Category Archives: Interesting

Mental illness doesn’t make you special

Why do neurodiversity activists claim suffering is beautiful?

BY Freddie deBoer

April 29, 2022

Marianne Eloise wants the world to know that she does not “have a regular brain at all”. That’s her declaration, on the very first page of her new memoir, Obsessive, Intrusive, Magical Thinking. The book catalogues her experience of a dizzying variety of psychiatric conditions: OCD, anxiety, autism, ADHD, alcohol abuse, seasonal affective disorder, an eating disorder, night terrors, depression. By her own telling, Eloise has suffered a great deal from these ailments; I believe her, and wish better for her. But she would prefer we not think of them as ailments at all. And that combination of self-pity and self-aggrandisement is emblematic of our contemporary understanding of mental health.

Eloise is a champion of neurodivergence, an omnibus term that’s recently ballooned in popularity, which can include autism, anxiety, borderline personality disorder, or indeed any other psychiatric condition that’s hot right now. The term is designed for making sweeping pronouncements. Forget the fact that, say, autism and schizophrenia are so different that they have at times been described as opposite conditions. Forget the fact that saying you’re neurodivergent has as much medical meaning as saying you have a disorder of the body. The idea is that there’s a group of people whose brain chemistry differs, in some beautiful way, from some Platonic norm. And it’s an idea that’s taken on great symbolic power in contemporary liberal culture.

There is, for example, a thriving ADHD community on TikTok and Tumblr: people who view their attentional difficulties not as an annoyance to be managed with medical treatment but as an adorable character trait that makes them sharper and more interesting than others around them. (They still demand extra time to take tests, naturally.) It’s also easy to come across social media users who declare how proud they are to be autistic; I’m glad they’re proud, but their repetitive insistencemakes me wonder who exactly they’re trying to convince, us or them.

Darker, there’s the world of “DID TikTok”. DID, dissociative identity disorder, is a profoundly controversial condition, once known as multiple personality disorder. Many serious experts question whether it exists at all; at the very least it’s incredibly rare. And yet thousands of adolescents have diagnosed themselves with the condition, and happily perform their various personalities for their social media followers, typically in ways that defy all established psychological understandings of the disorder.

Against this backdrop, Eloise is a marketing department’s dream come true: hers is a story of the young, beautiful, dysfunctional — and successful. Eloise is the perfect 21st-century woman, from a certain internet-enabled philosophy of human affairs. She is an admirer of witchcraft and believes that women have a mythical connection to water. She does a lot of drugs and becomes bisexual. She uses Tumblr and travels the world, vacationing in Lisbon and the south of France, and moves to Los Angeles to be an actor, taking care to embed that period of her life in a self-defensive patina of irony. She lives an enviable life of obvious socioeconomic privilege, which she does not have time to recognise, as she’s too busy cataloging her psychiatric maladies.

She crams them into every last anecdote: apparently nothing happens to her that she does not ultimately attribute to those maladies. Eloise’s love of swimming as a child is, for instance, laboriously explained in terms of her neurodivergence. I’m talking thousands of words. It seems never to have occurred to her that a love of swimming is not exactly rare among children, or that she doesn’t have to justify her joy at being in the ocean by making it “deeper”. Again and again, she holds perfectly mundane attitudes and behaviours up to the reader and says “Isn’t this special?”

The label of neurodivergence is so vague and capacious, pretty much anything can be pulled into its orbit and made “diverse”. There’s a meme that crops upon Tumblr, TikTok and Twitter that starts with “the neurodivergent urge to…” and is immediately followed by, well, just about anything a person does. Common examples include the neurodivergent urge not to reply to an email or to order food in rather than cooking what’s in the fridge.

Take Eloise’s nightmares. She has, at times in her life, suffered from debilitatingly bad dreams that made sleep a constant source of fear and pain. This sounds like an awful condition, and she deserves sympathy. But she gives the game away when she writes: “Maybe my relationship with dreaming wasn’t like everyone else’s.” Not like everyone else’s, no. But certainly like that of many people who suffer from recurring and terrifying nightmares. Eloise writes that, according to the Mayo Clinic, nightmare disorder “only affects around 4-5% of adults, which shocked me: did adults really not have nightmares?” It’s as if she genuinely does not know the difference between 4% and zero.

It is perhaps comforting to see every last detail of one’s life as the product of some uncontrollable force. “I am this way because I was born this way,” Eloise writes, in a remarkably bald denial of personal responsibility. As a pawn of the various interior forces that do combat in her brain, she is adamant that there is nothing wrong with her, that her suffering is all in service to some deeper way to live, and that she is proud of the very conditions she asks us to treat as a perpetual get-out-of-jail-free card for her behaviour.

The implication is that the neurodivergent might just be better than other people. As with introverts, social media users have developed a discourse around neurodivergence that is nakedly self-celebratory, a bragger’s genre. Eloise has clearly endured a great deal of hardship, but like her culture she seems to feel that this hardship can only be given meaning by being woven into a journey of self-actualisation. Eloise writes that her life is “underpinned and ultimately made whole by obsession”. Can you imagine a sadder statement: an adult telling you that there is nothing to distinguish her or give her value but her psychiatric conditions, conditions she shares with millions of others?

Diagnosis is the Holy Grail of the neurodivergence narrative. Eloise fixates on hers and its quasi-mystical powers. No reader could doubt that her problems are real, but she seems to have treated getting diagnoses like a consumer on Amazon. She states flat out, on several occasions, that she went shopping for an autism diagnosis, went to doctors with the express intent of wringing one out of them. There was a time when self-diagnosis was understood to be unhealthy, and perhaps embarrassing, but this is a brave new world we’re living in now.

Once enough people insist on mental illnesses as upbeat and fashionable lifestyle brands, then any of us who oppose it are guilty of the most grave sin of all, the sin of perpetuating stigma. It’s stigma to call autism a disorder, despite the fact that it renders some completely nonverbal and unable to care for themselves; it’s stigma to suggest that someone with ADHD bears any responsibility at all for problems at school or work; it’s stigma to speak the plain fact that people with psychotic disorders sometimes commit acts of violence under the influence of their conditions. It’s stigma, in other words, to treat those of us with mental illnesses as anything else than wayward children.

Stigma, that cartoon monster, has never been in the top 100 of my problems in 20 years of managing a psychotic disorder, but never mind; stigma is the ox to be gored in contemporary pop culture, and so we must fixate on it to the point that we sideline the health, safety and treatment of those with mental disorders.

What I find tragic about those who buy into the neurodivergence narrative is that they become their illnesses. And yes, there are alternatives. Eloise and people like her seem never to consider one of the possible ways that they could have dealt with their myriad disorders: to suffer. Only to suffer. To suffer, and to feel no pressure to make suffering an identity, to not feel compelled to wrap suffering up in an Instagram-friendly manner. To accept that there is no sense in which her pain makes her deeper or more real or more beautiful than others, that in fact the pain of mental illness reliably makes us more selfish, more self-pitying, more destructive, and more pathetic. To understand that and to accept it and to quietly go about life trying to maintain peace and dignity is, I think, the best possible path for those with mental illness to walk.

But in this culture, all must be monetised, all must be aspirational, anything can be marketed. Eloise lacks the self-awareness to ask whether there’s something exploitative and ugly about turning psychological illness into fodder for soap opera and motivational posters. Again and again in this book, Eloise gins up the kind of statement on mental health that you might find in an Instagram meme, wedges it awkwardly into some prosaic story about her youth, and then skips away. At one point she mocks “Airbnb-style Live Laugh Love signage”, and I could only think, you’re writing a book filled with it.

The most real, most human, most honest, and most humane part of Eloise’s book is something she wrote in a journal in 2009, when she was a teenager:

I fear my mind, as one single assembly by one fireman on fire safety in primary school caused this deep-seated fear. That shows the true extent of my mind’s power over me. Although these things are unlikely to happen, just yet, I fear every one of them one day. I don’t need a doctor to tell me that is a problem. But I want, so badly, to get better.

This is what it’s actually like to have a mental illness: no desire to justify or celebrate or honor the disease, only the desire to be rid of it. But the modern conception of neurodivergence (and disability activism generally) wants to have it both ways. Sometimes, people would prefer for you to think of their conditions as debilitating hindrances for which they may demand special dispensation. And sometimes they would like them to be seen as positive personality quirks that make them unique.

It is hard to witness the damage that has been done to this young woman, by a culture that insists she views her suffering as part of a beautiful journey. Today’s activists never seem to consider that there is something between terrible stigma and witless celebration, that we are not in fact bound to either ignore mental illness or treat it as an identity.

Were we wiser and more serious, we might be able to see psychiatric disorders as both natural and lamentable, as beyond the control of the individual but still within their responsibility. We would have sympathy for those who suffer from them, but recognise that sympathy only accrues to those whose conditions are unfortunate, unhealthy. We might be honest and say that, yes, it’s bad to be afflicted with psychiatric disorders.

We might, then, have the courage to say that mental illness sucks, that there’s nothing good about it, that the efforts to bend it into some superpower of greater creativity or deeper living is sour grapes from those who can’t escape. We might help people like Eloise, rather than celebrating them as self-actualised girlbosses. We might have the wisdom to ease her suffering, while we patiently tell her that there’s nothing beautiful about it.

https://unherd.com/2022/04/mental-illness-doesnt-make-you-special/?tl_inbound=1&tl_groups[0]=18743&tl_period_type=3&mc_cid=88153fe9cb&mc_eid=0ff3e7ea29

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About – Caitlin Johnstone

Somehow I landed on this blog. Interesting. I appreciate the “free” effort they give. (Caitlin and Tim, her husband). I would refer her to something I recently posted: The problem with the world, and with people, and with politics and with economics, is found in the Old Testament. Humans are fallen, and as such, our falleness affects all our efforts. Humans cannot create their own “salvation”. Humans cannot re-create “The Garden of Eden”, as much as they have tried since… well, since Eden. mrossol

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‘I’ve always been plagued by a sense that I was a little out of whack’

I don’t necessarily agree with Hannah Gadsby on everything- probably not on much -but I appreciate her putting her experience with autism out there. I have much to learn about the condition. mrossol

The Gardian, 3/19/2022, by Hannah Gadsby

You don’t have to be an expert to know that people with autism don’t get to speak about their own experiences. Until very recently, autism has largely only been understood through the prism of the experience of parents and as a list of observations that mostly neurotypical medical professionals have made and assigned meaning to.

The myths around ASD (autism spectrum disorder) have wasted enough of my life, so I don’t really want to waste any more of my time thinking about them, much less writing them down. But as the myths are so firmly embedded into popular (mis)understanding, I don’t have the luxury to skip over them, so it is just a sad reality that I have to waste even more of my time to bring many of you up to speed.

 

For a long time, I worried that I’d been misdiagnosed. It was difficult to believe that I wasn’t entirely to blame for my life being such a painful struggle, because I was so used to assuming I was a bad person. It took me a long time to get brave enough to simply share my diagnosis. My experience did not match the popular understanding of autism, and I knew I had to become an expert in neurobiology in order to untangle the myriad myths surrounding autism – just to beg permission to claim that piece of my identity.

I was right to be cautious, because when I finally did start telling the world of my diagnosis, the dismissals came thick and fast. I was told I was too fat to be autistic. I was told I was too social to be autistic. I was told I was too empathic to be autistic. I was told I was too female to be autistic. I was told I wasn’t autistic enough to be autistic. Nobody who refused me my diagnosis ever considered how painful it might have been for me, and it got really boring really fast.

Ever since I can remember, my thoughts have been plagued by a sense that I was a little out of whack, as if belonging was beyond me. To give this feeling a story, it’s as if I am an alien who has been abandoned on Earth and left to muddle my way through life, without a reason, a mission, or any memory of home. If you are a conspiracy theorist, this is where you begin to wonder if I might perhaps be a lizard. I am not.

Portrait of Hannah Gadsby

I am a visual thinker. I see my thoughts, but I don’t have a photographic memory, nor is my head a static gallery of sensibly collected thoughts that my brain curates into easy sense. It is not linear. It is fluid and flexible, kind of like a private Wikipedia that I am constantly revising and editing, but instead of words, everything is written in my own ever-evolving language of hieroglyphic films filled with hyperlinks to associated and often irrelevant thoughts. I have never managed to develop a reliable system to file and separate my thoughts into individual think pieces, and so I am utterly incapable of having one thought without at least another hundred coming along for the ride.

Further complicating this issue is the fact that my brain doesn’t work in the realm of the abstract. I’m not capable of thinking with imagery that I haven’t seen with my own eyes, which means that when someone tells me a story, I will see it as something like a film that I must edit together out of all the other films sourced from my own internalised collection. Every single day I have spent on this Earth, I have added countless images to my brain library. Needless to say, it is very busy in my head. If it were possible for someone to catch a glimpse of my thoughts being processed, they’d be hard-pressed to make sense out it. I doubt they’d even believe that the tornado orgy of wingdings and gifs was anything other than gibberish.

Sadly, the enthusiasm that my brain brings to the collecting of visual records is not then applied to the filing and retrieval process. And because of my inability to quickly and efficiently translate what I see into an externally communicable format, I am wired to have lots of fun and adventure in my head while at the same time failing totally, utterly and miserably at life on the outside, and feeling profoundly alone.

I believe that it is this whirl inside my brain that contributes to my occasional inability to speak. To be clear, I don’t identify as being nonverbal, but I often lose my verbal ability. Especially if I am overwhelmed by a lot of sensory information at the same time as I am trying to identify, process and regulate emotional distress. This is what is called selective mutism, which commonly exists alongside ASD, but is not exclusive to it.

When I told Mum I was autistic, she said: “Yeah, that makes sense. I always knew there was a lot going on inside you, but I just couldn’t get in. You were like a tin of baked beans and my tin opener wouldn’t work on you.” It’s a tidy metaphor, especially if you know that Mum does not like baked beans.

My childhood was a serendipitously effective buffer for the worst that my ASD threw at me. Small town. Not a lot of change. My family unit was a ready-made social network that I didn’t have to navigate cold because I was just a part of it. They looked out for me, but, because we were a big family, no one really noticed if I didn’t talk. I was the youngest, so no one expected me to be a leader. No one noticed when I would disappear for hours, and no one thought much of my habit of taking frequent naps in the linen press. I wasn’t quirky, I was just Hannah. Nobody thought I was special when I memorised every single question and answer in Trivial Pursuit. Because I wasn’t special; everyone cheated one way or another. It was only when I stepped out of the bubble of my family that things went to shit. And, gosh, to shit they went.


I struggled to grasp even the most basic of life’s skills. In my first year of primary school, I forgot to wear underpants so many times that my family started to check me at the door every morning before I left. I assumed I’d get better at stuff as I got older, but it only got worse. And the older I got, the less amused people were by me.

During my adolescence I began to find it more and more difficult to make myself understood, and that is when I developed an instinctive habit of taking the blame whenever I didn’t understand what was going on around me – which, to be clear, was all the time. This struggle persuaded me to assume that I was unlikable, and eventually I stopped thinking about the world through the lens of my own needs. And anybody who is a human knows that this is not a recipe for good times.

Portrait of Hannah Gadsby looking sceptical

I used to fret about fitting in at school, not because I wanted to, but because I knew I was supposed to. I was at my happiest in my own company, which I took to be an abnormality. It never occurred to me that it could be the epitome of normal behaviour – for me. I was a “girl”, and girls were expected to be masters of the mingle, so I tried really hard to be normal, but it was a fool’s errand because my neurobiological situation makes it hard for me to “see” all the networks of undercurrent connections that drive the interactions of the more typical thinkers, which in turn makes it incredibly difficult for me to intuitively reflect peer group behaviours. So the best I could do, and continue to do, is observe, guesstimate and imitate, which is often referred to as “masking” in autistic circles. As a coping mechanism for teenage me, masking was an incredibly successful tactic – I was only bullied intermittently during my school years – but as a catalyst for growth, it worked more like castration.

By the time I was middling my 30s, I was no longer living my life. I was merely coping with it, and barely. I felt as if I was a supreme annoyance and a burden to anybody I spent meaningful time with. But nobody seemed to notice that I had major depressive episodes every other year, and debilitating anxiety the rest of the time. Not even me. Nobody noticed that I never made eye contact. Nobody noticed that I often spoke in a patchwork of collected phrases. It took me a long time to even spot those patterns of my own behaviour, because I was too busy trying not to do the wrong thing by guessing, pretending, panicking, then either shutting or melting down.


My meltdowns had always been a mystery to me, so when I was finally diagnosed, I was able to reframe the way I thought about my strange little outbursts. For a start, I became far more compassionate toward myself, which probably halved the distress of the occasions. In the scheme of my life, I have not had very many meltdowns, however. I’m more of a shutdown kind of autistic. From the outside, a shutdown looks very similar to a sulky tantrum, but it is nothing of the sort. I don’t have control, for a start. And I am certainly not ruminating on any kind of emotional narrative, because I have gone into fight or flight, but in my body that translates into neither fight nor flight; I just shut down like a maxed-out power grid in the middle of a storm.

Meltdowns are equally distressing, but for different reasons. The worst is knowing that I am out of control, and may accidentally injure myself or, worse, someone else. Meltdowns are often conflated with panic attacks, but they are not the same beast. The biggest difference between them is that a panic attack is agitation and fear, spinning on a kind of mind loop, whereas a meltdown is a maelstrom that begins in the body. Another important difference is that a panic attack will never resolve the anxieties that triggered it. Meltdowns, on the other hand, are a real spring clean. They clear the pipes and can often leave you feeling as if your body has been reset.

I wish more than anything that I had known about my ASD when I was a kid, just so I could have learned how to look after my own distress, instead of assuming my pain was normal and deserved. There is no one to blame, but I still grieve for the quality of life I lost because I didn’t have this key piece to my human puzzle. But until someone unlocks the riddle of time travel, little me will have to flail and fail their way through the world for 30-odd years.

I see a fault in the idea, put forward by neurotypical “experts”, that autistic people have mind blindness, which essentially suggests we are unable to understand the inner workings of other people. I believe we all have mind blindness; why else would we invent language? The only way to see another person’s mind is to find a way to be able to hear what they have to say.

Portrait of Hannah Gadsby with her face screwed up

The problem is that communication skills are developed atypically in autistic people and, most often, very slowly. I have always had difficulty articulating my needs, but as I have got older, my language and social skills have improved a great deal. My ability to regulate, however, has not, and nor have my sensory sensitivities. My eternal struggle with these distressing disabilities often gives the impression to others that I am moody, reactive and inconsistent. I say I want one thing, then moments later I will say that I need the opposite. This is not a reflection of my character, but rather a reflection of my neurobiological functioning. I am unable to intuitively understand what I am feeling, and I can often take a much longer time to process the effects of external circumstances than neurotypical thinkers. But it is they who get impatient with me, and under that pressure I feel forced to guess my needs before I have had time to process stuff in my own way, and so mistakes are made. I can be cold and not know it. I can be hungry and not know it. I can need to go to the bathroom and not know it. I can be sad and not know it. I can feel distressed and not know it. I can be unsafe and not know it. You know how sometimes you put your hand under running water and for a brief moment you don’t know if it is hot or cold? That is every minute of my life. Being perpetually potentially unsafe is a great recipe for anxiety. And – spoiler alert – anxiety is bad.

Once I understood that I was always going to have difficulty with self-regulation, I stopped worrying about it. Once I am distressed, my moods are not mine to control, but my environment is. I am always working to remove myself from all the cycles and patterns of hostile environments. I no longer search my behaviours exclusively for revelations about my character; I use my occasions of distress as ways to map the circumstances and environments I move through, and look for ways I can reduce my exposure to distressing situations. I have learned how to advocate for my own experiences instead of being ashamed of my pain and confusion. I stopped worrying about what I was expected to do, and worked on building an understanding of what I could do to make myself feel safe and calm.

I am not afraid of pressing pause during a television show when I feel distressed. I seek out spoiler alerts to avoid getting panicked by unexpected plot twists. I leave crowded spaces. I switch off discordant music. I wear headphones at restaurants. I openly express my hatred of the saxophone and electric guitar solos. I don’t allow important emotional conversations to take place in cafes with polished concrete floors.

I spend hours alone at home rearranging my little piles of bric-a-brac, because it’s really fun. I only wear blue clothes because blue makes me feel calm. I listen to the same music, watch the same shows, and eat the same foods over and over again without any qualms. I find joy in my life where once I couldn’t because I was too busy trying to do the “right” thing instead of checking in with my own needs first.

I am lucky. I have the privilege to be able to protect myself – now. But it’s not because I can do it on my own. I need help. There is not much about my life that is not looked after by another human, sometimes teams of them. That’s the beauty of success in show business: other people become quite keen to do all the things for you. I am basically a middle-class white man from the 1950s.

 
‘Now everyone wants a piece of the Gads’ … Hannah Gadsby in Melbourne, Australia.
‘I broke the contract’: how Hannah Gadsby’s trauma transformed comedy

But even if I hadn’t stumbled into success, I would still need a lot of help just to navigate life. It is absolute bullshit that the only way I could access the help I needed was by accidentally activating some kind of exceptional potential I didn’t even know I had until I was nearly 30 years old. Please stop expecting people with autism to be exceptional. It is a basic human right to have average abilities.

Most people who struggle to find stable employment also contend with things like intergenerational poverty and/or trauma, cycles of abuse, mental illness, systemic discrimination, disability or neurological disorders. Not only are these all chronically stressful and traumatic circumstances, they have all been linked to a high incidence of impaired executive function. Welfare systems are not built to be easy for people who are anxious about using the phone, or people who mix up dates. They are not designed for people who are bad at keeping time, filling out forms, or people who can’t easily access all the relevant bank, residential and employment details from the past five years, if they thought to keep that information at all. Welfare systems don’t accommodate transience because welfare systems are not built to be accessible, they are built to be temples of administrative doom, because, apparently, welfare is a treasure that must be protected. Can somebody please do something about that? I am not good enough at organising to be an actual activist. But searching for the connections between the big picture and the little picture is a very ASD thing to do. I am never not cross-referencing the trees with the forests, and it can be a very exhausting way to engage – but I wouldn’t change it for the world, because I believe communities need thinkers like me.

https://www.theguardian.com/stage/2022/mar/19/hannah-gadsby-autism-diagnosis-little-out-of-whack?utm_source=pocket-newtab

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