Debate on acceptance/treatment

Discuss autism theories, media stories, and efforts to put ASD on the government agenda here.

Moderator: ModeratorBill

Forum rules
Please limit quotes from articles to five paragraphs. Also, researchers may post study information here.
Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Postby Winnie » Tue May 30, 2006 6:15 pm

Give A Mouse A Cookie,

Don't leave.

I enjoy your perspective. I suspect as many of these children age and have increasing contact with the NT world, the concept of acceptance will be increasingly valued by parents. In the event that a child is not "cured" or "recovered," parents may not want society to view them as a suffering shell of a person.

I did not love the Autism Every Day video. I am not judging the parents in the video, but I'm not sure that this PR direction will be beneficial for our children in the long run. Yet another reason that I think your perspective is important. Just my opinion.

You have also pointed out via your experiences that autism is not a static condition. Children are not in suspended animation -- they do make progress in spite of not participating in intensive therapy programs or biomed regimens. I think that it is important for all of us to be reminded of that.

And I enjoy your wit tremendously. :)

Don't leave...
Winnie
"Make it a powerful memory, the happiest you can remember."

2boys2
Posts: 926
Joined: Mon Jan 30, 2006 1:25 pm

Postby 2boys2 » Tue May 30, 2006 6:51 pm

sashasmom wrote:Oh and Bill I have an email address to an autistic man in his 30's that spoke at a seminar I had on autism who was tramatized by being restrained. He says that he has memories of this as young as 18 months old. If you would like to email him then send me an email and I'll be glad to pass along his email. He has never done biomedical and is holding a full time job with early intervention so if you are not pro-biomed he will not have anything to say about it, just incase you were interested in emailing him but didn't want to talk biomed.
-Crystal

my son mostly recovered too tells me now all the things he hated when he was in therapy and how hard it was to sit and do soooo much. when i think of it so many years later i put it like this:would you have made your nt child do all that stuff for "training" like you did or are doing to your asd son or daughter? our results came with biomed first and we didnt even do the full aba just vb a kinder natural environment approach, imagine what he would be telling me today? he does tell me remember when i took all those pills? and i say yes, he says i didnt mind as he watches his brother do it now.
Lisalynn
keeping hope and faith through it all.

Mary
Posts: 472
Joined: Fri Feb 25, 2005 8:28 am

Postby Mary » Tue May 30, 2006 7:05 pm

2boys2 wrote:
sashasmom wrote:Oh and Bill I have an email address to an autistic man in his 30's that spoke at a seminar I had on autism who was tramatized by being restrained. He says that he has memories of this as young as 18 months old. If you would like to email him then send me an email and I'll be glad to pass along his email. He has never done biomedical and is holding a full time job with early intervention so if you are not pro-biomed he will not have anything to say about it, just incase you were interested in emailing him but didn't want to talk biomed.
-Crystal

my son mostly recovered too tells me now all the things he hated when he was in therapy and how hard it was to sit and do soooo much. when i think of it so many years later i put it like this:would you have made your nt child do all that stuff for "training" like you did or are doing to your asd son or daughter? our results came with biomed first and we didnt even do the full aba just vb a kinder natural environment approach, imagine what he would be telling me today? he does tell me remember when i took all those pills? and i say yes, he says i didnt mind as he watches his brother do it now.


How old are your boys now?

VB wasn't around when we were starting this, but I'd like to hear how it's different, since it sounds like you've done both, right?

Mine actually enjoyed their ABA programs, especially the therapists, a group of really fantastic and fun college students. They wish they weren't on the GFCF diet, because they think I would allow them to eat Doritos, and candy and McDonald's hamburgers. Ha! Even if they weren't GFCF, I wouldn't let them eat that stuff. :lol:

mom_of_an_autie
Posts: 734
Joined: Sat Apr 01, 2006 6:18 pm

Postby mom_of_an_autie » Tue May 30, 2006 7:25 pm

Mary wrote:
Mine actually enjoyed their ABA programs, especially the therapists, a group of really fantastic and fun college students. They wish they weren't on the GFCF diet, because they think I would allow them to eat Doritos, and candy and McDonald's hamburgers. Ha! Even if they weren't GFCF, I wouldn't let them eat that stuff. :lol:



Mary that made me laugh! I WISH my son wasnt on the GF/CF/SF/EF/PF (gluten-casein-soy-egg-peanut free) diet. I dont know anyone who would "torture" themselves this way willingly. I have had some parents at my son's preschool functions comment on "my poor baby" who doesnt get to eat junk food......LOL....he wouldnt eat it either if he could....

dgdavis64
Posts: 5241
Joined: Sun Mar 20, 2005 11:51 pm

Postby dgdavis64 » Tue May 30, 2006 9:16 pm

Cookie said:

"I have found the banter exhilarating."


Well, what happened to all your exhilaration? Oh, it must only be exhilarating when other people are doing all the bantering.:wink:

Beware of the pharma trollbot shills posting from anonymous proxy servers

BTDT
Posts: 3492
Joined: Tue Dec 20, 2005 8:02 pm

Postby BTDT » Tue May 30, 2006 9:51 pm

He'd be sitting on the floor banging his head for who knows how long. Running (on tip toes)around flapping his hands screeching at the top of his voice.
Constantly making this humming sound covering his ears. Lining up everything he gets his hands on.
Putting his hands/fingers in front of his face watching them go back and forth.
Oh yeah, and he'd be on Risperdal, a very dangerous, untested drug (for kids)


I just feel like I need to tell you that this is very offensive to parents who do have children who act this way. Are these children any less valuable?

BTDT
Posts: 3492
Joined: Tue Dec 20, 2005 8:02 pm

Postby BTDT » Tue May 30, 2006 10:02 pm

And Mouse,

I hope you don't leave too. Us gossipers and bickerers need to stick together. :)

Susan'sHope
Posts: 901
Joined: Sat Oct 15, 2005 1:46 am

Postby Susan'sHope » Tue May 30, 2006 10:37 pm

Mouse,
I hope you stay too. But I definitely don't think there is any need to bicker or gossip :) .
Knowledge Without Experience Is Just Information ~ Mark Twain

LM
Posts: 848
Joined: Thu Jan 26, 2006 10:54 pm

Postby LM » Tue May 30, 2006 10:53 pm

Mouse,

Being the perennial fence rider that I am, I find your posts refreshing and very grounded in reality.

I don't post lately because we are dealing with a bunch of bad behaviors with my son as of late - biting, tantruming, the whole nine (serves me right for publicly announcing how great my son was doing :) I must be on a smite list somewhere :) ). But anyway, through all of this, it's difficult to see the beauty in your child when he's pinching a piece of flesh out of your cheeks for not letting him go outside, or throwing an atomic tantrum because he wants to go into the adult pool instead of the kiddie pool. But then I read posts such as yours that remind me of all of the really great things about my son and autism and suddenly I don't feel like my happy little Holland world is imploding. Keep doing what you're doing, some of us appreciate it :)

dgdavis64
Posts: 5241
Joined: Sun Mar 20, 2005 11:51 pm

Postby dgdavis64 » Tue May 30, 2006 11:35 pm

BTDT wrote:
He'd be sitting on the floor banging his head for who knows how long. Running (on tip toes)around flapping his hands screeching at the top of his voice.
Constantly making this humming sound covering his ears. Lining up everything he gets his hands on.
Putting his hands/fingers in front of his face watching them go back and forth.
Oh yeah, and he'd be on Risperdal, a very dangerous, untested drug (for kids)


I just feel like I need to tell you that this is very offensive to parents who do have children who act this way. Are these children any less valuable?


What kind of question is this? Did you MISS the POINT of what I was saying about MY SON? Explain to me what exactly is so offensive to you?

Beware of the pharma trollbot shills posting from anonymous proxy servers

merry
Posts: 346
Joined: Sat Dec 31, 2005 1:55 am

Postby merry » Wed May 31, 2006 1:24 am

Mouse,
I think that you feel like you were being attacked and because of that you are on the defensive. Leaving won't change that feeling for long-"the grass is always greener on the other side." Just stick to your convictions and plod along like everyone else here remembering that we all want the same thing in the end. Your children are very lucky to have a mother with so much passion for her children. My advice (for what it's worth) would be to stay here (because you have much to offer us) and try to forget the unhealthy parts of this current debate, and don't refer to "old" issues in future ones. Agree to disagree. Don't give up on this forum. Take a break and come back refreshed and renewed. Good Luck and God Bless!! :D



LM,
We have been having more behavior, hyper and impulsive difficulties with our son lately too. Must be something in the air. :lol: He shot out all the lights in the diningroom with his squirt gun (he found out that hot lightbulbs and cool water don't mix) and then ran outside to hide, rolled up in the fetal position when we found him, because he was terrified by the explosion of glass. Ugh!!! Just when everything is going smoothly something else happens. Oh well, such is life with children. :D Merry
Merry mom to A-14 yo boy with autism and type 1 diabetes

LittleManzParents
Posts: 2317
Joined: Fri Apr 21, 2006 4:27 am

Postby LittleManzParents » Wed May 31, 2006 8:56 am

It should be of no surprise that this is such a touchy subject that brings out the "passion" in each of us. Debating something such as acceptance is not concrete; it is completely subjective.


Acceptance
1. Saying yes
A written or verbal indication that somebody agrees to an invitation
2. Taking of a gift
The willing receipt of a gift or payment
3. Willingness to believe
Willingness to believe that something is true
4. Coming to terms with something
The realization of a fact or truth resulting in somebody’s coming to terms with it
5. Toleration
The tolerating of something without protesting
6. Social tolerance
Willingness to treat somebody as a member of a group or social circle
7. Positive response to application
An offer to allow somebody to join an organization or attend and institution

Mary
Posts: 472
Joined: Fri Feb 25, 2005 8:28 am

Postby Mary » Wed May 31, 2006 12:45 pm

give a mouse a cookie wrote:mom_of_an_autie, oh honey. you wrote:

I doubt that forum will be without debate...


It will be, considering I can limit who joins. You wouldn't want to even visit, let alone debate. This forum should be renamed "Biomedweb."


Cookie, if you want to create a group where you can limit membership to those people who agree with you, that's your right and you probably would be happier there. As far as I can tell, everyone is free to join here, regardless of their point of view.

There are many threads that have nothing to do with Biomed, and there is a forum here dedicated to NON-biomed.

However, it sounds to me like you want to post about biomed, namely your skepticism of it. I'm gathering that from your post in the Support forum attacking Missy. You said there you were a biomed naysayer and skeptic. I was sorry to see that post by you (because of the harsh tone, not the fact you're a naysayer); it was not up to your usual caliber of posting.

I'm glad this forum doesn't limit membership to certain points of view. I certainly couldn't begin to tell you where I would fall. I support ABA, so does that put me in the "ABA crowd" you mentioned? Maybe. I also did Floor Time, and ST. I do some biomed but won't touch some things. So I don't know where I would fall in your divisions.

I personally like to see different points of view, but I am not invested in trying to change anyone's mind. There have been some posts that have caused me to stop and think, but they weren't from the sharp debaters or witty writers. I'm most affected by the quiet, polite sort of posts that tend to get lost in all the back-and-forth.

Mary
Posts: 472
Joined: Fri Feb 25, 2005 8:28 am

Postby Mary » Wed May 31, 2006 1:13 pm

BTDT wrote:
He'd be sitting on the floor banging his head for who knows how long. Running (on tip toes)around flapping his hands screeching at the top of his voice.
Constantly making this humming sound covering his ears. Lining up everything he gets his hands on.
Putting his hands/fingers in front of his face watching them go back and forth.
Oh yeah, and he'd be on Risperdal, a very dangerous, untested drug (for kids)


I just feel like I need to tell you that this is very offensive to parents who do have children who act this way. Are these children any less valuable?


This is a sincere question: What about her description is offensive? I have a child who sometimes acts this way. Do you mean it's offensive to talk about it?

Or are you saying it is offensive that she changed this behavior? Don't school systems all try to change that behavior? In our public schools, children are not allowed to bang their heads or screech during class for safety reasons and so others can learn. Even NT kids are not allowed to do whatever they want in school. They have to stay in their seats, be quiet, not fidget, not hit, not call out, and so on.

I try to change my children's behavior all the time (especially the NT one). I don't think that means I think they're less valuable!

dgdavis64
Posts: 5241
Joined: Sun Mar 20, 2005 11:51 pm

Postby dgdavis64 » Wed May 31, 2006 2:41 pm

Mary wrote:
BTDT wrote:
He'd be sitting on the floor banging his head for who knows how long. Running (on tip toes)around flapping his hands screeching at the top of his voice.
Constantly making this humming sound covering his ears. Lining up everything he gets his hands on.
Putting his hands/fingers in front of his face watching them go back and forth.
Oh yeah, and he'd be on Risperdal, a very dangerous, untested drug (for kids)


I just feel like I need to tell you that this is very offensive to parents who do have children who act this way. Are these children any less valuable?


This is a sincere question: What about her description is offensive? I have a child who sometimes acts this way. Do you mean it's offensive to talk about it?

Or are you saying it is offensive that she changed this behavior? Don't school systems all try to change that behavior? In our public schools, children are not allowed to bang their heads or screech during class for safety reasons and so others can learn. Even NT kids are not allowed to do whatever they want in school. They have to stay in their seats, be quiet, not fidget, not hit, not call out, and so on.

I try to change my children's behavior all the time (especially the NT one). I don't think that means I think they're less valuable!



Thank you Mary, the voice of reason. This discussion had nothing to do with a persons (disabled or not) value.
We were discussing acceptance and it's vast degrees.


Beware of the pharma trollbot shills posting from anonymous proxy servers

BTDT
Posts: 3492
Joined: Tue Dec 20, 2005 8:02 pm

Postby BTDT » Wed May 31, 2006 8:30 pm

Let me add in the line right before the description I quoted.

Guess what MY SON would be doing right now if I had ACCEPTED what the drug pusher (Dr) told me at the time of his DX?

He'd be sitting on the floor banging his head for who knows how long. Running (on tip toes)around flapping his hands screeching at the top of his voice.
Constantly making this humming sound covering his ears. Lining up everything he gets his hands on.
Putting his hands/fingers in front of his face watching them go back and forth.
Oh yeah, and he'd be on Risperdal, a very dangerous, untested drug (for kids)


I don't find it offensive that she changed his behavior, only that she describes the change in a manner that makes it sound like that behavior, which many of our children currently exhibit, is so heinous that obviously it had to be eliminated. I'm not saying that these behaviors shouldn't be described, or that they can't be problematic. But describing these behaviors as so awful (the self-injurious behavior excepted), then the child is also seen as awful. How do you seperate behavior from the individual?

This discussion had nothing to do with a persons (disabled or not) value.


I strongly disagree, I think acceptance is believing an individual is still worthy despite the disability. If a child's disability is autism, which includes the types of behaviors you describe, then denigrating the child's behavior that is due to his disability, is also denigrating the child.

Say, your child had polio, and wore leg braces. Also suppose that in some manner the child recovered and no longer had to wear the braces, but could now walk unsupported. Would you post on a polio message board, where you knew many other parents posted who still had children wearing leg braces:

"Guess what MY SON would be doing right now if I had ACCEPTED what the doctor told me, and didn't do XYZ therapy?"

"He'd be wearing those leg braces, clomping along, going so slowly. Oh yeah, and he'd be taking that awful polio medicine."

How do you think that would make parents who still had children in leg braces feel? Do you think they might feel offended to hear their precious children described in that manner? Do you think a child in leg braces is any less worthy, or any less wonderful, than a child not in leg braces?

I'm not saying that it is better to leave a child in leg braces than help him to walk unsupported. Or that it is better to have a child with self-injurious behaviors or stims that impede learning and development.

I am just asking for everyone to be sympathetic to the feelings of others who have children that currently exhibit these behaviors.

Mary
Posts: 472
Joined: Fri Feb 25, 2005 8:28 am

Postby Mary » Wed May 31, 2006 10:01 pm

Hey BTDT, Thanks for you explanation. I didn't read her post in the same way you did. I read that first line as her frustration at the doctor who diagnosed him, not at her son for having those behaviors.

Your post got me thinking. As the parent of a child who does exhibit those types of behaviors, I didn't find her description to be denigrating at all. I sometimes describe my son's behaviors in a very matter of fact way, that I hope people don't misconstrue as denigrating. If you search some of my old posts, you may find a description of my son tantrumming, messing up a room, and then screaming at me because things are out of place. This is life in our house. We take it as we take it. Sometimes, my husband and I try to see the humor in some of the situations we find ourselves in as a family. It's a good coping mechanism, and it reminds us that behavior is just behavior. We try to deal with it with a sense of humor and the realization that it's just something he does, not who he is. We teach the kids that even adults have "behaviors." There is enough road rage around here that they have seen one or two adult tantrums before (not by us!)

(We do take self-injurious behaviors very very seriously and do intervene immediately and decisively to prevent injury.)

I'm wondering, does your son have these intense behaviors, too? How do you describe them or handle them?

merry
Posts: 346
Joined: Sat Dec 31, 2005 1:55 am

Postby merry » Wed May 31, 2006 11:01 pm

Our son does exibit some of those behaviors-flapping, waving his hands in front of his face, covering his ears, making repetitive moaning sounds...and usually I try to figure out why he is doing it. Even though he speaks very well and is considered "HF" (whatever that means, how do you draw the line) he usually can't tell me why he is doing something. Example-Tonight we were watching tv and standing dominos up on the table. He couldn't make the pattern he wanted to without knocking them down before he wanted to. I offered him more help but he refused and then "lost it" and started throwing them at the tv. After the first couple of fistfuls he had a smile and then it became a game of throw them hard at the tv, retrieve them, and then repeat over and over. :idea: I think it became a stim because he liked the sound of the dominos striking the glass. So what started out as negative became a positive for him. I finally was able to get him to stop. What do you all think? Do your kids display this kind of behavior?
Merry mom to A-14 yo boy with autism and type 1 diabetes

r's mom
Posts: 477
Joined: Mon Jan 09, 2006 12:39 am

Postby r's mom » Wed May 31, 2006 11:08 pm

Mary

Just like to say that I really liked your post.

Cookie, if you want to create a group where you can limit membership to those people who agree with you, that's your right and you probably would be happier there. As far as I can tell, everyone is free to join here, regardless of their point of view.

There are many threads that have nothing to do with Biomed, and there is a forum here dedicated to NON-biomed.

However, it sounds to me like you want to post about biomed, namely your skepticism of it. I'm gathering that from your post in the Support forum attacking Missy. You said there you were a biomed naysayer and skeptic. I was sorry to see that post by you (because of the harsh tone, not the fact you're a naysayer); it was not up to your usual caliber of posting.

I'm glad this forum doesn't limit membership to certain points of view. I certainly couldn't begin to tell you where I would fall. I support ABA, so does that put me in the "ABA crowd" you mentioned? Maybe. I also did Floor Time, and ST. I do some biomed but won't touch some things. So I don't know where I would fall in your divisions.

I personally like to see different points of view (yours included), but I am not invested in trying to change anyone's mind. There have been some posts that have caused me to stop and think, but they weren't from the sharp debaters or witty writers. I'm most affected by the quiet, polite sort of posts that tend to get lost in all the back-and-forth.

If you decide to come back, I will personally welcome you, but if this is not the place for you, then I wish you success wherever you go.


My view is that it is a public forum and the people who have congregated here are a diverse group and the thing we all have in common is child/ren on "the spectrum".

We all have different points of view. The perception from some people that it is a biomed site is that because some articles are posted about links to mercury, diets etc? What about the articles and talk that gets posted about ABA or genetics etc do they not count? Just because a couple of very vocal people argue for biomed doesn't make the whole site JUST biomed. Just like the ones who argue against biomed doesn't make it a nonbiomed site. But it is each persons right to try the treatments that are appropriate for their child/ren and I would think that the site is doing its job if the people who do come here are getting the support that they need. Everyone has a right to their point of view and we don't all need to be told what to think, we can and do make up our minds about what is appropriate for US.

For me I think acceptance means knowing what I can and can't change. It doesn't mean I can't try to improve my sons communication, behaviour etc skills it means that I will never put him at risk and I will accept what can't be changed, but I will do what I can to correct what I know to be symptoms of imbalance in his brain/body.

At the moment it seems that when an article is posted by someone thinking it might be interesting for others to read, it is viewed as a challenge for someone to knock that idea or theory. And maybe that is a good thing - challenge does get the brain working so that you can challenge yourself - I know it does for me, then I tend to surf the net and get more ideas on that subject.

Just some musings after reading this thread.

BTDT
Posts: 3492
Joined: Tue Dec 20, 2005 8:02 pm

Postby BTDT » Wed May 31, 2006 11:12 pm

It was not the description of the behaviors that bothered me, but the way the description was presented. To me the behaviors were being described as some sort of horrible disease.

My son does have some behaviors that are different. Some are difficult to deal with, such as aggression and tantrums, and some are just different, like his vocalizations and stims. And as you said, most of these behaviors are just a part of life for us. The aggression and tantrums are generally a result of my son's extremely limited communication skills, at least that is what we believe is the cause. And we certainly are trying to decrease the tantrumming and aggression, and it has improved, but still causes problems at times. We try to prevent the problem behaviors as much as possible by being aware of triggers. When tantrums are a problem we give him room to tantrum and make sure nobody gets hurt, and make sure we don't reward the tantrum while still acknowledging the communication behind the tantrum. I'd say that right now, aggression is a problem maybe once a week if that, and tantrums about once a week as well. Of course a lot of that depends on what we having going on, if we are going somewhere strange where he doesn't know what to expect, then we might see an increase in difficult behavior.

I don't have a problem with his stimming for the most part. My son has very limited interests, and despite the best efforts of many, he has no interest in most toys, videos, etc. He does love gross motor activities, like swinging, jumping, climbing, and water play, so we encourage these activities as much as possible.

I certainly would not hesitate to describe my son's behaviors, they are not shameful. His behavior is who he is, and isn't that true for all of us? For the person with road rage, do you seperate the road rage from the person and dismiss it? Do you think, "He's really a sweet man, he just has a problem with cursing when he drives." Or do you think, "He's a jerk!", or "He's a real uptight person!"

What makes us who we are anyway? Isn't it how we act towards others and behave in the world around us?
Last edited by BTDT on Thu Jun 01, 2006 8:43 am, edited 1 time in total.


Return to “Autism Articles, Studies & Politics”