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New York Times-The Kids Who Beat Autism

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WelcomeToHolland
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07 Aug 2014, 2:22 pm

I've got to say I'm really surprised by the disgust people on here apparently feel about this because I got the impression it was talking about the different attitudes towards autism and why "curing" autism is problematic. Yes, it does feature people of both "sides" but it's kinda hard to compare something without acknowledging both sides...

As for why it's not from the perspective of the autistic child...well...it's also kinda hard to write an article from the perspective of someone who doesn't communicate. It's not usually the uber-high-functioning people who are "getting cured"- it's usually the low-functioning ones. I have a teenager who does not communicate- doesn't speak, doesn't type, doesn't sign, doesn't use PECS. I could not write an article from his perspective because I have no idea what he thinks. That's precisely why parents of LF children want something other than "oh well they're great the way they are". Of course you love the child the way they are, but you wish you could know what they think, you wish you could hear their perspective because they are great...but you can't because they don't communicate!! !! Even people who have some communication for needs, don't express complex thoughts, so you still don't know their perspective. I guess I just don't understand what's repulsive about an article about the parents thoughts when we have no way of knowing the child's thoughts anyway, and it's also repulsive to say we wish the child could express themselves. They may be very happy how they are...but we don't know that...and yeah, that's hard for a parent.

Edit to add: one thing I could do is write an article speculating how my son feels. Maybe that would be less repulsive. But I personally feel that's even worse, because I wholeheartedly believe he does have complex thoughts, so for me to put thoughts into his mouth and pretending to know , is discrediting him. I know I wouldn't like someone writing an article about what I think without consulting me.


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PlainsAspie
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07 Aug 2014, 3:49 pm

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As for why it's not from the perspective of the autistic child...well...it's also kinda hard to write an article from the perspective of someone who doesn't communicate.


That's a bit of a generalization.

It's not just "high-functioning" autistic people who oppose a cure. There are many non-verbal autistics who oppose the idea. Henry Frost is one example.

One huge misconception about the neurodiversity and autism acceptance movements is that they oppose any improvements on the disabling aspects of autism. I have not read or heard a single person express that sentiment. If there are ethical treatments that improve one's ability to communicate, relieve anxiety, stop seizures, etc., I don't consider that a cure and I'm all for it.



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07 Aug 2014, 4:47 pm

PlainsAspie wrote:
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As for why it's not from the perspective of the autistic child...well...it's also kinda hard to write an article from the perspective of someone who doesn't communicate.


That's a bit of a generalization.

It's not just "high-functioning" autistic people who oppose a cure. There are many non-verbal autistics who oppose the idea. Henry Frost is one example.

One huge misconception about the neurodiversity and autism acceptance movements is that they oppose any improvements on the disabling aspects of autism. I have not read or heard a single person express that sentiment. If there are ethical treatments that improve one's ability to communicate, relieve anxiety, stop seizures, etc., I don't consider that a cure and I'm all for it.


No it's not a generalization. I didn't say all people with autism can't communicate (that would be a stupid thing to say). I'm saying there are people who do not communicate. That's a fact. My son is one of them. That's why this means something to me. I feel like NOBODY cares about these people- they'd rather just pretend they don't exist. But they do. How does Henry Frost express his opinion if he doesn't communicate? There's a difference between speaking and communicating. I would totally settle for an alternative form of communication. My son doesn't type, or use PECS, or sign...he doesn't express complex thoughts. Like I said, I believe he has complex thoughts, but I don't know how to help him learn to communicate. We still try to teach him sign language and to type, but so far all efforts have been fruitless. That's great if you think it's ok for us to try to teach him to communicate (gee, how kind of you).

My point is, the whole reason I would even want my son to be able to communicate, is so he could write a book about himself instead of me writing a book about him. That seems to be where your disgust is (at how they're being written about from an NT perspective). Well, I want that too. Most people I'm close with have a LF autistic child and we all want that. We WISH our kids could tell you themselves...but they can't.


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07 Aug 2014, 8:00 pm

WelcomeToHolland wrote:
I've got to say I'm really surprised by the disgust people on here apparently feel about this because I got the impression it was talking about the different attitudes towards autism and why "curing" autism is problematic. Yes, it does feature people of both "sides" but it's kinda hard to compare something without acknowledging both sides...

As for why it's not from the perspective of the autistic child...well...it's also kinda hard to write an article from the perspective of someone who doesn't communicate. It's not usually the uber-high-functioning people who are "getting cured"- it's usually the low-functioning ones. I have a teenager who does not communicate- doesn't speak, doesn't type, doesn't sign, doesn't use PECS. I could not write an article from his perspective because I have no idea what he thinks. That's precisely why parents of LF children want something other than "oh well they're great the way they are". Of course you love the child the way they are, but you wish you could know what they think, you wish you could hear their perspective because they are great...but you can't because they don't communicate!! !! Even people who have some communication for needs, don't express complex thoughts, so you still don't know their perspective. I guess I just don't understand what's repulsive about an article about the parents thoughts when we have no way of knowing the child's thoughts anyway, and it's also repulsive to say we wish the child could express themselves. They may be very happy how they are...but we don't know that...and yeah, that's hard for a parent.

Edit to add: one thing I could do is write an article speculating how my son feels. Maybe that would be less repulsive. But I personally feel that's even worse, because I wholeheartedly believe he does have complex thoughts, so for me to put thoughts into his mouth and pretending to know , is discrediting him. I know I wouldn't like someone writing an article about what I think without consulting me.


That sounds maddening.

Here's where you went wrong:

If AS is a defect or disease, then a cure is help.
AS people are not defective or diseased.
Therefore, AS people don't want help. Fallacy detected!

First, I'll tell you why the article in question is a disgrace, and why it's disgusting. Basically, it's racism or bigotry, it's hatred. It mirrors the same values and speech as the Nazi party on ethnic cleansing. Where a group of people are not though of as people, but instead dehumanised into a person with a horrible disease. It becomes so easy to write a paragraph on others when you can dehumanise them and instead talk about "the disease". Looking at stuff like that, when AS is in fact the person, is revolting and downright creepy. It's 2014, and I'm having to mention to people (not you) that I'm actually a person. Or worse, expected to prove it.

Now, your son. It may be just first glance, but you appear to have it backwards. It's not that they don't communicate well, it's that they don't have the tools to communicate well. You're frustrated at the wrong thing. It's not that AS people are heavily defunct or disabled, incompetent or unable, but rather that society has this massive support structure geared exclusively for NTs. Because they're the vast vast majority, by birthright, NTs have the winning formula to succeed, while AS people get a kick in the teeth. Just wait until he's an adult and no longer recognised as a "child with autism", you watch how quickly they drop support. If you think not having a way to understand him is maddening, think about how maddening it would be for him, not living up to his Dad's expectations.



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07 Aug 2014, 8:55 pm

[quote="Moromillas"]

That sounds maddening.

Here's where you went wrong:

If AS is a defect or disease, then a cure is help.
AS people are not defective or diseased.
Therefore, AS people don't want help. Fallacy detected!

First, I'll tell you why the article in question is a disgrace, and why it's disgusting. Basically, it's racism or bigotry, it's hatred. It mirrors the same values and speech as the Nazi party on ethnic cleansing. Where a group of people are not though of as people, but instead dehumanised into a person with a horrible disease. It becomes so easy to write a paragraph on others when you can dehumanise them and instead talk about "the disease". Looking at stuff like that, when AS is in fact the person, is revolting and downright creepy. It's 2014, and I'm having to mention to people (not you) that I'm actually a person. Or worse, expected to prove it.

Now, your son. It may be just first glance, but you appear to have it backwards. It's not that they don't communicate well, it's that they don't have the tools to communicate well. You're frustrated at the wrong thing. It's not that AS people are heavily defunct or disabled, incompetent or unable, but rather that society has this massive support structure geared exclusively for NTs. Because they're the vast vast majority, by birthright, NTs have the winning formula to succeed, while AS people get a kick in the teeth. Just wait until he's an adult and no longer recognised as a "child with autism", you watch how quickly they drop support. If you think not having a way to understand him is maddening, think about how maddening it would be for him, not living up to his Dad's expectations.[/quote]

I know why people oppose a cure. I didn't see that article as pro-cure. For a pro-cure article, it sure does spend a lot of time talking about why a cure is problematic... The conclusion is about the boy who wasn't "cured" and about how that's ok. That's not pro-cure; it's just not. I understand it begins talking about the boy who was "cured", but even that is challenged.

As for my son: I know it's frustrating for him. That's a huge reason why I wish he could communicate. I live for my kids. I want the best for them. Maybe on some autistic planet, he wouldn't spend his days banging his head and biting his hands, and would be able to show his true genius without NT communication... But that's not going to happen, is it? That's why this isn't black and white. I do value him as a human, of course. My value for him is exactly why I want to teach him these skills, so he can stop self injuring and tell me how he feels, etc.



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07 Aug 2014, 9:32 pm

WelcomeToHolland wrote:
I know why people oppose a cure. I didn't see that article as pro-cure. For a pro-cure article, it sure does spend a lot of time talking about why a cure is problematic... The conclusion is about the boy who wasn't "cured" and about how that's ok. That's not pro-cure; it's just not. I understand it begins talking about the boy who was "cured", but even that is challenged.

As for my son: I know it's frustrating for him. That's a huge reason why I wish he could communicate. I live for my kids. I want the best for them. Maybe on some autistic planet, he wouldn't spend his days banging his head and biting his hands, and would be able to show his true genius without NT communication... But that's not going to happen, is it? That's why this isn't black and white. I do value him as a human, of course. My value for him is exactly why I want to teach him these skills, so he can stop self injuring and tell me how he feels, etc.

Yeah, the first paragraph, I had to stop reading or barf. It sounded like the sort of thing you would tell around a campfire as a corny horror story. "My little Timmy, he was such a happy and normal boy. Then one day, I saw it, the light in his eyes, just faded away, and he was, replaced with.... autism...." Perhaps my gripe is that such a stance would be given audience at all, or that it may be considered the default stance.

Here's an interesting book I found that has some relevance, perhaps there are parts you can relate to and find helpful, though I can't and shouldn't give guarantees:
http://www.amazon.com/Ido-Autismland-Cl ... 0988324709



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08 Aug 2014, 3:38 pm

Moromillas wrote:


First, I'll tell you why the article in question is a disgrace, and why it's disgusting. Basically, it's racism or bigotry, it's hatred. It mirrors the same values and speech as the Nazi party on ethnic cleansing. Where a group of people are not though of as people, but instead dehumanised into a person with a horrible disease. It becomes so easy to write a paragraph on others when you can dehumanise them and instead talk about "the disease". Looking at stuff like that, when AS is in fact the person, is revolting and downright creepy. It's 2014, and I'm having to mention to people (not you) that I'm actually a person. Or worse, expected to prove it.


I don't think Nazi analogies are helpful. The idea of weeding out autistics is a violation of bodily autonomy and human dignity, but autistic people are not being put into gas chambers.

Redictio ad Hitlerum arguments are not a good way of convincing people you're right, it just turns people off.



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08 Aug 2014, 4:44 pm

PlainsAspie wrote:
I don't think Nazi analogies are helpful. The idea of weeding out autistics is a violation of bodily autonomy and human dignity, but autistic people are not being put into gas chambers.

Redictio ad Hitlerum arguments are not a good way of convincing people you're right, it just turns people off.
A lot of people don't know this, but during the 30's - 40's in Germany and Austria, ethnic cleaning actually started with the intellectually disabled. The ambulance would arrive at the hospital, they would be injected and buried in that hospital, and that was that. It was a legalised form of euthanasia, to "end their suffering" etc, of course it was amended afterwards to include people they don't like, the gays and jews. It's not rhetorical to say that this "cure" business, or this diseased or defective business mirrors the same values and notions held back then. Not in the form of gas chambers, no, but in the form of eugenics, via abortions, of detecting it in the womb, and then aborting the horrid "tragedy". There would also be people that would be very prideful if they managed to accomplish this.



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08 Aug 2014, 6:10 pm

Moromillas wrote:
A lot of people don't know this, but during the 30's - 40's in Germany and Austria, ethnic cleaning actually started with the intellectually disabled. The ambulance would arrive at the hospital, they would be injected and buried in that hospital, and that was that. It was a legalised form of euthanasia, to "end their suffering" etc, of course it was amended afterwards to include people they don't like, the gays and jews. It's not rhetorical to say that this "cure" business, or this diseased or defective business mirrors the same values and notions held back then. Not in the form of gas chambers, no, but in the form of eugenics, via abortions, of detecting it in the womb, and then aborting the horrid "tragedy". There would also be people that would be very prideful if they managed to accomplish this.

Just sounds to me a little like Autism Speaks.


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08 Aug 2014, 7:24 pm

Quote:
A lot of people don't know this, but during the 30's - 40's in Germany and Austria, ethnic cleaning actually started with the intellectually disabled. The ambulance would arrive at the hospital, they would be injected and buried in that hospital, and that was that. It was a legalised form of euthanasia, to "end their suffering" etc, of course it was amended afterwards to include people they don't like, the gays and jews. It's not rhetorical to say that this "cure" business, or this diseased or defective business mirrors the same values and notions held back then. Not in the form of gas chambers, no, but in the form of eugenics, via abortions, of detecting it in the womb, and then aborting the horrid "tragedy". There would also be people that would be very prideful if they managed to accomplish this.


If there is ever a pre-natal test discovered for autism, it will be one of the darkest days in the history of the human race. It will be used for eugenic purposes just like the down syndrome test. When autistic kids get killed or abused by parents and caregivers, people look for ways to make excuses for the parents. We have a culture that puts too little value on life. I don't deny that. To change this trend, we need to start with dialogue. When one makes Nazi analogies, it hurts ones credibility and people stop listening. That makes the necessary dialogue impossible



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08 Aug 2014, 7:47 pm

Moromillas wrote:
Yeah, the first paragraph, I had to stop reading or barf. It sounded like the sort of thing you would tell around a campfire as a corny horror story. "My little Timmy, he was such a happy and normal boy. Then one day, I saw it, the light in his eyes, just faded away, and he was, replaced with.... autism...." Perhaps my gripe is that such a stance would be given audience at all, or that it may be considered the default stance.

Here's an interesting book I found that has some relevance, perhaps there are parts you can relate to and find helpful, though I can't and shouldn't give guarantees:
http://www.amazon.com/Ido-Autismland-Cl ... 0988324709


So you didn't actually read it all? I got the distinct impression that a number of people who responded to this post didn't- either that or one of us is entirely missing the point of it... English isn't my first language so it wouldn't be the first time I understood something wrong. But I just reread it and I'm getting the same point still.

Funny you should mention that book. I was just looking at that book in the library thinking about getting it out. But I think it's done with facilitated communication, and I'm trying to get away from that idea because it's thought to be the facilitator's thoughts.


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09 Aug 2014, 6:57 pm

PlainsAspie wrote:
When one makes Nazi analogies, it hurts ones credibility and people stop listening. That makes the necessary dialogue impossible

I disagree, it's not really the same thing, those things aren't going to happen. lol

WelcomeToHolland wrote:
So you didn't actually read it all? I got the distinct impression that a number of people who responded to this post didn't- either that or one of us is entirely missing the point of it... English isn't my first language so it wouldn't be the first time I understood something wrong. But I just reread it and I'm getting the same point still.

Funny you should mention that book. I was just looking at that book in the library thinking about getting it out. But I think it's done with facilitated communication, and I'm trying to get away from that idea because it's thought to be the facilitator's thoughts.

I didn't read all of it, no. I did skim though it and saw other talking points and positions. Not sure if others read it or not. Like I said, it's possible my gripe is merely that the cure stance is given audience when it's bunkum. I imagine there would be a similar reaction if a scientific article included (straight up) a flat-earther's perspective.

Had a discussion with my friends (yes I have friends lol) about facilitator's and whether Ido used one to write his book. Agreeing that facilitated communication sounds super dodgy, we then scoured the internet for "video evidence" lol to find out how he wrote the book. Didn't have to look far, turns out he doesn't use a facilitator at all, but instead an iPad that's been propped up -- Probably with a bit of editing which is normal for any author, but it seems his words are definitely his.
http://www.nbclosangeles.com/news/local ... 75591.html
https://www.youtube.com/watch?v=JeBIw18aJk0



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10 Aug 2014, 4:40 am

Moromillas wrote:
Yeah, the first paragraph, I had to stop reading or barf. It sounded like the sort of thing you would tell around a campfire as a corny horror story. "My little Timmy, he was such a happy and normal boy. Then one day, I saw it, the light in his eyes, just faded away, and he was, replaced with.... autism...." Perhaps my gripe is that such a stance would be given audience at all, or that it may be considered the default stance.

Regressive Autism ie people speaking then stopping between roughly age 1 and 3 as well as losing other abilities is a scientifically documented fact http://sfari.org/news-and-opinion/news/ ... tism-cases

WelcomeToHolland wrote:
As for my son: I know it's frustrating for him. That's a huge reason why I wish he could communicate.

I hope he does someday. I am always in favor of Autistic s speaking in whatever form.
The venom towered you is misplaced. It would be better directed towered parents who want to fundamentally want to alter who their kids are.


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Last edited by ASPartOfMe on 10 Aug 2014, 8:18 pm, edited 1 time in total.

Moromillas
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10 Aug 2014, 7:14 am

ASPartOfMe wrote:
The venom towered you is misplaced. It would be better directed towered parents who want to fundamentally want to alter who their kids are.

Where is Holland getting venom? A different thread?



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11 Aug 2014, 3:15 pm

http://www.thinkingautismguide.com/2014 ... -container



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11 Aug 2014, 9:46 pm

Moromillas wrote:
Had a discussion with my friends (yes I have friends lol) about facilitator's and whether Ido used one to write his book. Agreeing that facilitated communication sounds super dodgy, we then scoured the internet for "video evidence" lol to find out how he wrote the book. Didn't have to look far, turns out he doesn't use a facilitator at all, but instead an iPad that's been propped up -- Probably with a bit of editing which is normal for any author, but it seems his words are definitely his.
http://www.nbclosangeles.com/news/local ... 75591.html
https://www.youtube.com/watch?v=JeBIw18aJk0


That's awesome, thanks.


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