Heh, I definitely have feelings about this in regards to autism. I and a lot of my family members are all probably around the boundary of a formal autism diagnosis. I have never been interested in formally pursuing a diagnosis since there isn't a concrete way it would make my life better (I don't want therapy or medication, I don't need accommodations at work, etc). The only time I wish I had a formal label to use is when people are put off by me seeming unemotional or blunt around a particular topic. I am used to having very frank conversations within my family about topics like death, incapacity, etc. (for example, my dad recently had heart surgery--he's fine now--and beforehand we had a very calm and unemotional conversation about family finances, how he wants money to be managed in the event of his death or incapacitation, how he was thinking about life insurance moving forward, and so on). I have learned from experience that other families are... not always like that.
My own experience as well as watching shows like Love on the Spectrum make me wonder whether collapsing Asperger's into the autism spectrum was really on balance a helpful thing. It seems useful to have had a shorthand for saying something like "struggles in social situations, may need some support to live independently" versus "may never learn to speak." It's hard for me to see the common lines of advocacy between these two levels of severity.
Not medical, but as a (white) woman in engineering, I remember walking into the Minority Engineering Program "Finals study room", which had advertised free snacks each day of finals, with another female engineering student (who was Asian). The Minority Engineering Program at my college was, I believe, intended for (or at least in practice mainly used by) African American engineering students (who were mostly male, just because this is engineering). Everyone looked up when the two of us walked in, paused as they thought, "They're minorities in engineering how...? And then remembered, "Oh, right, they're girls." And went back to studying. Felt like we were sneaking in a bit from the edge of the intended population there, but we were college kids and wanted the free snacks.
After graduation, I got invited often to speak on Diversity in Engineering panels for undergraduate students. I married into a Hispanic last name (after growing up with a German one) and I think there were a number of surprised looks each time I showed up and some number of organizers or guests expected me to be Puerto Rican. Nope, just a woman in engineering. That's the only minority/diversity claim I have. 😅 Plus almost all my siblings are engineers, including my sister, so I didn't have that much in common with racial minority students with "first in my family to go to college and I picked engineering" backgrounds. (Though we could bond over engineering school being hard, no matter who you were!)
(For anyone considering engineering school, I'd recommend it, especially for women, even as hard as the classes are, my after graduation job was cool and interesting and way easier than school, and I could negotiate more easily for post-maternity benefits, since I was in a "minority" category they wanted to retain at their company.)
"When the definition of Ehlers-Danlos syndrome [EDS] was broadened to include people without a known genetic variant, the new population of patients quickly made up eighty to ninety percent of all cases. O’Sullivan is attentive to cases where the prevalence of the disorder (as originally described) is not increasing, but more and more people with mild or variant versions are identifying with the diagnosis."
I'm in that 80-90%, myself, with measurable joint and skin abnormalities exceeding the diagnostic threshold. For me, having EDS, along with the severity of my asthma/atopy, recognized for what they are helps fend off *other* inappropriate diagnoses and treatments, especially psychiatric.
I am not bipolar, for example. The only way to fit me into a bipolar diagnosis is to hypothesize that what would count as merely normal functioning and mood for others is somehow "hypomania" for me, pathologizing my person so that I can't even experience normality without its being judged a symptom of my supposed abnormality.
Still, without adequate explanations for why seemingly minor brushes with injury, allergens, or germs can knock me into weeks-long funks, leaving me frantically (though not (hypo)manically) scrambling to catch up when they subside, hypothesizing that my sickness behavior is some bipolar-like form of depression, and treating me accordingly, is tempting. For clearly, *something* is wrong. My behavior *is* unsatisfactory – to others, and myself, for reasons that seem independent (to most clinicians, and most people) from "shitty character". Fairly wide fluctuations around my hypothesized baseline mood are often fairly easily explained by physical causes – but by physical causes quite easy to overlook, unless you know to look for them.
Some of the overlookage I brought upon myself – by, for example, being too young and stupid to keep a consistent peak flow (asthma measurement) diary. It wasn't till my first pregnancy, when I had someone besides myself dependent on my oxygen supply, that I tracked peak flow carefully enough to notice that "yellow zone" asthma (neither the "red zone" of an attack nor the "green zone" of adequately-controlled asthma) corresponded with behavior depressed enough to include suicidal ideation. I concede a psyche more normal than my own might handle sub-acute respiratory distress *better* than mine apparently does, but the surest treatment for "yellow zone" funk is to adequately treat the asthma.
Meanwhile, EDS has no direct treatment, but acknowledging that aches and pains may really be more present in a body that's physically more susceptible to them, rather than trying to interpret the physical discomfort as some sort of somatization of a psychiatric abnormality, can go a long way to restoring sanity when the acknowledgment is closer to the truth than the alternate, psychosomatic hypothesis is.
ETA: The harder it becomes to escape diagnosis of *some* kind, the more important it becomes to seek out diagnosis that best fits your predicament. For the risks of getting stuck with misdiagnosis become correspondingly higher.
There was a period in 2023 during which I suffered from anxiety over predestination, to the point of having a couple panic attacks. While it was not so severe as to require medication or regular counseling, I benefited greatly from being able to name what was going on, and drawing on my wife's experience with much more severe, crippling anxiety when she was in grad school. She taught me some of the stress management and reframing techniques that she had learned, which combined with a few counseling sessions and some good spiritual directions, helped me get to a point where the anxious thoughts largely receded and I could live normally again. I was obviously a far cry from the sorts of people whose anxiety limits their ability to go to the store, for example, but I think I would have been in a much worse position if those tools for treating anxiety weren't available to me. I wouldn't really want to put myself in the exact same boat as someone with a severe, chronic anxiety disorder, but in my case it very much helped being able to place myself on the outer edges of that group.
I want to tread lightly here because I don’t personally have the kind of severe, obvious needs that this discussion is mostly about…but that being said, there are definitely people close to me who are well served by various disability services and a “broad criteria” framework. In my limited experience, I’m finding it often makes sense to try to communicate about specific needs rather than a blanket descriptor of [diagnosis]. (In contrast, I’ve had other parents explain potentially unexpected behaviors in public by saying something like “They have [diagnosis]”, as if that is a sufficient explanation of how we can best understand or serve the need. I wonder if it would be more helpful to all of us to say something more like “They are working on [specific tricky skill].”) Obviously the issue is not *always* or *all* semantic—but I think a fair amount of it sometimes can be. And the answer may sometimes be, to my mind, more explicit or proactive communication. I’m not sure how true this may be in more severe-need situations, since that’s outside of my experience. Eager to learn from others on this.
Yes, I think clear info about how to support someone (eg “my child does better with clear warnings leading up to transitions”) is a big help, with or without a diagnosis to justify it
This definitely applied to my life partner when she had increasing memory and cognition problems. For one thing, her medical diagnosis was ambiguous (Alzheimer's? Maybe more likely, Lewey Body Disease?) So with strange doctors, I concentrated on what she needed. (In an ER? Definitely no Haldol no matter what, because if it was LBD it could cause irreversible damage.) Mainly -- just what she needed and wanted. (Yes, I did "spoil" her a lot. Why not?) We chose a primary care doctor and a "brain doc" and a social work therapist who did the same thing -- no talk of diagnosis, just what she needed at the time. Luckily our Episcopal priest did the same. I realized all through how absolutely lucky and blessed we were.
I was diagnosed with obsessive-compulsive disorder thirteen years ago. To some, that makes me "neurodivergent."
I really do not identify with this category at all and find it completely unhelpful for people who have anxiety-related disorders like OCD. I think the same way and conceptualize ideas, process information, etc in the same way a "normal" person without OCD does. I do not have any unusual perceptual or mental differences.
I actually don't think this category is helpful in general, since it lumps in people with autism (which is also too diagnostically broad), people with ADHD (imo overdiagnosed), etc and these people not only differ from the normal population in neural processing but significantly differ from each other! I am not sure how someone who has difficulty focusing on tasks is related to a person with autism who can't process social cues normally. Those are two completely different problems and different disorders, even though they can be comorbid.
I likewise don't identify with "neurodivergent" despite probably qualifying. Or as "disabled", though I could technically qualify, and I agree with Freddie deBoer on the importance of recognizing that disability is in most situations dis-ability – a difference making ordinary life more burdensome:
"[T]he very concept of disability depends on the notion that disabilities are inherently negative... the affordances we make for people with disabilities... depend on the idea that these things are both unchosen and harmful. If they’re not, then there’s no communal obligation to accommodate them. What would they even need accommodation for?"
"I am not sure how someone who has difficulty focusing on tasks is related to a person with autism who can't process social cues normally."
Well, processing social cues is a complicated task. And social cues are normally used to direct task management and task-switching. If you're not focused, you miss social cues. And if you miss social cues, directing your focus to tasks in a socially-appropriate manner is harder.
When the school informed us that my eldest was eligible for an educational diagnosis of autism, we lucked into independent autism testing supervised by a doctor who publishes on the dangers of overdiagnosis, suggesting this doctor is *less* likely than average to overdiagnose autism, making a positive diagnosis from this doctor more definitive. Independent testing with this doctor confirmed autism, though high-functioning. Difficulty with task management in the intensely social setting where learning most tasks takes place (like school – the family and workplace are also intensely social settings) was one of the primary signs.
I have a kid with a fairly new ADHD diagnosis (hyperactive subtype, the one that elder millenials like me automatically think of), and I too have been interested in how younger generations, including my kid's occupational therapy assistant, automatically see ADHD and autism as being related. My guess is that some of the connection is about being easily overloaded by stimuli, rather than task orientation or social cue awareness. I've been meaning to ask the OTA about that.
When I was around eight or nine years old, I was diagnosed with nonverbal learning disorder (NVLD), a diagnosis that was hard to place. Some clinicians put it in the autistic spectrum, some put in more in line with various other learning disabilities like ADHD or dislexia. The name indicates I have trouble determining nonverbal cues like gestures and facial expressions, though there's more to it than that. This is a pretty newly proposed condition but still isn't any DSM manual. Not sure if it will be anytime soon, as it's already been less diagnosed. After a few employment barriers, I had my therapist refer me for a new neuropsych this year, and I'm autistic. Of course, I want to use my voice to advocate for my people (and NVLD people are especially good with words), but maybe because I am good with words that my autism seems inauthentic to some. And I had pretty normal to advanced key development stages in my infancy and early childhood. Only odd thing was I didn't crawl, I scooted on my back. But that's still me today, coming up with alternate methods and neglecting simpler ones. Thanks to a lot of scare marketing from orgs like Autism Speaks, people still have the same vision of autism: a kid who shakes his body often and doesn't speak until he's six years old. But that was never me. Some representation has gotten better, like I especially thought Temperance "Bones" Brennan on the show "Bones" is a pretty accurate representation. And Chris Rock has NVLD too. There's a scene in "Everybody Hates Chris" where Chris is confused when someone refers to another character as "looking like [Chris]" and said character is black, "resemblance stops there." Very NVLD response, as I too get a bit confused about what the "looks like me" euphanism could imply. Anyway, some may find me a bad advocate *because* I'm a good advocate. Of course, my social anxiety and awkwardness can give me away. There's embedded things in me that can give people indicators, but I feel because you can't always tell at surface level people might think I'm not real.
Heh, I definitely have feelings about this in regards to autism. I and a lot of my family members are all probably around the boundary of a formal autism diagnosis. I have never been interested in formally pursuing a diagnosis since there isn't a concrete way it would make my life better (I don't want therapy or medication, I don't need accommodations at work, etc). The only time I wish I had a formal label to use is when people are put off by me seeming unemotional or blunt around a particular topic. I am used to having very frank conversations within my family about topics like death, incapacity, etc. (for example, my dad recently had heart surgery--he's fine now--and beforehand we had a very calm and unemotional conversation about family finances, how he wants money to be managed in the event of his death or incapacitation, how he was thinking about life insurance moving forward, and so on). I have learned from experience that other families are... not always like that.
My own experience as well as watching shows like Love on the Spectrum make me wonder whether collapsing Asperger's into the autism spectrum was really on balance a helpful thing. It seems useful to have had a shorthand for saying something like "struggles in social situations, may need some support to live independently" versus "may never learn to speak." It's hard for me to see the common lines of advocacy between these two levels of severity.
I am in a similar boat!
Not medical, but as a (white) woman in engineering, I remember walking into the Minority Engineering Program "Finals study room", which had advertised free snacks each day of finals, with another female engineering student (who was Asian). The Minority Engineering Program at my college was, I believe, intended for (or at least in practice mainly used by) African American engineering students (who were mostly male, just because this is engineering). Everyone looked up when the two of us walked in, paused as they thought, "They're minorities in engineering how...? And then remembered, "Oh, right, they're girls." And went back to studying. Felt like we were sneaking in a bit from the edge of the intended population there, but we were college kids and wanted the free snacks.
After graduation, I got invited often to speak on Diversity in Engineering panels for undergraduate students. I married into a Hispanic last name (after growing up with a German one) and I think there were a number of surprised looks each time I showed up and some number of organizers or guests expected me to be Puerto Rican. Nope, just a woman in engineering. That's the only minority/diversity claim I have. 😅 Plus almost all my siblings are engineers, including my sister, so I didn't have that much in common with racial minority students with "first in my family to go to college and I picked engineering" backgrounds. (Though we could bond over engineering school being hard, no matter who you were!)
(For anyone considering engineering school, I'd recommend it, especially for women, even as hard as the classes are, my after graduation job was cool and interesting and way easier than school, and I could negotiate more easily for post-maternity benefits, since I was in a "minority" category they wanted to retain at their company.)
Quoting from "Fairer Disputations":
"When the definition of Ehlers-Danlos syndrome [EDS] was broadened to include people without a known genetic variant, the new population of patients quickly made up eighty to ninety percent of all cases. O’Sullivan is attentive to cases where the prevalence of the disorder (as originally described) is not increasing, but more and more people with mild or variant versions are identifying with the diagnosis."
I'm in that 80-90%, myself, with measurable joint and skin abnormalities exceeding the diagnostic threshold. For me, having EDS, along with the severity of my asthma/atopy, recognized for what they are helps fend off *other* inappropriate diagnoses and treatments, especially psychiatric.
I am not bipolar, for example. The only way to fit me into a bipolar diagnosis is to hypothesize that what would count as merely normal functioning and mood for others is somehow "hypomania" for me, pathologizing my person so that I can't even experience normality without its being judged a symptom of my supposed abnormality.
Still, without adequate explanations for why seemingly minor brushes with injury, allergens, or germs can knock me into weeks-long funks, leaving me frantically (though not (hypo)manically) scrambling to catch up when they subside, hypothesizing that my sickness behavior is some bipolar-like form of depression, and treating me accordingly, is tempting. For clearly, *something* is wrong. My behavior *is* unsatisfactory – to others, and myself, for reasons that seem independent (to most clinicians, and most people) from "shitty character". Fairly wide fluctuations around my hypothesized baseline mood are often fairly easily explained by physical causes – but by physical causes quite easy to overlook, unless you know to look for them.
Some of the overlookage I brought upon myself – by, for example, being too young and stupid to keep a consistent peak flow (asthma measurement) diary. It wasn't till my first pregnancy, when I had someone besides myself dependent on my oxygen supply, that I tracked peak flow carefully enough to notice that "yellow zone" asthma (neither the "red zone" of an attack nor the "green zone" of adequately-controlled asthma) corresponded with behavior depressed enough to include suicidal ideation. I concede a psyche more normal than my own might handle sub-acute respiratory distress *better* than mine apparently does, but the surest treatment for "yellow zone" funk is to adequately treat the asthma.
Meanwhile, EDS has no direct treatment, but acknowledging that aches and pains may really be more present in a body that's physically more susceptible to them, rather than trying to interpret the physical discomfort as some sort of somatization of a psychiatric abnormality, can go a long way to restoring sanity when the acknowledgment is closer to the truth than the alternate, psychosomatic hypothesis is.
ETA: The harder it becomes to escape diagnosis of *some* kind, the more important it becomes to seek out diagnosis that best fits your predicament. For the risks of getting stuck with misdiagnosis become correspondingly higher.
There was a period in 2023 during which I suffered from anxiety over predestination, to the point of having a couple panic attacks. While it was not so severe as to require medication or regular counseling, I benefited greatly from being able to name what was going on, and drawing on my wife's experience with much more severe, crippling anxiety when she was in grad school. She taught me some of the stress management and reframing techniques that she had learned, which combined with a few counseling sessions and some good spiritual directions, helped me get to a point where the anxious thoughts largely receded and I could live normally again. I was obviously a far cry from the sorts of people whose anxiety limits their ability to go to the store, for example, but I think I would have been in a much worse position if those tools for treating anxiety weren't available to me. I wouldn't really want to put myself in the exact same boat as someone with a severe, chronic anxiety disorder, but in my case it very much helped being able to place myself on the outer edges of that group.
I want to tread lightly here because I don’t personally have the kind of severe, obvious needs that this discussion is mostly about…but that being said, there are definitely people close to me who are well served by various disability services and a “broad criteria” framework. In my limited experience, I’m finding it often makes sense to try to communicate about specific needs rather than a blanket descriptor of [diagnosis]. (In contrast, I’ve had other parents explain potentially unexpected behaviors in public by saying something like “They have [diagnosis]”, as if that is a sufficient explanation of how we can best understand or serve the need. I wonder if it would be more helpful to all of us to say something more like “They are working on [specific tricky skill].”) Obviously the issue is not *always* or *all* semantic—but I think a fair amount of it sometimes can be. And the answer may sometimes be, to my mind, more explicit or proactive communication. I’m not sure how true this may be in more severe-need situations, since that’s outside of my experience. Eager to learn from others on this.
Yes, I think clear info about how to support someone (eg “my child does better with clear warnings leading up to transitions”) is a big help, with or without a diagnosis to justify it
This definitely applied to my life partner when she had increasing memory and cognition problems. For one thing, her medical diagnosis was ambiguous (Alzheimer's? Maybe more likely, Lewey Body Disease?) So with strange doctors, I concentrated on what she needed. (In an ER? Definitely no Haldol no matter what, because if it was LBD it could cause irreversible damage.) Mainly -- just what she needed and wanted. (Yes, I did "spoil" her a lot. Why not?) We chose a primary care doctor and a "brain doc" and a social work therapist who did the same thing -- no talk of diagnosis, just what she needed at the time. Luckily our Episcopal priest did the same. I realized all through how absolutely lucky and blessed we were.
I was diagnosed with obsessive-compulsive disorder thirteen years ago. To some, that makes me "neurodivergent."
I really do not identify with this category at all and find it completely unhelpful for people who have anxiety-related disorders like OCD. I think the same way and conceptualize ideas, process information, etc in the same way a "normal" person without OCD does. I do not have any unusual perceptual or mental differences.
I actually don't think this category is helpful in general, since it lumps in people with autism (which is also too diagnostically broad), people with ADHD (imo overdiagnosed), etc and these people not only differ from the normal population in neural processing but significantly differ from each other! I am not sure how someone who has difficulty focusing on tasks is related to a person with autism who can't process social cues normally. Those are two completely different problems and different disorders, even though they can be comorbid.
I likewise don't identify with "neurodivergent" despite probably qualifying. Or as "disabled", though I could technically qualify, and I agree with Freddie deBoer on the importance of recognizing that disability is in most situations dis-ability – a difference making ordinary life more burdensome:
"[T]he very concept of disability depends on the notion that disabilities are inherently negative... the affordances we make for people with disabilities... depend on the idea that these things are both unchosen and harmful. If they’re not, then there’s no communal obligation to accommodate them. What would they even need accommodation for?"
https://freddiedeboer.substack.com/p/the-gentrification-of-disability
"I am not sure how someone who has difficulty focusing on tasks is related to a person with autism who can't process social cues normally."
Well, processing social cues is a complicated task. And social cues are normally used to direct task management and task-switching. If you're not focused, you miss social cues. And if you miss social cues, directing your focus to tasks in a socially-appropriate manner is harder.
When the school informed us that my eldest was eligible for an educational diagnosis of autism, we lucked into independent autism testing supervised by a doctor who publishes on the dangers of overdiagnosis, suggesting this doctor is *less* likely than average to overdiagnose autism, making a positive diagnosis from this doctor more definitive. Independent testing with this doctor confirmed autism, though high-functioning. Difficulty with task management in the intensely social setting where learning most tasks takes place (like school – the family and workplace are also intensely social settings) was one of the primary signs.
I have a kid with a fairly new ADHD diagnosis (hyperactive subtype, the one that elder millenials like me automatically think of), and I too have been interested in how younger generations, including my kid's occupational therapy assistant, automatically see ADHD and autism as being related. My guess is that some of the connection is about being easily overloaded by stimuli, rather than task orientation or social cue awareness. I've been meaning to ask the OTA about that.
When I was around eight or nine years old, I was diagnosed with nonverbal learning disorder (NVLD), a diagnosis that was hard to place. Some clinicians put it in the autistic spectrum, some put in more in line with various other learning disabilities like ADHD or dislexia. The name indicates I have trouble determining nonverbal cues like gestures and facial expressions, though there's more to it than that. This is a pretty newly proposed condition but still isn't any DSM manual. Not sure if it will be anytime soon, as it's already been less diagnosed. After a few employment barriers, I had my therapist refer me for a new neuropsych this year, and I'm autistic. Of course, I want to use my voice to advocate for my people (and NVLD people are especially good with words), but maybe because I am good with words that my autism seems inauthentic to some. And I had pretty normal to advanced key development stages in my infancy and early childhood. Only odd thing was I didn't crawl, I scooted on my back. But that's still me today, coming up with alternate methods and neglecting simpler ones. Thanks to a lot of scare marketing from orgs like Autism Speaks, people still have the same vision of autism: a kid who shakes his body often and doesn't speak until he's six years old. But that was never me. Some representation has gotten better, like I especially thought Temperance "Bones" Brennan on the show "Bones" is a pretty accurate representation. And Chris Rock has NVLD too. There's a scene in "Everybody Hates Chris" where Chris is confused when someone refers to another character as "looking like [Chris]" and said character is black, "resemblance stops there." Very NVLD response, as I too get a bit confused about what the "looks like me" euphanism could imply. Anyway, some may find me a bad advocate *because* I'm a good advocate. Of course, my social anxiety and awkwardness can give me away. There's embedded things in me that can give people indicators, but I feel because you can't always tell at surface level people might think I'm not real.