Making PhDs Accessible for Autistic Students



Picture1Increasingly more students from a greater variety of backgrounds are embarking on doctoral studies. It is apparent that the system in place currently for these students is not appropriate for their needs, particularly students with disabilities who are at a greater disadvantage. A recent report put together by Dr Farah Mendlesohn collaborated data from a student survey with a number of discussions that took place during a PhD disability accessibility symposium, highlighting a number of areas that needed improving. Aspertypical was fortunate enough to take part in these discussions and presented on the concerns faced by autistic doctoral candidates in particular.

A common misconception is that the autism spectrum is linear; rather than individuals being placed on a line from ‘high functioning’ to ‘low functioning’ we are now beginning to see the spectrum as being more circular; individuals can be very high functioning in some areas whilst very low in others. We therefore see students who are highly capable of conducting doctoral PhD studies but who may be much lower functioning in other areas, and therefore require more support. It is important to address these difficulties as we find more and more students with autism and mental health difficulties entering university but an increased number dropping out. The need for university counselling services has also dramatically increased, at Anglia Ruskin University, where this initiative is taking place, there has been a 126% increase in the number of Counselling and Wellbeing service users in the last five years.

Some of the unique challenges faced by autistic students in general include problems with executive functioning, this includes problems with attention control, inhibitory control, problems with working memory, and cognitive flexibility, as well as problems with reasoning, problem solving and planning. These are all abilities that appear to be vital in conducting one’s own research! Other difficulties include the ability to communicate and work with others, coping with the physical learning environment, and an increased vulnerability to stress and mental health difficulties. Of course these students also come with some terrific strengths, which in many ways make them idea students, if only their studies were more accessible to them. Students with autism tend to be incredibly well focussed most of the time, hard working, rule following and dedicated.

Looking closer at the PhD experience in particular for autistic doctoral students, there are several common concerns. Below are a number of ‘fictional’ scenarios of struggling PhD students:

James sees his supervisor once every couple of months, usually by Skype but occasionally face-to-face. His supervisor complains that every time he sees James he has not done the work they set out previously. James has become hyper-focussed on one very specific aspect of his research, and cannot focus on anything else. Each time his supervisor brings up a new area he should be focussing on, and suggests a number of different things he could look at and do. Sometimes his 2nd supervisor will join them with new ideas as well. The meetings typically last an hour and James does not appear to be engaged in them or interested in what is being said. James’ research is not progressing at the speed it should be and he has fallen behind.”

“Lucy is yet to attend her compulsory presentation training, which should have been done 6 months ago. She cannot progress to the next stage of her PhD without doing this. However, when she last went to a compulsory training session she left half-way through. They were made to introduce themselves to the class, work in groups with people she hadn’t met before, and who she also had to have a ‘networking lunch’ with in the afternoon, which she was dreading. Most of what was said she had been unable to process or fully understand, however she felt unable to ask the lecturer to clarify or repeat what had been said. The room had been packed and stuffy and the classroom lights were also very bright. Lucy is now anxious about attending anymore.”

“Sam is excelling academically in his research, he loves his topic and can think and talk of little else. Lately, however, he has become unable to care for himself. He turns up for meetings late, inappropriately dressed, and often unclean. He has been unable to sleep and is not motivated to cook for himself so regularly skips meals. Last week the library couldn’t source the journal article he required and he broke down and started shouting very loudly, upsetting other students and staff. A week previously his supervisor cancelled their meeting and he was unable to get out of bed the whole day. He has a history of depression, which he did not receive help for at his previous university because he always handed his work in on time and got top grades.”

“Freya has been unable to do any of her PhD work for several months now. Right before this she was told that her research proposal had been rejected and she would have to rethink the studies she wanted to conduct. In addition to this one of her supervisors informed her he was leaving the university and unable to supervise her any longer. Another of her supervisors has told her it won’t take long at all to change her proposal, and has given her several ideas of how to this. Freya, however, feels unable to move past her original proposal and does not know how to restart it or change her plans.”

“Chris lives at home with his parents. He very rarely goes into university and when he has to go to meetings he suffers from severe anxiety. He is unable to concentrate on his work at home and does not have the correct equipment, however, he has nowhere else he feels comfortable that he can study. He has been told there are desks available in his faculty research office, but as of yet he has felt unable to go in there. Because he can’t get onto campus he has been unable to access any of the support available to him either.”

“Sophie failed her Confirmation of Candidate. Her written proposal was good but when she presented her work she was unable to adequately answer the assessors questions. She had not met either of them previously and her supervisor had been unable to attend the assessment. One of the assessors questioned if it was in fact Sophie’s work, the other said she didn’t think Sophie had a good enough understanding of the methods she had used. This had been quite the opposite of the truth, in fact Sophie had studied in great detail the methods she had used and had devised her research completely by herself, her supervisor often praised her for being so independent and self-motivated.”

“Danny receives Disabled Students Allowance and is entitled to a non-medical mentor and a mental health advisor to help him whilst he studies. Danny has mental health difficulties as well as dyslexia. The mentor is for things such as note-taking and support during lectures and seminars, which as a PhD student is not appropriate for Danny. Danny has also stopped seeing his mental health advisor because she did not appear to understand his way of thinking and he felt unable to communicate with her. He is now struggling to cope with his workload and his mental health is deteriorating.”

There are a number of difficulties summarised in these examples as well as suggestions for improved accessibility:

  1. Work load and organising and conducting own research
  • Seeing the bigger picture can be tricky
  • Organising lots of information from different sources
  • Multi-tasking
  • Organising time
  • Not becoming fixated on irrelevant projects/information
  • Adapting to problems and changes in the research plan
  • Having a safe and comfortable work environment on campus
  • Presenting research
  1. Training
  • Meeting new people and ‘networking’
  • Interpreting taught verbal information and instruction
  • Working with others
  • Unpredictability of the training schedule (especially elements involving group work and networking lunches!)
  • Being able to focus on material that is not of interest
  • Holding focus for whole sessions
  1. Supervision
  • Ability to communicate needs to a supervisor
  • Supervisor being aware of the student’s different needs
  • Method and frequency of meetings
  • Following advice/instruction/plans
  • Abstract communication
  • Inconsistency
  1. Mentoring and emotional support
  • Handling small amounts of stress or change
  • Excelling academically but struggling emotionally
  • Co-morbid mental health difficulties/learning difficulties
  • Communicating distress and need for help
  • Accessing university counselling/wellbeing and study support
  1.  Examination
  • Method of Viva and Confirmation of Candidate
  • Communicating research
  • Understanding and processing of questions
  • Ticking necessary boxes

 Looking at this final area of difficulty, the examination, a paper by Chown, Bearden, Martin, and Ellis (2015) illustrates some simple ways of recovering barriers to the final Viva examination for autistic students. Their main concern was that currently the Viva examines social prowess, and the ability to verbally communicate ones research on the spot. For students in general the Viva is an unpredictable and stressful examination, which varies greatly across institutions. They suggest a number of ways to overcome this for autistic students, including virtual Vivas, having an independent chair or advocate, an early needs assessment, understanding examiners who are able to repeat and rephrase questions, a better planned schedule, and advanced notice of the exact location.

To conclude, there are a number of hurdles faced by autistic PhD students, which can easily be overcome by simple adaptations and awareness within the research team of specific needs. Whilst no two students with autism will be alike, it is important to recognise common pit falls.

 

For access to Farah Mendlesohn’s report on the general accessibility for disabled PhD students click here.

 

Reference

Chown, N., Beardon, L., Martin, N., and Ellis, S. (2015). Examining intellectual ability, not social prowess: removing barriers from the doctoral viva for autistic candidates, Autism Policy & Practice, 2, 1-14

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2 Comments
  1. Hi. I found this topic incredibly fascinating. I left my PhD 14 years ago, only months til completion. Now I know why. I’ve spent those 14 yrs feeling like a loser. The whole education system is not for autistics, but uni is the biggest challenge of all. If I can ever help with your research, please feel free to contact me via email. More needs to be done to stop the world losing brilliant minds.

  2. I left my Ph.D. last year (twice!). Once because I had a feeling only to come back (I was so close!) and then realize it was never going to happen because of those unstated expectations and hidden rules they don’t teach you. Only in leaving was I able to understand that my problem was that I was Autistic (surprise…you’re 40 and Autistic!) and that’s why I can collect Master’s degrees by the bucketload (and a JD, too) but the social expectations of a Ph.D. and its illusory choices (which are not real choices) floored me. Thanks for writing about this. Hopefully we can do better in the future, but (not to be cynical) the curse of the spectrum is we all mess up differently and so many of us (women in particular) don’t learn we’re Autistic until late in life. I foresee a few more generations before we get it together in upper academia, but hope we can help undergrads to do better. For me, the key was simple: when I was at a Catholic college, I thrived (particularly a Catholic women’s college), but I found the landscape at public universities (with the parking, noise, havoc, etc.) on top of the “treat you all like numbers” (even the tiny Ph.D. group) to be my downfall. This suggests to me this is a bigger problem that extends to other groups as well, and we might tackle this faster if we worked with other excluded groups. Then again, academia wants to keep itself ivory, deep down, doesn’t it? We have a lot to do. So good to have more people talking about it.

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