why are self-diagnosed aspies considered "posers?"

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CuriousKitten
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07 Jul 2012, 12:31 pm

Tuttle wrote:
So you're saying you value data from 3 people more than thousands because you are one of those 3, and know the other two. The data does not support this.


those three happen to be 75% of people I know in real life and know the history of that I'm certain are/were Aspie/HFA, with the fourth person still being young -- I don't exactly have a wide social circle.

And you are completely discounting the study from South Korea. They found 1 in 38, but we're only diagnosing 1 in 88? The difference was they started with a true random sampling, not just those already diagnosed.

I'm not saying that those who are undiagnosed and therefore not included in the study are all working. I have already stated that like many in the study, I did have over 10 years where I was not employed when I was younger, but that has not proven to be a life-long situation. It is however logical to question the significance of any set of statistics that only looks at part of the picture. Statistics drawn from the diagnosed also indicate that it is a disease of young males, but I know that is not true either.

Statistics can be made to say whatever you want them to. Always look at the sampling pool they are pulled from and what ax the authors of the study may have to grind.

Tuttle wrote:
What they found is that only 15% of autistic adults had full time paid employment, but when given enough support in a period of 3 years they could find jobs for 70% of them. It's not that we're not employable, its that we need a lot of help to get and keep the jobs.


Now, there's a statistic I can believe to be reasonably accurate.

All the ad campaigns highlighting how broken and unemployable we are just makes it that much harder for us to honest with employers about being on the spectrum. What is sorely needed is ad campaigns that highlight the positives we bring to the table, and that foster understanding and acceptance.

and btw, being underemployed can still be a good life.


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07 Jul 2012, 12:42 pm

MrPickles wrote:
in my opinion to demand a diagnosis before accepting someone as Aspie is foolish beyond belief. Think about it for a bit - We may be the only group in the world to demand the often unsupported opinion of someone outside our group that you are one of us before you can be one of us.


But on the other hand, there are people who claim they have Aspergers and whatever else when they don't. Where do you draw the line on that? And yes, I know someone like that. She claims she's intolerant to sugar and wheat and has all kinds of medical conditions; but hasn't been diagnosed and has never got any help at all. Yet, claims she has these illnesses.



Tuttle
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07 Jul 2012, 1:42 pm

CuriousKitten wrote:

And you are completely discounting the study from South Korea. They found 1 in 38, but we're only diagnosing 1 in 88? The difference was they started with a true random sampling, not just those already diagnosed.



No, I'm using the ideas associated with statistical significance. These are large populations. There is no reason to believe that people with the same traits as the ones they're selecting for have completely different results of employment.

Also, Verdandi has said that one of these studies started from a random sampling of households in the UK. I don't have the time at the moment to investigate this claim, however I have heard before that there have been studies done in the UK that began in that manner - screening out to find the people who were undiagnosed. They found at that point that 1% of the adults in the UK were autistic. (This is while were were saying 1/100 for children as well). It wouldn't surprise me if they continued on to do other questions at the same time, I just don't have time to look into that now.

None of these are arguing that we're not employable. They're arguing that we're not employed and that this is a bad thing. They're arguing that we're an underutalized group with strengths that should be utalized better. They're arguing that countries can save money by spending it first to support autistic workers instead of having support us, because of the rates that we become employable with support.

I personally might not become employable. But a lot of us need help. Without help we aren't employable. With that help we are. And give us that help and we can succeed, but we need that help to succeed. That help costs less, and lets us feel better than as it is now though. But that still doesn't mean we become actually employable on our own without the help.



CuriousKitten
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07 Jul 2012, 1:52 pm

MrPickles wrote:
Boomshika wrote:
I first noticed aspergers in myself about a year ago and now i'm starting to see that a lot of self-diagnosed aspies are not taken seriously. apparently, if you self diagnose, a lot of "real" aspies are pissed at that. WTF? what about people who grew up before aspergers was widely known about? what about the millions of people who are uninsured and can't aford to see a doctor to diagnose them?
i personally have never quite felt like i fit in anywhere growing up, was made fun of all 12 years of school, have always had trouble showing physical affection, have always loved computer games, have always struggled to keep jobs. had all of these traits long before i even heard of aspergers. i am 27, and am too old to be listed on my parent's insurance. i don't go to the doctor because i can't afford it.
so because of this, i'm not supposed to call myself an aspie when i know that i am, lest i be labeled "poser?" seriously?... :wall:


I was undiagnosed for 60years - always knew I was different from most everyone around me - Once referred to myself as a geekie - geek for years - Figured out that I fit the definition of Asperger's 10+ years ago - would still be undiagnosed if not for the fact that my son had a problem with depression that lead us to a psychologist who was himself on the spectrum. My brother who is just Asper as I am is still undiagnosed - One of my sisters daughters and her son show unmistakable signs of Asperger's all remain undiagnosed adults. I have friends at a Linux users group that are definitely on the spectrum - yet undiagnosed. Add to this the number of misdiagnoses I have heard about - we have is a real mess here in this community.

as I see it somewhere between 70 to 90% of all Asperger's are undiagnosed - in my opinion to demand a diagnosis before accepting someone as Aspie is foolish beyond belief. Think about it for a bit - We may be the only group in the world to demand the often unsupported opinion of someone outside our group that you are one of us before you can be one of us. If we are to stand up and demand fair treatment we must find and include all of our kind as much as possible into our fold for strength comes in numbers and clearness of effort.

So Let me say -- I see you Aspie - I accept you as Aspie.

We have a wonderful opportunity coming our way -- the "Professionals" are about to abandon the term Asperger's, I say that we seize the term for our own use - that we strip away the terms syndrome and disability from it and use it to describe our community of people - that goes well beyond the narrow medical health definitions and includes all like us.


That is an excellent idea. There is much more to us than our challenges!! !


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CuriousKitten
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07 Jul 2012, 2:01 pm

Tuttle wrote:
I personally might not become employable. But a lot of us need help. Without help we aren't employable. With that help we are. And give us that help and we can succeed, but we need that help to succeed. That help costs less, and lets us feel better than as it is now though. But that still doesn't mean we become actually employable on our own without the help.


I agree that those who haven't found work heartily deserve whatever help is needed.


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eva4ever
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07 Jul 2012, 2:13 pm

I"m 39 and through my 3 yr old son's diagnosis, I realized I"m on the spectrum too. I was already an adult in college when aspergers was put in the DSM. I'd like to see a doctor for official DX but my insurance won't cover it and I don't have the money. And yes, I've experienced much hateration from "legit" and aspies.



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07 Jul 2012, 3:13 pm

Tuttle wrote:
I personally might not become employable. But a lot of us need help. Without help we aren't employable. With that help we are. And give us that help and we can succeed, but we need that help to succeed. That help costs less, and lets us feel better than as it is now though. But that still doesn't mean we become actually employable on our own without the help.


Agreed. I do need help with finding a job, etc. The person that is meant to be helping me is being judgemental and has decided that my Autism and Hyperacusis can't be that bad because I've just been diagnosed. :x



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07 Jul 2012, 5:38 pm

Tuttle wrote:
CuriousKitten wrote:

And you are completely discounting the study from South Korea. They found 1 in 38, but we're only diagnosing 1 in 88? The difference was they started with a true random sampling, not just those already diagnosed.



No, I'm using the ideas associated with statistical significance. These are large populations. There is no reason to believe that people with the same traits as the ones they're selecting for have completely different results of employment.

Also, Verdandi has said that one of these studies started from a random sampling of households in the UK. I don't have the time at the moment to investigate this claim, however I have heard before that there have been studies done in the UK that began in that manner - screening out to find the people who were undiagnosed. They found at that point that 1% of the adults in the UK were autistic. (This is while were were saying 1/100 for children as well). It wouldn't surprise me if they continued on to do other questions at the same time, I just don't have time to look into that now.

None of these are arguing that we're not employable. They're arguing that we're not employed and that this is a bad thing. They're arguing that we're an underutalized group with strengths that should be utalized better. They're arguing that countries can save money by spending it first to support autistic workers instead of having support us, because of the rates that we become employable with support.

I personally might not become employable. But a lot of us need help. Without help we aren't employable. With that help we are. And give us that help and we can succeed, but we need that help to succeed. That help costs less, and lets us feel better than as it is now though. But that still doesn't mean we become actually employable on our own without the help.


I got the study I mentioned mixed up with the study you mentioned. I don't actually know the statistics for employment, etc. for that other study, but I'll see if I can find it again



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07 Jul 2012, 6:55 pm

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Last edited by SpiritBlooms on 09 Jul 2012, 6:57 pm, edited 1 time in total.

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07 Jul 2012, 8:30 pm

That's what I don't understand. I feel that they have as much of a right to be on WP.


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08 Jul 2012, 7:04 am

CockneyRebel wrote:
That's what I don't understand. I feel that they have as much of a right to be on WP.


No one is saying the undiagnosed don't have a right to be here. Not that I've seen, and I'm one of those undiagnosed. They are saying undiagnosed shouldn't say they have Asperger's. Or autism.

Personally, I think we need a definition of autism/asperger's that doesn't rely on a diagnosis. So many people with autism/Asperger's see it as a difference rather than a disorder. Having an officially definite psychiatric disorder shouldn't be required for saying "yes, I'm this way".

I have some autistic traits. I don't need a diagnosis to say that. No one here has suggested I should. And yet, I my autistic traits were stronger, strong enough to say I have it, then some would consider my a poser unless I get official certified as having a psychiatric disorder. Even though so many say it's not a disorder.


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08 Jul 2012, 7:18 am

Mysty wrote:
Personally, I think we need a definition of autism/asperger's that doesn't rely on a diagnosis. So many people with autism/Asperger's see it as a difference rather than a disorder. Having an officially definite psychiatric disorder shouldn't be required for saying "yes, I'm this way".


I really want there to be an explicitly different word that doesn't rely on a diagnosis and isn't necessarily a disorder and is like Callista's "culturally autistic".

I just really don't want "autistic" to only mean being that want and not being a disorder and being sure that there is clinical impairment too. I care about the impairment, not about the diagnosis coming from a professional. I just have a hard time understanding how people can be sure enough that they can use the self-diagnosis language without ever talking to a professional.



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08 Jul 2012, 8:29 am

Tuttle wrote:
Mysty wrote:
Personally, I think we need a definition of autism/asperger's that doesn't rely on a diagnosis. So many people with autism/Asperger's see it as a difference rather than a disorder. Having an officially definite psychiatric disorder shouldn't be required for saying "yes, I'm this way".


I really want there to be an explicitly different word that doesn't rely on a diagnosis and isn't necessarily a disorder and is like Callista's "culturally autistic".

I just really don't want "autistic" to only mean being that want and not being a disorder and being sure that there is clinical impairment too. I care about the impairment, not about the diagnosis coming from a professional. I just have a hard time understanding how people can be sure enough that they can use the self-diagnosis language without ever talking to a professional.


I really, really, dislike the term "culturally autistic". Maybe there's places where it fits, but not here. We aren't talking about learned differences, which is what "culturally autistic" implies. We are talking innate differences. Any cultural differences come out of differences that aren't cultural, that are more basic, innate, than culture. Culture one learns from the world around you.

Broader autistic phenotype is better, but still, I dislike the assumption that the difference is genetic. Though it's better than the assumption that it's cultural. It's also long, and the abbreviated form BAP is ambiguous.

I'm talking about a term and definition for it, for having autistic traits without regard for whether or not psychiatric professionals thinking it's a disorder, without assumptions about origin. And not just a term for those without diagnosis. Also, a term/definition that can be used as well by those with a diagnosis but who don't define there differences as simply a disorder.


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08 Jul 2012, 10:58 am

Tuttle wrote:
Mysty wrote:
Personally, I think we need a definition of autism/asperger's that doesn't rely on a diagnosis. So many people with autism/Asperger's see it as a difference rather than a disorder. Having an officially definite psychiatric disorder shouldn't be required for saying "yes, I'm this way".


I really want there to be an explicitly different word that doesn't rely on a diagnosis and isn't necessarily a disorder and is like Callista's "culturally autistic".

I just really don't want "autistic" to only mean being that want and not being a disorder and being sure that there is clinical impairment too. I care about the impairment, not about the diagnosis coming from a professional. I just have a hard time understanding how people can be sure enough that they can use the self-diagnosis language without ever talking to a professional.


I would really like there to be a term that is completely different for people who are "autistic-like," but who don't experience impairments.

As far as I'm concerned, Aspergers/Autism is a DISORDER, and, while it's difficult to account for public perception, I think there is a real danger of the diagnosis becoming watered-down by too many people using Aspergers/Autism to mean "just a difference," or a "personality type."

That said, I also don't have a problem with self-diagnosis, just the people who self-diagnose, but are otherwise impairment-free, which also applies to people who are professionally-diagnosed, but who are otherwise impairment-free.


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08 Jul 2012, 12:10 pm

Mysty wrote:
I really, really, dislike the term "culturally autistic". Maybe there's places where it fits, but not here. We aren't talking about learned differences, which is what "culturally autistic" implies. We are talking innate differences. Any cultural differences come out of differences that aren't cultural, that are more basic, innate, than culture. Culture one learns from the world around you.

Broader autistic phenotype is better, but still, I dislike the assumption that the difference is genetic. Though it's better than the assumption that it's cultural. It's also long, and the abbreviated form BAP is ambiguous.

I'm talking about a term and definition for it, for having autistic traits without regard for whether or not psychiatric professionals thinking it's a disorder, without assumptions about origin. And not just a term for those without diagnosis. Also, a term/definition that can be used as well by those with a diagnosis but who don't define there differences as simply a disorder.


The idea of culturally autistic isn't that it comes from cultural differences, but that its people who fit with the autistic culture because they have those traits.



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08 Jul 2012, 12:15 pm

I dont really get the cliqueness of some diagnosed aspies. I was diagnosed, but only because my parents had good insurance and I was 8 years old. However I dont think anything less of those who are self diagnosed. I worry though about access to services that are much needed but unreachable without a diagnosis and a means to get one.

But as far as legitimacy, I have come to believe that the high rate of hypochondria is really BS spewed from poor quality control in medicine.
I have met several people diagnosed with hypochondria at one point and all were actually very ill, but had complicated illnesses, my mother included. I dont like how medicine seperates one from the intuitions of one's body and mind. My advice to the OP...you know yourself better than anyone else...you lived with your mind all of your life. You are the expert of you.

Jojo


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