EDIT: please, if you don’t agree with the arguments in the video, come in and discuss, don’t just downvote the thread.
I found this video with many arguments supporting self-diagnosis validity and wanted to share.
Main point may be that there is no valid reason to look for a self-diangosis than the fact of being autistic, and needing support for that. At least until there will be equitable access to medical care, self-diagnosis is the only way for people to understand themself and understand the support they may need in their life.
But, there is much more in the video, take a look at it by yourself!
I don’t think it’s a good idea to be convinced of something that is not supported by a professional expertise. What if you are wrong?
However, there is no harm to find similarities with autistic people, and use their experience to improve yourself in some situations if their tricks to handle them also work for yourself.
I personally suspect I am autistic, but I won’t be convinced until it has been approved by a professional (if I ever feel the need to know for sure). Meanwhile, I like to read experiences from others and sometimes, they provide tips that really helped me. But the best thing I learned so far is that there is no problem to be different and do things your own way most of the time if it is much easier for you to handle this way.
I agree with everything you say except with the following
What if you are wrong?
Exactly, what if you are wrong? What bad is it? What would change if someone thinks he is autistic, and he isn’t? Why in the first place would anybody think he is autistic if he wasn’t?
These are serious questions, not rhetoric ones
I won’t repeat what others said, but another point is that some people are desperate at feeling “special” (or serve a narrative where you are not responsible for your failures). By accepting an incorrect self-diagnosis, you can start to mimic autistic traits (even unconsciously) to fit better the label you desperately want to wear.
I have to admit I was too happy and relieved when I started to suspect I was also autistic. It was somehow validating my whole life, and providing me a convenient explanation for all my failures and why I am alone nowadays. But after a while, I realized it was not as simple, and I could just be desperate at finding an external cause to this, rather than objectively trying to determine whether I truly am autistic.
In the end, I realized being autistic or not is not what should matter to me. It shouldn’t change who I am. Instead, it is giving me a direction to follow to improve myself, which is a great improvement compared to before. I can be wrong on my self-diagnosis, but the direction I follow is a good step forward whether I am autistic or not.
The only thing I can think of is if a significant portion of people self diagnose as autistic and they really aren’t. Say they’re convinced by some silly stereotypes they’ve heard
That won’t impact that person. But it could mean other people starting to take it much less seriously in others which may be harmful to them I don’t pretend to know if that would happen. But just a thought
This is a good point, and it may be what some people imply by being disrespectful.
I’m not on TikTok, but I understand that this may be what is being happening (or at least perceived) there
this is a helpful comment
What if you are wrong?
What if the ‘professional’ is wrong? I self diagnosed after I was already in my 50’s. This means that I went for over 50 years without an assortment of professionals figuring it out.
There is zero doubt in my self-diagnosis. It wasn’t made on a whim. It wasn’t made in a rush. It has been life changing.
Shocking that people are downvoting you. I self diagnosed and then went to see a doctor to check my findings.
I read a ton about it, asked around and made some tests on my own because I was curious and wanted to know if and how my experiences were reasonable. The outside picture turned out for me to be very important.
Turns out, I was right. Multiple doctors supported it. After a little more than a year now and multiple visits to many specialists, we know why this hasnt been picked up on.
I also visit a group of people diagnosed or seeking diagnosis. Its mostly how you say, doctors can absolutely be wrong and often make wrong calls. But somehow the patients are the ones dumped on.
I think a lot of folks have a superiority complex with their diagnosis, as if that was somehow making them „true“ or „better“ than folks without and there is the „boogey man“ who claims to be something to get „aTtEnTiOn!“ this is a strawman that anti lgbtq folks use for example to dump on trans people. I have to assume that this is the case here too.
Sadly, lemmy is partly socially isolated folks locked in moms basement who try to win the internet. Its not about winning folks. We‘re not better than you and vice versa.
There are extremely few resources available to someone my age. I’ve been married for a very long time and figuring this out really helped resolve some issues we’d struggled with. I have a successful, professional career.
I simply can’t come up with a compelling reason to get officially diagnosed. If someone can give me a compelling reason to do so, then I have the means to do so. I just don’t see the point of putting myself through it nor taking up the limited professional services where someone else desperately needs the professional diagnosis and the resources it would make available to them.
In a lot of ways, autism diagnosis now is where diabetes diagnosis was 25 years ago when I got that diagnosis. More doctors are starting to have an awareness of it, but few are even qualified/willing to diagnose. I had all of the signs and test results to show I was diabetic, but the doctor I went to was unqualified/unwilling to declare it.
You‘re making perfect sense. I have nothing of value to add to this.
If you dont have kids that might benefit from you having a diagnosis and them having a resource to pin their own struggles in life against, its not really that beneficial.
For me it was necessary since I hit a roadblock in life when covid hit. If you ever hit this roadblock, you should probably go on with the diagnosis nut given your completely correct assessment of diagnosis today, a couple years later (if ever) makes no difference but improves your chances of a correct diagnosis. Additionally, you will always have jerks questioning your words because of their mental health, not yours.
I don’t think it’s a good idea to be convinced of something that is not supported by a professional expertise.
Professional expertise is not something that is locked up and can only be accessed by a professional. You’re suggesting something equivalent to no lay person should be allowed to change their own brakes on their car because of the professional expertise involved.
In the course of self-diagnosis, one has access to a ton of professional expertise and assessment without ever having a face to face with a professional.
I tend not to trust myself on subjects I am not an expert. It feels strange to me to give more credit to a few hours of research / reading books than a professional who likely studied the subject in much more details, and also encountered other autistic people.
Besides, we have so many biais about that. Finding an answer to your « uniqueness » is so convenient, that you will likely reject anything that does not fit the story, and put emphasis on things that fit the story. Even if you were an expert, you shouldn’t be the one to evaluate your own case.
I don’t say professionals are perfect and make no mistake, but trusting yourself on subjects as complex as this one will likely lead to the wrong conclusions.
Anyway, my message was not really about that. You are free to consider yourself as autistic if it helps you. I personally won’t do it for myself because I do not consider myself to be competent on the subject, and I don’t think it’s that important for me (I understand that it can be very important for others).
I prefer to focus on my issues and the solutions I can find, and if those solutions are coming from autistic people, it just makes it easier for me to find resources about it.
than a professional who likely studied the subject Unless you find a doctor where that is their specialty, then the likelihood for most other doctors is that they have only spent a few hours on the matter and possibly quite a long time ago.
Finding an answer to your « uniqueness » is so convenient, that you will likely reject anything that does not fit the story, One can be scientific in their process. I also didn’t come to this completely solo… I’ve been married for a long time and my SO has a masters degree in education. There’s a decent chance that she’s had as much professional training on the subject as many doctors. We’ve been looking for answers and doing research for years, not hours. Even though I fully accept that I am autistic at this point, I still look for information that contradicts that conclusion. Usually what happens, though, is that I’ll stumble upon yet another thing that fits perfectly with the diagnosis. The same person who did the video in this post has another one about autists walking on the balls of their feet. I had no idea this was an autistic trait and I’ve done that my whole life.
It’s frustrating that so many professionals don’t have training on autism. I would have had a lot of life benefit if I could have been diagnosed decades ago instead of only recently. As I mentioned to someone else, I’m not averse to getting professionally diagnosed, but I can see absolutely no benefit in doing so. I’m in my 50’s. I’m not aware of any resources that will be opened up to me upon an official diagnosis that make it worth the time, effort, and cost. I remain open to learning otherwise and reconsidering…
no lay person should be allowed to change their own brakes
If the lay person in question has no expertise, fuck up the installation, and he kills a person he lend it to because his brakes didn’t work, he’ll be held responsible for basically sabotaging his car
A real diagnostic test is somewhere between extremely hard and completely impossible to get for a lot of people.
A ton of autistics still need to have some idea of what they are struggling with.
The worst case scenario, that them kids on their tiktoks are WRONG, isn’t scary enough to validate gatekeeping.
Self-diagnosing is a very dangerous game, however spreading information on what a condition is like can be very helpful though, but people actually going around and telling people they have self-diagnosed OCD, autism, aspergers is absolutely ridiculous. “Self-diagnosing” in this video is spreading the belief you can actually, medically diagnose yourself, which is bonkers.
The way I see it, recognising certain behavioural traits which could be explained by a condition, is an important thing. Spreading factual information about them, equally as important. But actual, serious self-diagnosis is not only disrespectful to anyone actually suffering from the condition, but also incredibly narcissistic, arrogant and ignorant thing to do.
This is just spreading anti-science propaganda, which shouldn’t be welcome here.
serious self-diagnosis is not only disrespectful to anyone actually suffering from the condition
your assumption is that people self-diagnosing is not suffering that condition. Why do you think so? If someone is self-diagnosing, maybe, probably, it is because he/she is suffering. This is one of the main point in the video. Did you watch it?
Also, a lot of people may not have access to a diagnosis, thus making people diagnosed and refusing other poeple self-diagnosis a sort of privileged elite.
But again, the video already answered those 2 points. The anti-scientific one probably in the first minute…
your assumption is that people self-diagnosing is not suffering that condition
Definitely not, I am assuming a lot of people will be certain they have a condition they do not have. Which is very disrespectful.
Again, it’s a great thing so much information is available to all of us, it’s a great thing that people who are suffering find the information they need to get help. But supporting self-diagnosis invalidates decades of medical professionals. Are they always right? No. Do they have all the answers? No. Can professionals make mistakes? Yes. So if you know all that, how can you assume you are making the right diagnosis? Arrogance, that’s how.
Which is very disrespectful
I don’t se how.
But supporting self-diagnosis invalidates decades of medical professionals
Self diagnosis based on tests developed in validated scientific research invalidates the medical professionals? How?
So if you know all that, how can you assume you are making the right diagnosis?
Who said that? Valid doesn’t mean right. Valid means that, given the actual status of medical care, this is the best a lot of people can do. Valid means that people self-diagnosed can make decision based on their understanding of themselves.
Valid self- diagnosis doesn’t mean that professional diagnoses is not valid or not important. This is your asusmption
Which is very disrespectful
I don’t se how
I literally can’t have a conversation with someone so blatantly disrespectful, good luck.
I’m sorry about that, i really want to understand you.
let me make a very practical example.
Let’s say that I’m a 40 year old male. I always knew there was something different about me. Strong logic, STEM phd. Very weak communication skills (outside of my fields of interests, at least), usually silent. Somehow and with a lot of difficulties I found a partner, who, after several years, suggested that I may have some serious communication/relation issues. I found some random video on youtube like “10 traits you may be autistic”. Oh gosh, I got all 10. Oh look, there are these self-tests I could try. Are they just trash? Let’s dig a bit. Uhm, no, apparently they are research backed, and people use them to do actual self assesment. Ok, I’m pretty sure they will exclude me. Oh gosh, i’m in the 90 percentile of diagnosed autistic people on all of them. What do I do? Seek for actual diagnosis. Ok, apparently it takes years, and it costs a lot. Ok, let’s do some research. I read about 10 books, like the one from Atwood, neuro-tribes, etc. I joned a lot of online groups like this one, finding a lot of pepole with issues like mine. I learned a lot. I understood why if I’m out for dinner with more than 6 friends I cannot follow conversations. Why if the environment is loud I feel exhausted after 10 miniutes. Why I had issues with bullies when I was young. The bad hand-writing. The sensitivity for food textures. Why I cannot bear wool on my skin. Why I need to carefully plan the routes when I’m moving. Why I have anxiety when stupid weekend plans are changed (EDIT: ah the anxiety with everything!). Why my wife thinks that my questions during fights are stupid while I cannot even understand what’s happening without an answer. And a lot of other things, really a lot. And things got better. Now I don’t blame myself if I cannot bear certain situations. I just know I have to take a break from social mettings and it’s ok to do that. I carry some era plugs to go to the grocery store that help me cope with the noise that would exhaust me etc.
So, if you could get to the end of the above wall of text, my question is: how is any of this disrespectful? Towards who? You? The doctors? Why cannot I qualify as a self-diagnosed autustic and share my experiences like one? What a medical diagnose would add at this point, where I don’t need any additional accomodation? If I was still a child, that would have helped. But now?
Okay fine, the problem with self-diagnosis goes further than personal experience. It is about how much value you put on a medical diagnosis and having respect for the medical field for figuring out what constitutes that diagnosis. Autism specifically is a very broad condition, with even the medical field disagreeing on what puts you on the spectrum. But even they will argue the importance of a medical evaluation, which by definition has changed over time, and will change, so I’m not talking about giving anyone a stamp, but rather respecting professionals who dedicate lifetimes to their research by not using terms which they work so hard to define.
A lot of people who have autism aren’t diagnosed properly, which is genuinely infuriating. Which is why there is so much value in spreading information which could help anyone, especially for people who don’t have the resources. But that information could apply to anyone or anything, and because of the broad nature of autism there aren’t any “10 signs which show you have autism”, because there are people who will actually find themselves having those 10 signs who do not have any neurodivergence of any kind. But that person will still find value in what those 10 signs tell about them and about how other people deal with that.
You have found value in every aspect of what it means to have autism, you have used those resources to help youself in ways you didn’t know was possible. That is genuinely heartwarming, and I am not here to tell you you are wrong. What I’m saying is there are a lot of people suffering but also working on bettering the lives of everyone with autism, and self-diagnosing devalues both of those people.
If I were you, I think I would describe myself as having similar personality traits as a person with autism. But not actually having autism.
If I were you, I think I would describe myself as having similar personality traits as a person with autism. But not actually having autism.
I have to admit that in this particular thread I am exaggerating on purpose, to get to a point. I usually say (at least online… Offline it’s still undisclosed) that I have strong indication that I may be autistic, and that I ran the tests, and found similarities etc (similar to what you suggested). And all this mainly because, even if I suffered a lot in some phases in my life (bullying, loneliness and isolation, failure in relationships anxiety, depending on the age mainly), in the end I didn’t need assistance until now (this is debatable: maybe I need it? Sometimes it’s really hard)
The thing is, even if I don’t define myself as self-diagnosed autistic, I wouldn’t mind if someone in a similar situation would do it, if he/she really thinks it fits, especially if he experienced a lot of suffering in life because of it, and that definition would help improving his/her life.
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Which is a trait of whaaaat diagnosis?
This one got me rolling 🤣🤣🤣
Yesterday, I talked with my psychiatrist about a possible autism diagnosis. We reached a conclusion that even though they don’t think I qualify for an autism diagnosis, it’s possible that once I get ADHD in check, which is much more prevalent, autism symptoms are going to be more visible and we can re-evaluate then. Also, we agreed that diagnosis or not, trying to find accommodations for my needs is a net positive.
It’s not the best possible outcome, nor do I think the doctor is properly equipped to recognise autistic people. But, I appreciate them being open minded. I am not going to doubt my self diagnosis, it provides me with (1) motivation to keep on researching and (2) a framework to think things through. Ultimately, I may be wrong, but I don’t think it matters right now.
Lol, no. Only because a guy did a well put together video it doesn’t make it a valid argument. That’s just fucking dumb and wrong. Self-diagnosis might be good for you to get interested on the subject and then get a professional take, but that it’s it.
“Doctors make wrong diagnosis all the time”
Killing and stealing are still illegal even if there are people who don’t obey the rules.
Self-diagnosis might be good for you to get interested on the subject and then get a professional take, but that it’s it.
and what if you can’t get it?
Killing and stealing are still illegal even if there are people who don’t obey the rules.
I miss the relevance of this sentence here. Can you elaborate?
If you can’t get it you can’t get it, it’s that simple. Some people can’t get any medical assistance at all, and that’s a whole other discussion.
OK, that sentence you mentioned was weird. What I meant was, the fact that doctors make mistakes don’t make doctors optional. There are legislations and standards for a reason. This argument is silly bacause it can be used for almost anything. Like, why have cops if people keep commiting crimes anyway?
What I meant was, the fact that doctors make mistakes don’t make doctors optional
honestly neither I, nor the author video said that.
The topic (of this thread and of the video) is “is self-diagnosis valid?”
To which I would answer: it depends, valid for what?
- valid for legal accomodation on the workplace/school whatever? To this I would say no
- valid for national health system treatment? Again, no
- valid to have a label for others, to share experiences, to discuss, etc? Hell yes
What do you think about this? Where do you see dangers? Why would you need official medical validation, if you don’t need any official treatment/help?
If it’s not valid for legal or health matters how is that valid? Now you are just playing with the meaning of the word.
Self-diagnosing yourself with autism just because of some unusual behaviors is disrespectful to people who really struggle with the condition.
If you don’t need treatments or special needs why would you feel the need to be in the same category with people who suffer severe impairment in socialization and everyday activities?
Find something else to define your own uniqueness, that’s a serious subject.
Self-diagnosing yourself with autism just because of some unusual behaviour
What do you know about the suffering of people who self-diagnose? You are being disrespectful, and arrogant by stating something you don’t know.
If you don’t need treatments or special needs why would you feel the need to be in the same category with people who suffer severe impairment in socialization and everyday activities?
There is a lot of people who got officially diagnosed with autism at a later age, and didn’t need any accommodation of treatment. One typical case is when people get diagnosis after their kids get a dianosis. What do you know about their past? How you know they didn’t suffer their condition? Maybe they learned to get around the obstacles with a lot of effort and suffering.
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You clearly don’t know shit about autism and mental health
I hope you are a qualified doctor. For sure you write a lot about respect, but “you don’t know a shit” about it.
You seem to completely ignore the social aspect. If I spend my whole life an outcast, a weirdo, struggling with social cues, struggling to make friends, overwhelmed by stimuli, I might start to think I’m broken, or personally responsible for my faults.
Autism explains that well and takes away the blame, as well as being a good summary to others AND a label with which I can find others like me and share/relate to experiences.
Even if I don’t meet the medical definition, I don’t care, because it’s been such a useful lens and community for me learning about myself.
Social aspect ?! LMAO ! It’s an identified mental disorder, not a social group like being emo or goth. You do need to meet a medical definition, please go see a therapist.
You…. Do realize that many symptoms of autism directly and negatively impact social interactions, right? Because that’s what they were saying, and it’s pretty damn clear in context if you have even the slightest awareness of autism. They were not arguing/supporting this straw man you created to attack. That’s just you taking shit out of context and twisting it to make yourself feel right. Poor form.
You sound like a language prescriptivist, you should look into descriptivism.
Yeah i agree and furthermore don’t see why people shit their plants at the thought of someone self-diagnosing in a serious way
The problem I have with self diagnosis is that it is only mostly right. Indeed you are the best to realise something is different with you. However knowing exactly what it is is a whole new level. Thing is you may be right in detecting something is wrong, but self-diagnose with something similar but different than what you have. And that can impact the solution and help you will look for.
I can very easily self diagnose my flu, i know when I likely have a flu. Though I still go to the doctor because it could be something different like a bronchitis
I think your argument is totally reasonable.
I think your comparison fits, too, but not all flues are the same: for the ones that are light you can handle them with self medication (paracetamol for the fever mainly), and/or you can wait to see if in a few days the symptoms get better or worse, and then you contact a doctor. Does it make sense?
and if it get worsewhat do you do ? Yep you go to the doctor. I’ve never said self diagnosis is a devilish act, it is extremely useful to know wether an assessment could be interesting. Now I’d go further about self medicating a flue. Generally people will call that : “a cold”. A generic, non-scientific term. By treating the fever you are not treating the flu but the symptoms, you don’t actually know wether it’s the flu. Lastly, if the “flu” don’t go away, you are going to need a more specific treatment, and therefore go to the doctor because the treatment you need is very specific to the disease you actually have. Same applies for any kind of autism, if you need specific care, technique to manage your emotions or things like that, you are going to need to know what is your actual diagnosis and a doctor expertise to help you in finding the right strategies.
if you need specific care, technique to manage your emotions or things like that, you are going to need to know what is your actual diagnosis and a doctor expertise to help you in finding the right strategies.
Agreed
I think this is what defines the validity and boundaries of self-diagnosis.
EDIT: one additional thing: availability of specific care and medical diagnosis force the boudaries a bit out.
The weirdest thing about this discourse is that people against it somehow seem to be very convinced self diagnosis is exclusively done based on internet memes or something along those lines. I spend years researching, reading multiple books by actual experts, reading scientific publications and hanging out in autism spaces to see if I fit in.
… Almost like somebody who tends to … Oh idk have a special interest.
And the contra side also dismisses privilege. It’s known that autism is under diagnosed in minorities. And things like I’d need to travel 5 hours (one way) multiple times to get a diagnosis. Potentially staying overnight. They’d want to talk to my abusive parents. I’m chronically ill. It’s not realistic and I live in a country that has reasonable health care. I wouldn’t magically be employable afterwards anyway or have some other tangible benefit. I’d just get somebody in a 15 € white coat tell me what I already know. Or dismiss me because they read me as the wrong gender and yolo autistic people don’t have humor.
this is a helpful video. I guess I’ll be looking at some online assessments this afternoon
