Why Self-Diagnosis is Important - A Response to kellyann-graceful-warrior
(Note: I don't actually know which pronouns either of the people I'm discussing here actually use. I'm guessing both (Purr)ple (L)ace and kellyann-graceful-warrior use she/her pronouns, but if I've guessed wrong, just let me know and I'll edit this.)
I was browsing (Purr)ple (L)ace recently, and came across this thread. (Note: I made the mistake of thinking she agreed with it, because I didn't realize that she responded in her tags rather than in text. She doesn't.)
But in any case, I feel a strong desire to respond to this, so I will.
Kellyann's first argument seems to be that self-diagnosis is prone to error. Which is true. But a) so are official diagnoses, b) misindentifying yourself doesn't mean that you shouldn't have been looking for answers at all (imagine if we took the same attitude to gender and sexual orientation?), and c) just because you've misidentified doesn't mean you can't find stuff that helps you aimed at people with that diagnosis. I'm autistic, not ADHD (seriously, I've had dozens of psychologists say I'm not ADHD, because my school really really wanted me to get that diagnosis). But I've found a pile of ADHD advice that has helped me too, because ADHD and autism overlap.
Her next argument is that badly behaved people who use self-diagnoses as excuses give actually diagnosed people a bad name. To which I point out that actually diagnosed people can behave badly and use their diagnoses as excuses too. And that "you're giving us a bad name" places the blame on the wrong target - the real problem lies with people who assume that one member of [insert minority X] must represent every single person belonging to that minority group. If someone goes "I met a really shitty person with BPD who used it to excuse abuse, ergo all BPDs are shitty abusers", that's pretty much the same thing as saying "I met a transphobic and homophobic asexual who slut-shamed and considered themselves superior, ergo all asexuals are transphobic homophobic sult-shamers who think they're superior". Essentially it doesn't even matter if the person they met was accurately identified or not - the problem lies with the person who stereotypes a whole group based on one person.
Secondly, she talks about how complicated it is for psychologists and psychiatrists to actually diagnose someone. As a psych major, I can tell you - it's really not as complicated as people think. It's nothing like physical medicine, because the vast majority of diagnoseable mental conditions aren't based on running tests or determining causes or anything other than just, yes, checking the person against a checklist. (Yes, there are a few diagnoses that are more complicated, such as MR, which requires an IQ test. But those are the minority.) The DSM is designed so that you can use it to diagnose someone and know you're using the same definition of that condition as someone else is using, even if you come from very different backgrounds (i.e. a psychologist who regularly does outpatient treatment should use the same diagnostic standards as a pediatrician whose only experience with mental health came from their mandatory psychiatry rotation during medical school). It doesn't always work as intended, but that's what it's for. And as such, it's really not that big of a stretch to consider an untrained but well-read person using the same criteria and coming up with a similar level of accuracy.
Next, she complains about people diagnosing things that shouldn't be possible or are very unlikely, such as mutually exclusive diagnoses, extremely rare ones, or conditions that have age restrictions.
First, she makes a factual error here. The only personality disorder with an age restriction is antisocial personality disorder, and that's because ASPD and conduct disorder are basically the exact same condition at different ages, and someone under 18 with the symptoms of ASPD should be diagnosed with CD instead. (ASPD also requires that you met CD criteria before you turned 18.) All other personality disorders can be diagnosed in teenagers according to DSM rules, although many clinicians refuse to do so out of fear of stigma or because they overextended the ASPD rules by mistake. I did a couple papers for one of my classes on teenage BPD recently, and I know for a fact that the research finds the exact same validity and stability for BPD criteria in teens as in adults. What little I've read suggests similar findings for other PDs, too, except for ASPD. (There's a major subgroup of CD individuals who have CD/ASPD symptoms only in their teens and early twenties and transition to completely different symptoms with age, which is one big reason why ASPD has an age restriction.) So, yes, teenagers can absolutely have personality disorders.
Secondly, not all mutual exclusions in the DSM actually are warranted. For example, up until DSM 5, ADHD couldn't be diagnosed in autistic people, because it was assumed that ADHD symptoms could be explained by autism. However, research showed that children who had both ADHD and autism symptoms were different from autistic kids without ADHD, in similar ways to how allistic ADHD kids differed from NTs, and that ADHD symptoms in autistic kids were helped by ADHD treatments just as much as in allistic kids. For example, stimulant meds do nothing to help autistic kids without ADHD, but were just as beneficial in autistic ADHD kids as in allistic ADHD kids. Based on those findings, the DSM 5 removed that restriction. Before this happened, I knew several autistic people with self-diagnosed ADHD, or ADHD diagnosed by clinicians who ignored that restriction, who were benefiting from knowing why they differed from non-ADHD autistic people. Similarly, I'd support ignoring the mutually exclusion rule for reactive attachment disorder and autism, because the research really doesn't support the idea that it's impossible to tell if someone has RAD when they're autistic. Even bipolar disorder and depression could potentially co-occur, judging from cases where a person with well-controlled BP continued to have depressive episodes and then responded well to having an antidepressant or CBT added to their existing mood-stabilizer. (Note: Clinicians should never give a BP person an antidepressant if they aren't already responding well to a mood stabilizer, because it can trigger manic episodes.) And as for the schizophrenia/schizoaffective/bipolar mess, that's mostly historical, and schizoaffective is basically just a fancy name for someone with both schizophrenia and bipolar disorder.
Thirdly, regarding rare conditions (like early-onset schizophrenia), rare doesn't mean nonexistent. There's certainly at least some people with early-onset schizophrenia online, and that random Tumblr user could be among them. You really can't tell.
And fourthly, controversial conditions are still diagnosed. Maybe some of them should be scrapped (personally I don't think histrionic PD is meaningfully distinct from BPD and narcissistic PD, for example), but that doesn't mean that people can't find something useful from identifying themselves in those criteria.
Next, she points out that you can learn to understand yourself, help yourself, and advocate for yourself without self-diagnosing. Which is true. I certainly have benefited from recognizing that I have BPD traits and adopting strategies that people with BPD use, such as DBT, even though I don't actually meet the criteria for BPD. But labels, even self-applied labels, do have a purpose, for several reasons:
a) They remind you that you're not alone, and help you find people like you. If I didn't know that I'm autistic, I might still know that I can't handle loud noises, have trouble reading people, can't look after myself as well as most adults, and so forth. But how would I go about finding people like me? How would I input that mess of traits into a search engine? Having a single label that covers all that stuff is really useful.
b) They can be used to communicate to others. When I was a kid saying "I can't do that, I don't know why", no one listened. Now, when I say "I can't do that because I'm autistic", people listen. Not everyone, because ableism, but a whole lot more than they used to. I've had people literally shut up and apologize as soon as I invoked autism as an explanation for the thing they didn't like about me. Can this be misused? Sure. But it can also be used appropriately, and it can be very empowering and useful.
c) They can help you accept yourself. When I just "thought I might be autistic", there was always this doubt in the back of my mind, telling me "you're not autistic, you're just lazy/stupid/inconsiderate". Getting my official diagnosis silenced that voice, and self-diagnosis can do that too. Whatever lets you trip the line from uncertainty to certainty, that's a powerful cure for the Imposter Syndrome.
d) They can help you plan. Realizing I'm autistic was instrumental in realizing that me being able to live independently as an adult was not a given. I've heard horror stories from autistics with similar difficulties to me, who jumped into adult life without any idea that they wouldn't just figure it out on their own like NTs do. There are autistic people who have starved, who have ended up homeless, who've had homes so messy they were unsafe to live in, etc, all because they were expected to function as well in adaptive living as they do cognitively. If I hadn't heard those stories as a teenager, that could have been me. I could have jumped into independent living assuming I could do it, when I really can't, and ended up in dangerous circumstances as a result. Instead, because I know I'm autistic, I'm planning it out carefully, assessing my own abilities regularly, and working on safety nets so my first forays into independent living don't end in disaster. I'm also planning for the possibility that I might never live independently, and figuring out what I'll do when I outlive my parents.
Essentially, self-diagnosed labels can be useful for all the same reasons that gender and orientation labels are. So you can find people like you, communicate who you are to others, accept yourself, and plan for future possibilities that diverge from the normative path.
Next, she says it's unhealthy to self-diagnose. I'm not sure exactly why - this section seems to throw out a bunch of facts without really tying them together into a real argument, as far as I can tell. I can say that I don't really get what self-diagnosis has to do with denial, or why teenagers searching for identity means they can't figure out something real about themselves. (After all, many people correctly identify gender and orientation in their teens.)
Then, she returns to the "giving us a bad name" argument, which I've already responded to, and also claims that self-diagnosed people are spreading mockery. It's not entirely clear to me whether she's complaining about people mocking self-diagnosed people (which really isn't their fault - being mocked by someone else is never your fault) or claiming the self-diagnosed people themselves are mocking people who actually have that condition. The latter would be a bad thing, if it was actually that person's motivation, but I'm not convinced that it really applies to more than a tiny minority of self-diagnosed people. Just as people who claim to sexually identify as "attack helicopters" are a tiny minority among people who claim nonbinary identities, and shouldn't be taken as representative of actual nonbinary people, people who claim a self-diagnosis purely to mock people should also not be taken as representative of actual officially diagnosed or self-diagnosed people.
Lastly, she comments on arguments regarding access to diagnostic services by claiming that similar barriers have applied to her in the past. Which really doesn't negate that argument, any more than a rich person who grew up poor and thinks other poor people should do what they did negates the argument that poverty is a real problem that restricts people's opportunities. And while the resources she linked to do sound useful, they're not necessarily accessible to everyone - eg teenagers with unsupportive parents and no means of independent transport, people who live in rural areas or cities that lack those resources, people who need a kind of help that isn't what their local free clinics provide (for example a lot of free counseling centers only provide CBT, which doesn't work for everyone), people who get turned away or put on waiting lists, people who've been saddled with incompetent clinicians, and many others. Access to treatment is a tricky problem and it's not solved just by having a few free clinics.
And then there are people who don't want an official diagnosis. Maybe they risk facing stigma, or being barred access or having reduced access to something important to them. (For example, military service or adopting a child.) Maybe they don't want to see a clinician. Maybe they don't actually need help, or don't want to change what makes them different from others. Those can all be perfectly valid reasons not to seek a diagnosis, and none of those necessarily mean the person can't benefit from a self-diagnosis.
I was browsing (Purr)ple (L)ace recently, and came across this thread. (Note: I made the mistake of thinking she agreed with it, because I didn't realize that she responded in her tags rather than in text. She doesn't.)
But in any case, I feel a strong desire to respond to this, so I will.
Kellyann's first argument seems to be that self-diagnosis is prone to error. Which is true. But a) so are official diagnoses, b) misindentifying yourself doesn't mean that you shouldn't have been looking for answers at all (imagine if we took the same attitude to gender and sexual orientation?), and c) just because you've misidentified doesn't mean you can't find stuff that helps you aimed at people with that diagnosis. I'm autistic, not ADHD (seriously, I've had dozens of psychologists say I'm not ADHD, because my school really really wanted me to get that diagnosis). But I've found a pile of ADHD advice that has helped me too, because ADHD and autism overlap.
Her next argument is that badly behaved people who use self-diagnoses as excuses give actually diagnosed people a bad name. To which I point out that actually diagnosed people can behave badly and use their diagnoses as excuses too. And that "you're giving us a bad name" places the blame on the wrong target - the real problem lies with people who assume that one member of [insert minority X] must represent every single person belonging to that minority group. If someone goes "I met a really shitty person with BPD who used it to excuse abuse, ergo all BPDs are shitty abusers", that's pretty much the same thing as saying "I met a transphobic and homophobic asexual who slut-shamed and considered themselves superior, ergo all asexuals are transphobic homophobic sult-shamers who think they're superior". Essentially it doesn't even matter if the person they met was accurately identified or not - the problem lies with the person who stereotypes a whole group based on one person.
Secondly, she talks about how complicated it is for psychologists and psychiatrists to actually diagnose someone. As a psych major, I can tell you - it's really not as complicated as people think. It's nothing like physical medicine, because the vast majority of diagnoseable mental conditions aren't based on running tests or determining causes or anything other than just, yes, checking the person against a checklist. (Yes, there are a few diagnoses that are more complicated, such as MR, which requires an IQ test. But those are the minority.) The DSM is designed so that you can use it to diagnose someone and know you're using the same definition of that condition as someone else is using, even if you come from very different backgrounds (i.e. a psychologist who regularly does outpatient treatment should use the same diagnostic standards as a pediatrician whose only experience with mental health came from their mandatory psychiatry rotation during medical school). It doesn't always work as intended, but that's what it's for. And as such, it's really not that big of a stretch to consider an untrained but well-read person using the same criteria and coming up with a similar level of accuracy.
Next, she complains about people diagnosing things that shouldn't be possible or are very unlikely, such as mutually exclusive diagnoses, extremely rare ones, or conditions that have age restrictions.
First, she makes a factual error here. The only personality disorder with an age restriction is antisocial personality disorder, and that's because ASPD and conduct disorder are basically the exact same condition at different ages, and someone under 18 with the symptoms of ASPD should be diagnosed with CD instead. (ASPD also requires that you met CD criteria before you turned 18.) All other personality disorders can be diagnosed in teenagers according to DSM rules, although many clinicians refuse to do so out of fear of stigma or because they overextended the ASPD rules by mistake. I did a couple papers for one of my classes on teenage BPD recently, and I know for a fact that the research finds the exact same validity and stability for BPD criteria in teens as in adults. What little I've read suggests similar findings for other PDs, too, except for ASPD. (There's a major subgroup of CD individuals who have CD/ASPD symptoms only in their teens and early twenties and transition to completely different symptoms with age, which is one big reason why ASPD has an age restriction.) So, yes, teenagers can absolutely have personality disorders.
Secondly, not all mutual exclusions in the DSM actually are warranted. For example, up until DSM 5, ADHD couldn't be diagnosed in autistic people, because it was assumed that ADHD symptoms could be explained by autism. However, research showed that children who had both ADHD and autism symptoms were different from autistic kids without ADHD, in similar ways to how allistic ADHD kids differed from NTs, and that ADHD symptoms in autistic kids were helped by ADHD treatments just as much as in allistic kids. For example, stimulant meds do nothing to help autistic kids without ADHD, but were just as beneficial in autistic ADHD kids as in allistic ADHD kids. Based on those findings, the DSM 5 removed that restriction. Before this happened, I knew several autistic people with self-diagnosed ADHD, or ADHD diagnosed by clinicians who ignored that restriction, who were benefiting from knowing why they differed from non-ADHD autistic people. Similarly, I'd support ignoring the mutually exclusion rule for reactive attachment disorder and autism, because the research really doesn't support the idea that it's impossible to tell if someone has RAD when they're autistic. Even bipolar disorder and depression could potentially co-occur, judging from cases where a person with well-controlled BP continued to have depressive episodes and then responded well to having an antidepressant or CBT added to their existing mood-stabilizer. (Note: Clinicians should never give a BP person an antidepressant if they aren't already responding well to a mood stabilizer, because it can trigger manic episodes.) And as for the schizophrenia/schizoaffective/bipolar mess, that's mostly historical, and schizoaffective is basically just a fancy name for someone with both schizophrenia and bipolar disorder.
Thirdly, regarding rare conditions (like early-onset schizophrenia), rare doesn't mean nonexistent. There's certainly at least some people with early-onset schizophrenia online, and that random Tumblr user could be among them. You really can't tell.
And fourthly, controversial conditions are still diagnosed. Maybe some of them should be scrapped (personally I don't think histrionic PD is meaningfully distinct from BPD and narcissistic PD, for example), but that doesn't mean that people can't find something useful from identifying themselves in those criteria.
Next, she points out that you can learn to understand yourself, help yourself, and advocate for yourself without self-diagnosing. Which is true. I certainly have benefited from recognizing that I have BPD traits and adopting strategies that people with BPD use, such as DBT, even though I don't actually meet the criteria for BPD. But labels, even self-applied labels, do have a purpose, for several reasons:
a) They remind you that you're not alone, and help you find people like you. If I didn't know that I'm autistic, I might still know that I can't handle loud noises, have trouble reading people, can't look after myself as well as most adults, and so forth. But how would I go about finding people like me? How would I input that mess of traits into a search engine? Having a single label that covers all that stuff is really useful.
b) They can be used to communicate to others. When I was a kid saying "I can't do that, I don't know why", no one listened. Now, when I say "I can't do that because I'm autistic", people listen. Not everyone, because ableism, but a whole lot more than they used to. I've had people literally shut up and apologize as soon as I invoked autism as an explanation for the thing they didn't like about me. Can this be misused? Sure. But it can also be used appropriately, and it can be very empowering and useful.
c) They can help you accept yourself. When I just "thought I might be autistic", there was always this doubt in the back of my mind, telling me "you're not autistic, you're just lazy/stupid/inconsiderate". Getting my official diagnosis silenced that voice, and self-diagnosis can do that too. Whatever lets you trip the line from uncertainty to certainty, that's a powerful cure for the Imposter Syndrome.
d) They can help you plan. Realizing I'm autistic was instrumental in realizing that me being able to live independently as an adult was not a given. I've heard horror stories from autistics with similar difficulties to me, who jumped into adult life without any idea that they wouldn't just figure it out on their own like NTs do. There are autistic people who have starved, who have ended up homeless, who've had homes so messy they were unsafe to live in, etc, all because they were expected to function as well in adaptive living as they do cognitively. If I hadn't heard those stories as a teenager, that could have been me. I could have jumped into independent living assuming I could do it, when I really can't, and ended up in dangerous circumstances as a result. Instead, because I know I'm autistic, I'm planning it out carefully, assessing my own abilities regularly, and working on safety nets so my first forays into independent living don't end in disaster. I'm also planning for the possibility that I might never live independently, and figuring out what I'll do when I outlive my parents.
Essentially, self-diagnosed labels can be useful for all the same reasons that gender and orientation labels are. So you can find people like you, communicate who you are to others, accept yourself, and plan for future possibilities that diverge from the normative path.
Next, she says it's unhealthy to self-diagnose. I'm not sure exactly why - this section seems to throw out a bunch of facts without really tying them together into a real argument, as far as I can tell. I can say that I don't really get what self-diagnosis has to do with denial, or why teenagers searching for identity means they can't figure out something real about themselves. (After all, many people correctly identify gender and orientation in their teens.)
Then, she returns to the "giving us a bad name" argument, which I've already responded to, and also claims that self-diagnosed people are spreading mockery. It's not entirely clear to me whether she's complaining about people mocking self-diagnosed people (which really isn't their fault - being mocked by someone else is never your fault) or claiming the self-diagnosed people themselves are mocking people who actually have that condition. The latter would be a bad thing, if it was actually that person's motivation, but I'm not convinced that it really applies to more than a tiny minority of self-diagnosed people. Just as people who claim to sexually identify as "attack helicopters" are a tiny minority among people who claim nonbinary identities, and shouldn't be taken as representative of actual nonbinary people, people who claim a self-diagnosis purely to mock people should also not be taken as representative of actual officially diagnosed or self-diagnosed people.
Lastly, she comments on arguments regarding access to diagnostic services by claiming that similar barriers have applied to her in the past. Which really doesn't negate that argument, any more than a rich person who grew up poor and thinks other poor people should do what they did negates the argument that poverty is a real problem that restricts people's opportunities. And while the resources she linked to do sound useful, they're not necessarily accessible to everyone - eg teenagers with unsupportive parents and no means of independent transport, people who live in rural areas or cities that lack those resources, people who need a kind of help that isn't what their local free clinics provide (for example a lot of free counseling centers only provide CBT, which doesn't work for everyone), people who get turned away or put on waiting lists, people who've been saddled with incompetent clinicians, and many others. Access to treatment is a tricky problem and it's not solved just by having a few free clinics.
And then there are people who don't want an official diagnosis. Maybe they risk facing stigma, or being barred access or having reduced access to something important to them. (For example, military service or adopting a child.) Maybe they don't want to see a clinician. Maybe they don't actually need help, or don't want to change what makes them different from others. Those can all be perfectly valid reasons not to seek a diagnosis, and none of those necessarily mean the person can't benefit from a self-diagnosis.
posted by Ettina at 5:22 PM
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