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Arevelion
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01 Sep 2018, 7:28 pm

Part of why I like this forum is that it radically expanded my idea of what it means to be autistic, and I would love it if it could be expanded further. What does autism mean to you? What do you imagine when you hear the word? How would you define it?



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01 Sep 2018, 9:14 pm

To me, there is no one meaning of autism. Autism is a collection of traits. It is the way my brain is wired. It means being extremely sensitive to the world and confused by social/emotional things. Autistic traits can manifest differently in everyone. I notice that some people seem to "blame" all of their autistic traits on one underlying trait. For example, Temple Grandin says that for her autism mainly means thinking in pictures. Others say that their autism mainly means having sensory issues. Etc.


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Arganger
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01 Sep 2018, 9:37 pm

Me.

It is many types of differences the world hasn't ever built around. Being highly specialized to fill certain roles.

We are bricks, that cannot fill the role of mortar and would be broken if we try. The Nt's are that mortar, flexible and fit to fill gaps and hold society together, but without us the wall of society could never be built. (and conversely, without them the wall would fall apart.)

All our problems come from the worlds desire for sameness, keeping people from being able to fill their best roles and instead are forced into ones they cannot fill.


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02 Sep 2018, 1:18 am

Not sure what autism is to me -- other than both a blessing and a curse, certain brain wiring differences that puts me to different inclinations and choices, and acknowledge just as that.



But I do know that autism is not to me:
Autism is not my past nor are circumstances. My present and future are not defined by my failures and struggles as an autistic, but as a human with flaws.
Nor do my present and future are plagued by circumstances of loss and suffering. Anyone could mourn or hurt for years, anyone could be bullied and excluded, and anyone could get abused and traumatized for whatever reason -- that's not what autism is to me.

Autism is not all about stimming, seeking order, maintaining sensory diets, coping anxieties, and dealing with the world in ways NTs do not -- as those are but the human needs and reactions towards autism, and not autism itself.
So do are 'odd' reactions, preferences, 'traits', and behaviours -- and how NTs reacts to it.

Autism isn't really the learning disability, nor the processing disorders, but more like an ingredient for having one. The same principle goes with ending up with intellectual disability, giftedness, savantism, 'talents', and more complicated cases of exceptionalities and spiky aptitude profiles.
Autism are not the comorbidties itself. More like comorbities are the outcome of the human mind interacting with the autistic 'system'.

Autism is not some role or ranges of expectations to me. As are autism is not a choice of a person, nor a choice of another.

Autism, to me, is definitely NOT some social disorder or some personality quirk!!1!1!111 :skull: It's something deeper and more serious than a mere collection of 'traits'.



There might be more, but I don't have the time... :|


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02 Sep 2018, 3:28 am

the whole world is playing a game according to rules you were never taught.


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amdedinboro
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02 Sep 2018, 8:41 am

Kiprobalhato wrote:
the whole world is playing a game according to rules you were never taught.

I love this description. That's how I feel all the time. The rules are so unspoken and intuitive to most people, but a mystery to people like me. Any time I've tried to seek help from someone who's neurotypical, they'll say things like, "Just do this and this and this," like what they're telling me should come completely naturally to me. And I don't blame them, because they're just going by their own experiences, which is all anyone can do. But it's kind of like being handed an instruction manual in a language you've never heard of. It's like, technically, the answers are right there, but what on earth are you supposed to do with them? :roll:



amdedinboro
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02 Sep 2018, 9:00 am

Arganger wrote:
Me.

It is many types of differences the world hasn't ever built around. Being highly specialized to fill certain roles.

We are bricks, that cannot fill the role of mortar and would be broken if we try. The Nt's are that mortar, flexible and fit to fill gaps and hold society together, but without us the wall of society could never be built. (and conversely, without them the wall would fall apart.)

All our problems come from the worlds desire for sameness, keeping people from being able to fill their best roles and instead are forced into ones they cannot fill.


Having autism has actually made me think a lot about the idea of having roles to play in society. There are definitely times when I feel like I have none, and it makes me feel a bit like a waste of a person. Other times, meanwhile, I hear stories about people with autism that are supposed to inspire me. Like they've supposedly achieved great things in ways that NT's couldn't have done, thanks to their obsessive natures or the ability to have such a singular focus or whatever. Which, you know, it sounds nice. And the idea is that if someone like that can succeed, then so can I.

But that begs the question, does my life only have value if I manage to achieve great things with it? Is giving so much of myself to please others and contribute to the betterment of society the only way to justify my existence as a person with autism? And if I can't live up to that, does that mean that my life is without value? Because I can almost guarantee that the vast majority of people on the spectrum aren't going to pull off all these amazing achievements that are supposed to inspire us. Should someone on the spectrum who can barely function be expected to live up to some imagined role in society, and are their lives without worth if they fail to live up to that role?

All that said, I do sometimes see value in my ability to view the world from a different perspective from most people. Being a "brick" as you say, and being able to play a role that maybe an NT would be unable to fill. But I do have to wonder if people with autism would live happier, healthier lives in a society that placed less value on individual achievement, and more on community, the inherent dignity and worth of life, and treating everyone like human beings, regardless of whether they're brick or mortar.

I just find it interesting to think about, even if I might not have the answers.



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02 Sep 2018, 9:37 am

amdedinboro wrote:

Having autism has actually made me think a lot about the idea of having roles to play in society. There are definitely times when I feel like I have none, and it makes me feel a bit like a waste of a person. Other times, meanwhile, I hear stories about people with autism that are supposed to inspire me. Like they've supposedly achieved great things in ways that NT's couldn't have done, thanks to their obsessive natures or the ability to have such a singular focus or whatever. Which, you know, it sounds nice. And the idea is that if someone like that can succeed, then so can I.

But that begs the question, does my life only have value if I manage to achieve great things with it? Is giving so much of myself to please others and contribute to the betterment of society the only way to justify my existence as a person with autism? And if I can't live up to that, does that mean that my life is without value? Because I can almost guarantee that the vast majority of people on the spectrum aren't going to pull off all these amazing achievements that are supposed to inspire us. Should someone on the spectrum who can barely function be expected to live up to some imagined role in society, and are their lives without worth if they fail to live up to that role?

All that said, I do sometimes see value in my ability to view the world from a different perspective from most people. Being a "brick" as you say, and being able to play a role that maybe an NT would be unable to fill. But I do have to wonder if people with autism would live happier, healthier lives in a society that placed less value on individual achievement, and more on community, the inherent dignity and worth of life, and treating everyone like human beings, regardless of whether they're brick or mortar.

I just find it interesting to think about, even if I might not have the answers.


These are all important questions for NTs and Autistic people alike



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02 Sep 2018, 2:57 pm

constant confusion



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03 Sep 2018, 3:42 am

It's an answer and an explanation for why I am the way I am. I never understood why I didn't fit in and seemed so strange by others' standards. After so long, it's finally an understanding.

It's a hardship. It often means awkwardness, limitations and loneliness. It means frustration. It's depression, anxiety, sleep disturbances, OCD and ADHD. It means coming to terms with the fact that I cannot do some of the things that other people easily manage and that I think I should be able to do. It means I have to be gentler with myself than I have been in the past. It means it's not my fault; it's simply how my brain is wired. It means taking a lot of toxic drugs just to maintain some semblance of functionality.

It's also a gift. It's intelligence, creativity and a unique perspective. This lends itself well to photography and creative writing. It's a natural affinity for languages including music. It's an ability to connect with animals. It's something I'm learning to be grateful for as well as frustrated by. I'm not sure that I would trade the gifts for "normalcy," though perhaps in the past I might have because I wanted so badly to belong. Now I am planning to get a tattoo that says "Never Belong." That is the advice that I would have given to my younger self.

It makes me different, for better and for worse.


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03 Sep 2018, 10:19 pm

I'll go with the pithy.

I won't define Autism because it won't define me.


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05 Sep 2018, 6:50 pm

It means that I have a unique way of looking at the world and I march to the beat of a different drum. It means that I live in my own little world that's made of art. I see that as a good thing. I know what my next ideas are going to be. It also means that I roam freely and live life according to my own rules. I'm also an old soul who'd rather support the vets than celebrate the legalization of Pot. I do Remembrance Day all year round which may seem odd to women who are real ladies. I'm a Volkswagen in a world of Vespas, Jaguars, Rolls Royces and Minis.


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05 Sep 2018, 7:37 pm

I always liked to say that autism is like thinking on a different wavelength


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05 Sep 2018, 8:02 pm

Arevelion wrote:
What does autism mean to you?
Imagine yourself walking down a street, on either side of which are glass-walled houses. Inside each house, you can see people having fun; talking, laughing, dancing, playing games, and generally having fun together.

Occasionally, a person might notice you and motion for you to come in and join the fun; but you can't find the door. The people inside keep pointing in different directions to guide to to the door; but when you get to where they pointed, there is no door there.

Eventually, people either start to ignore you, or they make threatening gestures at you as if to drive you away.

So you walk down another street, on either side of which are glass-walled houses...


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06 Sep 2018, 8:08 am

For me, it's finally understanding after 46 years that I'n not a weird antisocial lumino-intolerent sound-hypersentitive with super specific fields of interest, and not giving a damn on other subjects....

Being diagnosed gave me an answer, and made me understand that I'm not alone with those challenges. Now instead of being anxious and stressing myself out in trying to fit in the wrong mold, I accept that I'm different, and understand my limitations to neurotypical expectations. I play by my own rules, try to not isolate myself too much, and overall, I'm feeling a lot better than 2 years ago (before my diagnose)


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06 Sep 2018, 10:15 am

I like to think that it means that those on the spectrum have the ability to filter through the social BS and see things how they really are. Having that ability does not make one's life easier though.

In a way, it is like looking at a Picasso and mentally seeing the art that exists within it, rather than how some people might see it as "junk" because they cannot process the design with their mind due to the effect of social interactions that they are currently thinking about. It is too abstract for them to do. They only know that a Picasso is valuable, but cannot appreciate it as a work of art.