People really not understanding the spectrum of autism???

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Age1600
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01 May 2008, 3:57 pm

So yesterday I was talking to a friend of mine whom use to come over my house a lot when I was growing up whom I havent seen in years, told him I was diagnosed with autism..........................

He was like "What? your not autistic, I never saw you handflap, or rock, you had a great personality, I've seen you smile, laugh and enjoy yourself! Even though you didnt really socialize, didnt start talking in complete sentences until the 2nd or maybe 3rd grade, acted extremely weird,, i thought it was just because you were extremely shy, depressed and probably a premie as a baby!"

I didn't know how to reply!

He then went on saying "We all knew something was wrong with you and we knew even though the doctors said you were Mentally ret*d, that it really didn't make any sense because you were so smart. Everybody just tried to be there as much as we could!"

Then he goes "You seem so social now then you ever were a child, I know as a child you didnt even care or have any interest in people, but now you seem sometimes to be life of a party, even though you still cant talk right, and still act extremely weird, You actually are at weddings now, and you have a boyfriend, you can't be autistic, because if so, that would mean you would be autistic as a child and be an autistic adult, right, so wouldnt that mean you shouldn't have a boyfriend or be social now?"

I was like wow!

He then kept saying "How can you be autistic if you didn't handflap, or rock, actually became verbal and now have a boyfriend?"

I asked him "So you mean to say since, I didn't handflap as a child or rock, had a great personality, smiled and laughed, could eventually talk, and now as an adult seem more social, can be the life of the party, and have a relationship, and eventually move on in life... I can't be autistic at all???"

He replies "Well yes, aren't all autistic adults suppose to living in group homes or institutions or need constant 247 supervision?"

I told him "to go read books on temple grandin and etc, and went on saying autistic children become autistic adults, some who are nonverbal more on the severe side stay that way into adulthood, and some grow into higher functioning verbal adults, it depends ALL on the individual!"

He says "How come you don't hear about the ones who become higher functioning then?, how come you only hear about autism in children? I only know what to look for in autistic children, and that when they grow up they are put away in institutions or group homes. And Autism is autism, there is no such thing as he/she autism or life threatening autism or autism with hope or autism with no hope! and Anyways How come you don't hear about autistic adults at all?"

I replied "I always wondered the same thing about the adults, and autism isnt just autism, no individual with autism are the same, and autism can improve and some can grow up and live a happy life"

He goes "I don't doubt your autistic, clearly you were more severe as a child, and we all know how far you've come, actually talking to people, engaging in conversations, being social, i don't think I ever seen you do that as a child but I didn't know that children with autism can ever be more then nonverbal, handlfapping, rocking, or screaming, tantrum making, or dangerous for that matter! Why don't you ever hear of those adults who grew up as a child nonverbal, and now as an adult verbal and if autism is so different, How come when you look at signs of autism, its all the same?"

I then explained that a lot of people are trying to change all of that..

He replied "Well thats good, because everybody I talk to only think every person with autism will never ever be able to live a normal life, and usually are charaterized by their handflapping, toe walking, rocking, usually are nonverbal and very dangerous!"

I then started educated him about autism and the spectrum as much as I could...


I was soo surprised at the whole thing! Hes not the first person i heard that from, how i cant be autistic as a child, because i didnt do the stereotype handflapping, rocking, and how I smiled and laughed as a child? Like what? Or how autistic children automatically grow up to be autistic adults in institutions or group homes??? It made me wonder why isn't there more awareness about the spectrum rather then the signs of autism? Like why instead people say these are the signs, instead put, these are just some signs to look for, not every autistic does these. Or just because that child doesnt handflap or because he doesnt avoid eye contact he can't be autistic, HUH?! Or Why isn't there a lot more awareness about autism adults and what their doing today, wouldn't parents of newly diagnosed children want to know?

There should be so much more awareness on the spectrum on how every autistic is different, on how all those signs or red flags does not fit the whole criteria for autism!

Instead every site should say especially after stating the signs or red flags of autism...Each sign of autism varies for each individual..
Three areas of development that are affected by EVERY individual with autism are: Social interaction, communication and behavior!
..and..
EVERY CHILD OR ADULT WITH AUTISM IS DIFFERENT
..and..
Autism is not a death sentence, some individuals with autism do IMPROVE and CAN live successful lives!




:arrow: Does anybody else agree with me? :!:


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momtanic
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01 May 2008, 4:11 pm

the majority of people don't realize that there are many different types of autism. People think "Rain Man"....my son mainly has the social issues and public awkwardness.....adults & children don't think he's autistic (he's an aspie) they just think he's weird. They
don't understand the different levels of the spectrum...he's very
smart but "hangs" with the teachers at school or adults anywhere else..he has a couple of friends and does want to interact more, but doesn't know how even though we try to guide him. He will be taking a social class over the summer and I hope it will help him "learn" how to be social.



Age1600
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01 May 2008, 4:21 pm

momtanic wrote:
the majority of people don't realize that there are many different types of autism. People think "Rain Man"....my son mainly has the social issues and public awkwardness.....adults & children don't think he's autistic (he's an aspie) they just think he's weird. They
don't understand the different levels of the spectrum...he's very
smart but "hangs" with the teachers at school or adults anywhere else..he has a couple of friends and does want to interact more, but doesn't know how even though we try to guide him. He will be taking a social class over the summer and I hope it will help him "learn" how to be social.


Yes, and its sad though ppl automatically think one thing, but with all the awareness going out, there should be ten times more awareness talking more about the spectrum and how each autistic is different! I hope your son does well in that social class!


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01 May 2008, 4:23 pm

Every child with autism is different, of course. But autism unites them all. I do not understand why the OP takes such offence at people who don't understand. It isn't their fault that they don't understand. The hypocrisy of this really grinds my gears.

"UNDERSTAND ME!" the Aspie shouts, but is unwiling to understand the other person. If you want to be understood, you must understand. Communication works best when it's bilateral and not unilateral.



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01 May 2008, 4:25 pm

My psychiatrist actually said that all the diagnostic criteria mattered for diagnosis, but that in practice, you could essentially take out all of them except the "lack of social and emotional reciprocity," and that if you interpreted that one criterion correctly, it covered all of the bases of the autism definition. Everything else was just diagnostic, and was something that should be dealt with, but that wasn't at the core of the issue.
I haven't decided yet whether or not to agree, but that is what she said.



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01 May 2008, 4:27 pm

slowmutant wrote:
Every child with autism is different, of course. But autism unites them all. I do not understand why the OP takes such offence at people who don't understand. It isn't their fault that they don't understand. The hypocrisy of this really grinds my gears.

"UNDERSTAND ME!" the Aspie shouts, but is unwiling to understand the other person. If you want to be understood, you must understand. Communication works best when it's bilateral and not unilateral.


I didnt take offense at all actually after i explained it to him, he said he was happy to know all of that and glad i told him! I'm not an aspie for one, number two i didnt shout UNDERSTAND ME. I think you took everything i said very much wrong.


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spindriftdancer
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01 May 2008, 4:40 pm

I've been working on it for 25+ years now... and I've sort of got it down pat. I only get caught out on some combinations of social situations that I haven't 'catalogued for a response' yet.



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01 May 2008, 5:07 pm

slowmutant wrote:
Every child with autism is different, of course. But autism unites them all. I do not understand why the OP takes such offence at people who don't understand. It isn't their fault that they don't understand. The hypocrisy of this really grinds my gears.

"UNDERSTAND ME!" the Aspie shouts, but is unwiling to understand the other person. If you want to be understood, you must understand. Communication works best when it's bilateral and not unilateral.


Sounds to me like you're reacting to some other situation, somewhere else, putting it where it isn't happening, and taking it out on the OP for some odd reason.

Also, even if she had asked for better understanding, why would that mean she had not tried to understand anyone else?


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01 May 2008, 5:32 pm

Age1600,

You almost seem to take PRIDE in being autistic. How did he know you for so long without knowing you were autistic? I had my OWN views of autism. They were better than your friend, but still not all that great. The idea that I may consider MYSELF autistic is pretty crazy, but I guess I do!



kip
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01 May 2008, 5:42 pm

Why caint she be proud to be autistic? Over time, as I've learned to deal with all my issues, and found my strengths, I've learned to accept I'm autistic. And in doing so, I did become proud of it. Not proud to not be able to interact, not proud of stimming, not proud of the fact that no one can truely look at me and completely understand me, but proud because I am NOT A SHEEP. I am not like them, worried about how I look, or how I talk. I am, to some extent, above the petty crap people put themselves thru. As much as I'd like to be part of that petty crap though... guess that's just human nature.



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01 May 2008, 5:47 pm

kip wrote:
Why caint she be proud to be autistic? Over time, as I've learned to deal with all my issues, and found my strengths, I've learned to accept I'm autistic. And in doing so, I did become proud of it. Not proud to not be able to interact, not proud of stimming, not proud of the fact that no one can truely look at me and completely understand me, but proud because I am NOT A SHEEP. I am not like them, worried about how I look, or how I talk. I am, to some extent, above the petty crap people put themselves thru. As much as I'd like to be part of that petty crap though... guess that's just human nature.


WOW, I MEANT to explain that. HECK NO! I did NOT mean to imply that she was inferior, unjustly proud, etc... HECK, I even kind of attributed that to ME a bit! I meant ONLY that, being so proud, he should have known.

Anyway, please realize my true intent.



kip
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01 May 2008, 5:54 pm

2ukenkerl wrote:
kip wrote:
Why caint she be proud to be autistic? Over time, as I've learned to deal with all my issues, and found my strengths, I've learned to accept I'm autistic. And in doing so, I did become proud of it. Not proud to not be able to interact, not proud of stimming, not proud of the fact that no one can truely look at me and completely understand me, but proud because I am NOT A SHEEP. I am not like them, worried about how I look, or how I talk. I am, to some extent, above the petty crap people put themselves thru. As much as I'd like to be part of that petty crap though... guess that's just human nature.


WOW, I MEANT to explain that. HECK NO! I did NOT mean to imply that she was inferior, unjustly proud, etc... HECK, I even kind of attributed that to ME a bit! I meant ONLY that, being so proud, he should have known.

Anyway, please realize my true intent.


Oh, my bad, I think I misread that. Oops. [net!hug]



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01 May 2008, 6:23 pm

slowmutant wrote:
"UNDERSTAND ME!" the Aspie shouts, but is unwiling to understand the other person.


I think that's total rubbish. A key component of AS is that we know inside that we are continually making huge efforts to understand all of the others in our world. The problem is that they don't see this effort, rather like you are not seeing it.

The hypocracy cuts both ways. It is hypocritical of the (worst) NT's to suggest we are not making any effort to fit in to 'their reality', when if fact many of us are making far more effort to understand others than than they are.


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Sublyme
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01 May 2008, 7:17 pm

I totally get where you are coming from. I am actually not open about my autism at all, simply because I know that most people don't really understand. I also have classic autism (original diagnosis at age 3) also. I was non-verbal until the age of 5, and spent my childhood in special ed. I grew up hearing how low functioning I was and how I'd never lead a normal life.....here I am 23 years later, with a graduate degree, a career, a fiance and a house that I own. I'm more open about me being bipolar since I actually think that there is less stigma associated with it (oddly enough), and it's pretty obvious when I'm manic (oh and usually not medicated)...but that's another topic....the autism I can sort of hide....well not so much...but I can pretend....

People at work joke about my inability to sit still as me having too much coffee...some joke that I have ADHD. People think I'm stuck up because I don't make eye contact and I often don't say good morning. I respond to "good morning" with "good"....thinking they just asked my how I am, while looking at the floor. I still have issues with echocholia, so if my fiance asks "are you hungry?" I respond "are you hungry?" I still rock, not so much hand flapping as knee bouncing, finger tapping and pen clicking. I love to pile all the blankets on top of me and all the pillows in bed....it helps me sleep (I'm looking into a weighted blanket).

I remember when I told my fiance (then boyfriend of five months). He asked me flat out why I was so weird. Why I always played "copycat." Why I rocked, why I always tapped my fingers or bounced my knee.....I told him I had autism. He actually said that was impossible because I was nothing like Rainman. He went on to explain what he thought people with autism were like.....basically like Rainman. I explained to him that many of us can grow up and lead independent lives. We can hold jobs, have careers, families even....and that's what I planned to do.



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01 May 2008, 7:39 pm

Age1600,

I think what you're seeing is really the result of a generational issue. Years ago, there wasn't a "spectrum" the way there is now. Autism was viewed as a much more one-dimensional diagnosis, and people didn't see autistic individuals functioning in society. That is not to say they didn't - they just weren't diagnosed as autistic! Temple Grandin was a true breaker of stereotypes and barriers, not only because she is autistic and has accomplished so much, but because her mother refused to allow her to be institutionalized at a time when that is what was often done with children who didn't "fit." We don't really know what might have happened with so many children who were institutionalized. This is not only autistic children - it's all the children who didn't "fit" - children with Down Syndrome, ret*d children, children with various disabilities whose parents were told that it was the best thing to do. Fifty, sixty years ago, parents trusted the expertise of doctors, and doctors said that was what was best. Thirty years ago (approximately), the lawsuits started emptying institutions and forcing community services to be provided. Thirty-five years ago, schools did not have to provide education for children who did not fit into mainstream classrooms - this is a relatively recent occurrence! So some of what you are seeing and hearing is simply the result of old information and education. If people learned about autism years ago, and never had that information updated, they will think the way this friend thinks. As a society, we don't know much about autism, or about what people with autism can accomplish. We're just starting to figure this out. So it's to be expected that the individuals won't be terribly educated until we start educating them.



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01 May 2008, 8:02 pm

Many people, including professionals, seem to be unaware that the clinical picture of Autistic Disorder changes over time.

Some stay the same
Some improve
Some improve, "regress", and then improve
Some improve, and then "regress"