Aliens, Chromosomal Disorders, & Lysosomal Storage Disorders OH MY!

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Sanvean17
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I am hugely into UFOs & the like, mostly claimed non-fiction but I also love science-fiction too (the X Files! Ooh, Mulder!) I'm on alien-ufos.com under the same SN, new there but love it. Very active site, lots of fun whether you take it as fact or fiction (add me!)

I'm on several sites for various chromosomal disorders (Angelman Syndrome, Retts, Fragile X) and find the similarities & differences to be fascinating. I also want to learn more about these conditions in hopes of working with such individuals and being able to give them the respect and care they deserve.

This also lead me into different degenerative disorders, mostly Lysosomal Storage Disorders like Tay Sachs, Sandhoff Disease and similar illnesses like Alexander Disease. Absolutely tragic, but again, fascinating.

I, like many diagnosed, have also become extremely interested, generally, in learning about autism. I am on WrongPlanet.net under a different SN. Awesome site for those who haven't been there, although I have become less active.

I also love the Smashing Pumpkins. And sushi. But those are not special interests. I just like them a whole lot. THE END.

Sarah - Age 20 - Clinically Diagnosed @ Age 17 - Asperger's Syndrome

itsthelatte
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Apparently the world finds this too much to ask for. My superior intellectual skills (courtesy of this autism disorder) justify nothing. I deserve love and life as much as any other woman.

Have you seen the world today? It's a mess. With the way the United States economic and sociocultural populace is set up, it may look like we have no chance to satisfy our meager demands.

The problem you describe is one that is, unfortunately, more widespread than you may realize. It's pretty disheartening, but does not make the pursuit of one's dream futile.

Being intelligent puts you in a silent majority of people that are working, striving and are busy enough that they're not out on the streets, on political punditry shows, and at corporate-sponsored protests complaining about topics they know little about - we're too busy actually getting shit done.

If you think true, quality love and life comes easy for others without Autism/Asperger's Syndrome, I would heartily ask you to think again and observe our fellow citizens. Our divorce rate is remarkably high. Many marriages are unhappy ones (not saying all of them, just in case this offends anyone). People fall for the illusion that if you love someone you are required to have sex, regardless of how you feel about it. The groupthink accepted by the average American citizen looks satisfying on the outside, but it eats away a person on the inside.
Individual rights, thoughts and freedoms - TRUE freedoms - are where real love and life comes from, not from antiquated social constructs or tempermental cultural norms. It may not feel 'normal' to you, but Autism/Asperger's Syndrome - just because it violates said norms/constructs - is in no way immune to love and a quality life. Both can and will be achieved, but possibly on a different, less traveled path.

Rather than following the same, boring footsteps of others, many of us choose to follow a more unique way. It isn't easy; but then again, nothing of significant intangible value rarely is.

I don't mean to criticize or lecture you in any way; just trying to explain my position - and maybe others as well.

Regards,

Spencer

"Unless someone like you cares a whole awful lot, nothing is going to get better. Its not." - The Lorax by Dr. Seuss

Sanvean17
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Apparently you focused on my signature (no biggie). I am aware that everyone has their aches and pains in life, but I feel that I don't even get the chance at life - or have a life - or just totally fuck it up. I recall situations and completely connect them to my natural ways. This goddamn blindness of mine almost ruined (I'm not sure yet) my one chance at teenage love (or lust - don't matter to me.) Because I don't understand things I know most other females my age would. And that's why I am angry, and that's why it's okay to be angry. I didn't ask for this stupid syndrome. I wish I felt like there was something worth my pain. But I don't. I don't have a god to depend on. I'm too old to have my family fix it. I don't have any friends to help me cope. I have to deal with this on my own. Others, including the typical may FEEL the same things that I do, but their REASONS are often not.

Sarah - Age 20 - Clinically Diagnosed @ Age 17 - Asperger's Syndrome

Sharon
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I'm going to make a confession here -- don't think I've ever shared this publicly?  There was a time in my life (not so long ago) when I felt, for the most part the way you do Delores.  

It took involving myself in various experiences and surrounding myself with other moms & females on the spectrum before I found my mind set changing.  I currently have more smiles than frowns, and enjoy a more positive self image.

I don't know where to take my comment at this point - or how to expand on what I was going to say.... let me process this, and then I'll return to continue.

Spencer - I've always appreciated your logic and self expression.  You have a great way of explaining yourself and putting your thoughts out there...  I'm still learning in that department. Cool

Sanvean17
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Thanks for the words, Sharon. I know your intentions are good, and I'm glad you found a better place.

But as of now, I'm ready to lose control and accept the consequences. I just want to be normal. I just want to happy.

And my goddamn libido is driving me NUTS.

:-D

Sarah - Age 20 - Clinically Diagnosed @ Age 17 - Asperger's Syndrome

Sanvean17
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Is it a smiley face or a penis? You decide.

Sarah - Age 20 - Clinically Diagnosed @ Age 17 - Asperger's Syndrome

itsthelatte
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Apparently you focused on my signature (no biggie). I am aware that everyone has their aches and pains in life, but I feel that I don't even get the chance at life - or have a life - or just totally fuck it up. I recall situations and completely connect them to my natural ways. This goddamn blindness of mine almost ruined (I'm not sure yet) my one chance at teenage love (or lust - don't matter to me.) Because I don't understand things I know most other females my age would. And that's why I am angry, and that's why it's okay to be angry. I didn't ask for this stupid syndrome. I wish I felt like there was something worth my pain. But I don't. I don't have a god to depend on. I'm too old to have my family fix it. I don't have any friends to help me cope. I have to deal with this on my own. Others, including the typical may FEEL the same things that I do, but their REASONS are often not.

My apologies; I did focus on your signature when the purpose of your original post was not about that subject. I am sorry.

However, since we are on the subject...
Exactly how ARE you supposed to feel? Who states what you're supposed to feel, what love is supposed to be like, and what you're supposed to understand?

Everyone has pain. Some more than others; many hide it well under tangible items and well-managed emotions.
Life can't - and should not - be the same for everyone. To demand that is to demand homogenization, something that robs us all of individual thought, experience and uniqueness. Loneliness, suffering and the pain you feel are a part of that, but the reward of not following the herd into the same predictable pattern is priceless.

We are at a point in our lifetime that demands a more open perspective towards others due to the fact that we are more diverse in more areas than ever before. Unfortunately, we still encounter many, many people who believe unconventional people (especially women) to be strange deviants, of which do not fit into their antiquated sociocultural norms.

It's not easy being yourself anymore.

But as of now, I'm ready to lose control and accept the consequences. I just want to be normal. I just want to happy.

And my goddamn libido is driving me NUTS.

:-D

What is normal?

Happy is one thing; we all know that happiness is a concept of which the definition lies in the definer - namely, the one who pursues said happiness. This proves that happiness does not come in the same exact form for everyone. What makes one person happy (pink bunny slippers) will not necessarily make another person happy (headlight house shoes). Therefore happiness is not a static concept/theory/idea/whatever - but a dynamic one, i.e. constantly changing, in flux from one person to the next (possibly changing inside the individual alone as well).

Stay with me here...

Even though we understand happiness as a dynamic, fluid concept, normal is seen by many - if not all - Americans as a static concept, something that you can compare yourself to as a way of 'normalization' and definition among the society.

Yet the concept of static normalcy is false, as long as societies and cultures progress over time.
For example, During the 1600s, churning your own butter was the 'norm'. So was making your own clothing, food and drawing up water from a well you drilled. A horse was your primary mode of long-distance transport, and your immune system was the most advanced health care plan at the time.
400 years later, and all that has changed. Churning your own butter is a distant memory, very few people still make their own clothing, grow their own food, or even have a well on their property, much less use one. Health care has grown into an entire industry (rant if you want to) that has saved lives from what we now call common diseases such as pneumonia, bronchitis, and even from countless infections.
If what was normal in the 1600s remained static, it would be the norm today - and society wouldn't accept such 'dark magic' innovations, including the internal combustion engine, electricity, aluminum, the civil rights movement (not to mention the disability civil rights movement), and much more.
The point is, normal is truly a dynamic concept, regardless of how many empty-headed humans tell you otherwise. What is strange today will be completely normal tomorrow. Remember when the internet and the computer was for nerds/geeks only? What about now?

A lot of people just accept the falsity that normal is this static concept of what society believes it is...as of right now. This is where the contradiction is found. Normal cannot be applied to the human race since we evolve. Unless we reach a plateau of evolution - or we just stop evolving - there will not be a 'normal' template to draw from on a permanent basis. It simply cannot exist; it is not logical.

I apologize for the rant, but I feel very strongly about the whole idea of normal and the way our culture incorrectly uses it. Normal can be used for tangible items - not for people.

Oh, and on the libido thing - it doesn't get any better. Sorry.

P.S. It's a smiley face. ;P

"Unless someone like you cares a whole awful lot, nothing is going to get better. Its not." - The Lorax by Dr. Seuss