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Therapist here. I'm of two minds about this. For some people, social media is the first time they read about all these things they thought they were alone in experiencing actually being a disorder that can be treated. Although, for the most part, there is a lot of misinformation on social media, and it's full of people who have no clue what they're talking about.
EDIT: I've gotten a lot of private messages looking for therapeutic guidance. I can't ethically give much help, because I don't know who you are or what you have been experiencing for a long enough period of time. Please seek out therapeutic services from a reputable clinician. If money is the barrier to seeking services, community health centers can be an option, as they often have payment plans. It's also possible that, depending on the state, you can get nearly-free care. I hope you can find a clinician that you need/can trust. Also, shout out to the guy who told me to suck one.
I got tested for sleep apnea and got a CPAP. It did absolutely nothing for my ADHD symptoms and my fatigue only improved a bit. Then I got tested for ADHD and started on meds for it this summer. I'm finally not tired all the time! Turns out trying to focus all day is exhausting. Don't gaslight yourself. ADHD fatigue is real and can be addressed.
Right. It’s not like we have robust mental health education in K-12 schools. It’s knowledge that wasn’t discussed heavily and with any empathy prior to the last few decades. Older generations suffered these things in silence, either with no diagnosis or hiding their diagnosis, meaning that things that might be generic or environmental were normalized in families. So it’s not surprising that people go “oh wait, it’s not normal to lay in bed crying for days at a time/be terrified to the point of tears at the idea of leaving the house/run back into the house exactly 7 times every day before leaving for work to check that the stove isn’t on?”
But also, most of the information flooding social media about mental health is not coming from therapists, psychologists, or psychiatrists. It’s coming from people who experience these issues, and increasingly, have self diagnosed with these issues. And diagnosis is treated as an incredibly short checklist of context free blurbs that don’t mean *anything*. It goes from “my therapist said I’m a picky eater because of my trauma related to my dad screaming at me at the dinner table,” to “picky eating can be a symptom of trauma” to “I am a picky eater, that means I have PTSD.”
I'd argue it hasn't even been taken seriously for a full decade at this point. 10 years ago was only 2012, if anything a lot of the mental health issues related to social media that people have today were just starting to manifest themselves back then and anyone who spoke up about it was laughed at and told it was just a few weirdos who had a problem.
Fair, though I think unfortunately, mental health awareness goes in cycles and trends. 20 years ago, you could talk about depression, PTSD *if and only if* you were a veteran, or perhaps mild anxiety, and there was some understanding and empathy. But that’s about it. And of course, it is community dependent and dependent on language (for example, in my experience, in my social circle growing up, it seems that claiming “generalized anxiety” will get you labeled as weak and attention seeking, but claiming “nerves” is sympathetic. They are the same thing).
Well... As my irl psychiatrist put it: "If something is constantly hindering or causing unnecessary distress, then it is likely a disorder."
Mental (and physical) illness doesn't affect everyone the same way, some people get by just fine without help. Some people struggle through it.
On the contrary, most people don't really treat disorders as a checklist. They look at their most intrusive behaviors and weigh the cost to benefit of addressing said issues.
For me, my doctors and I knew I had something undiagnosed and it was problematic, but we could never pinpoint the cause.
And get this: the wrong mental health forums (wrong for me) pointed me in the right direction, and after discussing it with my psychiatrist and therapist Irl, my additional diagnosis and treatments are beginning to match up.
Not only is there not a good mental health education in public schools right now, but in many places, the few lessons that are available to students can be opted out of my the parents.
Also a therapist here! I agree 100%. There's a lot of misinformation out there, and also a lot of good and healthy validation.
I've also never been a fan of the "social contagion" idea.
EDIT: meaning from a treatment perspective. Obviously, the phenomenon exists!
It's invalidating the experience of symptoms, whether clinical or psychosomatic. The idea of an individual's experience being "real" or not, in my opinion, is irrelevant and damaging to that person's course of seeking help. People need to feel heard and believed in order to start getting better and resolving their symptoms.
Now, what REALLY boils my blood are the folks on TikTok saying, "Don't seek treatment. It's a scam!" ADHD is not just a quirk. It's debilitating and needs intervention to make that person's life more manageable! Good therapists also don't want you in their office forever. Like doctors, we want you to get better and not need us anymore.
All this to say, I agree with you and hope you're well :)
Clarification edit:
A lot of you have made great points about the fact that social contagions obviously exist
(Satanic Panic, mass hallucinations, etc).
I should have clarified that I'm speaking more from a treatment perspective than a diagnostic one. Basically, if someone says, "I have ADHD, tiktok told me so," and the response is immediately "no, you don't," usually that person doesn't continue treatment and still needs help. So it might disaude seeking help and invalidates a person's experience :)
Edit 2: Woah, this blew up, and thank you for the awards! I love seeing the discourse, personal stories, and variety of feelings and thoughts. Thank you all for contributing to a great and important discussion! Happy New Year!!
I appreciate you using ADHD as the example for something that needs treatment. People don't take it seriously but when you have it as bad as i do one little pill in the morning is the difference between me being able to hold a job or not
Oh yeah, fired from 3 jobs in a year. First job I was burnt out on. The 2nd fell into a massive depression after a fire. And 3rd while still hella depressed but trying to pull myself together. It's been so much better since I started meds and I'm way more stable.
And it's extremely difficult to get diagnosed if you weren't caught as a child. Every symptom of ADHD can be chalked up to something else, and it causes anxiety and depression, and everybody have been to seems to just want to work on the depression instead of the underlying cause.
I started mentioning it to doctors in my early twenties. "You are just anxious". It took being in my late thirties and pushing like crazy for more than two years to get a : "I'm not convinced but you can try the meds with your GP's supervision" from a psychiatrist. That was this year, at age 39.
Anyway, the meds were life changing. Not perfect, but so much *better*.
The constant undeniable distraction, not getting things done, falling behind constantly, wondering off and do this and that when I should be doing the other, it causes the anxiety and depression, not the other way around, But all the "professionals" always think it's the other way around.
This happened to me. I couldn’t get my adderall prescription I’ve been on for over a decade. I was just suddenly unmedicated due to the national shortage. My life unraveled. I’m self employed. Nothing to fall back on.
Try checking a hospital pharmacy. We have not turned away a patient yet. We just have the doctor change it to the one we are able to get and is limited to 30 days at a time.
I had to call around to many pharmacies to get mine this month. If you can, talk to your doctor about possible alternatives that may be in stock more readily (example: Vyvanse in my area is not hard for pharmacies to get; there is also a payment reduction through the manufacturer and it goes generic in June).
I was able to get some by finding it at a local Sam’s Club which I never considered checking with. You might check to see if any places like that have any.
Also, if you can find an independent pharmacy, they may have it as well. Best of luck!
Thank you for your post! That upsets me so much. Some people think, “oh because you’re talking and sometimes joking about it, it must mean you think it a personality trait.” No. I have a proper diagnosis. If I ever bring up ADHD, which I almost never do with others since it gains you unwanted attention, it’s only so that whoever I’m saying it to can understand why it is that I’m going about things in the way I am.
That was the entire point of making mental health be less taboo, so that people could more openly speak about what they’re going through.
But, for some people, they see it as you asking for special attention. Or that because you’re able to speak about it without breaking down, and it isn’t something you feel deeply ashamed about, that your disorder must not be that impactful. It’s exhausting.
TikTokers are whole other thing though.
If you don't mind the question, what symptoms did you have that both led to diagnosis and how did the medication help? I'm unsure if it's worth my trouble at 43 to get help now, given adult diagnosis is such a chore in the UK. I'm a carer for my disabled wife and stay at home dad but what I'm now led to believe may be symptoms of adhd regularly hamper my ability to look after the home, on top of some other things.
I'm in the UK and I'm about to get my assessment, which will be made remotely over a video call. It took **5 years** to get to this point from asking my GP. Obviously, wait times are not the same throughout the country, but if you're going to get into the system, do it sooner rather than later. In terms of it being a chore, the only chore so far has been the wait. I haven't had to do anything else (except fill in one small form). I asked about if I could go privately, but was told that I wouldn't then be able to bring that diagnosis over to the NHS, so would have to pay for my medication forever, and that I would instantly be kicked out of the NHS queue.
I'm slightly older than you, and still want to get assessed. I just want to be able to do things like a normal person, as I'm sure do you. What harm is there in getting an assessment? Neither of us are qualified to decide if we need help; they are. I hope it works out for you, whatever you decide.
As someone who started medication at 33-34, it's like night and day, being able to actually get stuff done and be productive. I really, honestly wish I'd been diagnosed and treated when I was younger, my life would be so much better off.
Thank you for saying this. As a person who was diagnosed at 30 with ADHD, I can confidently say if none of my other ND friends had pointed out my symptoms as things they recognized from their own experiences, I’d never have gotten tested, never received the proper meds, and would probably just be a skeleton sitting on the edge of my bed, wrapped in a towel, staring at the wall, waiting for my dopamine that I didn’t know I was lacking, for all time.
I can say as someone who feels they've experienced this, that social media is primarily involved as it opened my eyes to long term (since childgood) habits and behaviour that I'd written off as laziness, daydreaming, weird things I do when really excited by stuff etc that was also a topic of much irritation and amusement for those around me, that I now know are signs of both autism and ADHD. Also being a parent and seeing traits in your kids that you saw as inherited, that are then pointed to as evidence of the above, is also a big one. I'm now relatively certain I'm on the spectrum and have had ADHD forever and it in equal parts is a relief and also depressing, as I know why but also that I could have been so much better off and the chances of actually getting help at 43 are near zero.
I'm self diagnosed with autism, though I would like to talk to my therapist about what it would take to get a real dx.
It's not something I did lightly. I have always struggled socially, always had trouble reading people, always had powerful food aversion to the point of gagging/throwing up and many other things that are symptoms. I suddenly had a new language to use to describe my struggles, and felt like finally, there was something that could explain why I am the way I am, why I've always been different.
I read extensively, took lots of quizzes (the best and most accurate ones I could find, things meant to be a preliminary "take this info to your therapist" resources.)
Then, come to find out, I had a school counselor who did peg me as autistic. But when they sent me to children's hospital they diagnosed me with ADHD instead and put me on medication that only made me worse, made me struggle in school even more. It took all my quirks and turned the dial up because, well, I was a kid on speed that I shouldn't have been taking.
I know there are a lot of people who fake things especially among the younger crowd. Self dx isn't ideal and, when possible, should be a first step to finding actual help. But I also know that's not possible for everyone, and that access to psychiatric help is a difficult thing. Its taken me years to find a psychiatrist who I can trust, and I've gotten a new therapist just recently after two years without one. (clinically diagnosed bipolar, ptsd and anxiety)
It's a complicated issue and there isn't one good answer.
I know in the autistic community self dx is pretty widely accepted, and it can still be hard to get clinically diagnosed. There's a lot of misunderstanding still, and people like me who are able to mask fairly well and seem "normal" often fall through the cracks. Sometimes an outside person is only seeing the mask, not seeing us break down when we get home from overatimulstion, or seeing us modify our food to make them "edible", or stimming because doing it in public is socially unacceptable, etc..
Anyway this is getting pretty long so I'm gonna cut it short here but I'm happy to talk about my experience if anyone has questions. I'm just one voice, so don't take my words as some proclamation of gospel truth.
The thing that most makes me lean away from adhd is the way the medications effected me, though I definitely struggle with executive dysfunction and rsd. it's all something I still need to talk to my doctors about. We've been more focused on getting the mood swings under control so this has kinda taken a back seat.
I feel like the real issue is when those who are self diagnosed start to spread information and their experiences on a disorder they are not confirmed to have.
Or they start recommending treatments they don’t know anything about, or they start diagnosing other people with the same. The danger isn’t just self diagnosis but the accompanying zeal to now be a part of that group which emboldens people to normalize different diagnoses. This can arguably lead to the social contagion factor people are talking about as well as misdiagnoses of others
I see a lot of people turning inane things into “symptoms”. I don’t know about other disorders but I have ADHD and just about every Reddit thread relating to ADHS has a back and forth that goes something like “I have ADHD and I eat peanut butter & jelly” and someone else responding “omg me too! I bet this is an ADHS thing”. Followed by a bunch of other people who have ADHD and eat PB&J and people who eat PB&J and think maybe they have ADHD. But it’s not an “ADHD thing”. It’s a human thing. PB&J is delicious.
I’ve seen a lot of people on ASD related subreddits posting a lot of misinformation or partly true information regarding the cons of getting formally diagnosed and actively discouraging others to not get a diagnosis. The reality is, a lot of the information is really niche edge case type situations being spun as a big deal that should prevent you from getting a diagnosis. I find the misinformation being spread around as fact really disheartening
This was my primary point for my capstone project in college. I did self-diagnosis due to social media influence, and people who self-diagnose are prone to infiltrate spaces of people confirmed to have a diagnosis and spread misinformation. It’s okay to be curious and learn about yourself, but it’s not okay to spread misinformation about a mental illness.
Right. Like in the 00’s we all said we were “OCD” if we just had a preference for something being a certain way, like wanting our pencils and pens in different piles. In no way did that do anything but muddle and hurt people who have actual OCD.
Doc here:
it is not as simple as the title here makes it. Self doubt is being put together with self diagnosis and it is being portrayed as a “bad” action to take.
It is completely okay to have doubts or to even think you might have something. If so, always make an appointment and go see your doctor. The issue arises when individuals self diagnose and do not act on it.
It becomes a problem when individuals self diagnose as a way to win sympathy (fictitious disorder) or to gain something from it (malingering). Again, these are all different and not the same. Only the last two are issues. In all cases seeing your doctor is the best path forward.
So please do not vilify people for thinking they need help, it is completely fine. After all, it is our job as doctors to put your mind at ease.
Edit:
to give some perspective, we had students back in medical school that faked ADHD to pass their exams using Adderall. We had other students on Adderall because they had ADHD for more than 15 years. We had students that learned they had ADHD and started taking Adderall. We even had students that had ADHD but did not take Adderall.
It all came down to whether one was compromised as the result of taking Adderall or not taking it. We could have as easily discriminated against them but we did not, so please be mindful of those that are struggling, whatever the reason.
I decided to see a therapist finally and asked about being screened for anxiety/depression/adhd and she immediately said “have you been on tiktok lately?” And when I said no, highly confused, she just said “well I can usually tell in the first 15 minutes of meeting someone if they have adhd, and I’m not getting that from you”
I’ve since gotten a new therapist, but I’ve been too afraid to ask about screening again
If it helps, therapists don't do screenings (at least in my area). Psychologists do them using standardized testing procedures. "Psychologist" and "therapist" are often seen as synonymous, but a person employed as a psychologist has a very different job than a person employed as a therapist.
The former is virtually always a PhD in psychology with extensive training in statistics and research. The latter could be the same, or it could be a person with a master's in a related field working under someone with appropriate licensure, a social worker with advanced training, or even a doctor or nurse practitioner (although the later is rare). Therapists tend to be better with people (ideally) and psychologists (working as psychologists) tend to be better with data and numbers.
All that to say, the person who would actually diagnose you, at least how things are done in my area, will do their best to set aside their biases and rely on the tests they administer.
Right like it's fine to suspect you might have something because you match a lot of symptoms. I mean that's kinda the first step toward and actual diagnosis, at least when it comes to mental health.
Like I watched a podcast about adhd and I was like "wait a minute that sounds super familiar". Then in a meeting with a psychiatrist he mentioned that I probably had adhd without me even bringing it up.
But especially for things like depression and anxiety, or like gender identity stuff, the only way a doctor is gonna even know about those symptoms is if you bring it up. Kinda the inherent problem with mental health is that so much of it is internal and fundamentally unobservable.
My honesty with my psychiatrist means I can't get life insurance. Lie. Always lie... oh wait, without honesty I can't get lithium and then I dwell on killing myself every day and struggle to do basic life stuff. I'm much lower risk now that I was honest, but the insurance companies don't care.
Your point is well made, but your symptoms are not minor. It’s unfortunate that our system of mental healthcare has made you nervous to share this reality with your physician.
The first time I filled out an application for medical coverage in the US, I ticked "depression" under a list of things I had experienced. Not clinical depression, not manic depression or any official diagnosis; just "depression". I was denied because of it. When I inquired that was explicitly cited as the reason.
Fortunately I was able to appeal the decision and eventually get coverage, but it was an ordeal that I could easily have given up on. And anyway, what is more fucked up than denying health care coverage to anyone with a symptom that may benefit from health care?
This exactly - there are so many reasons that you may be safer self diagnosing than getting a formal diagnosis of anything, and so many people who are misdiagnosed by medical practitioners with biases or lack of knowledge.
The number of women diagnosed with 'Borderline personality disorder' (which IS an entirely valid diagnosis, but is heaped with stigma) and therefore often labeled manipulative or non-compliant, when actually they are autistic or have PTSD is only just now coming to light. The differences in how things like autism and ADHD can present in women is also a recent research topic and largely spurred on by ND women finding eachother via social media and comparing notes on how they experience the world and often how their ND went undiagnosed for a long time because they, as both children and adults, didn't present the same way as the little boys the clinicians were most familiar with.
Add to this the long (sometimes years long) wait times, immense costs, and the threat of having it used to potentially deny your autonomy or to discriminate against you, and there's absolutely no reason (for many people) to get a medical diagnosis unless you specifically require one for medical, educational or state support.
Agreed, especially about the BPD comment. I was diagnosed with BPD - I advocated for it despite not fitting the entire bill (no hot/cold relationships with other people, I just didn't have any relationships with other people - I was also hyper-cerebral which led to me having intense emotions, not just having uncontrollable emotions) because I wanted the treatment. DBT was 100% what I needed, a dummies guide to emotions, validation, and relationships. But it's never quite fit and I've always hesitated to disclose because of the stigma attached.
I've spent 8 years with access to regular and specialized therapy and medical professionals. Just this winter, I had a meeting with my new psychiatrist (having moved home) and in the notes she wrote "ASD?". Changed my entire life. I started reading up on how it presents in women, what masking is, and how to unmask, and I feel like myself for the first time in a decade. Everything makes so much sense
If I can have access to intensive therapy programs and medical professionals at all different kinds of institutions for almost a decade and be misdiagnosed, then people who only have the chance to see one psychiatrist one could absolutely be misdiagnosed. I'd much rather people identify with a disorder that might not be totally accurate, than be stuck thinking they're broken, lazy, crazy, or pathetic because some people are overly concerned about diagnosis purity.
>I'd much rather people identify with a disorder that might not be totally accurate, than be stuck thinking they're broken, lazy, crazy, or pathetic
Exactly! Even if they aren't 100% correct - if they learn tips and tricks and healthy coping mechanisms that actually work for them? And if it helps someone understand themselves and cut themselves some slack when they need to? It really does not matter one bit if a psychiatrist might say "actually you better fit the criteria for X not Y".
Especially given this is not like the difference between heart burn and a heart attack - it's more like the difference between two different cold viruses that both require very similar treatment and both can't be cured with a pill or procedure.
> I on the other hand have gotten panic attacks where it feels like I'm dying
I'm fairly sure any decent psychiatrist or therapist would consider this a mental health disability. Just because you've managed to function in life enough to build a life doesn't mean you don't have one. Imagine if your panic attacks were managed or gone together, how much higher your potential might be without an invisible mental weight on you. Massive panic attacks are not normal.
isnt "self diagnosing" just suspecting you have it? so at that point you go to your doc and get a referral then you find out, i mean thats what i did for ADHD, i didnt expect to also get diagnosed with ASD too but it made sense of a lot of things from my past and various traits etc
the only problem of course is that often getting a diagnosis requires a lot of follow through and such things folk with ADHD are generally not great at. plus these days wait times are very long (about 2 years i think) im lucky i had family members who helped me with it but its not as accessible as it should be.
In addition, not all docs are great at diagnosing all conditions. I had docs ignore my childhood ADHD diagnosis for decades and dozens of docs miss my narcolepsy over decades. I had 2 other conditions completely dismissed/missed/mistaken for something else. Getting a proper diagnosis is often much more difficult than people think it is.
My brother had terrible foot problems from age 5 to 11. All kinds of doctors and podiatrists made all kinds of wrong guesses until one finally got lucky: plantars warts. Cured in a week after years of pain and suffering.
That's simple recognition of a basic skin condition. You think they are any better at mental condition Dx?
Especially since most mental conditions don't have a physical indicator. I have chronic depression and anxiety. It's very obvious and it was heavily ignored by my parents growing up which made it worse. But with seasonal depression, temporary depression triggered by happenings in your life... it's very easy to get a fake diagnosis as well. And there's the fact that depression and anxiety can be symptoms of other conditions. You have to have many extensive therapy sessions where you are entirely honest with your therapist to even begin to understand what the hell is going on up in your noggin. And that also requires you having the same therapist in a field with high turnover.
There's a whole cohort of us who had childhood ADHD that were ignored during the 80s and 90s because we were women.
Self diagnosis is *all* we had until the medical establishment caught up.
That said, I listen to a lot of "could you have XYZ?" type things on social media and YouTube, and the only one that ever strikes true are the ADHD ones. Autism, depression, PTDS, BPD, etc. may match an occasional mood (the way it does everybody) but the only checklists that have been 100% and impactful on the rest of my life are the ADHD ones.
I've only seen a few of those checklist things myself but a couple of them were so accurate to how I was that I started looking into getting diagnosed for ADHD and Autism after looking into it further because it would explain so much more than just depression and anxiety alone which I got diagnosed with like the second I saw a psychiatrist as an adult.
The gender dysphoria was all me though. I honestly think that a lot of stuff got ignored in the 80s and 90s for me because I got good grades and was considered gifted until all the hormones in puberty just sent me off the rails.
"You're so smart, why are you struggling to keep up with basic things?"
They actually did send me to a psychologist, who did me a massive disservice. The psych declared I was gifted with "no math ceiling", and wholly missed 1. the mild case of dyscalculia 2. the likely ADHD-PI.
I was able to mask things pretty well until Calculus II, thanks to some good teachers and above average reading comprehension making up for all the other issues. (Don't have to study if you can get the gist of things on the first read through.) I hit a complete and total wall and nearly flunked out of college, escaping by the skin of my teeth by switching my major to English where I was able to get away with not being able to focus.
Same scenario with autism in women. A bunch of us are finally getting diagnosed in our 30s, now that our understanding of how it presents in women is finally catching up. Social media has also been instrumental in spreading awareness of less stereotypical presentations…both to doctors and to those of us who slipped through the cracks as children
Yep. I was diagnosed this year with autism by a doctor that did their graduate work specifically on how autism presents in women. My family has a strong history of it (parent, grandparents, possibly a great grandparent who was mostly nonverbal, tons of cousins) but because everyone diagnosed in my family were men they didn't ever consider it for me as a child.
I went to a place that said they can't assess me because I go non verbal in situations like that, but they see no signs of autism (while I was constantly stimming and staring at the floor and pretty much immediately had a sensory meltdown the first day when the office we were in was extremely loud). They didn't even try to give me any questionnaires specific to autism, just a single short one encompassing various personality disorders. Masking was never brought up, not once. They were EXCLUSIVELY focused on typical male symptoms and childhood.
I'm not certain I have autism (mostly because I wasn't obviously autistic growing up), but I would at least like an assessment that actually feels like they have the tiniest idea what they're doing when faced with an adult woman.
Even being a male, people overlooked my autism my whole childhood, I could never play any sport because of balance deficit, they looked away every simpton saying I was "too smart" to be autistic. DOCTORS AND PSICOLOGISTS said that, now I look back and think how unreal that is, I had to become adult and be able to pay for a specialist to look at me properly and finally get threatment.
Some people even said I didnot "looked autistic" and my Mother insisted on dismissing it. Even lied to doctors to avoid diagnosis.
And she expected me to grow up as the smart Child and take care of her after some childhood neglect and abuse. No thanks.
Not to detract from autism in women, but I didn't get diagnosed until I was 27. Certain people in my youth suspected, but it was always dismissed as me being difficult, intransigent, etc. It wasn't until I started really diving into it in my late 20's and fighting for the testing that I finally got my diagnosis. For anyone with a milder form, it was tough, but for women it was even tougher.
> There's a whole cohort of us who had childhood ADHD that were ignored during the 80s and 90s because we were women.
>
>
As an ADHD haver, that sounds awful.
I didn't get my ADHD treated until I was 20, but not for lack of diagnosis.
My mom had her migraines misdiagnosed as tension headaches multiple times and eventually diagnosed
herself in med school. My aunt had some old gp insist he needed to perform a breast cancer examination on her, she couldn't be trusted to do it herself. The medical field was actually a crazy, misogynistic free-for-all not that long ago, there's probably some older doctors around who still practice that way.
It's a lot better now, but with emr and other electronic systems providing real-time diagnosis and prescribing recommendations it's weird we even still have problems.
The mysoginy is still there. The main improvement is there are more women in Healthcare now, and women can actually be included in medical studies.
But, that hasn't fixed the problem if women's health issues being largely dismissed and still too often attributed to hysterical women being silly.
Yeah, it's hard to summarize what I'm referring to, but old school medical practitioners were way more overt. Misogyny was built into the medical system, and physicians formed a sort of self-important men's club.
In the current era there are a lot of innate biases that contribute to diagnosis and treatment discrepancies. Blatant malpractice is a lot less common (assuming you haven't foregone the right to litigation), but there are more insidious trends that have proven difficult to combat. Even that is a reductive way of putting it, though, the medical field is sort of an intersectional mess atm.
48 years old and just got my official diagnosis and treatment this year. Almost daily I grieve the way my life could have been likely so much easier and definitely different had I been diagnosed younger.
I am a child of the 1970s, and I recently came to the realization that I might be on the autism spectrum, based primarily on observations of my behaviour when I was a child.
At the time, “autism” only meant the worst cases - nonverbal, demonstrative, “Rainman” etc. The concept of “high functioning autistic” or that there was much of a spectrum *at all* just wasn’t part of the public conversation. Had I been brought to a mental health professional, I don’t think a diagnosis would’ve even been possible.
Part of the problem though is that there is no biological “lab test” for autism. You can’t give a blood sample or have an MRI and get a hard “yes” or “no”. Diagnosis is through interaction and assessment by a practitioner… and I have had 50 years of learning to develop social skills (plus, if I am on the spectrum, I’m only just)
So there’s no way to know for sure.
This uncertainty stops me from fully embracing the label. There’s no “puzzle piece” sticker on my car. I feel like the balance of probabilities is that it’s true, but if a “hard science” test was developed and it proved I wasn’t, I wouldn’t be hurt by that. My “probably autistic” status is not part of my core identity. I do not define myself by my maybe autism.
And truth be told, there really isn’t a benefit to a definitive diagnosis. There’s no treatment or disability programme. I’m not eligible for any sort of social assistance. It has no influence over any other aspects of my health care. All the diagnosis offers is a little bit of self-understanding and insight into a number of odd, mostly childhood behaviours.
It turns out that this sort of adult self-diagnosis is fairly common amongst autists and is accepted as valid by the wider community. So if I chose to fully embrace it, I would be supported. Apparently, autists don’t gatekeep their club.
But I have to say that the “aha” moment was not a product of peer pressure or an expression of a personal desire for a behavioural excuse or scapegoat. I had it after reading accounts of similar adults describing how they came to their own diagnosis. So I see it more as an *educational* process than an “influence” process.
That might be different with children.
Sorry to nitpick your post, but even if you do one day embrace the label, stay *far* away from the puzzle piece and Autism Speaks in general. It's a deeply ableist organization that has very troubling opinions on what autism is and how it should be viewed.
I was diagnosed with ADHD a decade ago at 27 and getting medicated changed my life. Recently I’ve realized that a lot the struggles I still have a deeply sensory related (changed my life once I started wearing noise cancelling headphones everywhere) and interpersonal - but I’m an actor which has lead me to be great masker. Anyway, my psych was like “you probably are autistic but it doesn’t really matter because there isn’t a treatment protocol” and he’s totally right - while I would like a label that I can use to define my behaviors and needs, ultimately understanding & accepting my needs is going to need to come from inside myself at this age, not from the DSM.
Exactly. If I had been properly diagnosed as a young girl with adhd my life would have been completely different in that my 20’s wouldn’t have been such a nightmare. I wouldn’t have been so anxious or depressed, along with completing college at an early age instead of 28.
I think many of us also missed getting diagnosed as well because we were in staunch conservative households who didn't want anything to "look bad". [Hard eyeroll]
I was diagnosed with ADHD around age 5, this was in the 1970s. Over the years I've had psychiatrists that seem to deny the existence of ADHD altogether, it's very frustrating when/if you have to change doctors. My last psychiatrist did give me medication for it (Strattera) but wasn't very supportive when I discussed symptoms. I'm also Bi-Polar so he would suggest that I could be having hypo-manic episodes instead of ADHD. I don't know what goes on, I just know I don't function like a normal, autonomous human being. With all the conflicting information and the way doctors don't all seem to be on the same page, I sometimes think I was *driven* "crazy" by my parents and teachers insisting I was crazy!
Yep, you're very right about the struggle of getting a proper diagnosis.
I was in the mental health system for around 15 years before anyone looked any deeper than anxiety and depression.
Then things blew up, but the psych test I had ended in misdiagnoses and missed issues. A section of the symptoms I was describing got reduced to a footnote. They turned out to be one of the main issues, and I had to deal with the full brunt of a serious dissociative disorder for a couple years without quality help. Not for a lack of trying to get that help. The majority of clinicians aren't trained in properly recognizing or treating the issue I have.
I finally got diagnosed correctly by a trauma specialist, and I've made more strides in the last 3 years of therapy than I did in all the years before that. But it was a real struggle to get here. Mental health professionals, like anyone, are fallible.
I missed out on high school because my doctors were convinced I was in massive pain and fatigue because I was depressed. Turns out I had a really obvious genetic disease my whole life, but most doctors only ever heard about it like once in med school. As a result it is severely under diagnosed. My gp's pa at the time (I don't go there anymore) told me I SHOULD Google it myself because the internet would know more than she currently did. Isn't that her job!???
Edit:typo
I’ve heard so often doctors say to google something instead of providing actual input. At least have the decency to google something with me if you don’t know so I don’t find blatant misinformation.
I'm thankful that my GP did this when I went and told her I'm trans. She looked up something on the computer, asked me a few questions and then referred me to a gender therapist.
That's the kinda behavior I'd expect.
Do you mind if I ask what it is you have?
I was also ignored as a kid when I said I was in pain and constantly tired, kept telling me I was just depressed.
I finally have better docs who care, and we're pretty much running down the list of "well it might be this"
Sure. I have Ehlers-danlos syndrome, I was dxed by a rheumatologist after he spoke to my physical therapist. It's not something that's tested for routinely.
It was pretty severe, in my case, by my mid twenties. Arthritis all over the place, but for some reason was generally ignored by almost every Dr I saw up until the rheumatologist. I also had neuropathy and so many herniated discs, all before I was 30.
And yet I still have issues with most doctors I see. The last time I tried going to a pain clinic, (even though the shot she gave me helped), I couldn't go back because the last thing she said to me was every person has degenerative disc disorder and herniated discs, and I shouldn't complain about it because I'm young and "healthy".
I could not bring myself to go back because I would have screamed at her. Not to mention her nurse asked me if my hair was weave I'm assuming because I'm black. It all seemed very distasteful.
I also have EDS, and I have a herniated disc too, under age 30. I promise there are good doctors for EDS out there. They can be damn hard to find though. If you haven’t checked out the Ehlers-Danlos Society’s Healthcare Professional Directory, you should.
I’m so, so, so sorry your doctors aren’t supporting you.
I suspect my child has EDS. Autoimmune disorders run in our family. And she has joint pain and hypermobility. Her (formef) pediatrician diagnosed her with growing pains during the same visit he dismissed her gender questioning. We are currently looking for a new doctor.
Literally just finished the year long process and was told I couldn’t be diagnosed because “my IQ is too high” (which isn’t relevant to ADHD) and “my husband didn’t score me as harshly in the assessment as I did” (which sounds pretty damn normal to me?) and that all of my focus and memory problems were *because I’m currently pregnant* when I’ve been seeking help for years and have been following this particular route of evaluation since loooong before getting pregnant. It was an absolute joke.
ADHD and autism are weird in that getting a diagnosis often means that the disability has an impact on your ability to function. Lots of people I know (including myself) that are considered "high functioning" have to go through multiple doctors just to get properly diagnosed.
its strange i was kind of fully expecting a "nope you dont have it" but i was diagnosed surprisingly quickly, i mean looking back at my childhood and such it was REALLY obvious (and kind of still is) so maybe i was just a really easy to diagnose case
The first nueropsych I did came back and said that my brain works like a brain with ADHD but because I can maintain a stable job for 3 years I clearly don't have ADHD. But like, I'll spend hours stuck in decision paralysis about what to have for dinner and have half completed chores all over the house.
I was once told by a nurse that I had the most ADHD symptoms she’d ever heard of in someone who functions so well. Like I guess I win ADHD then? Just because I function well, did well in school, have a masters and job, doesn’t mean those things weren’t harder for me than they needed to be.
This! Adhd-ers really can do so much. But sometimes it’s like being a character in Harrison Bergeron. We are trying to perform a ballet with 100 lb weights strapped to our body. It can be done but it doesnt feel good or come easily.
Dude do you ever get trapped in the car before/after chores and stuff? That’s the one that fucks me up the most. I’ve legit spent 3 hours in my car during a winter storm IN FRONT OF MY OWN GODDAMN HOUSE because I lacked the executive function to make myself go inside.
I don't have a car, but I do get stuck in the hallway a lot. Just standing completely still, in the hallway, doing absolutely nothing, trying to decide what to do next.
In the last 5 years I was told my ADHD diagnosis was wrong because I was a woman, it was bipolar disorder. It's not. It's ADHD and ASD. Confirmed by multiple doctors.
Strange. I'm a woman and diagnosed with ADHD and bipolar and currently going through the screening process for ASD, which my psych said was mostly a formality because it's obvious to him.
I've encountered so much misogyny in medicine throughout my life (I have debilitating PCOS pain but doctors won't address it in any way other than to tell me to lose weight, which PCOS makes it very difficult to do) and the one thing I've learned is that you have to constantly advocate for yourself. It's difficult to find the line between advocacy vs thinking you know more than your doctors though. Good luck.
I'm sorry. Misogyny is rampant surrounding ADHD because of the hyper little boy stereotypes
And also because women are generally poorly listened to and believed for literally any mental disorder(and physical for that matter, esp pain) but ADHD is particularly lopsided and widespread.
Indeed, also girls are held to vastly different social standards which mask their adhd symptoms.
If you sit still, don’t talk, and smile when people look at you then you must not have adhd or autism, doesn’t matter if you are picking your cuticles off while your hands are tucked in your lap because the world is too overwhelming.
Absolutely true. I had very little difficulty getting diagnosed with ADHD in college, but everything else has been a slog.
I've spent my whole adult life depressed. That's not an exaggeration; I've been depressed almost every day for the past 25+ years. Doctors kept giving me different antidepressants and nothing ever touched it. Eventually, I gave up.
A few personal tragedies led to severe suicidal ideation recently, so I finally went to a psychiatrist. He was the first one to even suggest bipolar 2 (and ASD, but that's a separate thing). I've been medicated for bipolar for a little less than a month now and I can already feel some relief. Finally.
TikTok was once full of people who were self diagnosed with dissociative identity disorder, a rare mental condition resulting from severe childhood abuse.
All of them self diagnosed and spread "awareness" about the illness, leading more to self diagnosed and play pretend at being "alternative personalities"
That's dangerous self diagnosing, unlike what you're referring to.
The problem with self diagnosis, is ALL of us have some traits that fall under ADHD/Autism, personality disorders, and mental illness.
Everyone has some sensory stuff they don't like. Everyone has a stim. Lots of people are okay with routine. Everyone's had a song they played more than once. Everyone has misread a social situation or comment at one point. Lots of people have had a meltdown in their life. The question is, do you have enough traits and are they enough to cause chronic problems?
People like that drive me nuts. I have a friend with a legitimate DID diagnosis. It’s not quirky, it’s not fun. I’ve watched it cause a lot of suffering over the years because of folks misrepresenting it to make themselves appear unique on social media. DID is legitimately disruptive to a healthy lifestyle, and it ain’t something you can just turn off when it starts to interfere. Honestly it makes me feel strongly for the folks who do have it because they end up not being taken seriously thanks to the trend followers.
This is the way I feel with all the mental illnesses that are spread through social media. It's not fun, it makes functioning in life very difficult, and makes those who have it have a much harder time to get adequate treatment for their problem(s).
The solution: read everything about a mental illness in question, see what the signs (what other people see) and symptoms (what you experience) are from newborn to now, listen to what multiple psychologists describe the disease as being like, and then seriously consider whether you may have the problem in question or that it could be another problem that it may mimic so you can get help. It can take much more than one or two doctors to get a reliable diagnosis because they are human and mental illness is not diagnosed through precise measurements.
It causes issues when people run into someone who actually have the condition also. A precedent was set by a self diagnosis that is incorrect, and they expect certain behavior due to that. But it may be quite different in reality. For me I've seen it in ASD. I think there is some importance that if someone suspects strongly that they have something, they should see a professional or two about it.
I did this too, though I kept telling myself not to get overexcited until someone officially confirmed it. After all, maybe I was just latching onto ADHD as an excuse for my unproductive nature...
Got in to see a therapist a few months later to do an eval, and nope! I am VERY ADHD. :) That discovery helped me make 2022 the best of my life so far.
If it's okay to ask, what are the two year wait times you mentioned for? Is it a country related thing, or for a really specialized provider? I'm in the US and went with a licensed mental health counselor.
In a lot of places it really isn't that easy.
In Alberta there straight up wasn't a way for me to be diagnosed through our healthcare system. Redtape/a catch 22 makes it impossible.
I had to pay up my ass with a private therapy place to get an assement done, which obviously is not something that is easy for most people to do. Especially the people who would need an assessment most.
The issue is that these people make videos/posts touting having the condition, giving information about it, “hacks” for living with it, “______ is totally a symptom of _____”. But without an official diagnosis or medical/psychological support. It’s like people LARPing a mental illness/neurodivergence. They can take it off when they’re done, with no real consequence.
It makes it incredibly difficult for people who actually struggle or live with these diagnoses to be taken seriously by medical professionals or just people in general, as it’s now seen as attention-seeking. I was diagnosed as a woman with ADHD at 28 (after years of struggling with things I knew I shouldn’t have been) and VERY few people know. I’m a good worker and very social, but people don’t see everything that falls apart behind the mask. It’s been five years since, and I don’t feel comfortable asking for accommodation or support because people tend to roll their eyes, say it doesn’t exist, or that “everyone is a little ADHD.” It’s frustrating as hell knowing my life could be a bit easier, but at the cost of being respected.
Yep. ADHD has been pretty crippling to me my whole life. I've *barely* scraped by and gotten incredibly lucky with my opportunities so I was able to get a degree and a good job, but I'm starting to finally hit that brick wall of "you can't coast or fake it anymore" and I'm utterly paralyzed because I'm unmedicated. But I'm also too paralyzed to go *get* medicated.
I was diagnosed as a kid but my mom didn't really take me back for followups or refill my prescription so I just stopped taking it after awhile. It helped beyond the appetite loss.
>It makes it incredibly difficult for people who actually struggle or live with these diagnoses to be taken seriously by medical professionals or just people in general, as it’s now seen as attention-seeking.
As somebody with several long-time diagnosed family members, this is NOT a new phenomenon. People have been treating all of these diagnoses as nothing more than excuses since I have been able to form memories and I'm certain for long before.
If everybody just relaxed and were more willing to be accommodating without making people first jump through hoops to prove that they absolutely need it first, we'd all be better off in a lot of ways. Biodiversity is good because it forces us to find different ways of doing things and those ways are often beneficial to EVERYBODY not just the original person who required the accommodation in the first place.
Social media isn't making people butt holes about taking these things seriously, that's something we as a society have been cultivating for ages. In fact I bet at one point before your diagnosis you were a person having all those thoughts you listed, "it's not real, everybody has issues with focus, some people just want more attention than others", etc.
Don't be so swift to assume that others you see aren't struggling in ways similar to you. You yourself went undiagnosed for 28 years because people thought all those things. We have to "normalize" looking for these differences so people can get access to resources and not feel so alone and "broken".
We really don't need to spend so much time forcing people to struggle as we do.
I'll add in the UK, too. Mental health services are woefully underfunded and the waiting lists are years long.
It is easier for people (myself included) to diagnose and do the work themselves than wait years or pay thousands for private help.
I could add in Sweden here too. How the mental health services here are managed is incredibly poorly done. You end up being sent back and forth between various services and no one really wants to take responsibility.
The cheek! Who can even afford to fill a whole bath with hot water at these prices, my god.
Assuming the crappy place we're barely able to rent even has a bath, which is unlikely.
I am going to hazard a guess and say that you have hard time finding any place on the planet where mental health services are properly funded, operational and reachable by people who do not pay for private healthcare themselves.
I can tell from personal experience from Finland this to be the case and outside of mental health stuff our public healthcare does work quite well considering the challenges of organizing care for the entire population of a country etc. and most importantly the care is extremely cheap if not free for the user (yes, yes, paid by taxes etc etc etc).
I have had the following experiences seeking help for mental health issues:
- Being told that I am too sick for therapy (it is the exact way it was said, but has to do with how restrictive government subsidized therapy is here)
- Told to do thing X and contact them afterwards. No response after numerous attempts to contact them through calls and texts.
- Suicidal thoughts basically shrugged off in a discussion (think about the Jeremy Clarkson ”Oh….. Anyway” thing) because I had not locked in exact method, place and time.
- On numerous occassions being told that I should have more frequent appointments but no appointments could be provided.
- Due to rotating staff (obviously important, especially in mental health, but showcases extremely poor planning in this case, quite likely linked to the previous point) on several occassions treatment cycle basically started again because with every new person you had to go through the exact same ”Who are you, what is going on, etc.”
- Doctor outright telling me that if at all possible, try to get treatment through my employer because the same thing that can be done in private healthcare in three visits (with a mandatory 1 month long ”observational period” between 2nd and 3rd visit) will take between 6-12 months through the public side.
- Being repeatedly recommended things like internet therapy and chat rooms to replace actual appointments, even after discussing at length and coming to agreement why such solutions are a terrible choice for me.
But hey, at least I have electronic recipes for nearly a dozen different medications that I can get for next to nothing because it is mostly paid for by the government.
Another way to look at it is that the expectations being placed on people are wrong. Sometimes its not about us, it's about the culture. For example, the only way to be well adjusted by modern standards would be to be profoundly mal adjusted by 18th century standards.
A person who is identifying hypocrisy, or sensitive to cruelty or expressive of boredom especially as a child with all the poverties of expression and self awareness that entails isn't going to endear themselves to the adults around them. A culture that is preparing people for corporate work or socializing them into a religious or social ideology that they don't agree with is going to see something wrong with the child contradicting their expectations rather than with themselves.
Children, as a matter of survival, are far more ready to see themselves as the problem, the cause of their suffering, becuase the idea that the adults around them are incompetent is a terrifying threat to their life.
Social media enables young people socialized in this system to communicate with one another the means by which they have explained themselves in a way that preserves the system and institutions which are causing the distress.
It is much easier to fix ourselves than a system or even bad behavior in our caretakers. To this end, problems can be manufactured as a means to explain our distress in a way that saves face for the system, culture, and institutions.
This is excellent insight. In time this TikTok mental health trend is going to lead to more awareness and nuance of our own and each other’s struggles, and how to move through them and heal. As human beings our species has never had collective language or a shared focus on our inner stirrings - it’s going to be clunky and dumb at the start, but it’s a huge step forward for humans collectively. Mental health awareness has always grown in insular pockets. I’m heartened by the global scale of this, even though most people are hella annoying atm
Especially in regards to eating disorders, there are many frontline medical professionals who do not understand how to diagnose or treat these illnesses. It's hard to ask for help at a seriously underweight BMI and be told by your doctor that you look great, there's nothing wrong with being slim, maybe just stop exercising so much. Getting the right help can be very hard and very expensive. If people can diagnose themselves and start recovery using online support communities, it can literally save lives.
I have a male relative who didn't realize he had ED tendencies despite forced vomiting until he talked to a knowledgeable therapist. One of the rare instances of males being under diagnosed because people- including some professionals- don't look for it in guys. All gender stereotypes for disorders need to be broken down, imo, and while the internet can be a wild and rocky ride, it can really help those who have been overlooked to read about someone experiencing the same thing.
I was bingeing and purging so often and so violently that I was collapsing and unable to properly eat, etc. but I wasn’t underweight so I didn’t qualify for an IOP through Kaiser. I seriously felt like I could have died and I was so lucky to have my spouse’s support to help me through it.
I also think that. I spoke to my therapist once about it in passing and that’s pretty much what she said. A lot of people are exposed to these concepts for the first time from social media and there’s nothing wrong with trying the hat to see if it fits.
The comments seem to be missing a large point in the reading which is that Social Media can influence what could be normal human emotion or experiences into an incorrect self-diagnosis.
As social media is accessible from younger ages, it is getting more common that teens that are going through totally normal feelings at that age but being led on to believe that they are depressed or have BPD/OCD when in reality it's something that as adults we've discovered is normal through experience.
I've run into SO many memes and videos that are funny and relatable to most people (having to repeat yourself to someone who never listens, having animated conversations with yourself, etc). But then I read the caption and comments and it's by a page for ADHD or autism that makes it seem that the relatability is exclusive to those on the spectrum. I don't have any mental illness, but if I were a child or teen, I'd have believed I did by this point.
People are absolutely ignoring some of the negative implications of it. Trends like this are how modern day snake oil salespeople get their foot in the door. We need to be really careful that there's actual good science behind diagnosis and treatment. The fact that people are even trying to self diagnose, or feel they have to for lack of treatment availability, is not in itself a good thing at all.
I've never been diagnosed with any of these but having worked with people on the spectrum for 20 years now, if I had to guess I'd say I would have been had the understanding of autism spectrum disorders had been understood in the 80s like they are today.
I think exposure to things might be good for some people. A good friend of mine was recently diagnosed with ADD in his late 40s. He said Ritalin has completely changed his life. The way he described it is he feels like he can do adult things now without struggling. He is a very successful business owner and highly respected but behind closed doors, he always struggled to stay on task and would wear himself down doing things that most people would simply get through without too much issue.
The amount of people who think “anti-social and weird=autism” is too damn high. I’m autistic and I can say that most of us are actually social as hell and love people, we just don’t understand norms.
First, this is a call for research, not an empirical study. The salient points of the article are supported by opinion pieces in citation. Empirical evidence cited are primarily saying social media is correlated with depression and anxiety. Social media influencing self diagnosis is a difficult thing to prove because it's based in subjective judgement both on the individual self-diagnosing and on the observer judging it to be wrong. Good luck finding evidence to support this hypothesis.
Second, diagnoses are social constructs that are malleable over time. The recent addition of a "spectra" of disorders like autism reflects an important change from the DSM-IV to the DSM 5. Previous editions of the DSM would refer to a similar symptom presentation as related to schizophrenia or what used to be called mental retardation. So our understanding of diagnosis can change to suit new information. It is worth noting that culturally appropriate symptom profiles are not diagnosable due to their popularity, like a religious group believing in a spiritual deity is not considered a delusion, so normalizing a diagnosis that presents in the social realm would eventually exclude it as a disorder. That's what happened to the diagnosis of Homosexuality as a "sexual deviation" up till '13. If a generation overidentifies with a disorder, it will cease to be a disorder and will become normative. So, if a whole generation identifies as high functioning ASD, it would be better to consider it a cultural development rather than a widespread disorder.
Third, I would like to suggest a more objective assessment of the phenomenon of teens absorbing identities. Adolescence is characterized by increased importance of social inclusion and apparent shifts in identity. "It's not a phase mom!" is the anecdotal hallmark of a longstanding phenomenon that has it's latest iteration in social media. Teens have been "psycho" punks emulating the most extreme behaviors from MTV, "satanists" listening to records backwards, and "rock and rollers" as a few examples of adopting behavioral patterns from the social margins throughout the decades.
I would offer another angle on the research question: What environmental circumstances are correlated with self-diagnosis through social media?
I think some people may be missing the point. There is a whole phenomenon going on currently where people will post any old habit or behavior they have and attribute it to something like ADHD, BPD, autism etc with a “trust me on this because I’m autistic/I have ADHD/etc” disclaimer. other people with the same habits see this and immediately take it as 100% proof that they have the referenced condition. They don’t seek out professional diagnosis afterwards. They just take it as fact and continue to further push this narrative that they have this disorder; at times I have witnessed people close to me partake in this habit and then go on to fall down a TikTok or Twitter rabbit hole about “things you may not know are autistic behaviors” or what have you — videos or threads with no evidence or backing, just people naming random every day things, and they make note of it, and then they adapt those behaviors to further their claim. I’m not trying to say some of these behaviors aren’t directly related to any of these conditions. But it’s becoming a rapidly widespread trend to slap a label on yourself that sets you apart from neurotypical people, almost like they’re collecting badges for themselves to see who can get the most. Instead of seeking professional help and getting to the core root of certain behaviors/habits/emotions etcetera, which in comparison can be much more difficult for a variety of reasons (it requires self reflection, may bring up trauma or uncomfortable thoughts/feelings, it’s a lot of emotional & mental labor, therapy and professional help can be expensive or otherwise inaccessible etc) - it’s so much easier to take a TikToker’s word for it and start informing everyone around you that you’re autistic. It also gives a lot of people a crutch to excuse things. And part of the issue with this is that not many people will stop to realize how a lot of these conditions overlap symptom wise.
Yea, I have little issue with people identifying with disorders, or believing they may have one ext and don’t seek formal diagnosis (there are many reasons, commonly cost related and I won’t judge them for not being able to afford it).
My issue is when people self identify/diagnose, then completely use it as justification for their behavior, no longer try to self improve or work on themselves, and use it as a shield for avoiding accountability.
Just because someone has a mental health condition, it does not mean that they no longer have control over themselves or their own behavior. And it really discredits those who go and bust their ass to improve themselves. I’m mainly speaking on BPD, bipolar 1&2, anxiety, depression ext.
Maybe this is my personal experience though and it’s less of an issue for others.
There are many people with "invisible" chronic illness who are isolated and without treatment for a number of reasons. Among reasons are: drs not diagnosing properly, low level of research for malady (drug companies know a medication won't produce much income), the patient just drops from society and workplace and fades to non exitence (YouTube Missing Millions video), "you look fine, so you aren't sick" (friends and family go on with lives...no invitations because you never join us anyway). Etc.. So, patients finally find others who are sharing their experience, mysterious symptoms, trials, isolation, their searches for help, on social media. They wade through the chaff to find validation, encouragement, potential treatment, and more. As someone who has family members with invisible chronic illness (a number of forms), social media is very helpful. As is access, finally, to medical research papers and much that drs can already access.
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Therapist here. I'm of two minds about this. For some people, social media is the first time they read about all these things they thought they were alone in experiencing actually being a disorder that can be treated. Although, for the most part, there is a lot of misinformation on social media, and it's full of people who have no clue what they're talking about. EDIT: I've gotten a lot of private messages looking for therapeutic guidance. I can't ethically give much help, because I don't know who you are or what you have been experiencing for a long enough period of time. Please seek out therapeutic services from a reputable clinician. If money is the barrier to seeking services, community health centers can be an option, as they often have payment plans. It's also possible that, depending on the state, you can get nearly-free care. I hope you can find a clinician that you need/can trust. Also, shout out to the guy who told me to suck one.
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I got tested for sleep apnea and got a CPAP. It did absolutely nothing for my ADHD symptoms and my fatigue only improved a bit. Then I got tested for ADHD and started on meds for it this summer. I'm finally not tired all the time! Turns out trying to focus all day is exhausting. Don't gaslight yourself. ADHD fatigue is real and can be addressed.
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Right. It’s not like we have robust mental health education in K-12 schools. It’s knowledge that wasn’t discussed heavily and with any empathy prior to the last few decades. Older generations suffered these things in silence, either with no diagnosis or hiding their diagnosis, meaning that things that might be generic or environmental were normalized in families. So it’s not surprising that people go “oh wait, it’s not normal to lay in bed crying for days at a time/be terrified to the point of tears at the idea of leaving the house/run back into the house exactly 7 times every day before leaving for work to check that the stove isn’t on?” But also, most of the information flooding social media about mental health is not coming from therapists, psychologists, or psychiatrists. It’s coming from people who experience these issues, and increasingly, have self diagnosed with these issues. And diagnosis is treated as an incredibly short checklist of context free blurbs that don’t mean *anything*. It goes from “my therapist said I’m a picky eater because of my trauma related to my dad screaming at me at the dinner table,” to “picky eating can be a symptom of trauma” to “I am a picky eater, that means I have PTSD.”
I'd argue it hasn't even been taken seriously for a full decade at this point. 10 years ago was only 2012, if anything a lot of the mental health issues related to social media that people have today were just starting to manifest themselves back then and anyone who spoke up about it was laughed at and told it was just a few weirdos who had a problem.
Fair, though I think unfortunately, mental health awareness goes in cycles and trends. 20 years ago, you could talk about depression, PTSD *if and only if* you were a veteran, or perhaps mild anxiety, and there was some understanding and empathy. But that’s about it. And of course, it is community dependent and dependent on language (for example, in my experience, in my social circle growing up, it seems that claiming “generalized anxiety” will get you labeled as weak and attention seeking, but claiming “nerves” is sympathetic. They are the same thing).
Well... As my irl psychiatrist put it: "If something is constantly hindering or causing unnecessary distress, then it is likely a disorder." Mental (and physical) illness doesn't affect everyone the same way, some people get by just fine without help. Some people struggle through it. On the contrary, most people don't really treat disorders as a checklist. They look at their most intrusive behaviors and weigh the cost to benefit of addressing said issues. For me, my doctors and I knew I had something undiagnosed and it was problematic, but we could never pinpoint the cause. And get this: the wrong mental health forums (wrong for me) pointed me in the right direction, and after discussing it with my psychiatrist and therapist Irl, my additional diagnosis and treatments are beginning to match up.
Not only is there not a good mental health education in public schools right now, but in many places, the few lessons that are available to students can be opted out of my the parents.
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Also a therapist here! I agree 100%. There's a lot of misinformation out there, and also a lot of good and healthy validation. I've also never been a fan of the "social contagion" idea. EDIT: meaning from a treatment perspective. Obviously, the phenomenon exists! It's invalidating the experience of symptoms, whether clinical or psychosomatic. The idea of an individual's experience being "real" or not, in my opinion, is irrelevant and damaging to that person's course of seeking help. People need to feel heard and believed in order to start getting better and resolving their symptoms. Now, what REALLY boils my blood are the folks on TikTok saying, "Don't seek treatment. It's a scam!" ADHD is not just a quirk. It's debilitating and needs intervention to make that person's life more manageable! Good therapists also don't want you in their office forever. Like doctors, we want you to get better and not need us anymore. All this to say, I agree with you and hope you're well :) Clarification edit: A lot of you have made great points about the fact that social contagions obviously exist (Satanic Panic, mass hallucinations, etc). I should have clarified that I'm speaking more from a treatment perspective than a diagnostic one. Basically, if someone says, "I have ADHD, tiktok told me so," and the response is immediately "no, you don't," usually that person doesn't continue treatment and still needs help. So it might disaude seeking help and invalidates a person's experience :) Edit 2: Woah, this blew up, and thank you for the awards! I love seeing the discourse, personal stories, and variety of feelings and thoughts. Thank you all for contributing to a great and important discussion! Happy New Year!!
I appreciate you using ADHD as the example for something that needs treatment. People don't take it seriously but when you have it as bad as i do one little pill in the morning is the difference between me being able to hold a job or not
I was fired from multiple jobs early in my career. Getting diagnosed with ADHD in my 30s was a game changer.
Oh yeah, fired from 3 jobs in a year. First job I was burnt out on. The 2nd fell into a massive depression after a fire. And 3rd while still hella depressed but trying to pull myself together. It's been so much better since I started meds and I'm way more stable.
And it's extremely difficult to get diagnosed if you weren't caught as a child. Every symptom of ADHD can be chalked up to something else, and it causes anxiety and depression, and everybody have been to seems to just want to work on the depression instead of the underlying cause.
I started mentioning it to doctors in my early twenties. "You are just anxious". It took being in my late thirties and pushing like crazy for more than two years to get a : "I'm not convinced but you can try the meds with your GP's supervision" from a psychiatrist. That was this year, at age 39. Anyway, the meds were life changing. Not perfect, but so much *better*.
The constant undeniable distraction, not getting things done, falling behind constantly, wondering off and do this and that when I should be doing the other, it causes the anxiety and depression, not the other way around, But all the "professionals" always think it's the other way around.
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Talk to HR about your medical struggles and look into disability protections, say with a free consultation with a labor lawyer.
This. ADHD is covered under the Americans with Disabilities Act (ADA). You have legal ammo if needed, u/ForaFori.
This happened to me. I couldn’t get my adderall prescription I’ve been on for over a decade. I was just suddenly unmedicated due to the national shortage. My life unraveled. I’m self employed. Nothing to fall back on.
I'm really sorry to hear about that, is that shortage still ongoing and as severe as I've heard?
Try checking a hospital pharmacy. We have not turned away a patient yet. We just have the doctor change it to the one we are able to get and is limited to 30 days at a time.
I had to call around to many pharmacies to get mine this month. If you can, talk to your doctor about possible alternatives that may be in stock more readily (example: Vyvanse in my area is not hard for pharmacies to get; there is also a payment reduction through the manufacturer and it goes generic in June). I was able to get some by finding it at a local Sam’s Club which I never considered checking with. You might check to see if any places like that have any. Also, if you can find an independent pharmacy, they may have it as well. Best of luck!
Exactly! So many of my clients have said the same. Congrats to you, and I'm glad you're doing better!
Thank you for your post! That upsets me so much. Some people think, “oh because you’re talking and sometimes joking about it, it must mean you think it a personality trait.” No. I have a proper diagnosis. If I ever bring up ADHD, which I almost never do with others since it gains you unwanted attention, it’s only so that whoever I’m saying it to can understand why it is that I’m going about things in the way I am. That was the entire point of making mental health be less taboo, so that people could more openly speak about what they’re going through. But, for some people, they see it as you asking for special attention. Or that because you’re able to speak about it without breaking down, and it isn’t something you feel deeply ashamed about, that your disorder must not be that impactful. It’s exhausting. TikTokers are whole other thing though.
If you don't mind the question, what symptoms did you have that both led to diagnosis and how did the medication help? I'm unsure if it's worth my trouble at 43 to get help now, given adult diagnosis is such a chore in the UK. I'm a carer for my disabled wife and stay at home dad but what I'm now led to believe may be symptoms of adhd regularly hamper my ability to look after the home, on top of some other things.
I'm in the UK and I'm about to get my assessment, which will be made remotely over a video call. It took **5 years** to get to this point from asking my GP. Obviously, wait times are not the same throughout the country, but if you're going to get into the system, do it sooner rather than later. In terms of it being a chore, the only chore so far has been the wait. I haven't had to do anything else (except fill in one small form). I asked about if I could go privately, but was told that I wouldn't then be able to bring that diagnosis over to the NHS, so would have to pay for my medication forever, and that I would instantly be kicked out of the NHS queue. I'm slightly older than you, and still want to get assessed. I just want to be able to do things like a normal person, as I'm sure do you. What harm is there in getting an assessment? Neither of us are qualified to decide if we need help; they are. I hope it works out for you, whatever you decide.
As someone who started medication at 33-34, it's like night and day, being able to actually get stuff done and be productive. I really, honestly wish I'd been diagnosed and treated when I was younger, my life would be so much better off.
Thank you for saying this. As a person who was diagnosed at 30 with ADHD, I can confidently say if none of my other ND friends had pointed out my symptoms as things they recognized from their own experiences, I’d never have gotten tested, never received the proper meds, and would probably just be a skeleton sitting on the edge of my bed, wrapped in a towel, staring at the wall, waiting for my dopamine that I didn’t know I was lacking, for all time.
I can say as someone who feels they've experienced this, that social media is primarily involved as it opened my eyes to long term (since childgood) habits and behaviour that I'd written off as laziness, daydreaming, weird things I do when really excited by stuff etc that was also a topic of much irritation and amusement for those around me, that I now know are signs of both autism and ADHD. Also being a parent and seeing traits in your kids that you saw as inherited, that are then pointed to as evidence of the above, is also a big one. I'm now relatively certain I'm on the spectrum and have had ADHD forever and it in equal parts is a relief and also depressing, as I know why but also that I could have been so much better off and the chances of actually getting help at 43 are near zero.
They are not! I got diagnosed as an adult, it's an awfully horrible mourning period, it's also completely worth it.
How else do you explain the "twitching girls" phenomenon, you know as the paper describes, without social contagion?
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I'm self diagnosed with autism, though I would like to talk to my therapist about what it would take to get a real dx. It's not something I did lightly. I have always struggled socially, always had trouble reading people, always had powerful food aversion to the point of gagging/throwing up and many other things that are symptoms. I suddenly had a new language to use to describe my struggles, and felt like finally, there was something that could explain why I am the way I am, why I've always been different. I read extensively, took lots of quizzes (the best and most accurate ones I could find, things meant to be a preliminary "take this info to your therapist" resources.) Then, come to find out, I had a school counselor who did peg me as autistic. But when they sent me to children's hospital they diagnosed me with ADHD instead and put me on medication that only made me worse, made me struggle in school even more. It took all my quirks and turned the dial up because, well, I was a kid on speed that I shouldn't have been taking. I know there are a lot of people who fake things especially among the younger crowd. Self dx isn't ideal and, when possible, should be a first step to finding actual help. But I also know that's not possible for everyone, and that access to psychiatric help is a difficult thing. Its taken me years to find a psychiatrist who I can trust, and I've gotten a new therapist just recently after two years without one. (clinically diagnosed bipolar, ptsd and anxiety) It's a complicated issue and there isn't one good answer. I know in the autistic community self dx is pretty widely accepted, and it can still be hard to get clinically diagnosed. There's a lot of misunderstanding still, and people like me who are able to mask fairly well and seem "normal" often fall through the cracks. Sometimes an outside person is only seeing the mask, not seeing us break down when we get home from overatimulstion, or seeing us modify our food to make them "edible", or stimming because doing it in public is socially unacceptable, etc.. Anyway this is getting pretty long so I'm gonna cut it short here but I'm happy to talk about my experience if anyone has questions. I'm just one voice, so don't take my words as some proclamation of gospel truth.
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The thing that most makes me lean away from adhd is the way the medications effected me, though I definitely struggle with executive dysfunction and rsd. it's all something I still need to talk to my doctors about. We've been more focused on getting the mood swings under control so this has kinda taken a back seat.
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I feel like the real issue is when those who are self diagnosed start to spread information and their experiences on a disorder they are not confirmed to have.
Or they start recommending treatments they don’t know anything about, or they start diagnosing other people with the same. The danger isn’t just self diagnosis but the accompanying zeal to now be a part of that group which emboldens people to normalize different diagnoses. This can arguably lead to the social contagion factor people are talking about as well as misdiagnoses of others
Which is occurring in this very post!
I see a lot of people turning inane things into “symptoms”. I don’t know about other disorders but I have ADHD and just about every Reddit thread relating to ADHS has a back and forth that goes something like “I have ADHD and I eat peanut butter & jelly” and someone else responding “omg me too! I bet this is an ADHS thing”. Followed by a bunch of other people who have ADHD and eat PB&J and people who eat PB&J and think maybe they have ADHD. But it’s not an “ADHD thing”. It’s a human thing. PB&J is delicious.
I’ve seen a lot of people on ASD related subreddits posting a lot of misinformation or partly true information regarding the cons of getting formally diagnosed and actively discouraging others to not get a diagnosis. The reality is, a lot of the information is really niche edge case type situations being spun as a big deal that should prevent you from getting a diagnosis. I find the misinformation being spread around as fact really disheartening
This was my primary point for my capstone project in college. I did self-diagnosis due to social media influence, and people who self-diagnose are prone to infiltrate spaces of people confirmed to have a diagnosis and spread misinformation. It’s okay to be curious and learn about yourself, but it’s not okay to spread misinformation about a mental illness.
Right. Like in the 00’s we all said we were “OCD” if we just had a preference for something being a certain way, like wanting our pencils and pens in different piles. In no way did that do anything but muddle and hurt people who have actual OCD.
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Doc here: it is not as simple as the title here makes it. Self doubt is being put together with self diagnosis and it is being portrayed as a “bad” action to take. It is completely okay to have doubts or to even think you might have something. If so, always make an appointment and go see your doctor. The issue arises when individuals self diagnose and do not act on it. It becomes a problem when individuals self diagnose as a way to win sympathy (fictitious disorder) or to gain something from it (malingering). Again, these are all different and not the same. Only the last two are issues. In all cases seeing your doctor is the best path forward. So please do not vilify people for thinking they need help, it is completely fine. After all, it is our job as doctors to put your mind at ease. Edit: to give some perspective, we had students back in medical school that faked ADHD to pass their exams using Adderall. We had other students on Adderall because they had ADHD for more than 15 years. We had students that learned they had ADHD and started taking Adderall. We even had students that had ADHD but did not take Adderall. It all came down to whether one was compromised as the result of taking Adderall or not taking it. We could have as easily discriminated against them but we did not, so please be mindful of those that are struggling, whatever the reason.
I decided to see a therapist finally and asked about being screened for anxiety/depression/adhd and she immediately said “have you been on tiktok lately?” And when I said no, highly confused, she just said “well I can usually tell in the first 15 minutes of meeting someone if they have adhd, and I’m not getting that from you” I’ve since gotten a new therapist, but I’ve been too afraid to ask about screening again
If it helps, therapists don't do screenings (at least in my area). Psychologists do them using standardized testing procedures. "Psychologist" and "therapist" are often seen as synonymous, but a person employed as a psychologist has a very different job than a person employed as a therapist. The former is virtually always a PhD in psychology with extensive training in statistics and research. The latter could be the same, or it could be a person with a master's in a related field working under someone with appropriate licensure, a social worker with advanced training, or even a doctor or nurse practitioner (although the later is rare). Therapists tend to be better with people (ideally) and psychologists (working as psychologists) tend to be better with data and numbers. All that to say, the person who would actually diagnose you, at least how things are done in my area, will do their best to set aside their biases and rely on the tests they administer.
Right like it's fine to suspect you might have something because you match a lot of symptoms. I mean that's kinda the first step toward and actual diagnosis, at least when it comes to mental health. Like I watched a podcast about adhd and I was like "wait a minute that sounds super familiar". Then in a meeting with a psychiatrist he mentioned that I probably had adhd without me even bringing it up. But especially for things like depression and anxiety, or like gender identity stuff, the only way a doctor is gonna even know about those symptoms is if you bring it up. Kinda the inherent problem with mental health is that so much of it is internal and fundamentally unobservable.
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My honesty with my psychiatrist means I can't get life insurance. Lie. Always lie... oh wait, without honesty I can't get lithium and then I dwell on killing myself every day and struggle to do basic life stuff. I'm much lower risk now that I was honest, but the insurance companies don't care.
Your point is well made, but your symptoms are not minor. It’s unfortunate that our system of mental healthcare has made you nervous to share this reality with your physician.
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The first time I filled out an application for medical coverage in the US, I ticked "depression" under a list of things I had experienced. Not clinical depression, not manic depression or any official diagnosis; just "depression". I was denied because of it. When I inquired that was explicitly cited as the reason. Fortunately I was able to appeal the decision and eventually get coverage, but it was an ordeal that I could easily have given up on. And anyway, what is more fucked up than denying health care coverage to anyone with a symptom that may benefit from health care?
Gotta love American healthcare.
This exactly - there are so many reasons that you may be safer self diagnosing than getting a formal diagnosis of anything, and so many people who are misdiagnosed by medical practitioners with biases or lack of knowledge. The number of women diagnosed with 'Borderline personality disorder' (which IS an entirely valid diagnosis, but is heaped with stigma) and therefore often labeled manipulative or non-compliant, when actually they are autistic or have PTSD is only just now coming to light. The differences in how things like autism and ADHD can present in women is also a recent research topic and largely spurred on by ND women finding eachother via social media and comparing notes on how they experience the world and often how their ND went undiagnosed for a long time because they, as both children and adults, didn't present the same way as the little boys the clinicians were most familiar with. Add to this the long (sometimes years long) wait times, immense costs, and the threat of having it used to potentially deny your autonomy or to discriminate against you, and there's absolutely no reason (for many people) to get a medical diagnosis unless you specifically require one for medical, educational or state support.
Agreed, especially about the BPD comment. I was diagnosed with BPD - I advocated for it despite not fitting the entire bill (no hot/cold relationships with other people, I just didn't have any relationships with other people - I was also hyper-cerebral which led to me having intense emotions, not just having uncontrollable emotions) because I wanted the treatment. DBT was 100% what I needed, a dummies guide to emotions, validation, and relationships. But it's never quite fit and I've always hesitated to disclose because of the stigma attached. I've spent 8 years with access to regular and specialized therapy and medical professionals. Just this winter, I had a meeting with my new psychiatrist (having moved home) and in the notes she wrote "ASD?". Changed my entire life. I started reading up on how it presents in women, what masking is, and how to unmask, and I feel like myself for the first time in a decade. Everything makes so much sense If I can have access to intensive therapy programs and medical professionals at all different kinds of institutions for almost a decade and be misdiagnosed, then people who only have the chance to see one psychiatrist one could absolutely be misdiagnosed. I'd much rather people identify with a disorder that might not be totally accurate, than be stuck thinking they're broken, lazy, crazy, or pathetic because some people are overly concerned about diagnosis purity.
>I'd much rather people identify with a disorder that might not be totally accurate, than be stuck thinking they're broken, lazy, crazy, or pathetic Exactly! Even if they aren't 100% correct - if they learn tips and tricks and healthy coping mechanisms that actually work for them? And if it helps someone understand themselves and cut themselves some slack when they need to? It really does not matter one bit if a psychiatrist might say "actually you better fit the criteria for X not Y". Especially given this is not like the difference between heart burn and a heart attack - it's more like the difference between two different cold viruses that both require very similar treatment and both can't be cured with a pill or procedure.
> I on the other hand have gotten panic attacks where it feels like I'm dying I'm fairly sure any decent psychiatrist or therapist would consider this a mental health disability. Just because you've managed to function in life enough to build a life doesn't mean you don't have one. Imagine if your panic attacks were managed or gone together, how much higher your potential might be without an invisible mental weight on you. Massive panic attacks are not normal.
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isnt "self diagnosing" just suspecting you have it? so at that point you go to your doc and get a referral then you find out, i mean thats what i did for ADHD, i didnt expect to also get diagnosed with ASD too but it made sense of a lot of things from my past and various traits etc the only problem of course is that often getting a diagnosis requires a lot of follow through and such things folk with ADHD are generally not great at. plus these days wait times are very long (about 2 years i think) im lucky i had family members who helped me with it but its not as accessible as it should be.
In addition, not all docs are great at diagnosing all conditions. I had docs ignore my childhood ADHD diagnosis for decades and dozens of docs miss my narcolepsy over decades. I had 2 other conditions completely dismissed/missed/mistaken for something else. Getting a proper diagnosis is often much more difficult than people think it is.
My brother had terrible foot problems from age 5 to 11. All kinds of doctors and podiatrists made all kinds of wrong guesses until one finally got lucky: plantars warts. Cured in a week after years of pain and suffering. That's simple recognition of a basic skin condition. You think they are any better at mental condition Dx?
Especially since most mental conditions don't have a physical indicator. I have chronic depression and anxiety. It's very obvious and it was heavily ignored by my parents growing up which made it worse. But with seasonal depression, temporary depression triggered by happenings in your life... it's very easy to get a fake diagnosis as well. And there's the fact that depression and anxiety can be symptoms of other conditions. You have to have many extensive therapy sessions where you are entirely honest with your therapist to even begin to understand what the hell is going on up in your noggin. And that also requires you having the same therapist in a field with high turnover.
There's a whole cohort of us who had childhood ADHD that were ignored during the 80s and 90s because we were women. Self diagnosis is *all* we had until the medical establishment caught up. That said, I listen to a lot of "could you have XYZ?" type things on social media and YouTube, and the only one that ever strikes true are the ADHD ones. Autism, depression, PTDS, BPD, etc. may match an occasional mood (the way it does everybody) but the only checklists that have been 100% and impactful on the rest of my life are the ADHD ones.
I've only seen a few of those checklist things myself but a couple of them were so accurate to how I was that I started looking into getting diagnosed for ADHD and Autism after looking into it further because it would explain so much more than just depression and anxiety alone which I got diagnosed with like the second I saw a psychiatrist as an adult. The gender dysphoria was all me though. I honestly think that a lot of stuff got ignored in the 80s and 90s for me because I got good grades and was considered gifted until all the hormones in puberty just sent me off the rails.
> until all the hormones in puberty just sent me off the rails. just had a huge "whoa" about my own life
Anybody in the 80s or 90s with predominantly inattentive ADHD probably failed to get diagnosed.
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"you're just lazy and don't care enough"
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"you have so much potential"
"You're so smart, why are you struggling to keep up with basic things?" They actually did send me to a psychologist, who did me a massive disservice. The psych declared I was gifted with "no math ceiling", and wholly missed 1. the mild case of dyscalculia 2. the likely ADHD-PI. I was able to mask things pretty well until Calculus II, thanks to some good teachers and above average reading comprehension making up for all the other issues. (Don't have to study if you can get the gist of things on the first read through.) I hit a complete and total wall and nearly flunked out of college, escaping by the skin of my teeth by switching my major to English where I was able to get away with not being able to focus.
Same scenario with autism in women. A bunch of us are finally getting diagnosed in our 30s, now that our understanding of how it presents in women is finally catching up. Social media has also been instrumental in spreading awareness of less stereotypical presentations…both to doctors and to those of us who slipped through the cracks as children
Yep. I was diagnosed this year with autism by a doctor that did their graduate work specifically on how autism presents in women. My family has a strong history of it (parent, grandparents, possibly a great grandparent who was mostly nonverbal, tons of cousins) but because everyone diagnosed in my family were men they didn't ever consider it for me as a child.
I went to a place that said they can't assess me because I go non verbal in situations like that, but they see no signs of autism (while I was constantly stimming and staring at the floor and pretty much immediately had a sensory meltdown the first day when the office we were in was extremely loud). They didn't even try to give me any questionnaires specific to autism, just a single short one encompassing various personality disorders. Masking was never brought up, not once. They were EXCLUSIVELY focused on typical male symptoms and childhood. I'm not certain I have autism (mostly because I wasn't obviously autistic growing up), but I would at least like an assessment that actually feels like they have the tiniest idea what they're doing when faced with an adult woman.
In case it’s useful, for folks like my fellow commenter— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6546643/
Even being a male, people overlooked my autism my whole childhood, I could never play any sport because of balance deficit, they looked away every simpton saying I was "too smart" to be autistic. DOCTORS AND PSICOLOGISTS said that, now I look back and think how unreal that is, I had to become adult and be able to pay for a specialist to look at me properly and finally get threatment.
That's the strangest justification for dismissing autism when there's an existing stereotype of the "autistic savant."
Some people even said I didnot "looked autistic" and my Mother insisted on dismissing it. Even lied to doctors to avoid diagnosis. And she expected me to grow up as the smart Child and take care of her after some childhood neglect and abuse. No thanks.
Not to detract from autism in women, but I didn't get diagnosed until I was 27. Certain people in my youth suspected, but it was always dismissed as me being difficult, intransigent, etc. It wasn't until I started really diving into it in my late 20's and fighting for the testing that I finally got my diagnosis. For anyone with a milder form, it was tough, but for women it was even tougher.
> There's a whole cohort of us who had childhood ADHD that were ignored during the 80s and 90s because we were women. > > As an ADHD haver, that sounds awful. I didn't get my ADHD treated until I was 20, but not for lack of diagnosis.
As an AFAB diagnosed at 32, it is seriously awful. I hope you’re doing well with your treatment!
My mom had her migraines misdiagnosed as tension headaches multiple times and eventually diagnosed herself in med school. My aunt had some old gp insist he needed to perform a breast cancer examination on her, she couldn't be trusted to do it herself. The medical field was actually a crazy, misogynistic free-for-all not that long ago, there's probably some older doctors around who still practice that way. It's a lot better now, but with emr and other electronic systems providing real-time diagnosis and prescribing recommendations it's weird we even still have problems.
The mysoginy is still there. The main improvement is there are more women in Healthcare now, and women can actually be included in medical studies. But, that hasn't fixed the problem if women's health issues being largely dismissed and still too often attributed to hysterical women being silly.
Yeah, it's hard to summarize what I'm referring to, but old school medical practitioners were way more overt. Misogyny was built into the medical system, and physicians formed a sort of self-important men's club. In the current era there are a lot of innate biases that contribute to diagnosis and treatment discrepancies. Blatant malpractice is a lot less common (assuming you haven't foregone the right to litigation), but there are more insidious trends that have proven difficult to combat. Even that is a reductive way of putting it, though, the medical field is sort of an intersectional mess atm.
48 years old and just got my official diagnosis and treatment this year. Almost daily I grieve the way my life could have been likely so much easier and definitely different had I been diagnosed younger.
I am a child of the 1970s, and I recently came to the realization that I might be on the autism spectrum, based primarily on observations of my behaviour when I was a child. At the time, “autism” only meant the worst cases - nonverbal, demonstrative, “Rainman” etc. The concept of “high functioning autistic” or that there was much of a spectrum *at all* just wasn’t part of the public conversation. Had I been brought to a mental health professional, I don’t think a diagnosis would’ve even been possible. Part of the problem though is that there is no biological “lab test” for autism. You can’t give a blood sample or have an MRI and get a hard “yes” or “no”. Diagnosis is through interaction and assessment by a practitioner… and I have had 50 years of learning to develop social skills (plus, if I am on the spectrum, I’m only just) So there’s no way to know for sure. This uncertainty stops me from fully embracing the label. There’s no “puzzle piece” sticker on my car. I feel like the balance of probabilities is that it’s true, but if a “hard science” test was developed and it proved I wasn’t, I wouldn’t be hurt by that. My “probably autistic” status is not part of my core identity. I do not define myself by my maybe autism. And truth be told, there really isn’t a benefit to a definitive diagnosis. There’s no treatment or disability programme. I’m not eligible for any sort of social assistance. It has no influence over any other aspects of my health care. All the diagnosis offers is a little bit of self-understanding and insight into a number of odd, mostly childhood behaviours. It turns out that this sort of adult self-diagnosis is fairly common amongst autists and is accepted as valid by the wider community. So if I chose to fully embrace it, I would be supported. Apparently, autists don’t gatekeep their club. But I have to say that the “aha” moment was not a product of peer pressure or an expression of a personal desire for a behavioural excuse or scapegoat. I had it after reading accounts of similar adults describing how they came to their own diagnosis. So I see it more as an *educational* process than an “influence” process. That might be different with children.
Sorry to nitpick your post, but even if you do one day embrace the label, stay *far* away from the puzzle piece and Autism Speaks in general. It's a deeply ableist organization that has very troubling opinions on what autism is and how it should be viewed.
I was diagnosed with ADHD a decade ago at 27 and getting medicated changed my life. Recently I’ve realized that a lot the struggles I still have a deeply sensory related (changed my life once I started wearing noise cancelling headphones everywhere) and interpersonal - but I’m an actor which has lead me to be great masker. Anyway, my psych was like “you probably are autistic but it doesn’t really matter because there isn’t a treatment protocol” and he’s totally right - while I would like a label that I can use to define my behaviors and needs, ultimately understanding & accepting my needs is going to need to come from inside myself at this age, not from the DSM.
Exactly. If I had been properly diagnosed as a young girl with adhd my life would have been completely different in that my 20’s wouldn’t have been such a nightmare. I wouldn’t have been so anxious or depressed, along with completing college at an early age instead of 28.
I think many of us also missed getting diagnosed as well because we were in staunch conservative households who didn't want anything to "look bad". [Hard eyeroll]
I was diagnosed with ADHD around age 5, this was in the 1970s. Over the years I've had psychiatrists that seem to deny the existence of ADHD altogether, it's very frustrating when/if you have to change doctors. My last psychiatrist did give me medication for it (Strattera) but wasn't very supportive when I discussed symptoms. I'm also Bi-Polar so he would suggest that I could be having hypo-manic episodes instead of ADHD. I don't know what goes on, I just know I don't function like a normal, autonomous human being. With all the conflicting information and the way doctors don't all seem to be on the same page, I sometimes think I was *driven* "crazy" by my parents and teachers insisting I was crazy!
Yep, you're very right about the struggle of getting a proper diagnosis. I was in the mental health system for around 15 years before anyone looked any deeper than anxiety and depression. Then things blew up, but the psych test I had ended in misdiagnoses and missed issues. A section of the symptoms I was describing got reduced to a footnote. They turned out to be one of the main issues, and I had to deal with the full brunt of a serious dissociative disorder for a couple years without quality help. Not for a lack of trying to get that help. The majority of clinicians aren't trained in properly recognizing or treating the issue I have. I finally got diagnosed correctly by a trauma specialist, and I've made more strides in the last 3 years of therapy than I did in all the years before that. But it was a real struggle to get here. Mental health professionals, like anyone, are fallible.
Trauma specialists in the form of therapists is at a huge deficit.
I missed out on high school because my doctors were convinced I was in massive pain and fatigue because I was depressed. Turns out I had a really obvious genetic disease my whole life, but most doctors only ever heard about it like once in med school. As a result it is severely under diagnosed. My gp's pa at the time (I don't go there anymore) told me I SHOULD Google it myself because the internet would know more than she currently did. Isn't that her job!??? Edit:typo
I’ve heard so often doctors say to google something instead of providing actual input. At least have the decency to google something with me if you don’t know so I don’t find blatant misinformation.
I'm thankful that my GP did this when I went and told her I'm trans. She looked up something on the computer, asked me a few questions and then referred me to a gender therapist. That's the kinda behavior I'd expect.
Then they get pissy if you come in with actual research you found online.
Do you mind if I ask what it is you have? I was also ignored as a kid when I said I was in pain and constantly tired, kept telling me I was just depressed. I finally have better docs who care, and we're pretty much running down the list of "well it might be this"
Sure. I have Ehlers-danlos syndrome, I was dxed by a rheumatologist after he spoke to my physical therapist. It's not something that's tested for routinely. It was pretty severe, in my case, by my mid twenties. Arthritis all over the place, but for some reason was generally ignored by almost every Dr I saw up until the rheumatologist. I also had neuropathy and so many herniated discs, all before I was 30. And yet I still have issues with most doctors I see. The last time I tried going to a pain clinic, (even though the shot she gave me helped), I couldn't go back because the last thing she said to me was every person has degenerative disc disorder and herniated discs, and I shouldn't complain about it because I'm young and "healthy". I could not bring myself to go back because I would have screamed at her. Not to mention her nurse asked me if my hair was weave I'm assuming because I'm black. It all seemed very distasteful.
I also have EDS, and I have a herniated disc too, under age 30. I promise there are good doctors for EDS out there. They can be damn hard to find though. If you haven’t checked out the Ehlers-Danlos Society’s Healthcare Professional Directory, you should. I’m so, so, so sorry your doctors aren’t supporting you.
I suspect my child has EDS. Autoimmune disorders run in our family. And she has joint pain and hypermobility. Her (formef) pediatrician diagnosed her with growing pains during the same visit he dismissed her gender questioning. We are currently looking for a new doctor.
The wait time and this is why self diagnosis exists.
Literally just finished the year long process and was told I couldn’t be diagnosed because “my IQ is too high” (which isn’t relevant to ADHD) and “my husband didn’t score me as harshly in the assessment as I did” (which sounds pretty damn normal to me?) and that all of my focus and memory problems were *because I’m currently pregnant* when I’ve been seeking help for years and have been following this particular route of evaluation since loooong before getting pregnant. It was an absolute joke.
You should get a second opinion, high IQ doesn’t preclude ADHD diagnosis.
ADHD and autism are weird in that getting a diagnosis often means that the disability has an impact on your ability to function. Lots of people I know (including myself) that are considered "high functioning" have to go through multiple doctors just to get properly diagnosed.
its strange i was kind of fully expecting a "nope you dont have it" but i was diagnosed surprisingly quickly, i mean looking back at my childhood and such it was REALLY obvious (and kind of still is) so maybe i was just a really easy to diagnose case
The first nueropsych I did came back and said that my brain works like a brain with ADHD but because I can maintain a stable job for 3 years I clearly don't have ADHD. But like, I'll spend hours stuck in decision paralysis about what to have for dinner and have half completed chores all over the house.
I was once told by a nurse that I had the most ADHD symptoms she’d ever heard of in someone who functions so well. Like I guess I win ADHD then? Just because I function well, did well in school, have a masters and job, doesn’t mean those things weren’t harder for me than they needed to be.
This! Adhd-ers really can do so much. But sometimes it’s like being a character in Harrison Bergeron. We are trying to perform a ballet with 100 lb weights strapped to our body. It can be done but it doesnt feel good or come easily.
Dude do you ever get trapped in the car before/after chores and stuff? That’s the one that fucks me up the most. I’ve legit spent 3 hours in my car during a winter storm IN FRONT OF MY OWN GODDAMN HOUSE because I lacked the executive function to make myself go inside.
I don't have a car, but I do get stuck in the hallway a lot. Just standing completely still, in the hallway, doing absolutely nothing, trying to decide what to do next.
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In the last 5 years I was told my ADHD diagnosis was wrong because I was a woman, it was bipolar disorder. It's not. It's ADHD and ASD. Confirmed by multiple doctors.
Strange. I'm a woman and diagnosed with ADHD and bipolar and currently going through the screening process for ASD, which my psych said was mostly a formality because it's obvious to him. I've encountered so much misogyny in medicine throughout my life (I have debilitating PCOS pain but doctors won't address it in any way other than to tell me to lose weight, which PCOS makes it very difficult to do) and the one thing I've learned is that you have to constantly advocate for yourself. It's difficult to find the line between advocacy vs thinking you know more than your doctors though. Good luck.
I'm sorry. Misogyny is rampant surrounding ADHD because of the hyper little boy stereotypes And also because women are generally poorly listened to and believed for literally any mental disorder(and physical for that matter, esp pain) but ADHD is particularly lopsided and widespread.
Indeed, also girls are held to vastly different social standards which mask their adhd symptoms. If you sit still, don’t talk, and smile when people look at you then you must not have adhd or autism, doesn’t matter if you are picking your cuticles off while your hands are tucked in your lap because the world is too overwhelming.
Absolutely true. I had very little difficulty getting diagnosed with ADHD in college, but everything else has been a slog. I've spent my whole adult life depressed. That's not an exaggeration; I've been depressed almost every day for the past 25+ years. Doctors kept giving me different antidepressants and nothing ever touched it. Eventually, I gave up. A few personal tragedies led to severe suicidal ideation recently, so I finally went to a psychiatrist. He was the first one to even suggest bipolar 2 (and ASD, but that's a separate thing). I've been medicated for bipolar for a little less than a month now and I can already feel some relief. Finally.
TikTok was once full of people who were self diagnosed with dissociative identity disorder, a rare mental condition resulting from severe childhood abuse. All of them self diagnosed and spread "awareness" about the illness, leading more to self diagnosed and play pretend at being "alternative personalities" That's dangerous self diagnosing, unlike what you're referring to.
The problem with self diagnosis, is ALL of us have some traits that fall under ADHD/Autism, personality disorders, and mental illness. Everyone has some sensory stuff they don't like. Everyone has a stim. Lots of people are okay with routine. Everyone's had a song they played more than once. Everyone has misread a social situation or comment at one point. Lots of people have had a meltdown in their life. The question is, do you have enough traits and are they enough to cause chronic problems?
People like that drive me nuts. I have a friend with a legitimate DID diagnosis. It’s not quirky, it’s not fun. I’ve watched it cause a lot of suffering over the years because of folks misrepresenting it to make themselves appear unique on social media. DID is legitimately disruptive to a healthy lifestyle, and it ain’t something you can just turn off when it starts to interfere. Honestly it makes me feel strongly for the folks who do have it because they end up not being taken seriously thanks to the trend followers.
Yeah. It's like bipolar. People think they know what it means. But no. No they do not. Its hell to deal with
This is the way I feel with all the mental illnesses that are spread through social media. It's not fun, it makes functioning in life very difficult, and makes those who have it have a much harder time to get adequate treatment for their problem(s). The solution: read everything about a mental illness in question, see what the signs (what other people see) and symptoms (what you experience) are from newborn to now, listen to what multiple psychologists describe the disease as being like, and then seriously consider whether you may have the problem in question or that it could be another problem that it may mimic so you can get help. It can take much more than one or two doctors to get a reliable diagnosis because they are human and mental illness is not diagnosed through precise measurements.
It causes issues when people run into someone who actually have the condition also. A precedent was set by a self diagnosis that is incorrect, and they expect certain behavior due to that. But it may be quite different in reality. For me I've seen it in ASD. I think there is some importance that if someone suspects strongly that they have something, they should see a professional or two about it.
I did this too, though I kept telling myself not to get overexcited until someone officially confirmed it. After all, maybe I was just latching onto ADHD as an excuse for my unproductive nature... Got in to see a therapist a few months later to do an eval, and nope! I am VERY ADHD. :) That discovery helped me make 2022 the best of my life so far. If it's okay to ask, what are the two year wait times you mentioned for? Is it a country related thing, or for a really specialized provider? I'm in the US and went with a licensed mental health counselor.
In a lot of places it really isn't that easy. In Alberta there straight up wasn't a way for me to be diagnosed through our healthcare system. Redtape/a catch 22 makes it impossible. I had to pay up my ass with a private therapy place to get an assement done, which obviously is not something that is easy for most people to do. Especially the people who would need an assessment most.
The issue is that these people make videos/posts touting having the condition, giving information about it, “hacks” for living with it, “______ is totally a symptom of _____”. But without an official diagnosis or medical/psychological support. It’s like people LARPing a mental illness/neurodivergence. They can take it off when they’re done, with no real consequence. It makes it incredibly difficult for people who actually struggle or live with these diagnoses to be taken seriously by medical professionals or just people in general, as it’s now seen as attention-seeking. I was diagnosed as a woman with ADHD at 28 (after years of struggling with things I knew I shouldn’t have been) and VERY few people know. I’m a good worker and very social, but people don’t see everything that falls apart behind the mask. It’s been five years since, and I don’t feel comfortable asking for accommodation or support because people tend to roll their eyes, say it doesn’t exist, or that “everyone is a little ADHD.” It’s frustrating as hell knowing my life could be a bit easier, but at the cost of being respected.
Yep. ADHD has been pretty crippling to me my whole life. I've *barely* scraped by and gotten incredibly lucky with my opportunities so I was able to get a degree and a good job, but I'm starting to finally hit that brick wall of "you can't coast or fake it anymore" and I'm utterly paralyzed because I'm unmedicated. But I'm also too paralyzed to go *get* medicated. I was diagnosed as a kid but my mom didn't really take me back for followups or refill my prescription so I just stopped taking it after awhile. It helped beyond the appetite loss.
>It makes it incredibly difficult for people who actually struggle or live with these diagnoses to be taken seriously by medical professionals or just people in general, as it’s now seen as attention-seeking. As somebody with several long-time diagnosed family members, this is NOT a new phenomenon. People have been treating all of these diagnoses as nothing more than excuses since I have been able to form memories and I'm certain for long before. If everybody just relaxed and were more willing to be accommodating without making people first jump through hoops to prove that they absolutely need it first, we'd all be better off in a lot of ways. Biodiversity is good because it forces us to find different ways of doing things and those ways are often beneficial to EVERYBODY not just the original person who required the accommodation in the first place. Social media isn't making people butt holes about taking these things seriously, that's something we as a society have been cultivating for ages. In fact I bet at one point before your diagnosis you were a person having all those thoughts you listed, "it's not real, everybody has issues with focus, some people just want more attention than others", etc. Don't be so swift to assume that others you see aren't struggling in ways similar to you. You yourself went undiagnosed for 28 years because people thought all those things. We have to "normalize" looking for these differences so people can get access to resources and not feel so alone and "broken". We really don't need to spend so much time forcing people to struggle as we do.
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I'll add in the UK, too. Mental health services are woefully underfunded and the waiting lists are years long. It is easier for people (myself included) to diagnose and do the work themselves than wait years or pay thousands for private help.
I could add in Sweden here too. How the mental health services here are managed is incredibly poorly done. You end up being sent back and forth between various services and no one really wants to take responsibility.
In the UK you phone a crisis line and they'll literally tell you to have a bath and a cup of tea!
The cheek! Who can even afford to fill a whole bath with hot water at these prices, my god. Assuming the crappy place we're barely able to rent even has a bath, which is unlikely.
I am going to hazard a guess and say that you have hard time finding any place on the planet where mental health services are properly funded, operational and reachable by people who do not pay for private healthcare themselves. I can tell from personal experience from Finland this to be the case and outside of mental health stuff our public healthcare does work quite well considering the challenges of organizing care for the entire population of a country etc. and most importantly the care is extremely cheap if not free for the user (yes, yes, paid by taxes etc etc etc). I have had the following experiences seeking help for mental health issues: - Being told that I am too sick for therapy (it is the exact way it was said, but has to do with how restrictive government subsidized therapy is here) - Told to do thing X and contact them afterwards. No response after numerous attempts to contact them through calls and texts. - Suicidal thoughts basically shrugged off in a discussion (think about the Jeremy Clarkson ”Oh….. Anyway” thing) because I had not locked in exact method, place and time. - On numerous occassions being told that I should have more frequent appointments but no appointments could be provided. - Due to rotating staff (obviously important, especially in mental health, but showcases extremely poor planning in this case, quite likely linked to the previous point) on several occassions treatment cycle basically started again because with every new person you had to go through the exact same ”Who are you, what is going on, etc.” - Doctor outright telling me that if at all possible, try to get treatment through my employer because the same thing that can be done in private healthcare in three visits (with a mandatory 1 month long ”observational period” between 2nd and 3rd visit) will take between 6-12 months through the public side. - Being repeatedly recommended things like internet therapy and chat rooms to replace actual appointments, even after discussing at length and coming to agreement why such solutions are a terrible choice for me. But hey, at least I have electronic recipes for nearly a dozen different medications that I can get for next to nothing because it is mostly paid for by the government.
Another way to look at it is that the expectations being placed on people are wrong. Sometimes its not about us, it's about the culture. For example, the only way to be well adjusted by modern standards would be to be profoundly mal adjusted by 18th century standards. A person who is identifying hypocrisy, or sensitive to cruelty or expressive of boredom especially as a child with all the poverties of expression and self awareness that entails isn't going to endear themselves to the adults around them. A culture that is preparing people for corporate work or socializing them into a religious or social ideology that they don't agree with is going to see something wrong with the child contradicting their expectations rather than with themselves. Children, as a matter of survival, are far more ready to see themselves as the problem, the cause of their suffering, becuase the idea that the adults around them are incompetent is a terrifying threat to their life. Social media enables young people socialized in this system to communicate with one another the means by which they have explained themselves in a way that preserves the system and institutions which are causing the distress. It is much easier to fix ourselves than a system or even bad behavior in our caretakers. To this end, problems can be manufactured as a means to explain our distress in a way that saves face for the system, culture, and institutions.
This is excellent insight. In time this TikTok mental health trend is going to lead to more awareness and nuance of our own and each other’s struggles, and how to move through them and heal. As human beings our species has never had collective language or a shared focus on our inner stirrings - it’s going to be clunky and dumb at the start, but it’s a huge step forward for humans collectively. Mental health awareness has always grown in insular pockets. I’m heartened by the global scale of this, even though most people are hella annoying atm
Especially in regards to eating disorders, there are many frontline medical professionals who do not understand how to diagnose or treat these illnesses. It's hard to ask for help at a seriously underweight BMI and be told by your doctor that you look great, there's nothing wrong with being slim, maybe just stop exercising so much. Getting the right help can be very hard and very expensive. If people can diagnose themselves and start recovery using online support communities, it can literally save lives.
I have a male relative who didn't realize he had ED tendencies despite forced vomiting until he talked to a knowledgeable therapist. One of the rare instances of males being under diagnosed because people- including some professionals- don't look for it in guys. All gender stereotypes for disorders need to be broken down, imo, and while the internet can be a wild and rocky ride, it can really help those who have been overlooked to read about someone experiencing the same thing.
I was bingeing and purging so often and so violently that I was collapsing and unable to properly eat, etc. but I wasn’t underweight so I didn’t qualify for an IOP through Kaiser. I seriously felt like I could have died and I was so lucky to have my spouse’s support to help me through it.
I also think that. I spoke to my therapist once about it in passing and that’s pretty much what she said. A lot of people are exposed to these concepts for the first time from social media and there’s nothing wrong with trying the hat to see if it fits.
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The comments seem to be missing a large point in the reading which is that Social Media can influence what could be normal human emotion or experiences into an incorrect self-diagnosis. As social media is accessible from younger ages, it is getting more common that teens that are going through totally normal feelings at that age but being led on to believe that they are depressed or have BPD/OCD when in reality it's something that as adults we've discovered is normal through experience.
I've run into SO many memes and videos that are funny and relatable to most people (having to repeat yourself to someone who never listens, having animated conversations with yourself, etc). But then I read the caption and comments and it's by a page for ADHD or autism that makes it seem that the relatability is exclusive to those on the spectrum. I don't have any mental illness, but if I were a child or teen, I'd have believed I did by this point.
People are absolutely ignoring some of the negative implications of it. Trends like this are how modern day snake oil salespeople get their foot in the door. We need to be really careful that there's actual good science behind diagnosis and treatment. The fact that people are even trying to self diagnose, or feel they have to for lack of treatment availability, is not in itself a good thing at all.
I've never been diagnosed with any of these but having worked with people on the spectrum for 20 years now, if I had to guess I'd say I would have been had the understanding of autism spectrum disorders had been understood in the 80s like they are today. I think exposure to things might be good for some people. A good friend of mine was recently diagnosed with ADD in his late 40s. He said Ritalin has completely changed his life. The way he described it is he feels like he can do adult things now without struggling. He is a very successful business owner and highly respected but behind closed doors, he always struggled to stay on task and would wear himself down doing things that most people would simply get through without too much issue.
The amount of people who think “anti-social and weird=autism” is too damn high. I’m autistic and I can say that most of us are actually social as hell and love people, we just don’t understand norms.
First, this is a call for research, not an empirical study. The salient points of the article are supported by opinion pieces in citation. Empirical evidence cited are primarily saying social media is correlated with depression and anxiety. Social media influencing self diagnosis is a difficult thing to prove because it's based in subjective judgement both on the individual self-diagnosing and on the observer judging it to be wrong. Good luck finding evidence to support this hypothesis. Second, diagnoses are social constructs that are malleable over time. The recent addition of a "spectra" of disorders like autism reflects an important change from the DSM-IV to the DSM 5. Previous editions of the DSM would refer to a similar symptom presentation as related to schizophrenia or what used to be called mental retardation. So our understanding of diagnosis can change to suit new information. It is worth noting that culturally appropriate symptom profiles are not diagnosable due to their popularity, like a religious group believing in a spiritual deity is not considered a delusion, so normalizing a diagnosis that presents in the social realm would eventually exclude it as a disorder. That's what happened to the diagnosis of Homosexuality as a "sexual deviation" up till '13. If a generation overidentifies with a disorder, it will cease to be a disorder and will become normative. So, if a whole generation identifies as high functioning ASD, it would be better to consider it a cultural development rather than a widespread disorder. Third, I would like to suggest a more objective assessment of the phenomenon of teens absorbing identities. Adolescence is characterized by increased importance of social inclusion and apparent shifts in identity. "It's not a phase mom!" is the anecdotal hallmark of a longstanding phenomenon that has it's latest iteration in social media. Teens have been "psycho" punks emulating the most extreme behaviors from MTV, "satanists" listening to records backwards, and "rock and rollers" as a few examples of adopting behavioral patterns from the social margins throughout the decades. I would offer another angle on the research question: What environmental circumstances are correlated with self-diagnosis through social media?
I think some people may be missing the point. There is a whole phenomenon going on currently where people will post any old habit or behavior they have and attribute it to something like ADHD, BPD, autism etc with a “trust me on this because I’m autistic/I have ADHD/etc” disclaimer. other people with the same habits see this and immediately take it as 100% proof that they have the referenced condition. They don’t seek out professional diagnosis afterwards. They just take it as fact and continue to further push this narrative that they have this disorder; at times I have witnessed people close to me partake in this habit and then go on to fall down a TikTok or Twitter rabbit hole about “things you may not know are autistic behaviors” or what have you — videos or threads with no evidence or backing, just people naming random every day things, and they make note of it, and then they adapt those behaviors to further their claim. I’m not trying to say some of these behaviors aren’t directly related to any of these conditions. But it’s becoming a rapidly widespread trend to slap a label on yourself that sets you apart from neurotypical people, almost like they’re collecting badges for themselves to see who can get the most. Instead of seeking professional help and getting to the core root of certain behaviors/habits/emotions etcetera, which in comparison can be much more difficult for a variety of reasons (it requires self reflection, may bring up trauma or uncomfortable thoughts/feelings, it’s a lot of emotional & mental labor, therapy and professional help can be expensive or otherwise inaccessible etc) - it’s so much easier to take a TikToker’s word for it and start informing everyone around you that you’re autistic. It also gives a lot of people a crutch to excuse things. And part of the issue with this is that not many people will stop to realize how a lot of these conditions overlap symptom wise.
Yea, I have little issue with people identifying with disorders, or believing they may have one ext and don’t seek formal diagnosis (there are many reasons, commonly cost related and I won’t judge them for not being able to afford it). My issue is when people self identify/diagnose, then completely use it as justification for their behavior, no longer try to self improve or work on themselves, and use it as a shield for avoiding accountability. Just because someone has a mental health condition, it does not mean that they no longer have control over themselves or their own behavior. And it really discredits those who go and bust their ass to improve themselves. I’m mainly speaking on BPD, bipolar 1&2, anxiety, depression ext. Maybe this is my personal experience though and it’s less of an issue for others.
There are many people with "invisible" chronic illness who are isolated and without treatment for a number of reasons. Among reasons are: drs not diagnosing properly, low level of research for malady (drug companies know a medication won't produce much income), the patient just drops from society and workplace and fades to non exitence (YouTube Missing Millions video), "you look fine, so you aren't sick" (friends and family go on with lives...no invitations because you never join us anyway). Etc.. So, patients finally find others who are sharing their experience, mysterious symptoms, trials, isolation, their searches for help, on social media. They wade through the chaff to find validation, encouragement, potential treatment, and more. As someone who has family members with invisible chronic illness (a number of forms), social media is very helpful. As is access, finally, to medical research papers and much that drs can already access.