NY Times article- Slow Motion Miracle: One Boy's Journey out of autism's grasp

[Guest guest]

Today in the NY Times there is another article about autism. This article is written by O'Neil. is the deputy editor of special sections at the NY Times.It is about his son who has autism. Also, in the Health secion there is a special section on autism- with updated news, multimedia and resources related to autism.

Heidi Fernandez

Slow-Motion Miracle: One Boy's Journey Out of Autism's GraspDecember 29, 2004 By JOHN O'NEIL Six years ago, my son fell down a well, and he'sstill climbing out. has autism. He is one of 150,000 or more Americanchildren classified in the last decade as having theonce-rare disorder, including 25,000 in 2003. Half acentury ago, polio epidemics left perhaps 5,000 children ayear with some degree of disability, and the sight ofchildren stricken overnight galvanized the nation. Butautism's arrival, and the response to it, has not been sodramatic. In 's case, a bubbling 2-year-old who loved "mashedtotatoes" and sword-fighting faded away. In his place was anearly silent, unhappy child who repeated meaninglessphrases, lay on the floor squinting or pulled cowboy bootson and off until his feet were raw. Every day he fell alittle further out of the world. But one recent afternoon sat at our kitchen tablewith his best friend, Larry, goofing off instead of doinghomework. 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 arereflected in that one sentence. 's journey is by no means over. He still hassignificant problems with reading comprehension, math,attention and social skills. He gets stuck on favoritesubjects - though this year, the Yankees, thankfully,replaced the War of 1812. He can sound as if he is speakinga second language, with the halts and mangling of idiomsthat implies. With his peers, he hovers at the border ofacceptance. But even that list of problems is a sign of how far he hascome. Six years ago, he couldn't engage with the worldaround him. Scientists know little about autism. What they have learnedhas underscored the complexity of its genetics andanatomical abnormalities, which begin developing soon afterconception. They do know a lot, however, about what to doabout autism, enough that a federal panel has set a 10-yeartarget of preventing 25 percent of new cases. The panel'splan faces huge obstacles, starting with an absence ofadditional funds to carry it out. But the hardest part,panel members said, is making use of what we already cando. In that sense, 's progress has a sadder side: that hehas been such an exception. Not everybody who gets thetreatment he did progresses so far, although some gofurther. But only a relative handful of children withautism are thought to receive even the minimum standard ofcare, a pattern reflected in an increase in requests forinstitutional placements as the leading edge of lastdecade's cases reaches adolescence. The other key to improved outcomes is early detection. Mostcases are caught much later than they could have been, andin that sense was no exception. Had we any idea whatto look for, we could have known in 's first year oflife, I think. was an easy baby. But looking back, part of theeasiness was a lack of intensity in his connection to us.There was some difficulty in meeting our gaze, and a lackof curiosity about things pointed out to him - bothhallmarks of autism, and red flags on formal developmentalscreenings. never got one, perhaps because his sunnydisposition obscured such flaws, and because we were neverworried enough to raise any concerns with his pediatrician.When he was 2½, we moved to northern New Jersey six weeksafter our youngest son, Miles, was born. When 'sbehavior started to become a bit odd, we just figured hewas overwhelmed. It took a third party to force us to focus on him. Thedirector 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 hishearing. In the first of many strokes of luck, she wasfamiliar with autism, having taught in a local specialtyschool. She suggested that we contact the local schooldistrict for an evaluation. was fine, I thought, butwhy not? As the evaluation process wound on toward his thirdbirthday and 's behavior became more difficult, itbecame clear that he was not fine. When Maureen calledMarcia into her office again, to give a name to our fears -"I think is a little bit autistic" - it made all toomuch sense. Good News, Bad News A library grew on our bedside table, bearing a message thatseemed a sort of good news, bad news joke. The bad news:autism has no cure. The good news: there can be effectivetreatment. The bad news: it's incredibly expensive,difficult and time-consuming - and nobody wants your childto have it. So we were pleasantly surprised when we sat down with theschool's team and learned the district had recently begun apreschool autism program using the treatment the booksrecommended, applied behavioral analysis, or A.B.A. We had some questions. For one thing, he would be getting10 hours of one-on-one therapy a week, instead of the 30 to40 hours a week called for. We were told that quality waswhat counted, not quantity. We also knew we had fewoptions. On the way home, Marcia, a physician, seethed. "Do youthink I prescribe half the appropriate dose ofantibiotics?" she demanded. But needed help, and theclock was ticking. To get more help, Marcia took him to a private speechtherapist. She learned something about A.B.A. that day, butalso about how little we knew about what was going oninside his head. She learned, for instance, that hadforgotten his name. "What's your name?" asked the therapist, Kathy Rooney.Silence. "What's your NAA-aaame," she chanted in a singsong. "JAMESo-NEEE-il." After a few more times, she repeated the question. After apause, he answered, and Kathy showered him with praise. The "analysis" in A.B.A. means figuring out what a childneeds to learn, the best way to teach it - and whether it'sactually learned. The behavioral part means rewardingdesired behavior. In some ways, that sounded like a more rigorous version ofordinary parental tasks, and Marcia began to introduce bitsof it, like giving milk only when he said "milk"instead of just pointing. I was taking him to the pool alot, mostly to wear him out, since he had trouble sleeping. loved to jump in, and I tried taking advantage ofthat desire to perform what I'd later learn was "discretetrial instruction." I held up one finger and said, "Howmany? One!" If said "one," splash! By the end of theweek, he was up to three, unprompted. We began to discover that is, for a child with hisproblems, a quick learner when taught in the right way. Andnot everything had been lost. Shown a hard yellow plastichat, he answered, slowly but surely, "con-struc-tionhel-met." But as Marcia began to learn more, her enthusiasm about thehappy notes coming home with began to dim. Histeachers seemed to have a hard time motivating him. Mostimportant, he just didn't seem to be learning much. We contacted the parents of the other children in theprogram, and found they were also concerned. Together, wewent to the district's special education director, askingher to let an outside expert make suggestions. But as thedirector talked about the many costs the districts wasfacing, the tears trickling down one mother's cheeks driedup. We all got the message: They may be your children, butthis is our program. Home Program, Tiny Steps That's how we came to find ourselves sitting in ourbasement on a stifling July day with strangers who wereabout to become the most important people in our lives. When Marcia had first read about "home programs," herreaction had been succinct: "Not for us!" Creating a schoolfor one from scratch seemed insane, even without thelawsuit 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 usstarted: Hampel of the Rutgers Autism Program, whom wehad contacted when we thought the district might like anexpert's help. He had high hopes, which he expressed in an unsettling way." is the kind of kid who is the scariest to workwith," he said, "because you never know if you're goingfast enough to keep up with his potential." What followed was an isolating time for , at a littletable for up to eight hours a day, doing work most childrenwould find tedious in the extreme. Skills normally acquiredin a blended rush were introduced in the tiniest of steps.An instructor would place two blocks side by side, oneflat, 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 likedto work. Not just for the hugs and shiny stickers. He likedbeing 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 spotyour mistakes. But along with charts of 'strial-by-trial performance, his instructors kept a log of"spontaneous language." On the program's first day there isonly one entry: "I want cheese crackers." In August, thatstarts to creep up, to a half a dozen or so. In lateSeptember there is an explosion: "I want a big tickle." "Iwant 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 visitour 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 inher efforts to get into a game, even as simple a oneas 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. waswaking up, thanks to his work at the table. New skills werecreating a new interest in the world - which were makingother new skills possible. Now we tried to use our time to extend his learning. Ienlisted his brothers, Miles and to teach simpleplay scripts, like saying, "Tickets, please!" when thechairs were lined up to make a train. We worked on thecountdown for a rocket ride. extended the script: "Tothe moon! To the stars! AAAAAHHHH!!! WE CRASHED!!!" But every so often there was a fresh bucket of cold waterto remind us of how far he had to go - and that time waspassing. Like this blunt assessment from a speechpathologist when he turned 4: "Unless his language reallypicks up, he's not going to make it." Making it meant placement in a mainstream kindergarten - acrucial sorting point. We went home scared, and Marcia madechanges. For six weeks, the instructors focused almost entirely ongetting to talk, a lot. One technique was simple.Usually got treats as a reward for doing well at hisprograms. For now, all he needed to get them was simply toask for them. And it worked. The data the instructors took on requestsper hour crept up and up, but in truth we didn't need it.He wouldn't shut up. The intensive effort had jump-startedsome slumbering connection in the brain. And over months webegan to see flashes of a new kind of language - talkingthat goes back and forth, that changes with each thing thatis said. Then this, from the logbook for April 7, 2000: Jeanette: I like to eat chicken. : I like to eatbreakfast. Jeanette: I like waffles for breakfast. : I like cereal for breakfast. A conversation. Onthe Road to Real School Also that spring, returned to the district preschoolprogram we had withdrawn him from the year before. Hehadn't been ready for it then; now he was. And so were we:we had reached a settlement in the lawsuit we had filedcharging that the district had failed to provide him withan education appropriate to his needs. That yearlong migraine had drained us of time, emotion andmoney at a time when we had little enough to spare. But wealso felt that if we let the district pound on our childwithout hitting back, the pounding would never stop. In theend, the court sided with the first family to go to trialin our district. The creation of district-run autismprograms 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 ina blur of preparation. But kindergarten turned out to be ananticlimax. He was accompanied by one of his homeinstructors, acting as a "shadow," and yes, things wentwell, and yes, his problems there were the same ones he hadat home, like staying on task and following directions. What was big in kindergarten was something we hadn'tprepared for: Larry. Sometime during preschool, children had stopped beingghosts for . But we gradually realized what wasdeveloping here was a friendship - the hardest thing for aperson with autism at any age. Larry Pan is enthusiasm with a crew cut. What attractedLarry to ? Perhaps it was 's sense of humor(think diaper jokes). Or maybe they just were drawn to eachothers' big hearts. After our rocky start with our district, elementary schoolhas been remarkably smooth. There was one dreadful time infirst grade when suddenly began hitting his aide,raising the prospect that perhaps he could not continuewhere he was. The solution turned out to be simple. A swap of aides wasarranged, and Jeanette, who had known since was 3,came in as a backup shadow. She gave him a look and thenonsense stopped. But Marcia and I felt as if we had beenswept back to the cliff's edge. When a child falls out ofthe mainstream, it is hard to return. Unable to sleep, Iwondered if this was what post-traumatic stress disorderfelt like. Knowing He Is Different Nothing like that has happened again. There are stillplenty of problems - his progress, in some ways, consistsof moving up to a better class of problems. At camp thissummer, 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 favoritesong 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 hasautism. Over the last year, it has become slowly apparent to that he is different from other children, or at least he isthinking about it. He recently asked Miles, who is now infirst grade, why Miles doesn't go to a resource room. But why tell him? Giving him a name for the difference heis beginning to grasp means letting him begin coping withthe issues that will remain after his intervention fadesaway. It's strange to be thinking of the path to adulthoodfor 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 whofell off a train and is running to get back on. Time andagain 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'thave autism, that other children he knew did. But he also had a lot of good questions. He knows thatLarry gets tutoring in reading. Why doesn't that mean thathe has autism? and I had looked at an article about akindergartner with cerebral palsy. Could that boy getbetter? Which was worse? And he kept on thinking. Earlier this month, at the end ofa day spent on a research study, he was offered a T-shirtwith a picture of a brain. He angrily refused it. "I don'twant to wear that to school," he said. "Nobody else in myclass has autism." In the car, he wept, asking "Why doesn't anybody else haveautism?" The next night, during a sleepover, he told Larryabout 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 peanutbutter!" he said, and laughed. He had taken a chance and learned a lesson: Larry caresabout him, not his label. It made me realize: from now on who turns out to beis going to be shaped more by him than by the work beingdone for him. will be his own intervention. O'Neil is deputy editor of special sections at TheTimes. http://www.nytimes.com/2004/12/29/education/29autism.html?ex=1105334391 & ei=1 & en=de0685ce6d4c1919