Re: Slow-Motion Miracle: One Boy's Journey Out of Autism's Grasp

December 29, 2004

This seems to be a story written by the father - maybe they don't

know about chelation and biomedical intervention. Or maybe they do,

and have chosen not to try it. Is your point that the NYT shouldn't

publish stories about autism that don't mention alternative

treatments?

We're doing just about everything with our son BUT ABA. He's made

some improvements, but I really don't know if they are due to the

interventions or the natural course of his autism. I'm really

wondering lately if we're missing by the boat by not also doing ABA

or VB.

> {Words like Chelation, Autism Research Institute, and supplements

do not

> appear in this article. The NYT's one-sided, propagandistic

approach to

> pseudo-journalism continues. -}

>

> Slow-Motion Miracle: One Boy's Journey Out of Autism's Grasp

> By JOHN O'NEIL

> http://www.nytimes.com/2004/12/29/education/29autism.html

>

> O'Neil/The New York Times

>

> {caption} when he was 2 years old. A bubbling child, he grew

> increasingly withdrawn, repeating meaningless phrases, lying on the

> floor squinting or crying at loud noises.

>

> ix years ago, my son fell down a well, and he's still

climbing out.

>

> has autism. He is one of 150,000 or more American children

> classified in the last decade as having the once-rare disorder,

> including 25,000 in 2003. Half a century ago, polio epidemics left

> perhaps 5,000 children a year with some degree of disability, and

the

> sight of children stricken overnight galvanized the nation. But

autism's

> arrival, and the response to it, has not been so dramatic.

>

> In 's case, a bubbling 2-year-old who loved " mashed totatoes "

and

> sword-fighting faded away. In his place was a nearly silent,

unhappy

> child who repeated meaningless phrases, lay on the floor squinting

or

> pulled cowboy boots on and off until his feet were raw. Every day

he

> fell a little further out of the world.

>

> But one recent afternoon sat at our kitchen table with his

best

> friend, Larry, goofing off instead of doing homework. They made

dumb

> jokes and gossiped about their " girlfriends " at their school, just

up

> the street.

>

> It's hard for me to explain how many dreams-come-true are reflected

in

> that one sentence.

>

> 's journey is by no means over. He still has significant

problems

> with reading comprehension, math, attention and social skills. He

gets

> stuck on favorite subjects - though this year, the Yankees,

thankfully,

> replaced the War of 1812. He can sound as if he is speaking a

second

> language, with the halts and mangling of idioms that implies. With

his

> peers, he hovers at the border of acceptance.

>

> But even that list of problems is a sign of how far he has come.

Six

> years ago, he couldn't engage with the world around him.

>

> Scientists know little about autism. What they have learned has

> underscored the complexity of its genetics and anatomical

abnormalities,

> which begin developing soon after conception. They do know a lot,

> however, about what to do about autism, enough that a federal panel

has

> set a 10-year target of preventing 25 percent of new cases. The

panel's

> plan faces huge obstacles, starting with an absence of additional

funds

> to carry it out. But the hardest part, panel members said, is

making use

> of what we already can do.

>

> In that sense, 's progress has a sadder side: that he has been

such

> an exception. Not everybody who gets the treatment he did

progresses so

> far, although some go further. But only a relative handful of

children

> with autism are thought to receive even the minimum standard of

care, a

> pattern reflected in an increase in requests for institutional

> placements as the leading edge of last decade's cases reaches

adolescence.

>

> The other key to improved outcomes is early detection. Most cases

are

> caught much later than they could have been, and in that sense

was

> no exception. Had we any idea what to look for, we could have known

in

> 's first year of life, I think.

>

> was an easy baby. But looking back, part of the easiness was

a

> lack of intensity in his connection to us. There was some

difficulty in

> meeting our gaze, and a lack of curiosity about things pointed out

to

> him - both hallmarks of autism, and red flags on formal

developmental

> screenings. never got one, perhaps because his sunny

disposition

> obscured such flaws, and because we were never worried enough to

raise

> any concerns with his pediatrician.

>

> When he was 2½, we moved to northern New Jersey six weeks after our

> youngest son, Miles, was born. When 's behavior started to

become a

> bit odd, we just figured he was overwhelmed.

>

> It took a third party to force us to focus on him. The director of

> 's new preschool took my wife, Marcia, aside one day. " He just

> seems a little off to me, " Maureen, the director, said. " Sometimes

he

> seems not to hear me. "

>

> We know now that she was worried about more than his hearing. In

the

> first of many strokes of luck, she was familiar with autism, having

> taught in a local specialty school. She suggested that we contact

the

> local school district for an evaluation. was fine, I thought,

but

> why not?

>

> As the evaluation process wound on toward his third birthday and

's

> behavior became more difficult, it became clear that he was not

fine.

> When Maureen called Marcia into her office again, to give a name to

our

> fears - " I think is a little bit autistic " - it made all too

much

> sense.

>

> Good News, Bad News

>

> A library grew on our bedside table, bearing a message that seemed

a

> sort of good news, bad news joke. The bad news: autism has no cure.

The

> good news: there can be effective treatment. The bad news: it's

> incredibly expensive, difficult and time-consuming - and nobody

wants

> your child to have it.

>

> So we were pleasantly surprised when we sat down with the school's

team

> and learned the district had recently begun a preschool autism

program

> using the treatment the books recommended, applied behavioral

analysis,

> or A.B.A.

>

> We had some questions. For one thing, he would be getting 10 hours

of

> one-on-one therapy a week, instead of the 30 to 40 hours a week

called

> for. We were told that quality was what counted, not quantity. We

also

> knew we had few options.

>

> On the way home, Marcia, a physician, seethed. " Do you think I

prescribe

> half the appropriate dose of antibiotics? " she demanded. But

> needed help, and the clock was ticking.

>

> To get more help, Marcia took him to a private speech

therapist.

> She learned something about A.B.A. that day, but also about how

little

> we knew about what was going on inside his head. She learned, for

> instance, that had forgotten his name.

>

> " What's your name? " asked the therapist, Kathy Rooney.

>

> Silence.

>

> " What's your NAA-aaame, " she chanted in a singsong. " JAMES o-NEEE-

il. "

>

> After a few more times, she repeated the question. After a pause,

he

> answered, and Kathy showered him with praise.

>

> The " analysis " in A.B.A. means figuring out what a child needs to

learn,

> the best way to teach it - and whether it's actually learned. The

> behavioral part means rewarding desired behavior.

>

> In some ways, that sounded like a more rigorous version of ordinary

> parental tasks, and Marcia began to introduce bits of it, like

giving

> milk only when he said " milk " instead of just pointing. I was

> taking him to the pool a lot, mostly to wear him out, since he had

> trouble sleeping. loved to jump in, and I tried taking

advantage

> of that desire to perform what I'd later learn was " discrete trial

> instruction. " I held up one finger and said, " How many? One! " If

> said " one, " splash! By the end of the week, he was up to three,

unprompted.

>

> We began to discover that is, for a child with his problems,

a

> quick learner when taught in the right way. And not everything had

been

> lost. Shown a hard yellow plastic hat, he answered, slowly but

surely,

> " con-struc-tion hel-met. "

>

> But as Marcia began to learn more, her enthusiasm about the happy

notes

> coming home with began to dim. His teachers seemed to have a

hard

> time motivating him. Most important, he just didn't seem to be

learning

> much.

>

> We contacted the parents of the other children in the program, and

found

> they were also concerned. Together, we went to the district's

special

> education director, asking her to let an outside expert make

> suggestions. But as the director talked about the many costs the

> districts was facing, the tears trickling down one mother's cheeks

dried

> up. We all got the message: They may be your children, but this is

our

> program.

>

> Home Program, Tiny Steps

>

> That's how we came to find ourselves sitting in our basement on a

> stifling July day with strangers who were about to become the most

> important people in our lives.

>

> When Marcia had first read about " home programs, " her reaction had

been

> succinct: " Not for us! " Creating a school for one from scratch

seemed

> insane, even without the lawsuit it would obviously require.

>

> But she had given up her full-time position and done it. Our

greatest

> stroke of luck was finding someone to get us started: Hampel

of the

> Rutgers Autism Program, whom we had contacted when we thought the

> district might like an expert's help.

>

> He had high hopes, which he expressed in an unsettling way. "

is

> the kind of kid who is the scariest to work with, " he

said, " because you

> never know if you're going fast enough to keep up with his

potential. "

>

> What followed was an isolating time for , at a little table

for up

> to eight hours a day, doing work most children would find tedious

in the

> extreme. Skills normally acquired in a blended rush were introduced

in

> the tiniest of steps. An instructor would place two blocks side by

side,

> one flat, one vertical, say " Do this, " and hand them to . Or

touch

> her nose - " do this " - then her cheek, eyes, brow.

>

> But after a few tantrums it became clear that liked to work.

Not

> just for the hugs and shiny stickers. He liked being connected. And

it

> was only under this kind of bare, intense focus that he could

connect.

>

> Data is the lifeblood of A.B.A.; it is the only way to spot your

> mistakes. But along with charts of 's trial-by-trial

performance,

> his instructors kept a log of " spontaneous language. " On the

program's

> first day there is only one entry: " I want cheese crackers. " In

August,

> that starts to creep up, to a half a dozen or so. In late September

> there is an explosion: " I want a big tickle. " " I want the Play-

Doh. "

> Another one also jumps out: " Where is ? "

>

> A 4-year-old whose family had just arrived from Poland,

came

> with her mother several times a week to visit our neighbor. She

knew no

> English and had nothing to do - except try to get to play.

Such a

> determined child! was used to a language barrier and was

> tireless in her efforts to get into a game, even as simple a

one

> as rolling toy cars down the steps. " Jems. Jems! JEMS!!!! "

>

> And it worked. For brief snatches could play along.

could play!

>

> What was new wasn't just , of course. was waking up,

> thanks to his work at the table. New skills were creating a new

interest

> in the world - which were making other new skills possible.

>

> Now we tried to use our time to extend his learning. I enlisted his

> brothers, Miles and to teach simple play scripts, like

saying,

> " Tickets, please! " when the chairs were lined up to make a train.

We

> worked on the countdown for a rocket ride. extended the

script:

> " To the moon! To the stars! AAAAAHHHH!!! WE CRASHED!!! "

>

> But every so often there was a fresh bucket of cold water to remind

us

> of how far he had to go - and that time was passing. Like this

blunt

> assessment from a speech pathologist when he turned 4: " Unless his

> language really picks up, he's not going to make it. "

>

> Making it meant placement in a mainstream kindergarten - a crucial

> sorting point. We went home scared, and Marcia made changes.

>

> For six weeks, the instructors focused almost entirely on getting

> to talk, a lot. One technique was simple. Usually got treats

as a

> reward for doing well at his programs. For now, all he needed to

get

> them was simply to ask for them.

>

> And it worked. The data the instructors took on requests per hour

crept

> up and up, but in truth we didn't need it. He wouldn't shut up. The

> intensive effort had jump-started some slumbering connection in the

> brain. And over months we began to see flashes of a new kind of

language

> - talking that goes back and forth, that changes with each thing

that is

> said.

>

> Then this, from the logbook for April 7, 2000:

>

> Jeanette: I like to eat chicken.

> : I like to eat breakfast.

> Jeanette: I like waffles for breakfast.

> : I like cereal for breakfast.

> A conversation.

>

> On the Road to Real School

>

> Also that spring, returned to the district preschool program

we

> had withdrawn him from the year before. He hadn't been ready for it

> then; now he was. And so were we: we had reached a settlement in

the

> lawsuit we had filed charging that the district had failed to

provide

> him with an education appropriate to his needs.

>

> That yearlong migraine had drained us of time, emotion and money at

a

> time when we had little enough to spare. But we also felt that if

we let

> the district pound on our child without hitting back, the pounding

would

> never stop. In the end, the court sided with the first family to go

to

> trial in our district. The creation of district-run autism programs

> clearly needs to be encouraged, the judge wrote, " but it cannot be

at

> the expense of a little boy. "

>

> For the next year we were on the on-ramp to real school in a blur

of

> preparation. But kindergarten turned out to be an anticlimax. He

was

> accompanied by one of his home instructors, acting as a " shadow, "

and

> yes, things went well, and yes, his problems there were the same

ones he

> had at home, like staying on task and following directions.

>

> What was big in kindergarten was something we hadn't prepared for:

Larry.

>

> Sometime during preschool, children had stopped being ghosts for

.

> But we gradually realized what was developing here was a

friendship -

> the hardest thing for a person with autism at any age.

>

> Larry Pan is enthusiasm with a crew cut. What attracted Larry to

?

> Perhaps it was 's sense of humor (think diaper jokes). Or

maybe

> they just were drawn to each others' big hearts.

>

> After our rocky start with our district, elementary school has been

> remarkably smooth. There was one dreadful time in first grade when

> suddenly began hitting his aide, raising the prospect that perhaps

he

> could not continue where he was.

>

> The solution turned out to be simple. A swap of aides was arranged,

and

> Jeanette, who had known since was 3, came in as a backup

shadow.

> She gave him a look and the nonsense stopped. But Marcia and I felt

as

> if we had been swept back to the cliff's edge. When a child falls

out of

> the mainstream, it is hard to return. Unable to sleep, I wondered

if

> this was what post-traumatic stress disorder felt like.

>

> Knowing He Is Different

>

> Nothing like that has happened again. There are still plenty of

problems

> - his progress, in some ways, consists of moving up to a better

class of

> problems. At camp this summer, didn't know how to handle a

boy who

> was mean; in years past he wouldn't have recognized the hostility.

> used to be unnaturally compliant: now his favorite song

begins, " You're

> not the boss of me now... "

>

> And then there's the most painful progress of all: right now

is

> wrestling with the knowledge that he has autism.

>

> Over the last year, it has become slowly apparent to that he

is

> different from other children, or at least he is thinking about it.

He

> recently asked Miles, who is now in first grade, why Miles doesn't

go to

> a resource room.

>

> But why tell him?

>

> Giving him a name for the difference he is beginning to grasp means

> letting him begin coping with the issues that will remain after his

> intervention fades away. It's strange to be thinking of the path to

> adulthood for a fan of " Ed, Edd n Eddy, " the silliest cartoon on

TV. But

> that's where this road leads.

>

> In my glummer moments, I think about as a boy who fell off a

train

> and is running to get back on. Time and again he reaches it - but

the

> train, too, is accelerating. Will the running never end?

>

> We used a more upbeat image to tell where he is now: he had

> rounded third and was getting ready to slide home.

>

> Still, raged and cried and insisted that he didn't have

autism,

> that other children he knew did.

>

> But he also had a lot of good questions. He knows that Larry gets

> tutoring in reading. Why doesn't that mean that he has autism?

and

> I had looked at an article about a kindergartner with cerebral

palsy.

> Could that boy get better? Which was worse?

>

> And he kept on thinking. Earlier this month, at the end of a day

spent

> on a research study, he was offered a T-shirt with a picture of a

brain.

> He angrily refused it. " I don't want to wear that to school, " he

said.

> " Nobody else in my class has autism. "

>

> In the car, he wept, asking " Why doesn't anybody else have autism? "

The

> next night, during a sleepover, he told Larry about the incident -

about

> how his brain was different, about how he used to have big

problems.

> What did Larry say? I asked . " That the only thing I know

about is

> peanut butter! " he said, and laughed.

>

> He had taken a chance and learned a lesson: Larry cares about him,

not

> his label.

>

> It made me realize: from now on who turns out to be is going

to be

> shaped more by him than by the work being done for him. will

be

> his own intervention.

>

> O'Neil is deputy editor of special sections at The Times.

>

> *

>

> The material in this post is distributed without profit to those

> who have expressed a prior interest in receiving the included

> information for research and educational purposes.

> For more information go to:

> http://www4.law.cornell.edu/uscode/17/107.html

> <http://oregon.uoregon.edu/%7Ecsundt/documents.htm>

> http://oregon.uoregon.edu/~csundt/documents.htm

> <http://oregon.uoregon.edu/%7Ecsundt/documents.htm>

> If you wish to use copyrighted material from this email for

> purposes that go beyond 'fair use', you must obtain permission

> from the copyright owner.

>

December 29, 2004

It has been my understanding all along that for the really sick kids, they need

all types of interventions, working together to help the kids to get well,

including the occupational therapy (ABA, or what ever other type). You should

include some type of occupational therapy along with the supps.

And I have to add, our son is cured now, due souly to biomedical intervention.

I know he is in a smaller crowd, but I also know that we witnessed dramatic,

overnight changes with certain things we incorporated into his supps.

Other things were slow and steady in how they helped him and are still helping

him.

Hang in there, it is a long road, but you always have to remember that you are

your child's only hope.

No one will come and knock on your door and tell you what to do to get him well.

Include the occupational therapy with the other things you are doing. It does

help. And don't stop the supps. Their bodies are so deficient in so many things.

Sincerely,

-- Original Message -----

To: csb-autism-rx <mailto:csb-autism-rx >

Sent: Wednesday, December 29, 2004 9:25 AM

Subject: Re: Slow-Motion Miracle: One Boy's Journey Out of

Autism's Grasp

This seems to be a story written by the father - maybe they don't

know about chelation and biomedical intervention. Or maybe they do,

and have chosen not to try it. Is your point that the NYT shouldn't

publish stories about autism that don't mention alternative

treatments?

We're doing just about everything with our son BUT ABA. He's made

some improvements, but I really don't know if they are due to the

interventions or the natural course of his autism. I'm really

wondering lately if we're missing by the boat by not also doing ABA

or VB.

> {Words like Chelation, Autism Research Institute, and supplements

do not

> appear in this article. The NYT's one-sided, propagandistic

approach to

> pseudo-journalism continues. -}

>

> Slow-Motion Miracle: One Boy's Journey Out of Autism's Grasp

> By JOHN O'NEIL

>

http://www.nytimes.com/2004/12/29/education/29autism.html<http://www.nytimes.com\

/2004/12/29/education/29autism.html>

>

> O'Neil/The New York Times

>

> {caption} when he was 2 years old. A bubbling child, he grew

> increasingly withdrawn, repeating meaningless phrases, lying on the

> floor squinting or crying at loud noises.

>

> ix years ago, my son fell down a well, and he's still

climbing out.

>

> has autism. He is one of 150,000 or more American children

> classified in the last decade as having the once-rare disorder,

> including 25,000 in 2003. Half a century ago, polio epidemics left

> perhaps 5,000 children a year with some degree of disability, and

the

> sight of children stricken overnight galvanized the nation. But

autism's

> arrival, and the response to it, has not been so dramatic.

>

> In 's case, a bubbling 2-year-old who loved " mashed totatoes "

and

> sword-fighting faded away. In his place was a nearly silent,

unhappy

> child who repeated meaningless phrases, lay on the floor squinting

or

> pulled cowboy boots on and off until his feet were raw. Every day

he

> fell a little further out of the world.

>

> But one recent afternoon sat at our kitchen table with his

best

> friend, Larry, goofing off instead of doing homework. They made

dumb

> jokes and gossiped about their " girlfriends " at their school, just

up

> the street.

>

> It's hard for me to explain how many dreams-come-true are reflected

in

> that one sentence.

>

> 's journey is by no means over. He still has significant

problems

> with reading comprehension, math, attention and social skills. He

gets

> stuck on favorite subjects - though this year, the Yankees,

thankfully,

> replaced the War of 1812. He can sound as if he is speaking a

second

> language, with the halts and mangling of idioms that implies. With

his

> peers, he hovers at the border of acceptance.

>

> But even that list of problems is a sign of how far he has come.

Six

> years ago, he couldn't engage with the world around him.

>

> Scientists know little about autism. What they have learned has

> underscored the complexity of its genetics and anatomical

abnormalities,

> which begin developing soon after conception. They do know a lot,

> however, about what to do about autism, enough that a federal panel

has

> set a 10-year target of preventing 25 percent of new cases. The

panel's

> plan faces huge obstacles, starting with an absence of additional

funds

> to carry it out. But the hardest part, panel members said, is

making use

> of what we already can do.

>

> In that sense, 's progress has a sadder side: that he has been

such

> an exception. Not everybody who gets the treatment he did

progresses so

> far, although some go further. But only a relative handful of

children

> with autism are thought to receive even the minimum standard of

care, a

> pattern reflected in an increase in requests for institutional

> placements as the leading edge of last decade's cases reaches

adolescence.

>

> The other key to improved outcomes is early detection. Most cases

are

> caught much later than they could have been, and in that sense

was

> no exception. Had we any idea what to look for, we could have known

in

> 's first year of life, I think.

>

> was an easy baby. But looking back, part of the easiness was

a

> lack of intensity in his connection to us. There was some

difficulty in

> meeting our gaze, and a lack of curiosity about things pointed out

to

> him - both hallmarks of autism, and red flags on formal

developmental

> screenings. never got one, perhaps because his sunny

disposition

> obscured such flaws, and because we were never worried enough to

raise

> any concerns with his pediatrician.

>

> When he was 2½, we moved to northern New Jersey six weeks after our

> youngest son, Miles, was born. When 's behavior started to

become a

> bit odd, we just figured he was overwhelmed.

>

> It took a third party to force us to focus on him. The director of

> 's new preschool took my wife, Marcia, aside one day. " He just

> seems a little off to me, " Maureen, the director, said. " Sometimes

he

> seems not to hear me. "

>

> We know now that she was worried about more than his hearing. In

the

> first of many strokes of luck, she was familiar with autism, having

> taught in a local specialty school. She suggested that we contact

the

> local school district for an evaluation. was fine, I thought,

but

> why not?

>

> As the evaluation process wound on toward his third birthday and

's

> behavior became more difficult, it became clear that he was not

fine.

> When Maureen called Marcia into her office again, to give a name to

our

> fears - " I think is a little bit autistic " - it made all too

much

> sense.

>

> Good News, Bad News

>

> A library grew on our bedside table, bearing a message that seemed

a

> sort of good news, bad news joke. The bad news: autism has no cure.

The

> good news: there can be effective treatment. The bad news: it's

> incredibly expensive, difficult and time-consuming - and nobody

wants

> your child to have it.

>

> So we were pleasantly surprised when we sat down with the school's

team

> and learned the district had recently begun a preschool autism

program

> using the treatment the books recommended, applied behavioral

analysis,

> or A.B.A.

>

> We had some questions. For one thing, he would be getting 10 hours

of

> one-on-one therapy a week, instead of the 30 to 40 hours a week

called

> for. We were told that quality was what counted, not quantity. We

also

> knew we had few options.

>

> On the way home, Marcia, a physician, seethed. " Do you think I

prescribe

> half the appropriate dose of antibiotics? " she demanded. But

> needed help, and the clock was ticking.

>

> To get more help, Marcia took him to a private speech

therapist.

> She learned something about A.B.A. that day, but also about how

little

> we knew about what was going on inside his head. She learned, for

> instance, that had forgotten his name.

>

> " What's your name? " asked the therapist, Kathy Rooney.

>

> Silence.

>

> " What's your NAA-aaame, " she chanted in a singsong. " JAMES o-NEEE-

il. "

>

> After a few more times, she repeated the question. After a pause,

he

> answered, and Kathy showered him with praise.

>

> The " analysis " in A.B.A. means figuring out what a child needs to

learn,

> the best way to teach it - and whether it's actually learned. The

> behavioral part means rewarding desired behavior.

>

> In some ways, that sounded like a more rigorous version of ordinary

> parental tasks, and Marcia began to introduce bits of it, like

giving

> milk only when he said " milk " instead of just pointing. I was

> taking him to the pool a lot, mostly to wear him out, since he had

> trouble sleeping. loved to jump in, and I tried taking

advantage

> of that desire to perform what I'd later learn was " discrete trial

> instruction. " I held up one finger and said, " How many? One! " If

> said " one, " splash! By the end of the week, he was up to three,

unprompted.

>

> We began to discover that is, for a child with his problems,

a

> quick learner when taught in the right way. And not everything had

been

> lost. Shown a hard yellow plastic hat, he answered, slowly but

surely,

> " con-struc-tion hel-met. "

>

> But as Marcia began to learn more, her enthusiasm about the happy

notes

> coming home with began to dim. His teachers seemed to have a

hard

> time motivating him. Most important, he just didn't seem to be

learning

> much.

>

> We contacted the parents of the other children in the program, and

found

> they were also concerned. Together, we went to the district's

special

> education director, asking her to let an outside expert make

> suggestions. But as the director talked about the many costs the

> districts was facing, the tears trickling down one mother's cheeks

dried

> up. We all got the message: They may be your children, but this is

our

> program.

>

> Home Program, Tiny Steps

>

> That's how we came to find ourselves sitting in our basement on a

> stifling July day with strangers who were about to become the most

> important people in our lives.

>

> When Marcia had first read about " home programs, " her reaction had

been

> succinct: " Not for us! " Creating a school for one from scratch

seemed

> insane, even without the lawsuit it would obviously require.

>

> But she had given up her full-time position and done it. Our

greatest

> stroke of luck was finding someone to get us started: Hampel

of the

> Rutgers Autism Program, whom we had contacted when we thought the

> district might like an expert's help.

>

> He had high hopes, which he expressed in an unsettling way. "

is

> the kind of kid who is the scariest to work with, " he

said, " because you

> never know if you're going fast enough to keep up with his

potential. "

>

> What followed was an isolating time for , at a little table

for up

> to eight hours a day, doing work most children would find tedious

in the

> extreme. Skills normally acquired in a blended rush were introduced

in

> the tiniest of steps. An instructor would place two blocks side by

side,

> one flat, one vertical, say " Do this, " and hand them to . Or

touch

> her nose - " do this " - then her cheek, eyes, brow.

>

> But after a few tantrums it became clear that liked to work.

Not

> just for the hugs and shiny stickers. He liked being connected. And

it

> was only under this kind of bare, intense focus that he could

connect.

>

> Data is the lifeblood of A.B.A.; it is the only way to spot your

> mistakes. But along with charts of 's trial-by-trial

performance,

> his instructors kept a log of " spontaneous language. " On the

program's

> first day there is only one entry: " I want cheese crackers. " In

August,

> that starts to creep up, to a half a dozen or so. In late September

> there is an explosion: " I want a big tickle. " " I want the Play-

Doh. "

> Another one also jumps out: " Where is ? "

>

> A 4-year-old whose family had just arrived from Poland,

came

> with her mother several times a week to visit our neighbor. She

knew no

> English and had nothing to do - except try to get to play.

Such a

> determined child! was used to a language barrier and was

> tireless in her efforts to get into a game, even as simple a

one

> as rolling toy cars down the steps. " Jems. Jems! JEMS!!!! "

>

> And it worked. For brief snatches could play along.

could play!

>

> What was new wasn't just , of course. was waking up,

> thanks to his work at the table. New skills were creating a new

interest

> in the world - which were making other new skills possible.

>

> Now we tried to use our time to extend his learning. I enlisted his

> brothers, Miles and to teach simple play scripts, like

saying,

> " Tickets, please! " when the chairs were lined up to make a train.

We

> worked on the countdown for a rocket ride. extended the

script:

> " To the moon! To the stars! AAAAAHHHH!!! WE CRASHED!!! "

>

> But every so often there was a fresh bucket of cold water to remind

us

> of how far he had to go - and that time was passing. Like this

blunt

> assessment from a speech pathologist when he turned 4: " Unless his

> language really picks up, he's not going to make it. "

>

> Making it meant placement in a mainstream kindergarten - a crucial

> sorting point. We went home scared, and Marcia made changes.

>

> For six weeks, the instructors focused almost entirely on getting

> to talk, a lot. One technique was simple. Usually got treats

as a

> reward for doing well at his programs. For now, all he needed to

get

> them was simply to ask for them.

>

> And it worked. The data the instructors took on requests per hour

crept

> up and up, but in truth we didn't need it. He wouldn't shut up. The

> intensive effort had jump-started some slumbering connection in the

> brain. And over months we began to see flashes of a new kind of

language

> - talking that goes back and forth, that changes with each thing

that is

> said.

>

> Then this, from the logbook for April 7, 2000:

>

> Jeanette: I like to eat chicken.

> : I like to eat breakfast.

> Jeanette: I like waffles for breakfast.

> : I like cereal for breakfast.

> A conversation.

>

> On the Road to Real School

>

> Also that spring, returned to the district preschool program

we

> had withdrawn him from the year before. He hadn't been ready for it

> then; now he was. And so were we: we had reached a settlement in

the

> lawsuit we had filed charging that the district had failed to

provide

> him with an education appropriate to his needs.

>

> That yearlong migraine had drained us of time, emotion and money at

a

> time when we had little enough to spare. But we also felt that if

we let

> the district pound on our child without hitting back, the pounding

would

> never stop. In the end, the court sided with the first family to go

to

> trial in our district. The creation of district-run autism programs

> clearly needs to be encouraged, the judge wrote, " but it cannot be

at

> the expense of a little boy. "

>

> For the next year we were on the on-ramp to real school in a blur

of

> preparation. But kindergarten turned out to be an anticlimax. He

was

> accompanied by one of his home instructors, acting as a " shadow, "

and

> yes, things went well, and yes, his problems there were the same

ones he

> had at home, like staying on task and following directions.

>

> What was big in kindergarten was something we hadn't prepared for:

Larry.

>

> Sometime during preschool, children had stopped being ghosts for

.

> But we gradually realized what was developing here was a

friendship -

> the hardest thing for a person with autism at any age.

>

> Larry Pan is enthusiasm with a crew cut. What attracted Larry to

?

> Perhaps it was 's sense of humor (think diaper jokes). Or

maybe

> they just were drawn to each others' big hearts.

>

> After our rocky start with our district, elementary school has been

> remarkably smooth. There was one dreadful time in first grade when

> suddenly began hitting his aide, raising the prospect that perhaps

he

> could not continue where he was.

>

> The solution turned out to be simple. A swap of aides was arranged,

and

> Jeanette, who had known since was 3, came in as a backup

shadow.

> She gave him a look and the nonsense stopped. But Marcia and I felt

as

> if we had been swept back to the cliff's edge. When a child falls

out of

> the mainstream, it is hard to return. Unable to sleep, I wondered

if

> this was what post-traumatic stress disorder felt like.

>

> Knowing He Is Different

>

> Nothing like that has happened again. There are still plenty of

problems

> - his progress, in some ways, consists of moving up to a better

class of

> problems. At camp this summer, didn't know how to handle a

boy who

> was mean; in years past he wouldn't have recognized the hostility.

> used to be unnaturally compliant: now his favorite song

begins, " You're

> not the boss of me now... "

>

> And then there's the most painful progress of all: right now

is

> wrestling with the knowledge that he has autism.

>

> Over the last year, it has become slowly apparent to that he

is

> different from other children, or at least he is thinking about it.

He

> recently asked Miles, who is now in first grade, why Miles doesn't

go to

> a resource room.

>

> But why tell him?

>

> Giving him a name for the difference he is beginning to grasp means

> letting him begin coping with the issues that will remain after his

> intervention fades away. It's strange to be thinking of the path to

> adulthood for a fan of " Ed, Edd n Eddy, " the silliest cartoon on

TV. But

> that's where this road leads.

>

> In my glummer moments, I think about as a boy who fell off a

train

> and is running to get back on. Time and again he reaches it - but

the

> train, too, is accelerating. Will the running never end?

>

> We used a more upbeat image to tell where he is now: he had

> rounded third and was getting ready to slide home.

>

> Still, raged and cried and insisted that he didn't have

autism,

> that other children he knew did.

>

> But he also had a lot of good questions. He knows that Larry gets

> tutoring in reading. Why doesn't that mean that he has autism?

and

> I had looked at an article about a kindergartner with cerebral

palsy.

> Could that boy get better? Which was worse?

>

> And he kept on thinking. Earlier this month, at the end of a day

spent

> on a research study, he was offered a T-shirt with a picture of a

brain.

> He angrily refused it. " I don't want to wear that to school, " he

said.

> " Nobody else in my class has autism. "

>

> In the car, he wept, asking " Why doesn't anybody else have autism? "

The

> next night, during a sleepover, he told Larry about the incident -

about

> how his brain was different, about how he used to have big

problems.

> What did Larry say? I asked . " That the only thing I know

about is

> peanut butter! " he said, and laughed.

>

> He had taken a chance and learned a lesson: Larry cares about him,

not

> his label.

>

> It made me realize: from now on who turns out to be is going

to be

> shaped more by him than by the work being done for him. will

be

> his own intervention.

>

> O'Neil is deputy editor of special sections at The Times.

>

> *

>

> The material in this post is distributed without profit to those

> who have expressed a prior interest in receiving the included

> information for research and educational purposes.

> For more information go to:

>

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>

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>

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> If you wish to use copyrighted material from this email for

> purposes that go beyond 'fair use', you must obtain permission

> from the copyright owner.

>

December 29, 2004

I think I understand 's frustration. I see lots of stories about ABA and

few, if any, about biomedical interventions. I'm afraid sometimes that

information isn't getting reported.

Re: Slow-Motion Miracle: One Boy's Journey Out of

Autism's Grasp

This seems to be a story written by the father - maybe they don't

know about chelation and biomedical intervention. Or maybe they do,

and have chosen not to try it. Is your point that the NYT shouldn't

publish stories about autism that don't mention alternative

treatments?

We're doing just about everything with our son BUT ABA. He's made

some improvements, but I really don't know if they are due to the

interventions or the natural course of his autism. I'm really

wondering lately if we're missing by the boat by not also doing ABA

or VB.

> {Words like Chelation, Autism Research Institute, and supplements

do not

> appear in this article. The NYT's one-sided, propagandistic

approach to

> pseudo-journalism continues. -}

>

> Slow-Motion Miracle: One Boy's Journey Out of Autism's Grasp

> By JOHN O'NEIL

> http://www.nytimes.com/2004/12/29/education/29autism.html

>

> O'Neil/The New York Times

>

> {caption} when he was 2 years old. A bubbling child, he grew

> increasingly withdrawn, repeating meaningless phrases, lying on the

> floor squinting or crying at loud noises.

>

> ix years ago, my son fell down a well, and he's still

climbing out.

>

> has autism. He is one of 150,000 or more American children

> classified in the last decade as having the once-rare disorder,

> including 25,000 in 2003. Half a century ago, polio epidemics left

> perhaps 5,000 children a year with some degree of disability, and

the

> sight of children stricken overnight galvanized the nation. But

autism's

> arrival, and the response to it, has not been so dramatic.

>

> In 's case, a bubbling 2-year-old who loved " mashed totatoes "

and

> sword-fighting faded away. In his place was a nearly silent,

unhappy

> child who repeated meaningless phrases, lay on the floor squinting

or

> pulled cowboy boots on and off until his feet were raw. Every day

he

> fell a little further out of the world.

>

> But one recent afternoon sat at our kitchen table with his

best

> friend, Larry, goofing off instead of doing homework. They made

dumb

> jokes and gossiped about their " girlfriends " at their school, just

up

> the street.

>

> It's hard for me to explain how many dreams-come-true are reflected

in

> that one sentence.

>

> 's journey is by no means over. He still has significant

problems

> with reading comprehension, math, attention and social skills. He

gets

> stuck on favorite subjects - though this year, the Yankees,

thankfully,

> replaced the War of 1812. He can sound as if he is speaking a

second

> language, with the halts and mangling of idioms that implies. With

his

> peers, he hovers at the border of acceptance.

>

> But even that list of problems is a sign of how far he has come.

Six

> years ago, he couldn't engage with the world around him.

>

> Scientists know little about autism. What they have learned has

> underscored the complexity of its genetics and anatomical

abnormalities,

> which begin developing soon after conception. They do know a lot,

> however, about what to do about autism, enough that a federal panel

has

> set a 10-year target of preventing 25 percent of new cases. The

panel's

> plan faces huge obstacles, starting with an absence of additional

funds

> to carry it out. But the hardest part, panel members said, is

making use

> of what we already can do.

>

> In that sense, 's progress has a sadder side: that he has been

such

> an exception. Not everybody who gets the treatment he did

progresses so

> far, although some go further. But only a relative handful of

children

> with autism are thought to receive even the minimum standard of

care, a

> pattern reflected in an increase in requests for institutional

> placements as the leading edge of last decade's cases reaches

adolescence.

>

> The other key to improved outcomes is early detection. Most cases

are

> caught much later than they could have been, and in that sense

was

> no exception. Had we any idea what to look for, we could have known

in

> 's first year of life, I think.

>

> was an easy baby. But looking back, part of the easiness was

a

> lack of intensity in his connection to us. There was some

difficulty in

> meeting our gaze, and a lack of curiosity about things pointed out

to

> him - both hallmarks of autism, and red flags on formal

developmental

> screenings. never got one, perhaps because his sunny

disposition

> obscured such flaws, and because we were never worried enough to

raise

> any concerns with his pediatrician.

>

> When he was 2½, we moved to northern New Jersey six weeks after our

> youngest son, Miles, was born. When 's behavior started to

become a

> bit odd, we just figured he was overwhelmed.

>

> It took a third party to force us to focus on him. The director of

> 's new preschool took my wife, Marcia, aside one day. " He just

> seems a little off to me, " Maureen, the director, said. " Sometimes

he

> seems not to hear me. "

>

> We know now that she was worried about more than his hearing. In

the

> first of many strokes of luck, she was familiar with autism, having

> taught in a local specialty school. She suggested that we contact

the

> local school district for an evaluation. was fine, I thought,

but

> why not?

>

> As the evaluation process wound on toward his third birthday and

's

> behavior became more difficult, it became clear that he was not

fine.

> When Maureen called Marcia into her office again, to give a name to

our

> fears - " I think is a little bit autistic " - it made all too

much

> sense.

>

> Good News, Bad News

>

> A library grew on our bedside table, bearing a message that seemed

a

> sort of good news, bad news joke. The bad news: autism has no cure.

The

> good news: there can be effective treatment. The bad news: it's

> incredibly expensive, difficult and time-consuming - and nobody

wants

> your child to have it.

>

> So we were pleasantly surprised when we sat down with the school's

team

> and learned the district had recently begun a preschool autism

program

> using the treatment the books recommended, applied behavioral

analysis,

> or A.B.A.

>

> We had some questions. For one thing, he would be getting 10 hours

of

> one-on-one therapy a week, instead of the 30 to 40 hours a week

called

> for. We were told that quality was what counted, not quantity. We

also

> knew we had few options.

>

> On the way home, Marcia, a physician, seethed. " Do you think I

prescribe

> half the appropriate dose of antibiotics? " she demanded. But

> needed help, and the clock was ticking.

>

> To get more help, Marcia took him to a private speech

therapist.

> She learned something about A.B.A. that day, but also about how

little

> we knew about what was going on inside his head. She learned, for

> instance, that had forgotten his name.

>

> " What's your name? " asked the therapist, Kathy Rooney.

>

> Silence.

>

> " What's your NAA-aaame, " she chanted in a singsong. " JAMES o-NEEE-

il. "

>

> After a few more times, she repeated the question. After a pause,

he

> answered, and Kathy showered him with praise.

>

> The " analysis " in A.B.A. means figuring out what a child needs to

learn,

> the best way to teach it - and whether it's actually learned. The

> behavioral part means rewarding desired behavior.

>

> In some ways, that sounded like a more rigorous version of ordinary

> parental tasks, and Marcia began to introduce bits of it, like

giving

> milk only when he said " milk " instead of just pointing. I was

> taking him to the pool a lot, mostly to wear him out, since he had

> trouble sleeping. loved to jump in, and I tried taking

advantage

> of that desire to perform what I'd later learn was " discrete trial

> instruction. " I held up one finger and said, " How many? One! " If

> said " one, " splash! By the end of the week, he was up to three,

unprompted.

>

> We began to discover that is, for a child with his problems,

a

> quick learner when taught in the right way. And not everything had

been

> lost. Shown a hard yellow plastic hat, he answered, slowly but

surely,

> " con-struc-tion hel-met. "

>

> But as Marcia began to learn more, her enthusiasm about the happy

notes

> coming home with began to dim. His teachers seemed to have a

hard

> time motivating him. Most important, he just didn't seem to be

learning

> much.

>

> We contacted the parents of the other children in the program, and

found

> they were also concerned. Together, we went to the district's

special

> education director, asking her to let an outside expert make

> suggestions. But as the director talked about the many costs the

> districts was facing, the tears trickling down one mother's cheeks

dried

> up. We all got the message: They may be your children, but this is

our

> program.

>

> Home Program, Tiny Steps

>

> That's how we came to find ourselves sitting in our basement on a

> stifling July day with strangers who were about to become the most

> important people in our lives.

>

> When Marcia had first read about " home programs, " her reaction had

been

> succinct: " Not for us! " Creating a school for one from scratch

seemed

> insane, even without the lawsuit it would obviously require.

>

> But she had given up her full-time position and done it. Our

greatest

> stroke of luck was finding someone to get us started: Hampel

of the

> Rutgers Autism Program, whom we had contacted when we thought the

> district might like an expert's help.

>

> He had high hopes, which he expressed in an unsettling way. "

is

> the kind of kid who is the scariest to work with, " he

said, " because you

> never know if you're going fast enough to keep up with his

potential. "

>

> What followed was an isolating time for , at a little table

for up

> to eight hours a day, doing work most children would find tedious

in the

> extreme. Skills normally acquired in a blended rush were introduced

in

> the tiniest of steps. An instructor would place two blocks side by

side,

> one flat, one vertical, say " Do this, " and hand them to . Or

touch

> her nose - " do this " - then her cheek, eyes, brow.

>

> But after a few tantrums it became clear that liked to work.

Not

> just for the hugs and shiny stickers. He liked being connected. And

it

> was only under this kind of bare, intense focus that he could

connect.

>

> Data is the lifeblood of A.B.A.; it is the only way to spot your

> mistakes. But along with charts of 's trial-by-trial

performance,

> his instructors kept a log of " spontaneous language. " On the

program's

> first day there is only one entry: " I want cheese crackers. " In

August,

> that starts to creep up, to a half a dozen or so. In late September

> there is an explosion: " I want a big tickle. " " I want the Play-

Doh. "

> Another one also jumps out: " Where is ? "

>

> A 4-year-old whose family had just arrived from Poland,

came

> with her mother several times a week to visit our neighbor. She

knew no

> English and had nothing to do - except try to get to play.

Such a

> determined child! was used to a language barrier and was

> tireless in her efforts to get into a game, even as simple a

one

> as rolling toy cars down the steps. " Jems. Jems! JEMS!!!! "

>

> And it worked. For brief snatches could play along.

could play!

>

> What was new wasn't just , of course. was waking up,

> thanks to his work at the table. New skills were creating a new

interest

> in the world - which were making other new skills possible.

>

> Now we tried to use our time to extend his learning. I enlisted his

> brothers, Miles and to teach simple play scripts, like

saying,

> " Tickets, please! " when the chairs were lined up to make a train.

We

> worked on the countdown for a rocket ride. extended the

script:

> " To the moon! To the stars! AAAAAHHHH!!! WE CRASHED!!! "

>

> But every so often there was a fresh bucket of cold water to remind

us

> of how far he had to go - and that time was passing. Like this

blunt

> assessment from a speech pathologist when he turned 4: " Unless his

> language really picks up, he's not going to make it. "

>

> Making it meant placement in a mainstream kindergarten - a crucial

> sorting point. We went home scared, and Marcia made changes.

>

> For six weeks, the instructors focused almost entirely on getting

> to talk, a lot. One technique was simple. Usually got treats

as a

> reward for doing well at his programs. For now, all he needed to

get

> them was simply to ask for them.

>

> And it worked. The data the instructors took on requests per hour

crept

> up and up, but in truth we didn't need it. He wouldn't shut up. The

> intensive effort had jump-started some slumbering connection in the

> brain. And over months we began to see flashes of a new kind of

language

> - talking that goes back and forth, that changes with each thing

that is

> said.

>

> Then this, from the logbook for April 7, 2000:

>

> Jeanette: I like to eat chicken.

> : I like to eat breakfast.

> Jeanette: I like waffles for breakfast.

> : I like cereal for breakfast.

> A conversation.

>

> On the Road to Real School

>

> Also that spring, returned to the district preschool program

we

> had withdrawn him from the year before. He hadn't been ready for it

> then; now he was. And so were we: we had reached a settlement in

the

> lawsuit we had filed charging that the district had failed to

provide

> him with an education appropriate to his needs.

>

> That yearlong migraine had drained us of time, emotion and money at

a

> time when we had little enough to spare. But we also felt that if

we let

> the district pound on our child without hitting back, the pounding

would

> never stop. In the end, the court sided with the first family to go

to

> trial in our district. The creation of district-run autism programs

> clearly needs to be encouraged, the judge wrote, " but it cannot be

at

> the expense of a little boy. "

>

> For the next year we were on the on-ramp to real school in a blur

of

> preparation. But kindergarten turned out to be an anticlimax. He

was

> accompanied by one of his home instructors, acting as a " shadow, "

and

> yes, things went well, and yes, his problems there were the same

ones he

> had at home, like staying on task and following directions.

>

> What was big in kindergarten was something we hadn't prepared for:

Larry.

>

> Sometime during preschool, children had stopped being ghosts for

.

> But we gradually realized what was developing here was a

friendship -

> the hardest thing for a person with autism at any age.

>

> Larry Pan is enthusiasm with a crew cut. What attracted Larry to

?

> Perhaps it was 's sense of humor (think diaper jokes). Or

maybe

> they just were drawn to each others' big hearts.

>

> After our rocky start with our district, elementary school has been

> remarkably smooth. There was one dreadful time in first grade when

> suddenly began hitting his aide, raising the prospect that perhaps

he

> could not continue where he was.

>

> The solution turned out to be simple. A swap of aides was arranged,

and

> Jeanette, who had known since was 3, came in as a backup

shadow.

> She gave him a look and the nonsense stopped. But Marcia and I felt

as

> if we had been swept back to the cliff's edge. When a child falls

out of

> the mainstream, it is hard to return. Unable to sleep, I wondered

if

> this was what post-traumatic stress disorder felt like.

>

> Knowing He Is Different

>

> Nothing like that has happened again. There are still plenty of

problems

> - his progress, in some ways, consists of moving up to a better

class of

> problems. At camp this summer, didn't know how to handle a

boy who

> was mean; in years past he wouldn't have recognized the hostility.

> used to be unnaturally compliant: now his favorite song

begins, " You're

> not the boss of me now... "

>

> And then there's the most painful progress of all: right now

is

> wrestling with the knowledge that he has autism.

>

> Over the last year, it has become slowly apparent to that he

is

> different from other children, or at least he is thinking about it.

He

> recently asked Miles, who is now in first grade, why Miles doesn't

go to

> a resource room.

>

> But why tell him?

>

> Giving him a name for the difference he is beginning to grasp means

> letting him begin coping with the issues that will remain after his

> intervention fades away. It's strange to be thinking of the path to

> adulthood for a fan of " Ed, Edd n Eddy, " the silliest cartoon on

TV. But

> that's where this road leads.

>

> In my glummer moments, I think about as a boy who fell off a

train

> and is running to get back on. Time and again he reaches it - but

the

> train, too, is accelerating. Will the running never end?

>

> We used a more upbeat image to tell where he is now: he had

> rounded third and was getting ready to slide home.

>

> Still, raged and cried and insisted that he didn't have

autism,

> that other children he knew did.

>

> But he also had a lot of good questions. He knows that Larry gets

> tutoring in reading. Why doesn't that mean that he has autism?

and

> I had looked at an article about a kindergartner with cerebral

palsy.

> Could that boy get better? Which was worse?

>

> And he kept on thinking. Earlier this month, at the end of a day

spent

> on a research study, he was offered a T-shirt with a picture of a

brain.

> He angrily refused it. " I don't want to wear that to school, " he

said.

> " Nobody else in my class has autism. "

>

> In the car, he wept, asking " Why doesn't anybody else have autism? "

The

> next night, during a sleepover, he told Larry about the incident -

about

> how his brain was different, about how he used to have big

problems.

> What did Larry say? I asked . " That the only thing I know

about is

> peanut butter! " he said, and laughed.

>

> He had taken a chance and learned a lesson: Larry cares about him,

not

> his label.

>

> It made me realize: from now on who turns out to be is going

to be

> shaped more by him than by the work being done for him. will

be

> his own intervention.

>

> O'Neil is deputy editor of special sections at The Times.

>

> *

>

> The material in this post is distributed without profit to those

> who have expressed a prior interest in receiving the included

> information for research and educational purposes.

> For more information go to:

> http://www4.law.cornell.edu/uscode/17/107.html

> <http://oregon.uoregon.edu/%7Ecsundt/documents.htm>

> http://oregon.uoregon.edu/~csundt/documents.htm

> <http://oregon.uoregon.edu/%7Ecsundt/documents.htm>

> If you wish to use copyrighted material from this email for

> purposes that go beyond 'fair use', you must obtain permission

> from the copyright owner.

>

December 29, 2004

My jibe at NYT today is because virtually all their articles don't

mention therapies other than training, thus today's article reinforces

yesterday's, which was far more blatant by bashing non-mainstream

approaches. Even Bernie Rimland says that intensive training asap is

beneficial. Many parents report that ABA effects were minimal until

augmented by biomed evals and child-specific treatments. CSB delineates

4 main categories of response to biomed treatments, from wonderful, to

really nice, to just something or other, to nothing at all. Several

challenges attend the child who hasn't improved. For instance, some

fetal and neonatal neurologic impairment may be permanent, eg,

disruption of synaptic development during critical developmental periods

has long been known to induce lasting effects. Also, the current vogue

of lab-test arrays seems designed to be helpful for most kids but not

for all kids. Hugh Fudenberg's 1995-6 panels were far more thorough (4).

Today's panels have some categories Hugh didn't use. Every day I

wonder, how many of the non-responders to CSB-like protocols could be

helped this year if an expanded lab array had been purchased. And at

this point the cost of lab arrays becomes crucial. A more thorough array

costs more and would identify treatable pathologies in only a small

percentage of additional kids.

I find myself wondering: among the non-responders, how many kids have

been evaluated for the antibodies Connolly describes (1)? For

intra-monocyte pathogens whose atypical presence (2) could contribute to

the BBB antibodies Connolly et al described? These two questions point

towards lab tests most docs don't recommend, towards lab assays

described in clinical-research articles but virtually unavailable to the

general public, and towards potentially treatable pathways in small

subgroups of autistic kids. Of course, only the very wealthy can afford

more thorough lab arrays.

A 1979 book was remarkably prescient in describing the small subgroup of

autistic kids who got better (3). At one of my mini-DAN! presentations,

I offered quotes from the book (including the 1979 got-better rate) and

compared that rate with today's rates of improvement (eg, via IMFAR

chelation abstract of Holmes, Cave, El-Dahr) and asked if the new biomed

therapies are helping more kids than got better in 1979. The answer

appears to be Yes, even though not all kids get better enuff to attend

NT schools w/o aides.

A parallel to today's NYTimes article is found in cancer literature.

Spontaneous remissions are described, even in folks who refuse

treatment. The bodies of such individuals found ways to fight back

against the cancer and did so w/o chemotherapeutic intervention. A

question today's NYT article doesn't seem to ask is: Was the child a

sick child (go to times, see his picture) who for various reasons got

well, and, as this occurred, was having ABA therapy?

For some parents, a non-responder to biomed evals and treatments faces a

dilemma - expand the array of lab data? Bail out? There's no sure

answer here. Each parent must choose. I recommend the DeMyer book for

parents and physicians wanting an eye-opening glimpse of autism circa

1979, when (even then) some sick kids who qualified for an autism dx

recovered.

Today, 53 copies were available vir http://www.Bookfinder.com, many

quite reasonably priced.

1: J Pediatr. 1999 May;134(5):607-13.

Serum autoantibodies to brain in Landau-Kleffner variant, autism, and other

neurologic disorders.

Connolly AM, Chez MG, Pestronk A, Arnold ST, Mehta S, Deuel RK.

Departments of Neurology and Pediatrics, Washington University, St. Louis

Children's Hospital, St Louis, Missouri, USA.

OBJECTIVE: Etiologically unexplained disorders of language and social

development have often been reported to improve in patients treated with

immune-modulating regimens. Here we determined the frequency of autoantibodies

to brain among such children. DESIGN: We collected sera from a cohort of

children with (1) pure Landau-Kleffner syndrome (n = 2), (2) Landau-Kleffner

syndrome variant (LKSV, n = 11), and (3) autistic spectrum disorder (ASD, n =

11). None had received immune-modulating treatment before the serum sample was

obtained. Control sera (n = 71) were from 29 healthy children, 22 with

non-neurologic illnesses (NNIs), and 20 children with other neurologic disorders

(ONDs). We identified brain autoantibodies by immunostaining of human temporal

cortex and antinuclear autoantibodies using commercially available kits.

RESULTS: IgG anti-brain autoantibodies were present in 45% of sera from children

with LKSV, 27% with ASD, and 10% with ONDs compared with 2% from healthy

children and control children with NNIs. IgM autoantibodies were present in 36%

of sera from children with ASD, 9% with LKSV, and 15% with ONDs compared with 0%

of control sera. Labeling studies identified one antigenic target to be

endothelial cells. Antinuclear antibodies with titers >/=1:80 were more common

in children with ASD and control children with ONDs. CONCLUSION: Children with

LKSV and ASD have a greater frequency of serum antibodies to brain endothelial

cells and to nuclei than children with NNIs or healthy children. The presence of

these antibodies raises the possibility that autoimmunity plays a role in the

pathogenesis of language and social developmental abnormalities in a subset of

children with these disorders.

PMID: 10228297 [PubMed - indexed for MEDLINE]

2: Med Hypotheses. 2001 Apr;56(4):523-31.

Intra-monocyte pathogens delineate autism subgroups.

Binstock T.

Immune panels of many autism-spectrum children reveal signs of atypical

infections and shifted cell counts. In conjunction with trait-related cerebral

hypometabolism and hypoperfusion, these findings suggest a hypothesis: Several

autism-spectrum subgroups derive from intra-monocyte pathogens such as measles

virus, cytomegalovirus, human herpesvirus 6, and Yersinia enterocolitica.

Furthermore, with much inter-child variation, their effects manifest as

diminished hematopoiesis, impaired peripheral immunity, and altered blood-brain

barrier function often accompanied by demyelination. In some such children, one

or more of these pathogens persists as a chronic-active, seemingly subclinical

infection etiologically significant to the child's autistic traits. Within these

subgroups, immune impairments and atypical infections may be treatable.

PMID: 11339860 [PubMed - indexed for MEDLINE]

3. n K. DeMyer. Parents and children in autism.

4: Biotherapy. 1996;9(1-3):143-7.

Dialysable lymphocyte extract (DLyE) in infantile onset autism: a pilot study.

Fudenberg HH.

Neurolmmuno Therapeutics Research Foundation Spartanburg, S.C., USA.

40 infantile autistic patients were studied. They ranged from 6 years to 15

years of age at entry. 22 were cases of classical infantile autism; whereas 18

lacked one or more clinical defects associated with infantile autism

( " pseudo-autism " ). Of the 22 with classic autism, 21 responded to transfer

factor (TF) treatment by gaining at least 2 points in symptoms severity score

average (SSSA); and 10 became normal in that they were main-streamed in school

and clinical characteristics were fully normalized. Of the 18 remaining, 4

responded to TF, some to other therapies. After cessation of TF therapy, 5 in

the autistic group and 3 of the pseudo-autistic group regressed, but they did

not drop as low as baseline levels.

Publication Types:

Clinical Trial

PMID: 8993773 [PubMed - indexed for MEDLINE]

wrote:

>This seems to be a story written by the father - maybe they don't

>know about chelation and biomedical intervention. Or maybe they do,

>and have chosen not to try it. Is your point that the NYT shouldn't

>publish stories about autism that don't mention alternative

>treatments?

>

>We're doing just about everything with our son BUT ABA. He's made

>some improvements, but I really don't know if they are due to the

>interventions or the natural course of his autism. I'm really

>wondering lately if we're missing by the boat by not also doing ABA

>or VB.

>

>>{Words like Chelation, Autism Research Institute, and supplements

>>

>do not

>

>>appear in this article. The NYT's one-sided, propagandistic

>>

>approach to

>

>>pseudo-journalism continues. -}

>>

>>Slow-Motion Miracle: One Boy's Journey Out of Autism's Grasp

>>By JOHN O'NEIL

>>http://www.nytimes.com/2004/12/29/education/29autism.html

>>

>

December 29, 2004

Theresa,

Something else that sticks in the back of my mind concerning ABA.

Maurice's children and others born in the mid eighties didn't receive the

onslaught of mercury as the children born after 1988 received.

I'm so happy for the great response to ABA, but for the children who have

received such great doses of mercury (as well as those children before 1988

who were extremely sensitive to smaller doses), biomedical interventions are

critical. (I personally know of families left destitute from ABA therapy

alone, and unfortunately are hesitant to shell out more money, hope, or

energy for recovery).

As I've heard it stated, if a child has cancer, do you stop educating him?

NO WAY! ASD children should receive the benefit of educational

interventions as well as biomedical, without question.

Becky

Re: Slow-Motion Miracle: One Boy's Journey Out of

Autism's Grasp

>

> My jibe at NYT today is because virtually all their articles don't

> mention therapies other than training, thus today's article reinforces

> yesterday's, which was far more blatant by bashing non-mainstream

> approaches. Even Bernie Rimland says that intensive training asap is

> beneficial. Many parents report that ABA effects were minimal until

> augmented by biomed evals and child-specific treatments. CSB delineates

> 4 main categories of response to biomed treatments, from wonderful, to

> really nice, to just something or other, to nothing at all. Several

> challenges attend the child who hasn't improved. For instance, some

> fetal and neonatal neurologic impairment may be permanent, eg,

> disruption of synaptic development during critical developmental periods

> has long been known to induce lasting effects. Also, the current vogue

> of lab-test arrays seems designed to be helpful for most kids but not

> for all kids. Hugh Fudenberg's 1995-6 panels were far more thorough (4).

> Today's panels have some categories Hugh didn't use. Every day I

> wonder, how many of the non-responders to CSB-like protocols could be

> helped this year if an expanded lab array had been purchased. And at

> this point the cost of lab arrays becomes crucial. A more thorough array

> costs more and would identify treatable pathologies in only a small

> percentage of additional kids.

>

> I find myself wondering: among the non-responders, how many kids have

> been evaluated for the antibodies Connolly describes (1)? For

> intra-monocyte pathogens whose atypical presence (2) could contribute to

> the BBB antibodies Connolly et al described? These two questions point

> towards lab tests most docs don't recommend, towards lab assays

> described in clinical-research articles but virtually unavailable to the

> general public, and towards potentially treatable pathways in small

> subgroups of autistic kids. Of course, only the very wealthy can afford

> more thorough lab arrays.

>

> A 1979 book was remarkably prescient in describing the small subgroup of

> autistic kids who got better (3). At one of my mini-DAN! presentations,

> I offered quotes from the book (including the 1979 got-better rate) and

> compared that rate with today's rates of improvement (eg, via IMFAR

> chelation abstract of Holmes, Cave, El-Dahr) and asked if the new biomed

> therapies are helping more kids than got better in 1979. The answer

> appears to be Yes, even though not all kids get better enuff to attend

> NT schools w/o aides.

>

> A parallel to today's NYTimes article is found in cancer literature.

> Spontaneous remissions are described, even in folks who refuse

> treatment. The bodies of such individuals found ways to fight back

> against the cancer and did so w/o chemotherapeutic intervention. A

> question today's NYT article doesn't seem to ask is: Was the child a

> sick child (go to times, see his picture) who for various reasons got

> well, and, as this occurred, was having ABA therapy?

>

> For some parents, a non-responder to biomed evals and treatments faces a

> dilemma - expand the array of lab data? Bail out? There's no sure

> answer here. Each parent must choose. I recommend the DeMyer book for

> parents and physicians wanting an eye-opening glimpse of autism circa

> 1979, when (even then) some sick kids who qualified for an autism dx

> recovered.

>

> Today, 53 copies were available vir http://www.Bookfinder.com, many

> quite reasonably priced.

>

> 1: J Pediatr. 1999 May;134(5):607-13.

>

> Serum autoantibodies to brain in Landau-Kleffner variant, autism, and

> other

> neurologic disorders.

>

> Connolly AM, Chez MG, Pestronk A, Arnold ST, Mehta S, Deuel RK.

>

> Departments of Neurology and Pediatrics, Washington University, St. Louis

> Children's Hospital, St Louis, Missouri, USA.

>

> OBJECTIVE: Etiologically unexplained disorders of language and social

> development have often been reported to improve in patients treated with

> immune-modulating regimens. Here we determined the frequency of

> autoantibodies

> to brain among such children. DESIGN: We collected sera from a cohort of

> children with (1) pure Landau-Kleffner syndrome (n = 2), (2)

> Landau-Kleffner

> syndrome variant (LKSV, n = 11), and (3) autistic spectrum disorder (ASD,

> n =

> 11). None had received immune-modulating treatment before the serum sample

> was

> obtained. Control sera (n = 71) were from 29 healthy children, 22 with

> non-neurologic illnesses (NNIs), and 20 children with other neurologic

> disorders

> (ONDs). We identified brain autoantibodies by immunostaining of human

> temporal

> cortex and antinuclear autoantibodies using commercially available kits.

> RESULTS: IgG anti-brain autoantibodies were present in 45% of sera from

> children

> with LKSV, 27% with ASD, and 10% with ONDs compared with 2% from healthy

> children and control children with NNIs. IgM autoantibodies were present

> in 36%

> of sera from children with ASD, 9% with LKSV, and 15% with ONDs compared

> with 0%

> of control sera. Labeling studies identified one antigenic target to be

> endothelial cells. Antinuclear antibodies with titers >/=1:80 were more

> common

> in children with ASD and control children with ONDs. CONCLUSION: Children

> with

> LKSV and ASD have a greater frequency of serum antibodies to brain

> endothelial

> cells and to nuclei than children with NNIs or healthy children. The

> presence of

> these antibodies raises the possibility that autoimmunity plays a role in

> the

> pathogenesis of language and social developmental abnormalities in a

> subset of

> children with these disorders.

>

> PMID: 10228297 [PubMed - indexed for MEDLINE]

>

> 2: Med Hypotheses. 2001 Apr;56(4):523-31.

>

> Intra-monocyte pathogens delineate autism subgroups.

>

> Binstock T.

>

> Immune panels of many autism-spectrum children reveal signs of atypical

> infections and shifted cell counts. In conjunction with trait-related

> cerebral

> hypometabolism and hypoperfusion, these findings suggest a hypothesis:

> Several

> autism-spectrum subgroups derive from intra-monocyte pathogens such as

> measles

> virus, cytomegalovirus, human herpesvirus 6, and Yersinia enterocolitica.

> Furthermore, with much inter-child variation, their effects manifest as

> diminished hematopoiesis, impaired peripheral immunity, and altered

> blood-brain

> barrier function often accompanied by demyelination. In some such

> children, one

> or more of these pathogens persists as a chronic-active, seemingly

> subclinical

> infection etiologically significant to the child's autistic traits. Within

> these

> subgroups, immune impairments and atypical infections may be treatable.

>

> PMID: 11339860 [PubMed - indexed for MEDLINE]

>

> 3. n K. DeMyer. Parents and children in autism.

>

> 4: Biotherapy. 1996;9(1-3):143-7.

>

> Dialysable lymphocyte extract (DLyE) in infantile onset autism: a pilot

> study.

>

> Fudenberg HH.

>

> Neurolmmuno Therapeutics Research Foundation Spartanburg, S.C., USA.

>

> 40 infantile autistic patients were studied. They ranged from 6 years to

> 15

> years of age at entry. 22 were cases of classical infantile autism;

> whereas 18

> lacked one or more clinical defects associated with infantile autism

> ( " pseudo-autism " ). Of the 22 with classic autism, 21 responded to transfer

> factor (TF) treatment by gaining at least 2 points in symptoms severity

> score

> average (SSSA); and 10 became normal in that they were main-streamed in

> school

> and clinical characteristics were fully normalized. Of the 18 remaining, 4

> responded to TF, some to other therapies. After cessation of TF therapy, 5

> in

> the autistic group and 3 of the pseudo-autistic group regressed, but they

> did

> not drop as low as baseline levels.

>

> Publication Types:

> Clinical Trial

>

> PMID: 8993773 [PubMed - indexed for MEDLINE]

>

> wrote:

>

>>This seems to be a story written by the father - maybe they don't

>>know about chelation and biomedical intervention. Or maybe they do,

>>and have chosen not to try it. Is your point that the NYT shouldn't

>>publish stories about autism that don't mention alternative

>>treatments?

>>

>>We're doing just about everything with our son BUT ABA. He's made

>>some improvements, but I really don't know if they are due to the

>>interventions or the natural course of his autism. I'm really

>>wondering lately if we're missing by the boat by not also doing ABA

>>or VB.

>>

>>>{Words like Chelation, Autism Research Institute, and supplements

>>>

>>do not

>>

>>>appear in this article. The NYT's one-sided, propagandistic

>>>

>>approach to

>>

>>>pseudo-journalism continues. -}

>>>

>>>Slow-Motion Miracle: One Boy's Journey Out of Autism's Grasp

>>>By JOHN O'NEIL

>>>http://www.nytimes.com/2004/12/29/education/29autism.html

>>>

>>

>

December 29, 2004

I think that early intervention (age two or less) is extremely important with

biomedical intervention. I am convinced that my son could have avoided some of

the terrible symptoms he suffered if an educated doc had seen him and advised

some testing to see where he was with the immune system. Instead, he was four

before the most intensive stuff was started, and even older before the best

biomeds were started.

I too long to see articles appearing mentioning the biomedical approach. There

are so many children out there that could be saved from extreme suffering, if

only their parents knew about all of this.

ABA, or any other occupation therapy cannot relieve the suffering of the

inflamed gut, severe constipation, or diarrhea, and the list goes on with the

physical problems.