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MJIthewriter
Pileated woodpecker
Joined: Mar 19, 2008
Age: 25
Posts: 196
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 Posted: Tue Apr 15, 2008 2:46 am Post subject: Frustrated and discouraged |
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I've been trying to advocate on AS. I've gotten many kind comments and thank yous, but this week it's turning ugly with some members. I'm feeling pretty hurt. Maybe I just need a shoulder to cry on so to speak...
http://detailedthinker.blogspot.com/
I wrote about one of the offensive comments in my blog.
I deliberately left the username out. |
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morning_after
Phoenix
Joined: Jan 29, 2008
Age: 27
Posts: 1041
Location: Arizona
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| Posted: Tue Apr 15, 2008 2:56 am Post subject: |
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*hugs mj*
Well, anything on the internet is arbitrary. People will sometimes say whatever they want to, even when it's not true, just because they want to make you upset.
I say don't let anything here get to you.
But if you need a hug or a prayer, let me know.
_________________
Bill Cosby: Dad is great! Give us the chocolate cake!
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MJIthewriter
Pileated woodpecker
Joined: Mar 19, 2008
Age: 25
Posts: 196
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| Posted: Tue Apr 15, 2008 3:23 am Post subject: |
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The same username was a person who claimed their "NT" child didn't want to regress because of the shots... I tried to make a separate statement, that if it works, good. But if the vaccine did not cause his/her child's autism and his child happens to be HFA, I didn't want him/her to be disappointed. After all he/she is that person's child and should be loved regardless.
If the treatment fails, I wanted them to know "acceptance" would be a good "plan "B" to fall back on...
I also want to help the parents realize that their autistic kids pick up more than they may believe. Before 1995-1996 when I got aquainted with ANI and people like Jim Sinclair, I believed I was this flawed person with some kind of disability and will never become normal.
That all changed after my dad and I got aquainted with ANI and other autistic advocates. I learned I was not alone and no less a person just because I am different. It also gave me the self esteem needed to get through middle and high school. I just wish that parents could pass on that positive message to their kids, regardless of how they may feel.
I feel sometimes people become so blind thinking they are doing the right thing that they may fail to see things that will not only be helpful but what their child REALLY needs. I'm not saying they should give up whatever their doing. (although some things I wish people would think more carefully before diving in. But I have no rights to say what they can and can't do.)
I was also hurt when some user mentioned only two autistic adults were the exception and being truthful and helpful. I felt a huge slap in my face, because after all I believed I was trying to be just as helpful. I sent them a pm asking if they thought my posts were helpful and if they had any problems with anything I posted.  |
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nutbag
Moofy Prime
Joined: Jan 28, 2007
Posts: 3039
Location: Arizona
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| Posted: Tue Apr 15, 2008 4:45 am Post subject: |
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I am over there too and know what happened. A member there trashed all "self dx'd aspies" too in a mode of autism snobbery.
Well, I am self dx'd aspie. Wasn't hard once I knew what Asperger's is. And I am not at all mildly autistic. And since I am old, I wasn't dx'd in school as Asperger's hadn't been invented yet. At that time autism meant retardation. . . and as we go allong it is starting to look as though many maybe most severely autistic persons aren't retarded either - just communication trouble.
Some people can be heartless to others, even when we are all people touched by autism. Don't know why. Try not to let virtual people on the web hurt you. Real life is bas enough.
_________________
Who is John Galt?
Still Moofy after all these years
It is by will alone that I set my mind in motion
cynicism occurs immediately upon pressing your brain's start button |
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Zarathustra
Phoenix
Joined: Oct 06, 2007
Age: 101
Posts: 571
Location: In orbit
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| Posted: Tue Apr 15, 2008 6:16 am Post subject: |
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What I've learnt from "That Place" is the negative fundraising advertising is having a sinificant effect on parents' attitudes. I would guess that most of the parents share their kids autistic phenotype and this gives rise to some of the more unplesant behaviour you find there. i.e. the obsessive belief in vaccines cause autism [despite little evidence], refusal to entertain others viewpoint, and insensitive and inappropriate behaviour. Their hate of autism is in large part self-loathing. On the otherhand people like grandma C, docOsc and tiresias are pretty cool.
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"No matter what the facts are, only the Truth matters" |
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MJIthewriter
Pileated woodpecker
Joined: Mar 19, 2008
Age: 25
Posts: 196
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| Posted: Tue Apr 15, 2008 6:19 am Post subject: |
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Here is the post that made me feel a big slap in the face:
| Quote: | would like to add here that the online behavior of most of the adults, who say they have Autism, that I have read is something I would never want my child to be exposed to. The only exceptions to this is ****** and ****** who are amazing and honest.
I perfer to speak to adults in my community who have Autism. It is interesting how different their views are on acceptance than what is portrayed online. So if I want to know about how someone with Autism sees their world then I will ask a REAL live person with Autism. Anyone can be who they want online and sadly for some reason Autism appears to be the new "goth" for some. |
I "*" the usernames involved. I felt very offended because I've been trying to be helpful and have gotten good feedback from quite a few members, even some that I may disagree with, but for this person to say I'm not a real person with autism....I feel tempted to bite my arm, but I'm not. I used to do that as a kid, but I've grown up and found some better coping mechanisms than that.
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I was not self diagnosed. At age 2 or so, my parents were told I was likely severely retarded and not to expect me to make it to high school. I think they were even told I wouldn't become verbal either.
At age 6 I eventually got Dxed with PDD NOS at the Waisman Center in Wisconsin.
http://www.waisman.wisc.edu/ That was after a battery of tests, which strangely I don't remember, except maybe us being frozen out of our car and my parents had to open the hatch and have me crawl in to get the doors open. (Hopefully that memory went to that location) 
I've grown up from being non-verbal, a "head banger" and so on... How dare anyone claim I am faking? 
I try to give my honest advice what they could do to minimize the head banging behavior, but it seems they ignore me and keep on complaining about it.
I keep telling them, that kid is frustrated... I'm going to start using this question, "Have any of you had a crying spell around 3 am in the morning and had no one to talk to at the time?" Yeah, that’s how it felt when I did a lot of those behaviors... I did not know that it was normal to feel upset and cry. For some reason I thought those feelings must magically go away if you will them hard enough.
It turns out no I'm not exempt from feeling human emotions... And the best way of coping with them, I'm finding out is the about the same way non autistic people cope with them. If only I knew that back then as a kid. It would have literally saved me a lot of headache.
And because I've been there as a headbanger, biter, etc, I take a very dim view when people make a joke out of it...
It's not funny and it's not a laughing matter. It's like mocking someone because of their race or beliefs... It's going to hurt no matter what "good" intentions... |
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Smelena
Cure Neurotypicals Now!
Joined: Apr 02, 2007
Posts: 2148
Location: Australia
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| Posted: Tue Apr 15, 2008 6:54 am Post subject: |
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MJIthe writer .... unfortunately you're not going to change everyone's point of view.
As a parent of 2 Aspie sons, I have found your posts and blog site very helpful .... your blog is on my Favourites. Thanks!
I feel sorry for the kid .... having such an angry, narrow-minded parent can not be an optimal environment.
Helen
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To see my family and my advocacy efforts: http://au.youtube.com/watch?v=JR03uSFQf6Y and http://au.youtube.com/watch?v=7-ZBxFYFvuA |
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MJIthewriter
Pileated woodpecker
Joined: Mar 19, 2008
Age: 25
Posts: 196
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| Posted: Tue Apr 15, 2008 1:09 pm Post subject: |
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Okay I talked with my mom via email about the frustration. She let me know that I was not considered severly retarded by the doctors, but mild to moderately retarded. At age 6 the psychologist in Appleton, WI thought I had child schizophrenia and that lead them going to the Waisman center.
I'll try to fix this inaccuracy wherever I put it.
I have a hard time with things I can't remember. |
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NicholasGray
Tufted Titmouse
Joined: Jan 24, 2008
Posts: 33
Location: Phliadelphia
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| Posted: Tue Apr 15, 2008 1:21 pm Post subject: |
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MJI
I wanted to add on to the list of people who really enjoy your posts. I find them thoughtful and mature. I especially enjoyed your article that just went up on Tips for Autism Awareness Month.
Face it, some people can be real dicks when they don't get their way. And that place seems to have an extra high dick quotient. I applaud you for venturing in there and trying to help.
And if virtual hugs work, then have one form me. |
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ignisfatuus
Raven
Joined: Feb 06, 2008
Posts: 122
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| Posted: Wed Apr 16, 2008 2:09 am Post subject: |
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| The internet attracts some very unsavoury people who enjoy upsetting others, probably to compensate for a deficiency. Telling you not to take too seriously what Anonymous Jane or Joe Asshole say on the 'Net would be hypocritical, as I've nearly put a fist through my monitor on several occasions. I tend more and more to avoid forums as they inevitably wind me up and it's not worth it if the person on the other end can't be held responsible. |
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velodog
Gold Supporter
Joined: Mar 16, 2008
Posts: 1251
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| Posted: Wed Apr 16, 2008 6:01 am Post subject: Re: Frustrated and discouraged |
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| MJIthewriter wrote: | I've been trying to advocate on AS. I've gotten many kind comments and thank yous, but this week it's turning ugly with some members. I'm feeling pretty hurt. Maybe I just need a shoulder to cry on so to speak...
http://detailedthinker.blogspot.com/
I wrote about one of the offensive comments in my blog.
I deliberately left the username out. |
Keep doing what you are doing. I liked your post in the Are all AS Religious? thread. I'm recently diagnosed, twice your age and very cynical. Your optimism can help people.  |
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morning_after
Phoenix
Joined: Jan 29, 2008
Age: 27
Posts: 1041
Location: Arizona
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| Posted: Thu Apr 17, 2008 2:33 am Post subject: |
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MJ I want you to know you don't have to accept what a-holes say on the net. And I, for one, will always try to accept you for who you are.
Some people get a little insecure around people that are different, but thats because they are unsure of how to react. When someone calls you something, sometimes deep down they believe that that is what THEY are and they are trying to accuse you because then they can pin it on someone outside themselves when they cannot accept the guilt themselves. This is calleds projection.
You, mj, are a treasure.
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Bill Cosby: Dad is great! Give us the chocolate cake!
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Kaleido
On an extended tea break
Joined: Feb 19, 2007
Age: 50
Posts: 2264
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| Posted: Thu Apr 17, 2008 5:19 am Post subject: |
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| morning_after wrote: | | You, mj, are a treasure. |
Yes, indeed |
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Roxas_XIII
Rebel Leader and Pizza Connisseur
Joined: Jan 09, 2007
Age: 17
Posts: 1402
Location: Tokyo Settlement - Area 11, at the local Pizza Hut
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| Posted: Thu Apr 17, 2008 6:34 pm Post subject: |
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MJ, if any of these people give you trouble, just send me their name and a picture of them, and your good old buddy Kira will take care of them for you 
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Kentucky Fried Chicken and a Pizza Hut! |
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HarryWilliams
Snowy Owl
Joined: Apr 07, 2008
Age: 110
Posts: 129
Location: UK
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| Posted: Thu Apr 17, 2008 6:45 pm Post subject: |
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MJ, There's people on that board that pounce on autistics as soon as they start posting and try to drive them away. I've seen it happen 3 or 4 times in the last 10 days. Just take it on the chin. And KEEP POSTING! They get bored and pick on someone else.
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