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.
Thursday, July 31, 2014
Came across a good post titled "Marginalized people are not revolution objects."
By writing this blog, I am trying to change the world for people like me who are suffering greatly not because our impairment requires it, but because no one's told us it's okay to live and work and date and go to doctor's appointments and hang out with friends and talk to family when we can't always mouthspeak. I have my own biases, both as a social justice type who's keen on disability acceptance, and as an individual who experiences conditions with common labels in very specific, sometimes idiosyncratic ways.
But no one else's opinions or choices are mine. If someone else with my same disability labels believes ardently in medical treatment and doesn't want to use alternate communication, their perspective is something for me to learn from and honor. (But most importantly it's their perspective and I have no right to an opinion on it if they don't want to have that discussion with me.)
As I write this blog, I'm trying to balance the ideological points I want so badly to get across because I think they can save other people very real suffering for very little if any cost, with the awareness that they are ideological points, and that promoting any one ideology runs the risk of erasing someone else's experiences and needs.
Monday, July 28, 2014
Forms of Mutism: Question-triggered
I listed several forms of partial mutism in this post. One was topic-specific mutism, and one was mutism triggering on questions with unclear answers. Recently I got to re-experience another pattern that's kind of a combo of the two: Full mutism triggering once someone asks a question.
In this case, I was asked a question that:
- Concerned something highly anxiety-provoking, unexpected to the asker
- Pitched me right into a swirl of doubts and conflicting feelings
- Had a very complex answer consisting of both unusually good things and unusually bad things, covering several intense days of varied emotions and experiences and their fallout
Once I had my mouthspeak back I was able to do this thing where I focus and exert effort to get myself to speak on the difficult topic and succeed--kind of like taking a big breath before taking the plunge. I told my partner the things that had me worried and said, "Now you know why I went mute when you asked me how my trip went," with a little laugh.
It interests me that I'm often able to mouthspeak calmly and well about something that made me mute after the fact--and this itself is an effective communication strategy as long as I'm managing the situation so I don't get pulled into something I don't want while I can't speak. Since I'm developing my relationship with my new significant other, being able to explain my communication status, what triggered it, and how it affected my behavior in the moment are all good things that help us work together going forward.
I'm confident that I can always, if necessary, extricate myself from the situation enough to get to a typing device and explain what's going on, but I don't automatically have to do so the moment I lose mouthspeak. I do still want my partner to know that I can't speak when I can't, so I should probably work out a hand symbol in that regard, but there's some sort of empowerment in knowing I can stand there having not said something important but confident that I will explain it in good time.
"Can't Talk Right Now" Card
These days I'm usually only mute around my significant other. Typing, gestures, writing, and him being aware enough to wait until I can speak again have made those occurrences mutism a mostly non-scary, non-frustrating thing. (There are some times when alternate communication is less convenient, out of reach, or ineffective.)
But that easiness has only made me more aware of the times when I need to type but don't feel comfortable just whipping out my phone and going at it. I don't know whether other people will wait for me to communicate with them or get impatient and/or angry--for example, a doctor could see me typing on my phone, think I'm texting, and walk away or yell at me.
I went to the dentist a couple weeks ago feeling good and not expecting to have any difficulties--I trusted this dentist and had no reason to think my teeth would be bad. Well, I got bad news about my dental health, bad news that was also confusing because it seemed like the dentist and hygienist both knew that I was at risk the year before but didn't mention it to me. The dentist was also much more abrupt and empathetic and didn't seem to want to spend time speaking to me compared to what I remembered. You could imagine this strained my ability to speak. Well, I managed to stutter out one of my questions to the dentist but couldn't say the rest--more thoughts on getting communication needs met in health care later, since it's a special situation, but it did remind me I'm not free from all danger living in a world that expects different abilities.
More recently and less majorly, I went to a social gathering and showed up mute. It was mainly my boyfriend's work friends, none of whom knew about my selective mutism unless I guess he's been disclosing more than I would want/expect him to about me. I think they can sense when there's something off about me but don't actually ask about it--I showed up to the same gathering another time unable to balance normally and having other sensory processing problems. I feel like they're giving me weird, wondering looks when stuff like this happens--or they could be looking at me normally and I'm self-conscious. In any case, this time when I couldn't speak, I kind of wanted to pull out my phone and explain what was going on--only I figured that wouldn't be a very effective means of communicating to a crowd (I don't know how to get the phone to read the text in a robot-voice yet). I ended up just getting my voice back after some work in the hall once my SO and I left.
Tonight I decided to do something that'll aid quick communication of my communication status in situations like that. I'm not sure whether I'd feel comfortable using it, but probably easier and less anxiety-producing than typing/writing/miming the details in the moment when I'm already not feeling 100% comfortable.
So, I wrote this on a card:
Can't Talk Right Now I'm a selective mute (arrow to other side) ---->Now it's in my wallet and will be available whenever I next need to come out to survive a situation! I'd advise something similar to other selective mutes if only because of super-high-risk possibilities like having to deal with police who might otherwise conclude we're uncooperative.
I may need:
- Something to type or write on
- Time to regain my voice
------------------------Please note that I may be able to say some things but not freely communicate something particularly important by speaking.Anxiety or tiredness may have triggered my mutism.
- Extra time to communicate either out loud or in writing
Monday, June 23, 2014
Wait, I'm suffering?
I'm poking around the internet trying to see what people are saying about selective mutism--hoping to find something positive, in fact. The domain "selectivemutism.org" belongs to the Selective Mutism Group, and I don't have anything major against them, but this language from their values/mission statement was disorienting to me:
shame disaster.
I may be reading too much into this, but I also think there's an implication in the second quoted sentence that selective mutism somehow stops us from "reach[ing] [our] full potential of personal growth and participation in society." For me, I've experienced the opposite--selective mutism has helped propel me to do things like read a personal monologue on stage to an audience of hundreds, ask dozens and dozens of people at a festival if they get consent before sex while tabling for rape prevention, and help NAMI give in-service trainings to teachers on childhood mental illness. Writing on whiteboards to professors in college because mouthspeak failed me was a form of vulnerability that increased our connection and ended up being an excellent accidental networking strategy--I can't say that social anxiety as a whole didn't damage my ability to form relationships during my school years, but selective mutism itself doesn't damage one's ability to make social connections.
You might be reading this and thinking, "What? But being unable to speak by definition keeps you from fully participating socially!"
My answer: "Only if you don't have a keyboard or anything to write with, or the people around you won't accept that form of communication, or you don't think the people around you would accept that form of communication." (Replace "keyboard or anything to write with" with non-mouthspeak communication form of your choice if desired.)
If a shy person can't get a word in edgewise, it's because they're surrounded by people who aren't trying to include them in the conversation. If it's socially unacceptable to communicate one's personal communication needs, it's because the dominant group has issues.
Personally, I think that schools and families should pay attention to whether or not a child is socially isolated, and then figure out how to get that child included. Maybe a more outgoing child who's of the nurturing mindset should be recruited as a mentor, or maybe there's an extracurricular activity the child can be involved in. Nonverbal communication should be explicitly accepted, and the child's opinions solicited. Adults should also be treated with similar consideration.
Decent people do this all the time in social settings. Someone notices that a discussion has been conducted between a few noisy people and walks over to a quiet person to ask them their thoughts. A group wants to go to a bar after a party, but one attendee's under 21, so everyone stops to discuss a mutually satisfactory compromise. Someone really wants to go to a meat-heavy restaurant, but their companion believes in animal rights and would be pale and nauseous just being there, so they go somewhere else instead. Growing up my needs and preferences weren't accommodated in this basic way, which I'm sure contributed greatly to my anxiety--I simply didn't expect a comfortable place to be made for me in society, so every next step was something to be feared.
In turns out I was wrong. I've reached a point in life where my needs are met by the people around me, most of the time, and my feelings and thoughts certainly matter to them. Yes, even (perhaps especially) my boss. Currently I still have some fears, even selective mutism related ones, prominently about whether or not doctors will accept typing as a means of communication. I've usually been damagingly semi-speaking around them, so that I'd answer tersely or tell them what I thought they wanted to hear because I was too anxious to be honest, and they were too dismissive/rushed to relate to me in a way that would help me reach the truth. But if they won't accept typing or otherwise react negatively to it? That's not me suffering from selective mutism. That's me suffering from prejudice.
I'll end on a quote from someone whose words have empowered me more than any therapist: Alyssa of Yes, That Too:
SMG exists because of a belief in the social responsibility to bring about progress for all individuals who suffer from selective mutism. We believe that there is an obligation to foster awareness and understanding so that children, adolescents and adults affected by selective mutism will have access to the help they need to overcome their anxiety and reach their full potential of personal growth and participation in society.Personally I'm not suffering from selective mutism right now, I'm enjoying it--ecstatically embracing the chance to finally communicate at critical moments via typing rather than mouthspeak, knowing that doing so puts me in the middle of a proud and loving disability rights movement. I suspect this organization is doing many great things for my fellow selective mutes, but implying that we "suffer" from our communication needs is not one of them. It seems like it would only encourage (at least some of) us to feel stigmatized/embarrassed/unsafe using accessible communication techniques, which is a
I may be reading too much into this, but I also think there's an implication in the second quoted sentence that selective mutism somehow stops us from "reach[ing] [our] full potential of personal growth and participation in society." For me, I've experienced the opposite--selective mutism has helped propel me to do things like read a personal monologue on stage to an audience of hundreds, ask dozens and dozens of people at a festival if they get consent before sex while tabling for rape prevention, and help NAMI give in-service trainings to teachers on childhood mental illness. Writing on whiteboards to professors in college because mouthspeak failed me was a form of vulnerability that increased our connection and ended up being an excellent accidental networking strategy--I can't say that social anxiety as a whole didn't damage my ability to form relationships during my school years, but selective mutism itself doesn't damage one's ability to make social connections.
You might be reading this and thinking, "What? But being unable to speak by definition keeps you from fully participating socially!"
My answer: "Only if you don't have a keyboard or anything to write with, or the people around you won't accept that form of communication, or you don't think the people around you would accept that form of communication." (Replace "keyboard or anything to write with" with non-mouthspeak communication form of your choice if desired.)
If a shy person can't get a word in edgewise, it's because they're surrounded by people who aren't trying to include them in the conversation. If it's socially unacceptable to communicate one's personal communication needs, it's because the dominant group has issues.
Personally, I think that schools and families should pay attention to whether or not a child is socially isolated, and then figure out how to get that child included. Maybe a more outgoing child who's of the nurturing mindset should be recruited as a mentor, or maybe there's an extracurricular activity the child can be involved in. Nonverbal communication should be explicitly accepted, and the child's opinions solicited. Adults should also be treated with similar consideration.
Decent people do this all the time in social settings. Someone notices that a discussion has been conducted between a few noisy people and walks over to a quiet person to ask them their thoughts. A group wants to go to a bar after a party, but one attendee's under 21, so everyone stops to discuss a mutually satisfactory compromise. Someone really wants to go to a meat-heavy restaurant, but their companion believes in animal rights and would be pale and nauseous just being there, so they go somewhere else instead. Growing up my needs and preferences weren't accommodated in this basic way, which I'm sure contributed greatly to my anxiety--I simply didn't expect a comfortable place to be made for me in society, so every next step was something to be feared.
In turns out I was wrong. I've reached a point in life where my needs are met by the people around me, most of the time, and my feelings and thoughts certainly matter to them. Yes, even (perhaps especially) my boss. Currently I still have some fears, even selective mutism related ones, prominently about whether or not doctors will accept typing as a means of communication. I've usually been damagingly semi-speaking around them, so that I'd answer tersely or tell them what I thought they wanted to hear because I was too anxious to be honest, and they were too dismissive/rushed to relate to me in a way that would help me reach the truth. But if they won't accept typing or otherwise react negatively to it? That's not me suffering from selective mutism. That's me suffering from prejudice.
I'll end on a quote from someone whose words have empowered me more than any therapist: Alyssa of Yes, That Too:
It bothers me when people think of including people as above and beyond because if it's above and beyond, it's not expected. It needs to be expected. Not just for the kid I taught to throw forehand siting down today: his leg will heal. For everyone. Disability is part of the human experience, and the way we live needs to reflect that. People with disabilities need to be able to participate, and the question shouldn't be "Can this person participate?" but "How can this person participate?" - See more at: http://yesthattoo.blogspot.com/2013/06/that-wasnt-being-superstar-no-really.html#sthash.K3CYU8NM.dpuf
Sunday, June 22, 2014
Things I want you to know about selective mutism
1. Finding and using effective means of communication is far more important than being able to mouthspeak.
I can mouthspeak almost all the time nowadays, so much so that my coworkers and casual friends don't have any idea I'm a selective mute. But I still can't tell my doctor all my health concerns or my lover all my sexual worries and needs via mouthspeak--and worse, in high-stress situations like these I can often fumble out some mouthspeak, just not the things I really need to say, maybe even their opposite. That can result in serious emotional and/or physical injury.
The most important thing I've learned this year is that I can reliably communicate via typing in those situations instead. I can't underestimate how important this is. It removed so much very, very real fear from my life, and has made having a non-traumatic relationship possible.
If you or a loved one has recently started losing speech, I don't want you to jump straight to getting it back even if you can. I want you to know how to communicate without it because then you'll be prepared for anything, whether it recurs or not.
2. Ability to speak in a situation isn't all or nothing.
I'm not the only selective mute who sometimes can't speak at all--but has also had other levels, like:
-Inability to speak except to agree with someone else. I've had some really weird phone calls and other conversations with service people who had to guess what I wanted while I ended up agreeing to something completely unrelated because I had no other choice.
-Ability to speak about anything as long as I don't disagree or say something that I fear would displease the other person. This one's really bad in bed.
-Ability to speak and sound normal as long as I don't talk about a certain topic, like sex.
-Ability to speak somewhat but generally just say noncommittal things, like "Maybe," or "I don't know." Also might be able to give a hasty, marginally correct answer like, "Yes" when really it should be a lot more complicated.
-Complete inability to speak unless asked a direct question. I went to elaborate lengths to come out when I was 15 by dressing in such a way that my fellow high schoolers would ask me about my sexual orientation, since I was unable to initiate conversation with them normally.
-Difficulty speaking when asked a direct question that's unclear or makes false assumptions. "Do you want beer or a cocktail?" might provoke silence or a bunch of "Uhhs" if the answer is "I don't drink."
For me this comic was a revelation: Par la Fenetre -- Today's #1 scary thought on anxiety level
It has an anxiety level scale labeled "Inability to speak at all," "Inability to communicate feelings," and "Inability to say 'no'". I think if everyone knew these different levels of mutism were possible and looked for them in critical situations, my life would've gone so much better. As it is, I've spent years building up my ability to communicate that I have these difficulties and work around them (typing--I can't sell it enough).
I think everyone dealing with these levels of partial communication needs to learn to explain them, or just get a card to hand out that explains them. It's part of what we need to keep ourselves safe. Us explaining isn't nearly enough--we need to have people who are actively engaged in working past our communication barriers and looking for warning signs that we might have just agreed to something without meaning it--but it's a huge step forward.
I can mouthspeak almost all the time nowadays, so much so that my coworkers and casual friends don't have any idea I'm a selective mute. But I still can't tell my doctor all my health concerns or my lover all my sexual worries and needs via mouthspeak--and worse, in high-stress situations like these I can often fumble out some mouthspeak, just not the things I really need to say, maybe even their opposite. That can result in serious emotional and/or physical injury.
The most important thing I've learned this year is that I can reliably communicate via typing in those situations instead. I can't underestimate how important this is. It removed so much very, very real fear from my life, and has made having a non-traumatic relationship possible.
If you or a loved one has recently started losing speech, I don't want you to jump straight to getting it back even if you can. I want you to know how to communicate without it because then you'll be prepared for anything, whether it recurs or not.
2. Ability to speak in a situation isn't all or nothing.
I'm not the only selective mute who sometimes can't speak at all--but has also had other levels, like:
-Inability to speak except to agree with someone else. I've had some really weird phone calls and other conversations with service people who had to guess what I wanted while I ended up agreeing to something completely unrelated because I had no other choice.
-Ability to speak about anything as long as I don't disagree or say something that I fear would displease the other person. This one's really bad in bed.
-Ability to speak and sound normal as long as I don't talk about a certain topic, like sex.
-Ability to speak somewhat but generally just say noncommittal things, like "Maybe," or "I don't know." Also might be able to give a hasty, marginally correct answer like, "Yes" when really it should be a lot more complicated.
-Complete inability to speak unless asked a direct question. I went to elaborate lengths to come out when I was 15 by dressing in such a way that my fellow high schoolers would ask me about my sexual orientation, since I was unable to initiate conversation with them normally.
-Difficulty speaking when asked a direct question that's unclear or makes false assumptions. "Do you want beer or a cocktail?" might provoke silence or a bunch of "Uhhs" if the answer is "I don't drink."
For me this comic was a revelation: Par la Fenetre -- Today's #1 scary thought on anxiety level
It has an anxiety level scale labeled "Inability to speak at all," "Inability to communicate feelings," and "Inability to say 'no'". I think if everyone knew these different levels of mutism were possible and looked for them in critical situations, my life would've gone so much better. As it is, I've spent years building up my ability to communicate that I have these difficulties and work around them (typing--I can't sell it enough).
I think everyone dealing with these levels of partial communication needs to learn to explain them, or just get a card to hand out that explains them. It's part of what we need to keep ourselves safe. Us explaining isn't nearly enough--we need to have people who are actively engaged in working past our communication barriers and looking for warning signs that we might have just agreed to something without meaning it--but it's a huge step forward.
Hello, World!
I'm a 20-something professional who can't always speak.
Until earlier this year, that was a hidden weakness that could shatter me into pieces. I couldn't say things like "No, I'm not in the mood," or "Use a condom."
Then I discovered Autistic blogs and discussions online where other people who can't always mouthspeak talked about using alternate means of communication--often as simple as whipping out a smartphone or carrying a laptop around to talk.
The simple grace of their example is the freedom of my soul. I want to shout it from the rooftops, but I'm a selective mute so I'll blog about it instead.
Selective mutism, though a diagnosable condition on its own, is pretty clearly one manifestation of larger patterns of being in the world. I won't say that it's a symptom of an anxiety disorder because (1) I think that's only one lens that captures only part of the phenomenon, at least for me, and (2) I don't think having different communication needs/strengths is actually a problem--rather, the problem arises when those around the person don't respect those needs or allow them different ways.
So, what are my larger patterns?
I'm a 20-something professional who can't always move. When this was frequent and severely limiting me, in late high school and college, I heard the words "conversion disorder" as well as "depression with catatonic and vegetative symptoms." Since conversion disorder's in the anxiety category, that's more accurate in some sense, but again I think that's also only part of the phenomenon. I think my brain just can't always handle as much activity and emotion and sensory stimuli as I put it through, and uses some degree of catatonia as a way of giving me space to recover.
I had unbearable anxiety most of the time I was in school, usually paired with depression. No, really, my mother says I was a happy child until my personality completely changed, she thinks around the time I started school. Graduating from college into a stable job was the best thing that ever happened to my mental health. My anxiety was both academic and social, intensified by severely inadequate emotional support at home and inheritance by gene and example. Various symptoms of anxiety left their own long-lasting wounds, and I struggled for so many years.
I may or may not be on the autistic spectrum, but I'm definitely neurodivergent and indebted to the activism of my neurokin.
I am currently passing as both mentally and physically able, which can be almost the same thing as being nondisabled, but the gap there's significant. At the very least, I know that I am balanced precariously on the border between "functioning" by society's requirements and being unable to meet those norms that happen to entitle people to things like housing, food, and human dignity, so disability rights struggles are my own.
More? Well, you'll have to read this blog.
Until earlier this year, that was a hidden weakness that could shatter me into pieces. I couldn't say things like "No, I'm not in the mood," or "Use a condom."
Then I discovered Autistic blogs and discussions online where other people who can't always mouthspeak talked about using alternate means of communication--often as simple as whipping out a smartphone or carrying a laptop around to talk.
The simple grace of their example is the freedom of my soul. I want to shout it from the rooftops, but I'm a selective mute so I'll blog about it instead.
Selective mutism, though a diagnosable condition on its own, is pretty clearly one manifestation of larger patterns of being in the world. I won't say that it's a symptom of an anxiety disorder because (1) I think that's only one lens that captures only part of the phenomenon, at least for me, and (2) I don't think having different communication needs/strengths is actually a problem--rather, the problem arises when those around the person don't respect those needs or allow them different ways.
So, what are my larger patterns?
I'm a 20-something professional who can't always move. When this was frequent and severely limiting me, in late high school and college, I heard the words "conversion disorder" as well as "depression with catatonic and vegetative symptoms." Since conversion disorder's in the anxiety category, that's more accurate in some sense, but again I think that's also only part of the phenomenon. I think my brain just can't always handle as much activity and emotion and sensory stimuli as I put it through, and uses some degree of catatonia as a way of giving me space to recover.
I had unbearable anxiety most of the time I was in school, usually paired with depression. No, really, my mother says I was a happy child until my personality completely changed, she thinks around the time I started school. Graduating from college into a stable job was the best thing that ever happened to my mental health. My anxiety was both academic and social, intensified by severely inadequate emotional support at home and inheritance by gene and example. Various symptoms of anxiety left their own long-lasting wounds, and I struggled for so many years.
I may or may not be on the autistic spectrum, but I'm definitely neurodivergent and indebted to the activism of my neurokin.
I am currently passing as both mentally and physically able, which can be almost the same thing as being nondisabled, but the gap there's significant. At the very least, I know that I am balanced precariously on the border between "functioning" by society's requirements and being unable to meet those norms that happen to entitle people to things like housing, food, and human dignity, so disability rights struggles are my own.
More? Well, you'll have to read this blog.
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