why are self-diagnosed aspies considered "posers?"

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Mysty
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08 Jul 2012, 10:25 pm

XFilesGeek wrote:
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.


I get your thinking. But, see, I don't think such a term should be limited to those who don't have the disorder. For a couple reasons. First, people who aren't diagnosed aren't always going to know which side of the diagnosed/not-diagnosed line they fall on. A term apply to people diagnosed should be defined in terms of diagnosis. Secondly, even people with a valid diagnosis could benefit from being able to use a term that doesn't define them by their impairment.


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CuriousKitten
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08 Jul 2012, 10:25 pm

Mysty wrote:
Tuttle wrote:
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.


I still dislike the term for the reasons I said. I also don't think there's a such thing as autistic culture. But if there is, the term culturally autistic would refer to being part of that culture, NOT to have any particular innate traits. Fitting in my come from innate traits, but the term still doesn't refer to the innate traits. Culturally means culturally.


How about "Autisic Community" ? This would include everyone on the spectrum and any family, professionals or others who identify with us.


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Mysty
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08 Jul 2012, 10:31 pm

CuriousKitten wrote:
Mysty wrote:
Tuttle wrote:
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.


I still dislike the term for the reasons I said. I also don't think there's a such thing as autistic culture. But if there is, the term culturally autistic would refer to being part of that culture, NOT to have any particular innate traits. Fitting in my come from innate traits, but the term still doesn't refer to the innate traits. Culturally means culturally.


How about "Autisic Community" ? This would include everyone on the spectrum and any family, professionals or others who identify with us.


Maybe a useful term, but not a term for people with autistic traits (and only those with traits) irregardless of how disabled they are by those traits. Also, it's a term for a group of people, not a person.


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08 Jul 2012, 10:53 pm

Mysty wrote:
CuriousKitten wrote:
Mysty wrote:
Tuttle wrote:
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.


I still dislike the term for the reasons I said. I also don't think there's a such thing as autistic culture. But if there is, the term culturally autistic would refer to being part of that culture, NOT to have any particular innate traits. Fitting in my come from innate traits, but the term still doesn't refer to the innate traits. Culturally means culturally.


How about "Autisic Community" ? This would include everyone on the spectrum and any family, professionals or others who identify with us.


Maybe a useful term, but not a term for people with autistic traits (and only those with traits) irregardless of how disabled they are by those traits. Also, it's a term for a group of people, not a person.


If we start separating ourselves out by traits, diagnosis or disability, we would rapidly end up with too many categories to keep track of. A term that is all-inclusive would do more to build the community so that we can more easily make our voices heard.


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Venger
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08 Jul 2012, 11:38 pm

I was diagnosed with AS like 17 years ago way back in 1995. Therefore, I think self-diagnosed people should get off their azz and go do it. lol



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09 Jul 2012, 12:24 am

Venger wrote:
I was diagnosed with AS like 17 years ago way back in 1995. Therefore, I think self-diagnosed people should get off their azz and go do it. lol


Will do, as soon as you send me a check to pay for it!


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09 Jul 2012, 12:32 am

Venger wrote:
I was diagnosed with AS like 17 years ago way back in 1995. Therefore, I think self-diagnosed people should get off their azz and go do it. lol


There is nobody in my area qualified to diagnose a 52 year old woman. I'm not going to go driving to Atlanta (many hours each way) to make this happen.

getting diagnosed as a kid is easy. The older you are the harder it gets to get a diagnosis, let alone therapy.


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09 Jul 2012, 1:57 am

Venger wrote:
I was diagnosed with AS like 17 years ago way back in 1995. Therefore, I think self-diagnosed people should get off their azz and go do it. lol


Why waste the time and money unless you are in need of treatment - and many cases with adults one winds up going in for something other than the Asperger's anyway because insurance won't cover it anyway. What is worse - there is a fairly good possibility of a misdiagnosis - even with my son the first therapist missed Asperger's in my son, I have seen two marriage concealers both did not spot me as Asperger's even though I present with many of the classic traits. May I say that this is a pi** poor performance by three out of four "professionals" in my case to get it right. -- And you want to take their word for it that we are or are not Asperger's! I would be much more willing to believe an on-line test.

Now, here is the big rub -- on this site we self report our diagnosis status. I believe you when you say that you diagnosed Asperger's in 1995, I do believe you. However, it is no bigger leap to believe someone when they say they took one of the on-line tests and tested Asperger's - in that it weakens their standing here to be self diagnosed, I see no reason not to believe them - if they were going to lie why not go whole hog - and claim a formal diagnosis, this site does no back checking.


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09 Jul 2012, 3:11 am

Venger wrote:
I was diagnosed with AS like 17 years ago way back in 1995. Therefore, I think self-diagnosed people should get off their azz and go do it. lol

What for? The satisfaction of people we don't know on WP? No thanks, I'd much rather not be labeled as that wouldn't benefit me in any way at this time. No one knows me better than myself and I'm quite capable of reading the diagnostic criteria and knowing objectively whether or not I meet it as are many others. And what's more is I meet the diagnostic criteria (physical anomalies, no faking that) for a rare syndrome that is known to cause autism and it is something most shrinks would likely know nothing about. It would be a waste of money I don't have.



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09 Jul 2012, 3:26 am

Venger wrote:
I was diagnosed with AS like 17 years ago way back in 1995. Therefore, I think self-diagnosed people should get off their azz and go do it. lol


Not everyone can. Where would they go? Who would pay for it?

In 1995 I was already 20 years old. I haven't seen a psychologist/psychiatrist since before I quit school at the age of 16. They never did me any good when I was underaged. Why would I want to see them now?

Maybe when I was younger they could have helped me but what could they do for me now? At this point I just want to stay in my home most of the time and not be bothered by people.



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09 Jul 2012, 4:21 am

I have to wait for a diagnosis until I have insurance. Fortunately for me, I'll be getting insurance soon, but many more don't have that luxury.



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09 Jul 2012, 4:43 am

In the UK, some primary care trusts (PCTs) won't fund the assessments for adults. So unless you have the money, you can't get diagnosed.



Mysty
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09 Jul 2012, 6:16 am

CuriousKitten wrote:
Mysty wrote:
CuriousKitten wrote:
Mysty wrote:
Tuttle wrote:
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.


I still dislike the term for the reasons I said. I also don't think there's a such thing as autistic culture. But if there is, the term culturally autistic would refer to being part of that culture, NOT to have any particular innate traits. Fitting in my come from innate traits, but the term still doesn't refer to the innate traits. Culturally means culturally.


How about "Autisic Community" ? This would include everyone on the spectrum and any family, professionals or others who identify with us.


Maybe a useful term, but not a term for people with autistic traits (and only those with traits) irregardless of how disabled they are by those traits. Also, it's a term for a group of people, not a person.


If we start separating ourselves out by traits, diagnosis or disability, we would rapidly end up with too many categories to keep track of. A term that is all-inclusive would do more to build the community so that we can more easily make our voices heard.


So, would you say gay people shouldn't have a word that distinguishes them from their friends and family as gay, rather than friend or family of a gay person?

Plus, I'm NOT talking about a term for anything to do with community. I'm talking about precisely a term for people with certain traits. Not a community. Individuals. And individuals with those traits. And I'm not talking about many different terms. One term, one that doesn't require a psychiatric opinion to use or not. THAT was my suggestion that started the above exchange, those isn't quoted above.


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Mysty
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09 Jul 2012, 6:25 am

MrPickles wrote:
Venger wrote:
I was diagnosed with AS like 17 years ago way back in 1995. Therefore, I think self-diagnosed people should get off their azz and go do it. lol


Why waste the time and money unless you are in need of treatment - and many cases with adults one winds up going in for something other than the Asperger's anyway because insurance won't cover it anyway. What is worse - there is a fairly good possibility of a misdiagnosis - even with my son the first therapist missed Asperger's in my son, I have seen two marriage concealers both did not spot me as Asperger's even though I present with many of the classic traits. May I say that this is a pi** poor performance by three out of four "professionals" in my case to get it right. -- And you want to take their word for it that we are or are not Asperger's! I would be much more willing to believe an on-line test.

Now, here is the big rub -- on this site we self report our diagnosis status. I believe you when you say that you diagnosed Asperger's in 1995, I do believe you. However, it is no bigger leap to believe someone when they say they took one of the on-line tests and tested Asperger's - in that it weakens their standing here to be self diagnosed, I see no reason not to believe them - if they were going to lie why not go whole hog - and claim a formal diagnosis, this site does no back checking.


I'm imagining some people reading that and thinking "if you don't need treatment, you don't have it".

But that isn't true.

Yes, significant impairment is required for diagnosis. But that does not translate to "needs treatment that requires a diagnosis". A person may be getting help from family, for example. Or maybe their impairments are in the social realm and they can earn a living and don't mind a lack of friends. Or maybe there's just no treatment available with or without a diagnosis.


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09 Jul 2012, 7:33 am

Since when was there treatment for Autism / Aspergers? :? Ok, those of us with speech problems may get therapy and those with co-morbid disorders (epilepsy, etc) may get treated for that; but there's no treatment as such.



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09 Jul 2012, 7:54 am

Roninninja wrote:
I honestly don't care if someone is self diagnosed, it makes no difference to me. Of course, that might be my Aspegers talking there! I think having advice from NT's can be helpful, they can sometimes let you know if you said or did something abnormal.



Or better yet, who is better qualified than another person with Autism? Normal people, though they may be specialists don't feel what we feel and don't have the issues that we have. And normal people is hardly in a position on this site to say whether some youngster took a self-diagnosis test just to get attention.

Self diagnosis test help those recongnize traits of Autism and in my case though I was diagnosed by professionals twice, these test have given me a much better understanding about my Autism. The only thing I recommend is taking several different self assessment tests that include Autism questions.

I don't know if any of you have heard of Temple Grandin that my friend told me about a few days ago, but she is a very amazing woman with Autism. Besides all of the other issues I have with Autism I still pick fuzz off blankets and couldn't walk until I was 3 where as Temple picked fuzz off carpets and couldn't talk until she was 4. Other than these 2 differences the traits she has are the traits I have as well as my other traits. Here is a Link, though I don't know if it will work

Temple Grandin