In this mental health and wellbeing mini-series post, Dr Sue Fletcher-Watson and Dr Natalie Jenkins, from Edinburgh Medical School, discuss how autistic students’ wellbeing is being supported at The University of Edinburgh…
There are 150 students at University of Edinburgh who have disclosed an autism diagnosis, but since autism occurs in 1% of the UK population, the true number should be at least 300. As a result, teaching staff will encounter at least one autistic student each year, and many will also have an autistic colleague.
Autistic people at university experience the same challenges that face nearly all students – a big transition, a move away from home, and all the usual vulnerabilities of young adulthood. However, for autistic students, these are likely to be complicated by well-established factors, including under-diagnosis of autism. This is exacerbated by a tendency for autistic people to ‘mask’ their autistic behaviours in order to fit in – a process that results in exhaustion at best, and burnout at worst. Below, Natalie describes burnout from a perspective of someone with autism:
I compare burnout to a frozen computer. I am trying to process so many things at once that eventually I collapse and freeze. My body feels like it’s falling, and I need to lie in my bed so that I know where I exist. I’ll watch my TV show on repeat; it’s a distraction without having to think because I’ve watched them so many times I know the script! I only feel better when I wake up the next day. If this happens every now and then, it’s manageable, but if there’s something causing it regularly it becomes a real problem. You stop living, the world is on pause, you’re no longer able to experience anything new, you’re unable to engage with even your closest friends.
These factors result in serious disadvantages. Of all sub-groups of disabled graduates, autistic students are the least likely to be in work or further study six months after graduation. Autistic people are 9 times more likely to die by suicide, and a recent survey in Scotland showed that more than 92% of autistic people had two or more mental health problems. In the face of these devastating statistics, how do we protect and support autistic students to thrive?
The answer, we believe, lies in the identification and application of reasonable adjustments for autistic students. This is much easier said than done. Although our Student Disability Service offers autism awareness training, all too often the job of educating staff falls to individual autistic students, and we know anecdotally that many autistic people struggle to identify what adjustments would be helpful. Also, our Student Disability Service reported in 2016 that only 48% of students had all their agreed adjustments implemented. Autistic students need to be empowered to ask for adjustments, and to ensure they are both applied and regularly reviewed. Meanwhile, lecturers, tutors and supervisors need to be given the tools to propose and enact adjustments without feeling they are treading on eggshells, or being taken for a ride.
To aid our student and staff body in this endeavour, we have started to develop a “reasonable adjustments checklist” for students to follow in a meeting with their supervisor or personal tutor. At the same time, an Autistic Staff and Student Network is being launched in time for the 2019/20 academic year. Please contact email@example.com for details. Through the Network, we plan to compile a library of adjustments that have worked for other autistic people, and both the checklist and suggested adjustments will soon be available through HR and the disability service. If in doubt, one simple golden rule if a student or colleague discloses that they are autistic, is to say “OK, thanks for telling me. Would you like to have a chat and tell me more sometime?”
Natalie explains the idea behind the network below:
We first came across the idea for a staff and student network in a blog post by Kana, who set-up an Autistic peer group at UCL. The idea is simple. It is set-up by and for autistic staff and students to provide a sense of support, belonging and mutual understanding at university. We will start with regular weekly meetings, in a casual and friendly environment, where you can come and talk – or not if you prefer.
We’re excited about making The University of Edinburgh a place where autistic people can achieve their goals, feel valued, and be confident. By reading this post, you’re helping us on that path, so thank you!