Posted on
by

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:

Leave a Reply

Your email address will not be published. Required fields are marked *