How effective are universities in supporting the needs of autistic students? My personal perspective

According to Irvine and Macleod (2022), the numbers of autistic students who disclosed their diagnosis to UK universities has “grown 15-fold in the past decade (p49).” However, despite many universities taking steps to consider how the structure, environment and aims of higher education impact upon the needs of autistic students, many still “experience strengths and challenges that can impact upon their full inclusion in higher education (Waisman et al, 2023, p356).”

Being a child of the 1970s, like many autistic individuals of my generation, my autism was not recognised or diagnosed until much later in life, so I was unable to access the support that I needed to achieve my academic potential in school. Consequently, I have come to university as a mature student through distance learning. Therefore, I have not personally experienced the full university experience. However, I will be considering my role as parent to my autistic son, N, now aged 25, when he attended university only a few years ago, and draw from his experience and the growing body of research literature on autism and higher education, and anecdotal evidence that I have digested and analysed in preparing or supporting autistic individuals at university.

Throughout this essay, I will be using identity-first language, because as an autistic individual, I do not see autism as an “appendage” that can be separated from myself as a person (see Sainsbury, 2000, p12), and in line with recent research indicating that this is the preferred terminology for most autistic individuals (Kenny et al., 2015).

As a freelance autistic professional, I have often supported autistic students and their parents in preparing for university. Therefore, the opportunity to research for this assignment has been vital for my continuing professional development. It is hoped that by combining this research with my son’s personal university experience, I can provide the reader with a unique perspective on the issues being discussed.

Through my review of studies in the UK, Spain and the USA, I have encountered much commonality with regard to difficulties faced by autistic students, but I have also been able to identify proactive and positive measures being taken by universities and colleges to adapt the structure and environment and foster a better academic and social experience.

According to Hashim (2022), “the aim of higher education is to nurture higher order thinking, for students to gain mastery in their fields and for university teachers to inspire (p1).”

However, to fulfil these aims, the structure and environment has to be conducive to learning, personal development and positive social experiences. Unfortunately, the structure and environment of higher education institutions can present several challenges and difficulties for autistic students. My son, N, “found the university experience to be overwhelming at times. The fast pace and constant deadlines were highly anxiety-inducing for me, leading to periods of time where I neglected sleeping or eating regularly due to becoming fixated on assignments.” He also “found the social environment to be challenging, as I was constantly surrounded by hundreds, if not thousands, of people.” He also described being “influenced by peer pressure into attending social events that I wasn’t comfortable with.”

These feelings are by no means unique to my son, nor to the UK autistic student experience. Casement et al (2017) explored the experiences of university students in both Spain and England. Their study was deliberately small scale, (nine participants, five Spanish and four UK students) to “gain in-depth personal experiences of individuals” and demonstrated “the largely universal nature of the experiences of students with AS (p77).” The students within this study found navigating social relationships to be the most difficult. Likewise, Knott and Taylor (2014), described the negative effects of social issues on autistic students from the outset of their first term and “staff also vividly described students wanting relationships and friendships, but not knowing how to get them (p 418).”

However, in a study of 23 autistic students across 12 universities across the Midwestern United States, (Bailey et al., 2020) found that some students were more positive about social experiences. Indeed, one commented “There are more people inclined towards nerd-dom than in high school and that has helped (Bailey et al., p1086).” Others like “Thomas,” a participant in Macleod et al., (2017), talked about how the holistic nature of university was “developing him as a person (p687).”

The transition to higher education can be very challenging for some autistic students. Here, support from parents and other family members can be very helpful, ranging from helping to choose the university to assisting with completing registration forms, to finding accommodation and accessing services. The change from structured teacher-led learning to self-directed studying can also present a challenge for many autistic individuals. Even those who are self-motivated when it comes to their learning, can find the lack of clear instruction and direction difficult. However, achieving the grades necessary to reach university can be seen by many autistic students as somewhat of a triumph over adversity in its self, by overcoming several difficulties at school and many arrive at university feeling a great sense of achievement and an opportunity to “get away and start anew (Macleod et al., 2017, p687).”

Research by Knott and Taylor (2014) highlighted the difficulties many autistic individuals can have with time management, meeting deadlines and keeping themselves on task. My son, for example, needed clear guidelines as to how much study he needed per week, and help with assignment planning, otherwise each of his assignments would have been completed over a single weekend! Irvine and MacLeod (2022) describe many autistic individuals having difficulties with unstructured time, uneven workloads and broken routines. In addition, the core deficits (I prefer “differences”) in autism of social communication, social interaction and uneven sensory processing profiles add to their challenges. Miscommunication and unclear expectations, coupled with previous negative experiences often result in anxiety and resistance to change (Hastwell et al., 2017; Bogdashina , 2005; Madriaga 2006).

A confusing maze of multiple university buildings, sometimes over several different sites, often noisy and crowded, further add to this stress and anxiety. By its very nature, the university campus is a minefield of information, sounds and smells that can present a very unfriendly social and sensory environment. Vincent et al., (2017) identify Open Days, Fresher Weeks and noisy teaching rooms as particular stressors to autistic students, and reference research by Bogdashina (2003), and Van Hees et.al .(2014). Bogdashina (2003 and 2016) in particular describes the sensory perceptions of autistic individuals and how many find great difficulty in processing too much sensory information at any one time. It is little wonder then, that institutional rigidity and the difficulties in fully describing what is required by autistic students in terms of self-directed learning and research, that so many struggle to fully grasp what is expected from them.

However, we must avoid looking at autistic students merely through a series of deficits. Autistic individuals have a range of strengths. Indeed, processing differences “give rise to some exceptional skills and talents such as a strong memory, focus precision and an eye for detail, dedication, the ability of putting one’s mind to a subject, analytical skills, remarkable powers of observation etc (Vann Hees et al., 2014, p 1684).”

However, university environments that are “unpredictable, chaotic, illogical, universally noisy and populated with people who communicate unclearly and are unreliable are not conducive to success (Beardon et al., 2009, p40).” Whilst consistency of teaching and learning is essential for success (Martin, 2008), many autistic students feel that university staff often lack understanding of autism, particularly for those students who appear more able or are uncomfortable about sharing their diagnosis or talking about their additional needs (Vincent, 2015). Consequently, some forms of teaching might not be considered “autism-friendly,” and staff may not always appreciate the need or the reasoning behind advance lesson planning, additional written materials, concrete language and structured assignment preparation. This lack of autism understanding can be found in studies by Beardon et al., 2009 and Hastwell et.al , 2012. Even amongst universities where staff have received training in autism, lecturers may still not understand what university life can be like for autistic students (Waisman et al., 2023).

Studies by Knott and Taylor (2014) and Vincent, (2015) have shown some university staff are willing to learn about autism and make provision for autistic students. In EU-funded research with partners in five countries, Fabri et al (2016) found that support services for autistic students in higher education were often lacking. What makes this large-scale research study such a compelling read for me, is that it is co-authored by researchers that are autistic themselves providing “expertise by experience.” Their “Autism&Uni” project supports autistic students in their transition to university, but also offers practical advice and guidance for higher education institutions and autism providers on how best to help autistic students thrive at university.

For many autistic individuals, adapting to change can be extremely stressful. Going to university is not merely an academic challenge, but for many students, it may be their first experience of life away from home, and a major transition into independent living. Anticipatory steps such as meeting tutors and lecturers before starting a university course or being introduced to a mentor or disability advisor prior to registration can be extremely beneficial in helping orientate the autistic student to familiar faces and what might be expected from the university experience.

Fortunately, many universities offer student support through their Disability Team, and an increasing number offer autism or neurodivergent specific assistance. However, the inference is often on the autistic students themselves to ask for help, either during these preparatory phases or when they are already in attendance at university. Unfortunately, some may even decline help until they reach crisis and “damage has often already been done in terms of academic development, mental health and general well-being (Macleod and Green, 2009, p639).”

Despite the academic, structural and environmental pressures of university, many autistic students struggle most from the social experiences of being at university. Numerous personal accounts and notable research studies including Breakey, (2006); Beardon et al., (2009); Macleod and Green, (2009); Knott and Taylor, (2014); Vincent, (2015); and Bailey et al., 2020) have highlighted how social connections impact upon the well-being of autistic students. Those autistic students with smaller social networks often also feel at an academic disadvantage, especially if they need help to catch up after missing lectures or require clarification of important information from their non-autistic peers (Taylor and Knott, 2007). Whilst many autistic students find difficulty in making or maintaining social relationships without significant effort and persistence, most value the importance of friends for positive social support (Bailey et al., 2020, p1088).

Parents can also play a significant role in supporting their children through university, from helping to apply for university places and completing Student Loan applications, through to advocating on their behalf with university staff and the Disability Team. The amount of support required will be dependent upon individual needs, parenting styles and how self-reliant individual autistic students may be. Whilst traditionally autistic individuals have often been over-reliant on parental support and advocacy (Breakey, 2006; Martin, 2006), the rise of autism self- advocacy and more specialist autism support both at university and through independent advocacy, has empowered more autistic students to become more independent. Some students have even described campus life to be “less rushed without the family pressures of home (Irvine and Macleod, 2022 p54; referencing Berry, 2018).” Macleod et al. (2017, p687) describes a student wanting “to go to university to get away and start anew.” However, many autistic students find it difficult to advocate effectively for themselves and may, initially at least, rely on their parents to advocate on their behalf (Fabri et al., 2016).

As a parent I personally found it difficult to let go when my son went to university and kept wondering how he would cope away from home and having to be solely responsible for not only his academic studies but daily living activities such as staying in university accommodation and self-financing through his Student Loan. Incredibly, not once did he have to ask for additional funds from home, despite never having budgeted in his life before! This was perhaps helped by him being far enough away from home (36 miles) to be independent, but also being only an hour’s drive away should he have felt the need to return home at a weekend should he so wish.

One of the biggest barriers to accessing help for autistic individuals is whether they choose to declare their autism. Due to previous negative experiences, some may be reluctant to disclose their diagnosis for fear of rejection or misunderstanding from others. Vincent et al., (2016) argue that “the lack of understanding and sense difference experienced by others, is still a barrier to feeling fully included within the university setting and beyond (p308).” Studies by Knott and Taylor (2014) and Casement et al., (2017) have noted that students are more likely to disclose their autism diagnosis to university staff rather than their fellow students.

An advocate or an autistic peer within the university can be valuable in helping students to formulate the skills required to self- advocate and be more proactive in university life. When at university undertaking his psychology degree, my son was privileged to have an autistic mentor, who not only shared his autism diagnosis, but had also recently completed his own degree in psychology. He was extremely helpful in offering tips to manage workload and plan for essays and, later, dissertation. Peer mentoring and in-house advocacy based within the university such as just described, combined with reasonable adjustments such as recording lectures, having a scribe, or access to Powerpoint slides, together with access to counselling and financial support can help to make the university experience much more conducive to the well-being of the autistic student.

Whilst some autistic students experience severe social anxiety, more struggle with “social discomfort” (Vincent et al., 2016) and feel more uneasy and apprehensive around social situations. Here “masking” may be used as a coping mechanism. However, to quote my son, N, “excessively masking my autism exacerbated some of my mental health difficulties and led to insomnia. Therefore, I ended up reaching out to the university for additional support. My university mentor supported my organisation, monitored my wellbeing, and helped to support me through the pressures of deadlines and difficult social situations. This helped me to complete my work to the expected standard and successfully graduate from university.”

Madriaga (2010) found that “student culture” was a major social difficulty for many autistic individuals and sensory difficulties exacerbated this problem. Bailey et al. (2019), describe this experience as being akin to throwing darts at a dart board to see if any will hit the bullseye (p1086).

For many students, Freshers’ Week can be the perfect introduction to the student culture. This need not be a hostile social and sensory experience for autistic students. Several universities have introduced quiet times during Freshers’ Week to enable autistic students and those with sensory issues to enrol in social groups and activities. In addition, MacLeod (2010) developed the “AS Portal”, an online peer support network for autistic students in higher education.

More autistic individuals are entering university than ever before. However, due to the often “invisible nature” of autism presentations, university staff may not always be aware of all of the barriers to students’ learning (Vincent, 2015). Inclusive practice to support autistic students has traditionally been concentrated around the needs of institutions, staff or parents. Inclusive education for disabled students can be defined as “equitable opportunities for all learners to receive effective educational services, with supplementary aids to support… to prepare them for contributing lives as full members of society (Lipsky and Gartner, 1996, p764).”

The rise of autism self-advocacy and the increasing participation of autistic students in research studies is revolutionising the way that autism is perceived within higher education. Increasingly, more individuals are receiving autism assessments and diagnoses in adulthood. Some students are self-identifying as autistic or having their autism first recognised whilst at university. It has been argued by Accardo et al., (2019) that universities may proactively consider screening for autistic characteristics in light of the knowledge that autistic students experience increased levels of anxiety and depression (p582). I concur with these authors in their recommendation from Van Hees et al. (2014) that moving forward what is needed is a personalised approach to student support involving counselling and peer mentoring as the number one requirement moving forward.

In recent years, there has been a rapid and rising growth in awareness of neurodiversity, particularly autism. This, coupled with a 15-fold increase in prevalence of diagnosed autistic students attending UK universities over the past decade (Irvine and Macleod, 2022), has led many researchers and higher education institutions to consider the structure, environment and aims of higher education and how this impacts upon then needs of this demographic and implications for further provision. Research by Vincent et al, 2016 suggest that there are “significant challenges and barriers within higher education institutions (p312).” However more autistic young people are valuing higher education for their future employment needs (MacLeod, Allan et al., 2017).

Several studies have evidenced the adverse impacts on self-esteem through difficulties autistic students face adapting to the “student culture,” and that classroom teaching is only a small part of university life (from Hastwell et al, 2012).

The increasing awareness and acceptance of autism can be very challenging for higher educational institutions. Autistic students and the increasing number of autistic academics are the “experts by experience” and must be at the forefront of all autism training. I concur with Waisman et al. (2023), that autism training should be a mandatory part of induction training for all university staff (p365). Likewise, I agree with the authors that this must not be at the expense of support services.

Autistic students have so much to offer academia and society as a whole and looking forward, higher education environments “need to be flexible enough to accommodate diversity in all its forms (Macleod et al., 2017.”

References:

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