Category: neurodivergence

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Image of an hourglass half buried in the ground

In recent years, the British government has been pushing Universities to implement workload allocation models tracking staff time. This is at least notionally, about providing transparency and accountability around public spending around higher education. I fear, however, that it is more about promulgating a disengenuous model of “lazy academics” sitting around using government money and the need to control us more carefully. The origins and impact of this narrative as well as some helpful refutation from actual realiity are covered extensively in Peter Fleming’s Dark Academia (blog post book review from LSE linked here). But that is the reality that we’re under. And, truth be told, many academics have embraced these systems with open arms in hopes that they will proivide a utilitiarian tool for reducing their overwork and inequalities within the sector around workload. My observation so far is that they have increased and worsened these problems and privatised suffering by concealing it behind impersonal systems which can’t be confronted or held accountable. I’ll accept that there are likely exceptions to this and would be glad to hear if anyone has experienced systemic improvements in justice within their academic workplace as a result.

But this has led to a shift in the model by which academic workload is measured – from forms of work to time units. It used to be the case that we’d talk about sitting on a certain number of committees, teaching a certain number of modules, etc. but now all of these are converted into specific homogenised time units (“WAM Points”). I’ve worked in other sectors where workload is managed in this way so it’s nothing new to me, but I had thought for a moment that I’d escaped it, so have found this resurgence personally discouraging.

I’ve been thinking about this lately, in particular as I work in increasingly overt collaborations with other neurodivergent colleagues, and I’ve observed that this shift in workload management, surveillance and sanction has hit ND staff particularly hard. Given my research over the past decade has focussed on the philosophy and theology of time, I’ve hit upon some speculative conclusions I’d like to test out about time experience and this policy shift. In particular, I wonder whether neurodivergent people experience time in more variable and intense ways than non-ND.

Post-Taylorist scholars in business and organisational studies have begun to observe that time is not homogenous. And in really obvious ways our embodied experience of normal tasks is certainly not this way. Think of how you can sit a read a novel and the hours pass unnoticed, where in contrast you might find when completing an onerous task that the time passes with aching slowness. This is also the case with joyous work, however, as the bodily impacts of exercise are quite different from relaxation. Our hour of deeply pleasurable sprinting is still accounted differently in our bodies from an hour of walking. So too it must be at work: different kinds of activities have different levels of physiological demand on us. In some (limited) cases, workplace studies scholars (and even managers!) have built “recovery time” into specific kinds of tasks on the basis of this awareness. But it’s not just the tasks themselves, but also the “between times” and in other cases, scholars of work have noticed that “idle time” is a common and necessary feature of work providing padding around difficult tasks and opportunities for creative and non-linear thinking around problems. So too workplaces, especially in tech have emphasised unstructured time as part of a normal working week. It’s important to emphasise that for academics, at least in my experience, the block allocation we get for research time is NOT this kind of thing, as we spend most of the year being pressed for demands around production and that time is probably the most pressured of any I experience. Have a look at the ways that sabbaticals are handled now – we’re expected to write an extensive application detailing all the specific tasks we will complete and achievements we will attain, and are pressed relentlessly to report on this when that time has concluded to confirm that we have completed the list we have offered.

All of this things are true for any person who occupies a human body. But I think these things are far more intense for autistic people where flow and pace are far more intrinsic to executive function, working at tasks in a kind of self-generated sequence can be essential. I mention this a bit in a previous blog post where I talk about a “day in the life“. The tragic thing about this is that when they aren’t subject to trauma, coercion or control, when engaging their passions (like pretty much every academic I’ve ever met) autistic people will pursue tasks with unusual tenacity. So trying to account for our work in a mechanistic way is oppressive, but also unnecessary as we’re likely putting in long and strange hours to complete our work above and beyond, simply for “love of the game”.

This has some really concrete ramifications for workload management, however, as it foregrounds the ways that individual tasks can have quite different demands on people, especially in the case of neurodivergence. And these models deliberately disallow inflecting time burdens in different ways for different people. The expectation is usually that some things will be hard and others will be easier, but this really mobilises the ablist “superpower” narrative in unhelpful ways, e.g. if you are slowed down in one area, you must have a superpower to compensate for another area so you can “keep up”.

In a similar way, having recovery and buffer time is even more necessary, as we adapt to group work patterns which are unadapted and hostile. It was once the case that I could mask and conceal my own disabilities by offloading tasks that took me far longer, or were demanded in moments when I didn’t have energy or ability to complete them, into spare time. But increasingly our models exclude spare time as a general rule, require work on short notice and rapid deadlines, and I’ve found that there’s simply no place to put those things temporally.

The key point here is that if we can talk about and negotiate our shared workload together around tasks and abilities, things are quite different. But when we work with impersonal homogenised time, the guaranteed result will be oppressive for specific (perhaps all) people.

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In recent years, one of the joys of my work at the University has been to convene a regular tutorial / support group for neurodivergent students. As part of the process of unmasking and reflection, I’ve come to confront so much about my own past learning in University which was a (lonely and terrifying) struggle, from sensory overload, challenges processing and hearing lectures, processing information in different ways, and navigating frequent meltdowns and overload. Chatting with students (who have far more self-awareness at this stage in their University journey, but are still trying to navigate these challenges!) has been really meaningful. Our discussions have also been quite interesting from a research perspective, as we delve into points of pedagogical friction and dysfunction which are a regular part of their experience and to try and troubleshoot how we might adjust, confront, or repair those areas of exclusion where our curriculum doesn’t always map onto the diversity of our learners. We have found some things which are (or might be if we could find suitable allies around educational policy, which is sometimes a quest unto itself) easily fixed with small hacks, in other cases, it’s really just a matter of being able to speak aloud about challenges even when there’s nothing to be done. But then there are some issues where we identify a challenge which is much harder to pin down. It’s often the sort of thing where you might be tempted to dismiss it out of hand, but when 7 or 8 people all seem to have the same experiences, that cooroboration helps to identify something that requires further investigation.

I’ve been chasing one of these for a couple years now which runs something like this: some of our students experience really “spiky” performance in marks they receive for assessments. When I say spiky, I mean in the same semester they might get one of the highest marks we’ve ever awarded for a particular class, and at the same time they might be just above a failing mark in another. In some cases this happens because, when you’re navigating a learning environment which is constantly stressful and traumatic, energy levels can suddenly drop and executive function can evaporate. But even if we bracket out instances where this has been the case, there are other situations where learners submit a raft of essays, all composed with the same level of energy and deposited with the same level of confidence and the results are highly idiosyncratic and unexpected. This was very much the case for me as a learner: I managed to push my way through (obviously) higher education, but it was always by the skin of my teeth, fretting about that one module or essay that I’d nearly failed whilst getting superlative results in others. Let me emphasise, the phenomenon that I’m highlighting here isn’t a matter of ability suddenly flagging, or finding an area where I was lacking understanding or expertise. Sometimes I’d hand in an essay where I felt like I was saying something really important and meaningful, and the marker would return it with feedback indicating that they clearly didn’t understand what I was trying to do. This was (and is) usually framed as a failure to achieve proficiency in written communication. Because it’s always our fault when someone can’t understand us, right?

Since then I’ve learned about the double-empathy problem, originally developed by Damien Milton (original paper here). Researchers into autusim have consistently pursued this hypothetical frame – that breakdown in communication and understanding must lie within some pathology of the autistic person. This has been framed around “theory of mind” – the condescending, theoretically and empirically problematic suggestion that autistic people lack the ability to empathise or understand the mental states of other people, also sometimes called “mind blindness”. This much more comprehensive pathologisation of autistic lives can be confused with alexithymia (something I experience, as I relate here: A day in the life of neurodivergence) which is a much more specific condition, and which has been tied to both hyposensitivity (getting too little information from reading other people) and hypersensitivity (getting an overwhelming flood of information about the states of other people from microexpressions and body cues, which can be hard to parse when you’re under stress). It’s also the case that there is a very high co-incidence of trauma, at the levels of CPTSD for autistic people, which has effects (which can be addressed therapeautically) in impairing our ability to read other people (e.g. through the constant triggering of our threat perception and response). (some) Researchers have begun to be much more cautious about engaging with older theories around theory of mind, especially after they have begun to take into account trauma-informed approaches to experimental psychology. Getting back to Milton’s work, in setting aside the tendency to pathologise autistic people, Damien hypothesised that this lack of understanding, when it occurs, might happen to a much wider range of people. That breakdown in communication might arise from forms of cognitive difference, and seen in this way, might occur in BOTH directions. Milton wondered if it might be possible that autistic people might experience less communication breakdown when communicating with other autists and conversely if it might be possible to set up experiments which verified this was occurring. This research is just starting to coalesce as a field of study, but my reading of the literature (for an example, see Muskett et al 2009) is that this hypothesis has been confirmed and this requires substantial revision to psychological theories of autism.

The reason I bring up double-empathy is to ask, whether in the course of teaching and learning, we may have two-way breakdowns in communication, where written communication is the goal of the learning process. Is it possible that faculty (both autistic and allistic) are conveying prompts inviting students to write an essay which can be misunderstood when bridging neurological difference? And similarly, is it possible that students are writing essays which might be received quite differently, and even marked quite differently, when read by staff who are autistic or allistic? To be clear, as I’ve related elsewhere in blogposts, I think that the much heavier burden here is on allistic staff as autistic staff will have had a lifetime of training (sometimes on the level of conversion therapy) in interpreting and understanding communication across neurological difference. The especial challenge here is whether the opposite is true. I fear that in some cases it is not.

For now the advice that I give to students arises from my own experience: your learning process around written communication, especially where it will be largely evaluated by standards which exclude the salience of neurodivergence, will be spiky. You will be misunderstood, and there are few pathways to open up converastion with lecturers about this experience in practice unless you are willing to pathologise yourself (e.g. “I was under great stress and my writing suffered”). There are no mechanisms for faculty to assess their relative incompetence in understanding different forms of communication. And I see policy directions in higher education which are driven towards increasingly homogenous and binary assessments of written communication (good English v. bad English) which has implications for a wide variety of student and not just neurodivergent ones. I tell students that their learning journey is going to have a longer arc than they expect. I found that my own writing didn’t “click” with audiences consistently until I had time to synthesise the many many horizons I was trying to integrate (and this sense that one needs to integrate everything is a common experience for autistic learners). It wasn’t possible for me to compartmentalise in the ways that many other writers and learners do, which ensures a level of success in their early stages of education. It’s likely that I’ve also found an audience which has been developed over time, with readers who understand my broader project, have sympathy for and interest in it, and are able to “jump in” and understand what I’m trying to achieve.

The question I’m holding for right now is whether there are ways we can adjust our processes of teaching to adapt to a wider range of written communication styles, and celebrate the fact that learning journeys are often quite different. It’s possible that we cannot achieve this kind of adaptation without some radical reconfigurations. I’ve tried much of the fine-tuning approaches already in my own practice and with collegaues, and have not found much in the way of effects. I think that calls to abolish grades are probably a key part of the discussion we need to have around how we can more effectively configure the coaching relationship with student writers. The core issue here relates to neurodiversity on campuses – aside from box ticking and PR exercises, how far are we willing to go to craft pedagogy which embraces diversity and doesn’t punish it?

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Talk for UOB College of Arts & Law Mental Health Champions Network
14 November 2023

Background: Welcome! If you’ve come here for the first time, I’m very happy to have you. In case what you’ve read here or heard me share in a talk arouses your curiousity and you’d like to have a chat, I’ll just make a few brief requests of you here. As you’ll see, I’ve included quite a lot of links below amidst the text which I’ve vetted ahead of time. I’d be very grateful if you were able to take time to do a bit of reading and self-education before coming to me with questions. A good baseline might be to try and read at least two things I’ve referenced below before emailing or setting up a meeting and then we’ll even have something specific to open up a chat. Take note – I’ve also put up a variety of posts on this blog which reflect my stream-of-consciousness as I go about the work of academia in a variety of contexts over the past couple years. This is deliberate so that folks have a safe place for some learning-oriented voyeurism. I’ll emphasise that this is all exclusively my context and that it will not be even remotely similar to many other neurodivergent people, so take it all with a bit of a grain of salt. For one-to-one, I’d like to reserve my energy particularly for other ND folx and unpacking these details with friends whom I haven’t had a long disclosing conversation with yet. So if you’re an ally and we haven’t spent a lot of time together before, I’m delighted you’re here! But please do maybe start with reading and learning indirectly rather than going straight to the source. 🙂 I am very happy to offer training, reverse mentorship and one-to-one conversations, but I do need to balance my energy so I can’t respond to everything, so I may divert you to another colleague (we have a “speakers bureau” within the Staff ND group).

Thanks so much to everyone for coming today, and to the network for the invitation to share today. I’m mindful that there are many friends here from whom I’ve learned so much, and with whom I’ve collaborated on student support, research projects, and had arguments about University policy. I’m think it’s probably the same for my co-presenter. I’ve never spoken publicly about my autism and this is for a variety of reasons, some of which I’ll get into below and others which my co-presenter is going to share a bit about. But just to open for the record: I’m a late dx autistic adult who doesn’t tick the stereotypical “on the spectrum” boxes, and it has taken me years to come to terms with this part of my identity, develop a disability identity, and today marks a bit of a “coming out” which, if I’m being honest, feels more than a little terrifying. We have a non-official staff neurodiversity network that I’m a part of. Though there are many ND folks here, it is totally expected that, like me, most of you wouldn’t have chosen to disclose that as a disability or even to pursue diagnosis which can be hard to access and traumatic. But the ND staff network is a fantastic safe space, and if you’re looking for one, we’d very much welcome you with open arms!

So, with that preamble out of the way, I thought it might be helpful to share with you a “day in the life of Jeremy” with some behind-the-scenes access that you wouldn’t ordinarily have. I’ve been trained from birth in masking – the work of concealing my unique traits at all costs, so you probably wouldn’t notice any of this without some insider knowledge. You might relate to some parts of this story, but maybe not some others. I’d say that diversity is all around us, and we often conceal our own differences. But I’d probably want to resist the suggestion that people sometimes make when they feel solidarity that “we’re all a bit autistic.” As you’ll see, there are some pretty unique and sharp edges to my experience and while I love solidarity from allies, I think it’s important to grapple with your own divergence in careful ways that don’t appropriate the struggles that my co-presenter and I have had in our day to day.

I attended a training a few months ago. It was on a topic that I’m quite passionate about and interested in, so I was excited to do some learning alongside interesting and interested colleagues. This workshop was also a bit unique in that I’d only recently decided to start “coming out” or “unmasking,” that is, sharing about my autism with specific people in contexts where it seemed safe and inconsequential to do so (for more on this see Devon Price, 2022 below). For this event, I ticked the box on the registration form regarding accessibility needs and wrote out my request to the facilitator to send me information about the plan for the day ahead of the session. Autistic brains tend to work on the basis of focal attention and inertia, so some types of workshop structure can feel really hostile if someone is jumping around topics really quickly and not taking time to do deep dives. The flip side of this is that once I’ve started working on a particular project, I can sustain unusual levels of focus and concentration. When daily activities and thought experiments can’t be consolidated, I’ll need to prepare myself in advance so my discomfort doesn’t derail the activity and I can find some useful outlet for the torrent of thoughts that will result. Starting a bunch of small unrelated or non-premeditated tasks in succession can take a lot of extra emotional and mental work for me, to an extent that (as I’ve been learning) being forced to do this can make me unwell. So I’ve learned to take steps to mitigate that impact where I can. If I can get a “preview” of coming attractions for a session I can make some plans around parts that I might sit out on, or doing some advance preparation so that I can prepare mentally quickly if we’re switching around a lot. I also wrote on the form that I’d be arriving early to check out the accessibility of the room. My autistic body-mind is pretty sensitive to sensory inputs, so smells, sounds, lighting, and room configuration can make the difference between a super “cozy” session or meeting where I feel comfortable and engaged, able to bring myself fully, and a session where I’m having to navigate levels of stress bordering on panic and only able to bring little fragments of myself. The facilitator never responded to my request, which I later realised was the result of a clerical error that wasn’t their fault and they’d never seen my request. But I wasn’t worried as I knew from experience that processes of accommodation are often an afterthought, designed by people who don’t understand what they’re accommodating, and can break down as no one is monitoring their usefulness or the impacts of their implementation. I had planned to arrive early and figured I could have a quick private conversation ahead of the start time.

Because this is Britain, trains were late and cancelled, so I arrived a half hour late. This meant walking into a room full of people who stared at me, not in an unfriendly way, but actually many friends who offered smiles of welcome, as I struggled to find a seat. It was an uncomfortably hot summer day, so the organisers had set up two large fans at the front which were blowing loudly. Given that I’m really not able to filter out white noise, this was not ideal. Actually, to be honest, fans are one of my worst sounds. The lighting in the room was also harsh, so I also felt blasted by visual and auditory noise. I can also struggle to process auditory information (this is called CAPD), especially when I’m under stress, so I’ve begun to experiment with headphones and live closed capitioning in meetings. But this is not easy to do discretely, and this felt like an experience best begun “off the radar”.

The seating was configured in a semi-circle so that we were all facing each other and uncomfortably close. As a larger adult I barely had enough elbow room to avoid bumping into the person next to me, so as I sat I was uncomfortably aware of my own presence and the proximity of others. For reasons that neuropsychologists don’t fully understand, autistic people can sometimes find direct eye contact uncomfortable. In my case, facial expressions and body language are another kind of noise that I’m soaking up, and sometimes this is exhiliarating and other times it can be uncomfortable and overwhelming. This alterity is very useful in some cases as I will tend to intuit the emotional state of each individual in a room based on posture cues and micro-expressions I just can’t really filter out. (note for interested parties: I’ve put up a separate post on the blog for those who might be curious around how to adapt to support folx who are aversive to staring or can sometimes find it overwhelming).

Feeling already overwhelmed and uncomfortable, I tried to sit a row back from the circle but the facilitator asked me to change seats so that I could “join the community” and sit in the circle. I was too disoriented and tired to put up a fight and a quick mental cost-benefit analysis told me that I’d not be able to discretely signal my need for accommodation without uncomfortable disclosure in front of strangers. So I moved and tried to deflect attention with a comment about how I’d “not wanted to disturb the group” with my late arrival. Determined to make the most of this session, I settled back into my seat and tried to discretely review the materials we’d been given which included a community “agreement”. As I settled into my seat, I winced from pain in my neck and lower back. This flares up occasionally as I have several prolapsed discs. I haven’t ever experienced a traumatic injury, but I’ve learned that “the body keeps the score”, and have noticed that the many neurodivergent members of my extended family all have injuries and chronic conditions related to the sustained holding of bodily tension. This is common for autistic people, with very high levels of co-occurring medical conditions (for more on co-occuring conditions and the bodily impacts of stress and trauma, I’d recommend reading Price, 2022 or van der Kolk 2014 listed below).

This was proving to be a bad day. But just to be clear, I experience at least one of these every month, at an all school away-day, cross-cutting research workshops, in my own lectures, project budget meetings, etc. etc. Sometimes meltdowns coalesce into longer term burnout. This is pretty common for Autistic folks.

The facilitator made some pretty concerning claims about mental health in the session, which I took down verbatim as I was already taking notes for the session. In talking about the ways that it can be hard to overcome personality disorder, they observed at one point: “some people have an investment in being unwell” and a bit later in the morning in sharing unqualified observations about schizophrenia that: “we don’t know whether, just living around someone [with schizophrenia] can have an impact…” Actually, we do know that conflating risk factors with causality is generally a bad idea, I wanted to say, but I remained polite and quiet as I didn’t want to get flagged early as a non-compliant participant and knew that there would come a time when I’d need to release the flood of thoughts I was holding in. This process of holding back can often be really uncomfortable, even traumatic for a lot of communities who think in ways that are divergent, and is part of the trauma we hold. It’s also the reason that finding community with a group of fellow autists can be so important as it’s a space where we can “infodump” and quickly get into a flow of familiar conversation safely.

After two hours of grating noise, sharp light, bodily pain, and being assaulted by the intense emotions of 20 people feeling their ordinary feelings, something had to give. I was teetering on the edge of a panic attack.

Now, for some people, this might be a cause of major concern, but I experience meltdowns on a regular basis, sometimes multiple times in a single day. My experience of repeated challenges and persistent forms of acute stress and trauma have led me to develop a sophisticated suite of coping skills. Many people who have never experienced anxiety before can find their first experience of serious anxiety, however small it may be, to be completely disabling. Like many other neurodiverse persons, I eat small forms of anxiety for breakfast. Friends and family who are not aware that I am autistic have observed that I can be unusually calm under pressure and able to handle what seem like massive amounts of stress without slowing down.

By the time we’d gotten to the lunch break, I could barely concentrate on anything much less hold a coherent conversation, so I grabbed some food and took the elevator outside to see if I could find a quiet sensory environment to collect my thoughts and prepare for the afternoon. I also, at this point paused to judge whether this particular workshop was a safe space disclose a disability around neurodivergence. It’s rare for me to find signs that a facilitator or programme, even in the best of cases, shows signs of proactive disability awareness (I’ll be doing a later blog post on how to passively signal you are an ally, so check the blog in coming weeks for more on this), but I do still scan for signs every time I start some new social interaction.

Here’s how my scan had gone: The course pack which was about mental health made no references to neurodivergence at all, outside of some very oblique references to disability justice in a section on personality disorders, which was terse and tokenistic. The facilitator had handed out a set of “standards” for conduct indicating how they hoped we could do the session together, but again, I noticed that there wasn’t really any way to challenge these without being quite open and disclosive. The facilitator had mentioned that anyone could step out at any time if they needed to, but the room arrangement required any person who did this to interrupt the session by walking in front of the entire group. The facilitator also specified that taking a break needed to be less than 5 minutes, which in my experience is not enough time to recover from a meltdown or overload and certainly not enough of a help to justify a public exit from the room. I had a sense that there was a desire to make accommodations but not a lot of thought about how these might need to work based on lived experience.

So I spent the lunch break downing some more ibuprofen, practing deep breathing and walking outside with noise cancelling headphones on and found stress levels to be coming back down. When I returned to the room, I discretely changed my seating position to be a few rows back, out of the circle. To be clear: I understand the reasons for the circle. As a (masked autistic) workshop facilitator, I’ve frequently used this configuration for sessions based on the assumption that it can instill a sense of intimacy and connection across participants. Though I knew this was unlikely, I was desperately hopeful that the facilitator would register my repeated attempts to get out of the “limelight” for what they were and leave me alone. This was not to be the case. I was again asked to move. This time I’d come prepared with a deflection, so in as unconfrontational way as I could attempt, I quietly responded by saying “I think this is what I would prefer to do right now”. This was embarrasing, but manageable, as I’d been prepared for it. And as a note to the other facilitators here, if someone seems to register discomfort, rather than see it as defiance, it may be helpful to open up access for the whole group: “…it is quite hot in here, I wonder if anyone else if feeling like it might be helpful to anyone else if we shifted our seating a bit?” Based on my hyper-awareness, I’d already noticed at least one other person in that group who had also been attempting to shift seats, but was less willing than me to engage in confrontation. After I made this statement, the facilitator verbally registered their displeasure to the whole group regarding my decision. Then, thankfully, they moved on with the session. It was humiliating, but not unexpected. At the next break, I left as continued participation was untenable. As I walked to the train, I felt jarred by the whole experience, but it was not unfamiliar. What was new was that I’d made a choice to step away and tried to register some of my needs publicly. It was disempowering to have them rebuffed and shamed, but felt like a consolidation of something important to have done it.

This is my personal experience, and I’m reluctant to suggest this is a good template for understanding the experiences of other neurodivergent colleagues here at UOB. But it gives you at least a small sample of what it’s like being covertly autistic at UOB. On one hand, there are many features of being part of academic staff here which are a dream. I’m expected to pursue my passions with tenacity and speak about them to others. I’m allowed to work flexibly, conslidating tasks to some extent in ways that work around my cognitive preference for focal attention and flow.

However, I’m also aware that there are colleagues who work at this University whose specific research into autism which will result in forms of oppression for my people, designing programmes of eugenics and conversion therapy (e.g. ABA). I’m regularly subjected to policies and work relationships which invite forms of surveillance and control which cause dangerous levels of stress and trauma for me. Our environments here are rarely adapted for sensory sensitivities, and often technology we use and communication channels we set up are explicitly oriented around allistic preferences (you can read a bit more on the blog for some of my thoughts around digital accessiblity and oppression).

Different kinds of neurodivergence come in for different kinds of treatment, and I won’t presume to speak for my ADHD, bipolar, schizophrenic, or personality disorder labelled colleagues. Public attitudes towards some forms of neurodivergence are less hostile, particularly if there is a sense that uncomfortable forms of difference can be dampened by medication and that those persons aren’t terribly antisocial. But I think it’s fair to say that autistic people are often placed in the category of “uncomfortable” or even dangerous. I’d encourage you to look into the Cara Lisette’s #IAmNotDangerous campaign and campaigns highlighting the disproportionate levels of incarceration and punishment directed at autistic people if you’d like to learn more. In conversations I have at least every other week, a colleague or aquaintence associates a difficult or dangerous person with autism. This makes me aware that being “out” will leave me either (1) navigating forms of implicit bias or (2) responsible for educating colleagues before we can have a basis for conversation about how I am different from them. I enjoy teaching, so this really isn’t so bad, but I do get tired sometimes of having to put a lot of my already limited energy into deconstructing stereotypes.

Colleagues in Edinburgh did a study of autistic experiences with mental health support and they came to the conclusion that people…

> were being routinely denied access to mental health support purely for being autistic, as well as being disbelieved by mental health professionals when they were in distress, and finding services just inaccessible even when they were offered support. (https://medium.com/@sonnyhallett/counselling-for-different-ways-of-being-b89730c6ca2)

This really maps onto my experience here. Of the 20 or so times I’ve shared about my autism with colleagues, or of the many more times I’ve spoken more generically about distress in the workplace, some of those times I’ve been met with disbelief or (unwitting) condescension. I have found forms of support that are putatively offered for people like me on campus to be radically inaccessible, often fine-tuned to manage the workloads of those offering support and not foremost around the vulnerability of those they are intended for. But perhaps most of all, our support policies are often designed by people who do not have lived experience of disabilities. It’s a tricky balance we’ve discussed in the ND network between trying to bring experience into the foreground to enable more careful planning and help educate eager allies (we love and are grateful for you!), whilst being careful not to drain ourselves dry psychologically.

I’ve mentioned this whole being out in public thing is quite new to me. Thankfully there are some other braver colleagues who are ahead of me on this. But if anyone here wants to chat a bit more about things I’ve raised here, or draw some representation into a committee, I am happy to have a chat and offer my perspective. If I could make one small request, it might be that before you make this kind of request, that you re-read this presentation (I’ll make it available on my blog) and also read at least one of the resources I’ve included below. Then we’ll have some shared learning we can process and discuss together, side by side.

I don’t know what my story means for this group, and I’l be eager to hear from you about your own experiences and learn together as we explore this theme today. I’m delighted that people are coming together to speak passionately about mental health on our campus and open up conversations that have been stifled for way too long. And I can also see that while that conversation is mobilising, it’s also early days for the ways we speak about and carry awareness of mental wellbeing and especially neurodivergence.

 

Some useful references:

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If you’re going to be around a table, bring some options for people to fidget or an activity that uses your hands (and warn people / encourage others to do the same in advance) so there’s no need to sit around staring at one another:

  • you can do  figet toys for the entire group at the meeting (fidget toys are awesome for everyone!) or something like build legos.

Or consider changing format / venue:

  • take your meeting “on a walk,” and talk while you walk (medical research has found that ambulatory movement can be very helpful for anyone who is trying to think out a problem!)
  • find a place where it’s normal to sit side by side: some of my best conversations have been sitting next to someone enjoying a view on a bench or in side-by-side chairs drinking coffee

And generally:

  • create opportunities for people to indicate different needs or deflect without cost; one very easy one is to encourage people to have laptops with them so they can “look stuff up”. I’ll often have my laptop out while I’m listening. Somteimes I’ll use this for closed captioning audio so I can read what people are saying when it’s hard to hear. Sometimes, I’ll be chasing down ideas that are inspired by what we’re talking about in greater depth than the conversation format will allow. Sometimes I need to step away from focal attention, tuning out for 5 minutes so I can regroup and rejoin the conversation. I don’t usually lose track of the flow of conversation as I can monitor it passively rather than actively and this kind of switching from active to passive can make participation easier

But remember two things: (1) it’s ok. We’ve done this before, and this one meeting isn’t going to be the thing that ends us and (2) the worst case scenario is having someone single you out and try to plan was to meet your needs on the spot in public.

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So I think this might be a good summary of an ND preferences wrt/ digital systems. The author doesn’t claim to be autistic, but I certainly shout “amen” like every other line. Would love to know if others relate: https://catgirl.ai/log/comfy-software/

I also think that customisability is important because it’s often the only way that many of us can getting software accessibility. Eg by making it that way ourselves. So I’m a hacker because I like to play with digital tools, but am also starting to realize that I HAD to become a bit geeky or I would have been left behind in a zillion ways. Get to the front of the pack so you don’t get left behind…

The HackerNews comment thread for that article is also a hot and interesting mess – highlighting the ways that different ND flavours and generational cultures frame how we are allowed to speak. I found myself wondering if it was a suitable proxy for what we might find if at UOB we could pull back the curtain… c/w: discussions of depression, suicide, ablism, and generally insensitivity: https://news.ycombinator.com/item?id=33053144

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Now that I’ve started paying attention I’ve realised there are hundreds of little papercuts slicing in at me from a hundred directions in my workplace (zero choice in software, short-notice (and often pointless) policy changes, 300 newsletters a year I have to read, module timetabling nightmares, construction noise, random beeping sounds everywhere, nightmare venues, a zillion pointless interruptions just the minute I get into the flow), and I’m really not sure where to get started. The few times I’ve brought something up informally, reactions have been either confused or defensive. I did push for a formal flexible work plan and managed to get a compressed teaching timetable, but the whole process took two years, a half dozen meetings, three separate forms, a huge input of energy, and left me feeling like I was supposed to be deferent and grateful for that systems had been temporarily shifted to run a different way on my behalf. I had colleagues who helped me with this process who were totally amazing about it all, but the process was still pretty deflating, and the end result really wasn’t what I’d asked for, rather it got shifted to a model that other people thought I needed.

What this has left me wodnering about if a useful shift in our approach to accommodation within our organisations is not to emphasise privacy and procedure, but to be relational, discursive and perhaps find ways to draw in a mentor or more experienced self-advocate with lived experience of disability as part of the actual process (e.g. sitting in meetings with you, commenting occasioally, posing questions etc.). My main problem is that as soon as things start to get difficult, I begin to doubt myself and wonder if I’m just special pleading (and there are systems and cultures which press us into this kind of thinking). Having someone with similar experience of the world to sense check a process might be quite useful. And for other people with less tenure and experience than me, I can imagine it might be even more vital.

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What tools and techniques do you use to preserve the flow (e.g. work around interruptions), lean in on your monotropic self, and mitigate challenges brought about by co-occurring bits (mood, anxiety, etc.)?

Here’s a first one to get us started: I find it takes a lot of emotional and mental energy to set up meetings. And it’s one of those things which comes at you interrupts flow and requires setup each time. And the consequence of this was that it was taking ages for me to jump in and get stuff organised even for simple one-to-ones. So I started using an online scheduling tool (first calendly.com then cal.com when calendly jacked up prices and went in a non-open direction). I created profiles for my time (e.g. when I don’t want to be interrupted, and also consolidating certain types of conversation so I can get in the flow with a series of meetings).

Using the tool had a learning curve – there were a few months where I had twice as many meetings as I could really handle in a particular interval and I had to tweak. I also found that I needed to create “public” style meeting options and “private” ones, so that friends could book in really any time they wanted with a much less restricted set of options, and certain less exciting work tasks could be put in a very specific bin. It has made a huge difference for my workflow and energy levels each week. I’ve also been pleasantly surprised to see how many (some neurodivergent) friends, colleagues and students were also really grateful to have a low-friction way of setting something up.

Cal.com opens up a website for people to click on date and time to set things up, and then automatically puts it on my digital calendar along with any special information I’ve asked for (which is very useful for one-to-one meetings with students so I don’t forget what they want to talk about). It can also do automatic reminders to people so they don’t forget the meeting and then it’s a robot nagging them and not me which is also nice.

At our University IT services migrated to a new off-premise exchange server setup last year and in the space of a week turned off all access to our calendars for external tools without warning or consultation (at least not any that I’d seen – and I would have provided a response if I’d been asked!). My attempts to explain what a severe impact this had on me fell on deaf ears. So I had three months where my diary and life were in total disarray last Spring. So I don’t use exchange for my calendar anymore. I’ve got another one offsite I use (on my own server if you’re curious). I put a message in my diary for every day of the year which warns people that I don’t use outlook for my diary. The downside is that it’s a pain for colleagues doing meeting requests in exchange. Upside is that I don’t have to worry about IT changing policies on me without consultation in the future, which I’m sure they will do.

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I’ve just been reading a WONDERFUL piece of work by Sonny Hallett around diversity and why our organisational cultures resist it. Anyhow – there’s a longer form piece here https://medium.com/@sonnyhallett/counselling-for-different-ways-of-being-b89730c6ca2 which I highly recommend giving a read (also via video here: https://www.youtube.com/watch?v=irIruFqFTMc

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Is it just me? I’ve noticed that much of what used to be individual emails are getting wrapped into omnibus newsletters. My working theory is that this arose as a form of communciation elsewhere (maybe the push towards mailing lists as part of a personal platform?) and has since gotten folded back into everyday work spaces and practices.

It took me a while to realise this but it dawned on me last year that this form of communication is a lot less accessible for me and that it’s a problem with noise compounded by a problem with navigation. Here’s the scenario: if I get ten emails, which are each about a single “thing” I can quickly sift pointless noise from important announcements by paying attention to the subject lines, scanning opening lines and deleting before deep dive reading. When it’s in a newsletter, I have to scan in a linear way (worse still, sometimes leaving my email application and the flow of work which pertains there for a PDF reader) and can’t sift as easily for information which is actually for me, or actually necessary knowledge. The end result is that I process the entire thing in great detail.

I think that maybe MS Teams has the effect on me of making all of life like this because there’s not much one can do to “sift” – conversations can’t be easily threaded, so you have to read everything when you’re just trying to find a reply. I’m wondering if anyone else finds this to be a struggle? If it’s just me, that’s one kind of request I need to make. But if there are others also struggling, then maybe there’s good reason to ask if colleagues doing this kind of bundling can do it in a more careful way… Just wondering which I should pursue! Thus are the travails of unmasking, developing a disability identity, and learning on the fly how to request (and be rejected) accommodations from friends and colleagues.

This gets even more oppressive when the people who are driving these changes around sending correspondence in a newly consolidated way start to set rules on how others can’t use alternative forms of communication. Please stop bombarding me with all these short emails – it’s so unhelpful just put it in the “bullitein”! or worse still, requirements about how we must continually attend to notifications on MS teams, leaving our email on at certain times of the day, responding at certain regular intervals etc. The idea that you need to just be open to a bunch of small distractions across the whole day seems about as sterotypically allistic as I can imagine. Different kinds of cognition may require consolidation of work tasks. And this in turn can make a person/worker more happy and productive to work in a neuro-affirming mode.

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I’ve had three weeks of great energy, finishing things, starting things, and starting yesterday I can feel my executive function flagging. Big time. And this loops in with increased load of anxiety, insomnia, death spiral of rumination and unhelpful but seemingly inevitable paralysis on 25-75% of the things I need to get done. 🙂 And I’ve observed that some other folks are hitting the wall now too. I’ve been watching this cycle happen to me for a while with a new level of self-awareness and thinking a lot about how to put some supports in place for when these things happen. Or better yet, focussing on forms of work that don’t contribute to the cycle and avoiding those that do. But this is VERY hard to do, in part because, at least for academics, the “lone hero” executive model seems to be default.

I’ve identified two possible long-term wellbeing helping fixes which both require structural change: (1) shared co-leadership so one can pool abilities & inabilities with a colleague (ideally who already knows you well enough that you don’t have to spend months educating them about autism before starting) – (2) (at least for academic staff) working in partnership with support staff to divide up work tasks and planning. Having another person in the loop naturally helps with executive function as someone else can mind deadlines / milestones and chase me if I’m flagging, breaking the loop (sometimes). Both both of these models seem to be REALLY hard to implement in a lot of higher education management structures.

In these organisational cultures leadership can’t be shared, or has unhelpful externalities. It can hamper promotion prospects for your co-leader if they’re more junior (or female) as bias prevents people from seeing achievements as shared. But also workload allocation models prevent this practice as the work doesn’t split 50/50, but ends up being a bit more like 65/65 as there is additional labour in being collaborative (I think the overall results are improved, but the practice is not “lean”). And then sometimes there just aren’t enough people around. And you have to be careful about not using & abusing your allies (if you have them).

I have been successful in forging partnerships with support staff at UOB, and I have massive gratitude for those folx who have been willing to come alongside, listen, and share their energy in making great things happen for students and ressearch projects.

BUT it has become a habitual pattern that when I do find a successful partnership with a colleague where we can divide up tasks in a helpful way, have a change to get to know one another and develop a good flow – within 3-6 months of sorting that out, they’re seconded to a new position in a different team. This has happened to me a half dozen times. And it’s not just inconvenient, but actually there is fallout, as I can’t manage a portfolio solo that I can with collaborators, and then I have to cancel events and walk back activities that I’ve commited to. And it’s hard to explain why this is the case. I’m not sure why so many Universities have such a revolving door approach to support staff teams, but this seems to be endemic. So I’ve found myself starting to avoid forging partnerships like this because the risk is just too high. And you can’t ask a person if they’re going to stay in a post for more than 12 months, as I think that’s impolite?