Friday, 10 September 2021

Quakers, ADHD, and Me

A two dimensional sculpture made of pipe cleaners. A yellow pipe cleaner shows a human head in profile, while various colours and thicknesses of pipe cleaner emerging as swirls from the top of the head.
Visual representation of ADHD by Tara Winstead
I’ve known for some time – as long as I can remember – that my mind doesn’t work like most other people’s. I learned about autism over the years, and while I identified very strongly with the sense that autistic people shared of not understanding how other people’s heads worked, I didn’t identify with any of the specifics. I knew I was different, but I knew I wasn’t different that way.

In the last few years, I learned more about ADHD, partly through exposure online, and partly because I simply needed to for work. Things started to make more sense. People who know me, and know the common understanding of ADHD, might find that confusing – but people who know me and have deeper knowledge of ADHD seemed to think it made a lot of sense. So I started the process of seeking an assessment.

At one time, much as with autism (or for those who prefer to differentiate it in that way, autism spectrum conditions), ADHD was seen as something that would inevitably be spotted in childhood, so services to assess it in adults took some time to catch up. More so than for autism, there was even a sense that people usually ‘grew out’ of ADHD, so if it had been missed in childhood it wouldn’t matter, and adults – even those diagnosed in childhood – didn’t really need services. Still, I looked into what GPs were supposed to do if someone came to them thinking they might have ADHD (I don’t like saying ‘have ADHD’, but unlike with autism there isn’t really an alternative, an adjectival form), and went to my GP to talk about it. They promptly referred me on for full assessment, and warned me it would be a long wait.

It certainly was that, but when my name came to the top of the pile (after two changes in the provider of the service in my area), things moved very quickly. I had a questionnaire to fill in, and one for my mother; I rapidly had a videoconference appointment with a consultant, who was quite happy from those forms and that one consultation to diagnose me with ADHD. I now await a “psychosocial intervention” about living with ADHD, tailored to adults; medication is complicated for me, given my comorbid narcolepsy and its treatment.

All that is background – the meat of what I want to tell you about is how this has affected my experience as a Quaker. It’s an interesting question, because it is almost entirely retrospective; my diagnosis occurred during the Covid-19 pandemic, and I have not been to any Quaker activity in person since it was confirmed. All the same, it is the time that I didn’t know why I had certain differences, some difficulties, that is important. It is just that now I can understand them better.

Everyone with ADHD is different. The full name of the condition, attention deficit hyperactivity disorder doesn’t really do it justice. The symptoms are often grouped into three categories, with diagnoses often specifying one of two or three types (or ‘mixed’): inattentive, hyperactive, impulsive. Often the latter two are lumped together, though they are not really the same thing.

The inattentive symptoms of ADHD can manifest in various ways, but all amount to a difficulty maintaining attention to things, as compared to a typical person of otherwise similar ability (and, for children, similar age). The hyperactive symptoms can be the stereotypical ‘needs to keep moving, can’t keep still’, but can also be a need for mental activity. Impulsive symptoms are perhaps simpler – a tendency to act without as much thought as others might bring to bear. Even so, it manifests in many ways; it can be a tendency to blurt out thoughts without fully thinking it through, or even waiting for a reasonable turn in conversation, a tendency to spend money without restraint, or behaving without due restraint in interactions with other people – a tendency to violence or unwelcome sexual advances can be examples.

These categories don’t obviously cover everything, though. The fact we tend to be distractible is covered by inattention, but that doesn’t really convey the pattern many people with ADHD experience in many cases of distraction. It’s not just “so, what I think we should do is– hey, look, a squirrel!”. What happens next is often an internal process that might include such questions as “where does the word squirrel come from?”, “what different types of squirrel are there, anyway?”, or SOMETHING. We can experience what some term hyperfocus, what might seem to be the opposite of inattention, where we become so focussed on some thing that we have reduced awareness of the world around us, and potentially neglect hunger, thirst, responsibilities to others, or indeed the call of nature (at least until it becomes overwhelming). Sometimes the object of our hyperfocus is productive, some work we are completing; sometimes it is not. Sometimes it is something that other people can see that we are doing; sometimes it is not – sometimes we seem to just be staring into space, but our minds are busily working on something. Hyperfocus could be very helpful, if it could be controlled – but generally it cannot. We can’t start it at will, and we certainly don’t control when it stops.

So, how has this affected me, as a Quaker? Well, let me explain how some of these factors manifest to me, just those ones that have most effect on me in Quaker interactions.

The first is very simple – sitting still. Most people prefer to be physically still during worship, and/or believe in an expectation, even requirement to do so. For me, as with many other people with ADHD, it is simply not an option. You’d have to tie us down, and then we’d be moving us much as our bonds allowed. In the most extreme examples, rarely seen much past the end of puberty but more common in children, just staying seated for a prolonged period – for some as short as a few minutes – is psychological torture, even if it is possible to move around in the seat. If the situation really enforces it, like being strapped into a car seat, it leads to a fraying temper and, again mostly in children, what might be seen as ‘bad behaviour’. So, even without the other factors I explore below, I don’t sit still in worship. I maintain what inward stillness I can, but just sitting still for an hour – even half an hour – isn’t going to happen. I’m sure this bothers (some) other people more than they let on, but it seems largely tolerated.

One thing I can do to mitigate it also helps with another sort of problem – concentration. Now, the prayerful state of Meeting for Worship is not precisely like concentration on something; for many it is rather the opposite. But it is my experience that it calls on the same faculty that concentration requires and that ADHD impacts. Perhaps that faculty is simply the ability to stop one’s mind jumping from topic to topic and disappearing down rabbit holes. In any case, many people with ADHD find that a little physical activity helps one to concentrate, in that sense. Perhaps that is one of the virtues of set prayers or mantras; ADHD is, like most neurodiversity, a spectrum, and a great many people who don’t meet clinical criteria for it, or experience any real difficulty from it in their lives, have some characteristics of it to some extent.

Attaining a proper prayerful mind-state is a common goal in many faith traditions, though in some cases it is only in the more mystical traditions within a wider faith.Photograph of a mandala in orange, red, yellow, cyan and blue. As I have written before, the Quaker way is inherently a mystical path. In many religious traditions that seek that prayerful, worshipful state of mind – or various other not-usual states of mind – mantras and set prayers, spoken aloud or otherwise, are a tool that is used. Set movements might also be used, as in some forms of the Eastern Orthodox tradition of hesychasm, or visual prompts, such as visual-cognitive use of mandalas or (as seems to be increasingly popular with British Quakers) labyrinths. Quakers traditionally try to reach this state in silence, and stillness, but that outward silence and physical stillness can, for many – including many with ADHD – be a barrier to attaining the right mind-state, just as for others it is a way in to the same. If such a person can occupy the right part of their mind to still the shifting-focus, over-active elements of the mind. This also applies to some people with intrusive thoughts due to mental health problems. A certain sort of activity stills the non-prayerful, unhelpful thoughts, allowing thinking to move into a prayerful state.

However, actually applying such strategies can cause others to think that you are not engaging properly in the silence, or they may claim (fairly or otherwise) that it is distracting to them. Strategies that work for me include reading and – to put it as precisely as I reasonably can – fidgeting, and I am quite sure from things that work for me in other contexts that doing simple crafts, such as yarn crafts would work (if I was in the habit of doing any such thing, anyway). Being able to get up and move around without fearing judgement or causing confusion would be even better, which brings me to another observation from my own experience – the impact of Quaker Meeting being done remotely.

Actually, this has applied to my work as well, and I am going to miss having my work meetings by audio conference. In a large enough Meeting for Worship via Zoom, people aren’t likely to notice if you turn your camera off. With your camera off and a cordless headset, you can maintain your presence, move around so as to help maintain your presence, and no-one is any the wiser.

I think ADHD has had positive impacts on my life as a Quaker. I have come to view my voracious and wide-ranging curiosity as an expression of ADHD traits. This is not to say that no-one has such attributes without it being ADHD, but having learned about the condition and the underlying – rather than stereotypical – features, what the differences in fundamental function are, I feel that the connection is there in my case. My reaction to being presented with a new thing I haven’t heard of is usually to go and learn about it; people with ADHD don’t necessarily lack attention, despite the name, but rather that attention is easily swayed, easily drawn to new things. In my case, and in the case of plenty of other people with ADHD, this sudden draw on attention isn’t necessarily in itself transient. We go off and read about it, and potentially read a lot about it. Sometimes hyperfocus comes along, and we fall into a seemingly endless rabbit warren of new things to learn about. That has given me a greater ability to seek light in many places than I might have had otherwise.

On the other hand, it does sometimes cause difficulty with the expectation of giving service as a Quaker; not any lack of willingness, but a difficulty completing tasks. A common, in fact both stereotypical and commonly diagnostic feature of ADHD is a tendency to start many tasks or projects and finish few of them. I can’t comment broadly on people with ADHD and why this happens, but my experience of it is twofold: first, there are so many ideas and so many things that I want to do that I start many things, and this obviously presents a practical barrier to completing them; second, the ‘last mile’ of a task or project is frequently a very dull part of it. Sometimes it’s even the middle part that’s a drag – conceptualisation and high-level design of a programming project, for instance, is much more interesting to me than sitting down and actually writing the code.

How does this affect me giving service? Well, it tends to make me over-commit to tasks or roles, and then fail to fulfil them properly. Not that I’ve failed terribly badly until my current mental health crisis (which is still getting better, but not making much progress on the core of it – certain Quaker volunteer tasks), but I crash deadlines regularly, just as I did in my life as a student, through undergrad and two masters degrees. On the other hand, when my brain lets me focus on a task, I can be incredibly productive, and tend to produce work that is of a high quality in terms of its primary purpose, albeit often flawed in other ways.

On the imaginary third hand (comparisons to Zaphod Beeblebrox to be held for another time), ADHD commonly causes problems with attention to detail. In my case, this manifests in a sort of narrow attention to detail, possibly as a subconscious adaptation. For example, when I write something in prose to be written and appreciated, I write – I am told – fairly decent prose first time, with only minor edits necessary. When I’m writing prose for academic purposes, to convey or demonstrate understanding of complex ideas for an academic audience, my prose is far less elegant, and frequently requires extensive editing to make it less verbose and more comprehensible, even for that academic audience, because I am focussed on the clarity of some complex idea rather than the clarity of text. When I write a policy document or procedure of some sort, I am very good at providing even for unlikely scenarios, spotting loopholes and closing them, covering all the bases. However, what I produce tends to be even more obscure and hard-to-follow than the average policy document, and requires extensive editing to take out unnecessary redundancy and make the sentences shorter than a typical paragraph.

In all cases, but especially in that third case, a component of editing is to either replace obscure words with more commonly understood ones, or to add explanations for them when there’s a good reason to use the obscure word. I also have an odd habit, especially when typing, of mixing up homophones and near-homophones (words that sound the same, or nearly the same, but are written differently and have different meaning), typing the wrong word, even though I know very well what I mean. The wrong word just comes out of my fingers – something that is perhaps only possible because my typing is fluid enough that I don’t have to think about what keys I am hitting, I just think what I want to type and my hands do the rest. From the common bane words of schoolchildren – they’re/their/there and its/it’s – to everyday words that fewer people get wrong, given their very different meanings and uses, such as flour/flower (which are homophones in some dialects and near-homophones in others), I find myself typing the wrong things and not realising it until I look at the text on the screen – which means immediately when I am writing straight from my head, but often later if I have been, for example, copy-typing.

All three of these hands impact my Quaker work. I rely on others – usually my wife – to adjust, edit, review my work, to moderate my behaviour, to make sure I do the work I’ve said I will do, and to stop me saying I will do too many things. I am fortunate that she is largely happy to do so, though it sometimes means her reviewing writing that she has little or no interest in for herself, and she doesn’t like how firm she sometimes has to be in order to make me be sensible about my approach to work. I know she knows that I appreciate this, but I do want to make sure other people know I do as well, at least those who have some idea how much she does for me. My achievements in the last 17 years – and some of them are not inconsiderable achievements – are all, in some sense, her achievements as well. While I did the work for them, I would not have done so without her help. She would also want me to mention that this goes both ways; while we have different needs, we both support each other in different ways – each of our ability to engage in and move forward with life, in the ways in which we each choose to do so, is dependent on the very concrete and tangible support of the other.

Four stick figures drawn in white chalk on a green board; three are standing straight, while the one on the right is doing a cartwheel.
This doesn’t cover all the ways in which ADHD affects me, even all the ways in which it impacts my Quaker experience. It should give you some idea of my experience in the ways which have most impacted on my Quaker experience, and give you some food for thought on ways in which we can be more inclusive, welcoming and supportive of a neurodiverse worshipping community.

For instance, we can take the most obvious example, already clear in my explanation above – the expectations most Friends have of ‘what (unprogrammed) worship looks like’. For most Friends, it is a room of people sitting still, in silence, attention focussed inward-and-outward, silent inwardly and outwardly in waiting on the Spirit. Yet that particular fixed image makes the Divine less accessible for some – not just for some with ADHD, but for some with mental health difficulties. Depending on the individual, inward silence – the actual, important silence in terms of making contact with the Divine – can best be achieved while doing needlework, knitting, or even pacing the room (consider the example of walking meditations). While many of our community see outward silence and stillness as essential for their own inward silence, it is impossible for such people to join in worship with the whole community, at least in person, without either failing to properly experience worship themselves or worrying about bothering other people – and indeed risking sometimes quite insensitive censure. A bridging move might be to hold some Meetings for Worship that explicitly allow such behaviours, and those who are sure they cannot worship while such things are going on need not participate. Yet we cannot be a truly inclusive community while such behaviour is segregated into a separate Meeting for Worship; I would argue that we should embark on a path towards enabling all to worship together, equipping those who personally function best with stillness to maintain that even when others around them are decidedly not still. There may even be practical steps we can take to mitigate entrenched ideas about how people should worship, such as revisiting how we arrange seating. It may take a generation, or several, but it is attainable.

We all need to learn more about the different ways that people function, to enable neurodivergent Friends, and Enquirers, to be part of our community. It is not just about ADHD or mental health conditions, which I can speak of from my own experience, but about autistic people, dyslexic people, dyspraxic people (or, for those who prefer ‘people-first’ terminology, people with autism, dyslexia or dyspraxia – my choice of language reflects my own approach to the theory of disability, and is more common in Britain, though ‘people-first’ language appears to be more popular in America), and all the many ways in which people can vary in the ways in which their minds work. There are ways in which we, as a community, conduct ourselves, expectations that we impose, often subconsciously, that impact people experiencing any and all forms of neurodivergence. For many, there are ways in which we are a more comfortable religious community than others they may have experienced, but still we do things that make life difficult or uncomfortable for them. We cannot represent a perfect community for all – there are contradictions between the different perfections for different people – but we can do better at welcoming, including, supporting, and valuing people with diverse ways of thinking and experiencing the world.

We have a Testimony to Equality, we talk a great deal about being welcoming and inclusive, and there are many things we need to think about to live up to those aspirations. Neurodiversity is one of those, and the fact that, at any given time, our focus might be on others is no reason to fail to consider that, and everything else. To do all things at once may be impossible, but if we do one or two things without thinking of the others, we risk failing – both in terms of intersectionality, considering people who fall into more than one category that we currently fail in terms of equality, and in terms of making things worse for one group in order to make things better for another.

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