Supporting Students with Autism at Higher Education Institutions in Saudi Arabia

Thesis Proposal Submitted By Hanan Almasoud Partial Fulfilment of the Requirements for Doctorate Degree In Special Education, Autism (Adults) 2011

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Introduction In recent years, the number of people diagnosed with autism has increased dramatically (Emmons and Anderson 2005). According to Singh et al (2001), autism and its associated subgroups (ASD) affect more than half a million people in the United States, and this figure has grown significantly over the last decade. This has led to increased concerns and the promotion of autism as an international issue. According to Taylor and Knott (2007), arranging diagnostic assessments for college or university students who appear to be in that spectrum remains difficult. It seems that support services are limited to students who arrive at university with an existing diagnosis of autism (Taylor and Knott 2007). In regards to higher education institutions in Saudi Arabia, they are still not able to meet the special needs of these students. Due to this lack of services, students who have been diagnosed with ASD do not have the opportunity to continue their higher education. In addition, the lack of knowledge and awareness about ASD also leads to a misunderstanding of the behaviour of students who have no official diagnosis and have already been accepted to college or university, which can have a negative impact on their academic progress and postsecondary education experience. As a member of the teaching staff of the Special Education Department at KSU, I hope that this research will enhance the services provided for adults with ASD by making the teaching staff more professional and efficient in meeting the needs of these students with ASD in higher education institutions, which will reflect positively on the achievement and progress of students affected by ASD, making their experiences at colleges or universities less stressful and more pleasant. Literature Review According to a study conducted by Sahar Alkhashrami (2011) on 85 male and female students with special needs at King Saud University (KSU), students with disabilities still face some difficulties in coping with their disability, although there have been some efforts devoted to improving disability services at KSU. She thus indicated that more studies are needed in order to develop a better understanding of the problems confronting students with disabilities in higher education institutions, as well as for removing these barriers, in order to enhance the inclusion process. In regards to the inclusion of students with ASD, there is still has a long way to go, and little, if any, research has been conducted about meeting the needs of this population segment in Saudi higher education institutions. According to statistics from the Disability Services Centre at KSU, the services provided for students with disabilities are limited to students with visual impairments, physical Page | 2

disabilities, hearing impairments, learning disabilities, and attention-deficit hyperactivity disorder (ADHD), which shows that there is a significant need for specialised services for students with autism if their unique needs are to be met in an inclusive environment (Figures 1, 2). VanBergeijk, Kiln and Volkmar (2008), believe that, in order to help these students succeed in post-secondary education, they will need specific support and intervention, which includes planned transitions and a range of supportive and appropriate accommodations.

Figure 1: The number of students according to their special needs (Disability Services Centre, King Saud University, 2008-2009)

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Figure 2: The number of the students who have special needs according to their colleges, (Disability Services Centre, King Saud University, 2008-2009)

Taylor (2005) pointed out that it is difficult for staff at higher education institutionsif they are not familiar with the implications of the conditionto understand the need for adjusting academic practices: Since autism is a condition about which few have any real knowledge, it may be difficult for many higher education staff to appreciate the difficulties that students with an autistic spectrum disorder may face in a higher education setting (YEAR, pg. xx). The Difficulties Faced by Adults with Autism A diagnosis of ASD carries with it many difficulties and challenges for the diagnosed person. It affects the individuals life in different ways, depending on the severity of the condition and how much support the person receives from their family and community. This section will discuss the difficulties faced by adults with ASD, especially the problems associated with their academic life while at college or university.

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First, in terms of language and communication issues in adulthood, individuals with ASD might have problems organising their ideas and putting them into a coherent sequence (Myles and Adreon 2001). They also have problems understanding non-verbal cues, such as eye contact, gestures, and facial expressions. This affects their ability to communicate with others and prevents them from engaging in conversation, which in turn leads to missed social opportunities. Moreover, they have difficulties considering other peoples perspectives in a conversation, which causes one-sided responses and difficulties in recognising whether the other person is still interested in the discussion (Myles and Adreon 2001). Some researchers, however, indicate that language issues might improve over time, whereas social interaction remains impaired in the long term (Taylor and Knott 2007). In terms of social difficulties, individuals with ASD have problems understanding social rules, which can lead to confusion in social situations. In addition, being in a group of people can also be challenging and overwhelming for them (Gerland 2000; Jamieson and Jamieson 2004). With regard to friendships, some prefer to be left alone and not have friends (Eastoe 2005), while others have the desire to make friends but lack the social skills necessary to form and maintain relationships, with the result being social exclusion (Jamieson and Jamieson 2004; Myles and Adreon 2001). Another social issue is that ASD sufferers can become targets for bullying and teasing, which results in depression and emotional problems (Beardon, Martin and Woolsey 2009; Gillberg 2002). As for academic challenges, the first days at university can be confusing and overwhelming for the student with ASD due to the crowds and the new environment (Harpur, Lawlor and Fitzgerald 2004). They can also experience enormous anxiety when a timetable is changed, when they are in unpredictable contexts, or even when they are in normal situations (Taylor and Knott 2007; Dubin 2010). Additionally, students with ASD have problems with self-organisation, planning their time, and meeting deadlines (Harpur, Lawlor and Fitzgerald 2004; Taylor and Knott 2007). According to Taylor and Knott (2007), their most recognisable academic difficulty is failing to hand in coursework on time, due to poor timekeeping. Furthermore, they often find multi-tasking difficult and prefer to finish tasks one at a time instead of starting and working on many tasks simultaneously. Another academic challenge relates to problem-solving skills. Students with ASD might show an advanced ability in solving problems that are related to their special interests, but lack these skills or show ineffective approaches when it comes to solving day-to-day problems (Myles and Adreon 2001). They also fear trying new things (Gerland 2000) or making decisions in unfamiliar environments because they cannot predict the effects of their choices Page | 5

(Harpur, Lawlor and Fitzgerald 2004). In addition, a teaching staff may misunderstand or incorrectly interpret the odd behaviour of students with ASD in public spaces, such as lecture rooms or halls (Taylor and Knott 2007). Furthermore, students with ASD lack social networks, and this might lead to anxiety. For example, having missed a lecture, a student with ASD often has no one to lend him notes. Students with ASD could also be reluctant to ask fellow students or staff members for help when instructions are unclear to them, which can make them frustrated and depressed (Taylor and Knott 2007). They may also find working in groups challenging due to the social demands required and their inability to adjust to the groups rules. Conversely, they sometimes participate by doing all the work by themselves, which is appreciated by their peers, who will have nothing required of them (Gillberg 2002). The comprehensive ASPECT consultancy study (2006-2007) aimed to explore the academic challenges faced by students with a formal diagnosis of Asperger syndrome (AS) or High-functioning autism (HFA), as well as students without a formal diagnosis, in higher education institutions in the United Kingdom. It also examined the local authority services provided for adults with AS or HFA. Luke Beardon,of the Sheffield Hallam University Autism Centre, a professional in the field and a parent of an adult in the spectrum, and the late Genevieve Edmonds, an author with AS, devised a questionnaire to examine the possible challenges and the amount of support that learners received at college or university. A total of 238 questionnaires were received, and 135 students reported facing challenges at college or university. These challenges were grouped into four categories: social interaction, course structure/curriculum requirements, college or university social environment, and understanding of Asperger syndrome or high-functioning autism (self and other) (Beardon, Martin and Woolsey 2009). The findings showed that 54 students reported challenges in social interaction, such as working in a group, and 35 had problems meeting curriculum demands or with the course structure. In terms of the understanding of AS and HFA, 32 students reported challenges related to peoples perspective of the condition, or of difficulties associated with their own understanding of the condition. Meanwhile, 29 students identified social environment difficulties at college or university (Beardon, Martin and Woolsey 2009). The second part of the questionnaire investigated the levels of support provided. Fifty per cent of the students with AS, and 60% of those with HFA, indicated that they received the support they required at college or university, whereas less than 19% of the students who were not diagnosed formally felt they had been supported. From these figures, it can be argued that formal diagnosis is the gateway to accessing services. However, this can be problematic because of the scarcity of Page | 6

effective diagnostic services for adults. As a result, many students at colleges and universities remain undiagnosed and therefore do not have access to the proper services (Beardon, Martin and Woolsey 2009). It seems that developing a deep understanding of the difficulties and challenges faced by students with ASD is essential to providing suitable assistance and effectively support their special needs in higher education institutions. Research Settings and Methods The study will be conducted at a public university in the capital city of Saudi Arabia and the participants will be students with ASD; specifically, those students who study at an undergraduate level and are available at the time of data collection will be invited to participate. Students qualifications for study shall include the satisfaction of set HFA scores, being in current sessions at university, and studying as a full-time student. In addition, the administrative staff and the teaching staff from the same university will be invited to participate in the study. The anticipated duration of the study is three years. In ordered to collect qualitative and quantitative data, the research method will be a questionnaire; open-ended, non-standardised interviews; a literature review; and content analysis of relevant documents. The teaching and administrative staffs will be asked to complete a questionnaire aimed at assessing knowledge about autism in regards to the causes, characteristics, diagnosis criteria, and autism treatment, in order to examine their current understanding of the condition and to identify training needs. Questionnaires allow researchers to collect data from a large group of people in a short period of time and at a low cost, in addition to producing satisfying quantitative data. Interviews with students with ASD will be conducted in order to understand their particular needs and to figure out what can be done to support them during their time at university and after graduating, according to their unique needs. The administrative staff and supervisors of disability services centres will be interviewed in order to clarify their role(s) in responding to the special needs of these students. Open-ended questions and non-standardized interviews involve researchers non-utilization and non-adherence to fixed content and structure in questioning respondents to obtain answers with value for analysis. Such a model of interview suits researchers data collection through enabling them to modify their questioning models, techniques, and content based on conceptions they gain about individual respondents during interviews. They facilitate interviewers procurement of specific information from each respondent according to variations in their different experiences and opinions about the subject Page | 7

of interview. Content analysis and literature review will be used to analyse existing information that is relevant to the research. Research Questions Thematic Questions for ASD Student Respondents What is your opinion on the current services provided by your college or university? Do the current services provided by the disability services centre at your college or university meet your needs? Do you recognize any improvements in your learning results? Thematic Questions for Supervisors of Disability Services Centres How should the university respond to the academic, social, and emotional needs How does the staff address the needs of students with ASD? How does the centre respond to the training needs of the teaching staff at the of the ASD student population?

university? The following questions will be answered using the data analysis and content analysis methods on relevant documents: What is the appropriate provision for students with ASD in higher education What can be done to support them? What are the necessary changes that must be made in order to make the institutions?

university eligible for inclusion? Contribution to Knowledge and Impact It is hoped that the findings of this research will help widen the current services provided for students with disabilities at higher education institutions to include students with ASD, and to help make the universitys environment more inclusive for all students, including those with abilities. This will be a major step toward enhancing public services provided for adults affected by ASD in Saudi Arabia, and will increase the opportunities for more able students with ASD to advance their learning beyond high school. By offering the right assistance, students with ASD will be able to achieve and succeed as other students do. Page | 8

Furthermore, raising the awareness of the teaching staff of the condition will help with enhancing the evaluation process that is aimed at identifying if an educational disability exist or not. Without offering special training, many students who have no official diagnosis and are already at college or university can be misunderstood, and may miss many learning opportunities.

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References Alkhashrami, S. (2011). Evaluation of the related support services at King Saud University for students with special needs. King Saud University Journal, Journal of Educational Sciences and Islamic Studies 1(23), 99-134. Beardon, L., Martin, N. and Woolsey, I. (2009). What do students with Asperger syndrome or high-functioning autism want at college and university? (In their own words). Good Autism Practice 10, 3543. Dubin, N. (2010). Asperger syndrome and anxiety. Asperger United , 13. Eastoe, G. (2005). Asperger syndrome: My puzzle. The United States of America: Author House. Emmons, P. and Anderson, L. (2005). Understanding sensory dysfunction: Learning, development and sensory dysfunction in autism spectrum disorder, ADHD, learning disabilities and bipolar disorder. London: Jessica Kingsley Publishers. Gerland, G. (2000). Finding out about Asperger syndrome, high functioning autism and PDD. London: Jessica Kingsley Publishers. Gillberg, C. (2002). A guide to Asperger syndrome. Cambridge: Cambridge University Press. Harpur, J., Lawlor, M. and Fitzgerald, M. (2004). Succeeding in college with Asperger syndrome. London: Jessica Kingsley Publishers. Jamieson, J. and Jamieson, C. (2004). Managing Asperger syndrome at college and university. Great Britain: David Fulton Publishers. King Saud University. (2009). Disability services centre [online]. Available from: http://www.ksu.edu.sa/sites/KSUArabic/Students/FemaleStds/OleshahCenter/Disability /Pages/default.aspx [accessed 6 January 2012]. Myles, B. and Adreon, D. (2001). Asperger syndrome and adolescence: Practical solutions for school success. Autism Asperger Publishing [online]. Available from: http://www.autism-society.org/site/PageServer?pagename=about_whatis_PDD [accessed 22 November 2010]. Singh, V., Lin, S., Newell, E. and Nelson, C. (2001). Abnormal measles-mumps-rubella antibodies and CNS autoimmunity in children with autism. Journal of Biomedical Science 9, 359. Taylor, A. and Knott, F. (2007). Developing a diagnostic and support service for students with Asperger syndrome at university. Good Autism Practice 8, 1015. Taylor, M.J. (2005). Teaching students with autistic spectrum disorders in HE. Education and Training 47(6/7), 484. P a g e | 10

VanBergeijk, E., Klin, A. and Volkmar, F. (2008). Supporting more able students on the autism spectrum: College and beyond. J Autism Dev Disord 38, 1359-1370.

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