Pro Self Diagnosis

a person on instagram has been harassing my friend who self-diagnosed with autism because their parents can’t afford an official diagnosis. i want to make a long, comprehensive post on why self-diagnosis should be supported (and why being against it is ableist, classist, and sexist, among other things), but i need help.

if you have opinions, experiences (esp. with psychiatrists/therapists/institutions), data, resources, anything, i’d like to put them in my post. i will credit you and put a link to any and every fact or story i share.

this isn’t just about autism, either. if you have any mental illness/disorder and have something to share, i would love to include it.

first, you have no idea you are sick at all, you are just a Normal Neurotypical going through life when suddenly you are sent to a therapist (because mentally ill people cannot have anyway of knowing they are ill)

you tell the therapist no! i am normal! not crazy at all! but the therapist knows better…

you are sent to a clinic or hospital where you speak to seven different psychiatrists, talk about your whole life in detail, have brain scans and are under constant monitoring with wires hooked up to you

doctors are pooring over texbooks and consulting other doctors and doing everything they can to find The Perfect Diagnosis

now, at last, your doctor returns. he tells you have a mental disorder. you cry a lot because now your life is ruined. the doctors tells you everything Will Be Okay. 

You are given a bottle of pills that will make everything better and of course you ALWAYS remember to take them. You are given therapy appointments three times a week with a doctor you trust who believes in you and your experiences and again you ALWAYS remember to go and never miss

Because of your special professional diagnosis, you are cured and are now functional in society and will never be bothered by your mental health again!

How I actually got all of my professional diagnoses:

“Hey doctor, I’m depressed” “Fill out this checklist” … “You have major depressive disorder”

“Oh by the way, are you ever anxious?” “Yeah” “You have generalized anxiety”

“Doctor, I hear voices” “Sounds like psychosis to me”

“Now my voices are controlling my body” (repeat this times 10 to a hundred different doctors who never believed me) “Oh thats dissociative identity disorder”

How I got my self diagnoses

Days/weeks/months/YEARS of research

Scholarly articles and peer reviewed scientific journals

Talking one on one with people who are diagnossed with it

Soul searching and trying to understand myself

Fighting myself on if I’m right

Cross examining the symptoms with other disorders I have

Like anti-selfdx people say:

Selfdx causes ableism – but they don’t provide receipts or any kinda proof, it’s just a possibility they treat like absolute fact and the source of all ableism–almost like the rampant ableism, institutionalization, and mistreatment of the mentally ill is all fabricated history–you know during the time no one would self diagnose and everyone would try to seem NT to avoid persecution; no, the true source of ableism is mental illness being more normalized that people aren’t scared to self label with it anymore–ableism isn’t like deeply rooted in our culture or anything like that, no no. THE THE SELFDXERS ARE TO BLAME!!!

You are likely to hurt yourself – Except your symptoms are also likely to hurt you? Like, do we have some sort of comprehensive study that proves self-diagnosers bring themselves more harm than benefit? Cause otherwise this is just a talking point, and from a personal standpoint, I have never seen a first hand account about how self diagnoses hurt someone–it’s always some one talking about someone talking about another person extremely removed from them, while I’ve seen a plethora firsthand accounts of how people feel their self-diagnoses has benefit them, so from my perspective it seems like self-diagnoses is actually a net-positive for the people who utilize it, and you would really have to provide some sort of study to actually prove the net-benefit is actually negative, otherwise a net-positive benefit actually be better than gambling odds, mate, so why would anyone be dissuaded? Additionally, doctors also hurt their patients? Like my dad is dead for a plethora of reasons, mainly being poisoned during navy service that the government knew but covered up was dangerous, but maybe also in part to the fact the doctor didn’t give him the right treatment but knew how to test if it was the right treatment and didn’t even immediately suggest testing what treatment was right because the test would cost extra (and he immediately opted to do the testing when he found out about it but by then it was too late)–so the US Government, insurance companies, and doctors worked together to kill my dad. So this talking point of ‘you are likely to hurt yourself!’ is actually pretty personal and offensive to me cause yeah–any treatment comes with risk?

You are biased and might ignore other symptoms – Yeah, doctors do this, too? Like… I don’t know why people think that outside parties have no bias. Also–overlooking the symptoms of a more alarming condition is doesn’t mean self diagnoses harmed you, it means having the condition and not having access to care harmed you. If you have a dangerous condition, then whether you self diagnose or not, you have a dangerous condition? Like…? 

You don’t display all the symptoms and cause a spread of misinformation – Yeah, this is just another social theory but  barely anyone even diagnosed has all the symptoms of their condition, so making assumptions based on a person with a condition instead of the actual condition would always lead to a limited understanding of the condition? Here is my counter theory: People who self diagnose are less likely to spread misinformation about the condition they assume they have because they usually spend a lot of time researching the condition, while people who have the condition professional diagnosed are not inclined to do more research beyond what their doctor tells them, so they are less likely to be able to answer comprehensive questions on the spectrum of their disorder. There, that sounds plausible. I don’t know if it’s true–but both are just theories and in an argument about theories, you have to substantiate your theory, you can’t just mantra it like it’s a fact. ((Unfortunately, I have argued with plenty of anti-selfdxers that literally said, “We kept saying the same thing over and over and what was sad was they still didn’t understand.” Like–fool, have you ever written a argument essay or participated in a debate in your life???? THAT IS NOT HOW IT WORKS.))

The condition is too rare – Yeah, except no. Even doctors thinking that a condition is too rare causes them to ignore symptoms and has cause a lot of people to seek a self diagnoses–this is one of the things I meant when I said doctors have bias. Honestly, I am self diagnosed with DID, but I half wish I did that earlier because I told a therapist about hearing voices and they dismissed me, so I thought it must have been mostly impossible and I fucken thought I was possessed by ghosts and spirits when I was younger (and still lowkey believe), and that caused… a lot of problems growing up. But I’ve seen the argument that many conditions are actually more common than we believe, and the numbers are suppressed by the preconception that they are rare. Either way–I know from first hand experience doctors ignore symptoms of ‘rare’ conditions, so I think makes sense that there would be quite a prevalence of a few ‘rare’ self diagnoses–you know, since either they (a) also ignore their symptoms or (b) research their symptoms themselves and maybe eventually self diagnose.

On the other hand, whenever I see people advocating on behalf of self diagnoses, it’s always about how self diagnose was practical for them, would have been practical for them, or is theoretically practical for other people. Like in the case of the first two–I don’t understand how anti-selfdxers don’t realize that they are arguing with people thinking self-diagnoses is the only way to help themselves–by taking away that last avenue, a lot of people take it as, “Don’t help yourself.”

No. Professional diagnosis is dangerous. People can be institutionalized, shunned, fired, disowned, have their children taken away, lose their rights, etc, etc, after being professional diagnosed. Not to mention the ableism you face during diagnosis and the immense amount of money it can cost.

Seriously, if someone is ever against self diagnosis just ask them if they ever hear of ‘silent sinus syndrome’ it literally wasn’t even in my doctors little symptoms book it’s so rare, and because I brought it up she now knows about it.

Because I researched EDS and came across mcas I was able to bring it up to a family member. She brought it up with her doctor, did a test and now she’s getting treated for it because that what she had.

Literally her Dr misdiagnosed Ms when it wasn’t ms. Treated her for it for years, it did nothing until I brought up mcas.

I’m self advocating to be tested for EDS hypermobility type because I know that’s what I have.

My self diagnosis can save my life. My self diagnosis and self advocation will help me get officially diagnosed with ADHD.

okie dokie so fwiw, my mom has a degree in psychology and most of my info comes from conversations w her and reading through her college textbooks + my experiences as someone who was self-diagnosed and got successful treatment based partially on my self diagnosis (not as good as me having actually studied it i know lol), but i’m gonna go ahead and say that self diagnosing doesn’t actually hurt anyone.

first of all, my stance on this would be completely different if random people could self-diagnose in order to get medication and professional treatment. the thing is, though, self diagnosis is generally just people researching their symptoms and trying to find a diagnosis that makes sense to them. they’re trying to find the vocabulary to explain to themselves and others what they’re going through, and then use that to get the tools to manage their conditions.

the thing about “professional diagnosis” is that, as far as i can tell, when it comes to mental health, professionals are far less concerned with diagnosis than they are with treatment. my mom even told me that a lot of times, they determine the diagnosis based on the patient’s reaction to the treatment. a lot of times, they don’t want to pin a diagnosis on someone because that can affect the kind of treatment the patient has access to in the future -esp with personality disorders, as some therapists and psychiatrists will refuse to see people diagnosed with cluster b disorders because they’re “difficult patients” and other ableist reasons. all things considered, i think this is a good policy.

however, it’s important to understand this before talking about self diagnosis. i’ve seen countless people say “if you think you have a mi, don’t self diagnose, get your ass to a doctor!” and presumably get professional dx’ed that way. but as i’ve already shown, ‘getting your ass to a doctor’ isn’t necessarily going to get you diagnosed immediately or even at all, if only because it’s not necessary  to get treatment. for example i’m diagnosed with bipolar disorder, but not BPD or HPD (both of which my psychiatrist thinks I have) or NPD (which i’m goddamn near positive i have). the reason this is, is that my dx of bipolar disorder enables my medicaid-financed psych to prescribe me medications like antidepressants, mood stabilizers, and anti-anxiety meds. dxing my PD(s), however, wouldn’t do much at the current time, to help me get treatment i need. however, me being able to say “i have BPD and NPD” helps me to explain my experiences and find coping methods, as well as meet other people with similar issues.

I want you to give me exactly one SPECIFIC way self diagnosis is dangerous. People who self diagnosis don’t self medicate and don’t get benefits from the government or anything from insurance. At most, we find suggestions online for things that might help (and here I’m talking ways to keep organized, stimming, thought redirection, apps, and things like ear defenders or sensory friendly clothes, none of which is remotely dangerous), and we try them out and either keep doing them or discard them. We find people like us so we feel less alone and we give ourselves explanations for everything that’s going on that doesn’t happen to most people.

Nobody self diagnoses because they’re bored. They do it because they KNOW something is wrong and they want to know what.

Self diagnosis isn’t “I’m gonna say i have this thing.” It’s MONTHS of research and uncertainty and talking to people who are diagnosed and looking at symptom lists and taking online tests and questionnaires (the same damn ones they give you during diagnosis, btw), and at the end of it all you’re at least as educated as any professional on that specific thing, maybe more.

Here’s the thing: my sister was a psych major. She’s a physicians assistant and she works with a psychiatrist and she actually diagnoses people. She knows fuckall about autism, and a helluva lot less than I do. She has to google criteria or pull out her DSM whereas I know it off the top of my head.

Psychiatrists and psychologists actually ASK people what they think is going on/if they know what is going on, because they understand that I know myself way better than they ever will. And guess what? If I don’t know what’s a symptom and what’s “normal” (and many disabled people do not), and the doctor doesn’t ask the right questions, I get the wrong diagnosis or no diagnosis at all, whereas if I’m the one looking at criteria and stories and symptoms, I’ll see it on the list and go “hey, I do that. Is that an autism thing?”

Incidentally, if you’ve ever said you have a cold or the flu without first going to a doctor, you have self diagnosed. If you’ve taken cold medication without first going to a doctor, congratulations! Your self diagnosis was officially more dangerous than any mental health self diagnosis, as you self medicated.

Oh, and how fucking dare you call me stupid? Take a good long look at yourself. You’re ableist. You hate disabled people. If you think you don’t, check again, because you’re spewing ableism.

how disgustingly high-and-mighty do you have to feel in order to believe that you’re the only one who can help the “poor sick people”? that anyone who goes the extra mile and does their own avid research in what’s usually a desperate attempt to understand what they’re experiencing is an “idiot”?

It takes like three minutes because your doctor trusts your ability to self diagnose, or it takes four years of constant deterioration because your doctor doesn’t trust anything but their (usually heavily sponsored and therefore edited, often shockingly inaccurate) books, or worse, their own personal opinions, to such an extent that by the time you get your diagnosis you have lost so much quality of life and been put in so much danger that it becomes completely impossible to put your faith in anyone anymore.

Like. That’s it. Those are your choices.

All uses of “you” are general.

OMG why does everyone keep self-diagnosing themselves with allism? I know actual people with allism and it’s so horrible and sad! They sit too still, they can’t communicate except to use too many words and they act too spontaneously. People with allism are so hard to take care of because they need so much socialization!

I won’t listen to anyone on the internet with allism because they’re too high functioning for it to matter. They aren’t like this person I know. I want everybody to feel sorry for me and what I have to deal with every damn day!

Hey, can the punks who think allism is a trendy diagnosis fuck off now? These allism fakers go around romanticising allism like it’s a Chanel bag and I hate them for saying anything positive about allism or having allism. 

There is nothing good about having allism, so stop this trendy shit! 

If you really had allism you would be miserable every second of every day because I know what you’re experiencing better than you do and your struggles don’t count if I can’t see them!

I’m autistic, but I’m an Allism Expertᵀᴹ and nobody knows more about allism than me!

I am not anti-self-dx. I’m not pro-self-dx, either. This is not a “don’t self-dx” post, this is (hopefully) informational, not judgemental.

Internet tests are nearly useless for testing for autism. Yes, docs use them, but they use them in conjunction with knowing the person’s history and situation. That is more important than a lot of people realize.

A case history (with permission of the person being discussed).

A man who stands 4’ 10” and weighs over 200 pounds. Of decent intelligence by current IQ tests.

He took the tests with no prior discussion about what he was taking them for. Scored ‘very autistic’ or ‘likely asperger syndrome’ (depending on the test’s aim). His doctor then talked to him about why he answered the questions the way he did, particularly ones relating to what he would prefer to do regarding social situations. He then was told to take the test again and answer the questions ‘as if in an ideal world, where he didn’t have to fear judgement for his appearance’.

He scored ‘not autistic’ and ‘not asperger syndrome’.

His first set of answers were influenced not by how he actually felt about social interaction, but how he felt about the REACTION he felt he would get in social situations. He would prefer to stay home on his computer because he didn’t want to deal with the offensive crap he would get if he went out, not because he didn’t want to go out.

Yeah, I simplified - it was not a one day process :).

The fact that it could be changed by counseling is part of the point - autism is not psychological.

The major point is that HE didn’t realize how much of his answers were based on psychological fears rather than actual preferences until he was helped with those fears. After living so many years being ostracized for other factors he’d taken those fears inside and accepted them as his nature rather than learned responses.

This is not to say that all people taking these tests and coming up positive for autism have similar internal issues skewing the results, it is only to say that it is something that must be taken into account when using the tests.

Depression, generalized anxiety, dyslexia, apraxia, sensory processing disorder, etc, along with learned responses and fears all contribute to the responses a person might give to these tests and a trained professional can help get to the basic problems. Which may be autism.

Tests are expensive (because in the US docs are expensive) and for adults, AFAB, POC, and people of low income it is hard to get a professional to even consider proper testing, so it is understandable why there is a noticeable amount of self-dx in the autism community.

I hope I didn’t offend you, either pro or anti self-dx. The intent was to add information, not judgement.

This past July, the Nova Scotia Court Of Appeal (the highest court in my jurisdiction for family issues) removed two children from their parents’ care because the parents were autistic. In their decision, they used bullshit “mental age” language and argued that, though the kids had not been exposed to violence in three years, they were at “high risk” of it because of their parents’ disability.

I’m autistic, ADHD, depressed, anxious, have multiple instances of PTSD, and last time I checked, by raw diagnostic criteria, I could qualify for several different combinations of personality disorder depending on which way the psych leaned. And that’s just what I’m comfortable talking publicly about.

I’m also a trans woman, which is technically protected under human rights here, but when there are convenient excuses to legally discriminate against me, it doesn’t help.

And for reasons I don’t particularly feel like getting into, I have reason to expect that my right to be a parent to my child may be challenged in the foreseeable future. If they had ground as firm as actual diagnoses to stand on, it undoubtedly would be. And, going by the above precedent, I would lose.

Okay. So, as some of you may already know, I created a couple of surveys about self-diagnosis on Google Docs.

One is about those who were formerly self-diagnosed with specific mental conditions, but later had those self-diagnoses confirmed to be correct by a professional.

The other is simply collecting some general information on those with currently self-diagnosed mental conditions.

(The surveys are still open if you’d like to contribute!)

I wanted to talk a bit about some of the results. And I particularly want anti self-dxers to read this very carefully.

Let’s first discuss the former survey.

Currently, this survey has 97 responses. In comparison, the latter survey has 153 responses (UPDATE: the former survey currently has 349 responses, and the latter has 529). We can thus infer that a good amount of people have had their self-diagnosed conditions confirmed in comparison to those who are currently self-diagnosed. My main goal here was to collect information on how many people I could find who have had conditions confirmed by professionals, and which conditions had been confirmed.

While there were a lot of responses limited to depression and/or anxiety, I was surprised by how many people have correctly self-diagnosed more “complicated” and stigmatized conditions as well. These included but were not limited to personality disorders (mostly BPD), obsessive-compulsive disorder, bipolar disorder, psychosis, autism, dissociative identity disorder, PTSD, and schizophrenia.

My point, here, is that self-diagnosis isn’t just for shits and giggles. A good deal of people do seek professional help, and a good deal of people are correct when they self-diagnose. Even when they’re self-diagnosing something “incredibly complicated” that “only professionals would be able to accurately pinpoint”, such as schizophrenia or DID. Think about this the next time you decide to criticize self-diagnosers as merely attention-seeking or attempting to wear a label as a “fashion statement”.

The second survey had some interesting results as well.

First, let’s talk about the length of time it takes to self-diagnose.

A vast majority of those who took the survey seem to have taken several months to be comfortable with stating to have their specific condition(s). That’s months of research. Quite a few also said that it took them a year or longer, some said several weeks, and few said several days. I too often see anti self-dxers claim that, when we self-diagnose, we simply read a single list of symptoms on WebMD or something, then say, “Yep! I have that.” What they can’t seem to understand is that we are very careful and thorough in our research, and I think this outlines that fact quite well.

Next, the benefits of self-diagnosis.

Some people did admit that self-diagnosis has not benefited them in any way, and that’s perfectly okay. But most people mentioned that self-diagnosis has helped them to validate themselves, better understand themselves, and know that they have a community and they aren’t alone in their struggles. Many mentioned that self-diagnosis has actually helped them to learn coping strategies and that they’re now better at recognizing and stopping their dysfunctional thoughts and behaviors. Keep this in mind, anti self-dxers. Self-diagnosis is more often than not a very helpful tool used to feel better about ourselves and to aid us in our path to recovery.

When asked if they planned on seeking professional diagnosis and what was keeping them from doing so, they gave rather mixed answers. Those who did plan on ultimately seeking professional help said that they wanted to do so in order to feel validated and to help better control their symptoms via therapy and/or medication. The majority of these people said that the reason they currently have no access to professional help is either due to an unsupportive family or financial struggles. Which is exactly what we’ve been trying to tell anti self-dxers all this time. Both of these things make it impossible to see a professional, leaving a lot of people with no choice but to try to help themselves.

Many people also mentioned the fear of stigma and/or opening up to doctors. This was the main reason that some did not want to be professionally diagnosed. And if you ask me, this is something that needs more recognition. Fear, anxiety, paranoia – these are all incredibly valid feelings to have when presented with the notion of speaking to a medical professional, especially when it’s one’s mental illness that is causing the anxiety or paranoia. Telling people to “get over it” (even just by telling them to see a professional anyway) is actively dismissing their disabilities and failing to acknowledge the very real fear that they experience. Honestly, anti self-dxers, how would you like it if someone told you to get over your mental illness and force yourself to do something that scares the living shit out of you? I’m certain a lot of you with anxiety can understand just how difficult it is to do that.

Going back to the fear of stigma, this is a perfectly valid concern as well. Stigmatized diagnoses like autism and borderline personality disorder can actually interfere with a person’s life, such as with being able to medically transition as a trans person, and being able to adopt children.

Really, the point here is that it’s entirely up to the individual whether or not they want professional treatment. I see many anti self-dxers claim that people who self-diagnose but do not wish to seek treatment are somehow just “faking for attention”. What they fail to also acknowledge is that many professionally diagnosed people do not want treatment either. Some people are only professionally diagnosed because they’ve been forced into it. Or maybe some people willingly sought professional treatment at some point, but now want out for their own reasons. This is no more or less valid than people not wanting treatment to begin with. It can be scary. People can have a lot of reservations regarding professional help.

These are about the only points I wanted to touch upon, but if anyone else has any questions about the results, feel absolutely free to contact me, and I’ll try my best to answer. I made all of the questions on these surveys completely open for people to answer as freely as they liked (save for the question about age, which was multiple choice), so it’s difficult for me to make exact statements about the results. Everything’s a little everywhere right now! But I have read each response individually, and I can scroll through the summary in order to grasp a general idea of the replies I’ve received. So, as I said, I’ll try my best to answer any further questions.