Introduction
An increasing number of autistic students are entering higher and further education and completing a degree programme (National Autistic Society,
2016), and therefore the need for universities to address the specific challenges which these students face is more urgent than ever. Recent data show that the number of UK domiciled students who identify as having Autistic Spectrum Disorder (ASD) or Social Communication Disorder is increasing significantly every year, from 6775 in 2014/15 (0.3% of the total student population) to 12,815 in 2018/19 (0.54% of the total student population) (Higher Education Statistics Agency,
2019). Studies have shown that students diagnosed with ASD are likely to face extra challenges in both their academic and social life at university as well as finding it harder to adjust to their new routines and a more independent lifestyle (Anderson et al.,
2017; Gurbuz et al.,
2018). Gurbuz et al. (
2018) compared the social and academic experiences of autistic and non-autistic students enrolled in UK universities and found that autistic students had significantly lower scores in both components (
p < 0.001) and reported higher levels of loneliness and mental health difficulties than neurotypical students. In addition to experiencing higher rates of depression and anxiety than the general student population, autistic students are also far more likely than average to fail to complete their course and this may lead to poorer prospects in adult life (Jackson et al.,
2018).
Most of the literature concerning ASD in educational settings is focused on the experience of school children, and until recently there has been little written about university students despite late adolescence and early adulthood being a developmental period of critical importance. In the last five to ten years however there has been increased interest in the topic (Anderson et al.,
2017; Cai & Richdale,
2016; Cox et al.,
2017; Gelbar et al.,
2015; Gurbuz et al.,
2018; Jackson et al.,
2018; Van Hees et al.,
2015). However, the area of research is still relatively unexplored. The literature includes studies from several countries including the United Kingdom, the United States, Australia, Belgium and the Netherlands and encompasses a variety of concerns including academic performance (Gurbuz et al.,
2018; Jackson et al.,
2018) discrimination and bullying on campus (Gelbar et al.,
2015; DeNigris et al.,
2018), mental health issues (Jackson et al.,
2018; Van Hees et al.,
2015), friendships (Gurbuz et al.,
2018; Jackson et al.,
2018), sensory issues (Van Hees et al.,
2015; Anderson et al.,
2017), level of support provided by the university (Anderson et al.,
2017; Cai & Richdale,
2016; Cox et al.,
2017; Lindsay et al.,
2018) and disclosure of ASD (Cai & Richdale,
2016; Cox et al,
2017; Gelbar et al.,
2015). Similar topics and concerns are raised in most of the studies suggesting that there is little cross-cultural variation in the countries where this topic has been looked at so far.
The problems resulting from the social aspects of ASD also appear to be less well understood and supported by universities than academic ones, with a study carried out by Cai and Richdale (
2016) showing most students they surveyed felt educationally but not socially supported. This is likely to be because many non-academic difficulties indicated by the respondents often require complex and long-term intervention whereas some educational concerns may have more manageable and proven solutions such as additional time in examinations and help from support staff (Anderson et al.,
2017). Gelbar et al. (
2014) state that much of the evidence supports the idea that social and communication issues are underlying many of the problems experienced by autistic students, even problems that do not appear directly related. This has been supported by others, for instance Jackson et al. (
2018) and Anderson et al. (
2017) both found that even though most of the self-reported strengths of autistic students can be helpful to academic work, such as detail orientation and strong memory, even autistic students without a learning difficulty may still struggle academically due to difficulty communicating in the classroom, taking part in group work and following instructions that may be unclear.
One area of social interaction consistently highlighted as important is friendships, with the development of friendships being seen by autistic students as an important marker for a successful and enjoyable university experience (Altman,
2014). Gurbuz et al. (
2018) used an online questionnaire to survey 26 students diagnosed with ASD in the UK and reported that whilst these students reported a similar motivational level for acquiring friendships to neurotypical students, 72% did not find their relationships with others meaningful, and 66% reported having no friends. This shows that concerning friendships there is a significant gap between desired experience and reality for most autistic students. Whilst it must be noted that the study found that a small minority of these students are content to not have any friendships and prefer to be solitary, most found that a lack of friendships detracted from their university experience and led to loneliness and feelings of isolation (Van Hees et al.,
2015).
An aspect of social interaction that is relevant to autistic students is the decision of whether to disclose their condition to peers and members of staff, as others may not be aware unless explicitly told. Studies concerning disability disclosure at university have often focused on disclosure to official support services and the effectiveness of the help they provide (Anderson et al.,
2017; Lindsay et al.,
2018) rather than disclosure in a social context. In studies where disclosure to peers has been mentioned, it is stated that only a minority of autistic university students choose to disclose to fellow students (Gelbar et al.,
2015; Van Hees et al.,
2015), and often took a pragmatic approach, disclosing only when circumstances required it (Cox et al.,
2017). Students who did disclose to peers were normally very discerning in how they chose to tell others due to past negative experiences, fear of discrimination or labelling (Cai & Richdale,
2016).
The decision of whether and when and to whom to disclose is not straightforward for many autistic students. Studies about disability disclosure have indicated that as well as the negative consequences listed previously, disclosure could have benefits such as reduction of stress as people do not have to constantly hide the challenges they are facing (Van Hees et al.,
2015), acceptance from others towards their differences, and it could contribute to the bonding process with friends and increase authenticity in relationships (Blockmans,
2015). Research is therefore needed to explore the tendency of students to disclose their condition to other students (both acquaintances and friends) and to members of staff, the effect that disclosure has had on their relationships, and whether they feel disclosure or non-disclosure has affected their wellbeing.
Overall, the literature reviewed suggests that there are many potential barriers to socialising and friendship at university for students with ASD, for example, not feeling socially supported by the university (Cai & Richdale,
2016; Gubuz et al.,
2018), having no friends (Gubuz et al.,
2018) and loneliness (Van Hees et al.,
2015). It is important therefore to consider the facilitators which may lead to better outcomes. This is an under-explored area compared to the barriers, but studies report benefits from the presence of social support initiatives such as peer mentoring (Thompson et al,
2019), support with the transition from school to university (Lambe et al.,
2019) and greater levels of peer education on ASD (Campbell & Barger,
2014).
Various psychological theories attempt to explain why autistic people may find it harder to make friends and why they may perceive friendship differently to others. The most widely known theory is that autistic people have a deficit in ‘theory of mind’, the ability to recognise another’s mental state as distinct from their own, and they therefore find it more difficult to predict and interpret the behaviour of others (Baron-Cohen,
1988). Another recent theory that is currently being investigated is the social motivation hypothesis (Chevallier et al.,
2012) which argues that autistic people find social stimuli less rewarding than neurotypical people and for this reason engage less in social situations, preventing the typical development of social skills.
Broader psychological theories may also be useful in analysing social behaviour in autistic and neurotypical people. An example of a relevant theory is Social Identity Theory (SIT) (Tajfel,
1979), which refers to how self-concept is derived from perceived membership of a social group and states that members of an ‘in-group’ will often seek to find negative aspects of an ‘out-group’ in order to enhance their own social status and self-image. According to SIT, autistic people would be perceived as being part of an ‘out-group’ by wider society and therefore more likely to experience prejudice and social rejection.
In light of these factors, and the scarcity of research exploring the lived experiences of autistic students in higher education, in particular their disclosure to peers and effects of mental health factors, the present study aims to investigate the social experiences of autistic students at university. Specifically, the study will aim to identify what participants feel are the facilitators and barriers to their friendships, how satisfied they are with their social life, the reasons for and consequences of disclosure/non-disclosure of ASD to others, and finally, the effect of the impact of the mental wellbeing of participants on their university life.
Discussion
This study aimed to explore the social experiences of university students diagnosed with ASD, focusing specifically on satisfaction with social life, the facilitators and barriers to a positive social experience, the reasons for and consequences of disclosure and non-disclosure of ASD to others, and finally, the impact of mental wellbeing on participants’ university life. The research questions asked: what are the experiences of friendship and socialising of autistic university students, and what is the impact of mental health and wellbeing on university life? Overall, the results suggested that although there were several exceptions, most participants had experienced social difficulties at university and that most were not satisfied with their social life, and that this may be associated with lower mental wellbeing.
Most participants stated that they were not satisfied with their social life, a finding which is largely supported by previous studies on autistic university students (Gurbuz et al.,
2018; Jackson et al.,
2018; Van Hees et al.,
2015). The results suggested that whilst having a busy social life may not be a high priority for most autistic students, most do desire friendships and wish to form meaningful connections with others, as found in previous studies (Gurbuz et al.,
2018; Van Hees et al.,
2015). There were however several participants who felt more positively about their social life who reported having a small group of supportive friends with similar interests and personality traits, and it seems likely that finding such a friendship group increases feelings of self-acceptance and self-esteem, supporting previous studies exploring perceptions of self-esteem and friendship in autism (Bauminger et al.,
2004).
Specific barriers and facilitators to a positive social experience at university were identified in the results. One of the major barriers mentioned by participants was the detrimental effect that certain inherent traits of ASD, such as communication and sensory sensitivities, had on their ability to socialise at university and make new friends. This was compounded by the anxiety some participants felt about socialising due to having been bullied or socially excluded during their school years, further reducing confidence in socialising at university. Barriers to socialising which were more specific to the university environment included being unable to attend social events due to a loud or crowded environment, supporting previous studies finding that sensory issues increased the difficulties attending social events (Van Hees et al.,
2015) and encountering a lack of understanding or knowledge from peers concerning ASD.
Facilitators for a more positive social experience at university included having adequate support from the university (including social mentoring), having attended a supportive school, spending time with other autistic or non-neurotypical students, being involved in a society for a specific interest, and having at least one high-quality friendship with a student who is accepting and aware of ASD. Similar protective factors for a positive social life and mental health were identified in a study of autistic adults (Cage et al.,
2018), which suggested that the presence of one of these factors could disrupt the negative feedback cycle of risk factors described above.
Peers’ understanding was perceived to influence participants’ social experiences at university. Whilst several previous studies have briefly mentioned disclosure to peers in a university setting (Cai & Richdale,
2016; Gelbar et al.,
2015; Van Hees et al.,
2015), this is the first time it has been examined in greater detail. The results indicated that most participants were very selective in who they told due to negative past experiences, and/or the stereotypes they believed others held about ASD. In particular, participants who had previously experienced bullying at school were less likely to disclose to their peers at university. There was also a trend towards younger undergraduate students being more reluctant to disclose to peers, whilst the two older postgraduate participants stated that they were now open with almost all their peers about having ASD. Overall, when disclosure to peers did take place it was generally seen as a positive or neutral experience, and beneficial to the mental wellbeing of the participants, as previously reported within school settings (Ochs et al.,
2001).
Many participants felt that other students were likely to base their knowledge on stereotypes that portray autism negatively. Stereotypes cause an overestimation of similarities among people with a particular category (Tajfel,
1963) leading to a generalisation of a group as a whole, particularly when we are unfamiliar with the category (Quattrone & Jones,
1980). Stereotypes of autism therefore may arise due to unfamiliarity and the inability of neurotypical individuals to fit various autistic characteristics into pre-existing schemas. The resulting stereotypes are limiting and destructive (Botha et al.,
2020), leading many autistic people to attempt to conceal their autistic characteristics (Hull et al.,
2017).
Participants frequently referred to the detrimental effect that stereotyping, and fear of being stereotyped, has had on their social lives and mental health, and is the main reason given for non-disclosure of ASD to peers. Several participants mentioned that they had seen content shared by other students on social media or private messaging groups which stereotyped autism in a negative light, highlighting that although active bullying at university may be relatively rare, social exclusion through the perpetuation of stereotypes is likely to be occurring.
Whilst there were a few exceptions, most participants were unsatisfied with their social life and described often facing feelings of loneliness and isolation during their time at university. Several participants linked this directly to a decline in their mental wellbeing, stating that loneliness and isolation had led to the worsening of depression and/or anxiety. However, for a few participants, mental wellbeing remained unchanged, and for some it improved after starting university due to factors such as no longer experiencing bullying, having the ability to seek out those with similar interests for the first time and being able to access counselling and mentoring. Overall, whilst it seems there is likely to be a link between mental wellbeing and quality of social experience at university, it is difficult to ascertain the strength of the link and whether it may indicate primarily correlation or causation.
It is important to note that when assessing mental health outcomes that around 70% of autistic people in the UK have a mental health condition, as opposed to around 25% of the general population (MQ Mental Health Research,
2021) and therefore students with ASD are at a higher risk of poor mental health than neurotypical students. Experiences prior to starting university are also likely to have played a large role in mental health outcomes, for instance almost all participants who reported being previously bullied at school reported a current mental health condition. In addition to this, every participant will have experienced ASD related symptoms, such as communication difficulties and sensory sensitivity, to a different degree, and this will have affected their ability to both socialise and reach their academic goals at university with varying levels.
Psychological Theory
This study has implications for psychological theory. As formerly mentioned, reduced theory of mind—the ability to recognise others’ mental states as distinct from one’s own—has been used to explain the social deficits associated with autism (Baron-Cohen,
1988). This theory helps to explain the findings to some extent, in that participants reported difficulties making conversation and misjudging social cues as barriers to making friends and socialising. Conversely, the social motivation hypothesis (Chevallier et al.,
2012), which argues that autistic people engage less in social situations due to finding social stimuli less rewarding, was not widely supported by these findings, since most participants desired friendships and meaningful connections with supportive others. Neither theory fully accounts for the range of challenges faced by the participants, for example difficult attending social events was also reported to stem from sensory issues caused by noise and overcrowding.
Social Identity Theory can be used to explain some of the participants’ views regarding disclosure and attitude of peers as well as how strongly they identify with and accept their ASD diagnosis. A recent study on the subject of disclosure of disability and LGBTQ identity at university (Miller et al.,
2018) uses SIT to explain some of the reservations that students may have about disclosure, as they would be identifying themselves as part of an ‘outgroup’ which is likely to change the perception of others towards them and possibly lead to increased social rejection. Whilst Miller et al.’s study was not about ASD directly it can be applied to autism in that disclosure could lead to a loss of ‘in-group’ status. This is supported by the results of the present study as most participants, and in particular those who previously experienced bullying or social isolation, indicated that they are very selective about which other students they tell due to concerns over stereotyping and being treated negatively by others.
Conversely, SIT may also be relevant to the decision to join an autism society, as in this context the individual is joining an in-group in which having an ASD diagnosis is a positive factor that enables group membership and increases the social connection of the individual. This has been largely supported by the results of this study, as most participants who joined an autism society reported that it had been a beneficial social experience and increased their feeling of belonging. It is possible that being connected with others on the autistic spectrum may also positively influence the level of self-acceptance, and in turn ultimately benefit their mental health. SIT has been used to explain how many individuals with disabilities increase self-esteem by employing both individual and collective strategies which minimize stigmatized attributes and positively redefine stigmatized traits (Nario-Redmond et al.,
2013). This may explain why in the present study some participants described being motivated to make their autism an important and positive part of their identity, and why this desire may be even stronger if they have previously faced many difficulties in life due to being autistic.
Implications for Universities
These findings have important implications for improving the support universities provide for autistic students. There is clearly a need for further social support as this is a key area of difficulty for those on the autistic spectrum, and as fundamental to wellbeing at university as receiving support for their academic needs. All students who had mentoring sessions found this very beneficial, and several described it as crucial for their survival at university. However, only one university had a scheme whereby other students could volunteer to be a social mentor to autistic students; this could be an effective and direct way to help autistic students make friends and feel less isolated. Additionally, it is important that staff working in mental health services at all universities are knowledgeable about ASD and the particular challenges that autistic students may face.
There were several other ways in which the present study indicated the university experience of autistic students could be improved. To reduce isolation, particularly during Fresher’s week, there should be enough non-alcohol focused events in environments that are not too noisy or crowded and that these events are promoted sufficiently. The presence of an autism society was also beneficial in decreasing isolation. A further factor causing isolation was lack of awareness of ASD amongst other students and perpetuation of stereotypes which left students with ASD feeling isolated. Whilst more research is required to find the best methods of raising awareness, universities should do more to educate neurotypical students and challenge stereotypes, aiming towards a more inclusive climate that embraces diversity. There is evidence that strategies such as training staff, adapting environments and teaching students about the advantages of neurodiversity have been successful in some mainstream schools in raising awareness and understanding of autism (Campbell & Barger,
2014; Frederickson et al.,
2010; Wainscot et al.,
2008), and so universities could improve or add to their existing approach with similar strategies. Peer education efforts should include an explanation about autism, highlight similarities between students with ASD and peers, and make direct suggestions for how to interact with a student with ASD (Campbell & Barger,
2014).
Finally, it was found that the university environment was not ideal for autistic students due to overcrowding (especially in corridors), noise levels and sensory stimuli such as bright lights. There are clearly financial barriers to addressing these issues but in the future accessibility of buildings for those with less ‘visible’ conditions such as ASD should be considered. In the meantime, adaptations should be made where possible (for example light brightness in lecture theatres), and lectures recorded and made available online.
Limitations
There are limitations in the present study to be considered. Firstly, the presence of self-selection bias as there may have been students who might have liked to take part but found the idea of a spoken interview about their personal life too uncomfortable. This could possibly be lessened in future studies by having multiple modes of data collection, for instance online questionnaires, although this may lessen the quality of the data. Secondly, as most participants attended autism societies the study may be more biased towards students who have chosen to disclose their ASD to others and who have a support network in place. This is hard to avoid due to difficulty accessing autistic students who are not in a society but could possibly be reduced by advertising more heavily around campus and social media.
Conclusion
To conclude, the results of this study provide a rich understanding of the subjective experiences of the social life of university students with ASD. Whilst a few participants reported socialising regularly, most were unsatisfied with their social life, several described having no close friends or no friends at all, leading to feelings of isolation and most suffered mental health issues. Risk factors for feeling socially isolated were inter-related and included both factors directly related to ASD, such as social difficulties and being limited in socialising by sensory differences, as well as external factors at the university such as lack of suitable social events and peers who have little understanding of ASD. These risk factors could however sometimes be mediated by protective factors, such as finding friends with similar qualities through joining an autism society or special interest society, receiving social mentoring on a regular basis or disclosing to peers and finding the reaction is positive or neutral. Either through these protective factors, or other self-protective mechanisms, several participants reported becoming increasingly accepting of their ASD diagnosis during their time at university and turning it into a positive part of their identity, experiencing improved mental wellbeing as a result.
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