Re: Re: Tito, the latest toy of CAN...

[Guest guest]

FC is frowned upon by modern practitioners as it is " artificial " . It maybe

be useful as a stepping stone to something else, but it is, at best,

one-way.

PECS is far superior since it is not only two-way, but very adaptable &

portable.

http://www.pecs.com/

I am not sure autism CAN be cured or even should be. It has been said that

the world would be a boring, dry place without any " notable sufferers " to

contribute.

Great results from ! Makes me wonder if its the NT teachers in the

school system who are the disabled ones.

Colin.

Re: Re: " Tito " , the latest toy of CAN...

At 11:55 PM 7/16/2003 +0000, you wrote:

> As for Tito, I have to wonder if the reason he doesn't talk in

the

>first place is because he is scared to death of the people around him. I

>have met quite a few people whose parents bought into FC and the parents

are

>generally really scary, intolerant, impatient people.

You've met me too Jerry..... " scary, intolerant, impatient " ??

a couple of notes I wrote following the original airing of the show back in

January

60II@...

.. Breaking The Silence

Great story..... not exactly a " new breakthrough " .

My Autistic son started typing at 3, started talking at 6 and at 15

expresses himself better on paper than verbally. He is in grade 10, fully

integrated in the regular school system, with a teachers aide, taking

academic courses and doing well.

Facilitated Communication, whether the support is at the wrist or, as we

saw with Dov, the shoulder or leg, or with Tito, his mother's presence in

the room, is NOT new.

Oddly enough it's not a " cure " either, coming from CAN (Cure Autism Now).

FC (Facilitated Communication) is something it seems to me more often

practiced by those of us on the other side of the fence - the ones who have

accepted Autism and Autistics and aim to understand them as individuals and

have as priorities not to " rid the world of their kind " but to give them a

communication system so that we may better understand each other and all be

happier.

Oh, and by the way..... we prefer not to be called " sufferers " (From your

Web Page: Notable Sufferers: Among those who are thought to have exhibited

traits related to autism or Asperger's Syndrome (a milder version of the

disease) are inventor Edison (left), novelist Jane Austen, and

philosopher Ludwig Wittgenstein.)

-jypsy (janet norman-bain)

Asperger's mom of

Autistic

and

Aspergers Ben

**************

From another letter

.......

Now we have this " New Breakthrough " in Autism..... Cure Autism Now has

found a wonderfully articulate and poetic independent writer and along with

the Dr who " invented " the Fast ForWord Auditory Integration Training

program (AIT like FC get's filed under " Voodoo " in many Autism spots) seem

to intend to prove, in a round about way without actually putting it this

way, that Facilitated Communication is really for real.

The " experts " are choosing to study this one independent writer/typer,

having decided he is indeed for real, and are interested in what he has to

say about being Autistic. Hard to believe with all that CAN's founders have

done in the past 7 years it never occurred to Portia to ask a verbal

Autistic " why do you flap? " and " why can't you look in my eyes " . Verbal

ability does not change the answers to those questions, nor does the

severity of Autism. This is just another case of the Autism community not

listening to (or even asking) the Autistic community.

is not as articulate or poetic as Tito. 's mother is not the

" taskmaster " that Tito's mom is. I never withheld food until he wrote an

essay or forced him to communicate outside of doing his school work and

homework. I'm not in his face all day. I aimed for independent typing with

because I knew he was capable of it. If there was a soul left who

doubted that 's typing was his own when we held his wrist, when he went

independent at 8 those doubts were put to rest.

.......

In all fairness though Jerry, I know some of those scary, intolerant,

impatient parents too.

But.... I also know about FC

I put Tito's mother's " tactics " in the same pile as ABA.

We gave sign, pictures, pixture/word boards, gesture, any number of

communication systems to use when he was little

FC was the only one that let him say exactly what he wanted to say....

letter by letter word by word, without having to use the words we had given

him to choose from.

is independent now (has been since grade 3 (age 8) at his initiative

though he still often needs to be around me to do homework)

he types " over 40 " wpm - First year of formal keyboarding was this year -

ITC (Information Technology Communication) 83%

81% average in grade 10 -

English 73%

Geography 78%

History 77%

Science 89%

Math 83%

ITC 83%

Phys Ed 85%

Academic courses - some adaptations - no modifications

Next years courses are much more fun.....

Music (Mus 801X-128) - Styles of Popular Music - Grade XI or XII - Open - 1

credit

The Styles of Popular Music course will cover the major styles of rock and

roll from the 1950's to the present. The course will follow the history of

rock and roll beginning with rhythm and blues, country and western, and

progressing through to today's popular styles. Students will examine the

musical elements, the major artists, and the social, political, and

economic aspects related to each style and era of popular music.

He'll be in his element that class! Don't think I'll mind helping out with

homework either.....

-jypsy

> Jerry

>Newport

>

>_________________________________________________________________

>Help STOP SPAM with the new MSN 8 and get 2 months FREE*

>http://join.msn.com/?page=features/junkmail

>

>

>

>

[Guest guest]

,

I didn't explain my POV correctly:

PECS is better than FC for starting out with young non-verbal children.

PECS, being both expressive and receptive, provides the basics of

communication as a stepping stone to more formalized communication.

Language is after all, just a collection of symbols with generally accepted

meanings.

FC is obviously the next step once the basics of language are mastered, or

for an older person.

FC in a young child does not reduce the frustration levels by much, as it is

only expressive, not usually portable and mostly not adaptable. It also

requires a degree of intervention which can be Soma-like if used

incorrectly.

Colin (Usually types better than he speaks, but its getting late).

Re: Re: " Tito " , the latest toy of CAN...

>

> > FC is frowned upon by modern practitioners as it is " artificial " . It

maybe

> > be useful as a stepping stone to something else, but it is, at best,

> > one-way.

>

> It's not one-way any more than typing is one-way. The main concern is

> minimizing influence and moving toward independent typing where

> possible. Teaching reciprocity can be done in other ways, alongside it

> or another expressive-language-learning method.

>

> > PECS is far superior since it is not only two-way, but very adaptable &

> > portable.

> > http://www.pecs.com/

>

> I agree that it's good as a backup or a stepping stone, but imagine

> trying to carry out high-level discussion with a limited set of words.

> I think *some* form of teaching typing (FC or otherwise) is a better

> alternative when it comes to complex non-oral communication, because it

> allows the formation of unlimited words.

>

> I have set of PCS symbols I use for word-finding emergencies, and I

> might use the things to organize my house, too (I think their full

> possibilities have never been realized, especially for those of us who

> have another way of expressing language) but it's become painfully

> obvious to me in flipping through the binders that complex conversations

> can get pretty hard with them.

>

> The main thing PECS (as a method) does is give immediate feedback on

> conversational reciprocity. Which can be useful, but eventually a lot

> of people want to have further conversations than that. A lot of people

> with (some forms of) CP and other conditions who can't talk eventually

> get really annoyed with having to use pre-defined symbols.

>

> , who types in two-way conversations

>

> --

> " If a cat does something, we call it instinct; if we do the same thing,

> for the same reason, we call it intelligence. " -Will Cuppy

>

>

>

>

[Guest guest]

> FC is frowned upon by modern practitioners as it is " artificial " . It maybe

> be useful as a stepping stone to something else, but it is, at best,

> one-way.

It's not one-way any more than typing is one-way. The main concern is

minimizing influence and moving toward independent typing where

possible. Teaching reciprocity can be done in other ways, alongside it

or another expressive-language-learning method.

> PECS is far superior since it is not only two-way, but very adaptable &

> portable.

> http://www.pecs.com/

I agree that it's good as a backup or a stepping stone, but imagine

trying to carry out high-level discussion with a limited set of words.

I think *some* form of teaching typing (FC or otherwise) is a better

alternative when it comes to complex non-oral communication, because it

allows the formation of unlimited words.

I have set of PCS symbols I use for word-finding emergencies, and I

might use the things to organize my house, too (I think their full

possibilities have never been realized, especially for those of us who

have another way of expressing language) but it's become painfully

obvious to me in flipping through the binders that complex conversations

can get pretty hard with them.

The main thing PECS (as a method) does is give immediate feedback on

conversational reciprocity. Which can be useful, but eventually a lot

of people want to have further conversations than that. A lot of people

with (some forms of) CP and other conditions who can't talk eventually

get really annoyed with having to use pre-defined symbols.

, who types in two-way conversations

--

" If a cat does something, we call it instinct; if we do the same thing,

for the same reason, we call it intelligence. " -Will Cuppy

[Guest guest]

No problem. I misexplained.

Re: Re: " Tito " , the latest toy of CAN...

>

>

> > I didn't explain my POV correctly:

> > PECS is better than FC for starting out with young non-verbal children.

> > PECS, being both expressive and receptive, provides the basics of

> > communication as a stepping stone to more formalized communication.

> > Language is after all, just a collection of symbols with generally

accepted

> > meanings.

>

> Oh, that makes more sense. I misunderstood.

>

>

>

> --

> " Because there is no way for good people to admit just how bloody

> uncomfortable they are with us, they distance themselves from their

> fears by devising new ways toerase us from the human landscape, all the

> while deluding themselves that it is for our benefit. " -Cheryl Marie

> Wade

>

>

>

>

[Guest guest]

" young non-verbal children " ..... how young?

started FC at 3

why " start out " with only one system?

refused to do the E in PECS,

all the better - we traded " exchange " for pointing....

assume competence

-jypsy

At 01:25 AM 7/18/2003 -0700, you wrote:

>

>

> > I didn't explain my POV correctly:

> > PECS is better than FC for starting out with young non-verbal children.

> > PECS, being both expressive and receptive, provides the basics of

> > communication as a stepping stone to more formalized communication.

> > Language is after all, just a collection of symbols with generally accepted

> > meanings.

>

>Oh, that makes more sense. I misunderstood.

>

>

>

>--

> " Because there is no way for good people to admit just how bloody

>uncomfortable they are with us, they distance themselves from their

>fears by devising new ways toerase us from the human landscape, all the

>while deluding themselves that it is for our benefit. " -Cheryl Marie

>Wade

>

>

>

>

[Guest guest]

> I didn't explain my POV correctly:

> PECS is better than FC for starting out with young non-verbal children.

> PECS, being both expressive and receptive, provides the basics of

> communication as a stepping stone to more formalized communication.

> Language is after all, just a collection of symbols with generally accepted

> meanings.

Oh, that makes more sense. I misunderstood.

--

" Because there is no way for good people to admit just how bloody

uncomfortable they are with us, they distance themselves from their

fears by devising new ways toerase us from the human landscape, all the

while deluding themselves that it is for our benefit. " -Cheryl Marie

Wade

[Guest guest]

See my comments below ...

Colin.

Re: Re: " Tito " , the latest toy of CAN...

> " young non-verbal children " ..... how young?

> started FC at 3

Obviously 3 works! Depends how soon the diagnosis is given. 3 is fairly

early.

> why " start out " with only one system?

Use as many or as few as you need. There is a scale ranging from concrete

to abstract, so I imgaine one would use two methods at adjacent levels.

> refused to do the E in PECS,

> all the better - we traded " exchange " for pointing....

Obviously he was passed that level in that function.

> assume competence

I agree.

>

> -jypsy

>

>

> At 01:25 AM 7/18/2003 -0700, you wrote:

> >

> >

> > > I didn't explain my POV correctly:

> > > PECS is better than FC for starting out with young non-verbal

children.

> > > PECS, being both expressive and receptive, provides the basics of

> > > communication as a stepping stone to more formalized communication.

> > > Language is after all, just a collection of symbols with generally

accepted

> > > meanings.

> >

> >Oh, that makes more sense. I misunderstood.

> >

> >

> >

> >--

> > " Because there is no way for good people to admit just how bloody

> >uncomfortable they are with us, they distance themselves from their

> >fears by devising new ways toerase us from the human landscape, all the

> >while deluding themselves that it is for our benefit. " -Cheryl Marie

> >Wade

> >

> >

> >

> >

[Guest guest]

At 12:17 AM 7/18/2003 -0700, you wrote:

>FC is frowned upon by modern practitioners as it is " artificial " . It maybe

>be useful as a stepping stone to something else, but it is, at best,

>one-way.

What it is, " at best " , obviously you have not really experienced

>PECS is far superior since it is not only two-way, but very adaptable &

>portable.

>http://www.pecs.com/

I can't agree. FC is as two-way, adaptable & portable as FC. We've done

both..... you?

>I am not sure autism CAN be cured or even should be. It has been said that

>the world would be a boring, dry place without any " notable sufferers " to

>contribute.

I am absolutely anti-cure (and a member of the Can CAN ring...) . is

still very much Autistic - none of us " suffer " . I gave him a communication

system (FC) that enabled him to be fully integrated in school (with a TA)

before he could talk. He has always done grade level or above work. (He has

always done math & spelling tests with a pencil.)

http://PlanetAutism.com/acceptance.htm - This piece is something I wrote,

originally for our local paper (The Northern Star), on the occasion of

's graduation from junior high at Gulf Shore School in 2002, it's in

the July/Aug Aspergers Autism Digest Mag.

>Great results from ! Makes me wonder if its the NT teachers in the

>school system who are the disabled ones.

Why? They are the ones who accepted and FC and everything else his

Autism brought to the table. When does run into a disabled NT teacher,

he does his best to enlighten.....

>Colin.

-jypsy

> Re: Re: " Tito " , the latest toy of CAN...

>

>

>At 11:55 PM 7/16/2003 +0000, you wrote:

>

>

> > As for Tito, I have to wonder if the reason he doesn't talk in

>the

> >first place is because he is scared to death of the people around him. I

> >have met quite a few people whose parents bought into FC and the parents

>are

> >generally really scary, intolerant, impatient people.

>

>You've met me too Jerry..... " scary, intolerant, impatient " ??

>

>a couple of notes I wrote following the original airing of the show back in

>January

>

>60II@...

>. Breaking The Silence

>

>Great story..... not exactly a " new breakthrough " .

>

>My Autistic son started typing at 3, started talking at 6 and at 15

>expresses himself better on paper than verbally. He is in grade 10, fully

>integrated in the regular school system, with a teachers aide, taking

>academic courses and doing well.

>

>Facilitated Communication, whether the support is at the wrist or, as we

>saw with Dov, the shoulder or leg, or with Tito, his mother's presence in

>the room, is NOT new.

>

>Oddly enough it's not a " cure " either, coming from CAN (Cure Autism Now).

>FC (Facilitated Communication) is something it seems to me more often

>practiced by those of us on the other side of the fence - the ones who have

>

>accepted Autism and Autistics and aim to understand them as individuals and

>have as priorities not to " rid the world of their kind " but to give them a

>communication system so that we may better understand each other and all be

>happier.

>

>Oh, and by the way..... we prefer not to be called " sufferers " (From your

>Web Page: Notable Sufferers: Among those who are thought to have exhibited

>traits related to autism or Asperger's Syndrome (a milder version of the

>disease) are inventor Edison (left), novelist Jane Austen, and

>philosopher Ludwig Wittgenstein.)

>

>-jypsy (janet norman-bain)

>

>Asperger's mom of

>Autistic

>and

>Aspergers Ben

>

>**************

> From another letter

>......

>Now we have this " New Breakthrough " in Autism..... Cure Autism Now has

>found a wonderfully articulate and poetic independent writer and along with

>the Dr who " invented " the Fast ForWord Auditory Integration Training

>program (AIT like FC get's filed under " Voodoo " in many Autism spots) seem

>to intend to prove, in a round about way without actually putting it this

>way, that Facilitated Communication is really for real.

>

>The " experts " are choosing to study this one independent writer/typer,

>having decided he is indeed for real, and are interested in what he has to

>say about being Autistic. Hard to believe with all that CAN's founders have

>done in the past 7 years it never occurred to Portia to ask a verbal

>Autistic " why do you flap? " and " why can't you look in my eyes " . Verbal

>ability does not change the answers to those questions, nor does the

>severity of Autism. This is just another case of the Autism community not

>listening to (or even asking) the Autistic community.

>

> is not as articulate or poetic as Tito. 's mother is not the

> " taskmaster " that Tito's mom is. I never withheld food until he wrote an

>essay or forced him to communicate outside of doing his school work and

>homework. I'm not in his face all day. I aimed for independent typing with

> because I knew he was capable of it. If there was a soul left who

>doubted that 's typing was his own when we held his wrist, when he went

>independent at 8 those doubts were put to rest.

>......

>

>In all fairness though Jerry, I know some of those scary, intolerant,

>impatient parents too.

>But.... I also know about FC

>I put Tito's mother's " tactics " in the same pile as ABA.

>We gave sign, pictures, pixture/word boards, gesture, any number of

>communication systems to use when he was little

>FC was the only one that let him say exactly what he wanted to say....

>letter by letter word by word, without having to use the words we had given

>him to choose from.

>

> is independent now (has been since grade 3 (age 8) at his initiative

>though he still often needs to be around me to do homework)

>he types " over 40 " wpm - First year of formal keyboarding was this year -

>ITC (Information Technology Communication) 83%

>81% average in grade 10 -

>English 73%

>Geography 78%

>History 77%

>Science 89%

>Math 83%

>ITC 83%

>Phys Ed 85%

>Academic courses - some adaptations - no modifications

>

>Next years courses are much more fun.....

>Music (Mus 801X-128) - Styles of Popular Music - Grade XI or XII - Open - 1

>credit

>The Styles of Popular Music course will cover the major styles of rock and

>roll from the 1950's to the present. The course will follow the history of

>rock and roll beginning with rhythm and blues, country and western, and

>progressing through to today's popular styles. Students will examine the

>musical elements, the major artists, and the social, political, and

>economic aspects related to each style and era of popular music.

>

>He'll be in his element that class! Don't think I'll mind helping out with

>homework either.....

>

>-jypsy

>

>

>

>

> > Jerry

> >Newport

> >

> >_________________________________________________________________

> >Help STOP SPAM with the new MSN 8 and get 2 months FREE*

> >http://join.msn.com/?page=features/junkmail

> >

> >

> >

> >

[Guest guest]

At 01:40 AM 7/18/2003 -0700, you wrote:

>See my comments below ...

>

>Colin.

and mine

-jypsy

> Re: Re: " Tito " , the latest toy of CAN...

>

>

> > " young non-verbal children " ..... how young?

> > started FC at 3

>Obviously 3 works! Depends how soon the diagnosis is given. 3 is fairly

>early.

Giving communication to a child without a communication system has little

to do with a Dx. 3 is very late to not be talking at all.

> > why " start out " with only one system?

>Use as many or as few as you need. There is a scale ranging from concrete

>to abstract, so I imgaine one would use two methods at adjacent levels.

labeling everything in a child's environment (I still have stickers in my

house... " floor " , " TV " , " door to basement " ) and filling it with books etc

( " My first 1000 Words " ...) goes a long way to making the abstract concrete.

If a child would not eat would you try one food at a time or a number of

foods to see which one(s) he/she prefered?

> > refused to do the E in PECS,

> > all the better - we traded " exchange " for pointing....

>Obviously he was passed that level in that function.

you had to be there..... he would not " play " the PECS game

> > assume competence

>I agree.

and that is the lesson in this whole thing

> >

> > -jypsy

> >

> >

> > At 01:25 AM 7/18/2003 -0700, you wrote:

> > >

> > >

> > > > I didn't explain my POV correctly:

> > > > PECS is better than FC for starting out with young non-verbal

>children.

> > > > PECS, being both expressive and receptive, provides the basics of

> > > > communication as a stepping stone to more formalized communication.

> > > > Language is after all, just a collection of symbols with generally

>accepted

> > > > meanings.

> > >

> > >Oh, that makes more sense. I misunderstood.

> > >

> > >

> > >

> > >--

> > > " Because there is no way for good people to admit just how bloody

> > >uncomfortable they are with us, they distance themselves from their

> > >fears by devising new ways toerase us from the human landscape, all the

> > >while deluding themselves that it is for our benefit. " -Cheryl Marie

> > >Wade

> > >

> > >

> > >

> > >

[Guest guest]

I am looking at the 60 minutes report...somewhere one word was wrong...

Not:

" If it wasn't for my mother I would have been a vegetable "

Rather:

" If it wasn't for my mother I would have SEEMED a vegetable "

Which I find a chilling concept.

None of us here is as non-linguistic (better than the rather silly

" non-verbal " maybe?) as Tito could have been. We cannot imagine what it

would be like to be intelligent, sensitive and so totally locked inside

ourselves. I, for one, do not even want to try and imagine it.

We only know a little of our non linguistic cousins, as maybe a person with

a club foot knows a little of the experience of paraplegia.

I will say, that whenever I see any mother trying to tout her clever child

around the world, I am always reminded of the movie " Gypsy " about the

remarkably pushy mother of stripper Gypsy Rose Lee, trying to find fame

through her children without counting the cost.

But apart from that aspect, Tito's alternative was probably to seem like a

vegetable for the rest of his life, while all the time being himself

inside...

Which was best?

Gaye

[Guest guest]

> " If it wasn't for my mother I would have SEEMED a vegetable "

> Which I find a chilling concept.

And also an untrue one.

There are rarely only two choices. He could have been taught in ways

that didn't involve hitting him.

I used to say, " If it weren't for Dr. King and Shepherd Treatment Center

I'd be in an institution by now. " They *taught* me that it was either

them or a (more restrictive) institution. Dr. King whacked me on the

leg until I'd look at him, and forced me to do all kinds of stuff by

threat of physical violence or withholding food. Our situations

differed in other particulars, but I did not need any of that, and

neither does Tito. I just was *taught* that there were only two options

(Shepherd or permanent institutionalization) when there were many, many

more.

> None of us here is as non-linguistic (better than the rather silly

> " non-verbal " maybe?) as Tito could have been. We cannot imagine what it

> would be like to be intelligent, sensitive and so totally locked inside

> ourselves. I, for one, do not even want to try and imagine it.

I've spent a little too extended time non-linguistically-communicative

in situations where communication would have been *really* good. I

would be cautious before generalizing about who on this list has

experienced what in their life. I don't know what others have and have

not experienced. I can't read minds. But I think there probably exist

others on this list who have spent much more prolonged time that way

than I have.

I've also spent time conceived basically as a piece of broken brain to

be handed around, managed, and decided about with no input possible from

me. I have some idea what it's like to be trapped with no way to say

anything.

> We only know a little of our non linguistic cousins, as maybe a person with

> a club foot knows a little of the experience of paraplegia.

I don't think, again, that you can generalize about our experiences

without getting inside our heads. Some of us have spent extended time

without a clear system of communicating effectively. It does not mean

that we have the *exact* life of any other person, but then I doubt that

many of us have the exact life of each other either. I don't think it's

anywhere near as far removed as club foot and paraplegia.

Also, non-linguistic might also be a misnomer. Non-speaking people who

can't type still often have language, just not expressive.

> But apart from that aspect, Tito's alternative was probably to seem like a

> vegetable for the rest of his life, while all the time being himself

> inside...

> Which was best?

My favorite answer in false forced-choice situations: Neither.

Real non-abusive teaching is best. It is not okay to settle for the

abuse saying that it's the only way, because abuse is not the only way

or the best way. There are ways to teach people that don't involve

hitting them so hard it disturbs everyone else around them.

And there's no such thing as a human vegetable anyway. It's a word

applied to people who cannot conceive of someone different being human

(and it's been applied to me at times when I was *well* aware it was

being said about me).

As far as " If it weren't for... " it's kind of a dangerous proposition in

itself. There is only one person I could say that about in my life, but

even there I don't know. Something else could have happened, for all I

know. It's impossible to know alternate timelines like that, and I tend

against weighing the responsibility that heavily on one person,

especially a person with an ego as big as Soma Mukhopadhyay's seems to

be getting.

--

" Let us celebrate the spirit of non-compliance that is the self

struggling to survive. Let us celebrate the unbowed head, the heart that

still dreams, the voice that refuses to be silent. " -Judi Chamberlin

[Guest guest]

> > We only know a little of our non linguistic cousins, as maybe a person with

> > a club foot knows a little of the experience of paraplegia.

> I don't think it's

> anywhere near as far removed as club foot and paraplegia.

Actually, I just thought of an analogy that might fit better:

Some of us here might have varying experiences of a broken back that

rendered our legs either fully or partially immobile for an extended

period of time (varying for each one of us) but where the spinal cord

regenerated either fully or partially, allowing us to use our legs again

anywhere from a little to a lot, with varying degrees of relapse into

the previous state. We also would have had varying degrees of awareness

that the regeneration might occur. And we would have as much knowledge

of permanent paraplegia as that sort of experience would provide.

And then some here, under that analogy, may have had club feet. Who

knows?

The experience of catatonia, for instance, definitely adds to the sense

of knowing what it's like to be an intelligent mind in a

non-communicative body. Combine that with alternate periods of

semi-communicativity and/or backwards-communicativity and add years into

the mix, one starts getting an idea.

Also a lot depends on awareness -- not communicating and not knowing one

*could* communicate, is not always a horrible thing from the inside.

--

For an autistic, being an 'inspiration' thus far means: " Good for you,

you've learned to extinguish your personality for my comfort! " -

DeGraf

[Guest guest]

***

Also a lot depends on awareness -- not communicating and not knowing one

*could* communicate, is not always a horrible thing from the inside.

***

Are you sure?

As sure as I was when I said that none of us here knows what it would be

like to be as non-linguistic as Tito might have been...

I am sure of that because we can all read and write as he can now.

, I do not truly read, I scan, I scan for two reasons:

a) Because I am dyslexic.

Because it was beaten into me.

However, the fact that I can read has been the only thing that saved my

sanity, many, many times over...I do not think I would have survived if I

couldn't read...what would I survive FOR?

Books are the only friends I have ever had.

The beating wasn't done out of love, or good intent, but the result was

beneficial to me.

I was raised with nothing but this from my own parents:

***

They *taught* me that it was either them or a (more restrictive)

institution.

***

That IS my entire experience of people really, after that, I shut down and

learned to " pass " as well and as fast as possible and live my life in

hiding.

I seem superficially articulate but am almost incapable of effective

communication. Often I do not see another human being from one month to the

next because there would be no point and a lot of stress and potential

problems. Scratch the surface and I may be one of the more isolated around.

So I do have some idea of a mild version of being locked inside myself.

For instance it took me three years to find a Doctor and communicate an

urgent medical problem.

Only today I was wondering, again, if there was any point in continuing to

survive as a lone, isolated " Dancer at the End of Time " , unable to work

among people for money, or know people as friends or aquaintances, unable to

seek out or tolerate any kind of " help " or " support " , unable to do anything

but find ways to pass time, kill time, " keep myself occupied " .

But at least I can read and speak.

I wince at the thought of Soma hitting the small Tito...that's it, my GUT

reaction...I wince...if I saw something like that I would either lash out at

the adult or call the cops. That is who I am.

Maybe there is another way...but at present we do not know what that

is...so, what I am saying is that we have no more right to try and sentence

Tito to solitary confinement inside his head (and decide he might like it)

than the NT world has to beat him.

I know that eradicates the possibility of any simple answer, but that is the

nature of a dilemna.

I do not excuse any form of bullying (and to me, a very large person hitting

a very small person IS bullying), my family belong in jail, if they are

still alive, and frankly I have no idea...but still...if they had to be such

sick, twisted b*st*rds, I wish they had also beaten SOME capacity for

interaction into me...but they never would have, because that would have

worked against their agenda.

Gaye

[Guest guest]

At 04:47 AM 7/18/2003 -0700, you wrote:

>Also a lot depends on awareness -- not communicating and not knowing one

>*could* communicate, is not always a horrible thing from the inside.

>

>

and not *wanting* to ........

unlike Tito, the choice - whatever the method - has always been *'s*

" horrible " is that lack of choice - there are far more than two it's true

one should not be hit to do anything....

got where he is because we followed HIS lead

probably helps he had an Aspie mom

a dad who probably meets HFA criteria

and yes we are all different, we all have our own frames of reference

is " verbal " but not " conversational "

his articulation is poor

I don't think he was *supposed* to talk

I know how intelligent he is, how much he knows

I can very easily imagine (and I thought I had no empathy!) " what it would

be like to be intelligent, sensitive and so totally locked inside ourselves. "

will likely not be " saying " in 20 years

the stuff he is typing today

There is NO excuse for abuse

-jypsy

________________________________

Ooops....Wrong Planet! Syndrome

Autism Spectrum Resources

www.PlanetAutism.com

jypsy@...

[Guest guest]

> ***

> Also a lot depends on awareness -- not communicating and not knowing one

> *could* communicate, is not always a horrible thing from the inside.

> ***

> Are you sure?

Yes. I remember. I don't mean *Tito* would find it this way. I mean I

have found it this way at times, and others I know have as well. (Just

because I can type at this instant doesn't mean I can't remember what it

was like not to.)

> As sure as I was when I said that none of us here knows what it would be

> like to be as non-linguistic as Tito might have been...

> I am sure of that because we can all read and write as he can now.

So you're saying that because we can read and write in a communicative

fashion, then we can't possibly remember what it was like not to? That

doesn't make any sense. It's like saying that if we learned something a

couple years ago, we can now no longer remember what it was like not to

know that thing. I don't know if other people's minds work that way,

but I can generally remember what a lot of things were like.

> The beating wasn't done out of love, or good intent, but the result was

> beneficial to me.

Yes, there can be good side-effects of bad stuff, but it doesn't excuse

the bad stuff or make the bad stuff the only way good stuff can happen.

> I wince at the thought of Soma hitting the small Tito...that's it, my GUT

> reaction...I wince...if I saw something like that I would either lash out at

> the adult or call the cops. That is who I am.

> Maybe there is another way...but at present we do not know what that

> is...so, what I am saying is that we have no more right to try and sentence

> Tito to solitary confinement inside his head (and decide he might like it)

> than the NT world has to beat him.

None of us have sentenced Tito to solitary confinement inside his head.

All some of us have said is that beating him is wrong, and inexcusable

no matter what the result was. Most of us are well aware of other

effective methods that have taught people to type, read, and

communicate, that have not involved beatings.

As far as " decide he might like it " , I was listing several real-life

possibilities for the state of not communicating deliberately. In

response to your comment that none of us know what it's like -- I was

trying to give some idea of what I remember it being like at various

times in my life. I can't help it if what was reality for me causes

some discomfort, although I did not intend to cause anyone any

discomfort. (I honestly didn't know that the idea that not

communicating isn't always unpleasant could be discomforting.)

One real possibility is not often caring that much. It doesn't mean

nobody should be taught to communicate; it just means that that's how I

have at certain points in my life and other people I know have at

certain points in their life experienced lack of communication. At

other times it's been hell. One can't say which one it would be for

another person. I suspect that if it were a lifetime, it would get

unpleasant, but again I was listing possibilities, not trying to make it

sound like it would necessarily be wonderful.

I can remember a time when I was not really aware of communication or of

people in the same sense I am now, and it was not all that unpleasant.

There were things, including sounds, and they kind of existed and I kind

of existed. Consistent awareness of people is what brought on some of

the first depression I ever experienced. It's not like that for

everybody, but I'm not unique there either. I'm glad in the end that I

am aware of people, but I have no idea if I would have felt any loss if

I never became aware, either. (Again, this is not an argument against

teaching autistic children, it's just an experiential fact of life for

me.)

I can also remember times when I couldn't move, certainly couldn't speak

or type, and was being poked and prodded and discussed by people trying

to figure out exactly where I escaped from and whether I was breathing

or not, while I contemplated how much I knew and how much they didn't

know I knew. And similar situations in different places where my entire

future was being discussed in front of me and I wasn't being let in on

it, and I couldn't contribute.

And of course several things in between these extremes. Yes, it can be

enjoyable, and it can be hell, not to be communicating at that instant,

depending on one's mindstate. I didn't say Tito would necessarily be

one or the other, just that both are possible, as are a lot of other

possibilities. You had stated that none of us could know what it was

like not to have language, and I was saying that I do remember what it

was like to have various degrees of non-language, even if I clearly have

language now.

(Language is one of my more precarious modes, and it goes away easily to

begin with, so even after acquiring it, it has partially or wholly

fritzed out on me a number of times for varying lengths of time. When

it's gone, I still don't miss it unless there's something I want to say

or understand with it. This isn't a statement of how anyone's life

should be but my own, although I have known others for whom this is

true.)

> I know that eradicates the possibility of any simple answer, but that is the

> nature of a dilemna.

It's not a dilemma. Dilemma involves two things, black and white, and

we're not looking at a situation with only two options. We're looking

at a situation that's been artificially painted (probably originally by

Soma) as only having two options, but that instead has several possible

options. It's the idea that this *is* a dilemma -- a choice of two

things and only two things -- that is oversimplified.

None of us are saying, " We wish Tito could never communicate " , we're

saying " We wish he was not abused and had been taught in some other

way. " Seeing that we've seen and talked about effective ways this could

happen, this makes *sense*. There *are* third and fourth and fifth

options. Wishing someone was not abused is not the same as wishing them

a life of solitary confinement, or as sentencing them to anything, even

if the abuse resulted in them paying attention to the world more.

Temple Grandin, among many others, has described much less abusive ways

of getting autistic children to pay attention.

Of *course* it's complex. But he should not have been abused, and that

much is pretty simple. Nor should I have been abused whether or not

there were good side-effects (there can be good side-effects to any

experience, but some are still bad things that shouldn't happen).

--

" Being against torture ought to be sort of a bipartisan thing. " -Karl

Lehenbauer

[Guest guest]

I have become (through hard experience) very wary of who try to force

choices onto another.

A piece of old Jewish wisdom goes something like " If you have to choice

between two options take the third. "

Colin.

RE: Re: " Tito " , the latest toy of CAN...

>

>

> > " If it wasn't for my mother I would have SEEMED a vegetable "

>

> > Which I find a chilling concept.

>

> And also an untrue one.

>

> There are rarely only two choices. He could have been taught in ways

> that didn't involve hitting him.

>

> I used to say, " If it weren't for Dr. King and Shepherd Treatment Center

> I'd be in an institution by now. " They *taught* me that it was either

> them or a (more restrictive) institution. Dr. King whacked me on the

> leg until I'd look at him, and forced me to do all kinds of stuff by

> threat of physical violence or withholding food. Our situations

> differed in other particulars, but I did not need any of that, and

> neither does Tito. I just was *taught* that there were only two options

> (Shepherd or permanent institutionalization) when there were many, many

> more.

>

> > None of us here is as non-linguistic (better than the rather silly

> > " non-verbal " maybe?) as Tito could have been. We cannot imagine what it

> > would be like to be intelligent, sensitive and so totally locked inside

> > ourselves. I, for one, do not even want to try and imagine it.

>

> I've spent a little too extended time non-linguistically-communicative

> in situations where communication would have been *really* good. I

> would be cautious before generalizing about who on this list has

> experienced what in their life. I don't know what others have and have

> not experienced. I can't read minds. But I think there probably exist

> others on this list who have spent much more prolonged time that way

> than I have.

>

> I've also spent time conceived basically as a piece of broken brain to

> be handed around, managed, and decided about with no input possible from

> me. I have some idea what it's like to be trapped with no way to say

> anything.

>

> > We only know a little of our non linguistic cousins, as maybe a person

with

> > a club foot knows a little of the experience of paraplegia.

>

> I don't think, again, that you can generalize about our experiences

> without getting inside our heads. Some of us have spent extended time

> without a clear system of communicating effectively. It does not mean

> that we have the *exact* life of any other person, but then I doubt that

> many of us have the exact life of each other either. I don't think it's

> anywhere near as far removed as club foot and paraplegia.

>

> Also, non-linguistic might also be a misnomer. Non-speaking people who

> can't type still often have language, just not expressive.

>

> > But apart from that aspect, Tito's alternative was probably to seem like

a

> > vegetable for the rest of his life, while all the time being himself

> > inside...

>

> > Which was best?

>

> My favorite answer in false forced-choice situations: Neither.

>

> Real non-abusive teaching is best. It is not okay to settle for the

> abuse saying that it's the only way, because abuse is not the only way

> or the best way. There are ways to teach people that don't involve

> hitting them so hard it disturbs everyone else around them.

>

> And there's no such thing as a human vegetable anyway. It's a word

> applied to people who cannot conceive of someone different being human

> (and it's been applied to me at times when I was *well* aware it was

> being said about me).

>

> As far as " If it weren't for... " it's kind of a dangerous proposition in

> itself. There is only one person I could say that about in my life, but

> even there I don't know. Something else could have happened, for all I

> know. It's impossible to know alternate timelines like that, and I tend

> against weighing the responsibility that heavily on one person,

> especially a person with an ego as big as Soma Mukhopadhyay's seems to

> be getting.

>

>

>

> --

> " Let us celebrate the spirit of non-compliance that is the self

> struggling to survive. Let us celebrate the unbowed head, the heart that

> still dreams, the voice that refuses to be silent. " -Judi Chamberlin

>

>

>

>

[Guest guest]

Whoever said we have no emotions or empathy is not from this planet - must

have been some sicko NT.

Colin.

RE: Re: " Tito " , the latest toy of CAN...

> At 04:47 AM 7/18/2003 -0700, you wrote:

>

> >Also a lot depends on awareness -- not communicating and not knowing one

> >*could* communicate, is not always a horrible thing from the inside.

> >

> >

>

> and not *wanting* to ........

> unlike Tito, the choice - whatever the method - has always been *'s*

> " horrible " is that lack of choice - there are far more than two it's true

> one should not be hit to do anything....

>

> got where he is because we followed HIS lead

> probably helps he had an Aspie mom

> a dad who probably meets HFA criteria

> and yes we are all different, we all have our own frames of reference

>

> is " verbal " but not " conversational "

> his articulation is poor

> I don't think he was *supposed* to talk

> I know how intelligent he is, how much he knows

> I can very easily imagine (and I thought I had no empathy!) " what it would

> be like to be intelligent, sensitive and so totally locked inside

ourselves. "

> will likely not be " saying " in 20 years

> the stuff he is typing today

>

> There is NO excuse for abuse

>

> -jypsy

>

>

>

>

> ________________________________

> Ooops....Wrong Planet! Syndrome

> Autism Spectrum Resources

> www.PlanetAutism.com

> jypsy@...

>

>

>

>

>

[Guest guest]

At 11:05 AM 7/18/2003, you wrote:

>Whoever said we have no emotions or empathy is not from this planet - must

>have been some sicko NT.

>

>Colin.

My own father, among others, used to level this accusation against me all

the time. And yes, he was indeed a sicko NT (he ultimately ended up

spending some months in a mental hospital, but that's a separate discussion).

With most NTs, though, their reasons for believing that are rather

simpler. Autistics tend to show their emotions and empathy in unusual ways

that NTs can't recognize, which is why autistics are often misdiagnosed as

sociopaths (i.e., people with no emotions). My partner, for example, might

show compassion for me by doing some cleaning around the house... I might

show compassion for her by emailing her photos of myself. NTs in general

don't " get " that kind of behavior, but we do.

--Parrish

[Guest guest]

On Fri, 2003-07-18 at 05:07, jypsy [ janet norman-bain ] wrote:

> is " verbal " but not " conversational "

> his articulation is poor

> I don't think he was *supposed* to talk

I suspect that this was true of me (that I am not supposed to talk), but

that it took my body a long time to finally say " Enough is enough, "

after talking had started. A friend at the time said, " You know, I

don't think you were ever cut out for speech. Some people aren't. "

That, at least, is one choice Tito was able to make. (He could have

gone on learning speech but decided against it based on what it was

doing to his mind, IIRC.)

> There is NO excuse for abuse

Agreed, strongly.

--

" People, it seems, communicate principally vocally, and their clacking

and chattering goes on interminably from morn till night and, believe it

or not, some of them even continue to talk in their sleep. " -Cica the

cat

[Guest guest]

> With most NTs, though, their reasons for believing that are rather

> simpler. Autistics tend to show their emotions and empathy in unusual ways

> that NTs can't recognize, which is why autistics are often misdiagnosed as

> sociopaths (i.e., people with no emotions). My partner, for example, might

> show compassion for me by doing some cleaning around the house... I might

> show compassion for her by emailing her photos of myself. NTs in general

> don't " get " that kind of behavior, but we do.

That and their preferred methods of showing emotion don't always show up

on us. Facial expressions and the like tend either to be muted or to

show up in different contexts altogether.

--

Air Force Inertia Axiom: Consistency is always easier to defend than

correctness.

[Guest guest]

I am the one who said it.

about myself

I have very little empathy

the fact that I found myself 'able to imagine' - empathize?

surprised me

-jypsy

At 08:05 AM 7/18/2003 -0700, you wrote:

>Whoever said we have no emotions or empathy is not from this planet - must

>have been some sicko NT.

>

>Colin.

> RE: Re: " Tito " , the latest toy of CAN...

>

>

> > At 04:47 AM 7/18/2003 -0700, you wrote:

> >

> > >Also a lot depends on awareness -- not communicating and not knowing one

> > >*could* communicate, is not always a horrible thing from the inside.

> > >

> > >

> >

> > and not *wanting* to ........

> > unlike Tito, the choice - whatever the method - has always been *'s*

> > " horrible " is that lack of choice - there are far more than two it's true

> > one should not be hit to do anything....

> >

> > got where he is because we followed HIS lead

> > probably helps he had an Aspie mom

> > a dad who probably meets HFA criteria

> > and yes we are all different, we all have our own frames of reference

> >

> > is " verbal " but not " conversational "

> > his articulation is poor

> > I don't think he was *supposed* to talk

> > I know how intelligent he is, how much he knows

> > I can very easily imagine (and I thought I had no empathy!) " what it would

> > be like to be intelligent, sensitive and so totally locked inside

>ourselves. "

> > will likely not be " saying " in 20 years

> > the stuff he is typing today

> >

> > There is NO excuse for abuse

> >

> > -jypsy

> >

> >

> >

> >

> > ________________________________

> > Ooops....Wrong Planet! Syndrome

> > Autism Spectrum Resources

> > www.PlanetAutism.com

> > jypsy@...

> >

> >

> >

> >

> >

[Guest guest]

Jypsy,

It is obvious to me and others on the spectrum (by inference from

discussions) that we have some difficulty in understanding emotions in

others. This does not mean that we do not feel or care about others or

cannot share pain or joy.

I think what it really means is that there is a difference in definition of

the word " empathy " depending whether you are on the spectrum or NT side of

the fence.

What I meant by my statement below is that we are *often* labelled as

unempathetic or unemotional. NTs seem to arrive at empathy from an

emotional pathway, whereas we seem arrive there on a logical one.

By the way, I love your web site. I am envious of where you live. It has

always been a dream of my wife's and mine to visit PEI. You have a

beautiful family. is fortunate to have such a supportive mother - a

hallmark of a " successful " person on the spectrum. Parents seem to know

what is best for their kids far more than any detached (unempathetic?)

professional.

Colin.

RE: Re: " Tito " , the latest toy of CAN...

> >

> >

> > > At 04:47 AM 7/18/2003 -0700, you wrote:

> > >

> > > >Also a lot depends on awareness -- not communicating and not knowing

one

> > > >*could* communicate, is not always a horrible thing from the inside.

> > > >

> > > >

> > >

> > > and not *wanting* to ........

> > > unlike Tito, the choice - whatever the method - has always been

*'s*

> > > " horrible " is that lack of choice - there are far more than two it's

true

> > > one should not be hit to do anything....

> > >

> > > got where he is because we followed HIS lead

> > > probably helps he had an Aspie mom

> > > a dad who probably meets HFA criteria

> > > and yes we are all different, we all have our own frames of reference

> > >

> > > is " verbal " but not " conversational "

> > > his articulation is poor

> > > I don't think he was *supposed* to talk

> > > I know how intelligent he is, how much he knows

> > > I can very easily imagine (and I thought I had no empathy!) " what it

would

> > > be like to be intelligent, sensitive and so totally locked inside

> >ourselves. "

> > > will likely not be " saying " in 20 years

> > > the stuff he is typing today

> > >

> > > There is NO excuse for abuse

> > >

> > > -jypsy

> > >

> > >

> > >

> > >

> > > ________________________________

> > > Ooops....Wrong Planet! Syndrome

> > > Autism Spectrum Resources

> > > www.PlanetAutism.com

> > > jypsy@...

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Colin Wessels wrote:

> What I meant by my statement below is that we are *often* labelled as

> unempathetic or unemotional. NTs seem to arrive at empathy from an

> emotional pathway, whereas we seem arrive there on a logical one.

That is true, but like so many other things, that is because there is an

impairment in the normal ability to use the emotional part of the brain

to interpret the cues and generate timely and relevant feelings. In

other words, the cognitive empathy is like many other things we do-- a

cognitively-intensive approximation of normal abilities.

I know I have difficulty empathizing. I have realized that I often see

only my own needs when I argue, and I have very little ability to even

realize that others have needs as well, or that theirs matter. In

general, others' needs do not matter to me on an emotive level; only if

I cognitively work out that they are people that have needs can I act as

if I am not the only person on the planet. If I am tired, overloaded,

sick, or otherwise not at full capacity, empathy is one of the first

things to go.

I also noticed that I have very little ability, even when I do use my

cognitive abilities, to see the side of any conflict that is more

dissimilar from my own life. If I can relate to something in one of the

two people in a fight of any kind, if I can somehow find a common ground

with one of the belligerents that relates to the conflict, I have

virtually no ability to empathize with the other person. I can see the

logical virtue (if it exists) in their argument, but I cannot put myself

into that other person's shoes.

[Guest guest]

I echo those sentiments.

I don't like the term disabled. We are a very able, capable bunch of

people. We may have *reduced capability* in some areas, but on the high

side, we may be " super-capable " relative to the NT standard.

Colin.

Re: Re: " Tito " , the latest toy of CAN...

> Colin Wessels wrote:

>

> > What I meant by my statement below is that we are *often* labelled as

> > unempathetic or unemotional. NTs seem to arrive at empathy from an

> > emotional pathway, whereas we seem arrive there on a logical one.

>

> That is true, but like so many other things, that is because there is an

> impairment in the normal ability to use the emotional part of the brain

> to interpret the cues and generate timely and relevant feelings. In

> other words, the cognitive empathy is like many other things we do-- a

> cognitively-intensive approximation of normal abilities.

>

> I know I have difficulty empathizing. I have realized that I often see

> only my own needs when I argue, and I have very little ability to even

> realize that others have needs as well, or that theirs matter. In

> general, others' needs do not matter to me on an emotive level; only if

> I cognitively work out that they are people that have needs can I act as

> if I am not the only person on the planet. If I am tired, overloaded,

> sick, or otherwise not at full capacity, empathy is one of the first

> things to go.

>

> I also noticed that I have very little ability, even when I do use my

> cognitive abilities, to see the side of any conflict that is more

> dissimilar from my own life. If I can relate to something in one of the

> two people in a fight of any kind, if I can somehow find a common ground

> with one of the belligerents that relates to the conflict, I have

> virtually no ability to empathize with the other person. I can see the

> logical virtue (if it exists) in their argument, but I cannot put myself

> into that other person's shoes.

>

>

>

>

>

>

[Guest guest]

> I echo those sentiments.

> I don't like the term disabled. We are a very able, capable bunch of

> people. We may have *reduced capability* in some areas, but on the high

> side, we may be " super-capable " relative to the NT standard.

There's nothing about the term disabled that implies inability to do

anything whatsoever, and I've never understood what's wrong with the

term.

Of course, there seem to be two main usages. One of which is a British

reconfiguration so that " impairment " is what in the US we'd call " our

disabilities " and " disability " is discrimination against people with

impairments. And then the other is the one that means inability to do

something that most people can do.

Neither usage bothers me. There's nothing about someone who can't walk

that means they necessarily can't talk, and that's called disabled (or

impaired). So why should we be any different? We have things we can't

do too, and there's nothing about " disabled " that means we can't do

*anything*. Not only that, but not being able to do something shouldn't

be a value judgement in the first place.

Discomfort with the word " disabled " often seems to me to stem from value

judgements about inability or difficulty in doing something (that it

makes you an inferior being overall or something). I don't have those

value judgements; the term doesn't bother me, in either its standard

American sense (in which it refers to an attribute of a person) or the

British-social-model sense (in which it refers to what's done when

society doesn't adequately take into account people with certain

attributes). Inability to do something isn't the end of the world, and

also doesn't say anything about other abilities.

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" Those who lie with statistics have strange bedfellows. " -Pierre Abbat