My cardiologist says they should just lock me up at Hopkins

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Hello, I'm 31 years old. I've known since I was two that I have Marfan syndrome, and that has pretty much clouded any other medical diagnosis in my life. Everything that happens medically or psyhologiclaly has alawys been "must be Marfan related" or "because of Marfan" or "because of stress because I'm a Marfan."
I've always known, however, that there was something "different" about my brain and my emotional make-up.
Last year, my wife and I moved to a new city, away from either of our families for the first time, and it's allowed us the freedom to look more at ourselves. That, combined with learning what medical and psychological issues our children have, has made me aware of two things about myself:
I have Asperger's and I have Celiac Disease. (When I told my longtime cardiologist this back in the fall, he said what I paraphrased in the subject line).

I've heard about Asperger's different times over the years, and, each time, it sounded more like me. My wife and I went to a counselor a few years ago--primarily to deal with some extended family issues--and I talked about some of my "quirks" that have always made me wonder. For example, I have always gotten a horrible taste in my mouth when I see a certain shade of orange/peach/pink (it's the color of some street lights). She was baffled by some of these things, and I now know they're symptomatic of Asperger's.

Last fall, I saw the _House_ episode about autism where they suspect House of having Asperger's, and the details they revealed there spoke to me, esp. what House said about "speaking autistic."

I began to do more thorough research, took the Aspie Quiz, etc, and found out all sorts of obscure things about Asperger's that fit me to a "T." Tried to talk to my mother about it, and she said, "You don't have Asperger's. You just talk too much." (Similarly, when my wife told her family she was diagnosed with ADD, they said, "YOu don't have ADD; you're just lazy).

My mother thinks I went "nuts" after my open heart surgery, when they took me off beta blockers. My wife and I see it as the opposite: I was on such high BP medicine in my childhood and teen years that it sedated me out of hyperactivity and autistic rages.

Our son was in speech therapy for a while-just a delay, no signs of any serious disorder, but we try to get whatever help we can--and, when the various people would evaluate him for autism spectrum, there were a lot of questions that i'd answer with, "He doesn't, but I do," or "He does, but I don't."

We're also pretty sure our 6 year old has Asperger's. My example: she had eye surgery 2 weeks ago. Her comfort toy was a rubber snake she calls "Snakey". My comment: "Little girls play with dolls and cuddle with them. Little boys play with snakes. Little girls with Asperger's play with snakes, call them 'Snakey' and hug them." (When I was a little boy, I played with dolls and stuffed animals and had battles with them).

I could go on and on about the reasnos I think I have Asperger's, but I won't.

As for the rest of my life: DW and I celebrate our 8th annversary this July. Still as madly in love as we were when we got engaged the same day we met, 8.5 years ago. We have four kids living: Allie (6, Marfan and Asperger's or ADHD), Gianna (4, Celiac and anxieties), Josef (2 Celiac and rather OCD), and Clara (1, Celiac and too young to tell). I'm an adjunct English instructor at two colleges.

Welcome to Wrongplanet

I have never encountered getting a horrible taste in my mouth because of seeing a certain shade of orange/peach/pink and honestly have no idea why that would be associated with Asperger's Syndrome.

There doesn't seem to be anything in this original post that specifically resembles Asperger Syndrome.

I played with action figures into my teen years and I'm 22 now. I also feel I have alot of Asperger's traits and do have Asperger's my sister did the research and I've then since have been researching it plus I found WP YA! My Psychiatrist says I still have Bipolar and is negative about AS since it can't be fixed with pills so I think I have Asperger's based on what I've read here and looking at my behavior from the past. That's enough for me.

To WrongPlanet!! !


You say you have Marfan's? How tall are you. I know someone who may have Marfan syndrome. He stands at 6'9"
and has very prominent veins on his arms and legs.

Thanks for the welcomes!

Richie,

I'm 72 inches even. Marfans don't have to be "really tall"; just taller than their non-Marfan parents. My parents were both 5'7 (though my mom has bad osteoporosis and has lost some inches). My wife is 5'11", and our daughter will probably be well over 6 feet tall.

MacYavel83,
Exactly. When I read about synaesthesia, I was like, "That happens to me!" But no one else seems to have even heard of it.

Avengilante,
Sorry. I was trying to be more biographical than diagnostic, but thanks for asking
1. I talk too much. When I was a kid, people told me I took to long to get to my point, so I learned to talk fast. In the words of my great-uncle, when I was 8, "A half an hour ago, I asked that kid a question, and he just finished the answer. I'm never asking him a question again."
2. I am clueless about social cues, except the ones I've read about, and those I exaggerate. Making eye contact gives me a headache. I know to try to do it, and then I stare when I do.
3. I've always had very atypical interests--in fact, I prefer to like what is "weird" or "different." I'm heterosexual, but have many interests society considers "effeminate"--Barry Manilow, soap operas, musicals; I'd rather watch a romantic comedy than an action flick. I hate sports. I liked to wear pink when I was a kid--just because it was different and I didn't see what it mattered what colors people wear.
4. In the words of my father: "Anytime you take an interest in something, you get all obsessed about it. You can't just get a dog; you get a whole room full of dog-stuff. You can't just like Andrew Lloyd Webber; you have to buy every one of his CDs."
5. I have very few friends. The friends I do have are all much older than I am.
6. I get horribly overwhelmed in crowds or in situations with a lot of auditory input.
7. When I get stressed or overwhelmed, I either fly into a rage or else I shut off and try to "hide".
8. Whatever the conversation is, I will turn it to my interests. I don't care if you're interested; I will tell you every detail about some movie I watched or the history of a G I Joe character (including multiple continuities and the lives of related characters), etc.
9. I'm very particular about the clothes I wear. I find clothes that are slightly uncomfortable intolerable.
10. I am very obsessive about having things "my way"; not in an OCD sense of anxiety (e.g., I'm not afraid of getting sick or getting robbed or something); I just hate havign people mess with my stuff. I hate being in situations where I have to follow arbitrary rules that don't make sense to me.

Should I go on?

hi GodsGadfly

ie the taste in mouth with street lights - it's a synaesthesic thing - also aspergic (as far as I know) - basically cross wiring in the brain - you might want to check out James Wannertons website - google the name along with synaesthesia and that should bring it up - hope it is of help/ interest
oh and by the way I get it too - but not as intensly as some folks,

5th element

5thelement,
Yeah, exactly. I never heard of synaesthesia till my research of Asperger's this fall, and was like, "Wow!" That's the most obvious example, because it actually makes me nauseus, and it's the only time I think of it negatively. But it's also what makes me artistic: When I listen to music, I can "feel" it more than other people do, the way a musician is *supposed* to, but other people don't often understand when I try to explain it. Sometimes, I can even "see" the music.

Richie,
That's something my wife was commenting on after we attended a Special Needs picnic this weekend: a lot of kids with Asperger's/Autism tend to look a bit "Marfanoid," too.

GodsGadfly

i.e the synaesthesia and Marfanism and aspergers connections - I have a form of EDF - Ehlers Dahnlos - loose joints, stretchy/ elastic skin, etc ( related to marfanism) and i have repeatedly noticed that these 'symptoms' ( for want of a better word) often tend to go together - have noticed in people that i have related more strongly to, or have gravitated towards and thought 'aha - there we go again - same groupings!' - so from direct observstion I believe there is definitely a connection between these three things - but so far I haven't come accross any official research connecting it all. Anyway, just thought I'd let you know my thoughts are on the same lines. One other thing - with the bad tastes in the mouth I know both myself and James wannerton who I mentioned in the previous post use sweets or chewing gum to lessen the nasty tastes that are triggered by other stimuli, whether audio/ olfactory etc - You may have already tried this but if you haven't it's worth having a favourite or soothing flavour sweet at the ready for those 'nasty taste moments' - i find violet flavoured sweets particularly helpful - just a suggestion - whatever works for you though

p.s. - have also encountered the 'but you can't possibly have aspergers etc ' from family members, so i know where you are coming from - it's frustrating but keep going with what your instincts and observations tell you - well, that's my advice.

hoping not to sound too 'preachy'
5th

Hi!

Welcome to Wrongplanet!

I hope you enjoy posting here!

It's just a neurotypical trying to be superior.

Lau, Thanks! I think that Bozewani was referring to comments like "You can't possibly have Asperger's."