Autism

[Mara]

QUOTE (1-0-0-1-0-0-1 @ Sep 14 2009, 10:09 PM)

QUOTE (The Owl @ Sep 14 2009, 09:43 PM) QUOTE (RushRevisited @ Sep 14 2009, 07:40 PM) Just curious, and I admit I am ignorant on this thread to the tune of about 65 out of 71 pages of posts, so be patient with me - what is wrong with Jenny McCarthy?  Didn't she help raise a lot of money and awareness for autism recently? Again, I am sure I have missed some piece of news on her or something, so be patient with me and maybe someone can explain the disdain for her? go to this site.... and read some of the quotes the woman has made.   http://www.jennymccarthybodycount.com/Jenn...Count/Home.html   (This is what I have against Jenny....... I don't know whats been said in the discourse of this thread) There's been an ongoing debate about the safety of vaccines in the U.S., mainly the sheer numbers of them that are administered to our kids these days, and the fact that they're administered in such a short amount of time. Some feel that young childrens' still developing immune systems can't handle that kind of onslaught. And some feel, if a child has a genetic predisposition to autism, that kind of vaccine onslaught can trigger it. From what I understand, that is merely a theory.   Then there's the whole Thimerosal debate. Thimerosal is a mercury-based preservative that was/is in some of the vaccines. Obviously mercury is a toxic substance, and many felt that Thimerosal, even the small amount that was in the vaccine, was enough to trigger autism. From what I understand that debate is dying down as there wasn't much proof.   GG can confirm or correct anything I've said here. I haven't read up on this stuff in a long time.   I'm just scratching the surface here. Do a search for Jenny McCarthy and thimerosal and you'll see plenty of info written by GG and others. GG can certainly speak for herself, but I believe she has major issues with McCarthy claiming her child is now "cured" of autism.

[Queen of Megadon]

QUOTE (Mara @ Sep 14 2009, 10:57 PM)

QUOTE (1-0-0-1-0-0-1 @ Sep 14 2009, 10:09 PM) QUOTE (The Owl @ Sep 14 2009, 09:43 PM) QUOTE (RushRevisited @ Sep 14 2009, 07:40 PM) Just curious, and I admit I am ignorant on this thread to the tune of about 65 out of 71 pages of posts, so be patient with me - what is wrong with Jenny McCarthy?  Didn't she help raise a lot of money and awareness for autism recently? Again, I am sure I have missed some piece of news on her or something, so be patient with me and maybe someone can explain the disdain for her? go to this site.... and read some of the quotes the woman has made.   http://www.jennymccarthybodycount.com/Jenn...Count/Home.html   (This is what I have against Jenny....... I don't know whats been said in the discourse of this thread) There's been an ongoing debate about the safety of vaccines in the U.S., mainly the sheer numbers of them that are administered to our kids these days, and the fact that they're administered in such a short amount of time. Some feel that young childrens' still developing immune systems can't handle that kind of onslaught. And some feel, if a child has a genetic predisposition to autism, that kind of vaccine onslaught can trigger it. From what I understand, that is merely a theory.   Then there's the whole Thimerosal debate. Thimerosal is a mercury-based preservative that was/is in some of the vaccines. Obviously mercury is a toxic substance, and many felt that Thimerosal, even the small amount that was in the vaccine, was enough to trigger autism. From what I understand that debate is dying down as there wasn't much proof.   GG can confirm or correct anything I've said here. I haven't read up on this stuff in a long time.   I'm just scratching the surface here. Do a search for Jenny McCarthy and thimerosal and you'll see plenty of info written by GG and others. GG can certainly speak for herself, but I believe she has major issues with McCarthy claiming her child is now "cured" of autism. ding ding ding ding! Give that Mara a kewpie doll     She's flip...or at least comes across that way...OOH see? all you have to do is this, this and this and your kid will be fine! yeah, ok, whatever     and just for the record   I dont believe vaccines gave my son autism and I dont really need to know what did.   However, i see no reason not to make mercury free vaccines. And I believe you have the right to follow a schedule of your own, as a parent, where vaccines are concerned.   I DONT believe parents should withhold vaccines.   and that's all i have to say about that

[RushRevisited]

QUOTE (Queen of Megadon @ Sep 14 2009, 11:48 PM)

QUOTE (Mara @ Sep 14 2009, 10:57 PM) QUOTE (1-0-0-1-0-0-1 @ Sep 14 2009, 10:09 PM) QUOTE (The Owl @ Sep 14 2009, 09:43 PM) QUOTE (RushRevisited @ Sep 14 2009, 07:40 PM) Just curious, and I admit I am ignorant on this thread to the tune of about 65 out of 71 pages of posts, so be patient with me - what is wrong with Jenny McCarthy?  Didn't she help raise a lot of money and awareness for autism recently? Again, I am sure I have missed some piece of news on her or something, so be patient with me and maybe someone can explain the disdain for her? go to this site.... and read some of the quotes the woman has made.   http://www.jennymccarthybodycount.com/Jenn...Count/Home.html   (This is what I have against Jenny....... I don't know whats been said in the discourse of this thread) There's been an ongoing debate about the safety of vaccines in the U.S., mainly the sheer numbers of them that are administered to our kids these days, and the fact that they're administered in such a short amount of time. Some feel that young childrens' still developing immune systems can't handle that kind of onslaught. And some feel, if a child has a genetic predisposition to autism, that kind of vaccine onslaught can trigger it. From what I understand, that is merely a theory.   Then there's the whole Thimerosal debate. Thimerosal is a mercury-based preservative that was/is in some of the vaccines. Obviously mercury is a toxic substance, and many felt that Thimerosal, even the small amount that was in the vaccine, was enough to trigger autism. From what I understand that debate is dying down as there wasn't much proof.   GG can confirm or correct anything I've said here. I haven't read up on this stuff in a long time.   I'm just scratching the surface here. Do a search for Jenny McCarthy and thimerosal and you'll see plenty of info written by GG and others. GG can certainly speak for herself, but I believe she has major issues with McCarthy claiming her child is now "cured" of autism. ding ding ding ding! Give that Mara a kewpie doll     She's flip...or at least comes across that way...OOH see? all you have to do is this, this and this and your kid will be fine! yeah, ok, whatever     and just for the record   I dont believe vaccines gave my son autism and I dont really need to know what did.   However, i see no reason not to make mercury free vaccines. And I believe you have the right to follow a schedule of your own, as a parent, where vaccines are concerned.   I DONT believe parents should withhold vaccines.   and that's all i have to say about that We're not planning on getting our kids the swine flu vaccine when it comes out...

[GhostGirl]

Everyone that has commented has been on track.

 

Personally, I agree with QoM - Jenny is very flip. She is extremely wealthy and could afford anything and everything that would help her son. I have worked hard all my working life, and I can't possibly afford the very best treatment. This is the HUGE injustice of autism - the more money you have, the better treatment you get. Not so with almost any other disease...

 

Also, McCarthy talks about her son having seizures early on - some kids with autism DO have seizures, but what she fails to mention very often is that Evan (her son) was diagnosed with epilepsy. Epilepsy that was treated successfully with medication. So was it the diet, etc. that "cured" him? You treat a kid successfully for epilepsy, and I'll bet you see a rapid improvement.

 

I (and many others in the autism world) feel that she has misrepresented Evan's cure, and that she acts like everyone is as rich as she is, and can afford to do what she does.

 

She is also a huge proponent of the vaccine-autism link. We used to think that was a big part of Stephen's autism, but we have since changed our minds after being duped out of thousands of dollars we had to borrow to pay for a promised cure that never materialized, following many of the methods McCarthy praises. We weren't stupid - we were taken in by the snake oil salesmen that prey on desperate parents.

 

That's why I don't care for or respect McCarthy a whole lot. She may have brought another "celebrity face" to the cause, but that's about it.

[Rushman14]

I cant stand watching Jenny interviewed anymore. "Look everyone I cured my son!" while the rest of us desperately try to figure out how to help our children. I also thought vaccines may have caused my daughter's autism but have since changed my mind as well. I don't know what else I can do but watch the slow progress of ABA therapy.

[Queen of Megadon]

@RushRevisited...Me either. And my doctor is relieved. It's the flu...I'm not in that much of a panic about it. He's actually never had a flu vaccine. I HAVE to get the vaccines for work (hospital)

I dont mean those kinds of seasonal vaccines. I mean the big ones that have helped eradicate many deadly diseases.

 

GG is right...and I couldnt think of a way to say it without sounding like a "have not" vs Jenny McCarthy being a "have" Lots of money gets you lots of treatment.

 

Now, that's not to say there arent things available, and I claw and scratch for all i can, but I cant hire a chef to make a completely "autism friendly" diet or build an ABA play room (my dream still)...and there she goes flaunting her "accomplishment" which, as GG says, has a lot of spin to it.

 

My son had seizures early on too, febrile seizures brought on by high fevers...til he was 8. He doesnt have them anymore BECAUSE THEY OUT GROW THEM. Doesnt mean he's cured.

 

This is my boy, this is the card I was dealt...and last week he started high school. He's fab...no matter what.

[Rushman14]

it's now up to 1 in 100!

 

Study: More cases of autism in U.S. kids than previously realized

 

Autism in U.S.

 

[GhostGirl]

QUOTE (Rushman14 @ Oct 5 2009, 12:06 PM)

it's now up to 1 in 100! Study: More cases of autism in U.S. kids than previously realized Autism in U.S.

[1-0-0-1-0-0-1]

QUOTE (GhostGirl @ Oct 5 2009, 05:12 PM)

QUOTE (Rushman14 @ Oct 5 2009, 12:06 PM) it's now up to 1 in 100!  Study: More cases of autism in U.S. kids than previously realized Autism in U.S. Must be something in the water. Or the air. Or the food. Or everything. This country is great in so may ways, but we're poisoning our kids.

[Natch]

QUOTE (GhostGirl @ Oct 5 2009, 05:12 PM)

QUOTE (Rushman14 @ Oct 5 2009, 12:06 PM) it's now up to 1 in 100!  Study: More cases of autism in U.S. kids than previously realized Autism in U.S. Unbelievable...

[GhostGirl]

QUOTE (1-0-0-1-0-0-1 @ Oct 5 2009, 04:17 PM)

QUOTE (GhostGirl @ Oct 5 2009, 05:12 PM) QUOTE (Rushman14 @ Oct 5 2009, 12:06 PM) it's now up to 1 in 100!  Study: More cases of autism in U.S. kids than previously realized Autism in U.S. Must be something in the water. Or the air. Or the food. Or everything. This country is great in so may ways, but we're poisoning our kids. Yes.   I saw a story on "60 Minutes" about coal ash, which is produced by the ton every second in this country (a coal by-product), and about how it's "recycled" into golf courses, plastics, all kinds of places - and it ends up in the groundwater, etc.   But it's perfectly safe! Even though the workers who dispose of it have to wear impervious gloves and respirators. The ash has mercury and all kinds of other fun stuff.   I worry about our world sometimes.

[Rush Cocky]

QUOTE (GhostGirl @ Oct 5 2009, 05:19 PM)

Yes. I saw a story on "60 Minutes" about coal ash, which is produced by the ton every second in this country (a coal by-product), and about how it's "recycled" into golf courses, plastics, all kinds of places - and it ends up in the groundwater, etc. But it's perfectly safe! Even though the workers who dispose of it have to wear impervious gloves and respirators. The ash has mercury and all kinds of other fun stuff. I worry about our world sometimes.

You WANT coal ash (also called fly ash) IN a product, not disposed of in a landfill. Recycling it is the best way to accomplish this (concrete is the biggest user of the ash). And it is not harmful once IN a product.

[Queen of Megadon]

QUOTE (Rushman14 @ Oct 5 2009, 01:06 PM)

it's now up to 1 in 100! Study: More cases of autism in U.S. kids than previously realized Autism in U.S.

i read this today...i'm not sure I'm comfortable with the study...it's too broad and doesnt seem very scientific.

 

And it raises the question...since 40% of those who answered yes to the first question and no to the second, how many doctors are rushing to diagnose?

 

I understand the "better safe than sorry" but it skews the numbers and promotes the "my child was cured" theory.

 

The end of this article, is the silver lining for me,

 

The reports raise "a lot of questions about how we are preparing in terms of housing, employment, social support -- all the issues that many of these people are going to need," said Dr. Tom Insel, director of the National Institute of Mental Health

 

I'm entering this population now...Daniel is in HS and most of the "autism marketing" is for young children. Get to this age, well, now he's just "difficult", and the amount of programs available has dwindled dramatically, or disappeared entirely. And though I didnt know it then, I realize now I need support now more than ever...it's just getting harder to find. Being a teenager is hard enough...try doing it with autism.

 

Let's hope these kinds of studies at least start shining the light on the population entering adulthood. *fingers crossed*

 

 

[Mara]

Largest-ever federal grant for autism research:

HHS Secretary Sebelius on Autism

 

A good step forward, IMO, and money well spent.

[GhostGirl]

Interesting story from the NYT, more about Aspergers than classic autism...

 

A Powerful Identity, a Vanishing Diagnosis

[Queen of Megadon]

QUOTE (GhostGirl @ Nov 5 2009, 11:09 AM)

Interesting story from the NYT, more about Aspergers than classic autism... A Powerful Identity, a Vanishing Diagnosis

good article! thanks for posting

 

Daniel is PDD-NOS, but his current neuro says Aspergers and on paper we say Autism...(call him Spotted Puppy dog i dont care...whatever helps get us the right treatments)

 

PDDNOS, i agree with Temple Grandin, is a pretty useless term. But i'd say group those (my) kids with the Asperger diagnosis...there's LOTS of Aspies out there who would bristle at the thought of being anything else.

[GhostGirl]

QUOTE (Queen of Megadon @ Nov 5 2009, 08:49 PM)

QUOTE (GhostGirl @ Nov 5 2009, 11:09 AM) Interesting story from the NYT, more about Aspergers than classic autism... A Powerful Identity, a Vanishing Diagnosis good article! thanks for posting   Daniel is PDD-NOS, but his current neuro says Aspergers and on paper we say Autism...(call him Spotted Puppy dog i dont care...whatever helps get us the right treatments)   PDDNOS, i agree with Temple Grandin, is a pretty useless term. But i'd say group those (my) kids with the Asperger diagnosis...there's LOTS of Aspies out there who would bristle at the thought of being anything else. I really disagree with officially doing away with the Aspergers diagnosis for two reasons. One, many Aspies are proud of their "syndrome" and should be able to have a rallying point. Two, Aspergers and classic (Kanner) autism are like night and day, IMO.   I get tired of all autism being lumped together, the media playing up the Aspergers/HFA groups, and my son being totally misunderstood because his autism is of the classic, severe variety.   I respect those who want to embrace autism. I admire them, but I can't do it. I f***ing hate autism every day. I would cut off my right arm with a pocketknife to have my son back - yes, I'd love it if he had Aspergers, when I compare that with what he does have.   Ooops. Lemme just hop off this soapbox now. Y'all have a good day.

[Queen of Megadon]

QUOTE (GhostGirl @ Nov 6 2009, 11:00 AM)

QUOTE (Queen of Megadon @ Nov 5 2009, 08:49 PM) QUOTE (GhostGirl @ Nov 5 2009, 11:09 AM) Interesting story from the NYT, more about Aspergers than classic autism... A Powerful Identity, a Vanishing Diagnosis good article! thanks for posting   Daniel is PDD-NOS, but his current neuro says Aspergers and on paper we say Autism...(call him Spotted Puppy dog i dont care...whatever helps get us the right treatments)   PDDNOS, i agree with Temple Grandin, is a pretty useless term. But i'd say group those (my) kids with the Asperger diagnosis...there's LOTS of Aspies out there who would bristle at the thought of being anything else. I really disagree with officially doing away with the Aspergers diagnosis for two reasons. One, many Aspies are proud of their "syndrome" and should be able to have a rallying point. Two, Aspergers and classic (Kanner) autism are like night and day, IMO.   I get tired of all autism being lumped together, the media playing up the Aspergers/HFA groups, and my son being totally misunderstood because his autism is of the classic, severe variety.   I respect those who want to embrace autism. I admire them, but I can't do it. I f***ing hate autism every day. I would cut off my right arm with a pocketknife to have my son back - yes, I'd love it if he had Aspergers, when I compare that with what he does have.   Ooops. Lemme just hop off this soapbox now. Y'all have a good day. GG--   I'm sorry you hate autism so much. I'm sorry it hurts you so much.   Be sure to love the boy though, as I know you do, always and always.     Being HFA does have its advantages, but has its disadvantages...read below.   one forest, many paths

[GhostGirl]

QUOTE (Queen of Megadon @ Nov 7 2009, 10:08 AM)

QUOTE (GhostGirl @ Nov 6 2009, 11:00 AM) QUOTE (Queen of Megadon @ Nov 5 2009, 08:49 PM) QUOTE (GhostGirl @ Nov 5 2009, 11:09 AM) Interesting story from the NYT, more about Aspergers than classic autism... A Powerful Identity, a Vanishing Diagnosis good article! thanks for posting   Daniel is PDD-NOS, but his current neuro says Aspergers and on paper we say Autism...(call him Spotted Puppy dog i dont care...whatever helps get us the right treatments)   PDDNOS, i agree with Temple Grandin, is a pretty useless term. But i'd say group those (my) kids with the Asperger diagnosis...there's LOTS of Aspies out there who would bristle at the thought of being anything else. I really disagree with officially doing away with the Aspergers diagnosis for two reasons. One, many Aspies are proud of their "syndrome" and should be able to have a rallying point. Two, Aspergers and classic (Kanner) autism are like night and day, IMO.   I get tired of all autism being lumped together, the media playing up the Aspergers/HFA groups, and my son being totally misunderstood because his autism is of the classic, severe variety.   I respect those who want to embrace autism. I admire them, but I can't do it. I f***ing hate autism every day. I would cut off my right arm with a pocketknife to have my son back - yes, I'd love it if he had Aspergers, when I compare that with what he does have.   Ooops. Lemme just hop off this soapbox now. Y'all have a good day. GG--   I'm sorry you hate autism so much. I'm sorry it hurts you so much.   Be sure to love the boy though, as I know you do, always and always.     Being HFA does have its advantages, but has its disadvantages...read below.   one forest, many paths Yes, of course HFA has disadvantages. I completely understand. Please don't misunderstand me - I'm not saying any autism is easy. I'm merely saying that the spectrum is so wide that lumping it all in together is a mistake.   And I love Stephen more than my own life. That is never in question.

[Queen of Megadon]

QUOTE (GhostGirl @ Nov 10 2009, 11:49 AM)

Yes, of course HFA has disadvantages. I completely understand. Please don't misunderstand me - I'm not saying any autism is easy. I'm merely saying that the spectrum is so wide that lumping it all in together is a mistake. And I love Stephen more than my own life. That is never in question.

Agreed...there should be distinctions.

 

Dont misunderstand me either...i really was just feeling badly for you that autism hurts you so much and was hoping that story might give you some different insights is all.

 

I was about to say I dont necessarily embrace Daniel's autism, but I guess I do if I'm being honest.

 

I'm amazed at the way his mind works, I'm thrilled when he finally "gets" something, I'm grateful he still thinks its ok to hug me even though he's a teenager, and isnt embarrassed to talk to me about anything, because I dont think he's aware that he "should" be embarrassed.

 

There are a gazillion reasons autism exhausts me, makes me sad, and makes me worry, but no, i dont hate it.

 

Hang in there GG...

 

[GhostGirl]

QUOTE (Queen of Megadon @ Nov 10 2009, 01:28 PM)

QUOTE (GhostGirl @ Nov 10 2009, 11:49 AM) Yes, of course HFA has disadvantages.  I completely understand.  Please don't misunderstand me - I'm not saying any autism is easy.  I'm merely saying that the spectrum is so wide that lumping it all in together is a mistake. And I love Stephen more than my own life.  That is never in question. Agreed...there should be distinctions.   Dont misunderstand me either...i really was just feeling badly for you that autism hurts you so much and was hoping that story might give you some different insights is all.   I was about to say I dont necessarily embrace Daniel's autism, but I guess I do if I'm being honest.   I'm amazed at the way his mind works, I'm thrilled when he finally "gets" something, I'm grateful he still thinks its ok to hug me even though he's a teenager, and isnt embarrassed to talk to me about anything, because I dont think he's aware that he "should" be embarrassed.   There are a gazillion reasons autism exhausts me, makes me sad, and makes me worry, but no, i dont hate it.   Hang in there GG... I understand why you don't hate it. I'm glad you don't. The hate exhausts me.   But Stephen can't talk to me. He can't tell me things. He doesn't hug me, not really. He wears diapers. He screams sometimes, and I don't know what's wrong.   So yeah. I hate autism.   EDIT: and that's enough of my venting for now...we now return you to your regularly scheduled informative thread

[GhostGirl]

[GhostGirl]

Okay, I had to put this here also...I scrolled through many of the over 2,000 comments to see if ANYONE else felt like me. I found these two comments, just for starters:

 

"This video beautifully and powerfully illustrates how our family feels about the invasion of autism into our family and how we work everyday to recover our son. I respect the controversy for some in the community - but until our son lives an uncompromised life with autism - this video is exactly how we feel. "

 

Guess what? 26 negative votes. This response:

 

"Which means you need help. Now. You have the wrong attitude." From the same person who replied to me.

 

And I found:

 

"Sometimes, meanings go deeper than what you see at a glance. If someone in your family has autism in any form, you will grow to hate Autism, not the person it affects. When you see someone struggle with autism, it's deeply disturbing to know that there's really nothing you can do about it. Sure it doesn't kill like Cancer or AIDS, but being unsure as to whether or not your child will even have an independent future is a very disturbing thing to deal with. No one wants that for their child. "

 

Nothing negative on this one yet, but maybe they just haven't seen it. This is basically the same thing I was saying in my comment.

 

What a great way to start a Saturday.

[Mara]

^^^ I'm sorry. Bear in mind, though, the caliber of people who take the time to post mean comments on YouTube. There's no moderation other than what the poster feels like doing, so that site has FAR more trolls than just about anything around. It's asshattery unrestrained.

[GhostGirl]

QUOTE (Mara @ Nov 14 2009, 08:45 AM)

^^^ I'm sorry. Bear in mind, though, the caliber of people who take the time to post mean comments on YouTube. There's no moderation other than what the poster feels like doing, so that site has FAR more trolls than just about anything around. It's asshattery unrestrained.

Yeah, I know...but I've run into this in person too. I feel so misunderstood. As a person who prides herself on being able to clearly communicate feelings, especially in writing, it makes me sick that so many interpret my words in the way they do.