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How do we feel about self-diagnosis?
I have a medical diagnosis and I support self-diagnosis 38%  38%  [ 17 ]
I have a medical diagnosis and I do NOT support self-diagnosis 31%  31%  [ 14 ]
I am self-diagnosed and I support self-diagnosis 29%  29%  [ 13 ]
I am self-diagnosed but I feel like if someone is self-diagnosed they should get a medical diagnosis 2%  2%  [ 1 ]
Total votes : 45

Whale_Tuune
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01 Jun 2020, 10:55 am

It can vary, you can have bad professionals out there. But as a whole, I don't automatically trust anyone who says that they have self diagnosed Autism.


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01 Jun 2020, 10:56 am

Whale_Tuune wrote:
It can vary, you can have bad professionals out there. But as a whole, I don't automatically trust anyone who says that they have self-diagnosed Autism.
Same, and for reasons previously stated.



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01 Jun 2020, 2:23 pm

starkid wrote:


In addition, "self-diagnosis" offer precisely zero of the benefits provided by a real diagnosis. That fact suggests an ulterior motivation for self-diagnoses of autism. And that is a major reason why self-diagnoses ought not to be trusted: unknown but likely bias.
I disagree. I was only able to get my official diagnosis by a stroke of God's hand. I don't say luck because too many unrelated factors fell into place to be luck. But if those factors had not fallen into place, there is no way at all that I could have ever gotten an official diagnosis. There is simply now way that I could have come up with the money out of pocket for one. An official adult diagnosis can cost thousands of dollars.

I had very successfully and accurately self diagnosed almost a year before I was able to get my official diagnosis. The benefits I got from doing that were tremendous. Not only the emotional and psychological benefits but self diagnosing was able to get me into the organizations that eventually led me to be able to get my official diagnosis.

And when you talk about ulterior motives, I don't understand what you mean. I spent 45 years of my of life struggling to no end and suffering in incredible ways without ever understanding why. What kind of ulterior motive could someone like me have? I finally found out what what causing all the issues that I had had my entire life. For the first time ever, my life made some kind of sense and all the suicidal moments that I regularly went through for 35 years finally had some kind of way for me to understand them. Is that not reason enough? Now I understand that only an official diagnosis is official but even sometimes they are not 100% accurate. But for people who do not have the financial means to get a diagnosis, or who do not have access to one, I think it is not right to tell them that they should not self diagnose. If you are truly Autistic, you have the ability to research in a way that you can analyze and understand what is going on. And most of us are extremely self aware. I believe that most of us are perfectly capable of self diagnosing accurately. Now you can't use that in an official capacity but that is ok. If you research well enough and you are self aware, it's pretty simple. And even if you eventually realize that what you have is something that mimics Autism, I don't see any problem with that either. What does it hurt for people to have some kind of explanation for what they have been living through? And even if it does not allow them to have government services, at least it can give them some peace of mind and some understanding of what is happening to them. Is that so bad?


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01 Jun 2020, 2:26 pm

firemonkey wrote:
Of course an official dx trumps self diagnosis , but I have little time for anyone born when it was much easier to get an early dx criticising older people for self diagnosing .
Agreed!


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01 Jun 2020, 2:28 pm

MrsPeel wrote:
As a late-diagnosed woman, I have sympathy for other mature women who strongly suspect themselves to be autistic but have not been able to get a diagnosis because their behaviour/presentation is too dissimilar to that of autistic children or males, upon whom the diagnostic criteria were typically based. I feel myself very fortunate in having found an autism specialist who knew enough to diagnose me, and have no problem with those less fortunate identifying as self-diagnosed.
Even if the person self-diagnosing has got it wrong, it's not as if self-diagnosis will gain them any benefit, is it? One needs a formal diagnosis to gain any kind of formal assistance.
But it can certainly help them feel accepted into the autistic tribe, which is priceless in its own way for the lonely and misunderstood probable-autist.
Plus the formal diagnostic process is not exactly fool-proof either, and historically in Aus it varied from place to place and by practitioner. They've tried to standardise it recently, but there are still people floating around with an incorrect autism diagnosis - so even the experts don't always get it right.
While I'd be cautious around a youngster claiming self-diagnosis, a mature adult who knows themselves and their difficulties and has read up about autism is likely to get it right.
Yes to this. 100%


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01 Jun 2020, 2:33 pm

Whale_Tuune wrote:
It can vary, you can have bad professionals out there. But as a whole, I don't automatically trust anyone who says that they have self diagnosed Autism.
I hear what you are saying. My thought on it is, I don't have to trust them. I can respect them and the fact that they believe they are Autistic. But as long as they are not infringing on my life, I can leave it at that. Whether or not someone else thinks he is Autistic or anything else for that matter makes no difference to me if that person is not directly in my life. It has no impact on my life at all. So it really should not matter. Now if that person starts affecting my life directly, it might matter at that point.


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01 Jun 2020, 6:46 pm

firemonkey wrote:
Of course an official dx trumps self diagnosis , but I have little time for anyone born when it was much easier to get an early dx criticising older people for self diagnosing .


Agreed.

I was born in the 60's when getting a diagnosis required low functioning autism by today's standards to be diagnosed. My mother had me tested for autism or turrets when I was 3 years old, and the doctors said I was just lazy. As an adult over 40, doctors aren't going to jump out and say that autism is the cause of all your problems all your life. The only way that a doctor is going to be able to spot it, is if they are trained to diagnose autism, and if you don't have a self diagnosis, how are you going to know to look for a doctor that is properly trained to diagnose autism?


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02 Jun 2020, 5:52 pm

I dont really care. Most important is to realize the way that you are and to realize what's the real difference of you and all other people and to deal with it in the best way you can. Some people seem to want a diagnosis just as an excuse for not even trying to improve or even to behave knowingly a sh*tty way. But not even few people have quite different conditions than Asperger's or autism as well and in such cases the right diagnosis can be really helpful. The same if you need it for getting any required social support. But for me?
Asperger is a special condition but not anything I am. It took me very long to figure out my problems. I learned on myself to do eye contact and to guess the intentions and emotions of other people better. Beside of the problems if it comes to the start relationships to NTs has Asperger's a lot of advantages as well. :mrgreen:


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02 Jun 2020, 7:32 pm

I believe that it's important to get a formal diagnosis as there are other disorders and problems that can mimic autistic traits. People also usually have their own personal bias, plus don't get to view their behaviour from the perspective of someone else, so they could be more inclined to believe something is due to them having autism, while if they were viewed by an actual professional it could be obvious their issues are not from autism. Despite that though, I do understand why there are people who self diagnose, especially if you're an adult. If you're someone who masks quite well it can be even harder to get professionals to take you seriously, and getting a formal diagnosis can be quite expensive, especially if you have to go through the process multiple times for anything to come out of it.

Personally, it took years for anyone to realize that I actually had autism instead of just passing off my problems as ADHD and anxiety, even though I was tested for it as a child, and developed similarly to my brother and have some of the same behaviours he has (he was diagnosed in elementary school). I think I actually still don't have a diagnosis on file, since when I was retested I got referred for therapy to see if I could improve on some of my issues, and after one meeting the woman I saw decided that I didn't "seem autistic" to her and that I probably just picked up the behaviours I have from growing up with my brother. I have not heard my doctor mention anything besides for the ADHD and GAD I was told I also had at the time, so I would assume that was thrown out after that.


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02 Jun 2020, 8:51 pm

skibum wrote:
firemonkey wrote:
Of course an official dx trumps self diagnosis , but I have little time for anyone born when it was much easier to get an early dx criticising older people for self diagnosing .
Agreed!


I agree also. It seems that people born after a diagnosis was even available can't understand that some of us were alive for half a century before that. I perceive that most young critics of self identification, especially those diagnosed in childhood, have very little capacity for theory of mind or empathy for our past decades of experience, but who can put an "old head" on young shoulders?

One day we stumbled on the answer, we recognised ourselves, many of us went on to have that confirmed. I don't recall any older member here who didn't find that a formal diagnosis confirmed their own previous one. No doubt there must be some, just as there are people whose formal diagnosis is a misdiagnosis.

Whatever pathway any member follows to diagnosis should be respected. Be kind - most of us know how deep old wounds about being AS in an NT world go.



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02 Jun 2020, 9:38 pm

B19 wrote:
skibum wrote:
firemonkey wrote:
Of course an official dx trumps self diagnosis , but I have little time for anyone born when it was much easier to get an early dx criticising older people for self diagnosing .
Agreed!


I agree also. It seems that people born after a diagnosis was even available can't understand that some of us were alive for half a century before that. I perceive that most young critics of self identification, especially those diagnosed in childhood, have very little capacity for theory of mind or empathy for our past decades of experience, but who can put an "old head" on young shoulders?

One day we stumbled on the answer, we recognised ourselves, many of us went on to have that confirmed. I don't recall any older member here who didn't find that a formal diagnosis confirmed their own previous one. No doubt there must be some, just as there are people whose formal diagnosis is a misdiagnosis.

Whatever pathway any member follows to diagnosis should be respected. Be kind - most of us know how deep old wounds about being AS in an NT world go.


I’m a young’un who was diagnosed in childhood but fully support self-diagnosis if the person self-diagnosing has done their research. I just don’t like when people who don’t have any more difficulty in life than most people trying to claim they have Asperger’s because they’re a little shy and a little “nerdy” (plus it’s trendy!). That kind of “self-diagnosing” just leads to more misconceptions about those of us who actually do have Asperger’s/autism, particularly when they try to use it as an excuse for being rude, mean, or insensitive. (As one who would probably be diagnosed with level 2 autism by today’s standards, I actually put forth some effort to learn from my mistakes, once I’m aware of them, so I don’t keep making the same mistakes time and again, using it as a consistent excuse for the same behavior doesn’t fly with me.)


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02 Jun 2020, 9:52 pm

I am self diagnosed. A few days ago a link was posted to RDOS so I completed the questionnaire - here is my score:
Your neurodiverse (Aspie) score: 132 of 200
Your neurotypical (non-autistic) score: 75 of 200
You are very likely neurodiverse (Aspie)

I actually thought something was wrong with the results because I feel so much more normal than I used to. I really thought I would no longer test as aspie to this extent.

So I did an experiment and re-answered based on when I was 20 years old. Here is my score:
Your neurodiverse (Aspie) score: 152 of 200
Your neurotypical (non-autistic) score: 43 of 200
You are very likely neurodiverse (Aspie)
Communication, Relationship and Social showed some improvement, the other functions barely changed at all.

To me this is proof enough that I am not NT. And that we adjust as we age and find coping skills to fit in better. I've never needed to prove myself to anyone so why start now. I have clarity and explanation (not excuses). In 10 years time I may get a diagnosis - conclusive dx I hope, not open to interpretation. By then more will be known about the brain and autism, and maybe I can get concrete help that isn't subjective.



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03 Jun 2020, 2:24 am

This theme never gets old on WP...

I wonder sometimes if it is just plain discrimination by the "haves" towards the "have nots", or just straight up ageism. I've little time for class based prejudice, in any form, even less for discrimination from someone in a fortunate country towards another person in a poorer or less developed country.

"I have a diagnosis so therefore my voice is more valid than yours, because you dont and are too poor and old and you are less than because you dont have access to services and advocates like I do"

"The gold standards I meet and the services I obtain validate my special snowflake status."
... nothing to do with being fortunate or lucky to be born in a specific location at a specific point in time. Is it entitlement? Worth through accumulation of snowflake points?

I mean discrimination and prejudice is alive and well in many countries, current news as evidence.

Also let's face it, COVID 19 has clarified with evidence that many countries do not value the vulnerable, disabled, elderly or terminally ill... all second class citizens not deserving of actual lived equality, or a chance at life by comparison to a healthy young typically developing person.

What's laughable is that the protected status above is transient, the youth will age, develop additional undiagnosed disabilities and perhaps terminal illnesses too. Do people actually believe they will be protected from reality, by the ethos they have supported to create!

It's not surprising that a culture of prejudice breeds.. prejudice, why do people think they are untouchable by its broad ranging impact?

I read more complaints online (about people posting that they're autistic despite not having impaired functioning) than I could count, but have never seen even one of these counterfeit self diagnosed autistics posting (ie stated non impaired functioning)

As far as I can tell, this seems to happen on modern social media platforms, which I dont partake in, so for me this is a location and generation based issue. Not a WP piece.


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03 Jun 2020, 3:09 am

People who study Dunning-Kruger syndrome think that only 10% of professionals are really competent. I would assume that there is a lot of incompetent self-diagnosis out there as well. Before AS was a thing, we were all mis-diagnosed if we were classified at all. There may be some other condition that still has no name that resembles AS.
However, my own self diagnosis ended a two-decade search for answers in the dysfunctional family area. I finally have more realistic expectations for myself. All my life, I had assumed that EQ and IQ were linked, which was endlessly frustrating.



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03 Jun 2020, 8:22 am

It can never be valid.

Actually, I am more extreme than that, I suspect that a lot of formal diagnosis are not valid either.

As long there's no biological testing for it yet, like brain scan or blood test, then in my option it's still meh. I don't believe much in psychiatry.



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03 Jun 2020, 8:25 am

The_Face_of_Boo wrote:
It can never be valid.

Actually, I am more extreme than that, I suspect that a lot of formal diagnosis are not valid either.

As long there's no biological testing for it yet, like brain scan or blood test, then in my option it's still meh. I don't believe much in psychiatry.

Then how do you know you are autistic?


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