Not knowing your whole life VS Knowing at an early age +/-s

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ike
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08 Jan 2009, 12:58 pm

sunshower wrote:
It's interesting, but I seem to have the minority opinion here in that knowing about my AS as I developed (I found out when I was 11), actually pushed me harder to becoming normal.

I wanted to fix myself, and make myself a good person in any way I could, and I forced myself into things that I might not have had I not known about my AS. Before I knew about my AS, I sort of lived happily in my little dream world for the most part.


That's awesome! :) That's basically what I was talking about with regard to having an optimistic response to the diagnosis -- that whether the diagnosis hurts or helps depends a lot on the individual and the way they interpret the information. You describe it a bit differently than I did -- more as "not giving up" versus my depiction of perceiving the diagnosis as an aid in learning social skills... but either way, you interpreted the information in an optimistic way.


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08 Jan 2009, 1:28 pm

It would have improved my life drastically beginning in kindergarten/elementary school if I had known that I am on the spectrum.

I'd not have failed and kicked out of school early, repeated a grade, wouldn't have this mass of disciplinary actions against me of all the schools and I would have been able to get a better education. Get better grades that would have been at least somewhat connected to my IQ and abilities.

I'd also have better relationships with people if they had known about what was 'wrong' with me.

I was a plain obviously different kid that nobody understood and thus nobody sent to a professional/put a label on - I say 'thank God!'. Nobody would have diagnose me with autism, as obvious as it was when I was a kid - I was verbal and if somebody could manage to engage me, I answered back and I looked intelligent!

Knowing that I am autistic was the first step to improving my non-existent social life and various weaknesses.

I don't know whether this is chance, a matter of which traits one has or a matter of severity of individual symptoms.

But I didn't know how to approach others.
I couldn't get in contact with them.
I didn't know anything about what I had possibly done wrong.
I didn't know anything about how I was different before I got my diagnosis.

And that's just the social part. No mention of the 'you do weird things' and 'you talk funny' and 'you cannot do what is normal' and so.

I tried hard, real hard, but it just didn't work because I didn't know that not answering people, staring into space, walking away or towards random folks would not get me in contact with anyone. I didn't know I needed routines, I seriously didn't know anything.

How could I have known without knowing I was autistic though?

I was raised in an entirely non-special-ed environment and I was unable to get in contact with peers despite that I am verbal. (You'd think that guarantees some contact that teaches you to at least say 'hi' and 'thank you' and such, but in truth it doesn't.)

From my teens on I slowly realised there was something mightily wrong with me. But I didn't know what - I had only understood about that mechanism called 'social rejection' then - and so I didn't know how to 'fix' it.

Yes, I agree that maybe some people give up if they have a nice comfortable reason to do just that. But that's because of how they are or because of their situation that they can or cannot escape - it's not the fault of being aware of the mere fact. It's different for each person how that knowledge influences their future life.


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Padium
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08 Jan 2009, 1:57 pm

Sora wrote:
It would have improved my life drastically beginning in kindergarten/elementary school if I had known that I am on the spectrum.

I'd not have failed and kicked out of school early, repeated a grade, wouldn't have this mass of disciplinary actions against me of all the schools and I would have been able to get a better education. Get better grades that would have been at least somewhat connected to my IQ and abilities.

I'd also have better relationships with people if they had known about what was 'wrong' with me.

I was a plain obviously different kid that nobody understood and thus nobody sent to a professional/put a label on - I say 'thank God!'. Nobody would have diagnose me with autism, as obvious as it was when I was a kid - I was verbal and if somebody could manage to engage me, I answered back and I looked intelligent!

Knowing that I am autistic was the first step to improving my non-existent social life and various weaknesses.

I don't know whether this is chance, a matter of which traits one has or a matter of severity of individual symptoms.

But I didn't know how to approach others.
I couldn't get in contact with them.
I didn't know anything about what I had possibly done wrong.
I didn't know anything about how I was different before I got my diagnosis.

And that's just the social part. No mention of the 'you do weird things' and 'you talk funny' and 'you cannot do what is normal' and so.

I tried hard, real hard, but it just didn't work because I didn't know that not answering people, staring into space, walking away or towards random folks would not get me in contact with anyone. I didn't know I needed routines, I seriously didn't know anything.

How could I have known without knowing I was autistic though?

I was raised in an entirely non-special-ed environment and I was unable to get in contact with peers despite that I am verbal. (You'd think that guarantees some contact that teaches you to at least say 'hi' and 'thank you' and such, but in truth it doesn't.)

From my teens on I slowly realised there was something mightily wrong with me. But I didn't know what - I had only understood about that mechanism called 'social rejection' then - and so I didn't know how to 'fix' it.

Yes, I agree that maybe some people give up if they have a nice comfortable reason to do just that. But that's because of how they are or because of their situation that they can or cannot escape - it's not the fault of being aware of the mere fact. It's different for each person how that knowledge influences their future life.


Wow, that is exactly me, I just wish I would have been accepting of the diagnosis sooner, and been able to get help with it, more specificly, here.



millie
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08 Jan 2009, 2:47 pm

found out at 46 last year. my life has been hell. amazed i did not kill myself. wouldn't change any of it. no regrets. it is what it is.
also wouldn't want to repeat a life of not knowing.


BUT:
Glad i am not some cushioned and pimply youth who has had everything handed to them on a platter (including a computer screen) just because they have AS. at least i got out there and was forced to live and have some weird adventures along the way.

(however, a teeny weeeny bit of suport along my way might have been nice.)



garyww
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08 Jan 2009, 2:57 pm

Maybe that is the biggest difference between those who would like to be 'cured' and those who are happy being the way they are. From what I have seen the ones who are 'happy' are the ones who realized they were strange early on without a diagnosis and as a result had to get some gravel under their skin so to speak when they were growing up the hard way. Those who were diagnosed early and have been treated with special care seem to be those who don't want to be strange anymore.


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millie
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08 Jan 2009, 3:04 pm

Quote:
garyww wrote:
Maybe that is the biggest difference between those who would like to be 'cured' and those who are happy being the way they are. From what I have seen the ones who are 'happy' are the ones who realized they were strange early on without a diagnosis and as a result had to get some gravel under their skin so to speak when they were growing up the hard way. Those who were diagnosed early and have been treated with special care seem to be those who don't want to be strange anymore.



i agree. blundering through has been hell. but as you mention somewhere else...once one can comprehend that mistake making is a vital part of the process of life and growth for any human being, the fun can really begin.
i am scarred wtih gravel rash. only way to be.

i really wouldn't want to be a soft and cushy kid who has been coddled through the life process because of AS. some of the young ones might do well to unplug the screen and go out and f#*k up a bit..then come back and write about more than stats and what has been learned in academia.

contentious? hope so.



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08 Jan 2009, 3:06 pm

millie wrote:
Glad i am not some cushioned and pimply youth who has had everything handed to them on a platter (including a computer screen) just because they have AS. at least i got out there and was forced to live and have some weird adventures along the way.


I am one of those people. I am getting certain pieces of technology to help "lessen the impact" of my AS on my education. Basicly I am getting tech to help with my organization of notes, something to scan my paper notes on, and something to take digital paper notes (a tablet). I cannot type nearly fast enough to take notes on a laptop, and I write faster, plus my lappy is 20 lbs... not something to be carried to class everyday. Fortunatly for me this thing will be easy for me to carry without making my bad back worse (4 lbs).



ike
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08 Jan 2009, 3:09 pm

garyww wrote:
Maybe that is the biggest difference between those who would like to be 'cured' and those who are happy being the way they are. From what I have seen the ones who are 'happy' are the ones who realized they were strange early on without a diagnosis and as a result had to get some gravel under their skin so to speak when they were growing up the hard way. Those who were diagnosed early and have been treated with special care seem to be those who don't want to be strange anymore.


That certainly seems insightful... I know that for myself, even though I'm younger than some of the late-diagnosis here, when I found out about AS and started reading about things like hyperfocus, I realized that this not only explained my job problems, but it also explained why I'm so advanced in my niche industry as well... In any given industry of course there are always people for whom the job is a passion and they stay on top of the job, continually improving their skills... but the fact that I hyperfocus so much gives me an advantage in the learning & doing department. Would I like to be more naturally social? Sure... but I also happen to really like being fantastically skilled at what I do for a living because it's also an interest for me. It seems like the average teenager is less likely to have noticed their long-term ability to develop those kinds of advanced skills.

Which kind leads into another thought... they talk about our having "obsessive interests"... and I'm not sooo convinced that what we do really constitutes "obsession". I think it may be that just because of our tendency to hyperfocus and tune-in on what we're doing to such an incredible degree, (something that we can't really control), that we appear to be obsessed, when the reality is that we just have a normal "interest" in the thing and the unusual brain function is what's making us appear obsessed to the outside world.


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Last edited by ike on 08 Jan 2009, 3:30 pm, edited 1 time in total.

millie
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08 Jan 2009, 3:18 pm

Quote:
Padium wrote:
millie wrote:
Glad i am not some cushioned and pimply youth who has had everything handed to them on a platter (including a computer screen) just because they have AS. at least i got out there and was forced to live and have some weird adventures along the way.


I am one of those people. I am getting certain pieces of technology to help "lessen the impact" of my AS on my education. Basicly I am getting tech to help with my organization of notes, something to scan my paper notes on, and something to take digital paper notes (a tablet). I cannot type nearly fast enough to take notes on a laptop, and I write faster, plus my lappy is 20 lbs... not something to be carried to class everyday. Fortunatly for me this thing will be easy for me to carry without making my bad back worse (4 lbs).


my nephew who has bee dx'ed at 3 may have a similar experience.
have you ever hypothsised how your life might be IF you had exactly the same issues and difficulties WITHOUT ANY help and without a name for what was going on?

I have tried to imagine being dx'ed when a kids. how would my life have panned out?

that is my point.
don't mean to offend, but do think there is a vast difference in the younger AS people with the older, here on WP. i am wondering if it is because of not knowing for so long versus knowing.
It is called being thrown to the wolves.



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08 Jan 2009, 3:28 pm

millie wrote:
Quote:
Padium wrote:
millie wrote:
Glad i am not some cushioned and pimply youth who has had everything handed to them on a platter (including a computer screen) just because they have AS. at least i got out there and was forced to live and have some weird adventures along the way.


I am one of those people. I am getting certain pieces of technology to help "lessen the impact" of my AS on my education. Basicly I am getting tech to help with my organization of notes, something to scan my paper notes on, and something to take digital paper notes (a tablet). I cannot type nearly fast enough to take notes on a laptop, and I write faster, plus my lappy is 20 lbs... not something to be carried to class everyday. Fortunatly for me this thing will be easy for me to carry without making my bad back worse (4 lbs).


my nephew who has bee dx'ed at 3 may have a similar experience.
have you ever hypothsised how your life might be IF you had exactly the same issues and difficulties WITHOUT ANY help and without a name for what was going on?

I have tried to imagine being dx'ed when a kids. how would my life have panned out?

that is my point.
don't mean to offend, but do think there is a vast difference in the younger AS people with the older, here on WP. i am wondering if it is because of not knowing for so long versus knowing.
It is called being thrown to the wolves.


yeah, I lived the first 18 1/2 years of my life like that, and when I was diagnosed at 15, I denied it to myself, and pushed away all help that was offered because I just had to be normal. Now I look at it like this: what can I do today that will make my tomorrow that much better than it would have been if I were still living in yesterday. To quote Disney: Just keep moving forward.



millie
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08 Jan 2009, 3:32 pm

Quote:
Quote:
yeah, I lived the first 18 1/2 years of my life like that, and when I was diagnosed at 15, I denied it to myself, and pushed away all help that was offered because I just had to be normal. Now I look at it like this: what can I do today that will make my tomorrow that much better than it would have been if I were still living in yesterday. To quote Disney: Just keep moving forward.
[quote]

but i fyou have that attitude, then i might hadd you are NOT necessarily one of the young kids i am referring to.
sounds like you are developing an attitude that is really quite healthy and progressive.

(wasn't disney a scumbag??)



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08 Jan 2009, 3:34 pm

Excellent topic!

I think I may have been one that caved and just gave up trying had I known as a child. At the same time I may not have developed the intense social anxiety I did had I known WHY I was different. I'm in my 30s and have been aware of the possibility that I"m AS for about a year. I'm still trying to decide if an official diagnosis is in my best interests going forward. . .



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08 Jan 2009, 3:38 pm

As to the obsession thing. I hate the word but use it since NT's do. To me my obsessions are 'projects' that occupy my time. Obsessions as they are customarily described are something that I actually have no experience with.


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ike
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08 Jan 2009, 4:01 pm

millie wrote:
(wasn't disney a scumbag??)


Perhaps, but he wasn't actually quoting the guy, just a movie his company made a couple years ago called Meet the Robinsons.


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millie
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08 Jan 2009, 4:26 pm

Quote:
ike wrote:
millie wrote:
(wasn't disney a scumbag??)


Perhaps, but he wasn't actually quoting the guy, just a movie his company made a couple years ago called Meet the Robinsons.


chuckle... ok.



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08 Jan 2009, 4:51 pm

In reading all these responses, it's hard for me to figure out where I fit here, so I'll just say what I feel.

Basically, it's all individual. Someone who wants to give up will give up whether they're Dxed at 5 or 50. Plus, being Dxed early is only a good thing if you have a good support system.

I was Dxed at 50. If I'd been Dxed when I was a child (pretending for a moment that the Dx existed), my parents would have gone into total flipped out denial. How could their perfect child have a Pervasive Developmental Disorder? How could two such perfect parents have an autistic child? I mean, they were embarrassed because my teeth weren't straight. So, I'm very glad all this didn't come up then or it would have been hell. If anyone in the school system had tried to intervene on my behalf, my parents would have taken me out of school altogether. School was the only place that actually *worked* for me. So, I'm glad I wasn't Dxed back then.

Has my life been difficult because I didn't know I've been an Aspie from birth? Yes, very. Do I feel like I've wasted 50 years of my life? No, I don't. Sure, I made some bad decisions, meaning that, in hindsight, I might have made different choices. I grieve that. But all those "bad" decisions got me to where I am this very minute, with all you nice people, and a husband who loves me no matter what, and the coolest kid in the world who loves me no matter what, and some good friends who didn't faint when I told them about my Dx. So in a sense, age 50 was the perfect time to find out. I have all the support I need and then some.

As for the younger people having a cushier time of it: Nonsense. They still get bullied, they still get ostracized, they still put up with all the crap we did. Given all this, the supports they get are wonderful. There's nothing wrong with getting help if you need it. I always had a drive to fulfill my purpose on this earth, and having someone tell me when I was younger that I didn't have to be on sensory overload every minute of every day would not have interfered with it. The same is true for anyone with a sense of purpose.

The truth is, it's perfectly easy to get psyched out and give up no matter when you're diagnosed. I can say that because I've had days when I've felt very psyched out, days that I've felt, why bother trying to improve myself or be of use? I have this sensory processing deficit and I'll never connect to most people in the way I've always wanted to, so just stay home and be depressed. Go ahead. Who will care?

But I pull myself out of these moods and I keep going down the road because my heart is bigger than the interesting sensory processing system that houses it. This can be true for anyone, at any age.


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