Re: Congressman Steve Rothman.

[Guest guest]

Our school newsletter advertised a meeting held yesterday in Edinburgh about

the Son-Rise programme, in which Barry Kaufman claimed his program can cure

autism. What he means is autistics can be valued members of society, not

they stop being themselves.

I wonder if a lobotomy would cure my disease?

Neil

PHAD People with High Functioning Autism: http://www.phad-fife.org.uk

Congressman Steve Rothman.

> Congressman Steve Rothman.

>

>

> Sir,

>

>

> It has come to my attention that you serve as an honorary board member for

> CURE AUTISM NOW. As an Aspie woman with 2 children on the Autism Spectrum

> I'd like to know what you have against our kind that you want us cured? I

> am offended. I realize that as a Canadian I cannot vote for you an so my

> opinion probably means little to you but your stance is showing the entire

> Autistic community that their opinion and their very lives mean VERY

little

> to you. Autism is not something we " have " , it's something we ARE. Perhaps

> you would like to show your support for some of the most vulnerable in

your

> community by resigning from CAN's board.

>

> -jypsy

>

> Thank you for emailing Congressman Steve Rothman. Your concern will be

> addressed and responded to promptly.

>

>

>

> ________________________________

> Ooops....Wrong Planet! Syndrome

> Autism Spectrum Resources

> www.PlanetAutism.com

> jypsy@...

>

>

>

>

>

[Guest guest]

At 10:27 AM 9/18/2003 +0100, you wrote:

>Our school newsletter advertised a meeting held yesterday in Edinburgh about

>the Son-Rise programme, in which Barry Kaufman claimed his program can cure

>autism. What he means is autistics can be valued members of society, not

>they stop being themselves.

>I wonder if a lobotomy would cure my disease?

>

>Neil

>

>PHAD People with High Functioning Autism: http://www.phad-fife.org.uk

say what?

" At 18 months, Raun was diagnosed as severely autistic. Although advised to

institutionalize Raun, his parents, authors/teachers Samahria and Barry

Neil Kaufman, created an innovative home-based, child-centered program in

an effort to reach their son. Their work, which developed into a unique

methodology now known as The Son-Rise Program, enabled Raun to recover

completely from his autism, transforming him from a mute, withdrawn child

with a tested I.Q. of less than 30 into an outgoing, social boy with a

near-genius I.Q. Raun's story was recounted by his father in the

best-selling book Son-Rise: The Miracle Continues and was the subject of an

award-winning NBC television movie Son-Rise: A Miracle of Love. "

-jypsy

> Congressman Steve Rothman.

>

>

> > Congressman Steve Rothman.

> >

> >

> > Sir,

> >

> >

> > It has come to my attention that you serve as an honorary board member for

> > CURE AUTISM NOW. As an Aspie woman with 2 children on the Autism Spectrum

> > I'd like to know what you have against our kind that you want us cured? I

> > am offended. I realize that as a Canadian I cannot vote for you an so my

> > opinion probably means little to you but your stance is showing the entire

> > Autistic community that their opinion and their very lives mean VERY

>little

> > to you. Autism is not something we " have " , it's something we ARE. Perhaps

> > you would like to show your support for some of the most vulnerable in

>your

> > community by resigning from CAN's board.

> >

> > -jypsy

> >

> > Thank you for emailing Congressman Steve Rothman. Your concern will be

> > addressed and responded to promptly.

> >

> >

> >

> > ________________________________

> > Ooops....Wrong Planet! Syndrome

> > Autism Spectrum Resources

> > www.PlanetAutism.com

> > jypsy@...

> >

> >

> >

> >

> >

[Guest guest]

> say what?

>

> " At 18 months, Raun was diagnosed as severely autistic. Although advised

to

> institutionalize Raun, his parents, authors/teachers Samahria and Barry

> Neil Kaufman, created an innovative home-based, child-centered program in

> an effort to reach their son. Their work, which developed into a unique

> methodology now known as The Son-Rise Program, enabled Raun to recover

> completely from his autism, transforming him from a mute, withdrawn child

To me " recover from his autism " means the same as " be cured of his autism " ,

yet Barry Neil Kaufman's Son has remained the same person. What has changed

is his outlook on life, the way he interacts with the rest of society and

his level of achievement. Severe withdrawal, muteness and depression are all

symptoms to which people on the spectrum are susceptible. The way we turn

out depends very much on our upbringing. If autism is a genetically

determined neurological difference, we shouldn't try to change it, but the

behavioural symptoms that people tend to associate with autism are just

that, symptoms that good old fashioned TLC can change.

In all likelihood there is no dramatic rise in the incidence of the

neurologically autistic, but rapid societal changes have led to a dramatic

rise in yougnsters with behavioural problems often associated with autistic

conditions. So presumably Mr Kaufman's son is still, by our definition,

autistic, but is now a high achiever.

Neil

[Guest guest]

At 11:25 AM 9/18/2003 +0100, you wrote:

> > say what?

> >

> > " At 18 months, Raun was diagnosed as severely autistic. Although advised

>to

> > institutionalize Raun, his parents, authors/teachers Samahria and Barry

> > Neil Kaufman, created an innovative home-based, child-centered program in

> > an effort to reach their son. Their work, which developed into a unique

> > methodology now known as The Son-Rise Program, enabled Raun to recover

> > completely from his autism, transforming him from a mute, withdrawn child

>

>To me " recover from his autism " means the same as " be cured of his autism " ,

to me as well

>yet Barry Neil Kaufman's Son has remained the same person.

that is not the story they are trying to sell... er I mean " tell "

>What has changed

>is his outlook on life, the way he interacts with the rest of society and

>his level of achievement.

>Severe withdrawal, muteness and depression are all

>symptoms to which people on the spectrum are susceptible. The way we turn

>out depends very much on our upbringing. If autism is a genetically

>determined neurological difference, we shouldn't try to change it, but the

>behavioural symptoms that people tend to associate with autism are just

>that, symptoms that good old fashioned TLC can change.

>In all likelihood there is no dramatic rise in the incidence of the

>neurologically autistic, but rapid societal changes have led to a dramatic

>rise in yougnsters with behavioural problems often associated with autistic

>conditions. So presumably Mr Kaufman's son is still, by our definition,

>autistic, but is now a high achiever.

>

>Neil

I have never like the Son Rise " in your face " invasive approach. I have

never liked their claims to have cured Raun.

However, I just read something that has given me a bit of hope for this

bunch ---

" The attitude of parents is the primary focus at the Options Institute ®.

" Parents are trying to address the practical side of life such as how do I

get my child to stop engaging in certain behaviors. We address the

emotional side, to help the parents reach a place of peace and acceptance

with their child. Autism isn't tragic. In our parenting course for typical

children, we tell our parents you don't owe your children anything other

than their basic needs. Anything else you do is a gift. This perspective

creates a different attitude with kids, one where the child is appreciative

for what their parents do for them. "

" Raun's global view of parenting is an uplifting one. " Parenting is about

letting go, releasing the need to control. Children aren't a reflection of

us as parents. Ultimately, children will make their own choices. Parents

get scared about what those choices will be, but they have no control over

that. "

Raun finds it fulfilling helping parents who are walking the same path as

his parents did. Raun sees his role in autism as one of teaching parents

and sending the message that there is hope; the children are not tragedies.

Raun raises money for parental choice - parents should choose how they want

to help their child and not have to follow what the state recommends. He

doesn't want them to make decisions for their child based on a financial

situation.

Raun Kaufman is a living example of what gifts parents can give to their

children when they go beyond meeting their basic needs. What a parent does

for any child, albeit special needs or typical, must come from the heart.

The parenting challenges presented to us should be tackled in a positive

way. The glass can be half empty or half full - it is all in how you look

at it. Do not think of parenting challenges in terms of sacrifice, but

rather in terms of building loving, lasting, connected relationships. "

I really didn't understand your initial reply Neil....

-jypsy

________________________________

Ooops....Wrong Planet! Syndrome

Autism Spectrum Resources

www.PlanetAutism.com

jypsy@...

[Guest guest]

>

> say what?

>

> " At 18 months, Raun was diagnosed as severely autistic. Although advised

to

> institutionalize Raun, his parents, authors/teachers Samahria and Barry

> Neil Kaufman, created an innovative home-based, child-centered program in

> an effort to reach their son. Their work, which developed into a unique

> methodology now known as The Son-Rise Program, enabled Raun to recover

> completely from his autism, transforming him from a mute, withdrawn child

> with a tested I.Q. of less than 30 into an outgoing, social boy with a

> near-genius I.Q. Raun's story was recounted by his father in the

> best-selling book Son-Rise: The Miracle Continues and was the subject of

an

> award-winning NBC television movie Son-Rise: A Miracle of Love. "

>

> -jypsy

Interesting how people equate becoming able to interact with the world on

NT-ish terms with being " cured " of autism. When my son was 3, he started to

disappear behind that autism wall. I already knew that he had sensory

integration dysfunction (that was our dx starting place), and with intensive

OT and me helping him to " learn " how to process sensory information he

became able to interact " normally " (for the most part) with the outside

world. I suppose that some people would consider him to be " cured. "

[Guest guest]

I have never like the Son Rise " in your face " invasive approach. I have

never liked their claims to have cured Raun.

However, I just read something that has given me a bit of hope for this

bunch ---

" The attitude of parents is the primary focus at the Options Institute ®.

" Parents are trying to address the practical side of life such as how do I

get my child to stop engaging in certain behaviors. We address the

emotional side, to help the parents reach a place of peace and acceptance

with their child. Autism isn't tragic. In our parenting course for typical

children, we tell our parents you don't owe your children anything other

than their basic needs. Anything else you do is a gift. This perspective

creates a different attitude with kids, one where the child is appreciative

for what their parents do for them. "

" Raun's global view of parenting is an uplifting one. " Parenting is about

letting go, releasing the need to control. Children aren't a reflection of

us as parents. Ultimately, children will make their own choices. Parents

get scared about what those choices will be, but they have no control over

that. "

Raun finds it fulfilling helping parents who are walking the same path as

his parents did. Raun sees his role in autism as one of teaching parents

and sending the message that there is hope; the children are not tragedies.

Raun raises money for parental choice - parents should choose how they want

to help their child and not have to follow what the state recommends. He

doesn't want them to make decisions for their child based on a financial

situation.

Raun Kaufman is a living example of what gifts parents can give to their

children when they go beyond meeting their basic needs. What a parent does

for any child, albeit special needs or typical, must come from the heart.

The parenting challenges presented to us should be tackled in a positive

way. The glass can be half empty or half full - it is all in how you look

at it. Do not think of parenting challenges in terms of sacrifice, but

rather in terms of building loving, lasting, connected relationships. "

I really didn't understand your initial reply Neil....

-jypsy

Basically, the approach used in the Son Rise program is the one I used with

my son...only without knowing about the existence of Son Rise. It just

seemed sensible to me. But then again, as an engineer, I have been

" trained " to know that you can't really do anything about a problem unless

you understand the problem.

[Guest guest]

At 08:34 AM 9/18/2003 -0400, you wrote:

>

>

>

>I have never like the Son Rise " in your face " invasive approach. I have

>never liked their claims to have cured Raun.

>However, I just read something that has given me a bit of hope for this

>bunch ---

>

> " The attitude of parents is the primary focus at the Options Institute ®.

> " Parents are trying to address the practical side of life such as how do I

>get my child to stop engaging in certain behaviors. We address the

>emotional side, to help the parents reach a place of peace and acceptance

>with their child. Autism isn't tragic. In our parenting course for typical

>children, we tell our parents you don't owe your children anything other

>than their basic needs. Anything else you do is a gift. This perspective

>creates a different attitude with kids, one where the child is appreciative

>for what their parents do for them. "

>

> " Raun's global view of parenting is an uplifting one. " Parenting is about

>letting go, releasing the need to control. Children aren't a reflection of

>us as parents. Ultimately, children will make their own choices. Parents

>get scared about what those choices will be, but they have no control over

>that. "

>

>Raun finds it fulfilling helping parents who are walking the same path as

>his parents did. Raun sees his role in autism as one of teaching parents

>and sending the message that there is hope; the children are not tragedies.

>Raun raises money for parental choice - parents should choose how they want

>to help their child and not have to follow what the state recommends. He

>doesn't want them to make decisions for their child based on a financial

>situation.

>

>Raun Kaufman is a living example of what gifts parents can give to their

>children when they go beyond meeting their basic needs. What a parent does

>for any child, albeit special needs or typical, must come from the heart.

>The parenting challenges presented to us should be tackled in a positive

>way. The glass can be half empty or half full - it is all in how you look

>at it. Do not think of parenting challenges in terms of sacrifice, but

>rather in terms of building loving, lasting, connected relationships. "

>

>I really didn't understand your initial reply Neil....

>

>-jypsy

>

>

>Basically, the approach used in the Son Rise program is the one I used with

>my son...only without knowing about the existence of Son Rise. It just

>seemed sensible to me. But then again, as an engineer, I have been

> " trained " to know that you can't really do anything about a problem unless

>you understand the problem.

>

>

I refused to " force " and that included (includes) getting in his face.

For that reason I rejected ABA (well there were other reasons there) and

other " intensive therapies " .

I will not treat another person, my children included, in a way that I

myself would not want to be treated. The LAST thing I want is someone in my

face, trying to get in my head, locking themselves in a room with me,

making me sit across a table from them, etc etc.

I never had " peace & acceptance " issues. I never had " control " issues. I'm

a hopeless optimist.

Following 's lead didn't involve being in his face or taking away his

childhood though (or joining in a stim party).

Above all it is most important to me that my children are HAPPY, that is as

true for as it is for . Like every relationship I have, the

relationships I have with my kids is built on mutual respect and I really

enjoy them.

-jypsy

________________________________

Ooops....Wrong Planet! Syndrome

Autism Spectrum Resources

www.PlanetAutism.com

jypsy@...

[Guest guest]

Neil wrote:

>In all likelihood there is no dramatic rise in the incidence of the

>neurologically autistic, but rapid societal changes have led to a dramatic

>rise in yougnsters with behavioural problems often associated with autistic

>conditions. So presumably Mr Kaufman's son is still, by our definition,

>autistic, but is now a high achiever.

Some changes I've noticed: Kids don't get to be alone as much

these days. I spent much of my childhood alone, either at home

(when my two older sisters were otherwise engaged) or out in

the world, exploring (finding places that interested me and

where I could be alone). I get the impression that it's

considered too dangerous to let kids wander on their own these

days.

And yesterday I heard part of a local (public) radio program

where the subject was a proposed major overhaul of the public

high school curriculum. One change: all students must

demonstrate their ability to work in teams (just like college

students had been required to do for the last 5-10 years).

I didn't go to kindergarten. These days, most kids (it seems)

are in " play school " or " pre school " from a very early age.

I think I would have a lot more " behavior problems " (and I'd

be a lot less happy) if I were five now instead of in 1955.

Jane

[Guest guest]

That is so true. I loved wandering in the woods alone and finding

cool stuff. I can't let my kids wander around, but they can have

free run of the five-acre backyard (I can see them from the

kitchen window).

My in-laws hate it when we go to their house and my children each

take themselves to a corner of the yard and play alone, instead

of engaging in basketball with the cousins.

I had a hard time with " teams " in college. I usually ended up

running the team and doing most, if not all, of the work so I

could get it done and over with.

Louis

From: Jane Meyerding

Some changes I've noticed: Kids don't get to be alone as much

these days. I spent much of my childhood alone, either at home

(when my two older sisters were otherwise engaged) or out in

the world, exploring (finding places that interested me and

where I could be alone). I get the impression that it's

considered too dangerous to let kids wander on their own these

days.

And yesterday I heard part of a local (public) radio program

where the subject was a proposed major overhaul of the public

high school curriculum. One change: all students must

demonstrate their ability to work in teams (just like college

students had been required to do for the last 5-10 years).

Jane

[Guest guest]

Jane typed:

>

> Some changes I've noticed: Kids don't get to be alone as much

> these days. I spent much of my childhood alone, either at home

> (when my two older sisters were otherwise engaged) or out in

> the world, exploring (finding places that interested me and

> where I could be alone). I get the impression that it's

> considered too dangerous to let kids wander on their own these

> days.

My childhood had two halves. In a bungalow on the windswept Isle of Anglesey

(aka Ynys Mon) off the northwest coast of Wales, within easy walking

distance of broad sandy beaches, undisturbed by tourists for most of the

year. The boating fraternity would frequent the nearby port of Rhosnaigr in

summer, but the only noise that purturbed me was the occasional roar from

the nearby RAF base where my father worked.

The second half was in Luton, for all intents and purposes, a satellite town

of London. It was there that bullying started. Although my mum still lives

thirteen miles away from the scene of my teenage torture, I have only been

back on rare occasions. Many of the social trends that have made Britain an

unhappy place for those of us on the spectrum started in places like Luton.

First less than half of my classmates were born in the town, which had grown

dramatically since the end of WW2. In many ways the setting was more

American than English, a magnet for migrants from other parts of the UK and

newcomers from the former Great British Empire. Pop idols, premier league

football (soccer in the US) teams and TV celebs replaced traditional

folklore. Your status depended on co-opting a manufactured identity. Even I

fantasized about being a punk. Sadly this trend has spread far and wide

since. Now success depends above all else on image, presentation and deceit.

One learns to deny at a very early age.

But my analysis is coloured by my nonconformist political outlook. As I age

I become more conservative with a small c, but more revolutionary with a big

R, more disgusted with the utter mendacity of our ruling elite. Today it is

the status quo that's wrecklessly destroying our society and the growing

visibility of autistic behaviour is just one symptom of a greater malaise.

In a nutshell my thesis is that high-functioning autistics have not changed,

but mainstream society has and we find it harder than most to cope.This may

seem odd because many aspies are obsessed with the cultural phenomena which

I would blame for this rise in autism visibility. Many aspies end up glued

to TV screens and video-game consoles, eating junk food, addicted to

antidepressants and consuming the wares of a decadent society. It is thuis

society that has failed us, belatedly recognising that we have a quaint

disability that stops us from acting cool.

> And yesterday I heard part of a local (public) radio program

> where the subject was a proposed major overhaul of the public

> high school curriculum. One change: all students must

> demonstrate their ability to work in teams (just like college

> students had been required to do for the last 5-10 years).

The great buzzwords are team work, team-player, eye-contact, self-esteem,

confidence and presesentation. If you excel in these areas, you're

guaranteed a job for life and they'll send you on all the courses you need

to acquire any other skills needed in today's artificial labour market.

What's missing is inititaive and creativity. By teamwork, they mean

instinctively guessing who's at the top of the pecking order, knowing when

to agree and when to state one's own opinion.Actually the new art is

self-deceipt, learning to change not just one's opinion, but to

wholeheartedly mebrace the philosophy of one's bosses.

> I didn't go to kindergarten. These days, most kids (it seems)

> are in " play school " or " pre school " from a very early age.

That's because both parents need to work in an absurd rat race. Didn't use

to be like that. So much for women's lib, I don't know working in a call

centre or out-of-town supermarket liberates the gentler sex.

> I think I would have a lot more " behavior problems " (and I'd

> be a lot less happy) if I were five now instead of in 1955.

Sticking labels on people often only exacerbates problems. Treat people as

individuals and they may respond positively, treat them as weirdoes with a

neurological disorder most teachers fail to understand, and they fall victim

to implicit or " politically correct " bullying justified by a culture that

stakes everything on conformity to a technicolor brave new world.

Neil

[Guest guest]

>Basically, the approach used in the Son Rise program is the one I used with

>my son...only without knowing about the existence of Son Rise. It just

>seemed sensible to me. But then again, as an engineer, I have been

> " trained " to know that you can't really do anything about a problem unless

>you understand the problem.

>

>

I refused to " force " and that included (includes) getting in his face.

For that reason I rejected ABA (well there were other reasons there) and

other " intensive therapies " .

I will not treat another person, my children included, in a way that I

myself would not want to be treated. The LAST thing I want is someone in my

face, trying to get in my head, locking themselves in a room with me,

making me sit across a table from them, etc etc.

I never had " peace & acceptance " issues. I never had " control " issues. I'm

a hopeless optimist.

Following 's lead didn't involve being in his face or taking away his

childhood though (or joining in a stim party).

Above all it is most important to me that my children are HAPPY, that is as

true for as it is for . Like every relationship I have, the

relationships I have with my kids is built on mutual respect and I really

enjoy them.

-jypsy

I don't think I ever got in 's face...except for the times when he

was having trouble processing lots of visual input, and he needed to " reset "

his field of vision. Getting him to look at my face and only my face would

usually help with that. And when there's too much sound, his ability to

process sounds disappears, but getting him to close his eyes and listen to

me whispering very quietly to him (because he can't process anything louder

than a whisper at those times) can help " reset " his ability to process

sounds.

I never really joined him in stimming because his biggest stim was chewing

on things. But I did engage in parallel play with him well past the age

when " normal " kids would be playing interactively.

I am not a fan of ABA, but I do think that it makes sense to enter your

autistic child's world instead of trying to drag him into your. I didn't

always expect to be acknowledged when we parallel played, but sometimes I

was. I didn't force the issue. Whenever wanted to join my world

I'd let him.

I've always believed that children deserve to be respected, not intimidated.

When I talk to kids, I get down on their level or bring them up to mine. I

don't yell at kids...unless it's an issue of being heard over a bunch of

noise or across a distance. My relationships with my kids are definitely

built on mutual respect.

[Guest guest]

We're really lucky to live in a neighborhood that's kind of a 50's

throwback. Only a couple of the mothers work outside the home so the kids

aren't all in day care. Our street is a cul-de-sac, and there are currently

only 16 houses in the neighborhood. To the west (behind our house) is a

steep little wooded valley. There are lots of kids in the neighborhood (7

boys between 5 and 7, 3 boys between 8 and 12, 2 five-year-old girls, 2

three-year-olds, 3 two-year-olds, and 4 babies).

The kids run around in packs of mixed ages and genders. We parents don't

feel the need to have the kids in sight all the time. They play in the

woods, they catch stuff in the creek, they play in the mud, they ride their

bikes...they do all kinds of kids stuff. Sure, sometimes it

backfires...like last winter when a bunch of the boys decided to sled down

the " forbidden hill " (a steep, twisty access road that goes down into the

woods which none of the kids are coordinated enough to navigate on sleds

yet), and one of my kids crashed into a tree and lacerated a kidney, or when

they poke around in the woods and find a yellow jacket nest or a big patch

of poison ivy, but they are learning about those things the way I did...by

experiencing them.

The parents are all Mr. and Mrs., and we all expect polite behavior and no

tattling. We have taught our kids that bullying is not acceptable behavior

at all, and so far the kids have done a good job of enforcing that amongst

themselves. When any of the kids misbehave, whichever parent is around will

take care of it. We all joked this past summer that with all the little

half-naked boys running around it was like Lord of the Flies.

RE: Congressman Steve Rothman.

> That is so true. I loved wandering in the woods alone and finding

> cool stuff. I can't let my kids wander around, but they can have

> free run of the five-acre backyard (I can see them from the

> kitchen window).

>

> My in-laws hate it when we go to their house and my children each

> take themselves to a corner of the yard and play alone, instead

> of engaging in basketball with the cousins.

>

> I had a hard time with " teams " in college. I usually ended up

> running the team and doing most, if not all, of the work so I

> could get it done and over with.

>

> Louis

> From: Jane Meyerding

> Some changes I've noticed: Kids don't get to be alone as much

> these days. I spent much of my childhood alone, either at home

> (when my two older sisters were otherwise engaged) or out in

> the world, exploring (finding places that interested me and

> where I could be alone). I get the impression that it's

> considered too dangerous to let kids wander on their own these

> days.

>

> And yesterday I heard part of a local (public) radio program

> where the subject was a proposed major overhaul of the public

> high school curriculum. One change: all students must

> demonstrate their ability to work in teams (just like college

> students had been required to do for the last 5-10 years).

>

> Jane

>

>

>

>