Reflection #101 (23rd March 2025 at Essex Church / Kensington Unitarians)
As I said at the top of the service, this past week has been ‘Neurodiversity Celebration Week’, and so this morning we’re exploring the premise that is simply stated by the autistic author Temple Grandin in words that are on the front of your order of service: ‘The world needs all kinds of minds.’
Part of the impetus behind tackling this theme today was a conversation I had with a friend recently – and I should probably say upfront that this is going to be perhaps a more personal reflection than usual – I am hoping it will be useful for me to share a little of my own first-hand experience on this occasion. So I was speaking to my friend – a new friend, someone I haven’t known very long – and I mentioned in passing that I am autistic. And he replied ‘you don’t seem autistic, if you don’t mind me saying’.
??
Now, this is a completely understandable response, especially when you consider that he has only known me for about five minutes in the grand scheme of things, and I knew myself for at least 45 years before I even had the first inkling that I might be neurodivergent in some identifiable way. When my mate said ‘you don’t seem autistic’, it was said completely straight, no sides, no unkindness or judgement either way. He’s a lovely man and wasn’t being funny – he was just surprised, I think – so I found myself trying to explain, off the cuff, what it is like (for me) to be autistic – how it shapes my experience of the world, how it creates some challenges, how I have found workarounds for some of those challenges and not for others, and how it absolutely comes with brilliant gifts and strengths too. Possibly I got a bit defensive about it. As you’re probably aware, there has been a bit of a backlash lately to the increased diagnosis rates of autism and ADHD, a lot of scepticism, and I instinctively found myself trying to justify my diagnosis. I came away from that conversation thinking ‘I didn’t do a very good job of conveying what it’s like to be me’.
I should acknowledge early on that this gulf of understanding ‘what it’s like to be me’ is not just an issue between neurodivergent and neurotypical people, of course. I couldn’t help thinking back to my old philosophy lectures (this may seem a bit of a leap!) and the famous essay by Thomas Nagel titled ‘What is it Like to be a Bat?’ (he means a bat in the sense of the little nocturnal flying mammal). In case you’re not familiar with the article it uses this thought experiment of trying to imagine what it is like to be a bat to explore ideas about consciousness and the mind-body problem. I’m not going to try and summarise the argument of that essay here (and it’s not that pertinent but it’s a fascinating read if you like that sort of thing!). However, it inspired me to think about some parallels that are relevant to our subject today, I reckon. If you try and imagine what it’s like to be a bat, one thing you’ve got to take into account is that, though they are mammals and as such they have a fair few things in common with us humans, the bat’s primary method of perceiving the world through sonar and echolocation is so different from anything that most of us humans have direct experience of (though I have heard stories of humans who’ve learned to echolocate through clicks!) But generally the neurological equipment of bats is so unlike ours that we can’t truly know what it’s like to be one. We can try to imagine – empathise with the bat – but our imagination will only take us so far. There’s something about the subjective nature of their experience that is ultimately impossible to grasp.
If we bring our attention back to humans now, on the whole we haven’t got such drastic and obvious differences between ourselves as there are between humans and bats (that seems a funny thing to say but stick with me if you can!) but still there is great diversity and variation in how we humans are wired up neurologically. You might think of it as us each having different operating systems – I’m not sure how far we can stretch this metaphor! – but think of Windows computers versus Apple – or Android versus iPhones. In broad terms they do much the same thing but there are differences beneath the surface which bring their own advantages, disadvantages, and quirks, shall we say – there are often things you can do more easily on one than on the other – they’re all configured slightly differently. And, broadly speaking, much the same goes for brains, it seems. But it is really hard to convey much about the workings of your own operating system to anybody else! In autistic circles a lot has been written about the ‘double empathy problem’; there’s long been this widespread belief that autistic people have an impaired understanding of the thoughts and feelings of others, but these days it’s starting to be acknowledged that any gap in understanding is mutual, it goes both ways. When people with very different experiences of the world interact with one another, they will struggle to empathise with each other, and that is just as much the case for neurotypical people, who often don’t seem able to see that the neurodivergent way of being is just different, not wrong.
It brings us back to this notion of subjectivity, and the ultimate unknowability of what it’s like to be anybody other than ourselves (and the difficulty of grasping the built-in quirks, possibilities, gifts, limitations or constraints of any mind that is not our own). Rather than asking ‘what is it like to be a bat?’ in everyday life, we’re trying to live alongside, and understand, other humans, so we’re implicitly dealing with questions of ‘what is it like to be Jane?’ (or Emma, or Antony, or anyone else we’re in relationship with). There is this invisible inner life, which we might attempt to convey to each other through language, but language is limited, and our own self-understanding may well be limited as well. We might easily go through life with no awareness that our neurological operating system is significantly different to anyone else’s – just because we’ve got nothing to compare it to!
And this is probably a good moment to remind ourselves that there are so many different modes of variation – so many ‘kinds of minds’ – though we might primarily be focusing on autism and ADHD as the ones that are increasingly making news headlines we could also be thinking about things like dyslexia, dyspraxia, OCD, PTSD even (we’re increasingly thinking about trauma these days). Some definitions of neurodiversity are more inclusive and the boundaries of the concept are a bit fuzzy.
Returning to my own story – like I said, I didn’t realise I was autistic until very recently – it took me decades to even have an inkling, then I had to contend with long NHS waiting lists to be assessed, and I only got my formal diagnosis of ASD level 1 (formerly known as Asperger’s) last September. For most of my life I’ve been aware of my various peculiarities and difficulties but never previously saw them through that particular lens. It’s not something that my parents would have had any awareness of back in the 1970s and as you may know a lot of women have gone undiagnosed in part because of differences of how autism tends to present in boys and girls. The family story was ‘Jane’s a bit funny’ or ‘Jane’s a bit shy’ – ‘Jane is very fussy about her food’ or ‘Jane doesn’t like parties’ – sometimes put more negatively as ‘Jane is antisocial (even rude)’ or ‘Jane is awkward and intense and won’t just get along with others.’ People who’ve known me since I first came to this church in my mid-twenties will tell you that I hardly spoke a word to anyone back then. I sat at the back and lurked (and even to come into this unfamiliar space in the first place was a huge deal for me back then, though it got easier over time, as the familiarity, repetition, and routine help soothe me enormously). Over the years, I realise, I’ve spent a lot of time on my own (I still do) because I get overwhelmed easily by so many everyday situations and experiences that other people seem to find neutral or enjoyable. Even when part of me wants to join in, I am always checking for an escape route or a pass option, and in situations where I can’t see a way to bail out in an emergency, I often won’t risk participating in the first place, for fear of having a meltdown and making an exhibition of myself (especially in situations where I’m required to be the responsible adult in the room and I can’t just run away!)
Another dimension that I’ve become aware of over the years is that – from the outside – I think it’s been baffling to friends, colleagues, and tutors that there are things that I seem to be capable of doing sometimes, in certain circumstances – that I can sometimes do really well, and even enjoy – but at other times I become completely incapable, freeze up, grind to a halt, simply shut down and refuse. Often, when I’ve got stuck on a task (especially a writing task) and a deadline approaches, people will say ‘just do a half-arsed job of it to get it done’, but that option somehow isn’t available to me; it’s like I need to complete some inner process and exhaustively work through all the connections in my mind before I can find any words at all to put down on the page. It’s become apparent to me that sometimes it takes me a lot more time and energy to do a thing, including time around the thing to build myself up to it and recover afterwards, than others expect. I’ve often worried that that this makes me come across as lazy or ill-disciplined or wilfully awkward (and maybe I overcompensate). I suppose the main take-home from this bit of my experience is that we just can’t know how difficult (or easy) anyone else is finding things that we find easy (or difficult)! Or at least we can’t tell by looking. But we can listen to what people tell us about their experience. And we can try to give people the support and accommodations that they need in order to flourish.
Not every neurodivergent person has a formal diagnosis (nor wants one) – but many people (including me) have found it helpful to get an official confirmation of what they already kind-of knew about themselves. Diagnosis has helped my self-understanding – it has helped me to feel better about both my autistic struggles and my autistic gifts – it has put me in touch with a wider community of neurodivergent people who have similar experiences and that’s been very validating and supportive. It’s also helped me to get clearer on what support I might need in order to manage everyday tasks a bit better, and it’s empowered me to rearrange my life and work accordingly, and ask for some of the accommodations that would make a real difference. And often the accommodations are really small changes (to do with transport, or food, or allowing for time-out) which might seem slightly odd to others, but are hardly any trouble to put into place, and they remove significant sources of stress.
For years I wanted to be a minister but couldn’t see how I could possibly cope with the expectations placed on a minister’s life. There seemed be just one model of ministry, one way of doing things, and you could either do it that way – conform to the norm – or not do it at all. I felt so torn. I was sure that I was called to ministry and had something useful to offer but I feared that trying to conform to the traditional way of doing things would break me. Thankfully here at Essex Church I have been very lucky to have such an understanding committee, who have been flexible and supportive, and made accommodations which enable me to flourish. Without them I just wouldn’t be able to do ministry.
And I’m really aware of all those people who are not so lucky – people who have got incredible gifts to offer to the world, but who are prevented from doing so – largely dis-abled by arbitrary and unnecessary assumptions, norms, and conventions about how things should be done – or by the reluctance to make the often quite simple accommodations which would en-able them to flourish. This is, of course, a justice issue. We can collectively choose to give people the support they need. And unfortunately, it’s a very live issue right now, in light of the appalling culture wars being stoked around autism and ADHD, and our government’s proposed cuts to benefits for disabled people.
There’s just too much to say about this topic! But perhaps the most important thing to take away is, as ever, an affirmation of our shared humanity, and the inherent worth and dignity of every person. Each one of us carries the divine light within. So let’s do what we can to embrace diversity in all its forms, encourage flourishing, and enable everybody’s light to shine. In that spirit I’m going to close with an adapted prayer-poem by Erina Kim-Eubanks, titled ‘For a House We Can All Live In’.
God of creativity – of diversity, multiplicity, and accessibility, You say in your house are many rooms. You build a space where all can dwell and live exactly as who we are – without shame. So forgive us for the ways that we have shut out and shut in – for making barriers to your presence, creating hierarchies of bodies and minds, and building environments that are disabling. Help us co-create with you a house that welcomes the fullness of our selves – spaces that are accessible and psychologically safe – welcoming of neurodiversity, acknowledging the wholeness of who we are, our complete need for each other, and every gift we bring. May your way – in which every kind of mind, body, and spirit are honoured as valuable and good – be made manifest in our world, so that all your children have room to flourish. May it be so for the greater good of all. Amen.
Reflection by Jane Blackall