Fluff Factory auctions to support 'Autism Speaks.' Meh. - Mothering Forums

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Old 02-13-2007, 04:40 PM - Thread Starter
 
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I'm not an Autism Speaks fan. Specifically, I don't care for their video, Autism Every Day.

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Don't Speak For Me explains why Autism Every Day is controversial and disliked by many.
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Old 02-13-2007, 05:06 PM
 
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Controversial or not, I am glad that money is being raised for autism research. God knows we need it.
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Old 02-13-2007, 05:24 PM - Thread Starter
 
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I dunno. I think it's like a group that is funding HIV research... while also funding homosexual 'deprogramming' research.
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Old 02-13-2007, 05:24 PM
 
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Controversial or not, I am glad that money is being raised for autism research. God knows we need it.

Have you watched the video? It's a bunch of mothers complaining about how hard their life is and how awful autism is. It shows nothing positive or hopeful at all. One mother actually says she would've killed herself and her daughter with autism if she didn't have a "normal" child who needed her.

Rainbow.gif ~ Molly
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Old 02-13-2007, 05:31 PM
 
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Well, I hardly say that a mom who says she contemplated driving off a bridge is saying that

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the notion of murder being an acceptable response to disability
More that the mom probably needs more help and support. Geez, Brooke Sheilds said that in reference to her PPD and no one is saying that she advocates it as a standard rite of passage in bringing home a new baby. :

Yeah, that video was probably staged some, but I get so tired of people thinking that having Aspergers means my son is just a little quirky and will grow up to be Bill Gates. (and all those bad behaviors they see are merely due to a lack of discipline...) Only those really close to us (and his teachers) understand the daily struggles of dealing with the tantrums, rages, fights and feeling of fristration and desparation. The media sure does not do a good job of showing the real sides of ASD either. So this video just went too far in the other direction.

But everyone is entitled to their opinion. And more money for research is probably a good thing.

Jenn, perpetually tired mom to DS(9): DD(4.5): DD(2) :
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Old 02-13-2007, 05:44 PM
 
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I have to say that I wholeheartedly support Autism Speaks (despite a video that some may disagree with).

My sister's school receives funding from Austism Speaks. It is the only public school in NYC devoted to teaching children with autism.

I hope, too, that my DH may benefit from Autism Speaks' scientific funding. He is applying for a grant from them to do translational research.

As soon as I figure out how the flufffactory auction works, I will be supporting this charity. (even more so if my pg sticks -- I'll be able to buy dipes!)

DS, 10/07. Allergies: peanut, egg, wheat. We've added dairy back in. And taken it back out again. It causes sandpaper skin with itchy patches and thrashing during sleep. Due w/ #2 late April, 2012.

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Old 02-13-2007, 06:25 PM
 
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That video is very misleading..I saw it when my son was newly diagnosed and it scared the piss out of me for days. I was truly freaked out that I was going to turn into a horrible mother and not love and adore my boy because he is "harder" to raise than other children.

I support anything that helps fund more research and awareness about ASD, we need more of that than anything, but I really don't support scaring the living piss out of parents of autistic kids. Elijah is a delightful little boy, as as we learn more about him and what he goes through, we're able to cope a little better with things every day. I don't think he's had a meltdown in weeks thanks to better awareness and therapies, and biomedical stuff. but when he does, it's not a hardship to deal with it.

All I'm sayin' is..that video truly freaked me out..and I did not need that..I needed support..I needed to hear that all ASD kids are like all NT kids in that they are individuals.

That is all.
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Old 02-13-2007, 07:58 PM
 
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Have you watched the video? It's a bunch of mothers complaining about how hard their life is and how awful autism is. It shows nothing positive or hopeful at all. One mother actually says she would've killed herself and her daughter with autism if she didn't have a "normal" child who needed her.
I watched part of it. I'm not saying one thing or another about the video specifically, I am saying that I am glad that more money is going to an organization that supports finding the cause of autism and helping ppl w/ autism to have better lives.

We've all been to places w/ autism that we are ashamed of and do not want to go back to. I'm sure we've all been in tears on many occassions w/ our kids. I'm sure we have all wanted to just run away or give up. I think taking away support from an organization that is trying to HELP our kids is not really going to help anyone.

I have to admit to being a little annoyed that this is coming to light a week before the auctions too. I pushed hard for an autism charity this time... mamas we could raise thousands of dollars for autism research!!! Let's look at the good in this charity rather than one controversial video that was trying to help our kids.
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Old 02-13-2007, 08:33 PM - Thread Starter
 
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I have to admit to being a little annoyed that this is coming to light a week before the auctions too. I pushed hard for an autism charity this time... mamas we could raise thousands of dollars for autism research!!! Let's look at the good in this charity rather than one controversial video that was trying to help our kids.
I still can't get behind it. Their 'one controversial video' is how they want to be perceived and how they perceive autism. I don't trust how they will use those thousands of dollars. Maybe to make more skewed and dishonest videos? Who knows?



I usually promote Fluff Factory things. I can't this time.



And I'm also sorry Fluff Factory didn't learn this earlier. It's been a reaction since the film was released, and hardly unknown. Pity.
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Old 02-13-2007, 08:41 PM
 
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Wow Phoebe
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Old 02-13-2007, 08:47 PM - Thread Starter
 
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It makes me feel sad too Julie
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Old 02-13-2007, 09:29 PM
 
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HUGS julie.

the article i read about the movie said that they told parents not to dress up, and not to do their hair and not to bring their therapists in. maybe for those parents those are REAL days when they don't have help. what might be one's reality might be "exaggerated" to another. to say that one's reality is a lie is hurtful too. maybe something was taken to the extreme, but maybe those moms felt they could be honest because it was to an audience that they share something with?? i don't know.

i do know that i'm not going to assume that it was made up and that whatever money we raise will go towards more made up movies or made up information. raising this money means a lot to a lot of people, and i really want to be able to help in any way, shape, or form.

i hope that others can see that we are trying to raise money for autism research, pure and simple.
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Old 02-13-2007, 11:55 PM
 
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the article i read about the movie said that they told parents not to dress up, and not to do their hair and not to bring their therapists in. maybe for those parents those are REAL days when they don't have help. .

I think they were trying to get the parents to show real life, not just some dressed up version of their day. I dont do my hair, wear makeup and who the heck are these therapists that come help out? Therapy for us was lugging 2 kids across town and trying to occupy a toddler in a waiting room for an hour. Certainly not helpful. And for those of you who have never had desolate thoughts...(and mine center more around me running away, not hurting anyone) good for you. I have been willing to sell my soul to the devil himself on many occassion if he would just take away my sons aggression. Quirky, I can handle. Socially awkward, I can work with. Pragmatic speech delays...covered. Throwing a random toddler off a moving ride at Chuck E Cheese for no reason and having to face said toddlers angry mother who followed me out to the parking lot while I am crying and yelling at my son...thats reality for me.

Jenn, perpetually tired mom to DS(9): DD(4.5): DD(2) :
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Old 02-14-2007, 03:03 AM
 
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(((Jenn))) The aggression sucks. We also have had periods of compulsively hitting, crashing into or biting people--it's not really aggression because it's more that he gets the idea in his head and has to do it, there's no anger involved.

I'm actually not in favor of the video but wanted to offer hugs on the personal experience front!

Sherri
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Old 02-14-2007, 05:25 AM
 
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I have been willing to sell my soul to the devil himself on many occassion if he would just take away my sons aggression. Quirky, I can handle. Socially awkward, I can work with. Pragmatic speech delays...covered. Throwing a random toddler off a moving ride at Chuck E Cheese for no reason and having to face said toddlers angry mother who followed me out to the parking lot while I am crying and yelling at my son...thats reality for me.
I could not agree with you more.
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Old 02-14-2007, 06:19 AM
 
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I have a son with Aspergers. I feel you. How old are your kids? My son is now almost 11 and with gf cf we get through the day good. There are still times when I want to pull out my hair. i homeschool now and it has taken alot of the pressure off. He feels safe with me and not at school. He still argues alot but has never been agressive. He used to be sooo scared to the point of freeking of change of routein, now hes not scared just argues about it.Used to hide under desks in closets stand up and start barking in class, Wouldnt try new clothes and was truly just strange. Now hes mostlly just strange but I wouldnt have it any other way. Like alot of kids with aspergers he is insanely smart......but I still worry about his future. He still has social issues, but gets along fabulously with older people. His obsessive behaviour worries me though........But I remember the everyday fight thing...living in survival mode!!
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Old 02-14-2007, 09:16 PM
 
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Have you watched the video? It's a bunch of mothers complaining about how hard their life is and how awful autism is. It shows nothing positive or hopeful at all. One mother actually says she would've killed herself and her daughter with autism if she didn't have a "normal" child who needed her.
OK, that's not what she was saying *at all*--she said that she'd drive off the bridge rather than leave her in a school like the one they'd just visited.

I too thought the film was a little heavy handed--if I'd been one of those (strong, articulate, straightforward) mamas, I would have been more than a little pissed that I'd been used to emotionally manipulate rather than educate.
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Old 02-15-2007, 01:15 AM
 
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Yes, because a video showing kids with autism on their great days and parents looking polished and driving land rovers would garner SO MUCH money for autism research. :

You know, autism is not like children with cancer or CP or DS or some other heartbreaking issue. You can't LOOK at an autistic child and see the need for funding the way you can look at the child with cancer in a hospital bed after chemo or a DS child with their beautiful unique facial features, or a child with CP in a wheelchair. All of those images impact because the SURROUNDINGS (hospital bed, wheelchair, etc) help tell the story. Autism Speaks had to SHOW the struggles with autism, had to reach people EMOTIONALLY, since that is where people's desire to contribute comes from.
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Old 02-15-2007, 08:59 PM
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My biggest problem with the video is the emotion it seems to want to illicit the most- PITY. FWIW, I don't want or need anyone's pity. More than anything, I would most need understanding of how complex it can be having a child on the asd. There are ways to reach people on an emotional level other than pity <sigh>
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Old 02-15-2007, 11:15 PM
 
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My biggest problem with the video is the emotion it seems to want to illicit the most- PITY. FWIW, I don't want or need anyone's pity. More than anything, I would most need understanding of how complex it can be having a child on the asd. There are ways to reach people on an emotional level other than pity <sigh>
:

Not all attention is good attention, and all charities don't have the people they are trying to help best interests in mind.
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Old 02-15-2007, 11:25 PM
 
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Yes, because a video showing kids with autism on their great days and parents looking polished and driving land rovers would garner SO MUCH money for autism research. :

You know, autism is not like children with cancer or CP or DS or some other heartbreaking issue. You can't LOOK at an autistic child and see the need for funding the way you can look at the child with cancer in a hospital bed after chemo or a DS child with their beautiful unique facial features, or a child with CP in a wheelchair. All of those images impact because the SURROUNDINGS (hospital bed, wheelchair, etc) help tell the story. Autism Speaks had to SHOW the struggles with autism, had to reach people EMOTIONALLY, since that is where people's desire to contribute comes from.
Exactly. How many of us have heard the comment "s/he doesn't look autistic" (the thread with that title will show MANY of us have heard it) or "Well she/he looks normal to me" or "S/he just needs discipline", etc etc. Personally, I liked the movie. I think they did a great job showing the struggles of living day to day with a child with autism.

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Old 02-15-2007, 11:39 PM
 
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I wasn't aware that autism was supposed to be all pretty and happy sounding for everyone? I also wasn't aware that mothers with autistic children weren't entitled to feelings of hurt, anger, frusteration, and devistation...

I liked the video...it showed the real every day for LOTS of families. I worked with the most severe autistic cases imaginable...kids and adults that were sent away from their families because they were a huge risk... My own son has autism. It is HARD. There are days--many days--that I wish he didn't have autism. I'm not one who says "oh, he's autistic, that's just part of his charm". I am a clinical mental health professional and autism is a disease the same way bipolar or schizophrenia is--I certainly wouldn't just say "oh, my son's schizophrenia, that's just part of his charm".

It's HARD to have a child who doesn't know you exist half the time. It's HARD to have a child who would literally kill himself because he can't respond to pain. It's HARD to miss everything and be isolated from friends because your kid can't handle being around other people and you're driving 200 miles a week and spending thousands a month on therapy so you become completely cut off from the rest of life and civilization. It's HARD when those "terrible 2's tantrums" continue day in and day out for YEARS because you accidentally turned right when you walked into the grocery store verses turning left. It's HARD to have your face gouged and blood spilling from your face because yet again, your child is tantruming because his teacher put tape on his paper. It's HARD to hear your child's peers cry to their moms that they are scared of your child. That is MY life. And every single mother in that video is ENTITLED to her feelings about it, whether those feelings were pretty and comfortable for all of those who don't walk their shoes on a daily basis.

Bravo to Fluff Factory for supporting autism research...one day I want my son to be able to enter a room of people and actually enjoy himself rather than cowering in fear. I fully intend on supporting Fluff Factory's auctions, and all organizations that work to find a cure, raise awareness, and help prevent our children from falling into their own dark worlds...

~Brandon Michael (11/23/03), Jocelyn Lily Nữ (2/4/07, adopted 5/28/07 from Vietnam), Amelia Rylie (1/14/09), & Ryland Josef William (9/7/05-9/7/05 @ 41 wks). 
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Old 02-16-2007, 12:59 AM
 
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I wasn't aware that autism was supposed to be all pretty and happy sounding for everyone? I also wasn't aware that mothers with autistic children weren't entitled to feelings of hurt, anger, frusteration, and devistation...
Apparently, you have a lot of those feelings. In fact, based on your post, seeking some help for those extremely strong feelings might be in order. However, your feelings about your son's autism are exactly that... your feelings about your son's autism. Presenting them as fact on a public forum may focus attention on you hurt, anger, frustration and devastation, but it isn't really helping to elevate the dialogue on autism beyond the level of hyperbole and sensationalism. Belittling parents who are more accepting of their child's differences is simply unnacceptable. I'm certain you wouldn't want your responses to the stress of autism derided by another parent.

Philosophical discussion about whether the mother in the video "really meant" that she would kill her child or not is all very well, until we remember that many children with autism have been killed by their parents. It isn't a hypothetical situation. It happens. Presumably, it happens because a mother elevates feelings like anger and disappointment and allows them to dictate her actions.

Believe me, if I could wave a magic wand and grant everyone who "suffers the tragedy of autism" a nice little cuddly touchy-feely neurotypical kid, I would. As it stands, I'd like to thank you for re-awakening my political conscience. Whenever I feel the urge to drop the advocacy bit and get a different hobby, I just come over here and realize how sad the current state of affairs truly is.

I genuinely don't care if this post violates any of the bizarre strictures of this board or not--strictures in which it's perfectly all right to malign an entire group of people, but somehow wrong to point out such treatment.

This really just sickens me.
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Old 02-16-2007, 01:04 AM
 
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Have you seen this site? http://www.gettingthetruthout.org/ I thought it was interesting, but you have to read the whole site in order for it to make sense.
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Old 02-16-2007, 01:04 AM
 
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Apparently, you have a lot of those feelings. In fact, based on your post, seeking some help for those extremely strong feelings might be in order.
I have plenty of help, thank you very much. Fortunately, there are a lot of friends and therapists out here that understand that raising a special needs child is hard, isolating at times, expensive, and frusterating.

I just don't get why people seem to think that nobody else is entitled to any sort of negative feelings regarding autism. You can bet that if my son had cancer or if he had schizophrenia or if he had an illness that would make him a quadrapeligic, I would be very angry--I'd want to find him a cure, and I would be frusterated that he couldn't enjoy his childhood. Not everyone can feel all rosy posy happy that their child is miserable outside of the house. Not everyone can feel warm and fuzzy that instead of being a child and playing with friends, their child is hiding in the corner scared of all of the other kids in the classroom, and all of the other kids are scared that your kid will hurt them.

I'm not belittling ANYONE...I'm saying that every parent has the right to feel his or her own feelings. If the mothers in the video are angry and devistated, that's their right. If you are perfectly accepting, FINE...that's your right. But everyone has the right to feel their feelings, and that video showed a lot of people that autism isn't always pretty. That behind the smiling controlled mother is sometimes a mother who is isolated, fearful, and desparate for some understanding and help. For every mother that is understanding and accepting of their child's autism, there is a mother wishing that her child was able to experience the world without fear that everything is too loud, too fast, and too dangerous... I think it's more belittling to tell a woman that she can not feel anything negative...that those feelings are not acceptable. Feelings are feelings...they are what they are and they should be felt.

And yes, some parents of autistic children have killed their children--it doesn't mean that all frusterated parents of autistic children will kill their children. Just like not every person with postpartum psychosis will kill their child.

It does nothing for advocacy to tell everyone who disagrees with you that their feelings are wrong...you do not walk in my shoes. You don't know what *my* son's autism is like for me or him. You only know your own life, your own experiences with your child, and your own feelings--you have the right to feel those feelings, just as I have the right to feel mine. It's not sickening that other people don't agree with you. It's more sickening that people are told that their feelings are wrong and shouldn't be felt.

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Old 02-16-2007, 01:10 AM
 
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However, your feelings about your son's autism are exactly that... your feelings about your son's autism. ..... Belittling parents who are more accepting of their child's differences is simply unnacceptable. I'm certain you wouldn't want your responses to the stress of autism derided by another parent.
Where was she belittling other parents? I must have missed that so, please, point it out for me.

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I genuinely don't care if this post violates any of the bizarre strictures of this board or not--strictures in which it's perfectly all right to malign an entire group of people, but somehow wrong to point out such treatment.

This really just sickens me.
Then why post at all? Why not click out of the thread and leave it be? Is causing hurt to someone else really that important to you? If so, I would really suggest you get some help to deal with your issues with anger and frustration.

Steph, DH Jason (1-1-11), DS Owen (10-3-03) and DS Kai (10-13-11)

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Old 02-16-2007, 01:12 AM
 
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I think it's more belittling to tell a woman that she can not feel anything negative...that those feelings are not acceptable. Feelings are feelings...they are what they are and they should be felt.
Sure, fine, by all means. Feel whatever you like. However, when feelings cross the line into statements of discrimation, our society calls it hate speech.
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Old 02-16-2007, 01:23 AM
 
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Sure, fine, by all means. Feel whatever you like. However, when feelings cross the line into statements of discrimation, our society calls it hate speech.
Um....ok... : It's really not hate speech to say that it's ok to be frusterated, concerned, isolated, whatever.... It's not hate speech to say that one supports research into a condition listed in the DSM-IV as a classified psychological disorder. I am a mental health professional...it is my job to do research into things classified as psychological disorders. Until one day it is found that autism is merely a personality trait no longer classifiable in the DSM (which has happened in the past with other aspects of personality/mental health), then it will be researched. This just happens to be a cause I support.

It's really an odd leap you make from getting discrimination and hate speech from a parent of an autistic child feeling frusterated that her child can't enjoy childhood without being feared and fearful of things that aren't really feared by most children. Like I said, I would feel the same concern if he had a severe anxiety disorder, schizophrenia, bipolar, clinical depression, cancer, tetunus, whatever--I'm his parent. It's my job to be concerned with his well-being. I also lived the hell of severe postpartum depression and post traumatic stress disorder--I know the hell that severe anxiety can bring--I know that if my son feels even a tenth of that same anxiety hell, then I need to do what I can to help him. Without feeling guilty that somehow I'm betraying this unspoken rule that children with autism shouldn't be helped when those autistic tendencies hinder their development or cause them pain. But if it was "just" a speech delay or "just" a motor skills delay, that somehow, that would be an acceptable thing to advocate help for and feel frustration from.

I do find it fairly sad that in the special needs forum, one can't express frustration at the trials that come with aspects of raising a special needs child without being deemed a discriminatory person spewing hate speech.

~Brandon Michael (11/23/03), Jocelyn Lily Nữ (2/4/07, adopted 5/28/07 from Vietnam), Amelia Rylie (1/14/09), & Ryland Josef William (9/7/05-9/7/05 @ 41 wks). 
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Old 02-16-2007, 01:27 AM
 
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Originally Posted by Individuation View Post
However, when feelings cross the line into statements of discrimation, our society calls it hate speech.
I must be real slow today so please spell it out for me.... where are you getting this from? What feelings crossed that line?

Steph, DH Jason (1-1-11), DS Owen (10-3-03) and DS Kai (10-13-11)

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Old 02-16-2007, 01:28 AM
 
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Originally Posted by StephandOwen View Post
Where was she belittling other parents? I must have missed that so, please, point it out for me.

Sure, here you go:

I'm not one who says "oh, he's autistic, that's just part of his charm". I am a clinical mental health professional and autism is a disease the same way bipolar or schizophrenia is--I certainly wouldn't just say "oh, my son's schizophrenia, that's just part of his charm".

Obviously, AllyRae is referring to parents who are accepting of their children as autistics and don't seek a "cure." She's presenting such parents as the sort who blithely dismiss their child's autism as "part of his [or her] charm," and completely ignoring the difficulties and challenges that these parents have gone through... apparently only parents who view their child's autism as a curse have difficult lives.

Steph, I think you know that I speak up on this issue only when I feel there's a serious need, and I'm sure you realize that's why I posted on this thread. I also know that you and AllyRae are related (cousins? sisters?) and thus you know far more about her personal situation than I do and might understandably respond to the idea that someone you're close to is being "attacked." I really think that if you take what I've said in the spirit it was meant and in the context of my views on this issue, it might be worth thinking over.

Steph and AllyRae, you both should know me well enough to know that I'm not a fanatically "ND" wacko screaming "All therapies are abuse!" You both have a very good sense of the difficulties your children deal with as they interact with the world around them, and (from what I've heard from you) fairly humane and realistic ways of addressing those difficulties. However, if nothing else, I would think you might be a bit more tolerant of my views on the subject if you consider that the world your children will eventually have to inhabit, a world in which they may or may not live independently, have friendships and romantic attachments, attend universities or have careers, will be MUCH easier for them if more people think as I do. Call me an indealist or a b*tch or an autie wierdo if you like, but if acceptance and accomodation of autism (YES with therapies to help the autistic person deal with the world) become the norm, your children will have far better lives.
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