Towards a metaphysics of neurodivergence

What might be deeply right with us?

Dear friend,

I haven’t written as soon as I would like to have, in part because my beloved uncle passed away last week and I am mourning the loss of him. As a result, I’ll probably be working less than I usually do in December.

Heads up! This one could be rather intense for some people to encounter, and it’s written in a somewhat cavalier style. If you have a mental health diagnosis that is essential to your navigation of this world, I suggest you approach this letter with caution and pay attention to how you feel in your body when you’re reading it. You can opt out any time; I won’t mind, and you won’t miss anything. ❤️ Please take good care of your dear self.

What sort of deal do we strike when we seek or receive a diagnosis?

Paid subscribers can access the audio version of this post below.

While I made my eggs and leftover veg this morning I listened to the first part of the an interview with comedian Miranda Hart on the BBC podcast Young Again. Hart has recently released I Haven’t Been Entirely Honest With You, a book narrating her struggle with, and recovery from, chronic illness over the past ten years, during which she was absent from her previously successful career in comedy. I had only to listen to the first few minutes of the podcast episode before my head was full of thoughts I wanted to share with you.

What really struck me was the role that diagnosis played in her story. Her elevator pitch went something like this: “I was suffering from an obscure illness for years, until I finally collapsed. Then I got a diagnosis, and everything changed.”¹ It’s a formula that we have heard many times lately, especially with regards to neurodivergent conditions like ADHD and autism, and especially from women, who have been overlooked by western medicine in general, and who are just now starting to find words to explain the struggles they have internalized over a lifetime in (often oppressive) educational institutions, social situations and workplaces. People all around me are seeking and receiving diagnoses for ADHD and/or autism, and I see that many of them are getting the validation and support they needed long ago. I celebrate alongside those thousands of friends and strangers who have found peers and resources inside the discourse of neurodivergence. And at the same time, I have a slightly different experience of these matters which I will risk sharing here, in case it throws light from a slightly different angle, and causes some mote of value to come into view for someone else.

Dutch St. Lydwine, who suffered from chronic illness beginning with a broken rib from a fall on the ice.

Woman has Mysterious and Ongoing Illness That Western Medicine Can’t Help or Actively Makes Worse is a narrative we hear all the time, and one which I also sometimes have lived inside. The promise of medicine is that where there is a diagnosis, there follows a helpful treatment, or even a cure. When the problem is straightforward, a diagnosis is a lifeline. You have a bacterial infection. Awesome. You need antibiotics. You broke your leg. You get a cast! You heal. After all, isn’t science for making things better?Otherwise what is a diagnosis for? That question has been arising for me, again and again in recent years: What is diagnosis for? When the diagnosis is a “learning disability” like ADHD or a “condition” like autism, where the barriers folks are facing are primarily social and economic in nature, it seems to me the purpose and outcome of diagnosis is much less clear-cut than it is for more straightforwardly physical medicine.

I was one of those mythical, enviable girls who was diagnosed with ADHD “early,” when I was just fifteen, while most women of my generation received diagnoses later in life, when the damage of years of misunderstanding was already done. I had been fighting with my parents, stealing booze, talking back to teachers, and skipping school, so they took me to a specialist and had me fill out a multiple-choice questionnaire. I found school deeply boring. CHECK. I often felt uncomfortable and restless. CHECK. I sometimes stared out the window and dreamed of other, more beautiful worlds. CHECK. And the results were delivered! I had ADHD. And I was medicated (and became addicted to amphetamines). And I was granted academic concessions when I got to university (sometimes). AND — and this is a bigger and over a lifetime than I think we give it credit for — I was given the clear signal, early in my life, that there was something essentially awkward or objectionable in my nature, something certifiably “wrong with me.”

And what was wrong? I had powerful emotions. I resisted being forced to sit still all day long, indoors, learning things that were often irrelevant to me. I had an active mind and assertive voice. I called adults out on their shaming and oppressive bullshit. Of course it was annoying. But a lot of what is annoying about teenagers is produced the fact that we wake them up in the middle of their natural sleep cycle and force them into a minumum-security prison with a herd of people the same age as they are, restricting their biologically determined highest priorities: social interaction, food, interest-based learning, real-life risk and challenge, and movement.

Sure, being diagnosed with ADHD helped me to navigate a system that wanted to control me or exclude me completely. But it still located the problem inside of me, rather than the deeply flawed system I found myself in. And the older I get, the more I believe that was an error and a harm. When I was young, I longed to be sent away to boarding school. I loved my family very much, but I had a feeling that had I been in a situation where my gifts were recognized and my intellect challenged, I might have spent my time at school flourishing instead of searching desperately for escape routes. It’s obvious my parents couldn’t have afforded such a luxury, but as a teacher myself, I have seen from the other side how engaged and passionate children turn resentful and self-destructive when the features that make them uniquely beautiful and valuable are ignored, or worse, pathologized.

There is a huge flaw in the fabric of modern health discourse and practice, and especially that relating to mental health, that has been illuminated by Gabor Maté and other perceptive medical professionals in recent years. That problem is that medicine insists on viewing our human suffering as divorced from our social and cultural context. It wants to cure “us” of diseases that are more often than not, symptoms of an unhealthy environment, rather than a faulty “us.” When mutual care is not an essential part of the broader culture, mental health diagnoses risk passing the buck from the responsible party to the vulnerable one, from the perpetrator to victim, in a nearly invisible gesture of gaslighting that is no one person’s fault, but everybody’s problem, because none of us suffer alone.

Here are two snapshots of mental health discourse in action across the years that have caused me to question how we think about diagnosis specifically, and to long for a vastly different lens:

In my early twenties, because I was anxious and struggling to keep up with my university coursework, I visited two psychologists over a span of a couple of years. The first one gave me some paperwork confirming I had “severe” ADHD, so I could submit it to the government and receive a bit of funding towards my education. The second psychologist told me the first one had (in addition to my pre-existing ADHD diagnosis) also diagnosed me with something called Borderline Personality Disorder. The first doctor hadn’t disclosed this, it was simply there in his private notes for the next doctor to discover. But this second fellow insisted I shouldn’t fret, quipping, “Ah, that’s just something psychologists say when they don’t like someone.” Well thanks for being a hero, second doctor, but where does that leave us? My diagnosis is still, “Some dude didn’t like my vibe — BUT some other guy did!” I wish I could say it’s not my problem, it’s theirs. But it is my problem, and it’s everyone else’s problem who has sat in front of such a myopic jury, hoping to receive help, but instead receiving judgement and dismissal.

The second story: When I was in training to become a schoolteacher in 2016, I took a course on learning challenges in the classroom and how to support students through them. One day we were sat in front of a projector showing a list of the symptoms of something called “oppositional defiant disorder” or ODD. Here are some symptoms listed by the NHS for this “disorder”:

The child is stubborn, hostile and often:

• loses their temper and argues with adults,

• defies or refuses to comply with instructions

• annoys people

• blames others for his or her mistakes.

These are not word-for-word the notes I received in teaching school, but they are functionally the same. You may note, as I did, that those criteria in italics are subjective value-judgements, rather than objective observations of behaviour. Our instructor (maybe too casually) added to the description of “ODD” the fact that the majority of the children diagnosed with this “disorder” come from low-income households.

Something struck me in the gut with horror in that moment. These kids are poor. They don’t have enough food, safety, shelter, or support to thrive. What if we considered, as caring adults should, what these children experience every day? How would their apparently hyper-defensive behaviour appear to us then? Would we be forced to come to the conclusion that they might genuinely have something to defend themselves against? Whether it was their parents or their teachers or the government, somewhere along the line, adult-kind, authority, the system, let these kids down. That’s what child poverty is: a failure of adults at large to love children enough to make sure their needs are met. Mistrust and defiance is completely warranted in this scenario, and the result of healthy intuition about one’s place in the world. The nefarious part of this story is when we adults then instruct that child, through diagnosis, to turn their mistrust inward, toward themselves, toward their (implicitly fixed and inborn) “condition.” That betrayal, and the structural oppression it obscures, is the greater disorder by far.

No bad kids: Asking better questions

While in teaching school, I came across a fantastic lens for approaching challenging behaviour in children, which I came to adopt as a lens on humankind in general. The lens is, in short: there are no bad children. There are only children who, for the moment, lack what they need to flourish. Anti-social behaviour can be interpreted in almost every case as the expression of a need for more support, more inclusion. Not without asserting appropriate boundaries, and not without ample support for others they may have harmed, but simply — there are no bad kids. When we really believe that, our discomfort falls right back into our own laps. The well-being of the other becomes our collective responsibility, which cannot be absolved without increasing the application of empathy, and by extension, healthy doses of self-empathy as well.

Truly, what if we start from the assumption that there is nothing wrong with anybody? What if locating the problem inside someone else simply wasn’t an option? What if we simply could not write someone off? What would we do then? What if we took for granted the idea (even just for a moment) that the Earth’s intelligence is complete, and that our highest purpose is to reduce suffering and increase delight? Then the question might shift from “What is wrong” to “What more is needed for flourishing?” Or even, if we’re feeling generous, “What is right with that person?” or “what rightness is sparkling, latent, at the edges of their field?” And then, “how might I invite it out to dance with the rest of us?” Because as Leonard Cohen reminds us all, the cracks are where the light gets in.

Are we looking for the cracks, or for the light?

Of course, it’s easier to start this thought experiment with an innocent child before you leap to the person you find it most difficult to forgive or empathise with, but this mantra has provided me with more empathy over the past nine years or so than I ever imagined would ever flow through me. Perhaps it can serve you too.

Where diagnoses come from

How did we get here? How did it come to pass that there is a huge tome called the The Diagnostic and Statistical Manual of Mental Disorders (DSM) that lists allll the hundreds of ways someone can be “dysfunctional” in their mind? I wouldn’t be surprised if many people reading this are already well aware of this book, and if they could afford to, have sat in front of someone interpreting their state of being through its pages. What sort of people would want to create such a thing? Psychologists, of course! Some of them well-meaning, but all of them influenced by a disenchanted worldview of colonial taxonomical thinking that started with Descartes’ “I think therefore I am,” and really got rolling in the 18th century with Linnean taxonomy, which sought to classify all beings, animal, vegetable, and mineral. The DSM itself came into being in 1949, and until 1980, four years before I was born, it included in its pages “hysteria:” female madness, originally imagined to be caused by a wandering uterus, and addressed by such treatments as regular marital sex, childbirth, and bed rest. If only we could name Everything That’s Wrong perhaps we could control it! the DSM seems to shout. Yet somehow there is more depression and mental illness than ever before in modern indusrialized nations.

How do we know when we are looking at a disorder, condition or disability, that said condition is not a direct result of an imbalance in the culture to which a person belongs (or more crucially, doesn’t belong)? I’m not saying psychologists individually are responsible for the illnesses they diagnose, though there are examples of that. However, it does seem urgent to me to consider how mental health diagnoses fit into the larger picture of cultural values, especially in a society that generally sees the Earth as dead matter, and human beings as individual economic agents competing for survival over units of value like an extremely high-stakes game of Settlers of Catan that ultimately, nobody wins, because it is a nightmare vision of the world.

If our diagnoses hinge in any way on how valued we are as people, on whether or not some doctor (or schoolteacher, or employer, or government) finds us pleasing and worthy of support, or whether we can independently “support ourselves” in a deeply corrupt and exploitative economic system, they will always carry a package of harm along with their help, because our culture’s failure to love us is not something we can fix on our own — not with drugs, not with therapy, nor with ADHD time management coaching. Nor are we responsible for fixing it. This is not the case with all disease, but I can see clearly it is often the case with ADHD, those forms of autism formerly called aspergers,² and many of women’s chronic illnesses. These are, for the most part, socially and environmentally determined illnesses. That doesn’t mean our experience of them isn’t real, or the suffering caused by their “symptoms” doesn’t exist. But the issue I see is that we are identifying a problem, and locating that problem in the inborn nature of certain people, instead of the world that misunderstands or rejects them. And that is never going to lead us in the right direction. It may just be the opposite of medicine.

As long as we live under patriarchal capitalism, my instinct is that a general failure to thrive within it will be the cause and substance of the majority of mental health diagnoses. The question we are asking is basically, “how dare you be born female/poor/brown/weak/needy/wild/sensitive/free?” and not the more crucial, effective and urgent, “how dare we seek to consume, tame and destroy everything tender and sacred in this beautiful world?”

Hildegard Von Bingen’s Vision of the Last Days

Sacred Someone

There was once a man who had a really big-shot job. Everyone loved him. He was at the top of his game and institution: regular speaking gigs, managed hundreds of staff, traveled regularly to consult, even for the competition. But as life went on, he found himself increasingly tortured by intrusive thoughts of demons, and unable to tolerate the company of others. He eventually retreated to a small, wet island off the coast of Northumberland to shiver in a hut, compulsively chant bible verses to himself, and talk to birds and seals until he died there, alone.

What was wrong with him?

He was a saint.

Saint Cuthbert, early medieval bishop of the famous Holy Isle, Lindisfarne, and beacon of the early Celtic church in Britain.

I’m so curious what happens when we step outside of mind-body dualism, zoom out, and consider how spirit factors into human flourishing, (and by extension, what flourishing even means.) Was Cuthbert okay? It seems so. Was he living life on his own terms? Yes. Did he eventually die? Sure. Was he mentally ill? Apparently not.

One of the ways I like to defamiliarize our place in the world is to cast my imaginative eye back to the European Middle Ages, a place where people saw the cosmos much differently than we do now, and kept some pretty decent records of that worldview. Medieval Europe was an enchanted land. Openings to the otherworld were around every corner. Miracles bloomed. Potential saints were born every day. People walked on water. Unicorns roamed the Earth. Don’t worry just now whether they really did or not, the thing is, as far most people understood, they could. It was the same world we live in now. Only they saw it differently.

It’s kind of fascinating to consider the fact that we live in a time when there are more Christians on the Earth than ever before. But somehow, amazingly, fewer and fewer saints. Saint is a latin word deriving from the same root as sacred — sanctus. It refers to someone popularly, or locally, considered holy. If we leave aside the later tendency of the church to limit who (or what) qualified as a saint, and look at the organic phenomenon of the folk saint, there is an amazing possibility glowing behind that door of classification. And it’s not limited to Christianity in the least. Every culture that believes people are or can be holy has and cherishes their exemplary holy people. The more the merrier, really.

A young girl, obsessed with plant lore, prone to hallucinations, spends weeks singing to herself, inventing and speaking her own private languages. Is she autistic? Or is she Saint (f*ck*ng) Hildegard of Bingen?

We could diagnose these people. We could make them like us, bound by a system of classification that aims to reduce the amount of wonder in the world, reduce the amount of wildness, reduce the miraculous, the mysterious, the sacred. Or we could go in the other direction. We could, for a lark, simply look these figures in their human, flawed, beautiful, suffering eyes and say,

Thou art Whole.

Thou art holy.

Thou art holy.

Thou art holy.

And it doesn’t end there. We can do the same for the people we encounter today and tomorrow. One of the features I love about the folk saint phenomenon is that it provides a model for how a person’s strangeness, their otherworldliness, their penchant for talking to animals, their outbursts of weeping, might be interpreted as quite the opposite of a disorder, might be interpreted as the shining of divine light from within.

We could see saints all around us.

Are we available to find out what’s right with them?

You could see the seeds of sanctity in your own strangeness. Your suffering might be a window for the gods, for other human beings, for the future.

Are you available to find out what’s right with you?

All my love,

Danica