Between the sensory changes, new routines and demanding workloads, starting university can be especially challenging for autistic students. Despite supports from Disability Services and Student Unions, autism college students sometimes feel they have no option but to drop out. Dr. Eilidh Cage and Jack Howes (National Autistic Society) recently published a paper on this phenomenon. Given AsIAm’s work with the Autism-Friendly University Project, beginning in DCU and being prepared in online form for other colleges across the country, we were very interested in Cage and Howes’ insights and contacted them to discuss them further. Eilidh was quick to note the overlap in these two fields.
Eilidh: I saw a lot of similarities in your eight points of action and the findings of our paper. It would be cool to see the award implemented across the UK as well!
I noticed a great diversity of experiences represented in the paper. The participants seem to vary a lot in terms of their age and when they chose to attend university. How do you think this influenced the study?
Jack: There was an impressive range of universities, ages, and different experiences. It does reflect the wider biases surrounding autism to some degree. It’s very white, for instance. However, we did speak to a lot of autistic women. There is a presumed male to female ratio which is nonsense but it’s still a criteria so it’s good to interrogate that.
Eilidh: It was interesting to look at common experiences despite diverse experiences. There were people who dropped out of Masters. There was even people who’d gone to three different universities and dropped out three different times. Sometimes the case was additional mental health difficulties but even then there was a diversity of mental health experiences within that. That’s another big issue; whether universities are capable of addressing the mental health concerns of autistic people. A common experience was having counselling recommended. However, since they rarely adapt counselling to be autism-specific; meaning the service was much less effective at preventing college drop out.
What did the participants report in terms of mental health difficulties? Were there any specific triggers?
Eilidh: I got the sense that university itself and the stress of being at university was the trigger. Things like feeling like an outsider, being outside of the group and the expectation that university would be the ‘time of your life.’
Jack: There were long term and short term triggers. Sometimes it was the work but in many cases the issue was already there and it was just university the sparks it. In other cases it was living independently. Sometimes it was also December work. In all of them the warning signs were already there. Having to live away from home, cook for yourself and do your shopping. No parents to take you home at a certain time. It can be an enormous change. All of these things combined, without proper autism support at college, can create a real risk of drop out.
We’re currently working on a programme that will specifically help first year students start University in September 2020. How did you find the reactions of universities to your suggestions?
Eilidh: COVID19 has made universities think a lot about how they’re going to change their teaching and how it’s going to be delivered online. Hopefully, universities are also considering how they must ensure online teaching is accessible for autistic people – and there’s lots of potential that it can be accessible. I’m not sure the timing of our paper is good or not because a lot of focus on adaptations now so we’ve got to keep pushing this with department heads and staff to make sure everyone understands the needs of autistic students.
DCU is proud to have a Neurodivergent Society, first of its kind in the world. They’re hoping to create a panel of students who are from other universities and work with them to set up further Neurodivergent societies. Do you think student societies, even those not autism-related can help prevent college student drop out?
Eilidh: It’s interesting, as part of this research we did a broader survey where we spoke to autistic students who HADN’T dropped out. Many of them talked about societies and the sense of belonging, especially societies that weren’t focused on alcohol and parties. With the people we interviewed for the studies who dropped out, they didn’t say a lot about student societies.
Eilidh: There’s research on Double Empathy Problem and how autistic people will find it easier to communicate with other autistic people. It’s also good to have it labelled as Neurodivergent as it isn’t exclusive to autism diagnosis.
How did students feel dropping out? Was there resentment towards the university?
Jack: I was in university and left after one term. I wasn’t really resentful, I was just happy not to be there. A lot of them felt a sense of failure which influenced their sense of self-esteem which wasn’t very high already, frankly. I don’t think autistic people and confidence go hand in hand necessarily. I think many of the people put blame on themselves more than the university. But I think that shows how institutionalized this is; autistic people are conditioned to think they are the problem so won’t confront structural issues which cause this in the first place.
Eilidh: There’s a lot of stigma attached to dropping out. There were people worrying about explaining gaps in their CVs. For a lot of our participants because it had happened a number of years ago, they’d had time to process it. So many of them had actually accepted that dropping out was the best thing to do for them at that point in time.
We noticed in the study that one of the participants took a year out after their A-levels and another went to three different universities. This really flew in the face of the perception that dropping out is because a course is not right for someone or that they need to take time. Did the person who transferred to different universities notice any different in the services or was it a systemic problem?
Eilidh: In that person’s case she dropped out because of her mental health. There is a temptation to say take a year out but if we don’t change the system those same issues will be waiting. There is of course personal nuances but I think universities could be better with mental health supports for autistic students and other students generally. For example, CBT (Cognitive Behavioral Therapy) has been recommended but we need to think about building from the bottom up therapies that are effective for autistic people. Dr. Sarah Cassidy at the University of Nottingham and Professor Jacqui Rodgers at Newcastle are working on this, but the current treatments and services aren’t suitable.
Lack of formal diagnosis seems to have been a consistent issue. How many participants had a diagnosis before university?
Jack: It was a very small number. In England we have this system called clinical commissioning groups. There different regions there are different diagnostic rates. In some it can be nine months and others it can be five years. As well as this some regions have outdated criteria. It’s a longstanding issue that will take a while to sort. I don’t see anyone resolving it any time soon, especially with the current health crisis. So as well as university there are these broader issues that we can’t tackle by ourselves. It’s a ticking time bomb to have so much going on in your life. In many cases the trigger for getting a diagnosis was the experience of university.
Did you find a big difference in universities and their supports. Were different universities more open to thinking differently?
Eilidh: Lack of autism support was a consistent issue behind college drop out. In many cases the universities seemed surprised the participants didn’t know what services to access. Overall the supports that did exist weren’t well sign-posted.
Jack: It was fairly uniform. While it did vary from university to university, across the board it wasn’t very clear where to go and who to speak to.
Eilidh: They found themselves repeating themselves a lot to different services. A lot of people talked about needing one central contact to help advocate.
DCU have an Autism Co-ordinator who is in charge of rolling out the Three Year Plan as part of the Autism Friendly University. As a result more staff have come forward for help adapting their resources. With the findings of your paper in mind, are there any plans for further study on this?
Eilidh: I’m currently working on staff training with colleagues over in the United States. It’s been great to do stuff internationally as the needs are similar across the world. We’re developing online training both about autism but also universal design. There’s also an emphasis on Online Teaching, which will become increasingly common. I think this is something we can take forward after COVID-19. It shouldn’t be just seen as an emergency situation as there’s a lot of potential in it.
Did any participants return to university after gaining a diagnosis?
Eilidh: There were several people who returned. People who dropped out a decade ago have since returned who noted that things have changed for the better. We have also spoken to people who dropped out more recently and they’ve pointed to continuing systemic issues. There’s a diversity of experience from our participants and their attitudes to returning to education reflect this.