If your Autism/Aspergers was suddenly removed

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HereBeDragons
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03 Nov 2015, 6:07 pm

Every few years I am required to get re-evaluated for Aspergers/Autism. Waiting on the results right now, but it got me thinking:

How would you feel if your diagnosis was removed. That you had come so far as to not classify as autistic anymore? Would you be proud because you'd done something few others had? Sad because such a big part of your identity had suddenly vanished?

I put it to you.


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starfox
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03 Nov 2015, 6:21 pm

?! I'm shocked they do that? They must be wrong. It is possible to improve so much that you would no longer fit criteria, but it doesn't mean your not on the spectrum anymore.

It means you have got coping mechanisms. Once a diagnosis is almost completely certain it should not be taken away as in different stages of life your autistic traits can return and you may need help again.


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03 Nov 2015, 6:54 pm

It would give me great relief to get such a diagnoses that my Autism is gone or I never had it but it's not that easy.



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03 Nov 2015, 6:57 pm

HereBeDragons wrote:
Every few years I am required to get re-evaluated for Aspergers/Autism. Waiting on the results right now, but it got me thinking:

How would you feel if your diagnosis was removed. That you had come so far as to not classify as autistic anymore? Would you be proud because you'd done something few others had? Sad because such a big part of your identity had suddenly vanished?

I put it to you.


Trying to think of how to put my thoughts on this into words.

Keep in mind that I felt terribly "wrong" and "broken" and have never fit in all my life, and seeked out a diagnosis as a result of being overwhelmed by this sense of being a failure in the NT world and not knowing why I couldn't "do it".

That being said -- It's like when I was interviewing for a job once at a tv station years ago. A person who worked there said that you have to be careful not to be TOO good at your job, because then you get promoted to a job you CAN"T do very well and your stress and overall workload goes up and it ends up not actually being a good thing to be "promoted".

That's how it would feel to me. Like more of a 'handicap' than being diagnosed, because suddenly so much would be expected of me and all of my quirks would be failures again, like before diagnosis.


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StarTrekker
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03 Nov 2015, 9:13 pm

I wouldn't want one evaluation to suddenly tell me I no longer needed all the help I've been receiving, and that I'm now classified as "normal". I don't think I'd be able to function if that happened.


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Edenthiel
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03 Nov 2015, 10:15 pm

From your description, it seems you are talking about the label, not the actual atypical neurology? If so, I'd feel like I'd fooled them with all the workarounds and compensations and other things I do to get by. And that would bother me because they are exhausting, and stressful, and I'd still need to keep them up all the time but without anything concrete to tell anyone as to "why". Then again, they wouldn't think any different of me, I'd still be just as odd & quirky.


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MjrMajorMajor
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03 Nov 2015, 10:37 pm

I would question the doctor's credentials. I'm not defined by having a stamp on the forehead, except for that stamp being shorthand for what differences and deficits I have.



HereBeDragons
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03 Nov 2015, 11:35 pm

Edenthiel wrote:
From your description, it seems you are talking about the label, not the actual atypical neurology?


Yes, I mean the label. One cannot change how one is wired, and that will always remain the same. But if the label is removed, it is going to change how others see me, and even how I see myself. I was just asking if it happened to you, how would feel about it?


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Edenthiel
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03 Nov 2015, 11:46 pm

HereBeDragons wrote:
Edenthiel wrote:
From your description, it seems you are talking about the label, not the actual atypical neurology?


Yes, I mean the label. One cannot change how one is wired, and that will always remain the same. But if the label is removed, it is going to change how others see me, and even how I see myself. I was just asking if it happened to you, how would feel about it?

I think when I mentioned all the workarounds and adaptations, I was trying to say that if the diagnosis was removed, I would know that the assessment was faulty! I've seen such variability in assessments and diagnosis that I would seriously question the one that suddenly says "no, you aren't AS/ASD any longer". It's not something that just comes and goes. But it is a label that varies highly depending on who is putting it on you. I've met those who say that without language difficulties, there is no autism; I've also met those who say that language doesn't matter except as one of a number of possible indicators...each possible trait seems to follow that pattern.

So how would I feel about it? Probably like I still knew who I was and maybe I'd feel a little proud *if* the new assessment meant that I'd learned enough to get by in a world that isn't always understanding (and I could do so without exhausting myself and wearing myself ragged). But if that were the case, a new diagnosis would have nothing to do with it...it would merely be an after the fact confirmation of the fact.


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04 Nov 2015, 12:31 am

If mine was removed, I would hope it would be the appropriate label I have now that finally fits. It could be Social Communication Disorder or something familiar if that new condition was discovered and it fit me more than AS.


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iliketrees
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04 Nov 2015, 3:17 am

It is possible to have residual autism, where you previously met the criteria but now you no longer don't. This hasn't happened to me (yet?).

But if my diagnosis got removed I'd feel very afraid for my future.



izzeme
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04 Nov 2015, 3:24 am

If my diagnosis got removed, i'd be proud that i manage to cope that well, but i'd still ask for a second opinion; Autism doesn't disappear...



EzraS
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04 Nov 2015, 8:12 am

My autism does not identify me. It only impairs and inhibits me. If it was removed, I would be the real me on the outside finally, instead of being trapped inside a mind and body I have such limited external control over.



iliketrees
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04 Nov 2015, 8:32 am

EzraS wrote:
My autism does not identify me. It only impairs and inhibits me. If it was removed, I would be the real me on the outside finally, instead of being trapped inside a mind and body I have such limited external control over.

What the OP is asking is that if your diagnosis got suddenly removed.



EzraS
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04 Nov 2015, 9:09 am

iliketrees wrote:
EzraS wrote:
My autism does not identify me. It only impairs and inhibits me. If it was removed, I would be the real me on the outside finally, instead of being trapped inside a mind and body I have such limited external control over.

What the OP is asking is that if your diagnosis got suddenly removed.


Which would mean I was no longer autistic, because I had somehow overcome my autism. Unless you mean only the label was removed, but I don't think that's what was being asked.



babybird
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04 Nov 2015, 9:33 am

It's a hard question to answer I think because sometimes I feel that I have overcome a lot through doing hard work on myself and then I regress and find that I have taken about 50 million steps back.

So, with that in mind I think that if my diagnosis was removed I'd be in a bit of a pickle because I would no longer be able to ask for help when I need certain requirements.

Surely professionals who are specialised within the field of autism/aspergers are aware of certain improvements and then sudden setbacks, so as not to remove a diagnosis from a person.

Not too sure if I've answered the question though....


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