As the prevalence of autism spectrum condition (ASC) has increased, so too have the number of autistic students accessing UK higher education (HE).1,2 This reflects the aspirations of many academically able young autistic people who wish to engage and succeed in HE.3 Such aspirations come as no surprise, given the reported benefits of participating in HE.4 Success at university, however, encompasses more than academic ability alone, and there is a growing consensus that a sense of belonging, characterised by supportive peer relations and meaningful staff-student interactions, is key in fostering students’ success and retention.5 Counselling can play an important part for some students with ASC to support them in achieving this success.
A note on terminology
There is no consensus over whether the term ‘disorder’ or ‘condition’ should be used to describe ASC. However, we concur with Baron-Cohen et al,6 who favour the use of the term ‘autism spectrum condition’ rather than ‘autism spectrum disorder’, as it is less stigmatising and it reflects that these individuals not only have disabilities that require a medical diagnosis, but also areas of cognitive strength. The Term ‘ASC’ will therefore be used throughout this article.
In addition to the above, there is much debate within the autism community over which terminology to use to refer to people with ASC, and no agreement has yet been reached.7 The term ‘autistic person’ is rated highly by autistic individuals, but less favourably by professionals, who instead prefer the term ‘person with ASC’.7 Following engagement with the students in this study, it was found that a majority adopted ‘identity-first’ language, such as ‘autistic people’ ‘as an autistic person’, ‘being autistic’. This was perhaps a reflection of the students’ view of ASC as a part of their identity, rather than it being separate from them.7,8 Therefore, in keeping with the students’ descriptions of ASC, identity-first language is adopted, and the term ‘autistic students’ is used throughout this article.
Autistic students in higher education
University life can present challenges for any student, from first-year undergraduates9 to postgraduate research students.5 Challenges may include struggling to adjust and transition to university life, loneliness, financial problems, problems with living independently, and trouble coping with the social and academic demands of university9 – all of which can negatively impact students’ wellbeing and mental health.5 For autistic students, the above-mentioned challenges are likely to be compounded by the core characteristics of ASC. Although there can be strengths associated with ASC,10 it is also characterised by difficulties with social communication and interaction.11 These difficulties can mean that autistic students experience increased challenges relating to the social demands of university life, including establishing and maintaining relations and interactions that are key to fostering their success in university.5,12,13 Such challenges can result in isolation and loneliness.3,14
Additionally, many autistic individuals have difficulties with executive functioning,15 and therefore practicalities such as organisation and time management can present challenges, making the less structured aspects of university life difficult.16 Taking into account these challenges and difficulties, it is no surprise that the wellbeing of autistic students is negatively impacted,17 and furthermore that these students run an increased risk of developing mental health conditions, especially depression and anxiety.18–21 As such, autistic university students can, arguably, be considered a potentially vulnerable student population.
Next in this issue
The research gap
Autistic individuals are known to have high levels of mental health problems compared with the population as a whole.22,23 Autistic university students, more specifically, are vulnerable to developing such problems due to the range of difficulties and challenges they can experience in relation to everyday student life, 17,19 and as such, require timely support and adjustments to ensure their success and retention in HE settings.24 Without appropriate and timely support, autistic students, given the range of challenges they can experience in university settings, may not fulfil their academic potential, and may even drop out of university.24,25 Given the fact that university counselling services are designed to support students whose wellbeing has been compromised, and who are experiencing moderate levels of mental distress or who have complex mental health needs, such services can play a vital role in supporting autistic students. However, little is known about whether the autistic student population perceives university counselling services to be meeting its needs. Furthermore, regardless of the increase in demand upon them, university counselling services are required to demonstrate inclusion, equality and diversity to all students.26,27 However, currently, the perspectives of the autistic student population with regard to its experiences of such elements remain relatively unexplored.28
Our study adopted a qualitative approach to gain an in-depth understanding of autistic students’ experiences of counselling. Ten students, who attended seven universities in the UK, were interviewed and the transcripts analysed for key themes. Approval for the study was granted by the University of Manchester’s Research Ethics Committee and permission was provided by the participants to use anonymised illustrative quotes in publications. It was hoped that such an exploration could facilitate understanding among professionals involved in delivering counselling services in university settings, of how the counselling needs of the autistic student population can be met.
What we found
The findings of the present study have important implications for the professionals involved in delivering counselling services in universities. For instance, there appear to be a number of steps that can be taken by professionals to better ensure that autistic students experience counselling in a maximally inclusive way. These include:
Learning about ASC: to adequately meet the needs of the autistic student population, an in-depth understanding of ASC and its potential impact on students in the context of counselling in UK university settings is required.
Learning from the experiences of autistic students: the students in this study were very happy that people were asking them about their experiences, and for their thoughts and opinions to be sought on all aspects of the service being offered. Below, we present some core themes that came up in the interviews with the students involved in the study. These themes flag up the importance of counsellors being informed about ASC and highlight some of the areas that individuals believed could be developed.
Facilitating access: ‘The first time, finding anything is quite intimidating, because you have to get used to a new place’
Although the characteristics of ASC can manifest in various ways, autistic students’ potential difficulties with communication and social interaction may negatively impact their experience of accessing counselling in a university setting. Challenges with face-to-face communication, for instance, may be addressed by counselling services providing students with online methods to contact the service. This was especially true for Theresa (the names presented here are pseudonyms to protect the identity of those involved), who stated: ‘It’s always great if I can access things online, rather than having to deal with people face to face. So, I liked that I could organise it all that way.’
Some of the students commented on the difficulties they experienced with navigating the university building and finding the counselling venue. Ellie explained: ‘The first time, finding anything is quite intimidating, because you have to get used to a new place.’ These difficulties can be addressed by making relevant information available to the student before they arrive for their first counselling appointment. Such information can be made available in the following ways: enabling the student to access a map on the university counselling service website; providing written directions; having clear signposts; or arranging a convenient meeting point. Theresa highlighted that: ‘…little things like that could make things really inaccessible … if they’re done wrong.’
It appears vital that university counselling services recognise that not all autistic students will be aware of the existence of the university counselling service. This was true for Todd, who was ‘…hanging around the disability services one day’ when he noticed a poster about self-referral for counselling. ‘Had I not seen the poster at that time, I may not even have thought about it’, he said. Some students may also lack sufficient information to consider counselling as a viable option. For instance, Whitney said she ‘…would have liked a lot more information about what [counselling] was going to be like’. To address these aforementioned issues, counselling services can adopt strategies that facilitate students’ access, at the university level. For instance, counselling services may promote awareness and understanding of counselling across the university. In addition to engaging in such promotion early on in (and throughout) the academic year, university counselling services can consider the content they wish to promote. This could include providing information about the reasons why an autistic student might attend counselling while at university, in addition to information about what counselling entails and how to access the service. University counselling services might also consider how and where they will promote their services, for example, via Student Services or the Students’ Union, by displaying a poster in areas of the university that autistic students may regularly access (such as the disability service), or through raising awareness about counselling at specific events, such as the university’s Freshers’ Fair or the university’s wellbeing day.
Awareness-raising among autistic students about the university counselling service may also occur through establishing collaborative working relationships with professionals from other departments within the university. It may be particularly relevant for professionals to liaise with departments – such as the disability service – that have direct contact with autistic students. Furthermore, professionals may liaise with university teaching staff, since they can play a vital role in assisting autistic students to make a referral for counselling. Through such liaison, counsellors can teaching staff, of the issues that autistic students may experience in a university setting and the instances where a referral for counselling might be appropriate. In addition, professionals can educate staff about the characteristics of ASC; in particular, autistic students’ potential difficulties with communication and social interaction, and how these may manifest in student/ staff interactions. This has the potential to enable staff to be better informed about how to effectively engage with autistic students, and consequently provide assistance that ensures that these students access counselling in a timely manner.
Developing a positive therapeutic relationship: ‘Nobody wants to be counselled by a robot’
Working to develop a positive therapeutic relationship with autistic students is vitally important. Ellie acknowledged that for her (and possibly for other autistic students) ‘…building relationships is quite hard’.
‘I think a lot comes down to the rapport with the counsellor – nobody wants to be counselled by a robot’, added Theresa.
Rapport-building might take longer than with other students and could consist of establishing a therapeutic connection based on autistic students’ strengths, interests and abilities. These students might therefore benefit from more sessions of counselling at times.
In addition to the importance of ‘getting to know’ the counsellor, a therapeutic relationship based on understanding of the autistic student as a unique individual can be of utmost importance. Steven reported that feeling ‘judged and misunderstood’ made his experience of counselling less positive, while Todd felt that his counsellor ‘…had that list of typical behaviours, and used diagnostic criteria type behaviours as well, and just assumed that either that’s applicable to everyone, or that is you’.
Some of the students reported sensory challenges that negatively impacted their experience of counselling. For instance, for Steven, a room that was ‘overheated’, had ‘very bright sunlight’, and ‘strong smells of food’, made it ‘…totally inhibiting to be open with [the counsellor]’. Sara explained that she was ‘…not great with loud noises… so the fact that there was only me and the counsellor in a large room, which wasn’t noisy, it was a lot more comfortable for me’. However, such sensory challenges may not manifest for other autistic students. By maintaining understanding and ensuring ongoing recognition that the characteristics of ASC can vary from person to person, professionals can avoid making generalised assumptions and judgments about how ASC may (or may not) be affecting the students they work with. As such, by placing an emphasis on listening to the students’ perspectives regarding ASC, and its potential impact, professionals can ensure that the students’ counselling needs and preferences are better met.
Being flexible ‘…individuals on the spectrum exhibit the same degree of individuality as those not on the spectrum ... perhaps even more so’
Since there is no unified way of counselling autistic university students, a pluralistic approach to counselling can enable professionals to meet the diverse counselling needs and preferences of autistic students embarking on a counselling journey. Professionals should therefore avoid assuming that autistic university students will generally benefit from a particular approach. For instance, in this study, it was identified that only one student who had attended CBT sessions (out of five who noted they had) described it as a helpful approach. Other students described it as not useful, not of help, and as a ‘disaster’. Some of the reasons for this were due to not being able to relate to the ‘way of thinking’ that CBT requires, or finding it ‘extremely difficult’ to change thinking patterns.
Furthermore, some of the students revealed that they were following their counsellor’s ‘predetermined’ ‘structure’ or ‘objectives’, which they did not find helpful. In fact, more than half of the students in this study indicated that they did not want a directive or informative approach to counselling, nor did they want answers provided by the counsellor.
In addition, professionals should also shift away from the view that ASC is a ‘disorder’, characterising ‘symptoms’ that need ‘treating’. Indeed, while autistic students may want to directly address, or reduce the difficulties associated with ASC, this will not be the case for all autistic students. For instance, some autistic students may benefit from the professional’s knowledge and awareness that ASC-related difficulties can arise from a lack of peers’ understanding and/or acceptance of ASC, in addition to a lack of societal reasonable adjustment. This was most certainly the case for Whitney, who described wanting the counsellor to enable her to shift the focus away from the ‘default setting’ that responsibility solely lies with the autistic individual: ‘Maybe helping me to think that it wasn’t … it’s not all on me. The responsibility is not all on me if the situation [establishing and maintaining friendships] doesn’t go as I want it to. I don’t have total responsibility. A friendship is both people in the friendship.’
In order for university counselling services to serve as a valuable resource for autistic students, it is vital that professionals have a thorough understanding of the various ways that the characteristics of ASC can manifest in the context of counselling. Overarching this is the need for professionals to respectfully engage with each individual, autistic student, to adapt traditional practices if and when required, in accordance with the student’s needs and preferences, and to be aware that the extent and type of adaptations that are made will depend very much on the individual student. This is by no means a straightforward process, but it is nevertheless fundamental in ensuring the inclusion of autistic students undergoing counselling in university settings
1. Higher Education Statistics Agency. Students in higher education 2012/13. https://www.hesa.ac.uk/data-and-analysis/ publications/students-2012-13 (accessed 7 December 2020).
2. Higher Education Statistics Agency. Students in higher education 2017/18. https://www.hesa.ac.uk/data-and-analysis/ publications/students-2017-18 (accessed 7 December 2020).
3. White SW, Ollendick TH, Bray BC. College students on the autism spectrum: prevalence and associated problems. Autism 2011; 15(6): 683–701. https://doi.org/10.1177/1362361310393363
4. Department for Business, Innovation and Skills. Benefits of participating in higher education: key findings and reports quadrants (2013). (No BIS/13/1268). https://assets.publishing.service.gov.uk/ government/uploads/system/uploads/attachment_data/ file/254101/bis-13-1268-benefits-of-higher-education-participationthe-quadrants.pdf (accessed 7 December 2020).
5. Atkins M, Ebdon L. National strategy for access and student success in higher education. Department for Business Innovation and Skills. 2014. https://assets.publishing.service.gov.uk/ government/uploads/system/uploads/attachment_data/ file/299689/bis-14-516-national-strategy-for-access-and-student-success.pdf (accessed 7 December 2020).
6. Baron-Cohen S, Scott FJ, Allison C, Williams J, Bolton P, Matthews FE, Brayne C. Prevalence of autism-spectrum conditions: UK school-based population study. British Journal of Psychiatry 2009; 194(06): 500–509. https://doi.org/10.1192/bjp. bp.108.059345
7. Kenny L, Hattersley C, Molins B, Buckley C, Povey C, Pellicano E. Which terms should be used to describe autism? Perspectives from the UK autism community. Autism 2016; 20(4); 442–462. https://doi.org/10.1177/1362361315588200
8. Sinclair J. Why I dislike ‘person first’ language. Autonomy: the Critical Journal of Interdisciplinary Autism Studies 2014; 1(2). http://www.larry-arnold.net/Autonomy/index.php/autonomy/ article/view/22 (accessed 10 December 2020).
9. University Partnership Programme. UPP annual student experience study 2016. https://www.hepi.ac.uk/wp-content/ uploads/2017/07/UPP-Student-Experience-Report-05130716.pdf (accessed 7 December 2020).
10. Metcalfe J, Wilson S, Levecque K. Exploring wellbeing and mental health and associated support services for postgraduate researchers (independent report no RE-IR-2018-01). Vitae 2018. https://re.ukri.org/documents/2018/mental-health-report/ (accessed 7 December 2020).
11. American Psychiatric Association (ed). Diagnostic and statistical manual of mental disorders: DSM-5 (5th edition). Washington, DC: APA; 2013.
12. Adolfsson M, Simmeborn Fleischer A. Applying the ICF to identify requirements for students with Asperger syndrome in higher education. Developmental Neurorehabilitation 2015; 18(3): 190–202. https://doi.org/10.3109/17518423.2013.819947
13. Shattuck PT, Narendorf SC, Cooper B, Sterzing PR, Wagner M, Taylor JL. Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics 2012; 129(6): 1042– 1049. https://doi.org/10.1542/peds.2011-2864
14. Müller E, Schuler A, Yates GB. Social challenges and supports from the perspective of individuals with Asperger syndrome and other autism spectrum disabilities. Autism 2008; 12(2); 173–190. https://doi.org/10.1177/1362361307086664
15. Hill EL. Executive dysfunction in autism. Trends in Cognitive Sciences 2004; 8(1): 26–32. https://doi.org/10.1016/j. tics.2003.11.003
16. Barnhill GP. Supporting students with Asperger syndrome on college campuses: current practices. Focus on Autism and Other Developmental Disabilities 2016; 31(1): 3–15. https://DOI. org/10.1177/1088357614523121
17. van Hees V, Moyson T, Roeyers H. Higher education experiences of students with autism spectrum disorder: challenges, benefits and support needs. Journal of Autism and Developmental Disorders 2015; 45(6): 1673–1688. https://doi.org/10.1007/ s10803-014-2324-2
18. Gobbo K, Shmulsky S. Faculty experience with college students with autism spectrum disorders: a qualitative study of challenges and solutions. Focus on Autism and Other Developmental Disabilities 2014; 29(1): 13–22. https://doi.org/10.1177/108835 7613504989
19. Gurbuz E, Hanley M, Riby DM. University students with autism: the social and academic experiences of university in the UK. Journal of Autism and Developmental Disorders 2018. https://doi.org/10.1007/s10803-018-3741-4
20. Madriaga M. ‘I avoid pubs and the student union like the plague’: students with Asperger syndrome and their negotiation of university spaces. Children’s Geographies 2010; 8(1): 39–50. https://doi.org/10.1080/14733280903500166
21. VanBergeijk E, Klin A, Volkmar F. Supporting more able students on the autism spectrum: college and beyond. Journal of Autism and Developmental Disorders 2008; 38(7): 1359–1370. https://doi.org/10.1007/s10803-007-0524-8
22. Joshi G, Wozniak J, Petty C, Martelon MK, Fried R, Bolfek A, Biederman J. Psychiatric comorbidity and functioning in a clinically referred population of adults with autism spectrum disorders: a comparative study. Journal of Autism and Developmental Disorders 2013; 43(6): 1314–1325. https://doi.org/10.1007/ s10803-012-1679-5
23. Moseley DS, Tonge BJ, Brereton AV, Einfeld SL. Psychiatric comorbidity in adolescents and young adults with autism. Journal of Mental Health Research in Intellectual Disabilities 2011; 4(4): 229–243. https://doi.org/10.1080/19315864.2011.595535
24. Fabri M, Andrews P, Pukki H. A guide to best practice in supporting higher education students on the autism spectrum – for HE lecturers and tutors. Autism&Uni 2016. http://www.autism-uni.org/bestpractice/ (accessed 7 December 2020).
25. National Audit Office. Supporting people with autism through adulthood. London: Stationery Office; 2009. https://www.nao.org. uk/wp-content/uploads/2009/06/0809556.pdf (accessed 7 December 2020).
26. Butlin T, Lawton B, Darougar J, Jones M, Bradley A-M. Sector resource. Sector overview 003 – University and College Counselling Services. British Association for Counselling and Psychotherapy. https://www.bacp.co.uk/bacp-divisions/bacpuc/ resources/ (accessed 7 December 2020).
27. Equality Act 2010. London: The stationery office. https://www.legislation.gov.uk/ukpga/2010/15/contents (accessed 7 December 2020).
28. Toor N, Hanley T,Hebron J. The facilitators, obstacles and needs of individuals with autism spectrum conditions accessing further and higher education: a systematic review. Journal of Psychologists and Counsellors in Schools 2016; 26(02): 166–190. https://doi.org/10.1017/jgc.2016.21