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What is everyone’s thoughts on self-diagnosis?

Greatshield17

An Appeal to Heaven!
V.I.P Member
This has been a huge controversy in the Autistic Community for some time, people self-diagnosing as Autistic. I personally have a lot of mixed feelings about this, on the one hand, I kind of prefer diagnosis be official and done by professionals; but on the other hand, I’ve stated many time on here that I have, and am continuing to, print-out diagnostic material for my future children, on the off chance that the Autism-deniers have their way and succeed in redefining all Autism as level-3 Autism. On top of that, if someone came up to me and told that they’re level-1 Autistic, I’d give them plenty of a benefit of a doubt; and if they showed me their AQ score, I’d all but be convinced that they’re Autistic.

On top of all that, I’ve heard accounts that official diagnosis has unintentionally or intentionally become really difficult and slow, I’m not sure how accurate those accounts are.

What are your thoughts and knowledge on this?
 
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Progster

Gone sideways to the sun
V.I.P Member
I don't have any issue with people diagnosing themselves if they do their research and rule out other possible diagnoses. There are a lot of people born at a time where only the more severe cases were officially diagnosed, who then realise that they are on the spectrum, but for one reason or another don't seek the confirmation of a clinician.

Also, you either are autistic or you aren't, and being diagnosed officially isn't some on or off switch for autism that only gets switched on when you are diagnosed. So before a person is a diagnosed autistic person, they are an undiagnosed autistic person, or a self-diagnosed autistic person, but still an autistic person.
 

Silhouette Mirage

[None]
V.I.P Member
If they're being genuine about it, I think self-diagnosis is a wonderful tool. "I seem to fit inside of this box" is really just a slight shade off from, "A professional tells me I fit inside of this box", even though consulting a professional and ruling out other causes is typically a good idea for a number of reasons.

Nobody likes to talk about it, but honestly, if you push hard enough, you can get an official diagnosis for almost anything. If I told you all of the official diagnoses I've actually had in my life, you'd think I was kidding. Go to any specialist and they'll surely fit you in for the right price. For people like me, it just boils down to common sense and finding the closest box, because at the end of the day we're basically a bunch of humans with problems we need to iron out.

I can also see why people would disagree, though. There's a dark side to everything.
 
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Outdated

Well-Known Member
For years I told people I had Asperger's, when I finally got a diagnosis they ranked me as level 2 and tried to get me to accept visits from social workers.
 

Ken

Well-Known Member
V.I.P Member
I tend to not trust "official professionals" with absolute authority. I lost that trust years ago due to my experiences in my own career. I became an electronics design engineer due to performing design projects on my own while employed as a electronics technician tasked with building prototypes for the engineers. I would often suggest design corrections in my work. Initially, my suggestions were resented and scoffed at, but eventually, after seeing they always worked, I was always consulted before the designs went to prototype. I then started presenting my free-time designs. I was then promoted to senior design engineer. My boss really liked my innovation - which was due to my autism.

My point is that I was never able to get a college degree due to my stifling social anxiety. In any event, all of the other engineers at the firm held esteemed degrees from esteemed colleges, which made them esteemed authorities. However, to my astonishment I found that none of them was proficient in basic electronics theory. One time as one was asking me questions about the physics of their design, I asked, "wasn't that taught in your college?" Their reply was that it was not taught to that degree.

With that, I realize that an official professional authority is just another person who jumped through the necessarily hoops to acquire a degree- and that a degree does not guarantee any extent of their knowledge.

Personally, I do not believe anyone can be more qualified to diagnose autism more than the person themself. An official professional only knows about the submitted information about an individual and spends some number of hours reviewing the information. The individual, however, has lived with themself and their autism for their entire life - 24/7. Years, not hours. It's not that hard for anyone to study the details of autism and to know if that matches their person or not.

If you happen to fall down and suffer extreme pain and notice that your leg is bent half-way between your ankle and knee, you really don't need any official diagnosis that you have a broken leg.

I think it is unfortunate that the medical health care system only relies on official professionals.
 

Gerald Wilgus

Well-Known Member
V.I.P Member
I don't have any issue with people diagnosing themselves if they do their research and rule out other possible diagnoses. There are a lot of people born at a time where only the more severe cases were officially diagnosed, who then realise that they are on the spectrum, but for one reason or another don't seek the confirmation of a clinician.

Also, you either are autistic or you aren't, and being diagnosed officially isn't some on or off switch for autism that only gets switched on when you are diagnosed. So before a person is a diagnosed autistic person, they are an undiagnosed autistic person, or a self-diagnosed autistic person, but still an autistic person.
I first did a self diagnosis as my spouse thought that many of my behaviors were autistic. Then I sought and received a formal diagnosis. I am one of those people @Progster alludes to. Diagnosis as a teen and young adult without the social counseling that I needed would have been useless.
 

Qoyote

Well-Known Member
The internet acts like there's this faker epidemic and it's this huge issue and I just do not care.

(Older members, a lot of this might not mean anything to you cause you don't hang out around always-online teens. You're smarter than me. ;))

1. We aren't all Autism Representatives. It's always this thing of "what if someone reads something you posted 2 years ago and gets the wrong idea about autism" like we're all public figures. If we're wrong about our private lives, we're wrong. Finding yourself is confusing, especially when your brain works different. Not a big deal.

2. Teens are stupid, especially early teens. They will do stupid things. The internet thinks they can stop that, I used to think I could stop myself. Nope. Law of the world. Teens self-diagnosing when they definitely aren't autistic is just one more form of something that's always been there and always will be. Teens have way too much influence online but that's a separate issue.

3. How many of these people even are there? No one ever gives any specific examples. Maybe there's more on Twitter/Tiktok/whatever but anyone who gets their prejudices from there has problems no matter what.

4. This is a more specific one I've found but just cause you look good on camera in a video you scripted yourself and did 5 takes for doesn't mean you can do that in real life. Many people can look/sound WAY better on video than normal. People will actually call you a faker for that, especially if you're a hot woman cause so many guys have this "autism vs girls" mentality and "hot girl is one of us" does not compute.

5. "They're ruining our optics". With who, people who are already prejudiced against us anyway? Please. Those people will find something we're doing wrong no matter what. Prejudice isn't based on logic. I'm from the US and every group in this country's history has tried fighting prejudice with logic and it has NEVER WORKED.

I have a bone to pick with the optics thing. I've felt unwelcome in so many forums because "people like me" would hurt their optics and erase this goodwill they've built up with... people who are still prejudiced against them. Yeah, great relations there. They really snubbed you for the peace prize.
 

Gerald Wilgus

Well-Known Member
V.I.P Member
I tend to not trust "official professionals" with absolute authority. I lost that trust years ago due to my experiences in my own career. I became an electronics design engineer due to performing design projects on my own while employed as a electronics technician tasked with building prototypes for the engineers. I would often suggest design corrections in my work. Initially, my suggestions were resented and scoffed at, but eventually, after seeing they always worked, I was always consulted before the designs went to prototype. I then started presenting my free-time designs. I was then promoted to senior design engineer. My boss really liked my innovation - which was due to my autism.

My point is that I was never able to get a college degree due to my stifling social anxiety. In any event, all of the other engineers at the firm held esteemed degrees from esteemed colleges, which made them esteemed authorities. However, to my astonishment I found that none of them was proficient in basic electronics theory. One time as one was asking me questions about the physics of their design, I asked, "wasn't that taught in your college?" Their reply was that it was not taught to that degree.

With that, I realize that an official professional authority is just another person who jumped through the necessarily hoops to acquire a degree- and that a degree does not guarantee any extent of their knowledge.

Personally, I do not believe anyone can be more qualified to diagnose autism more than the person themself. An official professional only knows about the submitted information about an individual and spends some number of hours reviewing the information. The individual, however, has lived with themself and their autism for their entire life - 24/7. Years, not hours. It's not that hard for anyone to study the details of autism and to know if that matches their person or not.

If you happen to fall down and suffer extreme pain and notice that your leg is bent half-way between your ankle and knee, you really don't need any official diagnosis that you have a broken leg.

I think it is unfortunate that the medical health care system only relies on official professionals.
One only needs to see the woo-woo about health, especially in cancer therapy, promoted by blatant frauds, to see why medical licensing is the barest of confirmation that some proficiency in training is achieved. We should always question authority when we have the knowledge to understand issues. But much damage is done by the gullible in biased echo chambers. The anti-vaxxers glomming onto the fraud of Andrew Wakefield. From my training in Medical Microbiology (and a TA to medical students for a time) I am scandalized by the misuse of antibiotics in medical care, but especially in agriculture. I do not expect people seeking medical care to be able to understand therapies and options as I do. So for many a physicians accreditation is all they have. What would you have people rely on?
 

tree

Blue/Green
Staff member
V.I.P Member









 

Au Naturel

Au Naturel
Diagnosis is a funny thing. Two mental health professionals can look at the same person and one will diagnose autism and the other will not. The folks who write the DSM series of manuals like to pretend that they are being precise and scientific when everything is still fundamentally one person's opinion of another. The number of diagnoses of various disorders varies with what is fashionable. Entire categories, like homosexuality, can simply disappear from the manual when the winds of social change blow. Other times they slap a new name onto an old diagnosis because the old name became controversial. Or they lump things together that used to be separate diagnoses purely for convenience.

None of these things mean anything scientific happened. It's often politics or convenience or changing social customs.

I guess a self-diagnosis is just as valid if you have the honesty to step out of yourself, objectively evaluate your traits, do the research in the professional literature and accept whatever conclusions it supports. That's rare. We are full of "That doesn't count for me." And full of subjectively interpreting traits to match or not match.

And there are a massive number of people who see a disorder described and immediately see it in themselves, whether it is there or not. Personal biases go both ways.

I'd make it a priority to see a qualified professional. Someone who can look at you from the outside, with no preconceptions and no dog in the fight, who really doesn't care if you are autistic or not. If they disagree with your self-diagnosis, ask them why.
 

phantom

Well-Known Member
I tend to not trust "official professionals" with absolute authority. I lost that trust years ago due to my experiences in my own career. I became an electronics design engineer due to performing design projects on my own while employed as a electronics technician tasked with building prototypes for the engineers. I would often suggest design corrections in my work. Initially, my suggestions were resented and scoffed at, but eventually, after seeing they always worked, I was always consulted before the designs went to prototype. I then started presenting my free-time designs. I was then promoted to senior design engineer. My boss really liked my innovation - which was due to my autism.

My point is that I was never able to get a college degree due to my stifling social anxiety. In any event, all of the other engineers at the firm held esteemed degrees from esteemed colleges, which made them esteemed authorities. However, to my astonishment I found that none of them was proficient in basic electronics theory. One time as one was asking me questions about the physics of their design, I asked, "wasn't that taught in your college?" Their reply was that it was not taught to that degree.

With that, I realize that an official professional authority is just another person who jumped through the necessarily hoops to acquire a degree- and that a degree does not guarantee any extent of their knowledge.

Personally, I do not believe anyone can be more qualified to diagnose autism more than the person themself. An official professional only knows about the submitted information about an individual and spends some number of hours reviewing the information. The individual, however, has lived with themself and their autism for their entire life - 24/7. Years, not hours. It's not that hard for anyone to study the details of autism and to know if that matches their person or not.

If you happen to fall down and suffer extreme pain and notice that your leg is bent half-way between your ankle and knee, you really don't need any official diagnosis that you have a broken leg.

I think it is unfortunate that the medical health care system only relies on official professionals.
I study electrical engineering, didn't know there were other people on this forum with that interest.
 

Raggamuffin

Well-Known Member
V.I.P Member
Not everyone can afford or obtain an assessment. And some people might still fly under the radar and not be officially diagnosed. It doesn't mean they're not neurodiverse. There's a lot of ND conditions, and a lot of overlap. We shouldn't concern ourselves on who is officially or self-diagnosed.

We should simply welcome anyone wishing to be part of a community of people who struggle.

Ed
 

Atrapa Almas

70% INTJ + 30% ASPIE = 100% HUMAN
V.I.P Member
I know that many people view on the matter is that you are autistic or you are not. But then those same people say that autism is an spectrum...

There are people who are NT with just some autistic traits, they are in the NT part of the spectrum. There are people who have enougth autistic traits to be diagnosed on the spectrum by some proffesionals but not by others ("oh you can look at the eyes and have a nice work). The further we go into having traits the more they turn into "symtoms" and the more it looks like a disorder intead of a condition. Those people are the ones that are "clearly" in the spectrum.

The usefullness of a diagnose is clear in those who can benefit from it, therapy and social help as an example. For those who are older and already solved their lifes, the diagnose may means more a self-relief or a personal experience and still be usefull. For others it may be not worth it for whatever reason.

To me (personal oppinion), self diagnose its ok for those who are in the mild part of the spectrum. Because if we fail in our self diagnose there is no big downside. No medication involved.

For those who may need specific therapy, medication and the like, it may become costy to think they are ASD when they could have some other condition, specially if that other condition was to be helped with an specific medication. Then the self diagnose would become a mistake.

Hope it helps.
 

Crossbreed

Neur-D Missionary ☝️
V.I.P Member
If autism coping strategies help a person, self-diagnosis is useful, but you cannot access some services without an official diagnosis.
 

Gerontius

Well-Known Member
V.I.P Member
"Bro, I'm disabled."
"Not without a slip of paper you're not!"
See how silly that sounds? For the record, I was officially diagnosed, but I think for those of honest disposition who do not want to "fake" autism for notoriety on line, there is nothing wrong with self-diagnosis. It is a medical equivalent of an examination of conscience.
 

Nitro

Admin/Immoral Turpitude
Staff member
Admin
V.I.P Member
On another thread during the beginnings of my time here, it was pointed out to me that both ways are highly capable of coming up with either the right or wrong assessment due to the subjectivity of it all.

In the end, it still all comes down to nothing more than an opinion ;)
 

Luca

charm & chaos
V.I.P Member
"Bro, I'm disabled."
"Not without a slip of paper you're not!"
See how silly that sounds? For the record, I was officially diagnosed, but I think for those of honest disposition who do not want to "fake" autism for notoriety on line, there is nothing wrong with self-diagnosis. It is a medical equivalent of an examination of conscience.
This is something that really makes me angry that happened to me all the time, especially when I was a bit younger and in school settings or other peer settings. I don't bring up my medical diagnoses anymore because of it.
Like I would mention some of the conditions I have and people would be like "Where's your proof?" I was just so taken aback. Like do people really fake medical conditions to the extent that there needs to be so much gatekeeping about it?
Same issue with service dogs, which I've posted a lot about on here. Sure, there are some assholes with fake service dogs, but it's not enough of an epidemic that everyone needs to assume EVERY service dog is fake.
I blame tiktok, I think it is bringing out the absolute worst of Gen Z and younger millenials.
 

Suzanne

Well-Known Member
V.I.P Member
Since I came here as a self diagnosed aspie, I can say that it is not a controversal subject to me, but I will always urge a formal diagnosis, since it truly does calm the brain and now I say it with confidence and no one questions me because of that confidence.

I was diagnosed with grade 2 going towards 3 and asked to not know my IQ
 

Ken

Well-Known Member
V.I.P Member
One only needs to see the woo-woo about health, especially in cancer therapy, promoted by blatant frauds, to see why medical licensing is the barest of confirmation that some proficiency in training is achieved. We should always question authority when we have the knowledge to understand issues. But much damage is done by the gullible in biased echo chambers. The anti-vaxxers glomming onto the fraud of Andrew Wakefield. From my training in Medical Microbiology (and a TA to medical students for a time) I am scandalized by the misuse of antibiotics in medical care, but especially in agriculture. I do not expect people seeking medical care to be able to understand therapies and options as I do. So for many a physicians accreditation is all they have. What would you have people rely on?
What would I have people rely on? The best they have available to them. I do not mean to dismiss everyone with a college degree. I am simply saying that a degree does not automatically guarantee the holder is an all knowing authority above all others. I do know some very good medical professionals and some very bad ones. It is just not a concrete, black or white subject.

I self diagnosed and that is good enough for me. I was never diagnosed as a child, where help would have been great, however in my time and place any "treatment" or "help" would have been detrimental. Yes, my life was hell, but if "treated" or "helped" with the diagnosis of autism would have ruined my life. Actually, the term autism was not know in my time or region. I was, however, diagnosed as retarded.
 

Darkkin

Lioness of Spoons
V.I.P Member
The vast majority of folks who self diagnose are looking for answers and context to why they act and feel as they do. They aren't looking for a documented excuse for poor or outrageous behaviour. Monetary fraud associated with faking a diagnosis of ASD1 are almost laughably small in the US.

Those who do decide to self diagnose and portray 'autism' also usually aren't bringing just an ASD1 diagnosis to the table, usually there is an entire legion of additional and c-ooccuring conditions, e.g. fibromyalgia, anxiety, deprssion, EDS, gastrointestinal involvement, etc.

It is often just one label in a litany of issues and with someone bent on faking illness is probably one of the least impactful borrowed labels and is an indicator of a much more significant psychological illness. Munchausen's.

ASD is one of the less overt and subtly impactful conditions. How many of us went through a number of years labelled as 'quirky'?

Yes, there are people who will self diagnose for subversive reasons, but they are going to be a minority of a legitimate contingent who for various reasons cannot acquire a diagnosis.

In terms of long range benefits of context and comprehension, the few bogeys out there should not be allowed to invalidate those who self diagnose in a reality that seeks to chronically invalidate everything. Understanding who you are as an individual because of an ND can be life changing, that you aren't alone on an alien planet.

There is a decided difference between reasonable self diagnosis and people who are claiming they 'might' be autistic. The big difference is in the understanding of what autism entails. Most SDer will have done a decent amount of homework and self reflection, these things come through clearly in a poster's cotext. Unlike the 'baiter' we had the other day who was simply trolling the forum.
 
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