might address these challenges have been developed and applied
Living with Autism as a University Student at Dublin City University:
challenges students with Autism would handle any tutoring needs within the context of the university. across universities in the USA.
face in attempting to navigate these students may have, similar The study aimed to identify and Indeed, since the 2008 introduction
their University life. It is, however, to the way these centers have been explore current services for DCU of the US Department of Education
recognised that students with assisting students with learning and students with Autism, to explore their Higher Education Opportunity
Autism are likely to face challenges other disabilities for the last 25 to 30 adequacy in meeting the needs of Act (HEOA, 2008), a large number
that extend beyond those routinely years.” (Barnhill, 2016 pg. 3). students with Autism and to identify of higher education programmes
Developing an Autism Friendly University
Study Background, Aims and Methods
addressed by traditional third level any gaps that could be addressed have been piloted, with the aim of
student support services. She continues: to improve life on campus. A whole assisting students with Autism in
campus approach to the study was achieving further education and
Of significant concern is the fact “Unfortunately, students with AS taken, involving students, academics independence (Grigal et al., 2013).
that despite this increase in student and HFA present unique needs and support staff from across the The recent study by Barnhall (2016),
enrolments, only a minority of that differ in many respects from multi-site university. designed to identify the services and
students with ASD successfully the needs of the students requesting accommodations that are currently
complete their university or college accommodations for their learning As an integral part of this project, a being provided in American IHEs
education (Levy & Perry, 2011). As disabilities, especially in the area review of peer-reviewed studies was for students with AS and HFA and
noted by Siew et al. (2017), almost of nonacademic supports such as undertaken to explore what other to determine the components of
a quarter of Australian students social and emotional supports to HEIs/IHEs have been doing in this successful programs provides a
05
06
Background
useful resource for those who wish available to provide the program other HEIs charged a fee that
to introduce and/or provide specific that was provided in the past. ranged from a low of US$1,050 to
support services. For the purpose a high of US$17,400 a year, above
of the study, an Internet search was As noted by Barnhill, the support the standard tuition and room and
conducted to identify colleges and services currently offered by the IHEs board fees. The average yearly fee
universities in the United States offering specific support services for the IHEs that charged for these
that offered specific support for varied substantially, mirroring earlier additional services and supports
students with AS. Other IHEs that findings by Smith (2007). Other was US$6,525 above the standard
offered additional specific services key findings were that resource tuition and room and board fees,
for students with AS/HFA were limitations, including lack of funding payable either per academic
identified through review of the and professionals trained in ASD, semester or per academic quarter.
research literature. The search act as barriers to implementing It is interesting to note that this
strategy resulted in the identification support programs and there is no research revealed that more
of 45 IHEs and these were invited to consensus on the best approach students with ASD accessed data indicated that the students
participate in a telephone survey. to provide supports. Larger IHEs the support services at IHEs that with AS or ASD who received
Thirty-one of the 45 IHEs indicated were significantly more likely to charged a fee for their supports supports stayed in college at a
that they offered/provided specific offer specific support programmes that at those that do not charge, higher rate than the students with
support services above and beyond that were smaller IHEs (only 10% of but the reasons for this finding are and without disabilities who did not
services typically offered by IHE the IHEs offering specific support not immediately apparent. It might receive additional supports.
disability offices and 30 of these programmes having enrollments be that the fee-based programmes
IHEs agreed to complete the survey. of
Background
Whatever the role of the peer- with instructors and classmates, —— Course recommendation, based —— Providing assistance to students as
mentor, the involvement of fellow, roommates, dating, etc.). The on the learning strengths, abilities they navigate through the day-to-
typically-developing, students is program also interfaces with existing and interests of each student. day demands of a college lifestyle
an important if not crucial element support services on campus such Collaborating with Residence
—— Individual and small group
in contributing to the success of as the Office of Disability Services Hall staff to ensure proper living
mentoring.
creating a more Autism Friendly (ODS), Center for Teaching and accommodations are being
college environment, as it not only Learning (CTL), and Residential Life. provided.
reduces the likelihood of stigma but The program also seeks to promote Social Skills Supports include:
Boston University, through its
also increases levels of awareness, awareness and understanding —— Individualized assistance from
Office of Disability Services, offers
knowledge and empathy (Baron- of ASDs throughout the campus program staff for student
Strategic Education Services
Cohen & Wheelwright, 2004; community through education, involvement in campus
(SES) for students with psychiatric,
Matthews et al., 2015). training, and collaborations with organizations, clubs and extra-
attentional and developmental
University programs, faculty, staff, curricular activities
conditions that might impact on
To illustrate the variability in and students.
—— Staff lead and student driven skill the student’s studies. Services
programmes in IHEs in the USA, a
building group sessions that role are provided for students with,
number of examples are detailed Marshall University’s West
play and teach appropriate social for example, ADHD, head injuries
below. As noted by Hurewitz & Virginia Autism Training Center
skills fit for a college lifestyle and concussions, mood disorders
Berger (2008), some of the first provides academic, social and
(depression, mania, bipolar
pilot integrated/support based life skills training through The —— Individual and small group disorder), anxiety disorders (OCD,
programmes for students with College Program for Students with mentoring sessions Supported PTSD, panic and phobic disorders),
autism were introduced at Alabama, ASD, which was established in access to campus activities eating disorders (anorexia, bulimia),
Marshall and Boston Universities. 2002. Students participating in the and organizations that provide psychotic disorders, personality
At this point in time, the University program must meet acceptance opportunities and develop social disorders, and autism spectrum
of Alabama, ASD College Transition criteria for Marshall University skills. disorders, including Asperger’s.
and Support Program (UA-ACTS) and are admitted to The College
Living with Autism as a University Student at Dublin City University:
provides individualised services to Program through a separate
Independent Living Skills Supports As detailed on their website,
help students develop appropriate application process.
include: “Strategic Education is
skills for self-advocacy, daily living,
—— Teaching effective living skills individualized, practical
and social interactions. According Academic Supports include:
designed to meet the needs of assistance that helps students
to publicity material, the program ——Teaching and modeling self-
individuals transitioning into with psychiatric, attentional and
provides each UA-ACTS student advocacy skills for effective
Developing an Autism Friendly University
adulthood developmental disabilities to
Study Background, Aims and Methods
with a therapist-mentor, who meets communication with campus
approximately three times weekly faculty and staff
with the student to provide services
—— Individualized strategies designed
in academics (including organization
and implemented to teach
and planning of study time, using
classroom attendance efficiently,
students executive functioning Whatever the role of the peer-mentor, the
skills
prioritizing of assignments, involvement of fellow, typically-developing,
preparation for exams, etc.) as Students and program staff
well as social and daily living skills
——
students is an important if not crucial element
working together to determine
(focusing on the social aspects of and request reasonable in contributing to the success of creating a more
college life, including interacting accommodations Autism Friendly college environment
10
9
Overview
achieve their goals in college. SES This search provided us in the sense that both mentors and Students select their mentor based
services promote the skills and predominantly with personal stories mentees live in on-campus housing, on preference and suitability, as
support necessary for students and articles that were shared allowing for daily support. In order well as level of needs required. The
to be successful and satisfied in by Universities, having obtained to participate in the programme, learning strategist and academic
their educational pursuits. SES consent from their enrolled student mentors must meet the requirements coach offer a nice alternative to
provides individualized one-to-one on the Autism spectrum. The most set out by the University, as well as the peer programme, as students
weekly strategy sessions. We work popular Google search result adhere to their code of commitment. with Autism gain the opportunity
with students to facilitate access associated with the current study All mentors must, therefore, to deal with individual challenges
to reasonable and appropriate was College Autism Network (CAN). complete two training sessions once and identify their strengths and
accommodations. We also refer the selection procedure has been weaknesses in forming a strategy of
students to other resources on CAN provides a list of current completed, attend monthly meetings coping with these challenges
campus and in the community initiatives that are underway in with fellow support staff, ensure
and coordinate with other various colleges and institutions they are available every Wednesday Texas Tech University has also
Boston University offices. When across the United States. At present, between the hours of 4-7pm, and adopted this approach, through
circumstances require, we can assist the list comprises 42 Universities fulfill their role for a minimum of one the Connections for Academic
in facilitating leaves of absences.” that have piloted Autism friendly academic year. Success and Employment
programmes since 2010. Overall, Programmes (CASE). CASE
During the weekly strategy sessions, the initiatives provide support for The level of commitment required provides students with an assigned
students receive help to help the application of peer mentoring is clearly outlined by the college. learning specialist in order to
develop better skills in the areas of programmes as a means of This not only reflects the values of develop these individual solution-
time management, planning and intervention for students with ASD the support staff, but also of the based approaches to coping with
organization, study and test taking, at postsecondary level. Although mentors who enroll to participate in challenges that arise throughout
self-advocacy and interpersonal the majority on this list have the programme. The goal is made college life, predominantly of social
skills (i.e. approaching professors, implemented peer mentoring as clear through the intentions of those or organisational origin. Additional
resolving peer conflicts, etc.). a means of support, this support involved, in the hope of providing the support is also offered from a range
Living with Autism as a University Student at Dublin City University:
often comes at a financial cost that highest quality of additional support of other college services, such as;
To find information on unpublished may be beyond the means of many to students with Autism. academic advisors, campus activity
initiatives in higher education students. leaders, as well as counseling and
settings, we explored the websites Adelphi University in New York career services
of Universities nationally and Grand Valley State University offers similar services for young
internationally using Google and (GVSU), Michigan, is recognised as people with Autism at third level However, although this provides
Developing an Autism Friendly University
Study Background, Aims and Methods
employing key search terms to a University providing additional education. However, in addition to students with an extensive support
explore what HEIs have been doing support for young people with the peer mentoring programme, network, advocates of the peer
in this area. The key search terms ASD, due to the introduction of the which is the most commonly used programme may argue that its
used were: Autism friendly campuses, Campus Links Peer Programme in approach, students with Autism strength lies in enhancing the social
Autism friendly colleges, Autism 2012. The programme is facilitated enrolled in Adelphi University are interaction between both mentor
friendly higher education institutions, by the University’s Disability Support given the option of either meeting and mentee, and, in turn, overcoming
Autism friendly postsecondary Resources Office. The Resource with a peer mentor or a designated anxieties associated with forming
programmes, ASD and college Office carries out the student mentor academic coach and learning close bonds with fellow students.
students, young people with Autism training, enabling students to act strategist. Both options are there to As these services are still in their
in college, peer perception of Autism, as mentors to their peers on the be availed of twice a week as part of early stages of development,
Autism and higher education. Autism spectrum. GVSU is unique the Bridges to Adelphi programme. the additional cost involved in
11
12Background
facilitating these programmes listing of the College Choice 25 Best Featured on the listing is Syracuse University, New York, which,
remains too high for many parents. Colleges for Students with Autism through its Lawrence B. Taishoff Center for Inclusive Higher
This heightened cost is evident in the for 2017 – as determined based on Learning serves students with any intellectual or developmental
ASD College Transition and Support features such as promoting self- disability, including ASD. The university also supports students
Programme that is provided by the advocacy and development across with ASD through scholarships, transition programs, and social
University of Alabama. social, academic and vocational groups. Notable resources and services include: Peer-to-peer
levels - is presented. Each of the mentoring for academic and social support, classes in disability
The programme itself begins with programmes listed go above and studies, The Disability Cultural Center, Student-centric
a two-day orientation programme beyond the services typically offered academic advising, Access to the Center on Human Policy,
before classes start, so that students by a Disability Resource Center. the Burton Blatt Institute (provides employment resources for
and parents have the opportunity people with disabilities) and the Taishoff Center.
to familiarise themselves with the
campus. The mentoring programme
then provides students with one- Also listed are:
on-one discussions with mentors,
group meetings every second week, —— University of Alabama (UA-ACTS program);
four hours of designated study time
—— George Mason University, Virginia (Mason Autism Support
per week, and assistance following
Initiative (MASI), a comprehensive (though fee-based)
graduation on seeking employment
program that gives additional, extensive support to students
opportunities. The cost of the ASD
who are on the autism spectrum. Students have access to skill-
College Transition and Support
building classes and groups to develop career-readiness, social
Programme is $7,200 for the Fall and
techniques, and academic skills;
Spring Semesters combined, on top
of standard tuition and housing fees, —— University of Arizona (UA Autism Collective) – offering a
as well as an additional $1,100 per number of resources, services, and educational programs to
Living with Autism as a University Student at Dublin City University:
Summer session [insert link here]. promote holistic health among its ASD community;
Because programmes to provide —— Kent State University, Ohio (the Autism Initiatives, housed
additional services for students with under Kent State’s Division of Diversity, Equity, and Inclusion
Autism are not standardised and – an initiative where students work closely with a faculty or
due to a insufficient reseach in this staff member, who will act as their advocate. Other groups
and supports are: PALS (Partnering for Achievement and
Developing an Autism Friendly University
area, it is difficult to identify which
Study Background, Aims and Methods
ones produce the best outcomes Learning Success), in which a student with ASD is partnered
for students. In addition identifying with a neurotypical student with each acting as mentor and
the most cost effective programmes companion to one another, and College Success for Students
is difficult. What is clear, however, with Asperger’s or Autism, a program that provides self-
is that the cost of available advocacy training, job and career assistance, KSU’s Autism
programmes varies greatly and Diversity Program;
some would appear to be outside the —— Grand Valley State University, Michigan (the START -
financial means of students. Statewide Autism Resources and Training – Project);
Other programmes are detailed on
the College Choice website, where a
13
14Background
—— Drexel University, Philadelphia (Drexel Autism Support —— Rutgers University, New Jersey (Rutgers’ College Support
Program – a student-centric program that includes a Program (CSP), which works specifically with students
Personalized Assessment for Student Success (PASS) plan, who fall somewhere on the Autism Spectrum. Assistance
PASS monitoring with the AJ Drexel Autism Institute, PASS provided includes scholarship and funding opportunities and
case management with professional staff, Psychoeducational, personalized assistance with activities of daily living such as
social, and adaptive evaluation opportunities and workshops daily dorm living, academic planning, socializing, etc. Other
in life skills, social development, academic success, and career resources and services offered through the CSP include:
planning); weekly meetings with a personal coordinator, help defining
academic and life goals, identifying and utilizing social skills
—— Appalachian State University, North Carolina (hosting
appropriate for university and adult life, work with trained peer
an affiliate chapter of Autism Speaks, whose mission is to
mentors and referrals for future employment or education
promote options and opportunities for individuals with ASD.
opportunities;
Students with ASD can access, among other things, a range of
events, social networking, academic resources, career services, —— University of West Florida (the Argos for Autism Program
high school to college transition programs and counseling); (AAP), promoted by the Student Disability Resource Center on
UWF’s campus is a service that provides academic support,
—— University of Michigan (also home to an Autism Speaks
social and community involvement, life skills, and career
chapter - students with ASD have access to: ASD specific
planning to its students with ASD. Students who join the
scholarship opportunities, housing accommodations, exam
program will work weekly with a coach to address their needs
proctors, CAPS: The Autism Spectrum Self-Advocacy Group
in the areas of academia, social life, daily living, and career
and academic counseling);
preparation;
—— University of Connecticut (UConn’s SEAD - Students with
—— Utah State University (ASSERT - the Autism Support Services
Autism Spectrum Disorder) - program building skills, self-
in Education, Research, and Training) - program. Although
advocacy, and confidence. UConn’s ASD inclusionary efforts
primarily an academic resource for those in special education,
Living with Autism as a University Student at Dublin City University:
is also supported through the Center for Students with
social work, and rehabilitation programs, ASSERT’s mission
Disabilities, which provides students with access to all the
is to work with students with ASD to provide research-based
same opportunities and experiences as the rest of campus.
support. USU’s Disability Resource Center also makes a wide
This includes study abroad assistance, scholarship and
range of services and resources available to its students;
funding assistance, access to technology that enhances both
independence and academic success, research opportunities, —— St. Joseph’s University, Philadelphia (the Kinney Center
Developing an Autism Friendly University
social networking such as AHEADD (Achieving in Higher ASPIRE Program - one of the best known transition programs.
Study Background, Aims and Methods
Education with Autism/Developmental Disabilities); Program staff work closely both with the student and with
the larger campus community—professors, administration,
interdepartmental staff, residence life—to provide holistic
academic and social support to its ASD students. Facets
Whatever the role of the peer-mentor, the of ASPIRE include: crisis intervention and prevention, time
management strategies, independent living and social skills
involvement of fellow, typically-developing, training, student mentoring, athletic involvement opportunities
students is an important if not crucial element and access to The College Bound Retreat, a summer seminar
in contributing to the success of creating a more that prepares students for college life;
Autism Friendly college environment
15
16Background
—— Portland State University, Oregon (emphasizes networking, research, best practice analysis, and student collaboration.
partnership, and collaboration to create an inclusive learning In year 1, students focus on, and are coached through, issues
environment. Funded by TPSID - Transition and Postsecondary of independence, social and academic strategies, and self-
Programs for Students with Intellectual Disabilities - The advocacy, in Year 2, students learn about developing identity,
Disability Resource Center at PSU offers a range of resources, reframing their understanding of self in positive ways, and how
activities, and opportunities for its students, including The to navigate unwritten social rules, in Year 3, students build on
Invisible No More Project, which recognizes, celebrates, and what they learned in the first two years to begin thinking about
supports students with invisible disabilities); their careers. They work on job shadowing, mock interviews,
resume building, and more. The final year builds on the third in
—— Western Kentucky University (Kelly Autism Program, which
that students gain internship experience, volunteer experience,
offers, among other things, educational support through
attend career fairs, etc.);
personalized academic plan assistance, tutoring, community
involvement, job coaching, social activities); —— Eastern University, Philadelphia (the College Success Program,
CSP - was designed specifically for students with ASD.
—— University of Missouri (Mizzou’s Thompson Center for Autism
Partnered closely with the Cushing Center for Counseling and
& Neurodevelopmental Disorders provides training and service
Academic Support, the CSP ensures its programs address
programs to its students as well as the larger community.
not just the academic well being of its students, but also their
These services span the diagnostic, medical, and treatment
social, mental, and physical health. Eastern CSP staff also
needs for those with ASD. Mizzou also has a multi-functional
work closely with faculty, staff, and administration to provide
Disability Center); Texas Tech University (CASE - Connections
ASD-specific training, consultation, and understanding.
for Academic Success and Employment - program, for
Other services provided by the CSP include pre-fall semester
helps students navigate the ins and outs of college life; The
orientation for first-year students, Individual counseling,
Transition Academy, housed in the Burkhart Center for Autism
weekly skills groups that focus on academic, daily life, cultural
Education and Research, helps students develop job and social
support, and social issues, weekly support groups that focus on
skills Its TECHniques Center is a unique tutoring program that
Living with Autism as a University Student at Dublin City University:
perceptions and being a college student and facilitation and
provides holistic coaching and tutoring to students with ASD);
liaison support with faculty, staff, and university departments
—— University of Idaho (the Disability Support Services offers and community events and outings);
many opportunities for those with Autism/ASD to connect
—— Adelphi University, New York (Bridges to Adelphi program - is
with staff and peers, develop academic and social strategies,
Among the services and resources available are twice weekly
and participate in curricular and extra-curricular events. The
Developing an Autism Friendly University
meetings with an academic coach and learning strategist,
Autism Spectrum Alliance is just such a group, housed under
Study Background, Aims and Methods
one -on-one counseling to reduce anxiety, stress, and to
the Raven Scholars Program. Raven Scholars is an award-
improve time management, organizational, and social skills,
winning transition program that provides tailored services to
collaboration with a vocational coach to identify areas of
its students with Autism/ASD, including peer mentoring and
interest and strengths, assistance with resume writing and
academic advising, daily or weekly planning meetings with
mock job interviews and peer mentorship);
program staff, study group opportunities, life and social skills
classes and service learning opportunities);
—— University of Tennessee Chattanooga (Mosaic - developed by
UTC’s Disability Resource Center - Mosaic is steeped in ASD
17
18Background
—— Fairleigh Dickinson University, New Jersey (COMPASS Even a cursory overview of these of Psychology and Speech Pathology
program, designed specifically for students with ASD to programmes highlights the or the School of Occupational
improve the rates of graduation and gainful employment. This diversity of services and supports Therapy and Social Work. Mentees
fee based individually tailored program provides services such offered to students. Many of these are paired with a specialist mentor,
as peer mentorship with upperclassman, monthly social events, programmes do, however, feature who provides individualised support
two hours of individualized, hands-on academic advising on a a peer-mentoring component. based on need. Topics may include
weekly basis, one hour of individual counseling and one group The peer mentoring approach has time management, academic
therapy session on a weekly basis and a summer transition become the most commonly applied performance and communication
orientation; approach to student support due with teaching staff and peers. CSMP
to the positive outcomes that have mentee-mentor pairs meet weekly
—— Marshall University, West Virginia (College Program for
been associated with its successful for an hour to discuss issues pertinent
Students with Autism Spectrum Disorder – described above);
implementation (Hart, Gigal & to the mentee (e.g. managing stress,
—— Bellevue College, Seattle (Autism Spectrum Navigator – Weir, 2010; Nevill & White, 2011; approaching support staff for
ASN – program, which works closely with its students in the Hamilton, Stevens & Girdler, 2016). help). Prior to the commencement
areas of social interaction, study habits, self-advocacy, and of the CSMP, mentors underwent
self-regulation. Bellevue offers peer mentoring, career prep, Because evidence suggests that specialist training workshops that
campus awareness programs and skillbuilding but the ASN the provision of peer mentoring covered both generic topics (e.g.
program also offers distinct features such as: members attend may improve third level education roles of a mentor, resources available
cohort classes in conjunction with their other classes. These outcomes of students with ASD, on campus, ways to engage with
cohort classes cover, among other things, career preparation Curtin University, in Western mentee, confidentiality and
skill building, stress-management, occupational-wellness, Australia, implemented the boundaries), as well as ASD-specific
interpersonal- communication. In addition, ASN staff are Curtin Specialist Peer Mentoring topics (see Hamilton, Stevens &
happy to work with students’ parents and faculty to improve Programme (CSPM), modelled, Girdler, 2016 for further detail
communication and inspire better insight into the lives of according to the programme regarding mentor training).
Living with Autism as a University Student at Dublin City University:
students with ASD). developers (Siew, Mazzucchelli,
Rooney & Girdler, 2017) on similar In describing and reviewing the
programmes provided by Cambridge programme, the authors report
University in the UK (see Hastwell preliminary evidence that a
et al, 2013) and York University in specialised support program can
Canada (AMP; Bebko, Schroeder & improve the well-being of students
Developing an Autism Friendly University
Study Background, Aims and Methods
Ames, 2011), as well as on strategies with an ASD in a university setting.
for supporting students with ASD They recognize that although several
identified in the literature (Wolf, specialised programs exist and have
Brown & Bork, 2009). been implemented at universities,
few published evaluative studies
As described by Siew et al (2017), the are available. They pointed out
peer-mentoring program is centred that the results replicated many
on the provision of “specialist peer of the preliminary findings from
mentors”. “Specialist peer mentors” comparable university programs
are Curtin University postgraduate and, like mentoring-program
students, recruited from the School participants at York University
19
20Background
(Ames, McMorris & Hancock, 2010) continue to aid the young person as planning, specifically ensuring that intervention, the College and Living
and Sheffield Hallam University, they progress into adulthood and families and students have the Success (CLS) program. Preliminary
participants in the CSMP were various stages of their lives. tools needed to make informed evidence supports the feasibility
highly satisfied with the program Important research is also currently choices and take necessary steps and acceptability of both programs,
(Madriaga et al, 2008) and they underway at Virginia Polytechnic (e.g., remediating identified skill but behavioral outcomes were
conclude that interventions that Institute and State University deficits) to increase the likelihood inconsistent across participants and
meet an individual’s needs, while also (Virginia Tech) in assessing the of a successful transition out of high interventions. Given the preliminary
targeting environmental barriers Stepped Transition in Education school. In Step 2, college students findings, they concluded that
such as attitudes of others, are likely Program for Students (STEPS) with ASD receive fairly intensive expanded research on psychosocial
to be the most effective in improving for young people with ASD. The supports and interventions, including and computer-assisted intervention
the outcomes of young adults with research is led by Dr. Susan White, individual counseling, structured approaches for students with ASD is
ASD. who specializes in this area, having support services, social integration warranted.
published a considerable amount activities and coaching to promote
An important issues raised by of work enhancing educational academic and social success. STEPS Closer to home, research has also
the authors was the fact that the environments for people on the is currently being evaluated in a continued to progress across Ireland
social difficulties that arise for Autism spectrum (White, Ollendick & randomized controlled trial (RCT), and the UK. In 2014, Autistica UK,
people with ASD are influenced by Bray, 2011; White et al., 2013; White with participants assigned to either an advocacy agency for those with
the perceptions, judgments and et al., 2016). STEPS targets improved STEPS or ‘transition as usual’
social decisions formed by those self-regulation (SR) and self- (TAU), after which time they
around them. Although the Curtin determination (SD) in young people can enroll ‘open-label’ into
University program dealt specifically with ASD, in the hope that it will yield STEPS (White et al., 2017).
with psychology and occupational positive outcomes with respect to
therapy students as peer-mentors, college adjustment and functional Motivated by the paucity of
it is possible that if applied on a behavior. STEPS is comprised of two research on how to support
Living with Autism as a University Student at Dublin City University:
broader scale, with appropriate levels (or steps), which match the most effectively the growing
supports, peer mentor programmes student's particular needs in relation number of young adults
could be rolled out more widely as to transition planning. In Step 1, with ASD enrolled in higher
an approach to developing and students facing transition (i.e., have education institutions, White
supporting young people with ASD identified the college they will attend et al. (2016) published a
at third level (Gelbar et al., 2014; (either 2-year or 4-year institution) report on their pilot trial
Developing an Autism Friendly University
Study Background, Aims and Methods
MacLeod & Green, 2009). Education but are still in high school) and their of two novel intervention
of the mentors would also serve caregivers receive information to programs developed for
to increase knowledge about ASD assist in transition planning, undergo college students with ASD.
and, for the student with ASD, the readiness self-assessments (to In their pilot study, college
intensity of the transition to third identify degree of preparedness students with ASD (n = 8)
level is lessened by peer-mentor for post-secondary school) and were randomly assigned to
programmes and the skills that are participate in interactive sessions one of two new programs –
taught. Key skills include social, online and in person to promote either an intervention based
organisational and practical skills, self-knowledge and determination. on a virtual reality – Brain-
which are deemed as transferable The goal of Step 1 is to assist Computer Interface for ASD
skills in the sense that they will families and students with transition (BCI-ASD) or a psychosocial
21
22Background
Autism, outlined that of the £4 run in select areas across the UK, institution or work placement). Spain; and Technical Uni Eindhoven,
million spent each year on Autism such as Lancashire, Leicestershire, Other supports offered from the Netherlands). Since 2016, Leeds
research in the UK, an estimated 7% Northamptonshire, North East Disability & Dyslexia Services Beckett University has continued
is spent on research into adults living England, Scotland and Wales. include study skills sessions, to be the project in the UK, under the
with ASD. With this in mind, Autistica agreed on an individual basis, an leadership of Dr Mark Fabri. The
have launched a new programme, The Royal Holloway, University orientation buddy during Welcome initiative works in conjunction with
‘Ageing with Autism’, in collaboration of London offer a comprehensive Week), initial support and advice students on the Autism spectrum to
with Newcastle University, which service to students with social on relevant assistive technology, assist them in making the transition
aims to provide insight into the or communication difficulties. organisation of exams access from second level to third level
challenges that adults face in As detailed on their website, a arrangements, dependent upon the education. Unlike other initiatives,
transitioning throughout the various wide range of academic supports recommendations contained in the Autism &Uni aims to adopt a more
stages of life with Autism (Autistica are offered. Among these are student’s current medical evidence, integrative approach within the
Report, 2014). permission to record lectures while in advice regarding application for Autism community at third level.
attendance, access to class material additional support via Disabled Rather than incorporate elements
Based on our search results, support at least 24 hours in advance, where Students Allowance. Supports from of the popular peer mentoring
initiatives for students with Autism in possible, access to more frequent other professional services in Royal programme, Autism & Uni gains
Universities across the UK appears one-to-one meetings with a personal Holloway include library support insight from the students’ first hand
to have been funded mainly by the adviser, if needed, additional time (such as flexibility with loans, help experiences by conducting interviews
National Autistic Society and the to respond to oral questions in with locating material, etc.), the and questionnaires, which provide
Disabled Student’s Allowance. A workshops, tutorials, seminars or possibility of requesting priority to the grounds for the development
wide range of support is available appointments, exemption from accommodation in the first year of Toolkits and Guides then used to
to students through the disability being asked to read passages aloud and permission to stay in halls in the assist both the student with ASD
service, including: support from an in class, if needed and requested, second and third years, a pre-arrival as well as academic professionals.
adviser who will provide advice and available upon request and with visit to College accommodation in According to Fabri and Andrews
Living with Autism as a University Student at Dublin City University:
guidance about the potential impact some input from Disability & Dyslexia order to determine accommodation (2015), Autism & Uni is unique in the
of Autism on their studies and how Services, help and advice with needs, the possibility of participating sense that unlike other interventions
this can be accommodated, drop- discussing the student’s disability in a two-day residential orientation that tend to emphase student
in sessions to meet with a Disability with relevant parties (e.g. host programme called Unistart in early deficits, it focuses on student
Adviser, access to Student Enabling September before starting your first strengths.
IT (SEnIT) Suite which has assistive year.
Developing an Autism Friendly University
Study Background, Aims and Methods
software such as mind mapping Autism & Uni advocates for the
software, support applying for Autism & Uni was a research initiative use of technological tools and
special exam arrangements – such as Closer to home, research has funded between 2013 and 2016 interventions as a means of
extra time, use of a PC, opportunity by the European Union under the enhancing students’ strengths, as
to sit exams in a smaller venue,
also continued to progress Lifelong Learning Programme and these can be tailored in a manner
assistance with requesting copies of across Ireland and the UK facilitated partnerships across five suited to each individual. The
handouts or lecture slides in advance European countries (Leeds Beckett Autism&Uni Online Toolkit provides
of teaching sessions and regular University UK where it initiated, students with access to information
specialist mentoring support. Kekuspuito Vocational College, and strategies to help students
Finland; Academy of Humanities and to overcome the challenges they
Similar peer programmes are Economics, Poland; Autismo Burgos, typically encounter during the
23
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