The problem with comparing self-diagnosis and professional diagnosis is that both categories combine a wide variety of different things with hugely varying levels of accuracy.
Self-diagnosis can be thoughtful research, using both the experiences of other neurodivergent people and professional journals and books, taking advantage of your devotion to figuring out your own case and your privileged vantage point about how your own brain works. Or it can be someone taking a PsychCentral quiz and diagnosing themselves with twelve personality disorders.
Professional diagnosis can be someone with years of training and clinical experience across a wide variety of neurodivergences who listens thoughtfully to the patient’s experiences, uses medical tests to rule out possible physical and neurological causes, and understands how the patient’s culture and social experiences affect their neurodivergence. Or it can be a general practitioner saying “are you sad? Tired a lot? Here, have some antidepressants.”
Now, the best professional diagnosis is almost certainly better than the best self-diagnosis. And the worst professional diagnosis is probably better than the worst self-diagnosis, if only because there’s a higher base rate of depression than there is of twelve comorbid personality disorders. But these two categories overlap a lot, and I think a thoughtful, careful self-diagnosis should be considered far more credible than our friend the Indiscriminately Antidepressant-Prescribing GP.
Fun fact: according to one study, 38% of people currently using antidepressants have never met criteria for a disorder that antidepressants are prescribed for. This might be a reasonable state of affairs– after all, antidepressants are pretty safe drugs, depression is awful, and even under current standards about half of depressed Americans get no treatment— but it does suggest that professional diagnosis of depression is not great evidence that you were actually, at any point, depressed.
One thing that often gets conflated with self-diagnosis but should, in my opinion, be thought about separately is peer diagnosis: people who have a particular neurodivergence– particularly if they’re also a member of the community of people who have that neurodivergence– and who know you well suggesting that you have that neurodivergence. One of the biggest problems with self-diagnosis is that just reading the DSM symptoms doesn’t let you know what a neurodivergence looks like in the same way that interacting with a lot of people with that neurodivergence does. You might not know what “often has trouble organizing activities” looks like unless you know a lot of ADHD people. Clinical experience solves that problem, but so does knowing a hell of a lot of autistic people.
The other problem is that some neurodivergences are much, much easier to self-diagnose than others. Gender dysphoria is probably Self-Diagnosis Georg, insofar as the diagnostic criteria are basically:
- Says they have gender dysphoria
- Repeats that they have gender dysphoria in a very loud and emphatic voice
- Gets agitated at the suggestion that they don’t have gender dysphoria
- Demands hormones to treat their gender dysphoria, which they have
But even neurodivergences where the criteria aren’t purely self-referential can be pretty easy to diagnose. “Hm, I’m not eating very often because I’m afraid of getting fat. I wonder what I could possibly have.” “Huh, I experienced a traumatic event and now I’m on edge all the time and sometimes things remind me of my trauma and I have flashbacks. What could it be?” Similarly, people who suspect they have depression can find out pretty accurately if they’re depressed by taking the Beck Depression Inventory.
On the other hand, something like autism or borderline personality disorder has more complex symptoms, and someone who isn’t familiar with what they look like can be seriously misled. And some conditions like schizophrenia, while often pretty obvious to an outside observer, tend to leave people unable to figure out that they’re schizophrenic. In those cases self-diagnosis is going to be unreliable.
However, one thing that is usually easy to figure out (schizophrenia aside) is that something is wrong. Once you get beyond the PsychCentral quiz level of self-diagnosis, most people who consider the possibility that they’re neurodivergent are going to have some sort of problem. It might not be the problem they think they have! If someone self-diagnoses as having generalized anxiety disorder, they might actually have another mood or personality disorder, they might be in an abusive relationship or social group, they might be autistic and continually in a state of proto-meltdown, or they might just be under inhumane levels of stress.
I don’t mean to say that it isn’t important to figure out which you have. If you’re anxious, you might want to try exposure therapy, while if you are autistic and in a state of proto-meltdown, you probably want to remove stimuli that cause you to melt down from your environment. However, this does mean that a lot of self-misdiagnosis isn’t a problem of special snowflake fakers: it’s a problem of people who legitimately have something wrong with them but are mistaken about what.
Finally, I found in my own case that just having a professional diagnosis wasn’t very helpful in understanding myself. I had to go through something a lot like a self-diagnosis process– researching my symptoms, understanding coping mechanisms, talking to other people with similar brain issues to mine. So even if you have a professional diagnosis, you might be advised to research your diagnosis yourself or talk to someone who has. It pays off.
Thing of Things 
I think the worst professional diagnosis is pretty definitely worse than the worst self-diagnosis, because of the same power that often makes people want to get professional diagnoses in the first place, and because at least when people self diagnose this likely has some relation to something-they-want rather than running counter entirely. Like, the depression example is nowhere near the worst that can happen. You can have people pressured into taking medication they really *shouldn’t* be on, or things like racist diagnosis of schizophrenia, etc.
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To be fair, people taking medication they really *shouldn’t* be on is a common consequence of the depression thing– people with bipolar disorder really shouldn’t be on antidepressants.
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When I copypasted a bit of this post to my girlfriend, she basically said this. Professional diagnosis can be much, much worse than this.
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Borderline is confusing. I’ve occasionally thought I had it, but it’s really hard to figure out. I can relate to many of the internal symptoms, but many of the behavioral symptoms don’t apply. I know something is wrong and I’ve been in therapy for years, but I’ve never gotten a clear diagnoses that sums everything up.
Another example is neurotypical people who are socially awkward, due to social inexperience or social anxiety, self-diagnosing with autism because they don’t understand it.
So, self-diagnosis can be tricky, and I don’t think it should always be taken at face value by others in many cases. On the other hand, I agree that for certain disorders it is very important and necessary, and that certainly people shouldn’t deny it when somebody says “something is wrong”.
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Self indulgent anecdote:
I was having a really great day at work once – I’d been to lunch as an employee of the month nominee (we all take what we can gettake what you get :P), perhaps I’d even won it. I headed back to my desk, and tried to get on with a basic chore: addressing envelopes, matching them to ticket orders. But it proved surprisingly difficult. My hands would keep shaking involuntarily; I couldn’t sustain concentration for more than a few seconds at a time.
Normally I would have put this sort of thing down to a hangover, sleep deprivation, or excessive caffeine intake (most likely, all of the above.) But I hadn’t touched a coffee for day or alcohol for two, and I’d had what felt like the best couple of nights sleep in years.
Something clicked. “I’m too happy or excited or something, to the point its physically affecting me. Maybe I have that Bipolar Disorder thing?”
I can’t emphasize enough how huge a revelation this was. Suddenly all the (horrific, psychotic) depressive symptoms I had experienced for several years had some explanation, beyond “you are just making all this up to have excuses for dropping out of uni / not dealing with rejection like an adult / isolating yourself from your friends / not leaving your house this fortnight. Not like real depressed people.” Ahem.
Epilogue:
Turns out there is more than one kind of Bipolar. Its inherently hard to be sure of the accuracy of judgements like this, but to this day I am convinced that the excitement and relief from the self-diagnosis was the primary accelerant on my emotions and cognition, into genuine euphoria, racing thoughts, etc.
I believe the core Type I / Type II dichotomy wasn’t especially prominent on Wikipedia at the time; in any case my brief Googling didn’t put me especially on guard to lookout for acute manic psychosis as it developed over the next 36+ hours of no sleep. Not that there’s any way to know if that would have made a difference; although my insight during mania typically remains unusually high, as far as these things go.
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There is also the thing where it’s a question whether or not something _should_ be a diagnosis.
Let’s take the condition formerly known as Aspergers: My grandfather, both parents, me and two of my three kids have that. Of course, only my kids are young enough to actually have been diagnosed, the rest of us are just ‘difficult’. (If it’s not genetic, my family is so many standard deviations off that it’s probably not worth calculating.)
The thing is that it’s only a problem because of how normal people treat us.
For instance, I didn’t grew up with anything remotely like ‘quiet hands’. I grew up learning tricks like: “For some unfathomable reason, people want you to look in their eyes a lot. If you don’t want to, just look at their eyebrows and they won’t know the difference.”
The result was that by high school age, people didn’t ‘spot’ me as different. Just the other day, someone asked me if I was somewhat autistic, and I went: ‘yes, how did you guess?’ The answer was that when I was explaining something and was distracted and went off on a tangent, I kept going back to where I left off and continued the explanation. He worked professionally with autistics and told me this was a fairly unique trait.
When the ability to traverse a mental tree structure without forgetting your place is a symptom, something is wrong with the diagnosis.
Just as it is plainly stupid to organise phone books by names when phone numbers are already a unique identifier. Seriously, normal people don’t have a clue… 🙂
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Isn’t the point of organizing phonebooks by name so that you can search them? Or am I misunderstanding you?
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For some people, remembering people and faces by numbers is easier than remembering them by names. I realise that for most people it’s not that way, but I really hate my phone for trying to force me to remember peoples names when the numbers are already there.
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This is why I love 192.0.78.12. 🙂 (Ok, I cheated with ping.)
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Until I read the other replies I was utterly confused by the phonebook thing – I thought you were talking about the big paper books they used to have. Guess I’m showing my age there.
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My faith in the proposition that the DSM identifies real disorders is pretty low*; I strongly suspect that our descendants will regard our diagnosis and treatment of mental illness approximately the way we regard the medical practices of the 15th century. Which is to say I’m a fan of self-diagnosis — for the placebo effect, if nothing else. If it makes people feel better to put a label on their problems, then they’re doing hardly more or less than a professional would.
*With a couple of exceptions, especially the most obviously “organic” ones. Even a 15th-century doctor could set a broken leg.
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Thanks for writing this– I’ve seen self-diagnosis despised, and that never seemed reasonable to me.
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Here is what I wrote on the topic over on Tumblr:
I’ll add, I had a really bad drug overdose as a late teen, including seizures and near death. This messed me up for years, couldn’t sleep, kept reliving the incident. Once I went to see a neuro-doc. He found nothing wrong. But something was wrong. I had night terrors, panic attacks. I was afraid to take any kinds of drugs. I slept in the living room on the floor, cuz I thought if I was dying in my sleep my parents were more likely to find me there and save me.
This was probably something like PTSD. I never got it diagnosed. I didn’t even imagine I could get it diagnosed, and I lacked the money to go to doctors fishing for help. So I just carried on.
I got over it. ’Cept I still don’t sleep very well. Never got over that part.
I have a therapist now. I told him all this stuff. He nodded and carried on.
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And for what it is worth, I have been “other diagnosed” as autistic by a number of autistic and autistic-aware people. They basically say “It’s kinda obvious.” Maybe that means something.
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Actually, I suspect the best professional diagnosis is worse than the best self-diagnosis, and the worst professional diagnosis is worse than the worst self-diagnosis, but that the average (or median) professional diagnosis is better than the average self-diagnosis.
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I’d say there’s a huge divergence between physiological and psychological self-diagnoses. I think the professional/self gap is a lot wider in the former, and when a lot of people criticize “self-diagnosis”, they’re including people who go to WebMD because they have a cough and find out that they have all the cancers.
But psychology and mental health are different matters, and I just plain don’t trust the DSM that much, so I’d put much more stock in self-diagnosis here. And anger at self-diagnosers is something I will never get. (Well, I get why do they do it. They don’t want anyone getting any unearned sympathy. What I don’t get is how you can not understand that if policing “unearned” sympathy is a hobby of yours, then neither the earned nor unearned variety will come to you anytime soon, don’t worry.)
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So I understand that no one has commented here for a few months, but I suppose it’s at least worth a shot. Do you perhaps have a definition for this proto-meltdown mentioned here, or a description or anecdote of some sort, if it isn’t too personal? I haven’t come across that particular term before, and seeing as a quick Google search only yielded this article again, well.
I’ve been… considering, perhaps, if a self-diagnosis might be useful to me, to go along with some pretty obvious anxiety issues. I don’t exactly feel safe seeking a professional right now, but perhaps the thoughts of those who identify as neurodivergent might be useful? As is mentioned here anxiety can be caused by any number of things, but the idea of being in a sort of pre-meltdown and having to remove stimuli and/or recharge sort of… resonates.
I don’t… know, really. I’m slowly working my way through all of your posts but I didn’t want to lose this particular one. So.
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