am i the only one embarssed?

[paulmoosberg]

i understand that the comedy central thing for autism education is for a good cause but it just seems to make me want to cry? i don't quite understand why i feel like i am trapped inside my mind and i don't want people thinking about me. or thinking about my condition. i don't want people to feel sorry for me, lord knows i feel sorry for myself enough.

i don't know, i probably feel happy that people can help. and i feel like they are doing an excellent job of explaining autism. i feel a bit left out since they are focusing on the severe autism cases. i guess i feel like my asperger's is something i should be ashamed of since it doesn't seem to debilitate my interactions as it does with my friend (little mike, around 47 IQ)

i know i shouldn't feel like this. i tend to expound accross thoughts and fester through my life and confusion. and i know i am still messed up in the head, but i guess i feel like i should be embaressed and not tell people about my syndrome since it is not as severe as others? make anysense?

darn i have been really entertained from the show. and it looks like they are getting a good amount of donations plus it is nice to know that some people are learning more and more about the disability.

[tgrimes]

yes, you reminded me of when I was at a developmental specialist recently, I saw a mom with a kid who was in the severe range and I kind of felt pathetic for ever feeling sorry for my son's situation.
Every once in a while we might be humbled by a more difficult situation, but it shouldn't be an opportunity for embarrassment... rather perspective or something like that.

[Braindrain]

This is just my opinion, but it's possible that the reason they show only
the severe cases is because they think it will generate more attention
to the cause of finding money for autism research. If they showed
someone with mild autism, viewers could say, "That doesn't look so bad,
what do they need money for?" I'm not saying that everybody would
react like that, but there are some people who would.

It's not just autism, either. If you look at the telethons, they always
show the more severe cases, so that attention will be called to whatever
the condition may be. They may show some milder cases, to give the
viewers reason for hope, but it's the severe cases that call attention
to the condition.JMO

[LIZARD]

((((((((((((((((Paul)))))))))))))))))))).

This breaks my heart, honestly. Let me first assure you that you have nothing to be ashamed of. I understand what you're saying in a way that a lot of other people can't. I have hydrocephalus, and I am able to live normally about 350 or so days out of the year, at times with added effort. I know of thousands of kids and adults whose situations with hydro are so much worse, but all of them (and their families) have assured me that my "survivor guilt," while a normal emotion, should never equal shame or embarrassment because of what they deal with. I know severe headaches, brain surgery, and seizures, as well as learning disabilities, but with 40 years of practice and several blessings and miracles along the way, I have fared much better than many of them, and even better than my very optimistic nsg predicted decades ago.

I have only caught a few minutes of the program, but it's not too surpising that they have focused on the more severe situations. My 12 yo son is also one of the very fortunate, as you are. He still needs a lot of help with communication, but he amazes me every day with his progress and ...he is now praticing to be a teenager! It's cute to watch, but it's also painful, in a way, to know that he realizes he's growing up and will become aware (if he's not already ) of his autism. My self-discovery of my hydro was more painful than I can describe, and I'm terrified of that for him. He's such a happy kid, but in a big way, I also look forward to it, knowing that he has the capacity to be independent some day. (Any advice you have on helping him with this transition is welcome and deeply appreciated, btw. Thanks!)

Just know that you are appreciated and admired by all of us parents who are raising kids with autism and hoping they have the abilities you do. You mean more to us than we can ever say.


God bless,

LIZARD

[LIZARD]

Originally Posted by Braindrain

This is just my opinion, but it's possible that the reason they show only
the severe cases is because they think it will generate more attention
to the cause of finding money for autism research.

This is right on the mark. That's exactly why they do it, too. In some ways, it's bad for autism (and other conditions') awareness, but in a way, I understand it. This is not to say I like it, by any means, but it is the tack most advocacy orgs use. That's why it's so important for those of us who have, or have kids who have, milder manifestations of the condition (whatever it is) to feel free to step up to the mike and let the world know who we are. It gives them much more accurate info, and it gives hope to the families who need it.


LIZARD

[Kristen (ColeysMom)]

I think they also show the severe cases because it's so easy to see...we are 'seasoned' here and know that things are not always so obvious, and we know that we are dealing with a spectrum disorder...something that even those closest to Coley don't quite get...so I can imagine that those hoping that people will 'see' 'understand' and 'donate' NEED the blatently obvious end of the spectrum to do so...

But even with that, I don't think those that land there should have pity either... I don't think they would like it anymore than those at the 'mild' end would...thing is that there IS something to be researched and the only way to get that done is to raise awareness...so slapping someone in the face with extremes, is as you point out a necessary evil. And if pity is what motivates a person to write a check, well, whatever I guess. Thing is the check was written and in the end those collecting it aren't feeling pity they are feeling drive and motivation to make things better, and that's what really matters.

With everything there will be people that don't quite understand, like the rich not understanding the poor, and taking pity on them...in the end there is nothing to be 'ashamed of' with poverty or anything else! You hold your head high, and know that it is the ignorance of the person feeling the pity that should cause the shame!

Hope that helps!
KJ

[Isabelle]

The more "complex" the case the more money they can get. Absolutely right!
But are these severe cases receiving all what they need to get? I doubt it! In my observations, when adults they are sedated for 18, 20 hours and given less activities because the workers are busy.

[Pamster]

Oh Paul, I am so sorry you feel like your autism is something to be ashamed of. I hope it's ok if I talk about my disability. Granted it's not neurological and NOT what drew me to Brain Talk, Autism is what brought me here all those seven years ago. I can empathize with you on this Paul, I feel ashamed at times because I am an amputee. I mean it's not about being grateful to be as blessed as you know you are, it's about how other people react, seeing me out in the world doing my thing getting around.

I often wish I had two legs so people wouldn't be prone towards feeling pity when they saw me. Pity hurts, not sure why, but it hurts as surely as a scowl or a glare, so I really DO understand Paul. From another perspective though, since my disability is purely physical, it's coming from another area of 'the self' in that it's a Body image problem and not a self-image one. But it's still a familiar feeling.

I don't feel ashamed of my son's autism, but I wish he could communicate better and slowly and surely he is coming along fine. I remember the last Comedy Central telethon they had to benefit autism and I also wondered why they didn't show a milder case last year, but I think it's as someone above stated, and the more severe the case, the more attention that is given to it and the more people might be moved to help. I think that is just human nature, to want to help when we see others suffering so badly.

I missed the comedy central show this year but I saw a commercial for it. I hope they did a nice job with it. But the thing I want you to walk away from this reply with Paul is that you're NOT alone, you've got all of us people here who care and understand how you feel. You give so many of us hope that we can help our little ones like you've helped little Mikey.

Oh Isabelle I can't bear that thought, no one deserves to be sedated 18 hours a darn day like that, now THAT is downright hopeless. But I am sure it happens, I know it happens. And that makes me sad for those poor people stuck in a drug induced haze that isn't about keeping THEM comfortable, no it's about keeping the surface of their ocean there in the institution nice and calm, they don't like waves of any kind.