Running a neurodivergent study group

In May 2023, an autistic friend got in some very preventable trouble at uni, due to a mistake they'd made in their work. We were discussing how that affected them, when I realised that there should probably be a representative body for neurodivergent (ND) students like me and my friend. 'Support' felt like a word that got tossed around by neurotypical staff members who had little idea what we actually needed. I wrote some basic notes on my phone of what an ND support group could look like. 

Ask any ND person and they'll tell you that they're used to doing things for themselves – 'help' is another word for 'punishment', especially in education. I started thinking excitedly about what real 'help' could look like. Perhaps we could have an online resource pool, set up a buddy system, and even maybe a neurodivergent study group. The blueprint for the Disabled Students' Network took shape.

Discussing this new idea with other ND students, their excitement was palpable. When is anything for us? It felt punk and new, and people gave me suggestions left and right. So many opened up about their experiences and opinions: I was bowled over by the positive response. Soon after this, I met Sonni, and we became the two committee members representing all disabled students at YSJ. We planned and schemed over the summer, and by September, we were ready to launch the neurodivergent group study sessions, which students could drop into, regardless of diagnosis, anytime from 1pm-8pm on Wednesday afternoons.

Unlocking trust

If, when setting up the group, I had tried to look 'professional' – suit, lanyard, formal tone of voice – the project would have been dead in the water. You cannot claim to be a friend when wearing the clothes of the 'enemy', and the sad truth is there's deep mistrust of teachers/authority figures among the neurodivergent community. Many attendees have described a Mrs Smith or Mr Jones who yelled at them in front of all their peers, or slated them at a school parents' evening, or came up with a cruel and unusual punishment for deemed 'misbehaviour'. 

Seeing the scolded children behind the hard-working students, and hearing their repressed pain at the injustice of 'discipline' and 'punishment' for displaying symptoms of undiscovered conditions, was a win and a loss all in one. It was wonderful to feel trusted with these personal stories, but the fear of letting that continue in education today, and knowing that it continues in classrooms worldwide even now, was a powerful motivator. 

And so I thought hard about how to approach the new students. They'd need to know who was running it, whilst feeling they were among friends. I wore my comfiest clothes, introduced myself just as my first name, and spoke like a friend. Treating them as equals and relating to them was the key which unlocked their trust, and insights into the wider 'neurodivergent experience', which I could never have dreamed of before. 

The right headspace for work

Due to the nature of the group – helping ND students who were stuck with work or just couldn't get started on it – lack of energy and motivation, and burnout, were always going to be major factors. I asked attendees how they were doing, what work they had to get on with, and how ready they felt to work. Sometimes, this wasn't necessary – they'd sit right down and get on with it. Other times they'd come in, tension and stress radiating from them, and they'd need a friendly face who could make things sound in-control, to help ease them into it. 

I kept a notepad nearby. As they vented (which they often felt guilty for), I'd write down what they needed to get on with, and when they were done talking it out, I'd ask them which piece was easiest to do right now (not the most urgent), and ask what steps they'd need to complete it, and write the steps, in order, on the paper. Often they were stuck because they hadn't realised what they were stuck on, and I'd encourage them to contact their lecturer to clarify. They were often reluctant at first, but having a friend's encouragement made it far easier. I'd give them the notes, so they could follow their own steps and remember what they were doing (dysfunctional memory is a bugger when you're trying to get on with assignments).

I realised, towards the end of the academic year, that sometimes, encouraging someone to work when they weren't in the headspace for it was a bad idea. One regular had come in many times, looking exhausted and complaining that they had so many extended deadlines which they still didn't think they would hit. This student had many personal issues occurring in their life, and mental health problems they'd had since childhood. One day, they came in once again looking utterly steamrolled. I came over to help them pick which late piece of work to make progress on, and they talked me through where they were up to with three separate assignments. They felt unable to complete any of them at the time: two because they were confused by the assignment brief and further 'clarification' from the module lead hadn't really made sense. I suggested they contact another staff member, offering to help them draft an email, but they looked so anxious and stressed that I realised that the best possible thing that they could do was to rest, and do something they actually enjoyed, without feeling guilty for it.

It may have seemed counter-intuitive to tell them that, but disabled life entails having less rest-time. Work takes longer, and when it's done, you don't feel good for completing it, you just don't feel like you're in trouble anymore. All sorts of tasks can be harder, due to memory issues and sensory issues and being expected to do just as much as people who have no impairments at all, with less rest than them. My friend's burnout was getting more disabling the longer they tried to work. Deadlines are easily adjusted; mental health issues are not. Recognising types of tiredness, and types of rest, have been incredibly beneficial in terms of helping struggling students. 

Defusing guilt and shame

Guilt seems a key component of burnout. Students wonder why they can't do what they usually can, or why they can't push themselves so much, or feel they're letting everyone down. Identifying this was an important step in spotting overwhelmed students, and getting them ready to work during sessions, using phrases like:

• 'It's clear you're trying your best. Don't push too hard right now, just do what you can.'
• 'Do whatever feels manageable. There's no point getting upset with yourself if something takes longer than expected.'
• 'It doesn't matter that you left this right up to the deadline. It matters that you get it done. You can change the future, not the past. It's not like you meant to do it. Take a break and then we can look at this together.'
• 'Are you being realistic about what you can manage to do today? Take it one thing at a time.'

Defusing guilt and shame was always a core tenet of the group. Phrases such as 'you're just not trying hard enough', 'are you being stupid on purpose?' and 'why can't you just do it properly?' are the weapons these students have been beaten about the head with all their lives, by parents and teachers alike. They have learned to bully and punish themselves, thinking it would fix them. They carry self-brutality, unknowingly, and breaking out of this mindset seems a complex process. To them, self-compassion is a guilty pleasure. How do you help students who feel undeserving of it? 

How do you advertise to a group who don't know they exist?

When neurodivergent students come to university, many have no idea they're neurodivergent. It's through befriending others 'like them' that many of my friends have discovered their conditions. As one friend put it, 'I was diagnosed autistic via peer review'. Accepting their condition can be a deeply personal and complex journey, re-contextualising old memories going back their whole lives. Many may never have had such close friendships, as they've never been 'like' anyone else before. They join an ingroup of outcasts, and they can be 'lonely together', until they're just 'together', and the 'lonely' has ebbed away.

When advertising the group, remembering that many ND students don't know they're ND posed a challenge. How do you advertise to a group who don't know they exist? When designing posters, we avoided using words like 'neurodivergent', 'dyslexic', 'ADHD', 'autistic', etc. Instead they said things like:

• 'do you struggle to meet deadlines?'
• 'do you zone out frequently and have a rich inner life?'
• 'do you burn out easily?'
• 'do you struggle to stay focused on one task?'
• 'do you tend to procrastinate?'
• 'do you get overwhelmed whilst trying to plan and manage tasks?'
• 'do you forget to schedule time to study?'

Even if someone suspects they're neurodivergent, they may have a complicated relationship with the labels associated with their condition(s), and this allows anyone – even if they're just briefly burnt out – to benefit from the group, without feeling they're 'stealing services' from 'real' disabled people. Reassuring someone that yes, they were in the right place, as soon as they walked through the door, and showing it was definitely a place for 'people like them', mattered equally to asking about their workload. They needed to feel comfortable.

Things can get better

The environment in-group was always chilled and friendly. To me, this was a huge win. However, as we amassed more regulars, a general structure started to emerge. For the first 2-3 hours, people worked silently on assignments (usually individually). If someone needed help, they usually took a long time to work up the courage to ask for it. Eventually, as the afternoon became evening, a social discussion would usually start, and we would end up usually talking about:

• New things we'd learned about our own disabilities
• Ableist experiences in previous (and sometimes current) education
• Mental health issues
• Needing/ working out how to access support (either disability in general or specific mental/physical health issues)
• Queer life

Many of the attendees happened to be queer as well as disabled, and while there is evidence that there's a large crossover between these groups, I was worried that maybe we didn't seem appealing or accessible to non-queer students. Although there's a large international student community at YSJ, not one attended the group. This might've been an advertising problem – most advertising was done via Instagram. Whilst this is a popular platform for young domestic students, it's largely unused by international students. However, we put physical posters around campus, so it's hard to know exactly why the engagement is so limited… investigations are ongoing.

Fortunately, the group was the equivalent of seven hours of feedback a week; developing a relationship with the students gave insights into what was lacking in the university and what needed to change for disabled students. Attendees were sometimes shocked that, as co-chairs of the DSN, we could take that information to the university/SU and get something done about it. They worried about getting in trouble for 'whining', unaccustomed to their voices being heard or their opinions valued. Again, their fear of authority prevented them reaching for change. It was painful but refreshing to see them realise that things can get better if you speak up for yourself: times are changing.

Boundary setting

Unfortunately, the discovery of being listened to became a problem, especially towards the end of the academic year. Some regulars had begun to rely on the group as almost a group therapy which, although was somewhat beneficial, was not its intended purpose. Boundary-setting became complicated, as I had become a friend, but also a source of support. Universities worldwide are still just beginning to understand ND needs, and wider support is not yet what it needs to be. I felt I'd become a major source of ND support, which was not what I, nor anyone else, wanted. Being a neurodivergent student myself, I've both delighted in my ability to help others, and truly understand their struggles, but also resented the difficulties of my own neurodivergency. During times when I've been hyperactive when running the study group, or when I didn't realise how long we'd been talking, or when stress was getting the better of me, it was hard not to feel that my ADHD was more a curse than a blessing. At least I was among people who understood.

Luckily, we ran the group inside a small computer room inside the library building, which gave us a little peace and privacy, where we could customise the lights and open/close the windows, and it was the same place every time, making it predictable for people who prefer that. If we had to book a different room (this only happened three times), we would warn people in advance, but attendance definitely dipped.

A first step in a long journey

There have been many hard-learned lessons this year, mainly about boundary setting and how the wider university needs to change. But for now the question is, 'what will next year look like?' Next year is my third and final year, and I will be doing a qualitative dissertation on autistic opinions of authority figures, under the supervision of one of the many wonderful autism researchers here at YSJ. I have ambitious plans for the DSN, including writing myself out of its story and leaving it in safe hands. 

My ambitions remain to increase wider understanding of neurodivergency and increase support for ND students outside the group. Alongside the group, Sonni and I started so many projects in this vein which are my proudest work so far, and I see the DSN's first year as the very first step in the long journey of helping education become fully neurodivergency inclusive. I know I'm not alone.