if you’re different on any axis you’ve got a slight edge
September 1, 2017 12:15 PM Subscribe
Biologist George Church talks about his narcolepsy and the benefits of neurodiversity He is thinking more and more about the huge, and healthy, variation in how human brains function. The neurodiversity movement argues that brains that differ from the norm are not necessarily disordered and in need of treatment.
He hasn’t tried any of the drugs typically prescribed to treat narcolepsy. Stimulants help patients work harder but seem to reduce creativity. “I decided I already work hard enough, and creativity is everything for me,” Church said.
This is certainly an idea we dance around with our youngest. He's ADHD, with hints that there's something else going on that we're working with a neurologist to figure out. He's bright in some ways, making leaps to what we know to be the right answer when we can't figure out he could possibly do so, and managing it often enough and with enough confidence that we're reasonably sure it's not just confirmation bias on our part. He's also an endless fount of creativity.
When he was unmedicated, he was unfocussed, yes, but also out of control, very disruptive, often fleeing the classroom or playground, and he didn't seem to be able to learn new things except in that wild flash of insight way, which wasn't reliable.
And so we've experimented with various medications. One gave him focus and control, but also tics (a known, rare side effect). Another gave him focus, control, and self-confidence...and eventually suicidal ideation, utterly terrifying to see in a nine-year old (again, a known, rare side effect--he seems to lose at the side effect lottery). His current medication gives him control, but no focus, but combining it with another one to try to fix that led to an explosive temper...and when he realized we were thinking it was related, he seized on it as an excuse for losing his temper which really didn't help.
We've tried finding alternate forms of schooling, but nothing's seemed right, so now we're back to accepting the control-but-no-focus so that he can at least go to school at all. But every time we give him his pill, we wonder if we're stifling something of what makes him unique in an effort to help him get through this life at all.
posted by Four Ds at 2:06 PM on September 1, 2017 [4 favorites]
When he was unmedicated, he was unfocussed, yes, but also out of control, very disruptive, often fleeing the classroom or playground, and he didn't seem to be able to learn new things except in that wild flash of insight way, which wasn't reliable.
And so we've experimented with various medications. One gave him focus and control, but also tics (a known, rare side effect). Another gave him focus, control, and self-confidence...and eventually suicidal ideation, utterly terrifying to see in a nine-year old (again, a known, rare side effect--he seems to lose at the side effect lottery). His current medication gives him control, but no focus, but combining it with another one to try to fix that led to an explosive temper...and when he realized we were thinking it was related, he seized on it as an excuse for losing his temper which really didn't help.
We've tried finding alternate forms of schooling, but nothing's seemed right, so now we're back to accepting the control-but-no-focus so that he can at least go to school at all. But every time we give him his pill, we wonder if we're stifling something of what makes him unique in an effort to help him get through this life at all.
posted by Four Ds at 2:06 PM on September 1, 2017 [4 favorites]
I had a discussion with a young person with self-described Asperger's on Reddit last year about neurodiversity. My point was that there's an awful lot of kids with severer cases of autism who really will not thrive at all unless docs/parents/therapists intervene on the more harmful parts of their behaviors. When they understood how bad it can be, they understood why treatment is sometimes necessary.
Not everyone with narcolepsy, for instance, can afford to stop driving. Not everyone with narcolepsy has the sort of workplace that will or can accommodate their disorder. It's great Dr Church can function well without treatment, but not everybody with narcolepsy can.
Neuro and psych stuff—there's always a trade-off between treatment and symptoms. If you don't consider them symptoms, then they're not symptoms. (Complexities arise when someone is clearly worse off from their symptoms but lack insight.) If the adverse effects of treatment are worse than the symptoms, then you stop treatment.
It seems to me these things always miss the point. Or maybe I only read the things that miss the point because the things that fail to miss the point aren't so splashy.
posted by adoarns at 2:38 PM on September 1, 2017 [4 favorites]
Not everyone with narcolepsy, for instance, can afford to stop driving. Not everyone with narcolepsy has the sort of workplace that will or can accommodate their disorder. It's great Dr Church can function well without treatment, but not everybody with narcolepsy can.
Neuro and psych stuff—there's always a trade-off between treatment and symptoms. If you don't consider them symptoms, then they're not symptoms. (Complexities arise when someone is clearly worse off from their symptoms but lack insight.) If the adverse effects of treatment are worse than the symptoms, then you stop treatment.
It seems to me these things always miss the point. Or maybe I only read the things that miss the point because the things that fail to miss the point aren't so splashy.
posted by adoarns at 2:38 PM on September 1, 2017 [4 favorites]
adorarns, I actually think you might be the one who's missing the point. I'm assuming from your phrasing that you're neurotypical? As a mostly-secret, externally "high functioning" -seeming autistic woman, let me tell you some things.
How I got to this level of function, and perfected my ability to camouflage myself, was psychological torture. Some was done to me by others, like you, in a well-intentioned effort to make me acceptable/normal to them (and functional in a world that makes no place for me). Some I did to myself in an effort to cope with the trauma / stop the torture.
Part of my internal process involved systematically killing/cutting off the parts of my brain that did the smart things, so living in camouflage would be less painful. As a child/teen I was inhumanly good at math, it felt like it came from... outside of me. Like visions, or something. But there was nowhere for me to go with that, no place it would be valued. And it was so depressing to have it inside of me and not use it. So I killed it, thoroughly. By the time I was 25 I was unable to do even basic restaurant-bill math in my head, and was made fun of by my friends for being a typical girl who's bad at math.
I don't know if I could ever get those math abilities back, if I tried. And it was the best high, the best feeling. Whereas, interacting socially in a neurotypical way has always been, and is still today, difficult, stressful, exhausting, futile. I CAN do it, yes. But I'm not sure the tradeoff was the right one.
Besides, I can't keep a job, still. I have a bucketload of sensory & executive functioning issues, which were ignored bc they weren't externally visible, didn't make people uncomfortable. All my remaining brainpower goes to offsetting that stuff. And even though I'm camouflaged enough so that NT's can't clock me, I feel like I make them vaguely unsettled, I think? I still struggle with figuring out what I did wrong when I make enemies. And socializing with NT's still makes me exhausted enough that a 40 hour work-week means I'm always on the verge of collapse.
So, anyway, think about what you're asking when you ask neuro-divergent people to change to fit the world, rather than asking the world to make space for them.
(Sidenote for grammaticasters: I know there are a million comma splices but I don't feel like fixin em.)
posted by it's FuriOsa, not FurioSA at 3:27 PM on September 1, 2017 [22 favorites]
How I got to this level of function, and perfected my ability to camouflage myself, was psychological torture. Some was done to me by others, like you, in a well-intentioned effort to make me acceptable/normal to them (and functional in a world that makes no place for me). Some I did to myself in an effort to cope with the trauma / stop the torture.
Part of my internal process involved systematically killing/cutting off the parts of my brain that did the smart things, so living in camouflage would be less painful. As a child/teen I was inhumanly good at math, it felt like it came from... outside of me. Like visions, or something. But there was nowhere for me to go with that, no place it would be valued. And it was so depressing to have it inside of me and not use it. So I killed it, thoroughly. By the time I was 25 I was unable to do even basic restaurant-bill math in my head, and was made fun of by my friends for being a typical girl who's bad at math.
I don't know if I could ever get those math abilities back, if I tried. And it was the best high, the best feeling. Whereas, interacting socially in a neurotypical way has always been, and is still today, difficult, stressful, exhausting, futile. I CAN do it, yes. But I'm not sure the tradeoff was the right one.
Besides, I can't keep a job, still. I have a bucketload of sensory & executive functioning issues, which were ignored bc they weren't externally visible, didn't make people uncomfortable. All my remaining brainpower goes to offsetting that stuff. And even though I'm camouflaged enough so that NT's can't clock me, I feel like I make them vaguely unsettled, I think? I still struggle with figuring out what I did wrong when I make enemies. And socializing with NT's still makes me exhausted enough that a 40 hour work-week means I'm always on the verge of collapse.
So, anyway, think about what you're asking when you ask neuro-divergent people to change to fit the world, rather than asking the world to make space for them.
(Sidenote for grammaticasters: I know there are a million comma splices but I don't feel like fixin em.)
posted by it's FuriOsa, not FurioSA at 3:27 PM on September 1, 2017 [22 favorites]
I liked the parts of the article where it talks about narcolepsy and his experiences with it. But I think it's a mistake to make the leap that because his neurological oddities are beneficial, that other ones must be as well. E.g., "Church suspects society could benefit from more neurodiversity, not less, which is what happens when people take medications to make their brains less OCD, less ADHD, or less autistic."
Fuck that. As someone who has struggled, and still struggles, with crippling OCD, and is aware every day of how much it distracts me, exhausts me, and has limited my life in just about every way possible, and who is only even functional because of high doses of Zoloft: fuck this sentiment. And fuck Church for saying it, fuck the author who decided to publish that idea, and fuck anyone else who ever suggests that I would somehow be better off if I were unmedicated. Obsessive-compulsive disorder IS a disorder. It doesn't make me more creative or interesting or intelligent; it stifles any of those qualities I already had, and I am always aware of how much more I could be doing with my life if I didn't have to deal with my brain constantly telling me that someone I love is going to die because I folded my socks wrong, or that I'm going to get some horrible wasting disease because I used a public bathroom, or that there's some kind of invisible parasite in my guts RIGHT NOW eating me alive, or or or or... Medication is the only thing that takes the edge off of the OCD enough for me to deal with it. I wouldn't be somehow more productive or beneficial to society without it, I'd probably be dead.
posted by Meow Face at 4:24 PM on September 1, 2017 [20 favorites]
Fuck that. As someone who has struggled, and still struggles, with crippling OCD, and is aware every day of how much it distracts me, exhausts me, and has limited my life in just about every way possible, and who is only even functional because of high doses of Zoloft: fuck this sentiment. And fuck Church for saying it, fuck the author who decided to publish that idea, and fuck anyone else who ever suggests that I would somehow be better off if I were unmedicated. Obsessive-compulsive disorder IS a disorder. It doesn't make me more creative or interesting or intelligent; it stifles any of those qualities I already had, and I am always aware of how much more I could be doing with my life if I didn't have to deal with my brain constantly telling me that someone I love is going to die because I folded my socks wrong, or that I'm going to get some horrible wasting disease because I used a public bathroom, or that there's some kind of invisible parasite in my guts RIGHT NOW eating me alive, or or or or... Medication is the only thing that takes the edge off of the OCD enough for me to deal with it. I wouldn't be somehow more productive or beneficial to society without it, I'd probably be dead.
posted by Meow Face at 4:24 PM on September 1, 2017 [20 favorites]
I'm inclined to stand with Meow Face and adoarns on this. The "don't take meds, they kill your creativity and diversity" perspective is a very very privileged one. I am very hesitant to endorse a "normalcy" standard, but I think there is a balance, sometimes a very fine balance, between medications helping you achieve what you need/want to, and achieving what Society needs/wants from you. People I know with schizophrenia and bipolar disorder tell me that before meds, they would have all these amazing ideas/thoughts but no way to channel that energy. On the flipside, there is such a long and ugly history (and present!) of policing what is "acceptable behavior," often harming the individual person in the service of the Greater Good (TM).
It sounds like George Church has found a non-pharmacologic treatment (standing, not eating) that allows him to achieve what he wants AND what Society wants. That's awesome! But as a scientist, he of all people should know that his n=1 study (or n=2 if you count his daughter) doesn't generalize.
Also, I am really turned off when he refers to people as their diagnosis. "We need more autistics and OCDs"? Way to be reductionist, man.
posted by basalganglia at 5:13 PM on September 1, 2017 [5 favorites]
It sounds like George Church has found a non-pharmacologic treatment (standing, not eating) that allows him to achieve what he wants AND what Society wants. That's awesome! But as a scientist, he of all people should know that his n=1 study (or n=2 if you count his daughter) doesn't generalize.
Also, I am really turned off when he refers to people as their diagnosis. "We need more autistics and OCDs"? Way to be reductionist, man.
posted by basalganglia at 5:13 PM on September 1, 2017 [5 favorites]
Fuck that. As someone who has struggled, and still struggles, with crippling OCD, and is aware every day of how much it distracts me, exhausts me, and has limited my life in just about every way possible, and who is only even functional because of high doses of Zoloft: fuck this sentiment. And fuck Church for saying it, fuck the author who decided to publish that idea, and fuck anyone else who ever suggests that I would somehow be better off if I were unmedicated.
I had a really bad day and might not be up to a full essay-length rundown of my thoughts w.r.t. my experiences with ADHD today. But they would be basically exactly all this.
posted by traveler_ at 5:31 PM on September 1, 2017 [8 favorites]
I had a really bad day and might not be up to a full essay-length rundown of my thoughts w.r.t. my experiences with ADHD today. But they would be basically exactly all this.
posted by traveler_ at 5:31 PM on September 1, 2017 [8 favorites]
Stimulants such as modafinil help patients work harder but seem to reduce creativity (his daughter reported). “I decided I already work hard enough, and creativity is everything for me,” Church said.
Wooooow. This is such a...what a weird position for a scientist to take? "Oh, I have all of my good ideas right after I have an episode, and it's definitely causation, so I'm not treating this thing, plus my daughter reported one side effect I wouldn't like which means no drugs would work anyway, and besides, my quality of life is great as long as I don't eat or sit down. I even slept on a red-eye once!" Gosh, why don't more of us weirdos join him on the radical acceptance tip...?
posted by Snarl Furillo at 5:32 PM on September 1, 2017 [6 favorites]
Wooooow. This is such a...what a weird position for a scientist to take? "Oh, I have all of my good ideas right after I have an episode, and it's definitely causation, so I'm not treating this thing, plus my daughter reported one side effect I wouldn't like which means no drugs would work anyway, and besides, my quality of life is great as long as I don't eat or sit down. I even slept on a red-eye once!" Gosh, why don't more of us weirdos join him on the radical acceptance tip...?
posted by Snarl Furillo at 5:32 PM on September 1, 2017 [6 favorites]
"My guess is we need more high-functioning autistics or more OCDs, especially if they can tweak it a little bit, [saying,] ‘Now I need to be sociable so let’s turn [the brain’s autistic traits] down a bit,’ or, ‘Now I’m going to have 12 hours uninterrupted [for focusing on a challenging problem] so let’s crank it full on.’”
"We need more people who have a condition that I superficially understand to mean that they will be good at computer programming and copy-editing." Dude somehow picked up engineer's disease all the way from the biology department.
posted by Snarl Furillo at 5:37 PM on September 1, 2017 [11 favorites]
"We need more people who have a condition that I superficially understand to mean that they will be good at computer programming and copy-editing." Dude somehow picked up engineer's disease all the way from the biology department.
posted by Snarl Furillo at 5:37 PM on September 1, 2017 [11 favorites]
"Church suspects society could benefit from more neurodiversity, not less, which is what happens when people take medications to make their brains less OCD, less ADHD, or less autistic."
Wow, that's grossly offensive. There is no drug that will make me "less autistic". Addressing the symptoms that cause problems (sensory sensitivities, etc.) doesn't make me "less autistic".
And yet he's so close. It's not medication that makes people "less autistic", by which I think he means "able to interact with allistics more easily", it's education to help allistic people be better in their interactions with autistic people.
Relatedly, the paper "Toward a Behavior of Reciprocity" by Morton Ann Gernsbacher is worth reading. Summary, thanks to Real Social Skills:
Wow, that's grossly offensive. There is no drug that will make me "less autistic". Addressing the symptoms that cause problems (sensory sensitivities, etc.) doesn't make me "less autistic".
And yet he's so close. It's not medication that makes people "less autistic", by which I think he means "able to interact with allistics more easily", it's education to help allistic people be better in their interactions with autistic people.
Relatedly, the paper "Toward a Behavior of Reciprocity" by Morton Ann Gernsbacher is worth reading. Summary, thanks to Real Social Skills:
teaching nonautistic children social skills improves autistic children’s social skills better than teaching autistic children social skills.posted by Lexica at 6:13 PM on September 1, 2017 [5 favorites]
This is a bad article to introduce the concept of neurodiversity, because the author doesn't seem to understand what neurodiversity and the neurodiversity movement is about, and is incorrectly applying it to George Church's attitude. His attitude is in fact pretty contrary to the neurodiversity movement because:
1) Neurodiversity is not about saying that there are not often significant negatives to a brain structured different from the norm, rather that having such a brain structure does not make one inferior to anyone else.
2) The neurodiversity movement says that every single person's brain structure has negatives and positives to it, and that the negatives/positives of someone with x condition are not necessarily worse than that of someone with out, just different. Example: I have ADHD, which means I forget everything constantly (negative), but also means that sometimes I hyperfocus and read a 200 page autiobiography and write 12 single spaced pages on it in one afternoon (positive, literally happened, it wasn't even due the next day or anything I just got super into it). Someone with out ADHD has the benefit of remembering basic shit, but doesn't hyperfocus as easily as someone with ADHD. Positives and negatives.
3) It's up to the individual to decide what positives (if any) or negatives (if any) there are to their brain structure, and how to balance them. Things that cause you stress, harm, or generally impede your life that are not just the result of people being assholes (e.g.: people mistreat me for stimming, but stimming is not actively harmful to me or anyone else, people are just being assholes) should still be addressed, whether through therapy, medication, meditation, whatever works best for you.
Anyway, that aside: you can't just fuckin. "Turn up" and "turn down" your autism/OCD/ADHD holy shit like. The only way you can do that (for ADHD and OCD at least, not really a thing w/autism) is by FUCKING TAKING MEDICATION JESUS CHRIST
Also the "medication makes you less creative" romanticization of allowing mentally il people to suffer in the name of art needs to stop. Like first of all where is the research saying this, and second of all I would rather a brilliant artist never make art and live a long, happy, and fulfilling life, than have them paint ten beautiful paintings in misery and kill themselves at 24, sorry
posted by brook horse at 6:13 PM on September 1, 2017 [12 favorites]
1) Neurodiversity is not about saying that there are not often significant negatives to a brain structured different from the norm, rather that having such a brain structure does not make one inferior to anyone else.
2) The neurodiversity movement says that every single person's brain structure has negatives and positives to it, and that the negatives/positives of someone with x condition are not necessarily worse than that of someone with out, just different. Example: I have ADHD, which means I forget everything constantly (negative), but also means that sometimes I hyperfocus and read a 200 page autiobiography and write 12 single spaced pages on it in one afternoon (positive, literally happened, it wasn't even due the next day or anything I just got super into it). Someone with out ADHD has the benefit of remembering basic shit, but doesn't hyperfocus as easily as someone with ADHD. Positives and negatives.
3) It's up to the individual to decide what positives (if any) or negatives (if any) there are to their brain structure, and how to balance them. Things that cause you stress, harm, or generally impede your life that are not just the result of people being assholes (e.g.: people mistreat me for stimming, but stimming is not actively harmful to me or anyone else, people are just being assholes) should still be addressed, whether through therapy, medication, meditation, whatever works best for you.
Anyway, that aside: you can't just fuckin. "Turn up" and "turn down" your autism/OCD/ADHD holy shit like. The only way you can do that (for ADHD and OCD at least, not really a thing w/autism) is by FUCKING TAKING MEDICATION JESUS CHRIST
Also the "medication makes you less creative" romanticization of allowing mentally il people to suffer in the name of art needs to stop. Like first of all where is the research saying this, and second of all I would rather a brilliant artist never make art and live a long, happy, and fulfilling life, than have them paint ten beautiful paintings in misery and kill themselves at 24, sorry
posted by brook horse at 6:13 PM on September 1, 2017 [12 favorites]
Anyway, that aside: you can't just fuckin. "Turn up" and "turn down" your autism/OCD/ADHD holy shit like.
Again, I think this is something that's fumbling toward a legitimate observation but gets it wrong. My personal experience is it's not that I can "dial up" or "dial down" being autistic, but I can (sometimes) deliberately turn down the "trying to pass by picking up and responding to social cues" aspect. I usually do this on the bus when somebody (usually a guy) is spreading across two seats – I'll walk up to him, paste on a bright smile, and say "Anyone sitting there? No? Great!" and plonk myself down in the seat. At that point, I visualize grasping a dial and turning down my ability/efforts to pick up on the emotions of the people around me. Huff and get pissy all you want, I don't give a shit. I let the annoyed sighs and irritated body language pass like clouds drifting in the sky…
posted by Lexica at 6:57 PM on September 1, 2017 [5 favorites]
Again, I think this is something that's fumbling toward a legitimate observation but gets it wrong. My personal experience is it's not that I can "dial up" or "dial down" being autistic, but I can (sometimes) deliberately turn down the "trying to pass by picking up and responding to social cues" aspect. I usually do this on the bus when somebody (usually a guy) is spreading across two seats – I'll walk up to him, paste on a bright smile, and say "Anyone sitting there? No? Great!" and plonk myself down in the seat. At that point, I visualize grasping a dial and turning down my ability/efforts to pick up on the emotions of the people around me. Huff and get pissy all you want, I don't give a shit. I let the annoyed sighs and irritated body language pass like clouds drifting in the sky…
posted by Lexica at 6:57 PM on September 1, 2017 [5 favorites]
To be completely clear, in case anyone mistook my comment above:
1) I am in no way saying that people shouldn't take medication to help live their lives & make them happy! I take a whole pharmacy every day. But, twist: meds don't always make you ACT more neurotypical. Getting an effective anti-depressant/anti-anxiety left me less able to camouflage, because I was using my anxiety to control my autistic tendencies, and my depression to keep me very quiet & still. There's no medication that can take autism away. So I get the choice of either being internally anxious/depressed and looking normal, or being chatty and socially inept but happier.
2) People should be able to freely choose whether to medicate or not, and should have access to a variety of perspectives. One person saying he prefers not to, and he values his & others' neurodivergence, isn't gonna deprive any of you of your meds. I must have read a different article, from my reading this guy is just asking for a teensy bit more acceptance & awareness of neurodiversity. A bit more love & compassion, for self and others. He's not saying 'ban all meds.'
3) Requiring everyone in our society to function & behave exactly like mentally healthy neurotypicals, all the time, or suffer from poverty/stigma/social rejection/homelessness/violence/etc. is a justice issue; if we can maybe accept a broader range of behaviour as acceptable, maybe more people could find a place in the world for themselves.
4) If neurotypical behaviour wasn't mandatory, behavioural training wouldn't have to exist. It's dressed up as making the kid's life 'easier' but it's not easier. Behavioural training is just abuse if the goal is compliance at the expense of happiness. I mean, my parents thought if they trained me to be an obedient housewife/mother, rather than letting me pursue academics (which they thought would lead nowhere but unmarried misery, for a woman) that would make my life easier. They just wanted me to be happy!
5) We need neuroDIVERSITY. Whatever path you choose to deal w/ your brain, you should be able to choose it freely because it makes you satisfied with life, not out of fear of society's punishment. If we can accept that humans come in many flavours, we can all live together just fine. And maybe someday I can find a job where being camouflaged at the expense of my mental health is not a requirement.
posted by it's FuriOsa, not FurioSA at 7:23 PM on September 1, 2017 [6 favorites]
1) I am in no way saying that people shouldn't take medication to help live their lives & make them happy! I take a whole pharmacy every day. But, twist: meds don't always make you ACT more neurotypical. Getting an effective anti-depressant/anti-anxiety left me less able to camouflage, because I was using my anxiety to control my autistic tendencies, and my depression to keep me very quiet & still. There's no medication that can take autism away. So I get the choice of either being internally anxious/depressed and looking normal, or being chatty and socially inept but happier.
2) People should be able to freely choose whether to medicate or not, and should have access to a variety of perspectives. One person saying he prefers not to, and he values his & others' neurodivergence, isn't gonna deprive any of you of your meds. I must have read a different article, from my reading this guy is just asking for a teensy bit more acceptance & awareness of neurodiversity. A bit more love & compassion, for self and others. He's not saying 'ban all meds.'
3) Requiring everyone in our society to function & behave exactly like mentally healthy neurotypicals, all the time, or suffer from poverty/stigma/social rejection/homelessness/violence/etc. is a justice issue; if we can maybe accept a broader range of behaviour as acceptable, maybe more people could find a place in the world for themselves.
4) If neurotypical behaviour wasn't mandatory, behavioural training wouldn't have to exist. It's dressed up as making the kid's life 'easier' but it's not easier. Behavioural training is just abuse if the goal is compliance at the expense of happiness. I mean, my parents thought if they trained me to be an obedient housewife/mother, rather than letting me pursue academics (which they thought would lead nowhere but unmarried misery, for a woman) that would make my life easier. They just wanted me to be happy!
5) We need neuroDIVERSITY. Whatever path you choose to deal w/ your brain, you should be able to choose it freely because it makes you satisfied with life, not out of fear of society's punishment. If we can accept that humans come in many flavours, we can all live together just fine. And maybe someday I can find a job where being camouflaged at the expense of my mental health is not a requirement.
posted by it's FuriOsa, not FurioSA at 7:23 PM on September 1, 2017 [6 favorites]
2) People should be able to freely choose whether to medicate or not, and should have access to a variety of perspectives. One person saying he prefers not to, and he values his & others' neurodivergence, isn't gonna deprive any of you of your meds. I must have read a different article, from my reading this guy is just asking for a teensy bit more acceptance & awareness of neurodiversity. A bit more love & compassion, for self and others. He's not saying 'ban all meds.'
I resent this dude for giving an interview in which he conflated narcolepsy, autism, and OCD, especially when he clearly doesn't know very much about the latter two, because the role of medication in just those three conditions is so vast and varied, and he clearly doesn't know how quickly his words will be weaponized against people with near-lethal depression or employment-destroying ADD who want access to medication to treat their conditions but have not tried daily 12-hr fasts or never sitting down. Or how they will weaponized by charlatans selling "alternative" snake-oil to parents who are afraid of ruining their kids' creativity and chance at being an acclaimed scientist.
Apparently this guy is a vegan. Of course he is.
posted by Snarl Furillo at 8:19 PM on September 1, 2017 [5 favorites]
I resent this dude for giving an interview in which he conflated narcolepsy, autism, and OCD, especially when he clearly doesn't know very much about the latter two, because the role of medication in just those three conditions is so vast and varied, and he clearly doesn't know how quickly his words will be weaponized against people with near-lethal depression or employment-destroying ADD who want access to medication to treat their conditions but have not tried daily 12-hr fasts or never sitting down. Or how they will weaponized by charlatans selling "alternative" snake-oil to parents who are afraid of ruining their kids' creativity and chance at being an acclaimed scientist.
Apparently this guy is a vegan. Of course he is.
posted by Snarl Furillo at 8:19 PM on September 1, 2017 [5 favorites]
he clearly doesn't know how quickly his words will be weaponized against people with near-lethal depression or employment-destroying ADD ... Or how they will weaponized by charlatans selling "alternative" snake-oil to parents who are afraid of ruining their kids' creativity ...
In both your examples, the issue is not Church harming people, but harm via 'weaponization' of his words by unscrupulous/abusive people. I mean, sure, he was clueless and speaking off the cuff about something he didn't know about. But in that, he's the same as many, many scientists I've worked with: no media training; sees interviews as mere fluff; and a little too far inside his own research to really think about what comes out of his mouth. And based on the scientists I know, if he was talking directly to a person with OCD he'd be asking questions, listening attentively, respecting their knowledge and personal experience.
So, I don't know if I can agree that we should hold him responsible for all that abuse. I still think our intolerance of neurodivergence, and our anxiety about becoming the best & most optimized worker under capitalism, is the problem. Our culture is the root of that ableism, exploitation and abuse. And ableism is also why we focus our blame on Church and overlook that the abusers should be facing consequences for using Church's words for evil aims. But if Church hadn't said what he said? I think the charlatans and abusers would just find another quote from someone else. It wouldn't slow them down.
I do understand and empathize with your anger at the situation. I'm also angry! Being neurodivergent here and now kinda mostly sucks. But part of what my autism journey has taught me is the necessity of radical empathy in a world full of suffering. Church has definitely suffered from society's mistreatment of his neurodivergence; despite his poor phrasing, the core of his statement comes down to 'love yourself and others.'
posted by it's FuriOsa, not FurioSA at 9:07 PM on September 1, 2017 [3 favorites]
In both your examples, the issue is not Church harming people, but harm via 'weaponization' of his words by unscrupulous/abusive people. I mean, sure, he was clueless and speaking off the cuff about something he didn't know about. But in that, he's the same as many, many scientists I've worked with: no media training; sees interviews as mere fluff; and a little too far inside his own research to really think about what comes out of his mouth. And based on the scientists I know, if he was talking directly to a person with OCD he'd be asking questions, listening attentively, respecting their knowledge and personal experience.
So, I don't know if I can agree that we should hold him responsible for all that abuse. I still think our intolerance of neurodivergence, and our anxiety about becoming the best & most optimized worker under capitalism, is the problem. Our culture is the root of that ableism, exploitation and abuse. And ableism is also why we focus our blame on Church and overlook that the abusers should be facing consequences for using Church's words for evil aims. But if Church hadn't said what he said? I think the charlatans and abusers would just find another quote from someone else. It wouldn't slow them down.
I do understand and empathize with your anger at the situation. I'm also angry! Being neurodivergent here and now kinda mostly sucks. But part of what my autism journey has taught me is the necessity of radical empathy in a world full of suffering. Church has definitely suffered from society's mistreatment of his neurodivergence; despite his poor phrasing, the core of his statement comes down to 'love yourself and others.'
posted by it's FuriOsa, not FurioSA at 9:07 PM on September 1, 2017 [3 favorites]
FuriOsa: of course that's what I get for being too flippant.
I'm with you. I want people to have reasonable accommodation for the opportunity to thrive. I want the discourse which wantonly labels states "disordered" to end. I want there to be wide acceptance of neuroatypical people.
posted by adoarns at 9:40 PM on September 1, 2017 [1 favorite]
I'm with you. I want people to have reasonable accommodation for the opportunity to thrive. I want the discourse which wantonly labels states "disordered" to end. I want there to be wide acceptance of neuroatypical people.
posted by adoarns at 9:40 PM on September 1, 2017 [1 favorite]
"Also, I am really turned off when he refers to people as their diagnosis. "We need more autistics and OCDs"? Way to be reductionist, man."
Many autistic people, like me, do not mind being called or referred to as autistic rather than "a person with autism". Why? because it is an essential part of who we are. There is no way to separate us and autism. We are not ashamed of being autistic. Many of us see the attempt to separate the person and autism ["people with autism"] as something imposed on us by people that really dislike autism i.e. non-autistic people that actually want to separate us from autism because of how they dislike us being autistic. Parents looking for a cure for who their child is sends a message to the child that they are the one that are wholly disliked.
" But let’s think about what we are doing when we use these terms. When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease."
I think, of course, it should be up to the person that is autistic to decide how they should be referred to, like many other identities. For me personally, an autistic woman, I ask do we called a woman a "person with womanliness"? No.
Please, everyone here, learn more about neurodiversity from many of the outstanding people in the movement [rather than a famous person just now learning about neurodiversity]. Here is one such person: Nick Walker He has put a lot of time and effort into thinking about everything related to neurodiversity. Lydia Brown is another very thoughtful and learned person in the neurodiversity movement. One you get to their websites, the sidebar can guide you on your journey. [please excuse my somewhat messy formating-- I do not post often on Metafilter.]
posted by RuvaBlue at 11:44 PM on September 1, 2017 [4 favorites]
Many autistic people, like me, do not mind being called or referred to as autistic rather than "a person with autism". Why? because it is an essential part of who we are. There is no way to separate us and autism. We are not ashamed of being autistic. Many of us see the attempt to separate the person and autism ["people with autism"] as something imposed on us by people that really dislike autism i.e. non-autistic people that actually want to separate us from autism because of how they dislike us being autistic. Parents looking for a cure for who their child is sends a message to the child that they are the one that are wholly disliked.
" But let’s think about what we are doing when we use these terms. When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease."
I think, of course, it should be up to the person that is autistic to decide how they should be referred to, like many other identities. For me personally, an autistic woman, I ask do we called a woman a "person with womanliness"? No.
Please, everyone here, learn more about neurodiversity from many of the outstanding people in the movement [rather than a famous person just now learning about neurodiversity]. Here is one such person: Nick Walker He has put a lot of time and effort into thinking about everything related to neurodiversity. Lydia Brown is another very thoughtful and learned person in the neurodiversity movement. One you get to their websites, the sidebar can guide you on your journey. [please excuse my somewhat messy formating-- I do not post often on Metafilter.]
posted by RuvaBlue at 11:44 PM on September 1, 2017 [4 favorites]
For better or (more likely) worse, we all--except for the most privileged--have to function in a world that is is set up for neurotypical people. The vast majority of non-neurotypical folks, can't afford to work part-time or not drive, or other such things that would be necessary if we are non-medicated (and it's damned hard even if we are, for most).
As a bipolar person, I'm so tired of hearing that it might not be worth trading my "creativity" and "different perspective" for medicated personality. Trust me that I'd really be functional and not miserable than have that perspective.
If some people do better without meds, that's great. But there is already a huge amount of stigma around psych meds. Let's not add to it.
posted by mkuhnell at 5:58 AM on September 2, 2017 [4 favorites]
As a bipolar person, I'm so tired of hearing that it might not be worth trading my "creativity" and "different perspective" for medicated personality. Trust me that I'd really be functional and not miserable than have that perspective.
If some people do better without meds, that's great. But there is already a huge amount of stigma around psych meds. Let's not add to it.
posted by mkuhnell at 5:58 AM on September 2, 2017 [4 favorites]
RuvaBlue, thanks for linking those articles/blogs. I wonder if the preference for Autistic over "person with autism" within that community is analogous to the concept of Deaf vs. deaf. I have heard from people, who are themselves autistic and strongly prefer person-first language, and actually explained it as when a person is equated with their diagnosis, that's an erasure of all other aspects of their personality, i.e. reductionism and essentialism. But I can see how, when something like autism is so central to identity and in danger of being squashed, the alternative might be also true. I'm not autistic (or Autistic) so I appreciate hearing from different perspectives on this.
posted by basalganglia at 7:35 AM on September 2, 2017
posted by basalganglia at 7:35 AM on September 2, 2017
But I can see how, when something like autism is so central to identity and in danger of being squashed, the alternative might be also true. I'm not autistic (or Autistic) so I appreciate hearing from different perspectives on this.
On the gripping hand, speaking as someone else on the autism spectrum, I'm rather tired of seeing my ASD diagnosis being presented as something that's "central to (my) identity" when I've spent quite a lot of time trying to prevent it from being treated as such. I didn't teach myself to read facial expressions (out of a book, natch) for my own delight, regardless of how fun it is to be able to appreciate bad acting. I haven't spent years trying to acquire social skills just because I needed a new hobby. I did it explicitly to both allow myself to pass and to reduce the number of social blunders I make -- not because of the privilege that comes with being NT but because of the fact that it reduces the number of times I embarrass myself in front of random acquaintances and it reduces the number of friends I hurt inadvertently by saying something terrible to them.
Calling me an "autistic person" is a micro aggression, something like referring to a naturalized citizen who speaks fluent English an "English language learner" because they will never be able to fully erase their original accent. I have put in way more time learning social skills than most people ever will, and the reward I get is to have it all erased by well-intended social liberals.
(And on the fourth hand, all of this means that of course ASD is a key part of my identity, in the sense that I'm doing consciously what other people do unconsciously. But, unlike how some people on the spectrum might feel, I don't think I'm faking it or adopting some sort of persona when I pass. My default mode may be closer to callous asshole, but being able to consider others' emotions is something that I actively aspire to do. It's not some sort of mask.)
And maybe there's a synthesis here, where we can accept that all perspectives are equally important. Maybe, sometime in the distant future, we will have a time when autism won't be stigmatized and so I wouldn't have ever had a reason to teach myself social skills. But, in that distant future, I suspect there wouldn't be any push against a magic cure, either -- in the absence of stigma, insisting I should prefer to be the thing I was born as is the naturalistic fallacy at work. I'm an extrovert, and I'd take the cure if only so I could get better at distinguishing between mediocre and bad acting.
Also, I'm bipolar. The shitty type where I hulk out when I'm angry. Fuck that shit. Give me my drugs.
tl;dr: People are complex, and "different perspectives" aren't monolithic. Just because one person on the autism spectrum identifies as being part of it doesn't mean everyone with ASD does. Neurodiversity speaks to some people but not to others.
posted by steady-state strawberry at 3:57 PM on September 2, 2017 [2 favorites]
On the gripping hand, speaking as someone else on the autism spectrum, I'm rather tired of seeing my ASD diagnosis being presented as something that's "central to (my) identity" when I've spent quite a lot of time trying to prevent it from being treated as such. I didn't teach myself to read facial expressions (out of a book, natch) for my own delight, regardless of how fun it is to be able to appreciate bad acting. I haven't spent years trying to acquire social skills just because I needed a new hobby. I did it explicitly to both allow myself to pass and to reduce the number of social blunders I make -- not because of the privilege that comes with being NT but because of the fact that it reduces the number of times I embarrass myself in front of random acquaintances and it reduces the number of friends I hurt inadvertently by saying something terrible to them.
Calling me an "autistic person" is a micro aggression, something like referring to a naturalized citizen who speaks fluent English an "English language learner" because they will never be able to fully erase their original accent. I have put in way more time learning social skills than most people ever will, and the reward I get is to have it all erased by well-intended social liberals.
(And on the fourth hand, all of this means that of course ASD is a key part of my identity, in the sense that I'm doing consciously what other people do unconsciously. But, unlike how some people on the spectrum might feel, I don't think I'm faking it or adopting some sort of persona when I pass. My default mode may be closer to callous asshole, but being able to consider others' emotions is something that I actively aspire to do. It's not some sort of mask.)
And maybe there's a synthesis here, where we can accept that all perspectives are equally important. Maybe, sometime in the distant future, we will have a time when autism won't be stigmatized and so I wouldn't have ever had a reason to teach myself social skills. But, in that distant future, I suspect there wouldn't be any push against a magic cure, either -- in the absence of stigma, insisting I should prefer to be the thing I was born as is the naturalistic fallacy at work. I'm an extrovert, and I'd take the cure if only so I could get better at distinguishing between mediocre and bad acting.
Also, I'm bipolar. The shitty type where I hulk out when I'm angry. Fuck that shit. Give me my drugs.
tl;dr: People are complex, and "different perspectives" aren't monolithic. Just because one person on the autism spectrum identifies as being part of it doesn't mean everyone with ASD does. Neurodiversity speaks to some people but not to others.
posted by steady-state strawberry at 3:57 PM on September 2, 2017 [2 favorites]
Happy to hear so many opinions on this article. I also thought it was quite cavalier of him to say "oh if we had more OCDs..." (and to pigeonhole people by their diagnosis, blah!) While I agree with RuvaBlue that some people don't mind, and in fact are quite happy, to be known by a diagnosis, others really bristle at being called "an OCD."
I also thought it was pretty brazen of him, as an extremely privileged white man in a prestigious position of power, to say "nah, meds aren't for me." Lots of people would love to be in a position that allows them to skip meals, stand when needed, fall asleep when needed, etc. But if you've got narcolepsy and must work a 9-5 (or 12-9 or...) shiftwork job, you'll likely just get fired when you fall asleep at the cash register.
posted by stillmoving at 5:43 AM on September 3, 2017 [3 favorites]
I also thought it was pretty brazen of him, as an extremely privileged white man in a prestigious position of power, to say "nah, meds aren't for me." Lots of people would love to be in a position that allows them to skip meals, stand when needed, fall asleep when needed, etc. But if you've got narcolepsy and must work a 9-5 (or 12-9 or...) shiftwork job, you'll likely just get fired when you fall asleep at the cash register.
posted by stillmoving at 5:43 AM on September 3, 2017 [3 favorites]
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