Colleagues and I have been trying to do some research into neurodiversity in higher education teaching, learning and assessment policies and practices. The first barrier we encounter is the way UK higher education categorises disabilty through the Higher Educational Statistics Agency (HESA) labels.
HESA (and therefore UK HEIs) use the following categories:
| 00 | No known disability |
| 51 | A specific learning difficulty such as dyslexia, dyspraxia or AD(H)D |
| 53 | A social/communication impairment such as Asperger’s syndrome/other autistic spectrum disorder |
| 54 | A long standing illness or health condition such as cancer, HIV, diabetes, chronic heart disease, or epilepsy |
| 55 | A mental health condition, such as depression, schizophrenia or anxiety disorder |
| 56 | A physical impairment or mobility issues, such as difficulty using arms or using a wheelchair or crutches |
| 57 | Deaf or a serious hearing impairment |
| 58 | Blind or a serious visual impairment uncorrected by glasses |
| 96 | A disability, impairment or medical condition that is not listed |
| 98 | Information refused |
| 99 | Not available |
Note the absence of the term neurodiversity. Also consider under which of the above categories a range of neurodiverse conditions might be categorised. Some are obvious because they are explicitly mentioned but others such as Complex PTSD or dyscalculia are not. We could assume dyscalculia might be classified into the specific learning difficulty category but complex PTSD could be in that or the social /communication impairment or the not listed category. Therefore, those students who are neurodivergent could be categorised under at least three different categories.
For me and many other neurodivergent people, the neurodiversity banner is a useful one as a means of advocating collectively against a world designed for the neuro-typical person. It seems that, neurodiversity awareness is growing and the label has value in framing conversations around support for students and for staff in higher education. Currently therefore, we have a term that is becoming widely used, has growing awareness, and is useful for the community covered by the term but that has no official statistical recognition in the sector.
The current categorisation then presents a number of issues. Firstly, having neurodiversity categorised under different categories means that accurate, statistical information is not available for those students who consider themselves neurodivergent. At the institutional level the sample size is often too small with the curernt separate categories to be able to take action and measure the impact. I have looked at a number of access and participation plans (APPs) where institutions do have a commitment to different groups of ‘disabled’ students but don’t have enough data to implement plans and have robust measures to ensure their effectiveness. This then leads to the second issue. If you can’t measure progress then nothing is done to address issues facing neurodivergent students or their needs. This is particularly problematic for autistic students because they represent a small subset of overall disabled students yet are the group most disadvantaged at university in terms of retention, outcomes and employment. The small numbers of autistic students means the sector has not really been paying attention to their experiences.
The third issue with the current categorisation of disability is that, as Crutcher (2023) notes, the categories have a medicalised focus rather than a social one which tends to push universities to take a medicalised approach. For example, my own institution requires students with a specific learning disability to provide a full diagnostic assessment from an Educational Psychologist and for those with other disabilities a letter from a GP or specialist written within the past six months outlining the impact of the disability! The emphasis being on diagnosis and on the medical professional telling the university what the student needs. I have sat in many training sessions which emphasise the social model. Most disability services place that model at the centre of their provision and practice but at the institutional level the policies do not.
This requirement for diagnosis and declaration leads to the fourth issue. Many neurodivergent students simply don’t appear in the statistics and do not receive appropriate support. Further diminishing the likelihood that universities will decide to focus on supporting neurodivergent students. The move to inclusive practices is helpful but still seems rather nascent in practice.
The big barrier with the diagnostic, medicalised approach is that adult diagnostic services especially in the UK are thinly stretched with some people reportedly waiting 4 years for an ADHD or autism diagnosis. If you can afford to go privately you can reduce that to a few months. The diagnostic, medicalised approach creates an additional socio-economic barrier to students getting support.
Categories matter! As I have outlined, there is a big disconnect between how data related to neurodiversity is categorised and collected and how neurodivergent students and staff might categorise and think about their own identity. The result is that currently not enough attention is given by universities to supporting neurodivergent students. As Clouder and colleagues put it in 2020, ‘many HEIs as neurodiversity cold spots’ with ‘low levels of staff awareness, ambivalence and inflexible teaching and assessment approaches.’ This is no surprise. It is hard to address something that is difficult to see. I believe that current disability categories represent a real problem to changing policy and practice for supporting neurodivergent students in HE.
Neil's Learning Journey 