Fell in love with girl with Lujan-Fryns Syndrome

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south_paw
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18 Apr 2019, 3:40 pm

Have you considered that you may have MSBP?



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18 Apr 2019, 3:54 pm

I was reading through some on-line articles, when I encountered this one:

MSbP, or Munchausen Syndrome by Proxy, also known as Factitious Disorder Imposed on Another (FDIA or FDIoA) is when someone falsely claims that another person has physical or psychological signs or symptoms of illness, or causes injury or disease in another person with the intention of deceiving others. People with this disorder present another person as sick, injured or having problems functioning, claiming that medical attention is needed.

Source: This Mayo Clinic Article.

I'm not making a diagnosis, mind you ... just passing along some data.


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18 Apr 2019, 6:32 pm

I read up on this syndrome some.

Almost invariably, there is some sort of intellectual disability within this syndrome. Mostly "mild to moderate." Rarely, "severe." It is seen as being "part and parcel" of the disorder, in fact.

This person you mention doesn't seem to have any intellectual disability at all.

Moreover, it's seen as being at least rather rare in women. The only images that come up in relation to Lujan-Fryns Syndrome when conducting an Internet inquiry are those of men with the characteristic facial features.

It is not like Turner Syndrome----where only women develop it---but it's close.

Also: I would let HER tell you she has any sort of disorder. Nothing wrong with speculating----but, like others said, and even you said, don't mention it to her.



AnneOleson
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18 Apr 2019, 8:04 pm

How did you discover that she is autistic?



Dog1
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18 Apr 2019, 8:08 pm

south_paw wrote:
Have you considered that you may have MSBP?


And just by reading my post by itself with no other input, you have no reason to reach that conclusion.

Again, I'm sorry for upsetting you.



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18 Apr 2019, 8:11 pm

Fnord wrote:
I was reading through some on-line articles, when I encountered this one:

MSbP, or Munchausen Syndrome by Proxy, also known as Factitious Disorder Imposed on Another (FDIA or FDIoA) is when someone falsely claims that another person has physical or psychological signs or symptoms of illness, or causes injury or disease in another person with the intention of deceiving others. People with this disorder present another person as sick, injured or having problems functioning, claiming that medical attention is needed.

Source: This Mayo Clinic Article.

I'm not making a diagnosis, mind you ... just passing along some data.


So you just want to randomly guess or imply something without helping me because you're upset?

I'm really sorry that I upset you. I just came here seeking knowledge.

I hope my apology is sufficient.



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18 Apr 2019, 8:21 pm

IsabellaLinton wrote:
From the positive descriptors you've listed it sounds like this young woman is tall and slim, with common personality traits (sometimes shy, sometimes more aggressive). You already mentioned that she might be autistic, which would explain her low frustration threshold. Please don't approach her with a medical diagnosis which is based even partially upon "But, you have a prominent forehead!", "I'm not sure if you are physically deformed", or "You're really slim!" 8O That would be extremely hurtful and make her feel very judged.

Nothing else that you've said seems to match the condition you describe.

Please bear in mind that it's impossible to determine whether someone has an eating disorder by looking at their weight. We know not to judge or label people who are overweight, and the same goes for people who are slim. I know you didn't label her with an eating disorder, but be cautious with that thought.

You ask about her "symptoms". I don't see any symptoms here of anything. She's a young woman with a personality no different than most people, especially if they're on the spectrum.


She's not really tall, only 5'7.

I discovered the Marfan Syndrome article purely by accident because I saw pictures of people with the same facial features and shape as her and found it was linked with Autism at times.

She has a lot of Autistic features as well.

Also, I apologize for using the word "symptoms" - I was really tired from pulling multiple shifts at work all week, and I wanted to get around to looking into this.

I wouldn't tell her about this, especially since I wasn't sure about my hypothesis and wanted to glean information from my fellow Aspies here, since you guys would have a lot more experience with these subjects.



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18 Apr 2019, 8:40 pm

kraftiekortie wrote:
I read up on this syndrome some.

Almost invariably, there is some sort of intellectual disability within this syndrome. Mostly "mild to moderate." Rarely, "severe." It is seen as being "part and parcel" of the disorder, in fact.

This person you mention doesn't seem to have any intellectual disability at all.

Moreover, it's seen as being at least rather rare in women. The only images that come up in relation to Lujan-Fryns Syndrome when conducting an Internet inquiry are those of men with the characteristic facial features.

It is not like Turner Syndrome----where only women develop it---but it's close.

Also: I would let HER tell you she has any sort of disorder. Nothing wrong with speculating----but, like others said, and even you said, don't mention it to her.


Thanks for your help, kraftiekortie.

You made some really good points, so Lujan-Fryns can be ruled out.

I think I assumed that it was Lujan-Fryns because of her Marfan features along with the Autistic-qualities.

I've been seeing this girl long-distance for three years now and she implies at times that there's something wrong with her but never really talks about it.

I never ask and I never knew about Marfan Syndrome until I saw some pictures of people with similar characteristics as her.

She makes a point of pushing everyone away, but lately she's been telling me when she will come on later to chat and has been opening up to me.

I was trying to understand what her situation is without being intrusive and asking her, so I came here for expert advice, though a few of the responses here have left me feeling depressed.

I discovered I was an Aspie because of her, and grew to love the Aspies here on WrongPlanet.

I've actually been here before, but I noticed there aren't really many threads on Marfan Syndrome.

I just really don't want to give up on her.

I've been really tired lately (hence the woodenness of my opening-post)

I was hoping to come here and get lots of support and camaraderie and I thank you for all your help.



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18 Apr 2019, 8:56 pm

AnneOleson wrote:
How did you discover that she is autistic?


I actually didn't know what Autism was before I met her.

When I first met her, she was socially-withdrawn and told me she hated people and wanted to be away from everyone.

She also said that she didn't become fond of others and only came online to practice communicating with people.

On a hunch, I looked up Autism, and also discovered articles on Alexithymia and saw parallels with her traits and what was listed there.

Then I came to WrongPlanet and read threads where Aspies described the same features and after a while came to understand that she was an Aspie.

I also discovered around the same time that I also have some Aspie traits, so I continued to come here to learn more.

Lately I've been trying to understand her medical situation but didn't want to approach her about it out of respect, so I turned to my fellow Aspies for knowledge and advice.



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18 Apr 2019, 9:00 pm

Please don't diagnose anyone with autism by reading the internet or by guessing. A proper identification takes hours of clinical assessment and observation by specialists with doctoral degrees, and her developmental history since birth would be required. You haven't even met this woman. There can be any number of reasons for a person to have social difficulties. Furthermore, "Aspergers" or "Aspie" is not even a diagnostic term now.



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18 Apr 2019, 9:23 pm

IsabellaLinton wrote:
Please don't diagnose anyone with autism by reading the internet or by guessing. A proper identification takes hours of clinical assessment and observation by specialists with doctoral degrees, and her developmental history since birth would be required. You haven't even met this woman. There can be any number of reasons for a person to have social difficulties. Furthermore, "Aspergers" or "Aspie" is not even a diagnostic term now.


Aren't there many people here on WrongPlanet who are self-declared un-diagnosed Autistics, though?



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18 Apr 2019, 9:35 pm

Dog1 wrote:
IsabellaLinton wrote:
Please don't diagnose anyone with autism by reading the internet or by guessing. A proper identification takes hours of clinical assessment and observation by specialists with doctoral degrees, and her developmental history since birth would be required. You haven't even met this woman. There can be any number of reasons for a person to have social difficulties. Furthermore, "Aspergers" or "Aspie" is not even a diagnostic term now.


Aren't there many people here on WrongPlanet who are self-declared un-diagnosed Autistics, though?


There are, but those people are self-diagnosing THEMSELVES. They know their personal developmental history, and all of their strengths or weaknesses. They know their private selves, their thoughts, their feelings, and all their secret (often masked) behaviours which have evolved over many years. These members usually read countless books and take multiple tests online, before even considering they might be on the spectrum. They get opinions from doctors or therapists who may not be qualified to perform an assessment, but are knowledgable enough to render an opinion or referral.

People who self-diagnose are also aware of all the co-morbid conditions they may have (PTSD, Agoraphobia, Bipolar, etc.) and the reasons for their social difficulties. They know the genetics of their families, and they know what teachers have written or said about them since they were very young. They are able to assess their own lives because they are the person in question.

In short, you aren't her. You cannot self-diagnose someone else.

Many people wait years for professional assessments because of long wait lists, especially for women. I know that you mean well, but it's impossible for someone to say "she has autism" about another person. If you are genuinely confident that this friend appears to be on the spectrum, please suggest it to her .... but the diagnostic process is hers alone.



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18 Apr 2019, 10:35 pm

I suggest you focus more on whether there is relationship potential between you and this young lady, and less on her possible medical conditions. You claim you are in love with her, but I'm not hearing anything indicating that feeling is reciprocated. If it is reciprocated, you can gently ask about conditions she has already alluded to. If it is not reciprocated and is never going to be reciprocated, then her medical conditions are none of your business.

Quite possibly you aren't sure if it is reciprocated. I am suggesting you diagnose whether there is any there there, and not what symptoms she may or may not have.

If you are indeed autistic, looking up rare and obscure diagnoses online is probably much more comfortable than plumbing the depths of your own and your lady friend's hearts. But it is the wrong way to go.


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18 Apr 2019, 10:36 pm

Honestly, I don’t feel he should even ask.

Let her tell him.

Not every autistic person wants to avoid people.

Aspies want to socialize....but they are awkward in doing so.



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18 Apr 2019, 10:56 pm

IsabellaLinton wrote:
Dog1 wrote:
IsabellaLinton wrote:
Please don't diagnose anyone with autism by reading the internet or by guessing. A proper identification takes hours of clinical assessment and observation by specialists with doctoral degrees, and her developmental history since birth would be required. You haven't even met this woman. There can be any number of reasons for a person to have social difficulties. Furthermore, "Aspergers" or "Aspie" is not even a diagnostic term now.


Aren't there many people here on WrongPlanet who are self-declared un-diagnosed Autistics, though?


There are, but those people are self-diagnosing THEMSELVES. They know their personal developmental history, and all of their strengths or weaknesses. They know their private selves, their thoughts, their feelings, and all their secret (often masked) behaviours which have evolved over many years. These members usually read countless books and take multiple tests online, before even considering they might be on the spectrum. They get opinions from doctors or therapists who may not be qualified to perform an assessment, but are knowledgable enough to render an opinion or referral.

People who self-diagnose are also aware of all the co-morbid conditions they may have (PTSD, Agoraphobia, Bipolar, etc.) and the reasons for their social difficulties. They know the genetics of their families, and they know what teachers have written or said about them since they were very young. They are able to assess their own lives because they are the person in question.

In short, you aren't her. You cannot self-diagnose someone else.

Many people wait years for professional assessments because of long wait lists, especially for women. I know that you mean well, but it's impossible for someone to say "she has autism" about another person. If you are genuinely confident that this friend appears to be on the spectrum, please suggest it to her .... but the diagnostic process is hers alone.


I understand. Autism is treated very seriously here and with respect as it should be.

I apologize though - I meant to say that I've seen people diagnose themselves basically using websites with descriptions of Autism - but also I've seen people also refer to other people they've met as Autistic without a professional-diagnosis.

I've known this girl for three years and I'm the only person she's opened up to - as she seems to hate everyone else.

The characteristics are there, and while some people have assumed she's crazy - I know she isn't.

She's socially-withdrawn, has trouble communicating, can't express her emotions, loves to read books all the time and also has the Marfan-features I mentioned.

She is a lot like the wonderful people on this site, who are Autistics.

I have to be honest - I'm really here because I don't want to give up on her.



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19 Apr 2019, 8:29 am

Dog1 wrote:
Aren't there many people here on WrongPlanet who are self-declared un-diagnosed Autistics, though?
Yes, and they have been referred to as "Poseurs".

I usually tell them that their "diagnosis" is not official unless given by an appropriately-trained and licensed mental-health practitioner.

Somehow, this offends them.

I don't know why.


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