Fw: [AHA-AS-PDD] Digest Number 229

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

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Message: 1

Date: Wed, 29 Dec 2004 15:30:19 -0000

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

fyi

December 29, 2004

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

By JOHN O'NEIL

Six 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.

Copyright 2004 The New York Times Company |

________________________________________________________________________

________________________________________________________________________

R. Schissel, CSW

President (AHA/AS/PDD)

Advocates for Individuals with HighFunctioning Autism, Asperger's Syndrome

and other Pervasive Developmental Disorders

phone/fax

PO Box 475, Roslyn Heights, NY 11577

(patschiss@...)

Please visit (www.aha-as-pdd.org) to find the listings of our support group

dates, locations, and times. The groups meet monthly and are open to all at

no charge. There are groups for parents of school age children, parents of

older teens and adults, and for individuals on the spectrum.

Helpful Websites:

Part 200 Regulations:

Part 200.13(specific to Autism):

http://www.vesid.nysed.gov/specialed/publications/lawsandregs/part200.htm#200.13

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