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vickygleitz
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04 Jan 2015, 10:13 pm

This just means to me that we might have less than a decade to teach the world of our awesomeness as a people. And if there was a little more support for the parents of Autistics [ we can start with that here] that could be a good thing too. As a matter of fact, working with NT family members could in itself make a huge difference.



androbot01
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04 Jan 2015, 10:45 pm

vickygleitz wrote:
This just means to me that we might have less than a decade to teach the world of our awesomeness as a people. And if there was a little more support for the parents of Autistics [ we can start with that here] that could be a good thing too. As a matter of fact, working with NT family members could in itself make a huge difference.


In light of what's been said I went back and reread the post. I tried to look at it with a parent's eyes and I could in some parts. But it still reads like Autism Speaks propaganda. Very well written propaganda at that. But the message is clear - her life has been made one of burden. And she has every right to write about it. But it's high profile publication and lack of sympathy for the child make it disturbing to me.



wozeree
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04 Jan 2015, 10:49 pm

vickygleitz wrote:
This just means to me that we might have less than a decade to teach the world of our awesomeness as a people. And if there was a little more support for the parents of Autistics [ we can start with that here] that could be a good thing too. As a matter of fact, working with NT family members could in itself make a huge difference.


I agree with that, but it seems like the best help possible would be a way to help them not think of their kids as "the Other." IS that possible? That would change the world!



OliveOilMom
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04 Jan 2015, 11:56 pm

androbot01 wrote:
Okay, bluntly, my concern is that people will be more inclined to abort babies with autism (the technology to identify the gene will be available within the next decade, I'm sure.)
They will read blogposts like this and they will remember. And when a woman a few years down the road finds out she is pregnant with an autistic baby, she wont want to have it.
I don't deny that any parents job is hard. My concern with this post is the objectification of her son, as if he is not a person, but rather the thing keeping her from having the life she wants.


While I don't know what I would choose in that situation, or would have chosen when I was younger, I do support each lady's right to decide whether or not to follow through with a pregnancy for whatever reason. I may not think its a good enough reason for the mother to abort, but I wont be the one raising the baby either. I seriously doubt there will be a sudden increase in adoptive homes for autistic kids, unless there are some major advancements in treatment, so every gal has to make her own decision about abortion in general and in what situations if any does she feel that it's acceptable. She has to live with her decisions, I'm well past making decisions like that anymore. I've had my kids and raised them. I don't really have a dog in the abortion fight anymore except philosophically. I believe women should have a choice, even if they choose not to take it.

If they were able to isolate the autism gene, it will then become a personal decision between the mom and her doctor and if she so chooses (and I think she should include him) the dad. You may be afraid that in the future women will choose to abort because of autism, and specifically these blogs, but autism already has such a bad reputation, and had a really terrible one even before Autism Speaks came around, that it's pretty much a given that most women except the hardline pro-life ladies would have an abortion.

Reading that woman's feelings about her life doesn't change the reality of what she has to do every day. She could describe it as a death march or with happy birds on her shoulder and chipmunks and unicorns frolicking about while she cuddles her son and draws rainbows, but the reality of what has to be done on a day to day basis will be exactly the same. I know on some days when mine were young it was all I could do to get through it, and on others it was work but I sailed through it on a breeze it seemed. Both days held the same chores, same kids, same life. Im sure there are lots of blogs by moms of big families where the imminent nervous breakdown is described and the sheer exhaustion and constant noise and chaos and no time for anything personal other than a quick bowel movement with the door open and the baby on the little potty next to her and then to fall into bed feeling beat to death, and I'm not worried that women are going to read them and limit their family size, therefore missing out on all that love and depriving the kids of siblings. I'd hate to see someone make that important a decision based on something as silly as a blog post by a stranger which may or may not be completely fabricated, but if that is her choice then so be it.

I'm against censorship in pretty much any form. I dont think that we need to stop women from publicly complaining about their life with a special needs child because someone might read it years later and decide to make a perfectly legal decision based on it. Your argument is very close to wanting censorship to control ideas. Also, if the day comes where they can isolate the gene and a woman is facing that decision, if she gets online to find information to help her make her decision, do you really think that out of everything out there, this one post is going to be the only thing she reads? Do you feel that it's so powerfully written as to be irresistible? Is this lady's life so horrible to read about in your opinion that you think the future pregnant lady is going to read it, suddenly sign offline cringing in terror and decide that this one mom's opinion has convinced her beyond a doubt that her life will be forfeit that she decides it would be futile to do some research on medical and professional sites as well as just reading anecdotal evidence by emotionally and physically exhausted lay people who can only provide a subjective account of how autism effected one child, years ago and then make an appointment for the abortion.

If a lady is stupid enough to base a decision that size on a blog post, then I honestly have my reservations about whether it's advisable for her to reproduce at all, let alone have the responsibility of raising a child and making decisions for him. Think about how she will go about choosing the less important things for a kid if she trusts blogs to tell her how to choose between life and death for her own offspring.

Are you worried about our population makeup losing most of it's autistic members for real? Is that honestly your reason for this? I'll believe you if you say it is, but I'm wondering if you may have a deeper issue with it, the same one that some other people have had, and they take it personally. If it's worry over the existence of future autistics, I have to tell you that even if there were no blogs or public information about first hand accounts of moms of autistics, the assumption about what life would be like would probably be as bad as or worse than these bloggers for a good number of women and they would choose to avoid it.

Have you thought about the possibility that a mother might be willing to sacrifice the rest of her own life to take care of her baby, but lets say she comes here and reads the Haven and L&D and is livid when she reads how some AS folks wish they had never been born, and others hate their lives and are lonely or bullied or isolated and unable to do enjoy life at all and she decides that to spare the child a life of pain she would go ahead and abort? We have more posts here on this forum to be used as evidence that most autistics have desperately unhappy lives than you can find anywhere else on the internet you know. If she has the baby and cant do the job she can always give him up for adoption, but he will still have the same sad life she's read about, in the own words of autistic adults, so she does it to spare the kid pain. Sparing a baby pain when he's got an incurable disease is sometimes seen as compassionate grounds for an abortion. Of course having an abortion to keep a baby from living five years in agony while dying a very slow and excrutiating death really isn't the same thing as aborting him to keep him from growing up to be some of the more prolific and dramatic complainers on here, but in her mind it may be.

I'd honestly worry more about her aborting to spare the kid, because a parent can go through anything for her child, but causing your child to hurt isnt something anyone wants to do. Our own forum is more dangerous to your idea of the future than that woman's blog. A lot more.


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My forum is still there and everyone is welcome to come join as well. There is a private women only subforum there if anyone is interested. Also, there is no CAPTCHA. ;-)

The link to the forum is http://www.rightplanet.proboards.com


androbot01
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05 Jan 2015, 12:22 am

Hmm ... maybe I shouldn't concern myself with the possibility of a world without autistic people. I kinda hoped that we could influence the world for the better, like Temple Grandin. Maybe we can. But the clock is ticking.
I think that the impression autistic people leave society with in next few decades will determine if autistics are to be a part of the coming generations.
And yes I think we have something to offer civilization. The nts are making a mess of it. They could use some help.
And ftr, I'm pro abortion and anti-censorship. My concern with the article is that it is demonstrative of pervasive feeling against autistic people. And abortion, it's up to the mother.



cubedemon6073
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05 Jan 2015, 12:26 am

Quote:
Since you seem to think society should change for you, what specific changes would you propose? Also, what are you willing to change about yourself to fit into society?


What should society change for me?

1. Quit telling people to be themselves when we know this is an utter lie.

2. Use critical thinking more and less positive thinking and positive affirmations

3. Tell me what I should change about myself, give me the means and opportunity to do so.

4. If I screw up on x please be patient with me

5. If I must be on SSDI and if someone asks what I do for a living please don't call me a welfare bum, leech, etc if I state the truth. Please do # 2.

6. Provide me access to all of the laws of our society, show me how to interpret laws correctly or if that is not possible then accept ignorance as a valid defense on any and all obscure laws I didn't grasp. Murder, rape, robbery, stealing to me is obvious so that's not what I'm talking about.

7. Don't expect perfection.

What will I change about myself to fit in?

1. I will try to make better eye contact if I'm shown how.

2. Same with shaking hands properly

3. I will develop my manners to be even better if I'm shown how.

4. I will be less negative.

5. I will not talk about my special interests if that is not the topic of conversation.

6. I will make every effort to quit talking to myself if I have help to do that.

7. I will use the words sir and mam more.

You didn't ask but I will answer this question. What will I not change about myself to fit in?

1. I will not sag my pants. It's disrespectful, degrading and disgusting.

2. With certain exceptions I refuse to use political correctness. Example: I will never quit using the words ret*d, gay or lame to describe something silly. To focus on words which have syllables, sound utterances and symbols to represent these things instead of the attitudes, context and ideas behind the words is ludacris, silly, gay, lame and ret*d.

3. I will never smoke again. Nasty Habit.

4. No illicit drugs.

5. No drinking.

6. I will not change how I carry my jacket.

7. I will never be positive towards things like pedophilia.



cubedemon6073
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05 Jan 2015, 12:58 am

What should society should change for me? More Things if I don't want to fit in or be a part of society

1. If one chooses to be institutionalized can one have a right this

2. The right to euthanasia if I desire this and the right to see someone like Dr. Jack Kevorkian and use Dr K's suicide machine. If I choose this, I want my brain preserved and studied. I want all my other organs donated. I want the rest of my body to be grounded up and fed to the masses in fast food and upscale restaurants. They would make a killing.

3. Let me claim SSDI, welfare, and let me live in peace.



Last edited by cubedemon6073 on 05 Jan 2015, 1:13 am, edited 3 times in total.

androbot01
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05 Jan 2015, 1:02 am

I'm curious as to #6...I will not change how I carry my jacket.

People have hassled you about how you carry your jacket? How petty.



cubedemon6073
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05 Jan 2015, 1:06 am

androbot01 wrote:
I'm curious as to #6...I will not change how I carry my jacket.

People have hassled you about how you carry your jacket? How petty.


Ya, it's pretty stupid.

Speaking of the latest #2, I'm hungry maybe I'll make a late night trip to McDonalds. :P



Moromillas
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05 Jan 2015, 2:53 am

OliveOilMom wrote:
OK, I'm going to try yet again to answer a long post. If this new forum eats it, I'm going to pop a blood vessel. Even though our opinions are opposite, wish me luck at last getting it through before the wormhole to WP closes ;-)

Except I don't trade in opinions, what I say, is all on fact, derived from collective experience, or statistics.



OliveOilMom wrote:
Do you doubt that their lives are really that hard, or do you think that the information shouldn't be shared about it, or is it the issue of not wanting the parent to get any sympathy or attention for anything to do with AS, because denying the parent some emotional support in some way or other makes sure that people only pity the person with the disorder and not anyone else effected by it?

If someone has a special needs child and they aren't able to care for them, there are agencies they can sign them away to. That's a horrible choice and probably dooms the child...

What this is, is a fallacy called ad misericordiam. It basically uses emotion and in particular pity, in place of reason.

Hard times, simply do not change the facts, and I could just as easily say it's harder for the AS person. It is not the result of AS (or the child), it is the result of an inadequate infrastructure.

If the tables were turned, and for centuries it were AS people that filled the majority, it wouldn't be seen as a disorder, but being neurotypical would. It would be described as being ungrounded and fickle while being unable to focus, and having problems with honesty, and repetitive speech among other things. And would probably have similar "developmental issues" in a world that caters exclusively to AS people.



OliveOilMom wrote:
Whether or not a stranger on the internet has the impression that AS children are a burden on society now and in the future wouldn't cause someone to not hire an employee with AS because they assume the guy is a burden. The fact that they are seeking a job and have or are willing and able to learn skills is a sign that this person isn't a burden on society. Some employers just won't be willing to provide accommodations for an AS employee, depending on what they are, and others may not be logistically able to.

It happens and its nobody's fault. Some will grow up to be, to use your words, a burden on society. It's how their brains are wired, they can't change it, can't get around it or reprogram or ignore it.


This is just not the case, I wish it were the case. Even if you're overqualified, the word "Autism" or "Asperger's" alone comes will all sorts of stigmas.

Quite simply, employers are too scared to hire AS people, and have all sorts funny ideas about AS people. They think you either can't do the job or that something will go wrong, when in reality, AS people can do the job, and in most cases do it better than an NT.

How scared are they? They are an 80% unemployment rate for AS people scared.

I have no idea what you mean by "provide accommodations for an AS employee", what accommodations are made for NTs, and why they would be different is beyond my ken.



OliveOilMom wrote:
Now, let me ask you this. The word burden is insulting, and it means the same as several other words. Do you deny that some AS kids grow up to not be able to work or contribute or do much for themselves and need others their entire life and this is technically a drain on society or social security or whatever source is providing caretakers and essentials?

Yes I deny this. AS people are more than capable of working and contributing. The problem being that people are not comfortable with AS people working and contributing - A direct result of the vile stigmas, much like the ones perpetuated in the article, and in the comments below.

Autism bux and no jobs is hated hated hated, yet what else do you do to survive? And how is that the fault of the AS community?



OliveOilMom wrote:
...KingdomOfRats...

That's different, that's intellectual disability. You're comparing apples to oranges, and then to pears.

My experiences aren't straight from the internet. My experiences come from my real life, and from lots of other AS people that I meet, in real life, primarily as a social club. Our crew, not including our one specialist, we would probably have combined, over 150 years of real life experience with AS, and I don't mean childhood AS, but adult AS. So it's not a case of, straight from the internet.

There are many people that have intellectual disability, but are NTs. It's simply a misrepresentation to say that being an NT is the same as intellectual disability. It's also a misrepresentation to take all the stuff that little kids go through, and apply them to adults, that no longer have said problems.



OliveOilMom wrote:
How exactly do you think these blogs and this lady might impact your life and future, or the future of others. I'm really having a tough time understanding what you are worried about happening because of it. Are you simply concerned about what people think in their own minds, or are you concerned about what actions their thoughts would lead to?

The focus has thoroughly shifted from AS people, to parents. To the point where talk about AS "cure" is considered normal. It throws one hell of a spanner in the works for progression, instead of talking about the issues, you're having to dispel stigmas and other nonsense, slowly and painfully.



OliveOilMom wrote:
In response to what you said about NT's not listening to your explanations about how you aren't all that different, that is another acquired skill. You have to learn to speak with a strong and steady voice and stand straight and hold your head up and look like you know what you are talking about.

I probably didn't make my metaphor very clear,

When I said they don't listen to us, I'm referring to the AS community in its entirety, not just me, talking to someone verbally. Prime example being John Elder Robison, repeated telling Speaks that the direction they were going in, is not a good one, and that falling on deaf ears.



OliveOilMom wrote:
But giving up all of your power to some mom with a blog, because you don't think you can do anything is pretty much the definition of self defeating. Have you tried? If so, what have you done to change people's minds?

You misunderstand, it's not defeatist, it's more work. And frustrating as hell when NTs have such a large boost.



OliveOilMom wrote:
I've never had middle eastern food really.

Look for something called "Tagine". If you can find an authentic version, you won't be disappointed.



OliveOilMom wrote:
This is the second time you have mentioned pasta to me. Are you Italian? I'm half Sicilian. My Dads family was from there. Mother was a ScottsIrish/Cherokee mix with a little Roma thrown in via her mother's people from South Carolina.

That would be telling. But I do know for certain, that having spaghetti with ragu, and calling it "the Bologna style" is an abomination against nature.



OliveOilMom wrote:
Then I'd suggest you make a plan to learn to present yourself as the antithesis to those misconceptions. Represent yourself out there in the world as "Not that guy". Do you want to lay down and let them define you? You don't have to chase them all over and counter everything they say publicly with your argument. You only have to decide who you want to be, learn to be and come across as that guy,

Way ahead of you.



OliveOilMom wrote:
Since you seem to think society should change for you, what specific changes would you propose? Also, what are you willing to change about yourself to fit into society?

No, not change for me, have the same level of support for everyone. At the moment, NTs, are up here - While AS people, are down here. Equality, parity, not change.

If I could only change one thing, it would be the creation of AS schools that are publicly funded similar to NT schools, yet have a curriculum that greatly benefits AS people, rather than having a reliance on private tutors that you have to pay through the nose to get.

There's only so much you can change about yourself, before you start going against your nature. Like breathing, and having a system where you're not supposed to breath, or only have tiny breaths. The part that's missing, is the acceptance, that's the only thing left that's needed.

Also, your posts are TOO LONG, and have too many topics.



cubedemon6073
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05 Jan 2015, 10:10 am

Moromillas wrote:
There's only so much you can change about yourself, before you start going against your nature.


...and at the same everyone is told to be themselves. Which is it? Are we supposed to conform to a set of cultural norms or are we not?

Heads we lose; Tails we lose!

So, we have two contradictory requirements we're supposed to conform ourselves to.

http://www.orange-papers.org/orange-cult_q0.html

If you read the Orange Papers, you may find some parallels of a cult to society.



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05 Jan 2015, 10:32 am

I know the mom's upset. I wish she'd acknowledged her kid as more than a burden and a blockage, but that's not my main issue.
For me, the main thing is the scope. Actual autistic people have little voice, largely because Autism Speaks took over and speaks only for caretakers. Organizations by and for autistic people, like ASAN, get minimal attention in the media. One mom talking of her child as a burden got a major HuffPost piece. We need a voice.
And why are the experiences of NT caretakers so often considered the most important ones in the conversation on autism? Why are the experiences of actual autistic people so often ignored or deemed invalid or unimportant, in favor of their caretakers'? Why do people ignore autistic peoples' personhood and voices, and reduce us to burdens and roadblocks in the lives of NT caretakers? Why do people ignore people who have lived autism in favor of people who have watched it lived, and treat the watchers as the main authorities on living it?
(Side note: It really annoys me when people talk about "living autism" or "having lived through autism" when they're NT caretakers. No. You may have cared for an autistic kid, and it may have been a terrible struggle, but it doesn't make you autistic, and it doesn't tell you how it feels to be us.)
I don't mind that people write this sort of thing. I mind when it's all most people hear.



androbot01
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05 Jan 2015, 10:41 am

Greenhat wrote:
Why do people ignore people who have lived autism in favor of people who have watched it lived, and treat the watchers as the main authorities on living it?

Good question.



vickygleitz
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05 Jan 2015, 11:17 am

This is how I will/already am change. I REFUSE to act NT anymore.That drains my energy, my intellect, and is in direct denial to my authentic self.I will[and do]proudly proclaim my autism and I am extremely vocal about it.

I am NOT willing to give in, to compromise even more.We have already compromised way too much. What more compromises should we make? Apologize more profusely for getting our faces in the way of their fists? I promise you, that is NOT the way to foster respect and understanding.



cubedemon6073
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05 Jan 2015, 12:57 pm

vickygleitz wrote:
This is how I will/already am change. I REFUSE to act NT anymore.That drains my energy, my intellect, and is in direct denial to my authentic self.I will[and do]proudly proclaim my autism and I am extremely vocal about it.

I am NOT willing to give in, to compromise even more.We have already compromised way too much. What more compromises should we make? Apologize more profusely for getting our faces in the way of their fists? I promise you, that is NOT the way to foster respect and understanding.


Exactly, when is enough, enough?



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05 Jan 2015, 1:51 pm

Greenhat wrote:
Why do people ignore people who have lived autism in favor of people who have watched it lived, and treat the watchers as the main authorities on living it?

In my experience, they either believe things like the DSM. Or they're too heavily entrenched in the vile stigmas.

It becomes very easy to write AS people off as, "Oh, they're not able to understand what's going on." as ironic as that sounds, or "Oh, they've deluded themselves into thinking something unusual."

Because of publications like the DSM, they've something that they can turn to for a quick bias confirmation, without having to think about its credibility or whether it's derived from evidence or just conjecture, ad verecundiam. Therefore, by means of stupidity, they can easily dismiss us.

For example; this was linked to me recently:
http://www.diseasesdatabase.com/ddb1142.htm
Along with "Oh, you're just deluded, you don't know what you're talking about. It is a disease, it says so right there."