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On Self-Diagnosis (lemmy.dbzer0.com)
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[-] BackOnMyBS@lemmy.world 73 points 2 years ago

From what I've seen, here are some of the arguments against self-diagnosing:

  • Allistic people using autism as an excuse for their behaviors/difficulties, then denying the difficulties that actually autistic people experience and misrepresenting autistic people.
  • Narcissistic and psychopathic people pretending to be autistic to manipulate others, including actually autistic people.
  • Misdiagnosing themselves when their difficulties are actually related to other root causes, such as prolonged childhood abuse.

In the first two arguments, the problem with self-diagnosing is the social impact it has on others, including the autistic community. I can see why some people are against self-diagnosing since it could make their lives harder, especially autistic people. The last one is more about helping the individual properly understand them-self and developing a proper course of action to improve their lives, so it's an argument rooted in care.

I am not entirely against self-diagnosis. However, I think it could be re-phrased to "self-identified" since "diagnosis" is a medical term. It would be like a person saying, "I'm self-diagnosed with depression." That person isn't diagnosed with depression, though they very well may be depressed. It's really just a pedantic issue from my perspective. Regardless, I don't really care one way or the other because I understand what they are saying and think that an actually autistic person self-identifying as autistic is valid enough. Still, while I wont invalidate someone for self-identifying by gatekeeping autism, I tend to be a little cautious at first because of my experiences with people pretending to be autistic. In this case, I think the issue is that some jerks just can't let us have nice things.

[-] obvs@talk.macstack.net 7 points 2 years ago* (last edited 2 years ago)

The term "identified" is used as an insult, particularly when referring to transgender people, to imply that they aren't really correct. I don't think it's appropriate to use that in the context of autism, because many of the people who do believe themselves to be autistic do go on to get professionally diagnosed. I became interested about 20 years ago in the possibility that I may be autistic, as I met all of the criteria, but only recently did I actually get the resources to pay for a diagnosis. It cost me nearly $3500.

The problem is that self-diagnosis IS valid, when it is valid, and is not valid, when it is not valid.

[-] BackOnMyBS@lemmy.world 16 points 2 years ago

The term “identified” is used as an insult, particularly when referring to transgender people,

I haven't heard that before. Is the current progressive trend to avoid using the term "identify" entirely? If so, let's say I was completing an interview, and I needed to ask someone what ethnicity(ies) they identify with, how would I ask that?

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[-] can@sh.itjust.works 14 points 2 years ago

I've never once heard of it used like this. Could you provide an example please? I'm not sure I understand.

[-] obvs@talk.macstack.net 10 points 2 years ago

Bigots commonly insist that trans people use "I identify as" rather than "I am" when the transgender people are giving their gender, because the intention is to deny those people the ability to be seen as their preferred gender and instead give the impression that those people are impostors, implying that "identifying" is more akin to "relating" instead of categorization.

Insisting that an ostensibly autistic person use "self-identified" instead of "self-diagnosed" would have the same effect.

If you want to use a proper word that's not "diagnosed", "self-assessed" would be more accurate.

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[-] SulaymanF@lemmy.world 43 points 2 years ago

Who wrote this rubbish? Doctors aren’t willingly recommending abuse, and most of them refer to specialists.

[-] surewhynotlem@lemmy.world 15 points 2 years ago

Doctors aren’t willingly recommending abuse

Boomer doctors aren't dead yet, and haven't learned anything since the 70s.

But seriously, think about whatever industry you're in. Surely there are the 'old guys' who haven't kept up with the progress, but are still around kind of doing a poor job of things. Not all old people, surely, but a fair number. At least, that's how it is in IT.

[-] snausagesinablanket@lemmy.world 9 points 2 years ago

Boomer doctors aren’t dead yet, and haven’t learned anything since the 70s.

Apparently you have never heard of required CME's.

[-] SulaymanF@lemmy.world 6 points 2 years ago

That still doesn’t mean they recommend “abuse.” Every doctor in the US must renew their medical license every few years and that means taking continuing medical education classes. Nobody is recommending therapy from the 70s anymore.

Also, it’s still vague about what this “abuse” is so it’s hard to debunk a vague accusation.

[-] mikeboltonshair@sh.itjust.works 6 points 2 years ago

Ahh yes old people are dumb and bad, what a highly enlightened take you have there, you spend way too much time online

Anyone who willingly lumps a bunch of people into a one size fits all category tells me all I need to know about that person

[-] optissima@lemmy.world 5 points 2 years ago

Damn, it sounds like you're lumping a bunch of people into a one size fits all category, telling me everything I need to know about you. (I believe that 70% of people are liquid, so that should tell you everything you need to know about me)

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[-] sapient_cogbag@infosec.pub 12 points 2 years ago

ABA is abuse and very commonly recommended to autistic people (or more often, forced on autistic kids by parents).

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[-] Kayel@aussie.zone 10 points 2 years ago

Depends how long ago. There's still an old ped in my city that doesn't believe in autism and ADHD.

[-] SulaymanF@lemmy.world 5 points 2 years ago

If he or she is still licensed, report them to the state medical board. They should be referring people to a psych specialist anyway.

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[-] li10@feddit.uk 40 points 2 years ago

You need a third party to evaluate it.

It’s almost impossible to be truly objective when looking back at your own actions and how you reacted.

My mother has mental health issues which I personally think are due to BPD. She thinks her problem is just that she pulls her hair and feels stressed, and has absolutely no awareness of her other abnormal behaviours.

It’s kind of on the opposite side of self diagnosis but I think it’s still relevant, because ultimately her internal logic makes all of her actions seem normal to her and she can’t view it objectively.

[-] Haui@discuss.tchncs.de 25 points 2 years ago

I‘m a little shocked at the amount of gatekeeping in this community. That was less of a problem on reddit tbh.

We „the autistic community“ have decided that self diagnosis is valid and that is a fact. So lets just not discuss the idea of the boogeyman posing as an autistic person and just accept people.

Thanks and have a great day. :)

[-] steakmeout@aussie.zone 13 points 2 years ago

A posted picture by an individual is not a community collectively deciding.

[-] Haui@discuss.tchncs.de 6 points 2 years ago

I know and I wasn’t specifically addressing that picture but also multiple comments stating that someone might abuse self diagnosis, which to me is just gatekeeping.

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[-] smollittlefrog@lemdro.id 12 points 2 years ago

We „the autistic community“ have decided that self diagnosis is valid

You are not the entire autistic community. Accept that people can have different opinions.

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[-] glassware@lemmy.world 6 points 2 years ago

We „the autistic community“ have decided that self diagnosis is valid and that is a fact.

So true and I recommend anyone who spends time in online autism communities just get involved in IRL autism communities instead. I find online autism communities utterly toxic and full of gatekeeping and hatred for self diagnosis, which no one I've met in person has ever had a problem with.

[-] Haui@discuss.tchncs.de 5 points 2 years ago

Thanks for saying that. I was genuinely baffled that nobody actually came to support this.

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[-] whoisearth@lemmy.ca 5 points 2 years ago

This is so not the case as on reddit and I'm disappointed to hear someone say that. As the father of an L2 child the majority of autistic and "autistic" people online are the exception not the rule. This is why subreddits like spicyautism came around because of the deluge of asshats who don't represent the silent masses of autism minimizing the struggles of life.

I'm sorry if that comes across confrontational but it's the reason why for many, myself included, the main autistic subs became a toxic cesspool of self diagnosed people invalidating real autistic people because they know better.

[-] Haui@discuss.tchncs.de 8 points 2 years ago

It really comes off confrontational. As an autistic adult with an autistic wife I can vouch for the exact opposite. It took me years to get a diagnosis, same for my wife.

We don’t have any resources for autistic adults, doctors don’t know shit about autism in adults and if someone has an abuse trauma, they get institutionalized for that instead of looking at the bigger picture.

I don’t wan to fight you. Your feelings and experiences are valid. Let’s just not try and gatekeep and we‘re on the same page, deal?

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[-] potoo22@programming.dev 24 points 2 years ago

I looked for a diagnosis. Called lots of providers and, in summary, they only providers that could accept me were expensive and lengthy. I don't have light or sound sensitivity (which isn't required) so I don't need accommodations. I don't have trama and have worked through most of my issues so I don't need therapy. There's objectively no benefit to getting a diagnosis for me other than claiming I have ASD. And there's some negatives, especially if traveling abroad. So yeah, with that, I don't want a professional diagnosis. I did lots of research and checked more than enough boxes in the DSM-5 to validate myself. Others' validation isn't worth a couple thousand dollars and hours of consultation over a year.

I was searching for why I am different and found that it had a name and there are other who have similar experiences that I can relate to. That's good enough for me.

I get gatekeeping and that people may be spreading false information or making the community look bad. Call them out then. Otherwise, an educated self-diagnosis isn't harming anyone. Let people be at peace with their sense of self.

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[-] mikeboltonshair@sh.itjust.works 23 points 2 years ago

This is why there is such a trend in misinformation these days, a breakdown of distrust in institutions. I get why there is that distrust.. institutional issues are easy to find in all fields, however that doesn’t stop them from being correct on the whole.

Look at Covid denialism, denying the results of the last election… the loss of peoples ability to believe experts in their fields. Unless people here are actual doctors no one here has the expertise to give a diagnosis. Everyone has become an expert these days and does their own research, reality doesn’t care about your intuitions on this though.

Saying this, you might be right you could be autistic based on your own feelings/observations. That still doesn’t make it a diagnosis.

I saved a pic of an article I was reading, this is a good example of being an expert and being someone that has interest in a subject but not having the training and knowledge to fully understand it, I read this a bunch of times and still don’t actually understand it as I’m sure most people here won’t either.

There is nothing wrong with being sceptical of experts as they can be wrong and wanting second opinions on things however that doesn’t make you an expert because you can google things.

[-] carbon_based@sh.itjust.works 9 points 2 years ago

The example you bring speaks much about your non-understanding of what "self diagnosis" means, imo. Seems you think about it as solely applying academic knowledge. From what i read so far, and from own experience, it is first rather an assessment of self perception as questions arise at some point, such as "why do i feel so alien", or "why am I exhausted seemingly out of nowhere". Only then, one may discover that there is a "spectrum" of traits of which one shares a more-or-less large number. So this is about self-knowledge and discovering that so many difficulties one has are apparently atypical. No one external can do that for you. And frankly, i wouldn't trust a neurotypical person who just goes by the clinical book with "diagnosing" autism in someone who for decades trained "adult".

Btw. I have a degree in Biology, therefore i do understand in principle what the cited abstract is about, and why it may be difficult to accurately map highly repetitive sequences. Of course i have little knowledge in the field of genome sequencing, so the codes therein tell me exactly nothing.

[-] mikeboltonshair@sh.itjust.works 9 points 2 years ago

You have a degree in biology which is exactly what I’m talking about, so you actually do understand things in this field.. you have expertise, training and knowledge in biology as opposed to someone who takes an interest in it and googles/TikTok’s all their information about it

I did say you may feel this way and that’s fine but that doesn’t automatically make you autistic you need a diagnosis otherwise what’s the point of doctors and science?

Simply apply this logic to a physical ailment.. this is a made up scenario for you, recently I have been having continuously bad headaches… okay there is the self discovery/self diagnosis part done perhaps it’s just a headache, now you need to go to a doctor to actually get a diagnosis pretty sure you can’t self diagnose a brain tumour

Something I could diagnose is cars, I was a Mechanic for 17 years, what do you do if your car doesn’t start, yes you can check the internet and look for possible answers, sometimes they are correct too and you can even get the basic idea of why it caused the problem, the difference between me and finding info on the internet is I know why your starter isn’t working I know the difference between a starter contact and a plunger I also know how the starter works when you turn the key, I know how the magnetic field is working I know how it physically makes contact thus giving you a car that starts, and on top of that I also know what else out of the myriad of other things it could be to check if YouTube is wrong and it’s not the starter

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[-] calavera@lemm.ee 22 points 2 years ago

Honestly, memes aside, go look for a professional diagnostic.

Otherwise you are not autistic you think you are autistic

[-] DessertStorms@kbin.social 32 points 2 years ago* (last edited 2 years ago)

A diagnosis doesn't magically turn a switch on, if a person is autistic, they have been all their lives, even if they never get diagnosed. What is this invalidating bullshit?

[-] givesomefucks@lemmy.world 28 points 2 years ago

As someone who worked with the community, there's nothing more annoying than people who are just a little quirky claiming they have some diagnosis.

Usually because they just want an excuse to not fit in.

Social skills are skills.

Very few people are just naturally good at it, most people have to work hard at it. And few groups work harder than people who are actually diagnosed.

It's just a lot of lazy people "diagnose themselves" and want to treat it as a get out of jail card for never working on their social skills. They want as much credit for their no effort result as people who have spent decades trying to improve their social skills to end up at the same place.

Like, just slapping a "diagnosis" on themselves means they don't have to try anymore. Even if they actually have it, being diagnosed means they'd have to actually do something about it. It's way easier to just claim you have it and not do anything about it.

[-] sky@codesink.io 17 points 2 years ago

Happy to to get a formal diagnosis if anyone wants to cash app me $2,500!

My legitimately incredible health insurance doesn't give a shit if I'm autistic despite my doctor and therapist both wanting me screened! Not to mention the ~18 month wait to see the one person that does adult screenings in my state.

[-] Deestan@lemmy.world 16 points 2 years ago

Living in a country that is still on ICD-10 (Autism definitions from the literal 80s), and professionals refusing to test anyone who isn't a child with severe dysfunction: Screw gatekeeping.

Yes, there are people who claim this or that incorrectly, and are really REALLY annoying about it, but don't let those assholes define how you treat people who have spent a lot of time figuring themselves out and need to not feel like a crazy space alien.

[-] creditCrazy@lemmy.world 15 points 2 years ago

"Most doctors recommend abusive therapy to kids and teens" I've experienced that first hand and is the reason why I feel that being diagnosed was the worst thing to happen to me and is the reason why I typically try to hide the fact I'm autistic only ever admit it when I feel absolutely safe

[-] MadgePickles@lemmy.dbzer0.com 6 points 2 years ago

I'm sorry that happened to you

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[-] Ignacio@kbin.social 13 points 2 years ago* (last edited 2 years ago)

To be honest, I didn't even know I had ASD until I got my diagnosis for ADHD, which I didn't know I had either. And now that ADHD is, let's say, under some control, my ASD traits are more evident.

EDIT: I was diagnosed 6 months ago, just for clarification, at 35 years old.

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[-] groucho@lemmy.sdf.org 11 points 2 years ago

an on-record autism diagnosis: can be used to deny you custody of children, to have your kids taken away, to forcibly institutionalize you

Yep. That's why I'm not pursuing one. Also why I'm not looking into transitioning.

[-] princessnorah 11 points 2 years ago

In Australia, our healthcare doesn’t fund diagnosis’ for people over 18. So even if you can find someone that will assess you as an adult, you have to pay out of pocket. I recently (last month) got a diagnosis because I found a psychologist who has a sliding fee scale. I was self-diagnosed for 6 years before that.

[-] uriel238 11 points 2 years ago

I was diagnosed in my late 40s. And yes my wife and I looked it up, and having that diagnosis can only limit the treatment available to me. But the US mental health system is underfunded.

It's also impacted thanks to the epidemic and lockdown of 2020. So, it's going to be hard to be treated in the US unless you have money.

And then the public serving mental health system is connected to our penal system and has similar abuse issues. One in three inpatients are abused, either sexually or violently, or are put on tranquilizers by the nurse (collaborating with the house psychiatrist) so you won't be any trouble. If you're committed in a public institution expect to not get any better while you're in. And they'll cover up any harm done.

(For private facilities, do research in advance regarding their rate of incidents. If you can have legal council available to you do so.)

So we have to depend on each other for help. So its imporant that we assume everyone else is here in good faith until there's evidence otherwise. Note a lot of us are not good with interpersonal discourse. A lot of us instinctively mask for fear of harm and persecution — a concern in the US, UK, Canada and elsewhere as the rising transnational white power movement gains momentum and expands its list of undesirables.

[-] Lhianna@feddit.de 7 points 2 years ago

I still don't understand why so many people are against self-diagnosis. Someone is suffering and trying to find help, a lot of people, especially minorities and women, can't find it professionally. What's wrong with those people looking for help themselves? Having a word for what is different with you helps finding this help.

I'm not talking about people claiming to be autistic and demanding attention and accomodations, that's a whole different story but trying to keep people from finding help themselves seems to be very wrong to me.

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[-] Kyoyeou@slrpnk.net 5 points 2 years ago

Well I am feeling more lost again with this post. Discovered 4 months ago Asperger Syndrom from someone that had it talking about it online and I found their words surprisingly near me. Went on a trip online curious and read about it, felt more lost because not everything written is present but a lot is there. Decided to look on Reddit. Did the Raads-r test seriously, got a 131. But papers online say it's effective but finds some false positives. So I did the Clinical Partners Adult Autism Test and the results where strongly positive. Did the recommended Aspi-Quiz, and I got a 150 on 200 for broader autism. I'll be moving very very soon and taking rendez-vous with a specialist would take too long, so I am in a grey zones. Posts like that make me feel like maybe I could get an answer, and maybe learn more about myself, even if it's a "Well no you are not, you are just simply different" or a "Here, there is a word for what you feel you are living, go learn about it". But reading comments remind me simply I'm just there floating in ignorance for now, and a bit feeling lost about how I work, or think I work

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this post was submitted on 05 Sep 2023
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