Statement on the discrimination of neurodivergent students

With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), ratified by almost all members of the European Higher Education Area, the rights and dignity of persons with so-called disabilities fall under special protection. With Article 24 the CRPD states that persons with so-called disabilities theoretically have a guaranteed right to inclusive education at all levels, therefore also targeting higher education institutions. Unfortunately, however, in practice there is a lack of implementation, so that people from the neurodivergent spectrum in particular often suffer disadvantages and discrimination in higher education due to the non-visibility and lack of understanding of their neurodiversity.

The term neurodiversity is an umbrella term that is a social concept on one hand as well as a civil rights movement [1]. As a concept it usually refers to any form of difference in neurological development. Which term is the correct one, “neurodivergent” or “neurodifferent”, has no consensus. Further new terms like “neurominority” have been suggested. The appropriate term remains an issue to stakeholder debates [2]. The statement will use “neurodivergent” and “neurodiversity”. As far as the use of the term is concerned, it is important to further first point out the difference in usage from the perspective of a narrower medical understanding versus the use of the term in the context of a broader civil rights movement that understands neurodiversity more as a social concept. Generally speaking, the term neurodiversity is a term that refers to a social concept which includes any form of difference in the neurological development: the main terminology used to describe people that fall in this could be either “neurodiverse” or “neurodivergent”. However, mental disorders, like depression, anxiety, or dissociative identity disorder (DID) are also frequently being viewed as part of the neurodiversity umbrella. The deciding factor is an individual’s identification with the term neurodiversity. Diagnosis grouped under neurodiversity include attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD) and diagnosis grouped under “learning difficulties” of which examples are dyslexia, dyspraxia, and dyscalculia. It is estimated that dyslexia affects appr. 10 – 20 % of the general population and that dyscalculia affects another 3 – 7% [3]. ADHD is estimated to present in adults with a prevalence ranging from 1.4 – 3.6% [4], while the estimation of ASD in developed countries is between 1 – 1.5% [5]. Further, these diagnoses have significant comorbidity between each other [6].

However, we cannot and should not assume that everyone who is neurodivergent has been formally diagnosed. This can stem from multiple issues, e.g., the scarcity of trained personnel and gender biases deriving from the tendency of diagnostic criteria being fundamentally based on typical male symptomatology, thus hindering the diagnosis of other gender identities and/or risking a late formal diagnosis. An example of this bias can clearly be seen in the gender imbalance in ADHD diagnosed persons, where the disparity between girls and boys [7] ranges between 1:5 to 1:9 [8] and a similar example is also present in ADS diagnosis. There are also biases related to age, race and other factors. This can also lead to a late formal diagnosis. Receiving a late diagnosis during a student’s career can lead to higher levels of anxiety, depression and difficulties participating in HE because of the lack of support such as professional help, medication and therapy during the undiagnosed period. This can have a significant impact on the student’s career, such as using more time to complete studies, not being able to participate to the full extent of their abilities and financial implications [9].

Another barrier to access to higher education for neurodivergent students is the social stigma surrounding getting or having a diagnosis under the neurodiversity umbrella. This impairs students’ ability to ask for help and advocate for a supportive learning environment. Therefore, there is a need for informational campaigns aimed at students and teaching and administrative staff to reduce the barriers neurodivergent students face in higher education. The themes of these campaigns should include, but are not limited to, raising awareness about neurodiversity and its associated challenges, providing information on available support resources, recognizing symptoms of neurodivergent conditions, and offering guidance on how to assist those affected.

Neurodiverse students, especially those in difficult socio and economic status, should be able to enjoy proper social support from their HEI and/or overseeing government institutions. Neurodiverse students, for example, should be given the opportunity to live in a calm and safe environment (accessible student housing) during their student career to minimise their elevated stress and anxiety. Some countries do offer services and support to students that fall under the neurodiversity umbrella; however, students are rarely made aware of these support structures. In Germany accommodations for neurodivergent students fall under the legal framework on disabilities. A study of the German National Association for Student Affairs found that while 11% of students are affected by disabilities, only 4% of those affected students have a perceptible disability. Consequently, aforesaid accommodations tend to be presented solely to those students who openly self-identify as disabled. However, a great deal of students don’t view themselves as disabled, including those who lack a formal diagnosis, and therefore they tend to go unaware of their right to appropriate accommodation [10]. In Ireland a diagnosed disability grants the right “reasonable accommodations” for neurodivergent students. This includes getting a smaller room shared with other students registered with the service for exams, getting extra time or there being separate study spaces in the library. However, as lecturers are not being informed of students’ required accommodations, lectures and assessment design is often not appropriate, like lack of access to lecture slides. Yet again, a major cause in this case is the high number of  students going undiagnosed for the sake of long waiting lists due to overburden of counselling services.

However, higher education in other countries often lacks the legal framework to support neurodivergent students. This often leads to students being at the mercy of lecturers and their perception of neurodivergent students. While some are willing to accommodate for some needs, others view students that need accommodation as “unable to study”. If universities themselves offer diagnostic support, it is again very limited due to a lack of personnel and often imbued with bureaucratic barriers. This is further complicated by a lack of funding for the responsible facilities.

When such accommodating practices exist, they tend to be partial and not tailored to the specific needs of the individual student. A common form of support given during exams is more time to complete the assignment. However, this policy might help some students but it is not catered to the varying needs of students. Often exam rooms and libraries are environments that make it difficult for neurodivergent students to focus. Some universities therefore offer separate rooms to students or literature in an audio format. Though these are steps that can help students, they are still not adequate.

The framework of most study programs is based on an ideal neurotypical student. However, most students do not represent this fictional ideal. Therefore, there is a fundamental need to reevaluate the framework of the study program under the guise of feasibility of the study course and use the notion of student-centred learning also to accommodate the needs of different categories of students, including those of neurodivergent students in their specific needs.

Lastly, it is important to highlight the factors on how neurodivergent students were particularly hit by the Covid-19 Pandemic. With the start of the Covid-19 Pandemic the routines of many have been disrupted, and easy access to healthcare and therapy has been interrupted. However, routines can be an essential part of learning for neurodivergent students. Furthermore, the conditions of the emergency distance learning hardly ever took into account the specific needs of neurodivergent students: this is especially true for neurodivergent students coming from socio-economic disadvantaged backgrounds, with not proper internet connection or housing conditions that would allow them to properly study, in a feedback loop that worsened their disadvantage vis a vis their colleagues.

ESU therefore calls for:

• Access to diagnostic services;
• Access to psychological and vocational counselling services;
• Adapted learning spaces;
• Appropriate study materials;
• Adapted examination-specific rights;
• Specific access rights in HE – tailor-made access mechanisms;
• Possibility of extending the duration of the study program without consequences (fees, administrative obstacles);
• The existence of an administrative service dealing with the situation of neurodivergent students;
• Additional funding schemes for formally diagnosed students;
• Informational campaigns for students and teachers about neurodivergent students;
• HEI level analyses and consultations on the impact of neurodiversity on academic progress and student well-being, along with a strategic plan to address identified challenges;
• Campaigns to establish a legal framework that acknowledges neurodivergent students in their right to inclusive education;
• Acknowledge need for establishing and/or expanding support services, both through measures at higher education institutions and at national level;
• Further education for university staff on needs of students to ensure success in studying; learning from good practices nationally and internationally;
• Lobby towards a broader awareness about neurodivergent students issues.

Footnotes:

1. Edward Griffin and David Pollak, Student Experiences of Neurodiversity in Higher Education: Insights from the BRAINHE Project’, Dyslexia 15, no. 1 (2009): 23–41, https://doi.org/10.1002/dys.383
2. Nancy Doyle, Neurodiversity at work: a biopsychosocial model and the impact on working adults, British Medical Bulletin, Volume 135, Issue 1, September 2020, Pages 108–125, https://doi.org/10.1093/bmb/ldaa021 
3. Stefan Haberstroh and Gerd Schulte-Körner, The Diagnosis and Treatment of Dyscalculia Deutsches Ärzteblatt International 2019; 116: 107-14. DOI: 10.3238/arztebl.2019.0107
4. Stefan Haberstroh and Gerd Schulte-Körner, The Diagnosis and Treatment of Dyscalculia Deutsches Ärzteblatt International 2019; 116: 107-14. DOI: 10.3238/arztebl.2019.0107
5. Lord C, Elsabbagh M, Baird G, Veenstra-Vanderweele J. Autism spectrum disorder. Lancet (London, England). 2018 Aug; 392(10146):508-520. DOI: 10.1016/s0140-6736(18)31129-2. PMID: 30078460; PMCID: PMC7398158
6. See previous literature
7. The results of the study were presented in the binary
8. See J.J.S. Kooji et al.; https://sites.uci.edu/morningsignout/2018/03/17/the-gender-gap-bias-in-adhd-diagnosis/?fbclid=IwAR13jrSxQaU9cEaa4Qo-aAYCBDWBNZN42t1qn2wzmQ420XBBAj-pZv_GRcc
9. https://link.springer.com/article/10.1007/s10803-016-2872-8#Sec12
10. https://www.studierendenwerke.de/themen/studieren-mit-behinderung/studieren-mit-behinderung-gehoere-ich-dazu