A little help here? 99% sure that I have Asperger's Syndrome

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SuSaNnA
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29 Jul 2010, 7:34 am

I saw the doctor today, she said she is 99% sure that I have Asperger's Syndrome,
but she does not want to certify that I have Asperger;s Syndrome, and the reason was.....
she didn't watch me when I was young, so she can't let me have access to the social welfare or benefits
(I'm now 21 years old)

Does everyone of you get diagnosed when you were little?
If not, what shall I do?
I spent lots and lots of money on seeing doctors, and I think I should have those social benefits...



leejosepho
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29 Jul 2010, 7:40 am

SuSaNnA wrote:
she didn't watch me when I was young, so she [says she] can't let me have access to the social welfare or benefits ...

I spent lots and lots of money on seeing doctors, and I think I should have those social benefits...


How much money someone spent is not something that would qualify him or her for social benefits, but neither does that doctor have any final say in the matter. Go to wherever you need to go to apply for disability and hope you find someone sensible enough to assess your present-day state and circumstances ...

... and welcome to WP!


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29 Jul 2010, 7:54 am

Welcome to WP!
We is a :colors: bunch

I personally was diagnosed at 18 months, but I've heard of people being diagnosed at almost any age. You must be very mild though if you got to age 21 w/o anyone saying anything though. I'd check with another doctor or disability services about getting a diagnosis.


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29 Jul 2010, 7:58 am

Noone got around to diagnosing me with anything until I was 52 years old.

Partly, of course, that's because I had the good sense to leave home when I was sixteen and not stop for long anywhere for the next thirty years.

Just because you're good at passing for normal doesn't mean you are normal.



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29 Jul 2010, 8:03 am

SuSaNnA wrote:
but she does not want to certify that I have Asperger;s Syndrome, and the reason was.....
she didn't watch me when I was young, so she can't let me have access to the social welfare or benefits
(I'm now 21 years old)


That qualifies for a Jobsworthy Award, a totally stupid attitude. She can obtain sufficient information from any living relative who witnessed your childhood, and by your recollection. (I was diagnosed with "collateral" obtained from my parents and siblings, when I was 45).

You could find a doctor with a better attitude. If it is possible to get a written statement of the assessment that you have already had, then that can be useful introductory material for the next doctor.

I am guessing that benefits is a big financial deal if you do get certified. And benefits should depend on your functional degree of disability, not the doctor's competence in assessing the precise history of that disability.



SuSaNnA
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29 Jul 2010, 8:03 am

re: peterd

Did the doctor said anything about how he would want to know what you were like as a child?

Peko wrote:
Welcome to WP!
We is a :colors: bunch

I personally was diagnosed at 18 months, but I've heard of people being diagnosed at almost any age. You must be very mild though if you got to age 21 w/o anyone saying anything though. I'd check with another doctor or disability services about getting a diagnosis.

thanks for the warm welcome:)
Sure, I must be really mild.
But I know that my co-ordinations are just not right, and my mind set is not quite the same with normal people

she didn't watch me when I was young, so she can't let me have access to the social welfare or benefits
(I'm now 21 years old)[/quote]

Quote:
That qualifies for a Jobsworthy Award, a totally stupid attitude. She can obtain sufficient information from any living relative who witnessed your childhood, and by your recollection. (I was diagnosed with "collateral" obtained from my parents and siblings, when I was 45).

You could find a doctor with a better attitude. If it is possible to get a written statement of the assessment that you have already had, then that can be useful introductory material for the next doctor.

I am guessing that benefits is a big financial deal if you do get certified. And benefits should depend on your functional degree of disability, not the doctor's competence in assessing the precise history of that disability.

Sure, both of my parents were there when the doctor asked questions.

But I was thinking about the childhood witness issue...if a family just go and read a book about a particular disease and the 3 of them answer the doctors questions according to the book just to get diagnosed...
I mean, some people might want to cheat for social benefits, and all they need to do is to read a book right?
I mean...childhood witnesses can be an area where people tell lies right??



pgd
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29 Jul 2010, 8:18 am

SuSaNnA wrote:
I saw the doctor today, she said she is 99% sure that I have Asperger's Syndrome,
but she does not want to certify that I have Asperger;s Syndrome, and the reason was.....
she didn't watch me when I was young, so she can't let me have access to the social welfare or benefits
(I'm now 21 years old)

Does everyone of you get diagnosed when you were little?
If not, what shall I do?
I spent lots and lots of money on seeing doctors, and I think I should have those social benefits...


----

I agree with what leejosepho said above.

Unfortunately, part of medicine/doctors/health care plans - year 2010 - can engage in a strange kind of game playing with customers, that is, many doctors tend to play games especially with customers over the age of 21. Once a person is 21, it's sink or swim with some of the doctors; also, some doctors working for HMOs are told to make light of adult customer inquiries about things like Asperger's and to deny HMO benefits to them (so the HMO can preserve profits). Some HMOs do not offer testing for adults (21 and over) with ADHD, dyspraxia, Asperger's, or autism. What the HMOs do is to take the customer's money for an office visit and then say something like the customer should contact some other place (at their own expense) such as a local university or perhaps an Asperger's research center somewhere in the state they live in to get things fixed up/whatever. It's pass the buck by the HMOs.

Have heard excuses like a customer being told something like Asperger's isn't very well-addressed by the professional community today - year 2010 - at all (in terms of transitioning to a workforce or to social benefits). It's been that way for a long time and traditionally it's been a person's family which would take care of it all. Next customer please.

Again, very strange - foggy - fuzzy answers from parts of the professional community which at times seem interested in only the customer's wallet and nothing else at all. Helping a customer doesn't matter as long as a person gets paid money to pretend they are helping a customer but are only running a ruse on the customer.

Thank you for sharing your experience with how your doctor views your situation. It's seems like your doctor doesn't realize that persons can slip through the cracks of the educational system and not secure a correct diagnosis until adulthood.

That's a problem with the educational system (pass the student/do not carefully assess the student, and do not diagnosis the student as Asperger's to save the school money/whatever).

Also, many parents can tend to deny a child of theirs can have a neurological challenge and some parents have intentionally not sought out early intervention and a diagnosis for a child due to a variety of reasons from embarrassment to an inability to pay for an assessment. So the child gets caught in a dysfunctional parental system and then as an adult later takes steps to clarify the situation with a correct diagnosis and good information.

Ideally your doctor would step up to the plate vs drop the football.

Part of the current social system/government system tends to view it all as everyone can work at something - whether it is washing dishes or mowing lawns or cleaning a house as a maid/butler - and the system can be slow to provide social benefits even when it's clear a person qualifies for social benefits due to something like a learning disability or a neurological challenge like Asperger's/autism/some of the many epilepsies and so on.

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SuSaNnA
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29 Jul 2010, 8:33 am

pgd wrote:
I agree with what leejosepho said above.

Unfortunately, part of medicine/doctors/health care plans - year 2010 - can engage in a strange kind of game playing with customers, that is, many doctors tend to play games especially with customers over the age of 21. Once a person is 21, it's sink or swim with some of the doctors; also, some doctors working for HMOs are told to make light of adult customer inquiries about things like Asperger's and to deny HMO benefits to them (so the HMO can preserve profits). Some HMOs do not offer testing for adults (21 and over) with ADHD, dyspraxia, Asperger's, or autism. What the HMOs do is to take the customer's money for an office visit and then say something like the customer should contact some other place (at their own expense) such as a local university or perhaps an Asperger's research center somewhere in the state they live in to get things fixed up/whatever. It's pass the buck by the HMOs.

Have heard excuses like a customer being told something like Asperger's isn't very well-addressed by the professional community today - year 2010 - at all (in terms of transitioning to a workforce or to social benefits). It's been that way for a long time and traditionally it's been a person's family which would take care of it all. Next customer please.

Again, very strange - foggy - fuzzy answers from parts of the professional community which at times seem interested in only the customer's wallet and nothing else at all. Helping a customer doesn't matter as long as a person gets paid money to pretend they are helping a customer but are only running a ruse on the customer.

Thank you for sharing your experience with how your doctor views your situation. It's seems like your doctor doesn't realize that persons can slip through the cracks of the educational system and not secure a correct diagnosis until adulthood.

That's a problem with the educational system (pass the student/do not carefully assess the student, and do not diagnosis the student as Asperger's to save the school money/whatever).

Also, many parents can tend to deny a child of theirs can have a neurological challenge and some parents have intentionally not sought out early intervention and a diagnosis for a child due to a variety of reasons from embarrassment to an inability to pay for an assessment. So the child gets caught in a dysfunctional parental system and then as an adult later takes steps to clarify the situation with a correct diagnosis and good information.

Ideally your doctor would step up to the plate vs drop the football.

Part of the current social system/government system tends to view it all as everyone can work at something - whether it is washing dishes or mowing lawns or cleaning a house as a maid/butler - and the system can be slow to provide social benefits even when it's clear a person qualifies for social benefits due to something like a learning disability or a neurological challenge like Asperger's/autism/some of the many epilepsies and so on.


The thing is, no one in my childhood had talked about , or even heard of Asperger's Syndrome.
My teachers know that there's something wrong with me, but none of the doctors suggested the name called Asperger's Syndrome

I went to find doctors that diagnose Asperger's Syndrome lately because I read books about Asperger's Syndrome, and I knew that there are far too many similarities.

I have went to many many doctors by now, and the only one the believes me is this one, yet she said she was only 99% sure, and she is NOT giving me any access to social benefits, she won't call me Asperger's Syndrome,
she told me that she is only going to write "highly suspected to have Asperger's Syndrome" on my medical history.

(I don't live in USA, so the education/ medical services might not be as good)}



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29 Jul 2010, 9:20 am

SuSaNnA wrote:
Sure, both of my parents were there when the doctor asked questions.

But I was thinking about the childhood witness issue...if a family just go and read a book about a particular disease and the 3 of them answer the doctors questions according to the book just to get diagnosed...
I mean, some people might want to cheat for social benefits, and all they need to do is to read a book right?
I mean...childhood witnesses can be an area where people tell lies right??


When I went through the diagnosis (which lasted weeks, because my family is widely scattered, and it was holiday season), the psychologist seemed to accept the validity of what he was told. He certainly did not suggest that I or anyone in my family would deliberately lie or mislead him. He did talk about unintentionally misleading answers - my mother was totally opposed to the idea that any child of hers might have an autistic spectrum disorder, and he said it needed tact to get answers to his questions, rather than her re-interpretation of them.

But again, this diagnosis entitles you to benefit on the basis that you have some functional impairment that causes a disability, and that is measurable. The childhood history does not change your current degree of disability, so it should not make a difference whether your disability is a pervasive developmental disorder confirmed in childhood or not.

I can see that there is an incentive to lie, but I think any competent diagnostician should be able to state a) that you have a qualifying disability; and b) a most likely diagnostic category.



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29 Jul 2010, 2:53 pm

SuSaNnA wrote:
But I was thinking about the childhood witness issue...if a family just go and read a book about a particular disease and the 3 of them answer the doctors questions according to the book just to get diagnosed...
I mean, some people might want to cheat for social benefits, and all they need to do is to read a book right?
I mean...childhood witnesses can be an area where people tell lies right??
Yes, there is malingering. But you have to consider: Social security disability is not very much money. You can't do very much with it--it's enough to live on, barely, in a bad neighborhood, with no luxuries and only most of what you need. The people who are seeking actual diagnosis outnumber, by a factor of a hundred or more, the people who are actually trying to get a diagnosis for their own illegal purposes.

Your doctor has most likely been burned in the past by a person who tricked her into thinking that they had an illness they didn't have. Maybe she is paranoid now.

I think it's just silly the way she won't diagnose something--with your parents there to ask them about your childhood--simply because she thinks you might be trying to trick her. It makes me want to diagnose her... paranoid personality disorder sounds about right. :roll:

Just how are you supposed to get treatment if you don't have a diagnosis on your record? You can't stay with this doctor forever; you'll move or she'll retire and then you won't have a diagnosis to show the next guy.


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29 Jul 2010, 3:51 pm

Welcome to WrongPlanet. :)


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29 Jul 2010, 8:29 pm

Your doctor is being strange. 1) being diagnosed with AS does not guarantee you SSDI/SSI or anything else. That is determined on the basis of ability to work, not just the diagnosis. And, 2) when professionals want first-hand information about childhood behavior, they interview relatives. That is, to my understanding, quite common. If your doctor needs that information, she should ask to interview relatives. Since she likely knows that that is standard operating proceedure, she's using that as an illegitimate excuse not to give you a dx.

I've not had the impression that they worry too much about relatives lying. (In my case my relatives would lie, but in the opposite direction.)

So, the doctor's argument makes no sense. I'd suspect either (as someone else pointed out), they got burned before, or IMO, they're a political zealot who has decided that most people are cheats, and so you must be, too. I can't see a good reason for the doctor to be trying to do the Social Security Administration's job for them. It's not as if SSA isn't thorogh, and hands out "easy money" (or much of it).

Don't forget that doctors are people, and are capable of being biased and unprofessional.



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29 Jul 2010, 8:32 pm

Apple_in_my_Eye wrote:
Your doctor is being strange. 1) being diagnosed with AS does not guarantee you SSDI/SSI or anything else. That is determined on the basis of ability to work, not just the diagnosis. And, 2) when professionals want first-hand information about childhood behavior, they interview relatives. That is, to my understanding, quite common. If your doctor needs that information, she should ask to interview relatives. Since she likely knows that that is standard operating proceedure, she's using that as an illegitimate excuse not to give you a dx.

I've not had the impression that they worry too much about relatives lying. (In my case my relatives would lie, but in the opposite direction.)

So, the doctor's argument makes no sense. I'd suspect either (as someone else pointed out), they got burned before, or IMO, they're a political zealot who has decided that most people are cheats, and so you must be, too. I can't see a good reason for the doctor to be trying to do the Social Security Administration's job for them. It's not as if SSA isn't thorogh, and hands out "easy money" (or much of it).

Don't forget that doctors are people, and are capable of being biased and unprofessional.


Agreed


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SuSaNnA
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29 Jul 2010, 11:02 pm

Apple_in_my_Eye wrote:
Your doctor is being strange. 1) being diagnosed with AS does not guarantee you SSDI/SSI or anything else. That is determined on the basis of ability to work, not just the diagnosis. And, 2) when professionals want first-hand information about childhood behavior, they interview relatives. That is, to my understanding, quite common. If your doctor needs that information, she should ask to interview relatives. Since she likely knows that that is standard operating proceedure, she's using that as an illegitimate excuse not to give you a dx.

I've not had the impression that they worry too much about relatives lying. (In my case my relatives would lie, but in the opposite direction.)

So, the doctor's argument makes no sense. I'd suspect either (as someone else pointed out), they got burned before, or IMO, they're a political zealot who has decided that most people are cheats, and so you must be, too. I can't see a good reason for the doctor to be trying to do the Social Security Administration's job for them. It's not as if SSA isn't thorogh, and hands out "easy money" (or much of it).

Don't forget that doctors are people, and are capable of being biased and unprofessional.

She (the doctor) said that according to the law of Taiwan, she has to observe the child when young in order to give a definite diagnosis..
I'm not very sure whether it was her that doesn't want to give me a definite diagnosis, or it was the Taiwanese law that was totally lame.

I'm going to Hong Kong in a few weeks, but my experience with Hong Kong doctors was that they always say "You don't look like one with Asperger's Syndrome."



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30 Jul 2010, 6:03 am

So maybe in Taiwan, they automatically give you benefits if you have AS? I find that very odd; most people with AS don't need them.

If she puts down "strongly suspected to have AS" on your record, and it goes with you to your next doctor, that might be nearly as good. You could ask her to also put down a note that the ONLY reason she couldn't diagnose you is that she is legally forbidden to diagnose someone whom she did not personally examine as a child. Otherwise, the next doctor might believe her diagnosis to be doubtful and you'd have to go through the whole evaluation again.


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