How well-founded or useful are neurodivergent categories?
March 15, 2023 4:58 AM Subscribe
Before deciding whether to seek formal diagnosis, I’ve been listing my outlier traits, reading up, taking self-assessments online, and looking at diagnosis Venn diagrams like these. That process has led me to skepticism about the diagnoses themselves. How scientifically well-founded are they?
I’ve started to think that a few decades from now, scientists may look back on these diagnoses as primitive and misguided, the way we now see hysteria diagnoses from the 19th century. Here’s my thinking. If the diagnoses are well-founded entities, I’d think that most neurodivergent people’s outlier traits would fall mostly within one circle, or more than one if they have multiple diagnoses. E.g., patterns like the ones on the top of this page I sketched.
If on the other hand, the diagnoses are poor hypotheses, I’d expect most neurodivergent people’s outlier traits to map to them erratically, e.g., a pattern like the last one on that page I sketched. Mine are like that. Similarly, on self-assessments, I don't get a strongly diagnostic result or an Aha! level of fit for any particular diagnosis (like autism, OCPD, “highly sensitive,” etc.), but my scores are just above or below borderline on a number of them, and I also have a lot of other outlier traits that I think collectively indicate… something – but that aren’t captured on the assessments or in the Venns.
Do diagnosis definitions hold up better than that for most neurodivergent people? Are the discrete diagnoses well-founded in good science, like a genetic basis or a strong cluster analysis or something? Or are they kind of hand-wavey descriptions that influential thinkers have generated and that have been adopted (for now) without conclusive scrutiny of whether they stand up as discrete, useful entities?
I think I might be working my way towards posting a more personal or specific question about my neurodivergence in particular, reasons I’d consider assessment, and whether it’s a good idea for me, but I wanted to start with this more foundational one.
I’ve started to think that a few decades from now, scientists may look back on these diagnoses as primitive and misguided, the way we now see hysteria diagnoses from the 19th century. Here’s my thinking. If the diagnoses are well-founded entities, I’d think that most neurodivergent people’s outlier traits would fall mostly within one circle, or more than one if they have multiple diagnoses. E.g., patterns like the ones on the top of this page I sketched.
If on the other hand, the diagnoses are poor hypotheses, I’d expect most neurodivergent people’s outlier traits to map to them erratically, e.g., a pattern like the last one on that page I sketched. Mine are like that. Similarly, on self-assessments, I don't get a strongly diagnostic result or an Aha! level of fit for any particular diagnosis (like autism, OCPD, “highly sensitive,” etc.), but my scores are just above or below borderline on a number of them, and I also have a lot of other outlier traits that I think collectively indicate… something – but that aren’t captured on the assessments or in the Venns.
Do diagnosis definitions hold up better than that for most neurodivergent people? Are the discrete diagnoses well-founded in good science, like a genetic basis or a strong cluster analysis or something? Or are they kind of hand-wavey descriptions that influential thinkers have generated and that have been adopted (for now) without conclusive scrutiny of whether they stand up as discrete, useful entities?
I think I might be working my way towards posting a more personal or specific question about my neurodivergence in particular, reasons I’d consider assessment, and whether it’s a good idea for me, but I wanted to start with this more foundational one.
Best answer: Reading a couple books about the history of autism as an entity* made me wonder this very thing. I too am skeptical of the alphabet soup that tends to follow people around once they start having contact with the mental health system. My approach is to hold these diagnoses lightly, understanding that two things can be true — it may be reasonable to see myself as a member of a category as currently constituted, which might be helpful for communicating with other people, AND that category may not be “real” in the sense of being the best descriptor of the underlying structure. (TBH I kind of think of gender in this same way.) “All models are wrong but some are useful,” basically. I probably would not seek a diagnosis for anything unless I thought it was going to gain me something practical, like insurance coverage for some kind of therapy.
I thought I remembered that the DSM-5 had been more statistically oriented than what came before, but this is an old, fuzzy memory of a conversation with a mentor before it was released, and I’m not sure my memory reflects what was actually published (or that the memory itself is even right). You can read about the history of the current diagnostic manual here.
*One of which was Neurotribes, by MeFi’s Own Steve Silberman; highly recommend the book, and also the social media follow if you are into that, as he is incredibly charming. The other was The Autism Matrix by Gil Eyal.
posted by eirias at 5:43 AM on March 15, 2023 [3 favorites]
I thought I remembered that the DSM-5 had been more statistically oriented than what came before, but this is an old, fuzzy memory of a conversation with a mentor before it was released, and I’m not sure my memory reflects what was actually published (or that the memory itself is even right). You can read about the history of the current diagnostic manual here.
*One of which was Neurotribes, by MeFi’s Own Steve Silberman; highly recommend the book, and also the social media follow if you are into that, as he is incredibly charming. The other was The Autism Matrix by Gil Eyal.
posted by eirias at 5:43 AM on March 15, 2023 [3 favorites]
Part of the value of a professional assessment is sorting out your personal identification with what “having a symptom” feels like from a huge reference pool showing the full range and intensity of symptoms. In other words, many of us can identify with a trait but a mental health professional can interpret how significantly it shows up in you vs. a much larger population of people who have been diagnosed with the disorder.
posted by Miko at 5:43 AM on March 15, 2023
posted by Miko at 5:43 AM on March 15, 2023
I asked my therapist a version of this question about the overlaps of anxiety/depression/ADHD - “these kinda seem like somewhat vague and arbitrary groupings of subsets of a broad range of symptoms” - and she said “yeah, pretty much.” Antidepressants and adhd meds do actually help me, I’m not skeptical that Something is going on, but I would be kinda surprised if these categories were all still in use in the same way 100 years from now.
posted by showbiz_liz at 6:02 AM on March 15, 2023 [5 favorites]
posted by showbiz_liz at 6:02 AM on March 15, 2023 [5 favorites]
I am not anything actually relevant to this question.
I think you're probably right that the boundaries are fuzzy, but remember that this is true for many non-mental-health diagnoses, too. Think about how many things have "cold or flu like symptoms". Could be anything from a cold (which is itself many things, I believe), covid, strep, RSV, tuberculosis, cancer, sinus infection, allergies, rhinitis of pregnancy, etc. etc. With the cold symptoms, many of those things have diagnostic tests that are not symptom-based as someone mentioned above, and we have a better understanding of the physiology that creates the symptoms, but the overlapping symptoms do not themselves mean that there are not different things going on in each case.
The boundaries may end up being drawn differently when scientists know more about the physiology of what's happening (just as disease categories changes with the development of new medical instruments and tests), but I don't think that necessarily means that this is all just one big mass of symptoms with no meaningful "true" divisions or even that the current divisions are fully arbitrary.
posted by If only I had a penguin... at 6:26 AM on March 15, 2023 [5 favorites]
I think you're probably right that the boundaries are fuzzy, but remember that this is true for many non-mental-health diagnoses, too. Think about how many things have "cold or flu like symptoms". Could be anything from a cold (which is itself many things, I believe), covid, strep, RSV, tuberculosis, cancer, sinus infection, allergies, rhinitis of pregnancy, etc. etc. With the cold symptoms, many of those things have diagnostic tests that are not symptom-based as someone mentioned above, and we have a better understanding of the physiology that creates the symptoms, but the overlapping symptoms do not themselves mean that there are not different things going on in each case.
The boundaries may end up being drawn differently when scientists know more about the physiology of what's happening (just as disease categories changes with the development of new medical instruments and tests), but I don't think that necessarily means that this is all just one big mass of symptoms with no meaningful "true" divisions or even that the current divisions are fully arbitrary.
posted by If only I had a penguin... at 6:26 AM on March 15, 2023 [5 favorites]
I’ve started to think that a few decades from now, scientists may look back on these diagnoses as primitive and misguided
I’d be shocked if they didn’t. For all that we’ve learned about mental health, it’s a remarkably young field of study. Much of the systematic research is less than a century old. A large portion is only a couple decades old. And think about how much has changed in those couple decades. It’s only fairly recently that we started conceptualizing autism as a spectrum, for example.
Remember, science is a process, not a set of factual truths. For hundreds of years, we thought we knew how gravity worked, and then Einstein came along. Everything we “know” is subject to further revision as we learn more. I am positive that will happen with psychology as well. Until then, we make do with the best we have.
I had a discussion with my wife (who’s a therapist) the other night after one of our friends mentioned that he suspects he has a very mild form of ASD. I asked whether a formal diagnosis is helpful for a mild case, and she pointed out that if it helps him to deal with things better (that is, if there’s some therapeutic value), it’s useful, and I thought that was a good point. The diagnosis doesn’t matter as much as the treatment. If treating your neurodivergence via accepted practice helps you live better, it’s a good thing. If it doesn’t help you, does it matter? For a lot of people, just knowing that someone else is dealing with similar problems is helpful.
posted by kevinbelt at 6:49 AM on March 15, 2023 [6 favorites]
I’d be shocked if they didn’t. For all that we’ve learned about mental health, it’s a remarkably young field of study. Much of the systematic research is less than a century old. A large portion is only a couple decades old. And think about how much has changed in those couple decades. It’s only fairly recently that we started conceptualizing autism as a spectrum, for example.
Remember, science is a process, not a set of factual truths. For hundreds of years, we thought we knew how gravity worked, and then Einstein came along. Everything we “know” is subject to further revision as we learn more. I am positive that will happen with psychology as well. Until then, we make do with the best we have.
I had a discussion with my wife (who’s a therapist) the other night after one of our friends mentioned that he suspects he has a very mild form of ASD. I asked whether a formal diagnosis is helpful for a mild case, and she pointed out that if it helps him to deal with things better (that is, if there’s some therapeutic value), it’s useful, and I thought that was a good point. The diagnosis doesn’t matter as much as the treatment. If treating your neurodivergence via accepted practice helps you live better, it’s a good thing. If it doesn’t help you, does it matter? For a lot of people, just knowing that someone else is dealing with similar problems is helpful.
posted by kevinbelt at 6:49 AM on March 15, 2023 [6 favorites]
Best answer: a few decades from now, scientists may look back on these diagnoses as primitive and misguided, the way we now see hysteria diagnoses from the 19th century
I'd hope so. But that doesn't mean they don't have value in people's lives now.
I guess my perspective on all this, for what it's worth, had been not to chase diagnoses until I have a specific problem which needs addressing, and then to only seek them inasmuch as it will help me address that problem. I don't make the diagnosis my identity unless the symptoms it describes impact me every day of my life in a way that cannot be resolved by treatment after trying.
I can't like this statement enough. My own neurodivergence takes on average 6-7 years for people to be diagnosed from when they identify the issue. For me, and for a few other people I know also have the same condition, having that diagnosis and proper treatment but also just being able to understand our lived experience, made life so. much. better. that it was revolutionary. Worth the stigma and shame, for sure. And also to be able to network and share tips and tricks and experience.
But it didn't make life great because of that diagnosis or identity...it made life great because then it was possible to build understand, tools, and support to be able to operate in a way that actually worked. At the end of the day a diagnosis is only as useful as it is to help you take joy in your life, behave ethically, and be able to do what you want to do (or in some cases modify -- not extinguish -- goals.)
I know people who had my diagnosis and then moved on because it was not right for them. I know people who kind of got stuck in the identity politics of it, at least for a while. And in a couple of rare cases I know people whose behaviour ended up along the lines of predatorial, creating an in-group identity to exploit others. All of those things can be true. And it's okay to be wrong; to seek diagnosis and then find it's not right. Because there isn't a blood test. (Although in my case, there is a set of MRI-visible traits that can support a diagnosis...which I learned about when I had a different neurological concern and my neurologist brought it up without having access to the history.)
None of those dangers would stop me from saying figuring it out was critical to my future life path and happiness. A few years of therapy and work made a world of difference, as did understanding and being able to work with my particular quirky needs.
In other words, many of us can identify with a trait but a mental health professional can interpret how significantly it shows up in you vs. a much larger population of people who have been diagnosed with the disorder.
This point is really important too. There are psychiatrists and therapists who use self-assessment tools to the exclusion of other things, and to some extent mental illness is a lot about self-reporting. But the good ones bring a range of tools and experience in assessing people.
In my side, I’ve noticed a surge of AskMe questions about people claiming that they’re neurodivergent/ASD over the past two years to the point where I have heavy skepticism about how many are actually so.
With warm respect, there's no need for people to be skeptical of other people's diagnoses on the Internet unless those people are 'using' the diagnosis in some detrimental way. If someone says they are depressed or anxious or have ADHD, it is zero skin off my nose to simply believe them unless we're doing a work project together that is about to impact my career or I'm going to send them money or something.
When definitions and levels of stigma shift, as well as media trends, there will be changes in conversation and understanding. And there's no doubt that levels of diagnosis of ASD in children have gone up tremendously...so it kind of stands to reason that adults may be exploring that who may have been missed previously. Or it may be something else.
But it's really okay to not be skeptical about people's self-definitions. Mostly the scammers are pretending to be ex-military engineers anyway, if you believe catfishing shows. :)
I mention that, OP, because one thing that prevented me from getting help earlier than I did was my need to be ultra-rational and basically hold myself to a purity standard - I was functional and working and buying a house and had friends and a partner and was fine according to all external standards. But the effort that required and the wear on me (and the negative impacts of that on some of my relationships, although in often subtle ways) was not normal.
And boy, did my friends feel like they had to reassure me that I couldn't be 'one of those people' too...we're still friends but I learned people would rather stay skeptical than believe me and so I adapted how I talk about it (if at all). It's a weird thing because I wasn't actually asking for any accommodations, just trying to share my life.
(Peanut allergy is another rising diagnosis, which obviously is not a mental illness, but there can be trends that hold very true that are still rises in rates of things.)
It's also okay for people to have understandings of themselves and their experiences that shift over time.
Phew, sorry. Anyways, tldr;
- yes the tools are underdeveloped
- yes you may find that what you find now doesn't pan out
- it's okay to seek understanding and help without either a perfect paradigm or a perfect diagnosis
posted by warriorqueen at 6:59 AM on March 15, 2023 [17 favorites]
I'd hope so. But that doesn't mean they don't have value in people's lives now.
I guess my perspective on all this, for what it's worth, had been not to chase diagnoses until I have a specific problem which needs addressing, and then to only seek them inasmuch as it will help me address that problem. I don't make the diagnosis my identity unless the symptoms it describes impact me every day of my life in a way that cannot be resolved by treatment after trying.
I can't like this statement enough. My own neurodivergence takes on average 6-7 years for people to be diagnosed from when they identify the issue. For me, and for a few other people I know also have the same condition, having that diagnosis and proper treatment but also just being able to understand our lived experience, made life so. much. better. that it was revolutionary. Worth the stigma and shame, for sure. And also to be able to network and share tips and tricks and experience.
But it didn't make life great because of that diagnosis or identity...it made life great because then it was possible to build understand, tools, and support to be able to operate in a way that actually worked. At the end of the day a diagnosis is only as useful as it is to help you take joy in your life, behave ethically, and be able to do what you want to do (or in some cases modify -- not extinguish -- goals.)
I know people who had my diagnosis and then moved on because it was not right for them. I know people who kind of got stuck in the identity politics of it, at least for a while. And in a couple of rare cases I know people whose behaviour ended up along the lines of predatorial, creating an in-group identity to exploit others. All of those things can be true. And it's okay to be wrong; to seek diagnosis and then find it's not right. Because there isn't a blood test. (Although in my case, there is a set of MRI-visible traits that can support a diagnosis...which I learned about when I had a different neurological concern and my neurologist brought it up without having access to the history.)
None of those dangers would stop me from saying figuring it out was critical to my future life path and happiness. A few years of therapy and work made a world of difference, as did understanding and being able to work with my particular quirky needs.
In other words, many of us can identify with a trait but a mental health professional can interpret how significantly it shows up in you vs. a much larger population of people who have been diagnosed with the disorder.
This point is really important too. There are psychiatrists and therapists who use self-assessment tools to the exclusion of other things, and to some extent mental illness is a lot about self-reporting. But the good ones bring a range of tools and experience in assessing people.
In my side, I’ve noticed a surge of AskMe questions about people claiming that they’re neurodivergent/ASD over the past two years to the point where I have heavy skepticism about how many are actually so.
With warm respect, there's no need for people to be skeptical of other people's diagnoses on the Internet unless those people are 'using' the diagnosis in some detrimental way. If someone says they are depressed or anxious or have ADHD, it is zero skin off my nose to simply believe them unless we're doing a work project together that is about to impact my career or I'm going to send them money or something.
When definitions and levels of stigma shift, as well as media trends, there will be changes in conversation and understanding. And there's no doubt that levels of diagnosis of ASD in children have gone up tremendously...so it kind of stands to reason that adults may be exploring that who may have been missed previously. Or it may be something else.
But it's really okay to not be skeptical about people's self-definitions. Mostly the scammers are pretending to be ex-military engineers anyway, if you believe catfishing shows. :)
I mention that, OP, because one thing that prevented me from getting help earlier than I did was my need to be ultra-rational and basically hold myself to a purity standard - I was functional and working and buying a house and had friends and a partner and was fine according to all external standards. But the effort that required and the wear on me (and the negative impacts of that on some of my relationships, although in often subtle ways) was not normal.
And boy, did my friends feel like they had to reassure me that I couldn't be 'one of those people' too...we're still friends but I learned people would rather stay skeptical than believe me and so I adapted how I talk about it (if at all). It's a weird thing because I wasn't actually asking for any accommodations, just trying to share my life.
(Peanut allergy is another rising diagnosis, which obviously is not a mental illness, but there can be trends that hold very true that are still rises in rates of things.)
It's also okay for people to have understandings of themselves and their experiences that shift over time.
Phew, sorry. Anyways, tldr;
- yes the tools are underdeveloped
- yes you may find that what you find now doesn't pan out
- it's okay to seek understanding and help without either a perfect paradigm or a perfect diagnosis
posted by warriorqueen at 6:59 AM on March 15, 2023 [17 favorites]
Best answer: In my side, I’ve noticed a surge of AskMe questions about people claiming that they’re neurodivergent/ASD over the past two years to the point where I have heavy skepticism about how many are actually so.
What an unhelpful response to take to mefites posting in good faith. An increase in diagnoses can be caused by a wide variety of things, but an increasing awareness of the possibility is definitely one of them.
are they kind of hand-wavey descriptions that influential thinkers have generated and that have been adopted (for now) without conclusive scrutiny of whether they stand up as discrete, useful entities?
They are hand-wavey but I think there's been a fair amount of scrutiny as to whether they are useful. Generally speaking, even though there's "treatment" only for some kinds of neurodivergence, most people seem to find a diagnosis helpful in and of itself. I think this is because it makes it easier to find tools, tricks, ideas and just plain acceptance that you really do find some things harder than a lot of people and you don't need to compound the difficulty by beating yourself up about it.
posted by plonkee at 7:04 AM on March 15, 2023 [7 favorites]
What an unhelpful response to take to mefites posting in good faith. An increase in diagnoses can be caused by a wide variety of things, but an increasing awareness of the possibility is definitely one of them.
are they kind of hand-wavey descriptions that influential thinkers have generated and that have been adopted (for now) without conclusive scrutiny of whether they stand up as discrete, useful entities?
They are hand-wavey but I think there's been a fair amount of scrutiny as to whether they are useful. Generally speaking, even though there's "treatment" only for some kinds of neurodivergence, most people seem to find a diagnosis helpful in and of itself. I think this is because it makes it easier to find tools, tricks, ideas and just plain acceptance that you really do find some things harder than a lot of people and you don't need to compound the difficulty by beating yourself up about it.
posted by plonkee at 7:04 AM on March 15, 2023 [7 favorites]
The diagnosis doesn’t matter as much as the treatment. If treating your neurodivergence via accepted practice helps you live better, it’s a good thing. If it doesn’t help you, does it matter? For a lot of people, just knowing that someone else is dealing with similar problems is helpful.
I think this is the key. People are generally after symptom relief/management, not a category to pin to their lapel. (Admittedly, this can get a little lost in the online noise generated by militant young people who generationally seem awfully invested in sorting themselves into boxes, but that's just young people being young people.) If what you try genuinely helps you, then who cares whether the formal diagnosis is "correct?" Even diagnosis of a physical illness is a fundamentally imprecise approach--over the course of 20-ish years, a friend of a friend has been diagnosed with MS, then with another, much rarer, autoimmune disorder, NMO, and now they're on to shrugging. As Aristotle says, we are not carving nature at its joints.
posted by praemunire at 7:24 AM on March 15, 2023 [2 favorites]
I think this is the key. People are generally after symptom relief/management, not a category to pin to their lapel. (Admittedly, this can get a little lost in the online noise generated by militant young people who generationally seem awfully invested in sorting themselves into boxes, but that's just young people being young people.) If what you try genuinely helps you, then who cares whether the formal diagnosis is "correct?" Even diagnosis of a physical illness is a fundamentally imprecise approach--over the course of 20-ish years, a friend of a friend has been diagnosed with MS, then with another, much rarer, autoimmune disorder, NMO, and now they're on to shrugging. As Aristotle says, we are not carving nature at its joints.
posted by praemunire at 7:24 AM on March 15, 2023 [2 favorites]
One other comment on changing rates of diagnosis of ASD in particular. It is a trope for a reason that a middle aged mother of a person who goes through the autism diagnosis process will wind up wondering if she is on the spectrum herself. This should not be a surprise because (1) the goalposts for what the condition is moved, so we’d expect that a lot of people who assess their childhood memories against today’s questionnaires will find that they probably would have qualified as kids, if born later and (2) ASD is thought to be heavily genetically influenced, so once you’ve got someone in the family, a reappraisal of your own experiences makes sense. I don’t know if the same is true of ADHD, but it wouldn’t surprise me a great deal. I think this is functional, even if some of those parents are actually wrong! It is so much better to approach your struggling child as someone who is part of the human family, part of your family, a person with needs and desires that are possible to empathize with; and some of the professionals you encounter will be very invested in convincing you otherwise.
posted by eirias at 7:29 AM on March 15, 2023 [4 favorites]
posted by eirias at 7:29 AM on March 15, 2023 [4 favorites]
Not a health care professional. Yes, focus on treatment and adaptive strategies. The health care professions are pushed to provide fast, reasonably effective treatments, especially medication. And medications are often hugely helpful, and worth taking. But learning strategies to manage autism and other diagnoses, in addition to medication, leads to a better life.
posted by theora55 at 7:32 AM on March 15, 2023
posted by theora55 at 7:32 AM on March 15, 2023
A formal diagnosis permits you to receive some measure of treatment that without a diagnosis you either can't get (e.g., prescription drugs) or may not be able to afford (e.g., talk therapy). It also may entitle you to accommodations, protections and even income under laws designed to protect sick or disabled people.
A negative of a formal diagnosis is that it may make certain kinds of medical-history-based insurance more expensive or unavailable, and preclude you from a (thankfully shrinking) list of licenses and employment opportunities that are allowed to exclude those with the diagnosis.
posted by MattD at 7:36 AM on March 15, 2023
A negative of a formal diagnosis is that it may make certain kinds of medical-history-based insurance more expensive or unavailable, and preclude you from a (thankfully shrinking) list of licenses and employment opportunities that are allowed to exclude those with the diagnosis.
posted by MattD at 7:36 AM on March 15, 2023
Response by poster: I can see how the diagnoses could be useful for things like medication and accommodations if they work, even if the diagnoses aren't that well-founded. In my case, I don't need accommodations and I'm pretty sure that I don't want medication, but a diagnosis would be valuable to me for connecting with other people like me, communicating with others about it, and/or what warriorqueen so nicely described as "just being able to understand our lived experience." For those purposes, I feel like getting the right diagnosis, rather than just a pragmatically useful one, would matter more.
When I read about, say, autistic women's experiences, I haven't gotten that feeling of "Oh, this explains so much!" or "HERE are people like me!" because while there are areas of overlap, there are too many "Nope, definitely not me" parts. Same with other diagnoses. So I feel like maybe I couldn't get what I want from a diagnosis unless it was the right one, and maybe at this point in our evolution of understanding, there isn't a right one.
posted by daisyace at 7:43 AM on March 15, 2023 [2 favorites]
When I read about, say, autistic women's experiences, I haven't gotten that feeling of "Oh, this explains so much!" or "HERE are people like me!" because while there are areas of overlap, there are too many "Nope, definitely not me" parts. Same with other diagnoses. So I feel like maybe I couldn't get what I want from a diagnosis unless it was the right one, and maybe at this point in our evolution of understanding, there isn't a right one.
posted by daisyace at 7:43 AM on March 15, 2023 [2 favorites]
Best answer: So, one thing about autism specifically is it’s a developmental disorder, which presents as “abnormal” development along many different axes. Delayed speech and hyperlexia are both common in autistic people; same with hypersensitivity vs hyposensitivity to sensory stimuli, same with extremely high empathy vs extremely low empathy. Frequently this is seen within the person as well, with a number of highly developed skills next to way below average ones. I have 99th percentile verbal skills and 6th percentile motor skills, for example. The pattern of autism is in that wonky pattern of development (“spiky profile” is the academic term) that tends to associate with social difficulties and a preference for sameness and routine. So if you look at autistic women’s experiences, a LOT of it isn’t going to fit you, because you’re seeing the experiences of both the hyperlexic and those with speech delays, of the hypersensitive and the hyposensitive, etc.
Talking with a mental health professional can help figure out if you fit the pattern, which doesn’t actually require you to relate to most other autistic people’s experiences. One I don’t relate to at aaaaaalllllll is media special interests (obsessing about a particular movie, show, book, game), and for a long time I thought I had no special interest because that was the prevalent picture of special interests. Talking to a mental health professional made me realize I have a decades long special interest that I didn’t recognize because I, uh, assumed everyone knew and was as interested in this obscure historical topic. Reader, they were not.
All that to say that the stuff you see on the internet is more about sharing specific experiences, which may not fit; a mental health professional can help you look at the pattern (because they understand the underlying processes) and see if it fits even if your specifics are unique.
posted by brook horse at 8:45 AM on March 15, 2023 [13 favorites]
Talking with a mental health professional can help figure out if you fit the pattern, which doesn’t actually require you to relate to most other autistic people’s experiences. One I don’t relate to at aaaaaalllllll is media special interests (obsessing about a particular movie, show, book, game), and for a long time I thought I had no special interest because that was the prevalent picture of special interests. Talking to a mental health professional made me realize I have a decades long special interest that I didn’t recognize because I, uh, assumed everyone knew and was as interested in this obscure historical topic. Reader, they were not.
All that to say that the stuff you see on the internet is more about sharing specific experiences, which may not fit; a mental health professional can help you look at the pattern (because they understand the underlying processes) and see if it fits even if your specifics are unique.
posted by brook horse at 8:45 AM on March 15, 2023 [13 favorites]
Also because of rigidity and literalism it’s easy to misinterpret a lot of stuff as not applying to you. I thought for years that I didn’t engage in rocking because I pictured this as rocking back and forth on your heels. Swaying side to side, or sitting and leaning your torso back and forth, didn’t occur to me as fitting under this label. Nope, that’s all rocking too. I also thought that I didn’t have “speech above my age” as a kid until I saw an example and was very consternated to discover that an eight year old using the words “perhaps” and “surface” is considered abnormal. The list goes on. It’s worth at least talking to someone about, in my opinion. You can decide at the end the label doesn’t fit and discard it, but it’s easy to think something doesn’t fit when you don’t have a full understanding of if. I did the same thing with PTSD and wish I had talked to someone sooner.
posted by brook horse at 8:57 AM on March 15, 2023 [5 favorites]
posted by brook horse at 8:57 AM on March 15, 2023 [5 favorites]
Best answer: So I feel like maybe I couldn't get what I want from a diagnosis unless it was the right one, and maybe at this point in our evolution of understanding, there isn't a right one.
Maybe, but are you emphasising precision ahead of accuracy? So, even though there's a lot of fuzziness about ASD, depression, personality disorders, C-PTSD and other diagnoses, for most people they are sufficiently accurate even if they are not as precise as they could be.
Why is it that you are sure that an existing fuzzy diagnosis won't fit you? If it's accurate enough then there will be other people more precisely like you within it.
posted by plonkee at 9:46 AM on March 15, 2023
Maybe, but are you emphasising precision ahead of accuracy? So, even though there's a lot of fuzziness about ASD, depression, personality disorders, C-PTSD and other diagnoses, for most people they are sufficiently accurate even if they are not as precise as they could be.
Why is it that you are sure that an existing fuzzy diagnosis won't fit you? If it's accurate enough then there will be other people more precisely like you within it.
posted by plonkee at 9:46 AM on March 15, 2023
What I learned from my medical evaluation to see if I had anything was that they didn't really care unless I was completely unable to function. If I had the mental health equivalent of chronic sniffles and some insomnia but was still able to go to my job every day and I hadn't lost all interest in fun activities and I still eat at regular levels and haven't become an alcoholic or anything REALLY obviously bad, then... you're fine, you're normal, it doesn't matter. "Subclinical and undiagnosable, maybe a bit of anxiety, I'll give you the Calm app" (NOT A JOKE on that last one) is what I got. In retrospect I can't help but think that I would have had to have demonstrated MASSIVE obvious distress, like "Look at my sliced up wrists on Zoom!" (disclaimer: I don't have that) to have gotten anywhere.
So frankly, A Diagnosis may not even be possible if you're not that badly off, as it turns out. Unfortunately, you sound like me on the "I come out as borderline on the online tests" stuff. I'm not diagnosable in any reasonable way to get any kind of help or identify why I'm just a fucking weirdo who fails at her job every day, but not an autistic weirdo and not badly off enough to be an ADHD weirdo (this would be my personal guess, but again, I don't have the maximum number of symptoms, just like, some), or anything. I'm really getting tired of people telling me I must be autistic because I'm weird, in particular. I don't have autism symptoms, I'm just weird, I've had this checked out, please stop. I'm not anything enough to have anything. And....that might be the case with you as well.
I note that I think we're still pretty much in the "use leeches" phase of mental health care as is anyway. Nobody has much of any idea, handing out psych drugs like candy is the first/middle/last line of treatment for a lot of things, all they do is say "Try this drug for six weeks, see if it helps" and then you're a lab rat testing your way through it, immediately having bad symptoms and hoping that after six weeks it maaaaaaybe won't be so bad? There was some mental health simulator thing on the NYT awhile back that I obsessively went through for DAYS because it bugged me so much with its attitude of "Take drugs!" as really the only thing out there, but also nobody really knows what they are doing with the drugs or how they work or if they work, but try it anyway! I don't judge anyone who takes meds, but the way things operate these days doesn't make me even 1% comfortable with giving them a try just to see when nobody really seems to know.
Frankly, unless you want to get drugs, I'm not sure if there's any point to getting the eval. (I note I was doing this because I was trying to get my HMO to pay for my out of pocket therapy, which obviously they would not do.) And if you're not very clearly obviously badly off, even that may not happen.
posted by jenfullmoon at 10:09 AM on March 15, 2023
So frankly, A Diagnosis may not even be possible if you're not that badly off, as it turns out. Unfortunately, you sound like me on the "I come out as borderline on the online tests" stuff. I'm not diagnosable in any reasonable way to get any kind of help or identify why I'm just a fucking weirdo who fails at her job every day, but not an autistic weirdo and not badly off enough to be an ADHD weirdo (this would be my personal guess, but again, I don't have the maximum number of symptoms, just like, some), or anything. I'm really getting tired of people telling me I must be autistic because I'm weird, in particular. I don't have autism symptoms, I'm just weird, I've had this checked out, please stop. I'm not anything enough to have anything. And....that might be the case with you as well.
I note that I think we're still pretty much in the "use leeches" phase of mental health care as is anyway. Nobody has much of any idea, handing out psych drugs like candy is the first/middle/last line of treatment for a lot of things, all they do is say "Try this drug for six weeks, see if it helps" and then you're a lab rat testing your way through it, immediately having bad symptoms and hoping that after six weeks it maaaaaaybe won't be so bad? There was some mental health simulator thing on the NYT awhile back that I obsessively went through for DAYS because it bugged me so much with its attitude of "Take drugs!" as really the only thing out there, but also nobody really knows what they are doing with the drugs or how they work or if they work, but try it anyway! I don't judge anyone who takes meds, but the way things operate these days doesn't make me even 1% comfortable with giving them a try just to see when nobody really seems to know.
Frankly, unless you want to get drugs, I'm not sure if there's any point to getting the eval. (I note I was doing this because I was trying to get my HMO to pay for my out of pocket therapy, which obviously they would not do.) And if you're not very clearly obviously badly off, even that may not happen.
posted by jenfullmoon at 10:09 AM on March 15, 2023
Best answer: "Are the discrete diagnoses well-founded in good science, . . ."
As regards Autism Spectrum Disorder:
The American Psychological Association (APA) has had seven different criteria for autism since 1952, starting with viewing autism as a type of childhood schizophrenia.
In 2013, the APA took a vote and decided that Aspergers Syndrome, Childhood Disintegrative Disorder and Rhett's syndrome were no longer autisms.
The current and past APA criteria for autism are based on research on only males and are male-centric in the description of symptoms. There are four males identified as having autism for every one female and there is a growing feeling that the APA criteria are biased to not identify females with autism, who have different presentations of autism. Also, the vast, vast majority of research on autism has been and continues to be on males under the age of puberty.
There is a feeling (see 2013 above) that the APA and others may lump things together as "autism" when in fact they may be different things entirely. Temple Grandin has said, "“The spectrum is so broad it doesn’t make much sense. Are we really going to put people with severe autism who cannot dress themselves in the same category as people with mild autism who work in Silicon Valley?”
So for autism, there is a lot of not good science behind that diagnosis. There is no doubt that autism (or autisms) exist, but the APA has not done good science. As cited above, the book "NueroTribes" is a good, if exhaustive, history of autism.
posted by ITravelMontana at 3:48 PM on March 15, 2023 [2 favorites]
As regards Autism Spectrum Disorder:
The American Psychological Association (APA) has had seven different criteria for autism since 1952, starting with viewing autism as a type of childhood schizophrenia.
In 2013, the APA took a vote and decided that Aspergers Syndrome, Childhood Disintegrative Disorder and Rhett's syndrome were no longer autisms.
The current and past APA criteria for autism are based on research on only males and are male-centric in the description of symptoms. There are four males identified as having autism for every one female and there is a growing feeling that the APA criteria are biased to not identify females with autism, who have different presentations of autism. Also, the vast, vast majority of research on autism has been and continues to be on males under the age of puberty.
There is a feeling (see 2013 above) that the APA and others may lump things together as "autism" when in fact they may be different things entirely. Temple Grandin has said, "“The spectrum is so broad it doesn’t make much sense. Are we really going to put people with severe autism who cannot dress themselves in the same category as people with mild autism who work in Silicon Valley?”
So for autism, there is a lot of not good science behind that diagnosis. There is no doubt that autism (or autisms) exist, but the APA has not done good science. As cited above, the book "NueroTribes" is a good, if exhaustive, history of autism.
posted by ITravelMontana at 3:48 PM on March 15, 2023 [2 favorites]
Response by poster: Thank you, everybody! Every one of these answers is helpful, though I marked some that particularly shifted or added to my understanding. I appreciate the help!
posted by daisyace at 6:50 PM on March 16, 2023
posted by daisyace at 6:50 PM on March 16, 2023
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I have known people who have cycled through diagnoses of schizophrenia and bipolar disorder before finally finding a treatment that worked when they found a doctor who labeled their symptoms as complex ptsd. The proof of the pudding is in the eating, and for many psychological diagnoses, the proof of the illness is in the treatment. But even then, it's likely that e.g. schizophrenia is actually a bunch of underlying causes that we lump together as one disorder, as I understand it.
I think taking diagnoses with a grain of salt is a good thing. But, they can be very useful for e.g. trying out medicarions, getting accommodations at work, or being able to talk about your experiences with others who have similar ones. Even "hysteria" as a diagnosis served a social function--maybe not one we might all like or wish to be party to, but it did.
I guess my perspective on all this, for what it's worth, had been not to chase diagnoses until I have a specific problem which needs addressing, and then to only seek them inasmuch as it will help me address that problem. I don't make the diagnosis my identity unless the symptoms it describes impact me every day of my life in a way that cannot be resolved by treatment after trying. (At that point, I think it makes sense to identify, because I would need a community of people to help me navigate my symptoms, irrespective of what the "real root cause" is.)
posted by branca at 5:13 AM on March 15, 2023 [17 favorites]