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FXS Awareness Thread


Posts: 399

ATT: Aspies of Sociopath world.

Please get yourselves tested for Fragile X Syndrome. Especially you Josh, you have classical FXS facial features.

Kennedy Krieger Instiute

http://www.fraxa.org/

https://en.wikipedia.org/wiki/Fragile_X_syndrome

Posts: 399
FXS Awareness Thread

Fragile X Syndrome sufferers often display quite aggressive and manipulative behaviors. Just like we see in Autism, this kind of socially inappropriate behavior is caused by frustration and misunderstanding.

When the symptoms of FXS are properly managed, the FXS sufferer may enjoy a pleasant and productive quality of life (they can drive a car, complete study, pursue a career, manage their own finances, maintain relationships, ect.)

Posts: 25
FXS Awareness Thread

i don't have autism go fuck your self

 

and it has nothing to do with the persons face

Posts: 399
FXS Awareness Thread

i don't have autism go fuck your self

Why the harsh tone? You are one of my sociopath world friends and I am worried about you, that is all.

I do not believe that you do have Autism or Aspergers (which is Autism). FXS only resembles Autism.

 

and it has nothing to do with the persons face

Wrong, there are facial and body traits associated with Fragile X Syndrome, go do some research.

I would not want you to see you slowly die from an untreatable form of Parkinsons disease and comorbid Alzheimer disease. If you got yourself tested for FXS, you could rule out some of the possibility of that happening.

Posts: 408
FXS Awareness Thread

I'm sure this thread was created just with the intention of trolling Dex.

However, I'd never heard of this condition before, and reading about it explains literally everything I'd ever wondered about my brother. So thank you for posting it.

Posts: 399
FXS Awareness Thread

You are welcome Gypsy. I am glad you have found my contribution useful.

I did not know about Fragile X Syndrome. I was not actually trying to troll Josh, ironically though, the making of this thread was inspired by his pictures and his curious behavior.

Being somewhat new to the forum, when I first saw Joshuas pictures I thought "that is one really odd-looking kid." I had read that Josh was AS and ADHD, but at the time my knowledge of those mental defects was quite limited. I did about a months study about the defects, but I could not find anything about physical traits associated with Autism (poor eye contact and weird body language excepted). Autism is sometimes comorbid with Down syndrome and Cerebral palsy but I could not find any solid explanation for Joshuas queerness.

Finally I found FXS, eureka! His pictures and behavior often make me wonder. What happens if he does have FXS? I am sure that none of us would want to make fun of a retarded kid.

FXS really is a fascinating genetic defect.

Posts: 408
FXS Awareness Thread

It is indeed.

I've been accused before of being politically incorrect when saying I'm a fantastic aspie-spotter, as most of those kids seem to have the same face shape. But if this is true then there could actually be something in that.

I'm surprised I've never come across this before because the description fits my brother to a t, right down to the stuff I didn't even think could be related, like frequent ear infections. He has a diagnosis of aspergers and dyspraxia, although I've always wondered if there wasn't some underlying cause which could explain both conditions. It's pretty obvious he has some intellectual difficulties that can't be explained by aspergers alone - far from the stereotype of autistic computer geek, he can't even work the TV remote, and doesn't really understand the internet at all. He loves lego, and doesn't seem to be aware of his own existence. I envy his contentedness in some ways. Physically, he is the spitting image of Adam Lanza in that creepy photo of him with the long face. So much so, in fact, that strangers have felt the need to comment on it (and he doesn't even live in the US).

It probably comes from my mother. I never tell anyone about her learning difficulties because luckily I don't need to - she manages to hide it well with a combination of dizyness and bipolar. But she can't actually tell the time, despite many attempts to teach her, and she has trouble counting past her fingers.

Obviously I don't want retardedness to be the explanation for my family's genetic weirdness. But, if it is what it is then I might as well own to it. It's not like i have any control over my own genetics.

Sadly it does answer some of my own questions too. I read that female carriers have problems with low ovarian reserves and infertility. My ex and I recently decided to call it a day after 7 years of trying and my being told I had the ovarian reserves of a 40+ year old (I am in my 20's). But, if it's true that any child I had would have a 50% chance of inheriting this thing then it's clearly a blessing in disguise. There is no way I would want to raise a retarded child.

I would love to know for sure if this is the reason. It wouldn't change the way I think about myself or my family, but it would definitely give me the peace of mind to move on from the whole not having kids thing with no guilt or regrets. But then I'm not sure it's the kind of thing I would want on my medical records. And I wonder if it should have been picked up already. I had genetic screening done when we went for IVF and they didn't mention anything, and my 23andme results didn't say anything about it (although it did give me a nearly 50% chance of getting alzheimers at some point, and that's supposed to be related).

I wish Alia was still posting, or someone with medical knowledge. We need a resident doctor here. I'd love to ask more questions about this, but don't fancy going to my GP saying 'Hey, I think I might be a bit retarded...' :/

Posts: 7645
FXS Awareness Thread

 

by Gypsy

I wish Alia was still posting, or someone with medical knowledge. We need a resident doctor here. I'd love to ask more questions about this, but don't fancy going to my GP saying 'Hey, I think I might be a bit retarded...' :/

I don't think this place needs a resident doctor at all. And anyone who claims to be a doctor is not a certainty without proof of their medical degree. Strangers online can claim to be anything and any medical advice they give could be false or misleading.

I don't see why talking to your GP would be an issue. There are ways to express your concerns without being so blunt and forthcoming if you're worried what your GP might think. For example, use the words 'learning disability' instead of 'retardation' and mention that it's already affected members of your family, so your concerned if there's a genetic impact.

Your GP is not going to laugh at you.

Posts: 408
FXS Awareness Thread

I don't think this place needs a resident doctor at all. And anyone who claims to be a doctor is not a certainty without proof of their medical degree. Strangers online can claim to be anything and any medical advice
they give could be false or misleading.

True dat. But if someone has a long history of making accurate posts about a topic then they clearly know their shit, which is good enough for me.

Your GP is not going to laugh at you.

That's not really what I'm worried about. I think it's generally advantageous to keep medical records as clean as possible, as you can't assume they're private nowadays. In the country where I currently live, employers can even request a copy before they make you an offer of a job. And there doesn't seem to be much advantage in being associated with that condition, even if I'm just a carrier.

 

Posts: 7645
FXS Awareness Thread

Helena is a troll. Nothing more. He/she/it is certainly no doctor and more fool you for thinking she is.

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