Responses to that article I posted...

[conuly]

*clicks warily*

To the Editor:

Re "How About Not 'Curing' Us, Some Autistics Are Pleading" (front page, Dec. 20):

As the mother of a child who recovered from autism through intensive behavioral treatment, I respect that individual differences and the need for treatment are not mutually exclusive.

The article highlighted the school of thought that people with autism should not be treated because their autism is what makes them special.

Everyone, no matter who, should be respected and appreciated for his or her uniqueness. Parents of children with autism want most of the same things as parents of typical children. They want the best for them: to help their children get along in the world, to communicate, interact and to make friends.

Treatment is not the enemy. Treatment for autism can be seen as the equivalent of schooling for the typical child. Both can help children achieve their full potential by identifying and nurturing core strengths and individual differences.

Why shouldn't children with autism have the same opportunities to learn and grow as typical children?

Karen Siff Exkorn
Sparkill, N.Y., Dec. 20, 2004
The writer is the author of a forthcoming book about autism.

Missing the point number one!

To the Editor:

As the mother of a young autistic adult, I thank you for acknowledging the pro-autistic point of view. Understanding and acceptance of our kids is a long way down the road, but I look forward to the day they will be welcome to live in the world as autistic people.

Anne Bevington
Pacifica, Calif., Dec. 20, 2004

Getting the point! Yay!

To the Editor:

It is so exciting to see in print that maybe autism is not a plague to be stamped out. My son is not a plague or a tragedy; he's a great kid with a good sense of humor and an awesome knowledge of old movies. What really needs to be fixed is how the world looks at autism.

Jeanine Kelly
Chester, Va., Dec. 20, 2004

And another one got the point.

To the Editor:

I am 13 years old. I am autistic. My parents did an A.B.A. (Applied Behavior Analysis) program. I am glad I can talk. I can say how I feel. I've been to London. I can talk about what I want to talk about. I am interested in politics. I can talk about politics. I did three years of treatment before A.B.A. I could not talk before I had A.B.A.

Aaron B. Epelbaum
Brooklyn, Dec. 20, 2004

Hard to argue, though I think he's also missed the point.

To the Editor:

Autism, perhaps more than many other diagnoses, presents a broad range of manifestations, and one treatment (or nontreatment) does not fit all. Your article glosses over this fact and could be misinterpreted as making a case for not investigating the etiologies of autism or possible treatments (for those who need to be treated).

As a doctor who cares for many patients with autism and as the uncle of an autistic nephew, I know that the research needs to be done to help many of my patients and my nephew reach their full potential.

Gary Mirkin, M.D.
Great Neck, N.Y., Dec. 20, 2004

True enough, I suppose.

To the Editor:

As the parent of a 13-year-old son with autism and as the friend of many families of children with various types of autism, I can say the experiences cited bear little resemblance to the reality faced by most.

One of the hallmarks of autism is the lack of self-awareness, social cognition and behavioral flexibility.

The self-awareness of those representatives of the "autistic liberation movement" you interviewed is something parents and caretakers of children with autism could only wish for.

There are no treatments that change whatever the root causes of autism may be. Nor are there ways of changing the world to make it kinder to our children. What we can and must do is to use proven and humane therapies like Applied Behavior Analysis and encourage research into other treatment methods.

David Schwartz
Spring, Tex., Dec. 20, 2004

GAH!!!!!

Comments

[darbdash.livejournal.com]

Ugh. There are times when I wish that those of us who stand up and want recognition could go door to door and give our points. David Schwartz definately needs a visit.

[conuly]

He also needs to learn how to count. He says one, but lists three. And makes hugeass assumptions about people's abilities.

[darbdash.livejournal.com]

That he does. He also assumes to know exactly what goes on in every autistic`s head. This is exactly why I say that we should stand up, be heard, and put a face on autism. :)

[conuly]

He's also a pessimist. "We can't *possibly* change people's minds!!!!"

Unless he just doesnt' want to, which is a sad sad thing.

[darbdash.livejournal.com]

Eh. He`s probably the type that believes that there`s only ONE way that everyone should think. And if you don`t fit into said box, you need fixing, so you can fit squarely into the box.

Sad, really. He thinks that there`s no way he can ever make the world a better place for his children. What does he think that many of us are trying to do? Because if it`s a musical number, I obviously haven`t been to the rehersals lately.

[conuly]

You haven't? Don't you know, you've got the best part! You're the person who sings a lot!

[darbdash.livejournal.com]

Oh crap. When in doubt... fake it!

*Launches into "Luck Be a Lady Tonight"*

[gendertraitor.livejournal.com]

You can't change people's minds, but you can change their brains?

O-kay.

from <lj user=asperger>

[quartertothree.livejournal.com]

I have to agree with you; that David Schwartz guy... Wow. I wonder if it occurred to him to try and ASK his son or the children of his friends how they felt about their autism.

Re: from <lj user=asperger>

[conuly]

I'm just waiting for somebody to show up and flame ABA. I'm surprised it's taking so long.

Re: from <lj user=asperger>

[celticess.livejournal.com]

Despite it being editoral comment take it with a grain of salt. They post what they want because it might ellicit some reaction they find productive or at least benificiary to them. I observed this when my daughter was daying and my ex dragged her through the freaking press. One reporter wasn't too bad but I've developed a rather deep dislike of the Editor of BC Womens Magazine.(I feel she misrepresented a few facts and that things were exploited for possible monitary gain... also that they didn't verify certain facts before publishing)

Re: from <lj user=asperger>

[wakasplat.livejournal.com]

This is what I wrote to the editor in response (do they run responses to letters to the editor?):

When I was near the age of the David Schwartz's son, I wasn't considered self-aware, my institutional records labeled me low-functioning and said my developmental disorder prevented me from having a personality.

You can't measure those things in another person. Do you know what it's like to hear you're not self-aware, or an empty non-person? I do.

People like Schwartz decided things for me, telling activist autistics they were nothing like me. Now that I am able to communicate my opinions, they say I'm nothing like me either. We're only allowed to communicate when
certain parents like what we say. If we liked ABA they don't question us, but if we hated it we're "anomalies". If we can't use standard language, they assume unawareness and decide for us.

Autistic liberation isn't about denying help, it's about ethics and ending all autistic people's catch-22 of powerlessness.

I also included a link to Past, Present, and Future (http://www.autistics.org/library/time.html), which makes the same point but more nuanced because it's not limited to 150 words.

Re: from <lj user=asperger>

[conuly]

Sometimes they do. If there's enough of a response to merit running letters to letters.

[spitefairy.livejournal.com]

My thoughts on treatment is pretty much this: If you can provide treatment that prevents suffering and does not cause greater suffering then it is generally a good thing (of course there are exceptions). I don't really know much about ABA though.

From my experience autism is vastly different from person to person and especially between genders, so it's ridiculous to say Any treatment should be blanketly applied or ignored.

[wakasplat.livejournal.com]

That depends on what the "treatment" is.

I mean there are people who genuinely believe that slapping and shocking autistic people is "treatment". This is still done. I personally believe that that's actually called torture, and that torture is never an acceptable treatment no matter what results it achieves. (It can certainly achieve results.)

I think it's fine to issue a blanket condemnation of torture, and also of snake oil (which isn't treatment either, it just makes desperate parents spend money).

[conuly]

And then they write books and are called miracle workers.

Or their kids write books, whatever, you know who gets all the credit.

[wakasplat.livejournal.com]

On the topic of miracle workers:

this story (http://groups-beta.google.com/group/alt.support.autism/msg/b8005d5b4aca91ec) shows how some of the credit gets badly misplaced.

[spitefairy.livejournal.com]

Might want to check out the first sentence though, where I said treatment being something that doesn't cause more suffering than it helps. (I leave room for some suffering, because almost all work towards "health" is relatively obnoxious)

[maelorin]

sayeth david (from tex-ass):
There are no treatments that change whatever the root causes of autism may be.
what does davey-boy know that we don't?
eugenics works, but it's neither foolproof, nor palatable.

Nor are there ways of changing the world to make it kinder to our children.
not only pessimistic, but wrong - on so many levels.
if bush can make the world less kind to our children, surely it is possible to go the other way?

What we can and must do is to use proven and humane therapies like Applied Behavior Analysis and encourage research into other treatment methods.
what's this "Applied Behavior Analysis"?

it seems to me that the whole 'thing' about 'curing' every darn thing that people think is not 'normal' is ultimately self-destructive. particularly when what is often meant is not 'natural' ... too often people assume the social stuff to be 'easy' and 'natural' when it is actually practically all learnt behaviours - and auties need help learning.

a little 'treatment' helping 'normal' people to not only realise that autism is quite natural, but the challenges that arise on both sides (autie and nt) can be quite enriching. this doesn't mean that the effort should not be made to help auties as much as posisble, but it doesn't have to be all one way?

i once described myself as socially dyslexic, and the penny dropped - "oh, you have trouble learning the social stuff!" a little thought from others goes a long way.

most of my friends were surprised when i told them i'm an aspie, but so far it's never been a problem. in fact, i think some of them enjoy the whole darn thing a little too much :)

[flirbnic.livejournal.com]

Though it was almost certainly unintentional, and it's being used in a sentence that is very pessimistic and wrong, I think "kinder to our children" is a really good play on words.

[maelorin]

you're reading 'kinder' as the german for children, right. coz, yeah, that is/would be a cute play on words.

[celticess.livejournal.com]

I don't subscribe to the times so I read that article through someones paste to No_Pity. You don't happen to have the editors email do you? Perhaps they need a dose of perspective from a place that does handle issues different. I know from my own disabled son and I live in BC where by comparison to what I hear out of the US treats children with disabilities very different.

Also of course I like some are one of the ones that probably confuse some of the more negative parents of autistic kids. When they try the functioning line I can point out how I was when small and how my son was though he's not autistic.

[conuly]

You can register for the times free, the email is on one of their pages.

[elcapitane.livejournal.com]

You can include this one:

To the editor:

I am someone who has Asperger's and I believe that the world shouldn't cure us, because that would imply something is horribly wrong. I myself speak 9 different languages fluently, I work on computer systems for the government, and have travelled abroad and experienced things many "normal" Americans have never even heard of.

I have also experienced the darker side of being in the Autistic Spectrum. The constant torment for simply wanting to be myself, and not conforming to what everyone else expects of me. I've seen what the world is about, and parts of it frighten me quite frankly. As I've said to others, when they ask my why I don't want to be normal, I say, "Normal? Compared to what?"

Paul
Florida

[darbdash.livejournal.com]

Ugh. There are times when I wish that those of us who stand up and want recognition could go door to door and give our points. David Schwartz definately needs a visit.

[conuly]

He also needs to learn how to count. He says one, but lists three. And makes hugeass assumptions about people's abilities.

[darbdash.livejournal.com]

That he does. He also assumes to know exactly what goes on in every autistic`s head. This is exactly why I say that we should stand up, be heard, and put a face on autism. :)

[conuly]

He's also a pessimist. "We can't *possibly* change people's minds!!!!"

Unless he just doesnt' want to, which is a sad sad thing.

[darbdash.livejournal.com]

Eh. He`s probably the type that believes that there`s only ONE way that everyone should think. And if you don`t fit into said box, you need fixing, so you can fit squarely into the box.

Sad, really. He thinks that there`s no way he can ever make the world a better place for his children. What does he think that many of us are trying to do? Because if it`s a musical number, I obviously haven`t been to the rehersals lately.

[conuly]

You haven't? Don't you know, you've got the best part! You're the person who sings a lot!

[darbdash.livejournal.com]

Oh crap. When in doubt... fake it!

*Launches into "Luck Be a Lady Tonight"*

[gendertraitor.livejournal.com]

You can't change people's minds, but you can change their brains?

O-kay.

from <lj user=asperger>

[quartertothree.livejournal.com]

I have to agree with you; that David Schwartz guy... Wow. I wonder if it occurred to him to try and ASK his son or the children of his friends how they felt about their autism.

Re: from <lj user=asperger>

[conuly]

I'm just waiting for somebody to show up and flame ABA. I'm surprised it's taking so long.

Re: from <lj user=asperger>

[celticess.livejournal.com]

Despite it being editoral comment take it with a grain of salt. They post what they want because it might ellicit some reaction they find productive or at least benificiary to them. I observed this when my daughter was daying and my ex dragged her through the freaking press. One reporter wasn't too bad but I've developed a rather deep dislike of the Editor of BC Womens Magazine.(I feel she misrepresented a few facts and that things were exploited for possible monitary gain... also that they didn't verify certain facts before publishing)

Re: from <lj user=asperger>

[wakasplat.livejournal.com]

This is what I wrote to the editor in response (do they run responses to letters to the editor?):

When I was near the age of the David Schwartz's son, I wasn't considered self-aware, my institutional records labeled me low-functioning and said my developmental disorder prevented me from having a personality.

You can't measure those things in another person. Do you know what it's like to hear you're not self-aware, or an empty non-person? I do.

People like Schwartz decided things for me, telling activist autistics they were nothing like me. Now that I am able to communicate my opinions, they say I'm nothing like me either. We're only allowed to communicate when
certain parents like what we say. If we liked ABA they don't question us, but if we hated it we're "anomalies". If we can't use standard language, they assume unawareness and decide for us.

Autistic liberation isn't about denying help, it's about ethics and ending all autistic people's catch-22 of powerlessness.

I also included a link to Past, Present, and Future (http://www.autistics.org/library/time.html), which makes the same point but more nuanced because it's not limited to 150 words.

Re: from <lj user=asperger>

[conuly]

Sometimes they do. If there's enough of a response to merit running letters to letters.

[spitefairy.livejournal.com]

My thoughts on treatment is pretty much this: If you can provide treatment that prevents suffering and does not cause greater suffering then it is generally a good thing (of course there are exceptions). I don't really know much about ABA though.

From my experience autism is vastly different from person to person and especially between genders, so it's ridiculous to say Any treatment should be blanketly applied or ignored.

[wakasplat.livejournal.com]

That depends on what the "treatment" is.

I mean there are people who genuinely believe that slapping and shocking autistic people is "treatment". This is still done. I personally believe that that's actually called torture, and that torture is never an acceptable treatment no matter what results it achieves. (It can certainly achieve results.)

I think it's fine to issue a blanket condemnation of torture, and also of snake oil (which isn't treatment either, it just makes desperate parents spend money).

[conuly]

And then they write books and are called miracle workers.

Or their kids write books, whatever, you know who gets all the credit.

[wakasplat.livejournal.com]

On the topic of miracle workers:

this story (http://groups-beta.google.com/group/alt.support.autism/msg/b8005d5b4aca91ec) shows how some of the credit gets badly misplaced.

[spitefairy.livejournal.com]

Might want to check out the first sentence though, where I said treatment being something that doesn't cause more suffering than it helps. (I leave room for some suffering, because almost all work towards "health" is relatively obnoxious)

[maelorin]

sayeth david (from tex-ass):
There are no treatments that change whatever the root causes of autism may be.
what does davey-boy know that we don't?
eugenics works, but it's neither foolproof, nor palatable.

Nor are there ways of changing the world to make it kinder to our children.
not only pessimistic, but wrong - on so many levels.
if bush can make the world less kind to our children, surely it is possible to go the other way?

What we can and must do is to use proven and humane therapies like Applied Behavior Analysis and encourage research into other treatment methods.
what's this "Applied Behavior Analysis"?

it seems to me that the whole 'thing' about 'curing' every darn thing that people think is not 'normal' is ultimately self-destructive. particularly when what is often meant is not 'natural' ... too often people assume the social stuff to be 'easy' and 'natural' when it is actually practically all learnt behaviours - and auties need help learning.

a little 'treatment' helping 'normal' people to not only realise that autism is quite natural, but the challenges that arise on both sides (autie and nt) can be quite enriching. this doesn't mean that the effort should not be made to help auties as much as posisble, but it doesn't have to be all one way?

i once described myself as socially dyslexic, and the penny dropped - "oh, you have trouble learning the social stuff!" a little thought from others goes a long way.

most of my friends were surprised when i told them i'm an aspie, but so far it's never been a problem. in fact, i think some of them enjoy the whole darn thing a little too much :)

[flirbnic.livejournal.com]

Though it was almost certainly unintentional, and it's being used in a sentence that is very pessimistic and wrong, I think "kinder to our children" is a really good play on words.

[maelorin]

you're reading 'kinder' as the german for children, right. coz, yeah, that is/would be a cute play on words.

[celticess.livejournal.com]

I don't subscribe to the times so I read that article through someones paste to No_Pity. You don't happen to have the editors email do you? Perhaps they need a dose of perspective from a place that does handle issues different. I know from my own disabled son and I live in BC where by comparison to what I hear out of the US treats children with disabilities very different.

Also of course I like some are one of the ones that probably confuse some of the more negative parents of autistic kids. When they try the functioning line I can point out how I was when small and how my son was though he's not autistic.

[conuly]

You can register for the times free, the email is on one of their pages.

[elcapitane.livejournal.com]

You can include this one:

To the editor:

I am someone who has Asperger's and I believe that the world shouldn't cure us, because that would imply something is horribly wrong. I myself speak 9 different languages fluently, I work on computer systems for the government, and have travelled abroad and experienced things many "normal" Americans have never even heard of.

I have also experienced the darker side of being in the Autistic Spectrum. The constant torment for simply wanting to be myself, and not conforming to what everyone else expects of me. I've seen what the world is about, and parts of it frighten me quite frankly. As I've said to others, when they ask my why I don't want to be normal, I say, "Normal? Compared to what?"

Paul
Florida