Combating Autism Bill Squashed by Rep. Joe Barton of Texas

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Again your assuming we dont understand your position. Some of us are higher functioning than others and many of us have family and friends who are low functioning.

We can communicate effectively because we are not as severe but that doesnt mean we dont understand how they feel and think.

You've spent all this time money and effort trying to force your child to be something hes not.

Its like trying to force a fish to breath air.

Your torturing the poor kid.. if he understands well enough to want to be more functional then it is something he will work for on his own.. help him yes but dont push it on him.

Hes might be lost in his own world.. but have you ever stopped to think it might be a better world than the one your trying to cram down his throat?

Calling it helping him may be more comforting to you but just be sure your not projecting your desires onto him.. is what your doing really what he wants or is it what you want?

Last edited by Fraya on 05 Oct 2006, 1:00 pm, edited 1 time in total.

http://www.gettingthetruthout.org/
you gotta read through the whole site. not just the first few pages. IT is real and was written by someone with autism, not aspergers or high functioning, just autism. You obviously care about your son... i am not accusing you of not. just read it

Do you understand that I have given up everything for this boy that the schools would like to label "ret*d"? I was praying that the Combating Autism Bill would give me some financial relief, because I cannot keep this up. I don't want to fail Jack. Who knows what he wants? Right now, he walks around stimming and purposely pushing around his younger brother with CP. I am just trying to help our entire family -- I accept Jack, but I'd love for him to even be able to type what he feels or something --- I've been fighting for Jack since the diagnosis and I simply want and need more assistance from our government. The truth is, Jack may understand more than I think, but right now - I don't know. I just wish there was more help for parents who are trying to help their child - Jack can read at a 2nd grade level (he's 6) but he can't "talk" to me and tell me if someone hurt him or what hurts on him.... I'll read your link. thanks

Now we're getting somewhere.. if you want the truth and real advice from people who know your in the right place.

But talking of a cure or making him normal is simply aggrivating to us and the wrong approach.

Your son will never be normal and its unlikely he would want any "cure" you offer.. its like if someone were to offer to fix you by giving you schizophrenia.

If he wants to learn we can help you teach him but if he doesnt you cant force it and either way you will have to accept that he has limitations.

There are some things he will never understand things even those of us who can speak and write intelligently and seem almost normal will never completely understand.

Hes a cat in a world full of dogs.

Sure, move to another site whenever you don't like the answers you get. I could read from 3. But the thing is, the real world doesn't like ealy readers. (I mean, the children.) So yes, I hid it. Only a very few people know that I type stories up. And they only know because they either caught me in the middle of one or they caught me thinking about it. Another thing I hide.

Did you ever pause to think that maybe, JUST maybe, he can come into your world if he wants but just thinks its safer in his own?


I'm not saying he can, just that it's possible.

If you met me while I was 'zoned out', I may well come across as permeantly in my own world.

My friends have parents who are pro-cure, but they love all there kids equally. They just upset their kid dosnt speak(other than repeats). i think most(not all ) parents are like that... I am glad you are looking at the site though, even if you don't like it maybe it will help you understand your son.

If the child is happy what does it matter what they can and cant do?

If the child doesnt want to speak who says they have to?

All too often the real problem is the parent who cannot let go of the fact that they didnt get the child they wanted so wont let go of trying to change the child into that person whether they like it or not.

Besides verbal isnt the only form of communication.

Autistic children are constantly talking the trick is learning how to listen.

But, you guys are able to communicate with me - via the internet -- Jack cannot, and the public school he goes to insists he "conform" - so, therefore, it leaves me no choice but to help him "fit in" or what do I do for him? Is he really happy? Who knows? He's 6, so he's still "cute" but what happens as he gets older and becomes more combative? I did review that website, and it was hard to read. You all have to understand that I am a parent - and being a parent is different than your perspective. ok? if I want to push for more government funding for my son, why give me a hard time? If you were a parent -- wouldn't you do whatever you could for your child? Can you answer that? Probably not - as I can't understand what it's like to be you. But I try. Were your parents helpful to you in this journey?

But, you guys are able to communicate with me - via the internet -- Jack cannot, and the public school he goes to insists he "conform" - so, therefore, it leaves me no choice but to help him "fit in" or what do I do for him? Is he really happy? Who knows? He's 6, so he's still "cute" but what happens as he gets older and becomes more combative? I did review that website, and it was hard to read. You all have to understand that I am a parent - and being a parent is different than your perspective. ok? if I want to push for more government funding for my son, why give me a hard time? If you were a parent -- wouldn't you do whatever you could for your child? Can you answer that? Probably not - as I can't understand what it's like to be you. But I try. Were your parents helpful to you in this journey?

i said speak? ... when i said speak i mean comunication in general. I'm sorry about the msunderstadingt

For gods sakes get him out of public school as soon as possible.. public school to us closely resembles nazi death camps.



It can be hard to tell if hes happy or not.. generally you can judge it by his behavior.. if he doesnt overload often it can be safely assumed hes at least content. As for him being 6 thats exactly it hes only 6.. right now hes most likely still wrestling with the most basic (and to us foreign) concepts of interacting with people (these are the things most people know instinctually.. we dont have that benefit and have to work it out conciously). You have to understand he feels like a human whos been suddenly dropped into an alien civilization with no concept of how their communicating what any of it means much less what hes supposed to do. Its not something you can really teach him he has to figure it out on his own.. give him time hes learning even if it doesnt look like it.



We understand that and its a conflict we dont envy.. you want the best for your child but your brain and paternal instincts are designed for neurotypical (NT) children not us you have to second guess your instincts now because you may be doing more harm than good regardless of your intentions or feelings.



Its not the government funding we're opposed to if anything we're all for it.

The problem is the bill included funding not only for our treatment but for developing ways to systematically exterminate our culture. Its racial genocide.. would you be pleased if you were one of us?



And we appreciate the effort.



It can vary wildly.. my parents basically abandoned me and were betting on the fact I couldnt take care of myself to eliminate my existance from their lives. Unfortunately for them I survived against the odds. On the other hand there are many on these forums who have wonderfully understanding parents.

How do you know? What is the real reason? So the main problem is the school. Trust me, he's better off not going to school. If this bill was pushing for more funding for people like your son, we would support it. BUT it's not about that at all. It's about PREVENTING Autism, NOT about UNDERSTANDING the spectrum. The bill is suggesting we're some kind of pest that needs to be culled. Or it's suggesting forcefully imposing typicality on what isn't typicial.

Put it this way:
You have a society which are mostly tactile learners.
All foetuses are being screened with revoluntiary new equipment/methods and some are found to be visuial learners, the goverment proposes a new bill whose main aims, altough cleverly wrapped in honeyed words, are to:

.Ensure abortion of x% of these different foetuses
.Ensure they MAKE them absorb information in tactile ways.

The fact is, you can't kill something or change it JUST because it's different. Well, you shouldn't be able to with all the anti-discrimination laws.

I'm over at the parent's forum complaining about the treatment my son gets at school and the best advice I've gotten is "pull him out of that school".
Just because someone went to college and got a degree doesn't make them a child expert. The schools want autistics to either "fit in" or get out. That doesn't make them right. It makes them intolerant. My son has alternative communication tools. I have been fighting tooth and nail to get the schools to learn more about autism. THAT'S what a lot of monies should go towards. Public education, which is compulsory in this country, needs to learn more and be more tolerant of autistics and other learning disabled, other abled kids.
I didn't go to school and get a teaching credential, I don't get a nice salary with 3 month's vacation included. But I might have to be my son's private teacher in a few weeks anyways. I have a special ed teacher, her job is to understand kids like my son, who knows NOTHING about autism.

The regular ed teacher complains because my son writes poorly and they keep forcing to write more and more. Finally, an autism assessment team comes in and states, "teach him the keyboard instead".

I had to teach myself how to communicate with my son. He's obviously autistic too. But working with him MYSELF, because he's MY son has helped him learn how to express himself. But all the talking he can do won't get him to "fit in". I don't want him to.

Don't forget, Temple Grandin is autistic, yet she's done a lot for the beef industry by making it more humane for the cattle. If people had their way, she wouldn't have been allowed to be born, just as the majority of Downs babies are aborted. If you think that's good, you should also be aware that there are often false positive results.

What makes those that suggest getting rid of autism different from this "P.O.C" bill? Your arguements here seem to be rather uninformed but pepped with some ad hominem arguements. Stop trying to find the cause. We already know it's a different wiring of the brain. Stop trying to find why your son may not talk. Go sit in on one of his classes and actually find out.

Stop being a Ford Prefect.
Stop starting to say things and say things.
Stop trying to find things out and find things out.

I don't mind it being used to help parents in some ways... i don't like that it would be used for funding in certain programs that people that have been through those programs see as torturous and abusive. and other things but this was the main one.

I know its a different perspective... thats why i posted the link. I don't just focus on my anti-cure perspective, I try to look on both sides

i wanted parents to look on both sides too, though. including the autistic side... i don't think you can get the whole story by just focusing on one side.