Being told by someone that they are AS

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AuntyCC
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21 Dec 2009, 4:39 pm

I've seen a few threads about people who say they have AS without having a formal diagnosis. I'm intrigued. I'm quite old, have worked in a wide variety of organisations for many years, but have only ever met one person who said he had Aspergers (and he did have a diagnosis and he did require a great deal of support to get by.)

So I wondered, these discussions about self-diagnosed AS, what are they based on? Have you (dear reader) ever had someone tell you they were AS, with or without a diagnosis?

And conversely, if you are self-diagnosed, have you ever told anyone in the real world and why?



FaithHopeCheese
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21 Dec 2009, 5:24 pm

I don't consider myself 'self diagnosed' so my status says that I'm not sure. I don't go around telling people I have it, except I did mention it to my parents to see what their opinion was. I think it would be presumptuous of me to say that I am self-diagnosed but for those who have the confidence to say that, it is their right. I don't flap my arms or jump up and down. I can look people in the eye - it is very uncomfortable and embarassing but I do it because I'm just trying to blend in. I am often 'shell-shocked' when I am in the presence of people I don't know (it takes me two or three years to 'know' someone) and become 'mute'. I am usually sad and frustrated after 'socializing' and I've simply never felt like I fit in, and not in the 'cool' way, but my whole family is weird.

As far as this forum, I look at it as a community where you can be around like minded people. I thought that there would be more acceptance than I have actually observed but there is just as much judgement, criticism and categorizing as any other place I've encountered. I have never found a group that felt like me but I have made one nice friend here and I find the discussions interesting....Anyway, there are several different threads that address this, but maybe this discussion is good. At least it's better than sweeping 'judgements' under the rug. I told myself I was going to quit posting so much, but now look what you made me do. ;) Maybe none of this is even relevant to what you are asking but I had an impulse to respond.



Last edited by FaithHopeCheese on 21 Dec 2009, 6:21 pm, edited 1 time in total.

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21 Dec 2009, 5:28 pm

Yes, one of the official contact people for our aspie social club is a self-diagnosed aspie. Actually, it was his wife who 'diagnosed' him before they married (and she's not a medical professional).

He has never been to see a psychiatrist of psychologist, but those professionals who have met him at aspie support groups accept that his self-assessment is correct.

One day when he had time to kill I suggested that he do the (unofficial) Aspie Quiz at http://www.rdos.net/eng/Aspie-quiz.php

I'm a formally diagnosed aspie and I score 132 on that test; so does another formally diagnosed friend of mine.

Our 'undiagnosed' friend scored over 160.


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Alphabetania
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21 Dec 2009, 5:37 pm

PS: I like telling people I am autistic, for numerous reasons, not the least of which being that it totally muddles them up and befuddles their preconceptions. It has also helped several people (particularly my students -- I am a lecturer) who have some kid in the family that they've been ashamed to say is autistic or has ADHD, and when I speak so freely (and proudly) about it, they open up and unburden themselves, and it gives them hope.

I don't like meltdowns; I don't like sensory problems; I don't like being messy, and I don't like misunderstandings; but I do like being autistic. It's bedtime now and I must work tomorrow, otherwise I'd list the reasons.


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FaithHopeCheese
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21 Dec 2009, 5:50 pm

Alphabetania wrote:
.

I don't like meltdowns; I don't like sensory problems; I don't like being messy, and I don't like misunderstandings....


Me neither, and without a diagnosis I get no compassion - I'm just lazy, immature and hypersensitive.....

note to self: ixnay on the ostpay



Last edited by FaithHopeCheese on 22 Dec 2009, 1:13 pm, edited 1 time in total.

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21 Dec 2009, 6:06 pm

I did when I first found out about it, but I wish I didn't. Most people replied "What is that?" and I got one relative that said "Duh!" :lol:

Anyway, I found out about it cause I took a job with someone on the spectrum. I don't know where he was, but he was obvious, with a monotone, no eye contact, and made social foux-pas that I would never make myself.

But anyway, this guy thought he figured NTs out, but looking at me he up front asked me why I was so different. I said I was just strange, and he was like "Duh, strange like me! But you are not as bad."

After that, I've had a couple of people take me aside and ask about it randomly. But as in my sig, the mental health professionals said no, and I would never tell anyone that today.


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MathGirl
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21 Dec 2009, 7:04 pm

My mother first brought it up, and said that I have it. She never took the effort to diagnose me, mainly because she rarely takes the effort to do anything major that's outside of her own agenda. I'm sure, however, that my mother knows me better than any professional does. In addition, a psychiatrist back in my home country said that I'm borderline autistic (Asperger's wasn't known about back then in my country). As a child, I've had clear speech and social development delays.

I've talked to a few more people, including a school psychologist, and they all have said that it's very likely. I'm going for an assessment in January. One thing I'm worried about is that the assessment will only be 1.5 hours long. I mean, is that really going to present enough evidence from which to draw a viable conclusion?


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Last edited by MathGirl on 21 Dec 2009, 7:12 pm, edited 1 time in total.

Apple_in_my_Eye
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21 Dec 2009, 7:10 pm

I have never told anyone IRL about a self-diagnosis ("self-identified" might be a better term (and I've never said that either)), and even if I had an official diagnosis, I still wouldn't tell anyone.

I know from having a physical condition that people don't generally listen, or care about diagnoses. Naming specific problems without any jargon seems to work a lot better. And it avoids the whole "why do you want to be labelled" issue.

I've never had anyone, self-dx'ed or not, tell me they had AS (or PDD-NOS or whatever). Perhaps amongst teens and early 20-somethings there's some capricious self-labelling going on -- like with cutting becomming 'popular' amongst some teen sub-cultures, I gather. I don't see any indications/mentions of ASC's IRL at all.



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21 Dec 2009, 7:52 pm

Alphabetania wrote:
Yes, one of the official contact people for our aspie social club is a self-diagnosed aspie. Actually, it was his wife who 'diagnosed' him before they married (and she's not a medical professional).

He has never been to see a psychiatrist of psychologist, but those professionals who have met him at aspie support groups accept that his self-assessment is correct.

One day when he had time to kill I suggested that he do the (unofficial) Aspie Quiz at http://www.rdos.net/eng/Aspie-quiz.php

I'm a formally diagnosed aspie and I score 132 on that test; so does another formally diagnosed friend of mine.

Our 'undiagnosed' friend scored over 160.


Hmmm, I scored 163 on that test. I'm sure this has been said before, but I wonder if the fact that the diagnostic criteria was designed for children affects the diagnosis of an adult. It's a developmental delay after all and we all have different life experiences. For instance I'm pretty good at reading facial expressions but that's because I was a very sensitive child of a father with an unpredictable explosive temper. I became hyper-vigilant as a result. My problem is more over interpretation than not. I'm not going to go on the record as saying I have Asperger's because I guess it's possible that all the characteristics could be attributed to other causes. But one thing that has been said repeatedly is that for someone to diagnose themselves does harm to the professionally diagnosed. How exactly?


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21 Dec 2009, 8:20 pm

there are pro's and cons to self diagnosis.

there is not enough known about adult AS and its presentation. the original work done by Asperger was done on children and the population sample was very small...4

the descriptions and diagnostic criteria are open to interpretation.

remember that facts dont change..ever. just our interpretation of them...and this changes with context.


because of the lack of qualified professionals who are prepared to make a diagnosis in an adult
then seekign a diagnosis can be difficult...remember it is a condition of children, most health care professionals dont want to stand over an adult diagnosis but many more will as it is a cash industry and autism is the new
aids.

self diagnosing is dangerous as it is similar to schizotypal, foetal alcohol syndrome, narcissistic personality disorder and autistic wannabes...the people who opt out of life and need an excuse.


my advice?

do what mosr people with AS never do..talk to someone about it..get advice as to what steps to take.

start with a doctor....if they are older than you then they probably didnt learn about AS at medical school...
and if they are younger than you, then they did learn about it, they just have no idea what to do when they see someone with it.

hope this helped...


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21 Dec 2009, 9:36 pm

Aimless wrote:
But one thing that has been said repeatedly is that for someone to diagnose themselves does harm to the professionally diagnosed. How exactly?
Because if they have inaccurately diagnosed themselves with AS and go around telling everyone that they have Asperger's without getting an official diagnosis first, they are helping promote a false impression of AS. People are then more likely to say that Asperger's is a false condition, and consequently underestimate the problems of people who actually have AS.


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21 Dec 2009, 9:48 pm

MathGirl wrote:
Aimless wrote:
But one thing that has been said repeatedly is that for someone to diagnose themselves does harm to the professionally diagnosed. How exactly?
Because if they have inaccurately diagnosed themselves with AS and go around telling everyone that they have Asperger's without getting an official diagnosis first, they are helping promote a false impression of AS. People are then more likely to say that Asperger's is a false condition, and consequently underestimate the problems of people who actually have AS.


The same deficiency in accuracy exists within the uneducated professionals who diagnose it blindly, and those who refuse to acknowledge it and shuffle between alternate diagnoses that do not fit their patient. This is not a problem with self-diagnosis, it appears to break down to simple fear of being marginalized or mocked by others who do not understand what an ASD is.


M.


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21 Dec 2009, 10:51 pm

MathGirl wrote:
Because if they have inaccurately diagnosed themselves with AS and go around telling everyone that they have Asperger's without getting an official diagnosis first, they are helping promote a false impression of AS. People are then more likely to say that Asperger's is a false condition, and consequently underestimate the problems of people who actually have AS.

Has anyone actually encountered lots of people doing that? Even one person? Or is it a guess?

In my whole life I've never met anyone IRL claim to have it, official dx or not. Then again I don't out much.



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21 Dec 2009, 11:30 pm

makuranososhi wrote:
MathGirl wrote:
Aimless wrote:
But one thing that has been said repeatedly is that for someone to diagnose themselves does harm to the professionally diagnosed. How exactly?
Because if they have inaccurately diagnosed themselves with AS and go around telling everyone that they have Asperger's without getting an official diagnosis first, they are helping promote a false impression of AS. People are then more likely to say that Asperger's is a false condition, and consequently underestimate the problems of people who actually have AS.


The same deficiency in accuracy exists within the uneducated professionals who diagnose it blindly, and those who refuse to acknowledge it and shuffle between alternate diagnoses that do not fit their patient. This is not a problem with self-diagnosis, it appears to break down to simple fear of being marginalized or mocked by others who do not understand what an ASD is.

QFT.

And between how little most professionals know about ASDs and how obsessive people with ASDs are, there are likely to be more professional diagnoses based on stereotypes than self-diagnoses that are!



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21 Dec 2009, 11:36 pm

I've met a few people on the spectrum, in three categories: those who told me themselves, those who I was told of by others, and those whose behaviors were obvious, persistent and consistent with being on the spectrum. I've told a few people; I don't introduce myself by it, but I don't shy from it either. If I do, I am doing myself a disservice by impairing communication. And to those who I have told, I've also explained the nature of my unofficial status. Some people, especially those who knew me when I was young, instantly recognize certain traits in my behaviors; others are skeptical or deny the possibility... which is disappointing, but it is their right to have a dissenting opinion. I recognize that through musical and theatrical training, my expressions and interaction is different that they might expect... although it is precisely as a result of that experience that I do function as well as I am able with individuals, small groups, or when I am in a specific role (such as a teacher). I've gotten off topic... summary: yes, people have told me, although they have been almost all professionally diagnosed (and much younger than me); yes, I have told people WITH the qualifier that my diagnosis is unofficial, but don't bring it up as a general rule.


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21 Dec 2009, 11:56 pm

The only people who I've been told had it (by their parents) were diagnosed.
If people ask me if I have it (which they have), or if they say something like "you're so much like my child/sibling/whatever with an ASD" (which has also been said to me) I tell them that I strongly suspect I have AS, but that I'm not diagnosed.


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