What does Diagnosis *Really* Mean? [sorry, slight rant]

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I cannot say in any absolute sense but i can offer my own anecdotal experience and my perspective on it and you may weigh it in when you feel it is time to come to your own informed conclusion on the issue. this is what i would do.

I went through many weeks of tests and did not know what was being tested for. According to my psychologist who is a highly trained autism specialist it is much harder to trust the results of a test if the subject is aware of what they are being tested for/ This makes perfect sense really, bias is a huge issue. All anyone really has to do to make you think something is true...is agree with a bunch of other people that something is true of you and if they hold that perspective long enough...you will probably eventually feel like it is...HOW much greater the bias if you ALREADY think a thing is true? Rather immense.
After the battery of tests, specialists were actually flown in to test me on a number of things and interview me.
I was even asked if I would agree to allow them to publish a paper about my case because apparently i am able to do some things that are not at all normal which I just always assumed everyone else could do. I declined as I had only gone in for testing to begin with due to depression and did not at all want the clinical process derailed from that because it was and is still though slightly less, very very urgent.

Final, I was called in for an appointment to discuss the final diagnosis, and told that I was Autistic, and what that meant in my specific case.

AS far as I know...THAT is a diagnosis. it WAS based on a high probability but it was extremely thorough, and they would not ever have OFFERED any diagnosis if it had not been very very sure. As for what "Autism" is...I think this is VERY open to debate. In now way do i struggle with all the things my specialist thinks I struggle with. They seem BADLY to want there to be some constant of difficulty among people on the spectrum...but I suspect there simply isn't one in many cases. Many things my specialist thinks I will agree with her "Must be Exhausting" are just NOT not for me. YES I am flooded with a massive and constant stream of visual data, yes I am confident it is more than is normal...not no, it is not exhausting for me...for me it is like a sort of garden of Eden of data and I welcome it very nearly with hedonistic zeal.

My point.........the diagnosis is not final. The definition of Autism is not final. it has split before it will split and branch again and again and again. many of us will be re-diagnosed over and over and over.

HOWEVER, because a diagnosis leads to immense self re-examination, and because it may color the individual perception of oneself... non professionals should NEVER self diagnose or accept the diagnosis of a non professional. this can spin off into delusion and my advice on it...my perception of the safe thing to do would be to remain extremely skeptical indefinitely, never to stop questioning anything no matter who tells you you should (unless you have to run from a tiger or something...then don't question it just run...hahaha), always be prepared for anything to change...because it happens, and I THINK...you should just full on refuse to allow anyone to ever tell you what you are and are not...only you decide that and I THINK that is how it has to be for a person to believe they are in empowered to become better in anything.

my....closer to three cents than two.

Don't forget that there is a whole spectrum of autism severity. It is likely that at either end, for the very lowest functioning and very highest functioning autists, we really ought be diagnosed with something. We certainly aren't "normal." At the low end, they really need the assistance a diagnosis can provide. At the high end, normal people relate to you better if you can put some sort of name on it, even if they don't actually have a good understanding of what that actually means.

Cheers Magna! I'm glad you found it a worthwhile topic.



Personally I didn't find any value in my formal diagnosis. It turned school into a
fountain of free passes instead of directed learning, gave me a label that could be
effectively dismissed by a trusted parent, ironically after having been the name given for
why I did certain things previously. Formal diagnosis is basically an Aspie diploma you
can hang on the wall. Maybe it will impress some people.



Exactly! Either the "professional" diagnosis was genuine, or I'm a pawn in someone else's
scam. The latter speaks poorly of my mom that she would orchestrate/agree to that, and it
speaks poorly of me that such a desperate attempt was made on my pathetic behalf.



Yeah, PDD-NOS seems like it would be a popular choice as a lesser-committal diagnosis that still means something. Yet Aspergers sounds specific enough that you could assume it would be more officially accepted. This is how conspiracy theories get started.

I wonder how many other members are in this club...


If it wasn't a conspiracy, I at least had ignorance in my favor. I had zero idea what I
was being tested for and had never heard "aspergers" until the diagnosis was rendered.


Those are certainly good points. Unfortunately I have a very strong need to self-
classify, so I actually want labels. I just need them to be accurate.


Yep, that's true. The trouble comes in when dealing with the "dash of autism" group since
everything can potentially be something else in many cases.

Thank you everyone who replied!

OP, I am curious, what does your mom say about your symptoms now? Did she forget about your symptoms from your childhood? Does she think you slip in and out of it?

Are you confused now about yourself because you thought you had an answer for why you have always been different?

The only thing she ever really mentioned to me is thinking I have "super-sonic" hearing. I think it just seems that way to her because she has some hearing loss from working around lab equipment. I'm not confident that there's an available control to test me/her though.

Some sounds definitely hurt me that don't seem to bother others (ripping packing tape, piccolos, music students singing loudly, dogs barking, birds squawking, someone drilling on the other side of a concrete wall). As a child, the sound of tearing foil would make me scream/cry as well as popping balloons. I have a scar under my chin from being startled when I was a child by an old car starting in the garage, slipping and falling (on two different occasions).

I was scolded for lack of eye contact as a teen, but it's not been mentioned since as I got good enough at it. It's still hard to maintain for long periods of time, or if someone has a particularly piercing gaze. It's inconsistent, but possible.

My grandma taught me to act outwardly excited when I received a gift or was offered to go somewhere fun. I don't know if that's even relevant, but it was a difference someone noticed.

Tactile sensitivity can drive me nearly mad, tags & wrong texture/fit clothing were a pain as a child/teen. I think my mom has forgotten about that and doesn't even know touch sensitivity is still highly aggravating at times.

You're exactly right; It's caused me confusion to have the diagnosis called into question. Credibility is given to the idea since there's really nothing that couldn't be explained by some other phenomenon for me. Maybe it's all in my head.