Autism Speaks really bugs me.

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Registered: 11-28-2006
Autism Speaks really bugs me.
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Mon, 04-30-2007 - 2:27am

Renee started a thread that made me think.....

I have never spoken really what I thought about Autism Speaks, but here goes.

I'm upset that a mother said she actually thought of killing her autistic child, but the thing that stopped her was her other NT child....

I also belong to another autism site which has mostly adult autistics and they really put down Autism Speaks. They don't like them because they don't have acceptance, which their own parents didn't have acceptance.

Here's the link..... Tell me what you think.

http://www.youtube.com/watch?v=liAuBpJYckc

Lainie

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Registered: 07-12-2005
Mon, 04-30-2007 - 5:53am

I didn't watch the video, and I'm not going to. I've seen way to much of Autism Speaks to think any higher of them than I do the ant hill in my back yard. I have my own personal oppinions of them, and they are very, very negative. But I'll keep them to myself since this is a support board, and I don't want to offend anyone who might support the organization.

But let's just say, the fastest way to make my AS DH hiss (homest to the gods hiss), is to mention Autism Speaks.

~Candes

APOV on Autism

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Registered: 05-16-2006
Mon, 04-30-2007 - 7:59am

I have my moments where I love it OR hate it.
I do hate the mom who mentions killing herself and child. WTF?
She was on Oprah too, and the woman just irritates me. She always has the "pity me" attitue.
They don't accept what God's dealt them. Once you fully accept what you have you are able to have an easier time going through the motions. It's a new way to parent.

Nora

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Registered: 03-26-2003
Mon, 04-30-2007 - 10:51am

Hehehe, I started it again didnt I.

Well let me take this from a different avenue.....

Our kids are kids first. They are people who happen to have autism. That has it's bad and it's good points. I will never say having an autistic child is easy but they are my children and I adore them, autism and all. Heck sometimes their autism is just plain neat, they are cool kids but so are my NT kids. They are all kids.

My problem with autism speaks is that I get the distinct feeling that these children are not children to be cherished as children, rather they are things to be saved from some dreaded alien.

The university I go to is HUGE on people first. Not only language but in the very thinking. It is NOT an CP child, an autistic child, a special needs child. CP, Autism or special needs are not the central part of all that makes the child. They are a CHILD with cp, autism or special needs.

Maybe it is a pendantic way of saying things but it really got me to think, do I think of people with special needs as Tom, Sue, or Harry who happens to have ..... or do I think of them as the autistic kid, the wheelchair kid.

Are they people or diseases? Beyond just the autism argument of whether or not autism is something which needs curing, it is the attitude that is taken. I don't know why it is such a huge deal this curing thing with autism. Never heard of parents of kids with down syndrome doing weird dangerous stuff to "cure" them. Rather they educate them so they can be the best person they are meant to be (and many of them are better people than me).

At anyrate, my oppinion on this goes beyond autism specific, it is just autism where this seems to be the biggest argument. It is as though autism is a cancer which must be cut out rather than a special need to be accomodated or taught in a different manner.

ok, soap box finished.

Renee

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Registered: 06-25-2003
Mon, 04-30-2007 - 11:15am

Lainie,


I watched the link to the video you posted.


Then I went to the official Autism Speaks site and watched the full video.

-Paula

visit my blog at www.onesickmother.com
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Registered: 03-16-2006
Mon, 04-30-2007 - 1:09pm
I'm new to this board. What is Autism Speaks?
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Registered: 06-25-2003
Mon, 04-30-2007 - 1:20pm
-Paula

visit my blog at www.onesickmother.com
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Registered: 06-02-2004
Mon, 04-30-2007 - 2:40pm

I have mixed feelings about Autism Speaks. On the one hand, I think it's great that they are getting the word out. I wish that I had known about the "red flags" sooner and maybe I wouldn't have spent years thinking that I was reading too much into Lily's issues. On the other hand, I don't like how they portray autism to be like some kind of death sentence. There is one part of their web site, I can't remember which heading it's under, that says that when a parent finally hears the official dx of autism, that it is devastating. Maybe it's just me, but I didn't feel suddenly devastated. In a way, I actually felt relieved that I wasn't crazy and that my concerns had been validated. That's not to say that I was glad that I now offically knew Lily had PDD-NOS, but it's not like I was shocked by it. My husband and I already had a strong feeling that Lily probably had some type of ASD. Of course, I can only assume that if I had a baby who was dx'd with a very low-functioning type of ASD, then maybe I would feel differently. I try to put myself in the shoes of that mom who was talking about driving herself and her child off of a bridge. But to be honest, I just really don't get it. There was an entire week (which felt like an eternity) where my dh and I were told that Lily had a progressive neurogenerative disease, like lou gherigs. This particular disease was going to rob her of any milestones she had managed to meet and would eventually rob her of eyesight, hearing, etc. Thankfully, the dx was wrong. But for an entire week we thought we would lose her within the next year or so. As horrible as that was, I never thought about driving off a bridge. I guess that's why I have a hard time understanding. I have several online friends whose children have terminal illnesses. They are some of the most positive people I know. Not that they don't grieve, but they have moved to the acceptance phase of the grieving process and they are making the best lives for their children as possible. As scary as an autism dx can be, at least we still have our children with us. Then again, like I said before, maybe the reason I don't get it is because we are constantly seeing improvements in Lily and I don't know what it's like to never see my child smile. Sorry I didn't mean to get on a soapbox. I think I'll stop here before I say too much.

Amy~Natalie & Lily's mom

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Registered: 04-28-2007
Mon, 04-30-2007 - 9:22pm

I guess when you think of the 6 stages of grief, (shock, denial, anger, bargaining, sadness, acceptance) autism speaks still vascilaites between anger and bargaining. Btw: these stages aren't concrete, one can wander back and forth among them for a while.

I take issue with Autism Speaks as they seem to depict the worst of the worst scenarios and the most debilitating of the spectrum out there. They really do seem to ignore or pay poor homage to the higher end of the spectrum, and I guess it's easy to do that when you have a child who is non-verbal, and low functioning. Stiil Autism speaks does seem to have a rather large chip on its shoulder. They are simply at the "must do do do and change the world stage" that often stems from the angry stage of grief. True, they are raising huge awareness and huge globs of cash, however they didn't help me when my Dad questioned Liam's dx (aaaagain) and cited what he'd heard from the Autism Speaks founders. Kind of put me back in square one with him, kwim?

Dee

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Registered: 12-22-2003
Mon, 04-30-2007 - 10:14pm

I think my opinion of Autism Speaks was best expressed in my post regarding my time in Oprah's audience, so I won't revisit my feelings at length.

The short version...yeah, they raise lots of money and lots of awareness...BUT, and I realize I'm starting to sound like a broken record here, autism is not life threatening. Yes, it's tough being a spectrum parent, but compared to those parents who have watched their children die from horrible illness, I feel pretty darn lucky to only be dealing with autism.

Simple minded? Perhaps...but it's hey, it's how I feel.

Amy

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Registered: 07-12-2005
Mon, 04-30-2007 - 10:54pm

Okay, I will chime in and point out one thing that REALLY bothers me about them. And mostly because of how everyone else is reacting to it.

So far, just in this thread alone I've seen the "Well, if your dealing with the more sever end of the spectrum..." type comments.

I AM one of the moms who's dealt with the more sever end of the spectrum. I've had the kid who was completely non-verbal and couldn't express something as simple as 'I hurt'. I've dealt with the extreme issues and the violent eppisodes that never seemed to end. I've experienced the absolute despiration to find an answer... ANY ANSWER. But ya know, at some point you have to get a grip and realize that playing the Poor Poor Pitiful Me game isn't doing your kid, or you, any good. You have to move forward and look for realistic answers, things you can do TODAY, and stop wishing for that magic pill or perfect solution, becasue it may never come.

Now, don't get me wrong. I feel nothing but compasion for those who are still going through the heart shattering portions of coming to grips with what's going on in their lives. But, I don't think it's appropriate for a person, a family, or a company to go out on a media campaign while their still experiencing that blue hot rage and despiration. It sends the wrong message.

And for what it's worth, speaking as a mom who's BTDT with the sever end... Autism Speaks does NOT speak for me. I don't agree with well over half the things they say. Dealing with the 'sever end' is no excuse to be so incredibly irrational and irrisponsible with a multi-million dollar media campaign. I don't care HOW rich the family is, they don't have the right to spread their grief all over the nation. And they especially do NOT have the right to tell the naiton that all parents of autistics feel the same way.

Okay, done ranting.

~Candes

APOV on Autism

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