So, I make a lot of money for someone my age, especially in this economy, who doesn't come from wealthy parents. In fact I make more than the average U.S. household. The fact that right before landing this job over two years ago, I was a disabled college student who didn't see much hope for my future employability just makes that... weirder.
I don't like making so much money that I feel ashamed when around my friends. I don't like the way people above me smile when they talk about bonuses and raises, like they think they're giving me what I want. I'm not doing this job so I can make yet more than the more-than-I-need they already pay me. For me, the biggest reward is the stability and security, emotional, social, and financial, that I get every day from coming into work where I'm valued and where appropriate professional boundaries are maintained along with a small, fairly stable social group in the form of my team and those we work frequently with. The second-biggest reward is the pleasure of getting to work on intellectual puzzles and hold complex information systems in my head and brainstorm solutions with smart people I can learn a lot from.
The years at this job have taken me high up Maslow's hierarchy of needs--from shakiness on the physiological and safety tiers to having a strong grasp on physiological, safety, and esteem needs (love/belonging is still tenuous for me, but my current relationship and a friendship I made through work are fulfilling those needs--the shakiness is in the small number of people I can rely on). I'm partially self-actualized, but now that the ground beneath me is fairly firm I don't need to keep myself from becoming even more self-actualized.
My problem, then, is on the level of moral self-actualization. I don't want to benefit past my level of need from a messed up valuation system that favors me because I have abilities that corporations have high demand for while the local labor market has low supply of. I'd rather work to make everyone valued, rather than work to be valued more than everyone.
But my personal experience, that transformation from desperate kid to self-confident professional who's willing to follow zir heart? I think that points toward some small ways I or someone else might help people with disabilities become more valued. For me, all it took was someone who saw my talents--despite knowing my impairments--being willing to put themself on the line to recommend me for a good job I wasn't yet qualified for. There've got to be ways to systematically help disadvantaged people find good jobs outside the regular hiring process, which discriminates against them or just plain isn't accessible.
I frequently daydream of mentoring autistic interns in my field.
Are there people whose job it is to go around to businesses and see which are most open to hiring people with disabilities, and then represent clients with disabilities during the hiring process? That is, explain accommodation and alternate communication needs, while reminding the employers that it is in fact against the law to discriminate on the basis of disabilities? I know I read a quote from an adult with selective mutism about how they went for a job interview but lost it because they couldn't speak--and apparently didn't have the opportunity to type through the interview instead, or maybe lacked the self-confidence. I think it would be a big help just to have someone else's support in communicating, "Hey, I may or may not be able to mouthspeak during the interview, but that's not going to stop me," and then have that person there to help them manage anxiety during the interview and reschedule if necessary. It would probably also be a huge relief for a candidate going in if they could know beforehand that the business was fine with hiring someone with an anxiety disorder and was willing to provide support rather than requiring employees to pretend emotions don't exist.
I know, helping people who can get jobs to get jobs doesn't help with equality for all those who can't hold jobs or choose not to, nor does it help make all employed workers equal to each other, but every life transformed for the better is a step in the right direction.
Thursday, August 21, 2014
Sunday, August 17, 2014
On Perceptions of Overdiagnosis
Last night I was sitting around a table with a group of three acquaintances who each had well over 40 years on me. You can imagine I wasn't terribly prone to intervene in their discussion on a highly personal, highly emotional issue for me, so I will anonymously send my reply to their thoughts into the void here. ;)
They were talking about the recent increase in estimate for prevalence of autistic children, and lumped that in with other "fad" diagnoses--including ADHD and depression. Quotes included "Truly autistic children are a hardship for the parents."
Now, there's no way on Earth I'd meet such people's criteria for "truly autistic," and I don't personally think I meet the diagnostic criteria even though actual professionals have been split as to my spectrum status. And yet, receiving that diagnosis was my gateway into a world where I could be okay and become empowered to protect myself from those who would harm me because I can't always speak or control my physical motions.
There aren't any words for how much that means. Basic physical and emotional safety plus a basic sense of worthiness as a person despite not always meeting others' criteria of what a person "should" be able to do, and on top of that scaffold a community and a chance to fight communally for other needs, like financial security and equal access to education and employment. Plus the confidence and tools to enter into intimate relationships and know I can manage my needs and risks. I will never let that be taken away from me, and I don't want that denied anyone in the name of reining in a "fad" diagnosis.
Autistic people face special prejudice that makes accusations of overdiagnosis uniquely threatening to them. That idea of "truly autistic" people who are such a burden, as separate from all the kids getting "overdiagnosed"? That's a way of protecting an understanding of autistic individuals as subhuman, such that their parents are worthy of sympathy but they aren't. Autistics who speak or write about neurodiversity are often dismissed as non-autistic from such a standpoint because their ability to communicate and "prove" their equality with their words challenges people to see all autistics as equally human and equally entitled to rights, and that's too painful for some people to bear.
But for every story I can repeat or imagine of someone being harmed by a perception of overdiagnosis, there are also those harmed by diagnosis that does more harm than good. Off-the-wall false perceptions, like a vegetarian who obsesses in anguish over violence in the world being told they're incapable of empathy; medicalization being used to prop up dysfunctional and unjust social structures, like schools without recess and hands-on activities or workplace hierarchies thrusting those on the bottom into depression; labels that prevent someone from exploring and expanding their full abilities; ODD and ADHD diagnoses being used to reinforce and codify prejudice-based perceptions of some children as inferior due to traits like gender, race, and poverty; pharmaceutical companies intentionally inducing patient, parental, and teacher hypochondria in order to sell more of a drug that may do more harm than good to most who are prescribed it; someone being diagnosed only to find that those closest to them suddenly view all of their behavior, including quirks, habits, and preferences once viewed as neutral or positive, through a negative diagnostic lens, evoking revulsion rather than respect; medical professionals looking at a line in a patient's record and deciding to disbelieve everything they say because of it.
These are all real things, the ones that point to more diagnostic enthusiasm and those that point to restraint, to belief and to skepticism. The real world isn't an ideological party game where whoever makes the most moving argument for a particular polarized view gets to wipe away all the pain in the world. So I'm not going to sit here and say, "No, more diagnosis is a good thing! It helps people know who they are, how they're okay, and how to survive in a hostile world and maybe even make it more tolerant for people like them. The only problem is all the stigma associated with a diagnosis that make it a negative thing rather than a positive tool in self-understanding and getting accommodations!"
Instead, I'm going to say that a medicalized, diagnostic lens has serious weaknesses as the predominant way individuals and society understand, explore, and interact with theories of psychological and neurological diversity. It's entrenched for some pretty basic reasons: It's a way of rationing help in the form of therapy, medications, and flexibility when it comes to school and workplace accommodations. In an ideal world we wouldn't ration these things, and each of us today can work towards ending the rationing of inexpensive forms of help like social inclusion, many accommodations, and respect as a human being, so I think it's time to start thinking past the diagnostic framework.
So, some of its limitations:
1. It sees human differences as deficits, and only sees differences that are deficits, or that it can label as deficits.
A hyperactive individual isn't seen as a dynamic personality with a gift for the performing arts, a healthy need for exercise, and a drive to perform hands-on productive activities, but rather as someone who lacks abilities like sitting still, keeping quiet, and staying on topic. I'm not saying that impairments don't exist or should be ignored and never need to be treated, but there's a serious one-sidedness to medicalization.
2. It highlights one trait or one constellation of traits that has been described in the medical literature and is familiar to the diagnosing professional, but may not be relevant, adequate, or accurate to understanding an individual's situation.
I suffered from serious--debilitating, even life-threatening--anxiety and depression throughout my school years, but concepts like "social anxiety" or "academic anxiety" are fairly shallow. A good therapist probably could have discovered and helped me with my core issues, but it was a lot easier for someone to just tell me I needed better "coping strategies" (when I didn't have the necessary emotional space provided by a basic sense of security to practice coping strategies, nor did I have sufficient understanding of my emotional states to figure out what I needed when) or prescribe a medication that was either useless or exacerbated my symptoms. Written guides on dealing with anxiety often assumed that symptoms included an elevated heart rate and the like, whereas in my case they tended to include lethargy and paralysis--basically the opposite. Everything I could find written on "conversion disorder", a diagnosis I heard a lot in my late teens, described a long-lasting loss of specific bodily function in a patient who usually denied that it was psychosomatic and insisted on finding a physical cause; I assumed from the beginning that my ever-changing, minutes-to-hours paralysis and loss-of-balance symptoms were psychosomatic. What actually helped was the social and economic security of a good job--not something I've ever seen proposed as a cure for anxiety and depression in young adults or adolescents.
As for autism, I don't think I meet the diagnostic criteria, but I do believe that I'm neurodivergent with a constellation of traits that no one's drawn a circle around and given a label. This leads to the anguish of falling in-between two black-and-white categories that don't really describe reality but that many people believe in and use as bars for accommodations or inclusion in certain communities--in this case, autistic and neurotypical, but a sensation I'm familiar with in other contexts as well.
3. It asserts and requires that the individuals it's speaking about fall outside the typical range on the metrics of diagnosis.
In some cases, an individual with a psychiatric diagnosis has a mind and abilities that are clearly very different from others in a way that impairs expected function in a capitalist society. These individuals tend to get called things like "floridly psychotic", "low-functioning autistic," or "shut-in." But then you can line up a whole group of people who experience things in common with these people and range from wildly successful (by some set of common societal standards) to completely "normal" to struggling but making it to unable to even think about employment. And then you see that of these people, where they fall on the line varies wildly dependent on situation, task, and what environment and supports they have. And then you look at yourself and/or the other "unaffected" people around you and realize that many of you struggle with some of the same challenges and have learned to deal with them and understand yourselves using lessons from these other people with a diagnosis.
An outgoing person with above-average self-confidence might struggle with social anxiety when they begin giving presentations at work--does this warrant a diagnosis? Why are we even asking that question? What messages do we give about managing one's own anxiety levels and understanding and responding to others' anxiety levels when those levels are in the average range or lower than it? Generally the "anxiety disorder" construct overshadows real understanding.
When I was a child, I saw ghosts and sensed terrifying "demons"--extrasensory hallucinations, often as I was falling asleep at night. I tried praying for help with the demons, but eventually I found that logic made my fear--and eventually my hallucinations--go away much more effectively. I have a strong motivation for not believing in the supernatural world, now, because I'm afraid doing so could send me further and further away from reality, though I've never been diagnosed with a psychotic disorder and don't generally struggle with such. And yet I once heard the story of a woman who was in and out of a psychiatric hospital whose psychotic breaks centered around religious delusions--and who achieved significant stabilization when she, like me, abandoned her religious beliefs in favor of more scientific rationality. How far apart are we, actually?
There are many additional psychological and neurological differences that are powerful tools for self-understanding that don't require one to be worse-than-average--but that seem less emphasized in our culture. For instance, exploring the concept of working memory can help in understanding one's own learning style as well as how to problem-solve with others whose brains work differently--regardless of how "good" or "bad" yours is.
Getting hung up on diagnostic judgment calls--and value judgments--just detracts from understanding how the same patterns operate in those who can be pathologized as well as those who can't, and maximizing the ability of research and observation to help us get along with ourselves and others.
4. It places responsibility for difficulties on the individual and not society.
Rumor is that a highly driven, highly talented, now-externally-successful student in my high school social group dropped out of high school after getting a doctor's note saying it was bad for him. Instead he pursued computer science interests on his own while taking community college classes and was in a PhD program before the rest of us had our undergrad degrees. But support in pursuing a better life is rarely the outcome of students being diagnosed with things that often correspond to "school is bad for you"--depression and anxiety can be caused by a bad environment; ADHD, ASD, and learning disabilities are often only classified as disorders because the education system's expectations are too rigid; schizophrenia and many already-mentioned diagnoses can result in school being a punishing experience.
When we send someone to therapy and/or put them on medication and don't change their environment even though changes to their environment could alleviate some or all of their problems, we're putting that person through additional hardship in order to perpetuate societal structures that are making other people suffer, as well. If someone can't work a 40+ hour week due to psychological limitations, should we be trying to medicate them or asking why a society overflowing with material goods requires such efforts before someone has access to a basic level of them? Or asking where the strain comes from--a cruel boss, absurd corporate standards like firing employees if a single customer complains, a workplace full of loud noises and flickering florescent lights?
They were talking about the recent increase in estimate for prevalence of autistic children, and lumped that in with other "fad" diagnoses--including ADHD and depression. Quotes included "Truly autistic children are a hardship for the parents."
Now, there's no way on Earth I'd meet such people's criteria for "truly autistic," and I don't personally think I meet the diagnostic criteria even though actual professionals have been split as to my spectrum status. And yet, receiving that diagnosis was my gateway into a world where I could be okay and become empowered to protect myself from those who would harm me because I can't always speak or control my physical motions.
There aren't any words for how much that means. Basic physical and emotional safety plus a basic sense of worthiness as a person despite not always meeting others' criteria of what a person "should" be able to do, and on top of that scaffold a community and a chance to fight communally for other needs, like financial security and equal access to education and employment. Plus the confidence and tools to enter into intimate relationships and know I can manage my needs and risks. I will never let that be taken away from me, and I don't want that denied anyone in the name of reining in a "fad" diagnosis.
Autistic people face special prejudice that makes accusations of overdiagnosis uniquely threatening to them. That idea of "truly autistic" people who are such a burden, as separate from all the kids getting "overdiagnosed"? That's a way of protecting an understanding of autistic individuals as subhuman, such that their parents are worthy of sympathy but they aren't. Autistics who speak or write about neurodiversity are often dismissed as non-autistic from such a standpoint because their ability to communicate and "prove" their equality with their words challenges people to see all autistics as equally human and equally entitled to rights, and that's too painful for some people to bear.
But for every story I can repeat or imagine of someone being harmed by a perception of overdiagnosis, there are also those harmed by diagnosis that does more harm than good. Off-the-wall false perceptions, like a vegetarian who obsesses in anguish over violence in the world being told they're incapable of empathy; medicalization being used to prop up dysfunctional and unjust social structures, like schools without recess and hands-on activities or workplace hierarchies thrusting those on the bottom into depression; labels that prevent someone from exploring and expanding their full abilities; ODD and ADHD diagnoses being used to reinforce and codify prejudice-based perceptions of some children as inferior due to traits like gender, race, and poverty; pharmaceutical companies intentionally inducing patient, parental, and teacher hypochondria in order to sell more of a drug that may do more harm than good to most who are prescribed it; someone being diagnosed only to find that those closest to them suddenly view all of their behavior, including quirks, habits, and preferences once viewed as neutral or positive, through a negative diagnostic lens, evoking revulsion rather than respect; medical professionals looking at a line in a patient's record and deciding to disbelieve everything they say because of it.
...
These are all real things, the ones that point to more diagnostic enthusiasm and those that point to restraint, to belief and to skepticism. The real world isn't an ideological party game where whoever makes the most moving argument for a particular polarized view gets to wipe away all the pain in the world. So I'm not going to sit here and say, "No, more diagnosis is a good thing! It helps people know who they are, how they're okay, and how to survive in a hostile world and maybe even make it more tolerant for people like them. The only problem is all the stigma associated with a diagnosis that make it a negative thing rather than a positive tool in self-understanding and getting accommodations!"
Instead, I'm going to say that a medicalized, diagnostic lens has serious weaknesses as the predominant way individuals and society understand, explore, and interact with theories of psychological and neurological diversity. It's entrenched for some pretty basic reasons: It's a way of rationing help in the form of therapy, medications, and flexibility when it comes to school and workplace accommodations. In an ideal world we wouldn't ration these things, and each of us today can work towards ending the rationing of inexpensive forms of help like social inclusion, many accommodations, and respect as a human being, so I think it's time to start thinking past the diagnostic framework.
So, some of its limitations:
1. It sees human differences as deficits, and only sees differences that are deficits, or that it can label as deficits.
A hyperactive individual isn't seen as a dynamic personality with a gift for the performing arts, a healthy need for exercise, and a drive to perform hands-on productive activities, but rather as someone who lacks abilities like sitting still, keeping quiet, and staying on topic. I'm not saying that impairments don't exist or should be ignored and never need to be treated, but there's a serious one-sidedness to medicalization.
2. It highlights one trait or one constellation of traits that has been described in the medical literature and is familiar to the diagnosing professional, but may not be relevant, adequate, or accurate to understanding an individual's situation.
I suffered from serious--debilitating, even life-threatening--anxiety and depression throughout my school years, but concepts like "social anxiety" or "academic anxiety" are fairly shallow. A good therapist probably could have discovered and helped me with my core issues, but it was a lot easier for someone to just tell me I needed better "coping strategies" (when I didn't have the necessary emotional space provided by a basic sense of security to practice coping strategies, nor did I have sufficient understanding of my emotional states to figure out what I needed when) or prescribe a medication that was either useless or exacerbated my symptoms. Written guides on dealing with anxiety often assumed that symptoms included an elevated heart rate and the like, whereas in my case they tended to include lethargy and paralysis--basically the opposite. Everything I could find written on "conversion disorder", a diagnosis I heard a lot in my late teens, described a long-lasting loss of specific bodily function in a patient who usually denied that it was psychosomatic and insisted on finding a physical cause; I assumed from the beginning that my ever-changing, minutes-to-hours paralysis and loss-of-balance symptoms were psychosomatic. What actually helped was the social and economic security of a good job--not something I've ever seen proposed as a cure for anxiety and depression in young adults or adolescents.
As for autism, I don't think I meet the diagnostic criteria, but I do believe that I'm neurodivergent with a constellation of traits that no one's drawn a circle around and given a label. This leads to the anguish of falling in-between two black-and-white categories that don't really describe reality but that many people believe in and use as bars for accommodations or inclusion in certain communities--in this case, autistic and neurotypical, but a sensation I'm familiar with in other contexts as well.
3. It asserts and requires that the individuals it's speaking about fall outside the typical range on the metrics of diagnosis.
In some cases, an individual with a psychiatric diagnosis has a mind and abilities that are clearly very different from others in a way that impairs expected function in a capitalist society. These individuals tend to get called things like "floridly psychotic", "low-functioning autistic," or "shut-in." But then you can line up a whole group of people who experience things in common with these people and range from wildly successful (by some set of common societal standards) to completely "normal" to struggling but making it to unable to even think about employment. And then you see that of these people, where they fall on the line varies wildly dependent on situation, task, and what environment and supports they have. And then you look at yourself and/or the other "unaffected" people around you and realize that many of you struggle with some of the same challenges and have learned to deal with them and understand yourselves using lessons from these other people with a diagnosis.
An outgoing person with above-average self-confidence might struggle with social anxiety when they begin giving presentations at work--does this warrant a diagnosis? Why are we even asking that question? What messages do we give about managing one's own anxiety levels and understanding and responding to others' anxiety levels when those levels are in the average range or lower than it? Generally the "anxiety disorder" construct overshadows real understanding.
When I was a child, I saw ghosts and sensed terrifying "demons"--extrasensory hallucinations, often as I was falling asleep at night. I tried praying for help with the demons, but eventually I found that logic made my fear--and eventually my hallucinations--go away much more effectively. I have a strong motivation for not believing in the supernatural world, now, because I'm afraid doing so could send me further and further away from reality, though I've never been diagnosed with a psychotic disorder and don't generally struggle with such. And yet I once heard the story of a woman who was in and out of a psychiatric hospital whose psychotic breaks centered around religious delusions--and who achieved significant stabilization when she, like me, abandoned her religious beliefs in favor of more scientific rationality. How far apart are we, actually?
There are many additional psychological and neurological differences that are powerful tools for self-understanding that don't require one to be worse-than-average--but that seem less emphasized in our culture. For instance, exploring the concept of working memory can help in understanding one's own learning style as well as how to problem-solve with others whose brains work differently--regardless of how "good" or "bad" yours is.
Getting hung up on diagnostic judgment calls--and value judgments--just detracts from understanding how the same patterns operate in those who can be pathologized as well as those who can't, and maximizing the ability of research and observation to help us get along with ourselves and others.
4. It places responsibility for difficulties on the individual and not society.
Rumor is that a highly driven, highly talented, now-externally-successful student in my high school social group dropped out of high school after getting a doctor's note saying it was bad for him. Instead he pursued computer science interests on his own while taking community college classes and was in a PhD program before the rest of us had our undergrad degrees. But support in pursuing a better life is rarely the outcome of students being diagnosed with things that often correspond to "school is bad for you"--depression and anxiety can be caused by a bad environment; ADHD, ASD, and learning disabilities are often only classified as disorders because the education system's expectations are too rigid; schizophrenia and many already-mentioned diagnoses can result in school being a punishing experience.
When we send someone to therapy and/or put them on medication and don't change their environment even though changes to their environment could alleviate some or all of their problems, we're putting that person through additional hardship in order to perpetuate societal structures that are making other people suffer, as well. If someone can't work a 40+ hour week due to psychological limitations, should we be trying to medicate them or asking why a society overflowing with material goods requires such efforts before someone has access to a basic level of them? Or asking where the strain comes from--a cruel boss, absurd corporate standards like firing employees if a single customer complains, a workplace full of loud noises and flickering florescent lights?
...
People are very complicated things to understand, and what's helpful or not helpful in dealing with our issues is always going to be a difficult question that requires real engagement and suspension of judgment to make progress on. The answer to the same question isn't the same for everyone or in every context. Becoming rigidly invested in diagnostic frameworks--and, worse, in policing their boundaries and trying to enforce a certain idea of who and how many "should" be able to use that framework for accommodations and understanding--only impoverishes our ability to navigate the world. Instead we should walk lightly through the mazes of concepts about how people work, lingering wherever and only wherever actually sheds light on an issue at hand.
Note that I'm talking only about how we understand ourselves and each other, and not about how we decide who gets what treatments and accommodations--that's its own thorny issue. But those debates also need to be informed by the understanding that there actually isn't a clear line between people who "are" or "have" a certain diagnosis and those who don't, or between medical and social issues, or even between traits that are good, neutral, and bad. It isn't simple, and it's easier to deride those with an opposite ideological perspective from you than it is to actually untangle helpful from harmful courses of action in any individual case.
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