NYTimes: One Boy's Journey Out of Autism's Grasp

[Guest guest]

One Boy's Journey Out of Autism's Grasp

December 29, 2004

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.

http://www.nytimes.com/2004/12/29/education/29autism.html?ex=1105354911 & ei=1 & en=\

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