Self diagnosis thread

I didn't see a thread like this, so I thought I'm make a little discussion.

Some questions to get things going:

1. Do you self diagnose? Why or why not?
2. How do you feel about self diagnosis?

Personally I am not very fond of self diagnosis in general. I probably have been considered part of the anti self-dx crowd on tumblr. I know there are logical reasons why self dx is important. However it's something I feel should e approached with caution. Not something to celebrate, or use in place of actual care. When I was a teenager I self diagnosed myself with every mental illness under the sun. I was distressed and I desperately wanted to understand what was wrong. Of course mixing with my inability to see my actual probems as abnormal (anxiety, depression, history with bullying, not that great home life) and in a weird way wanting to "fit in" with my friends who came from even shittier home lives, had to be hospitalized for their mh issues, etc. I don't think I have to say that this Did Not End Well. I don't want to get into details though because it still feels too personal.

With that said I do self dx with dyspraxia, because I have about 3/4 of the symptoms, and due to the fact that I was very premature I have over 60% chance of having some sort of coordination disorder such as dyspraxia anyways. I self dx because nobody has ever bothered to connect the dots on my symptoms, and I'm not sure exactly how to get an adult diagnosis.

 

1. Whenever I've self-diagnosed, I've later taken that to a professional and been like, "I think I have [disorder] because [reasons]," and all but once I was right. The one time I wasn't right was when I thought I was having panic attacks, and when I described them to my therapist, she told me they're actually sensory overloads and suddenly a whole lot of shit made sense. And that actually led me down the road to getting diagnosed with autism, so yay! For awhile I guess I was technically self-diagnosed with autism, 'cause even though my therapist was like, "I think you could be on the spectrum," it was my own research that made me go, "Holy shit, I think you're right," 'cause she never actually diagnosed me with it. But then I got an official diagnosis for validation reasons and also in case I ever need accommodations in the workplace, and my sort-of-self-diagnosis was confirmed as correct.

2. As long as it's more in depth than, say, "I took an online quiz that said I have ADHD so I have ADHD now," I'm not super bothered by it. I understand that, for a variety of reasons, people can't access mental health professionals, and that reading up on their symptoms and finding a likely cause that fits is the best that they can do. And if someone does that and finds coping strategies that help them deal with life through that, and find a name for what's going on with them that makes them feel less broken, I can't really say anything too negative about it.

On the other hand, many disorders can look like each other, and it could be the case that you've self-diagnosed yourself with a similar but incorrect thing. It's also very problematic if you try to get medication involved. I'm not sure if you actually can get medication involved without a diagnosis, but I definitely would not do that without seeing a professional first! And it's possible that some coping strategies you come across could actually be maladaptive, if you've mis-diagnosed. Not that professionals always get it right either, but at least they're trained in this shit.

I also think, self-diagnosis and self-help can only do so much, and sometimes you do have to get professionals involved. Like, I don't think I would be nearly as good as dealing with intrusive thoughts and compulsions as I am now if I hadn't seen a therapist for my OCD. It also would've likely taken a lot longer to discover that I'm autistic. So I think that self-diagnosis is quite limited in terms of how much help it can actually get you.

I do also know a person who abused two of their partners, and then self-diagnosed with autism and BPD after both their partners got the fuck out of dodge, and is basically saying that nothing is their fault because they have autism and BPD so it's not their fault they were abusive. Which is UUURRRGGHHHHH don't do that. I mean they could actually have autism and BPD, but that doesn't excuse abusing people! I am offended by the notion that being autistic absolves me of blame should I harm someone. Ugh!

So uh. Thoughts are:

• If it's informed and well-researched and isn't being used to excuse shitty behaviour, go ahead
• There are however risks of mis-diagnosis and of taking on maladaptive coping mechanisms
• Self-diagnosis is fairly limited in terms of helping you recover to deal with stuff
• Not everyone can access health care professionals, which is fucked up and shouldn't be the case, but sometimes self-diagnosis is the best they've got for now
• Sometimes people are shitty and use self-diagnosis to excuse shitty behaviour (but there are people who do that with professionally-diagnosed stuff as well, I'm sure)

So I guess overall, I'm fairly positive towards it, provided it's well-researched and informed. I think a problem can be that young people especially know something's up and are desperate to know what it is, so they grasp on to everything under the sun that looks like it might fit, so they can feel less broken. And sometimes, they feel like it might make them special or unique, or make them fit in more to say they have some kind of disorder. I think there are a lot of factors that go into why someone might self-diagnose, so I can't say it's good or bad either way really, because it's very context-dependant. That said, I suppose I lean sliiiiightly more pro-self-dx, but again, it has to be well-researched, not just reading a few blogs or articles and taking an online quiz and going, "GUESS I'M AUTISTIC NOW!!!"

 

1) Currently self-DXed as autistic. I show a lot of signs and both my younger sister and youngest cousin are on the spectrum. Currently not diagnosed because my depression/anxiety treatments are more important right now and my current therapist is mostly unfamiliar with autism. I'm also really hesitant to self-diagnose despite my symptoms because several of the more social ones could be explained by my shitty childhood and various traumas, so I always throw in a caveat when I discuss it because I might be wrong. I've used it mostly as something I can look at what other people do to cope for the symptoms I share and as a source of validation for some of the Weird Harmless Stuff I do (like stimming). The only real reason I want an official diagnosis is validation, especially because being wrong about it is something my brain likes to latch onto during my anxiety spirals.

2) I'm ok with it as long as people doing it are being thorough. Lately I've been watching a former friend change through self-diagnosis like underwear because every time they find something with a symptom they share they add it to their identity list and that... no. (Ex: they've decided they have a personality disorder because a common symptom is needing frequent attention and validation. They haven't decided WHICH personality disorder and haven't done any real research beyond what they see on their dash). But I've also known people who did serious research before coming to their decision (my dad's self-DXed as antisocial/a sociopath and re-examines his decision pretty much every time new information about it comes out) and find it to be a decent band-aid solution when a real diagnosis isn't feasible.

 

1. Kiiiiiind of? I have private beliefs, which I don't profess as public statements. So I'm personally quite certain that I'm autistic, and I think dysthymia with episodes of major depression ("double depression") describes me better than my technical dx of "recurrent depression" (based on a misunderstanding of the timeline I gave a consultant psychiatrist a while ago.

But the thing is, I've been depressed since I was a child, and I wasn't diagnosed until I was eighteen. Same goes for having had an eating disorder. I was bulimic for four years before getting diagnosed, because I desperately wanted help, but was terrified of my mother finding out; I waited until I was eighteen to try to make absolutely sure that my confidentiality wouldn't be broken (I'd seen friends under 18 being subjected to breaches of confidentiality before). The criteria for bulimia are pretty objective and obvious, and I knew that I met them. Depression is more nebulous, but I knew I met the criteria for that, too. I used measurements like the BDC and the PHQ to monitor my depression, and consistently scored in the moderate-to-severe range.

(am just gonna mix up question 2 into this, since it's coming in anyway)

Before my official diagnosis, I was absolutely tortured by the stigma against self-diagnosis. I knew I needed help; I wanted help, and the implication that there was nothing wrong with me because I was as yet unable to get help was hurtful. But more significantly, it gave me a mechanism for self-destructive denial. If I wasn't depressed, then I had a right to beat myself up over feeling so bad. My self-esteem was in the toilet, because the disabling elements of my depression were just plain old laziness, failures on my part. And if I wasn't bulimic, then why not just carry on what I was doing? If self-diagnosis was invalid, then by definition I wasn't bulimic, so there was no reason I should stop bingeing and purging multiple times a day.

I know this thinking is distorted; I'm not suggesting it as synonymous with opposition to self-diagnosis. But to be completely dismissive of self-dx, even by teenagers, creates a cultural environment that enables people to keep on silently suffering, and have their pain dismissed.

On the other hand, I have definitely seen the teenager-self-dx-of-everything-in-the-damn-book phenomenon. But that's not representative of the kind of self-diagnosis I support. I guess, on some level, self-dx should be 'peer-reviewed': not just shared with one or two close friends who don't know any more than you do and confirmed by them, but discussed with larger communities of people with the condition in question, including both people who know you and people who don't.

Since realising that I'm probably autistic, I've had some leanings back towards my 'nope, I'm just an attention seeking self dxer' feelings, but those have been considerably reduced considering that a. I did actually study psychology at one of the world's top universities for three years, and b. my latest psychiatrist thinks I'm not autistic because I laughed at his jokes, which was a nice reminder that psychiatrists don't always know what they're talking about.

tl;dr I'm in the 'sure, but do it critically, do it carefully, and do your fucking homework' camp.

 

1. Yes and no. I was diagnosed with depression and ADHD at 15, and a decade later I'm coming to question parts of that diagnosis, or at least suspect that it's somewhat incomplete. Half because, well, I was a teenager at the time and I am no longer a teenager, and half because that doctor was a whackjob. Also I have no way to get to a doctor right now and giving the beast a name is helpful in trying to find non-Rx ways to cope.

2. I think it's useful in some respects, like I said above with giving the beast a name. Most of the people around me are self-diagnosed in some way, but they use it to try to cope UNTIL they can get to a doctor, not IN PLACE OF seeing a doctor. Like, I self-DXed with PTSD and dissociation issues (probably related; I'm still reading about it), but I'm not going to attempt treatment outside of "hang onto your butt and ride it out" without consulting a Ph.D about it. I feel like I'm explaining this badly, ugh.

 

1) In practice, yeah, I do, but it's sort of a minefield for me. I cannot trust myself, I cannot trust my judgement, I cannot trust my feelings or my assessment of my feelings or, god forbid, my memory, so any kind of self-dx is immediately suspect. I'll go through phases- at one point I'll be pretty sure that yes, I do have whatever it is I suspect I have, and then the next day or the next week or the next minute I'll be like 'what am I thinking, of course I don't have [thing], what a fucking ridiculous idea that is'.

2) Everything I could have said has pretty much been said by others. When it comes to other people, I am basically in agreement with 'if you're sensible about it and do research and don't try to self-medicate with actual medication, then why not'.

 

1. Sort of. I'm personally unwilling to concretely say "I definitely have (x)" unless/until I'm professionally diagnosed. I could be argued to have self-dxed as BPD, but given that my psych later said it's quite possible (even probable) that I am, and that I don't say I definitely have it...yeah. Like, if asked about my brainweird, I'll say "I have autism, bipolar disorder, generalized anxiety disorder, and ADHD, and I might have BPD as well but I'm not totally certain," basically.

2. I think it's a good first step, and can have some validity if people actually do the research. The problem is that a large chunk of the people on Tumblr and in other such spaces who self-dx (especially with autism spectrum disorders and personality disorders) don't do the research, and often give contradictory claims. I've also noticed that self-diagnosis seems to be kind of a trend-based thing among those crowds. Autism was "in" a while back; now BPD seems to have taken its place as the hip new excuse for all your actions mental disorder.

 

Spoiler: A rant about self-diagnosis/some things to think about/Life Events altering my opinions on the topic

I'm 22. I've been mentally ill for at least fourteen years, probably more. If I'm autistic, then I've been autistic for 22 years. In my medical notes, there are several pages of psychiatric information ranging from misunderstandings to out-and-out falsehoods. My current psychiatrist is pursuing a radically inappropriate course of action, based on stereotypes and misconceptions about women, autism, and mental illness.

There are tons of books out there by, or about, people who now know that their problem was x all along, but who detail years, or even decades, of misdiagnosis by highly-educated professionals who make mistakes so glaringly obvious that the audience cringes in fear at the prospect of having a trusted expert make such profound, basic errors. I don't want to end up as one of those people. I've been studying this field for the majority of my life, trying to understand what's wrong with me.

Apart from a brief phase of confusion in my very early teens, where I wouldn't say I even really made a self-dx (just had some suspicions), all of my self-diagnoses so far have been completely accurate. Autism is the only one yet to be confirmed, and I have very good reasons - which a variety of friends, family, acquaintances, and experts have agreed are good reasons - not to trust the guy currently saying it's a total impossibility. Going by my history, my self-diagnosis process is pretty reliable, and is in no way "deciding you have x because of an Internet quiz" or "after reading the Wikipedia article" or "webMD". Years of general and specific research have gone into it. I'm reaching a personal turning point: do I really need to continue using the caveat "but of course I don't want to self-diagnose" to dismiss myself? Do I really need to wait for months, or years, before the NHS stops fucking around? Because that doesn't seem like a viable option right now.

Self diagnosis may not be the most reliable approach, but professional diagnosis isn't infallible either. Its reliability, in some instances, is quite low. I've seen plenty of instances where the reliability of self-dx is very low, but it's only recently that I'm personally starting to experience the horror that is unreliable professional-dx, and at the same time, I'm seeing more and more reliable cases of self-dx.

tl;dr professional diagnosis is not always correct, and is sometimes even disastrously wrong, and you can easily dismiss that as unlikely/unimportant until it starts happening to you.

 

My polymate self-diagnosed and then as it turns out xey were totally right when confirmed by a therapist. And occasionally doctors have ulterior motives to be sweet misguided and hella wrong: my psychiatrist was basically sponsored by ADD medication manufacturers and really pushed that pill on me before he listened to me and my actual problems. I knew he was a quack the first time and told him so.

I've been misdiagnosed once but the medication sort of helped. Problem: that particular misdiagnosis can affect how eligible you are for the bar. The paperwork involved with that was intense, trying to clear that up. Currently I have some diagnoses but I don't even remember what they are, I just remember what I've been told I have which may or may not be formal. Also thinking about pursuing some formal am-I-autistic work because holy shit is it so explanatory. For the most part I just use the same coping skills for everything though? The name for the brainweird to me is less important than how to fix the brainweird.

 

Professional misdiagnosis can also easily have more lasting/serious consequences - for an easy example, there's a distressingly common narrative which runs along the lines of *doctor sees patient is depressed, doesn't ask about anything else, prescribes SSRIs* *patient is actually bipolar, SSRIs trigger manic episode or other Bad Shit*. Whereas if you self-diagnose and you're wrong, that may be annoying or distressing, but it's not likely to have as frequent and disastrous results as, for example, being placed on the wrong class of meds or given the wrong type of treatment.

Also - 'don't self-dx on internet quizzes' is a good message, but you can find a lot of the professional psych literature online (including the DSM), and reading and researching that, in conjunction with knowing your own brain better than other people, is likely to make you very well-informed (quite possibly more so than any random psych). (Maybe this is less severe in America, since people seem to be able to choose their doctors with a greater degree of agency there, so you'll still have knowledge but you might not have to educate your doctor as hard? Here, you just get referred somewhere and assigned someone who probably knows nothing about your disorder(s). Yay NHS.)

 

1. Self-dx as autistic, and seebs-dx autistic, other autistics going yeah you're autistic, being not diagnosed only for "female, intelligent and outgoing" reasons.
generally i'm pretty fucking confident that i'm autistic, but i can maneuver well enough without a diagnosis?

i would like a diagnosis for Gender Dysphoria or whatever it's called now, because I would like to at the very least take testosterone, and possibly eventually deal with chest stuff.
(but i don't think trans stuff counts as self-dx?)

 

I will say, one of the online ASD quizzes (the RAADS-R) that I did was actually given to me during my official evaluation. I scored higher on it with the psychologist though, because she was able to clarify some of the questions, and I'd marked them inaccurately by myself because I hadn't understood them properly. The RAADS-R is an actual official evaluative tool, so if you do do that and get above the cut off (which is 60 or 65?) you're probably autistic.

 

... Thanks for that test, actually. Now I'm not just Seebsian but also informal RAADS-R. Even though I'm girlshaped. This... wow. Thank you. This may or may not have totally changed my life wow okay.

Spoiler: results

Total score Language

Spoiler: results

Social relatedness Sensory/motor Circumscribed interests
Test taken by you on 22 May 2015 157.0 11.0 75.0 34.0 37.0

Threshold values for suspected ASD 65.0 4.0 31.0 16.0 15.0
The average score for males with ASD (1589 people took this test) 149.5 11.9 73.1 35.9 28.7
The average score for females with ASD (1491 people took this test) 164.7 13.1 77.2 42.7 31.7
The average score for males with suspected ASD (10742 people took this test) 145.8 11.4 74.6 32.2 27.6
The average score for females with suspected ASD (14528 people took this test) 149.0 11.1 72.5 36.8 28.6
The average score for male neurotypicals (3601 people took this test) 84.3 6.5 45.0 17.4 15.4
The average score for female neurotypicals (4755 people took this test) 82.7 5.7 41.7 20.3 15.1

 

The questions were really weird.
Like,
they didn't work.
Why were the questions so weird?
and the options were weird.

Spoiler

Scores with a yellow background are above the test threshold values. If your total score is above the threshold it may be worth getting professionally assessed.

Total score Language Social relatedness Sensory/motor Circumscribed interests
Test taken by you on 22 May 2015 104.0 7.0 41.0 33.0 23.0

Threshold values for suspected ASD 65.0 4.0 31.0 16.0 15.0
The average score for males with ASD (1589 people took this test) 149.5 11.9 73.1 35.9 28.7
The average score for females with ASD (1491 people took this test) 164.7 13.1 77.2 42.7 31.7
The average score for males with suspected ASD (10742 people took this test) 145.8 11.4 74.6 32.2 27.6
The average score for females with suspected ASD (14532 people took this test) 149.0 11.1 72.5 36.8 28.6
The average score for male neurotypicals (3601 people took this test) 84.3 6.5 45.0 17.4 15.4
The average score for female neurotypicals (4755 people took this test) 82.7 5.7 41.7 20.3 15.1

 

Huh.
According to this test, I could be (informally) autistic.
(while this would not be a giant surprise, I should retake this test at some point in the future and check. I should also take this test with someone who knows me. And at some point I should do a Seebsian diagnosis formthing)

Spoiler: results

Total score 146.0
Language 12.0
Social relatedness 67.0
Sensory/motor 40.0
Circumscribed interests 27.0

Edit: why is format so hard to keep, dangit

 

but i seem to be good at social and language and the threshhold for 'girls' is higher?

this is making me doubt the possibility that i'm sperg, even though i seem it.

you can be vaguely socially adept right as an autistic?

 

I wish that showing my results to my asshole psychiatrist wouldn't be seen as self-diagnostic silliness, because I'm pretty sure that scoring 100 points above the threshold is significant.

Spoiler: Ritvo results

 

Oh
wait
I'm younger then 16
*facepalm*

 

My two informal scores, since I took it twice, were 127 and 133. When I took it during my assessment, I got 149. I also got the highest score in circumscribed interests that the psychologist had ever seen in her 45 years working as an autism specialist, so that was cool XD