OKAY TUMBLR, LET ME TELL YOU A THING
- there is a difference between people who self diagnose so they can cite a mental condition they do not have as an excuse for being a dick, and people who self diagnose because it’s their only fucking option
- not everyone can afford a medical or psychiatric professional
- a lot of those professionals make mistakes and some of them lie
- the older you get, the more difficult it becomes to get a solid diagnosis from a professional, especially if you’re seeking a yes or no answer about things pertaining to the autism spectrum (most of those tests are aimed at children and the doctor I was going to basically ended up asking me if I thought I was on the spectrum)
- I fucking diagnosed myself with OCD when I was eleven years old after watching a few episodes of Monk, and several doctors have confirmed that I was right. if an eleven year old can figure that shit out from a fucking tv show, a teenager or adult with the whole fucking internet at their disposal probably stands a pretty good chance
- there are a lot of good sources for information online as far as symptoms and criteria go, and people who suspect they have a disorder generally do all they can to find out for sure whether they do or not. Someone saying “I have self-diagnosed depression” does not automatically mean “I matched two of the symptoms of depression on a quizilla quiz.”
- don’t automatically invalidate someone’s condition just because they’re self diagnosed
- don’t
- do
- that
- ever
- please
- just
- fucking
- stop
self diagnosis, google, and you
As happens every so often, someone has recently decided that the many of us who don’t have adequate access to the medical industrial complex should be further shamed because we’ve done our own research and identified a possible source of some of our struggles. The thesis? That unless at least one professional medical practitioner has evaluated and diagnosed you, any problems you might be having are (still problems!) but not the result of any particular disorder or otherwise diagnosable problem (‘cause if it were, you’d have been to see a doctor! Yay circular logic!).
Now, while I could talk about the inequities in accessing the medical industrial complex that divide along lines of class, race, ability, etc., and aggregrate based on any intersections of oppression. I’m not really going to talk about this, because other people have capably written about these topics.
(and, I wanna say that even as a canadian, the class issues surrounding doctors are still important. because, for the most part, mental health isn’t covered by our universal health care. and there are *still* problems of access with being poor, being rural, being a poc, etc.)
What I am going to talk about are doctors. Who are these magicians such that they are granted the ability to say “yes, you have this problem” or “no, you do not have this problem” and actually *make it so*? Because, everyone knows, that unless something is perceived or apprehended (ie., diagnosed) by a doctor, it couldn’t possibly exist. This is how powerful these strange and mystical creatures are.
The first thing for a doctor to be a doctor is to get a medical degree (MD). In canada or the usa, this usually means a prior degree (can be any field, usually science related). So. If the person is motivated, four years for one undergrad, and 3-4 years for the medical degree, and then residency. Takes a long time. Psychiatry, in canada at least, is a speciality requiring a medical degree. So. Yeah. Estimated time to complete, 12 years. Clinical psychology can take less time but often requires an MA and/or PhD.
So. Look at all of that education. These people must obviously be better than me, for diagnosis and knowing how my body works. Yes? Maybe. *Maybe*
Some problems have a clear physiological basis. Some hormone is too much (or too little). Some part isn’t doing what it should be. Maybe something is missing. Maybe extra. Maybe you can see it with your eyes (microscope included). Maybe there is a definite test with a simple binary yes/no answer. Maybe. Maybe the condition is common and well-known/understood. Maybe your doctor is exceptionally good at their job. Maybe. Maybe. Maybe.
However, if we are talking about invisible (maybe mental or behavioural or even physiological) disorders. Are they better? If a person with fibromyalgia says they are in chronic pain but some doctors don’t believe the condition is even *real*, what are they to do?
Some (many) of us turn to google. Or some other search engine. Or maybe even go directly to wikipedia. In a recent point-of-care study, it was found that about 46% of doctors used browsers like Google or Yahoo! as an information resources to treat patients. 42% used specialty sites like WebMD or MayoClinic (also check out MedLine for good info). Now the biggest source of info was medical journals (68%), which, if you go to a school large enough to have a medical school, you might have access to the same journals. Or you might know someone with access. The one other large source, colleagues, is definitely not something it would be easy for a non-medical professional to access.
However, the study makes it clear that if you have browser and internet connection, you have access (at least) to two main sources that *doctors* consult when treating or making a diagnosis. Not too bad. Especially since accessing this is much, much, much easier and cheaper than trying to see a doctor. You also don’t need a medical degree. Moreover, if you go this site to see advanced google search features and tips, it is possible that you can get better at googling than doctors (trust me, speaking as a librarian here, how much even university students don’t understand about using google is amazing). Google, like all things, is a tool that is only as good as the user.
But. Even if you don’t learn advanced search techniques, how good is google for diagnosis? Another study by Tang Hangwi and Jennifer Hwee Kwoon Ng found that a simple three keyword search was able to make a correct diagnosis 58% of the time.
Let me repeat that:
The most simple google search possible correctly diagnoses 58% of the time.
Even more interesting is this conclusion: “Our study suggest that in difficult diagnostic cases, it is often useful to ‘google for a diagnosis.’” (Tang and Ng 2006, 1144).
So.
If it is the case that us regular folk have access to 2/3 major sources of information doctors consult (maybe 3/3 depending on your access to a research library) and that just googling will give a correct diagnosis 58% of the time, then what *exactly* is the issue with self-diagnosis?
Could you be wrong? Yes. But so can the doctor. Especially if they are using the same sources…
Are you talking resources from other people with ‘real’ diagnoses? Um… no. How could that even work? Since most of the time, if you are trying to get accommodations, you usually need to provide proof from a medical professional.
But maybe you’d be able to find some strategies for coping. Maybe find a community of similar people with whom you can commiserate. Maybe get some social support. Instead, you bump up against people who, because of the legitimacy they gain from being diagnosed in the medical industrial complex, have set themselves up as gatekeepers. While shaming and policing.
Still…
My hope is that this post at least serves to poke a hole in one of their common arguments.
I’ll always trust my own understanding of my body/mind and my skills as a researcher (something I’ve done professionally) over an industrial complex that has consistently shown itself to be racist, classist, fat phobic, ableist, etc. etc. (not to even speak of its disgusting exploitation of poc bodies for medical advancement).
A General primer for those seeking more information on Autism (focused toward those seeking self-DX, paper DX, or clarification on a new DX)
The problem with autism diagnostically speaking is that most people are diagnosed on the way they present; in other words, how they seem to and affect other people.
Autistic impairments and salient differences to me at least seem threefold: sensory, cognitive, and social. I have less of the social impairments, but that’s only because i spent most of my life misdiagnosed and had to fake NT to survive. Sadly, social impairments are the #1 thing most diagnosticians and laymen go to for diagnostic criteria.
What affects most actually autistic people the most and leads to the rather secondary symptoms of social impairment (IMHO) is sensory and cognitive issues. Since you’re probably going to find the most information on social issues, “theory of mind”, “empathy quotient” and other psychobabble bullshit, I’ll mostly talk to you about the other two (and a half).
The sensory issues can manifest in many ways.
Oversensitivity,
UNDERsensitivity(this gets relatively little ‘play’ in many convos about sensory issues),
blending of senses and synaesthesia (smelling colors, hearing tastes),
sensory defensiveness (usually benign sensory information processed as an “attack”, causing flight or fight and anxiety response),
inability to process sensory information in a meaningful way (which also overlaps with cognitive impairments in cases like
prosopagnosia [impairment to ability or inability to recognize faces],
general agnosia [inability to recognize objects],
Central Auditory Processing Disorder [impairment or inability to understand auditory information, especially voices; inability to screen out background noise, impairment of ability to separate pertinent noises from unimportant noises],
and many more disorders like these can certainly manifest separately from autism spectrum disorders; they just tend to be rather commonly comorbid in varying degrees and in various combinations.
The cognitive impairments share a lot with disorders like ADD/ADHD and dyslexic disorders, in that they involve both inability to regulate attention and the difficulties in having an inherently different way your brain tells you “THIS is important; THIS isn’t important and you should ignore it”.
The difference between autism and add is that the hyperfocus elements are more pronounced and there is generally less internal motivation for a lot of autistic people to do things like take breaks in order to go to the bathroom or eat, although for some people with severe ADD this is not the case. Many, many autistic people, especially those without speech delays in early childhood, are misdiagnosed with add or similar learning disorders/challenges.
Other cognitive issues particular to autism (to the best of my knowledge) is the high retention of information that is especially of interest to the autistic person, and the inability to retain information not of interest to the autistic person. this is executive dysfunction, and it isn’t a matter of lack of desire or procrastination.
I cannot stress this point enough. Desperately wanting to complete a task OR even to participate in an enjoyable activity and being utterly unable to is not a sign of weak character, but due to brain differences inherent in autism.
This brings me to the last element of autism spectrum disorders that are generally unremarked upon in diagnostic criteria: movement disorders and difficulties.
Dyspraxia is neurological movement planning and execution disorder often seen in addition to autism spectrum disorders. Examples: what you intend to do is grasp the doorknob and turn it, thereby opening the door; what actually happens is you miss the doorknob and instead hit it with the back of your hand, leaving a painful bruise. What you mean to do is pick up the card on the table; what actually happens is that you grasp the card too tightly, bending it or folding the corner, and/or dropping it.
Another way these interact with attention regulation difficulties is that sometimes visually seeing objects will prompt an action-i.e., you see a can opener, and you begin to open cans without considering whether or not a can needs to be opened. this can also manifest less overtly: I often find myself brushing my teeth if i enter the bathroom, whether or not i had planned to do so. If something has buttons on it, I’ll probably push them. These are all ways in which executive dysfunction can manifest.
And before the obvious point of “everyone does this sometimes”, this is not about doing these things sometimes. this is about these issues significantly impacting your life in a way that requires modification, self-help, help from another person, understanding from loved ones, workplace accommodations, school/learning accommodations, medication, therapy of various kinds, or really any sort of intervention to increase quality of life and happiness of the person.*
So anyhow, there’s a starter for anyone who is trying to understand whether or not they may or may not have autism spectrum disorder. It’s very hard to try and qualify the way you’ve been since you were born and think of it the way that someone else would see it-also one of the cognitive difficulties I didn’t go over.
*you may notice I don’t use terms like “increase functioning”, “productivity”, or “independence” because fuck that noise. Standards disabled people are held to are ridiculous constructs that no one would hold an abled person to in a million years. Like, I *could* live if everyone I care about, love, or depend on suddenly evaporated but like WHY WOULD ANYONE EVER WANT TO LIVE THAT WAY?
Diagnosis elitism
In today’s news, the moderator of I Bet Mitt Romney thinks that (1) there is a strict division between self-diagnosed mentally ill people and professionally diagnosed mentally ill people and (2) self-diagnosers are responsible for prejudice against mentally ill people.
Presently, in terms of my neurology and mental well-being, I have professional diagnoses of PTSD, OCD, dysthymia, generalized anxiety disorder and social anxiety disorder.
Based on reading the words of many autistic people online and talking to a shit-ton of autistic people offline, several of whom identified me as autistic before I said anything about autism, I’m pretty sure that I am also autistic. I’ve written a lot about the stuff I experience in terms of how I experience sensory processing, among other things. I know what the non-social traits associated with autistic spectrum diagnoses are, and it is on the basis of those that I’m pretty certain I’m autistic. So I’m also trying to figure out how to navigate getting to and paying for neuropsych testing (which will hopefully also include testing for ADHD).
I also think that I might experience hypomania, and since I’ve already got documentation for dysthymia, I want to be re-evaluated to see if some bipolar-spectrum diagnosis would fit me better. So one could say that I’ve self-diagnosed with cyclothymia.
As I hope is obvious, neither of my self-diagnoses involve a sense of “lol I’m so bipolar” or “awkward because autistic lol!” And I do want formal evaluations for all of the above things. The assumption that “lol I’m so bipolar/ADD/OCD” is what self-diagnosis is like is wrong—the people who say things like that DO NOT seriously believe they have the illness in question BECAUSE THEY ARE MOCKING PEOPLE WHO DO.
There is not a strict division between self-diagnosed and professionally-diagnosed, either. I have professional diagnoses for some things, and for my self-diagnoses, I WANT evaluations so that I can actually access services (in the case of autism) and get better mental health care (in the case of the others). What prevents me from being evaluated for those things right now is NOT (YET) HAVING INSURANCE and NOT (YET) HAVING MONEY. So unless you’re willing to pay for all my evaluations and transportation to them right now (my PayPal and Gofundme are in my sidebar), you have absolutely no right to criticize that I FEEL UNDERSTOOD (and not like a freak) among autistic people, people with ADHD, and people with bipolar-spectrum conditions.
So can we stop with the diagnosis elitism and the “self-diagnosers should fuck off”? Aside from distorting the facts about what self-diagnosis involves, it’s classist as hell.
personal/asd
i’m 46 years old. it has only been over the past year that anyone ever suggested i might have aspergers/autism. i have been in and out of the public mental health system since i was 20 years old. i have seen a lot of “professionals” and none of them ever mentioned asd. my most recent therapist explained to me when i asked about getting an official diagnosis that “most people with aspergers can be found at places like the special olympics” and then said “did you ever see the movie RADIO? that’s what someone with aspergers is like”. i have not gone back to that therapist.
my current psychiatrist responded to my questions about getting an official diagnosis asked “do you have the, uh, swearing?”, demonstrating that he did not know the difference between aspergers and tourettes. i tried to explain to him what my symptoms were and he nodded and prescribed me risperdal (an antipsychotic). he is still my doctor.
so until i can afford to see a qualified professional i am “self diagnosed”. it frightens me to write those words. i am aware of the contempt some people have for those of us who suspect we have some form of autism but do not have an official diagnosis. believe me, i wish i had access to decent health care. i wish i could talk to a doctor that had at least taken the time to browse wikipedia before prescribing powerful drugs that i don’t need. i wish i could know for sure that part of why my life has been so fucked up and difficult, or why jobs and relationships never lasted, or why even though some people think i’m a genius i can still not successfully navigate a supermarket is something neurological and not just that i’m a fuck up.
the more i learn about aspergers the more my life makes sense. and the less i feel like a failure. i’m learning to accept my limitations and my gifts. i am finally figuring out how to navigate through a world that has always seemed foreign to me. at the same time it’s fucking heartbreaking to look back on all the shit i went through knowing that if i’d had access to better health care i might have saved myself and those who were brave enough to love me a great deal of pain and confusion.
and i want to thank anyone here on tumblr who has shared their experience, information, and perspective regarding these issues. especially the ones who have done so with grace and kindness. your words help me, and in turn help those around me.
“Annette Lewns has more experience than most of the different ways in which boys and girls with autism are treated. Her 14-year-old son, Ryan, was diagnosed when he was three and a half. But doctors refused to diagnose her 12-year-old daughter, Rachel, until she was nine. "What angers me is that for years I was dismissed by doctors purely because Rachel was a girl. Ryan was spotted very quickly because the autism symptoms that doctors look for are so male-orientated," said Lewns. "But Rachel's autism was hidden unless you knew where to look for it. "Rachel could express herself, she had a couple of friends and understood emotions if someone was at an extreme: really upset or really happy. But you didn't really have to look too hard to see she didn't genuinely understand emotions or relationships: she was just mimicking scripts and scenarios from TV." "The doctors failed time and time again to see through her coping strategies. I fought for years but I was confronted with a wall of disbelief and scepticism. They were simply unable to understand that a girl might present differently to a boy." While Ryan's condition was acknowledged by their local authority, and he is now at a specialist school, Rachel continues to struggle at a mainstream school. "Ryan is being taught all sorts of tools and techniques to cope with his condition but Rachel is not," said Lewns.”
—I cannot believe people are saying that there’s nothing sexist about how diagnosis work. Yeah, demanding that I and other women pay for diagnostics when we know that how our autism manifests will likely be ignored by doctors is sexist. I’m pretty sure that if you pay for the diagnosis and it comes up negative because the doctor doesn’t believe that people can hide stereotypical autistic symptoms you do not get the money back.
And oh hey, this type of shit happens in men, too. If you can play neurotypical, no matter how much it fucks you up, it’s super hard to get a diagnosis.
How can we fight stereotypes of autistic people while denying that that stereotype dictates who is and isn’t diagnosed?
(BTW credit for posting the link goes to squidward-sheeran)
in the context of eating disorders, let me remind you that the “medical definition” of anorexia requires you to be underweight to qualify. if you’re not underweight and anorexic, if you’re lucky, you get diagnosed with “eating disorders not otherwise specified” which is a great big help to people suffering because ednos is a catch-all and does not give guidelines that can help people to get the treatment for their actual condition. if you’re less lucky, you get told that you can’t have an eating disorder because you’re not underweight, and if you’re especially unlucky, your doctor tells you it’s probably a good thing you’re trying to lose weight. self-diagnosis can be a very powerful tool for people identifying what is wrong with them and what help they need.
does my support for self-diagnosis mean that there are probably a bunch of people who romanticize illness (particularly mental) saying that they have something they don’t? sure. but i’m okay with that. i would rather allow for people who are desperately in need of whatever help they can find getting their voices heard than to quash everyone because of a select group who think being sick is something it isn’t.
The problem with self-diagnosis
If you feel you have a mental health problem and you are diagnosing yourself, I mean… that’s alright I guess. The big issue here is that if you diagnose yourself and don’t follow it up with a professional diagnosis and get yourself help, then you’re a douche. Getting help is hard. Even if you’ve been diagnosed by a professional, getting help and taking the next steps to recovery is hard. But saying you’ve diagnosed yourself with, for example, bipolar (even if you really have had manic and depressive episodes and could very well actually have bipolar) and then NOT DOING ANYTHING ABOUT IT IS NOT OKAY.
This has been my opinion and I would very much like to hear yours.
For those of you who wanted a rebloggable version.
Alright, I’m not going to try and shorten this answer, so I hope you take the time to read this.
I want to say thank you for coming to us with this, I like getting the chance to explain why I’m such a strong supporter of the things I advocate.
Off the bat I have to say that I support the rights of the individual to the highest degree. You have every right to select your own treatment plan, whatever that may involve. It is always up to you how you go about handling something of a delicate nature, such as a mental illness.
The reason I do support getting a diagnosis from a medical professional is because it can help take the edge off for a lot of people. It helps to feel less alone, less “crazy” if you will. Personally, my diagnosis was like lifting a weight from shoulders. I saw my life in a new perspective and had an explanation for so many things that I couldn’t explain before.
Bipolar disorder has the highest suicide rate of any mental illness. This disorder literally kills. Suicide is always preventable and bipolar worsens as you age. There are people who are in their 50’s - 60’s, that wake up on day, and decide they don’t want to deal their day to day any more, so they take their lives. After looking into their history and talking to family, it comes to light that they more then likely had bipolar disorder. A disorder, that with the right combination of treatment options, can be kept under control and it’s suffers can go on to lead normal lives. But they we’re never diagnosed. Maybe they didn’t have that option, maybe it was unknown to them. But they’re gone. And they shouldn’t be. The flip side of that, is there’s a 15 year old, who is scared and feels alone and feels without hope, and they do the same thing. And there’s a parent who has to bury their child, because they just didn’t know. One trip to the doctor, maybe an hour or two answering questions, and a diagnosis could save lives. Even if that person forgoes medical treatment, and/or therapy , knowing is half the battle. When I hit really low points, there’s comfort in telling myself it’s apart of the disorder, it will go away, things will improve, don’t make a permanent action out of a temporary thought. But for someone to go through that, not knowing the have a certified disorder and things can get better, that they’re not alone. It’ll do damage that’s irreversible.
That might seem like a really dramatic explanation, but it’s the truth. Actually having the diagnosis can make a worlds difference.
Now on to the part that I hope doesn’t offend you, but I have to say.
If someone has been diagnosed bipolar, and they chose an alternative way to medicate and treat themselves, that’s one thing. They know their diagnosis, if things get really bad, they have that diagnosis to fall back on. I can’t really explain it, but it’s different. I guess it’s because a doctor has made it valid, that when they go on their own path of treatment, it’s more acceptable in a way. But for someone who hasn’t even been diagnosed to say that they’re on an alternative treatment plan, and doing fine, is kind of like a middle finger to all of us who have been diagnosed and/or are on medical treatment plans.
If I hadn’t been diagnosed, I would never in a million years go around saying I had something. Even if I was 100% sure, that’s not my place. I don’t have the training to diagnos myself, no website can diagnos me, other people who aren’t medical professionals can’t diagnos what I do or do not have. Not to mention there’s four different “types” of bipolar. It’s like a person with bipolar II, when they have hypomanic episodes, it’s the most intense feelings they’ve ever had. It feels like full blown mania to them, because they don’t know the difference feeling wise, but a professional could tell the difference. Not to mention the possibility of having another mood or mental disorder all together.
In my eyes, you don’t know that you have bipolar disorder, but you’re saying you do. It’s not something that someone should be OK with just thinking they have it. If I were in your shoes, I’d be in a psychiatrist office so fast praying that to get a negative response on any kind of mental illness.
I’m not trying to a be a bitch, I’m really not, but this disorder has ruined my life. It’s taken away so much from me, and there’s people out there doing far worse then I am. This illness takes lives, in all the senses. It can remove a person from life and remove the life from a person. People say it’s like “hell on earth” but to me it’s more like “hell in your soul.” So for someone to say they haven’t been diagnosed, but they’re doing fine on their own, really is a ‘fuck you’ to myself and the millions like me.
I had to get all that off my chest, because it’s something I’m very passionate about.
I’m not by any means tying to doubt how you feel, or the likely hood that you have a bipolar, it’s perfectly possible, and this isn’t an attack on you, it was just an opening for me to get that opinion out there.
Basically, if you don’t want to be on medication or get therapy if you’re diagnosed bipolar, that’s fine, you have every right to sustain from that. Obviously, I’ll always suggest getting a proper diagnosis, but if you opt not to, I’d refrain from saying that you have bipolar disorder in the future.
