Lowcountry Autism Foundation

« Back to Months

October 2008 Archive

Date:	10-29-2008
Title:	O'HANLON and SPELMAN: Autism agenda beckons
Author:	Michael O'Hanlon and Stuart Spelman
Publication:	Wednesday, October 29, 2008
Article:	In their last debate, Barack Obama and John McCain both graciously expressed concern about children with autism. Mr. Obama in particular then spoke about the need for more research funding to understand the causes of this prevalent handicap. We concur. But that is hardly the extent of what the candidates need to understand about the state of autism in the United States today. Preventing future cases is crucial, but so is addressing the huge unmet needs of the more than 1 million Americans already afflicted. Here’s an example. At age 2, little Olivia was diagnosed with an autism disorder. Unable to speak, she preferred to sit in the corner of the room and repeatedly push her mini-Ferris Wheel hundreds of times in a row. She did not look people in the eye; she did not try to attract their attention by pointing with her index finger like normal toddlers. She was largely oblivious to, and uninterested in, other kids around her. She even lost the three or four words that she had learned the year before. Four years later, after 30 hours a week of a type of intensive intervention that resembles speech or occupational therapy, Olivia was in regular kindergarten, following class discussions and interacting with her peers. She still was limited in her use of language, and had trouble keeping up with peers socially - but at least she was imitating and learning from her peers. Her future was still very uncertain. But her prospects for graduating from school, holding a job and having at least some real friendships had gone from nil to rather promising. Those four years of preschool intervention came at a high price - about $75,000 a year. Medical insurance paid for none of it. Claiming that the therapies, which fell under the general billing of applied behavior analysis or ABA, were still "experimental," Olivia’s insurance plan flatly denied coverage. Counting on the fact that mental and cognitive ailments have often been viewed as second-class issues by America’s health care system, the insurer was confident it could escape with this bogus excuse. That was the case even though the National Academy of Sciences, American Academy of Pediatrics, and other key organizations endorse precisely the therapy regimen that Olivia followed - and even though ABA has been repeatedly shown to help up to half of all children with autism wind up mainstreamed in school, with the other half showing major progress as well. It is time for this to change. We still don’t know what causes autism. There are probably multiple causes, mixes of genes and environmental factors expressed in unique ways. Autism often is related to a number of other specific medical issues such as major digestion-system difficulties and seizure disorders. Whether Olivia’s problem is viewed as mental or medical or both, any treatment addressing it and meeting scientific standards for effectiveness should qualify for insurance coverage - no less than for someone whose brain had been injured by a car accident or stroke or brain tumor. To be sure, ABA is expensive. But the $300,000 that Olivia’s treatment required compares to the expected tab to government of well more than $1 million for a lifetime of unemployment - or several million for a lifetime of institutionalization. Given that 25,000 American kids a year are diagnosed with an autism disorder, such treatments could add hundreds of millions of dollars a year to the costs of insurers - real money, but by any estimate well under half a percent of current U.S. health-care expenditures. Look at it a different way. If parents of a kid like Olivia are working-class, and also committed to do the best for their kid like most parents, an autism diagnosis will present them with a Hobson’s choice: go deeply into debt to fund that $300,000 themselves or deprive their child of most therapy until she becomes the ward of the state educational system at around age 6. Unfortunately, the latter course is probably a prescription for abandoning most hope for Olivia’s improvement, since the early intervention years are so crucial and since autism requires tailored, special therapies rather than the general special education that most school districts provide. No doubt, ABA and other autism therapies have their limitations. But who would deny treatment to a cancer patient just because the prospects for survival are no better than 50 percent? And who would deny an accident victim intensive therapies just because he or she may never recover fully? To date, only seven states - Indiana, Texas, South Carolina, Arizona, Florida, Louisiana and Pennsylvania - have mandated that ABA be reimbursed under private health insurance plans within their jurisdictions. It is time for that to change. It is also time for the federal government to do its part by way of setting a good example. Specifically, the Office of Personnel Management should follow the military’s lead in insisting that federal health plans reimburse for autism therapy. If our nation’s armed forces can, at a time of war, find the compassion and the means to take care of children with autism, so should the rest of us. Mr. Obama and Mr. McCain are right about the importance of research, but we need not wait for more investigations to do right by those already suffering from this severe yet treatable challenge.

Date:	10-25-2008
Title:	Stomping Through A Medical Minefield
Author:	By Claudia Kalb
Publication:	NEWSWEEK Published Oct 25, 2008. From the magazine issue dated Nov 3, 2008
Article:	Paul Offit—salt-and-pepper hair, wire-rimmed glasses, Phillies fan—hardly seems like the kind of guy who’d receive a death threat. He’s a father who likes to hang out with his teenage kids, a doctor who wears khakis until they’re frayed. But Offit, chief of infectious diseases at Children’s Hospital of Philadelphia and the nation’s most outspoken advocate for childhood immunizations, is at the center of a white-hot medical controversy. He believes passionately in the safety of vaccines; his enemies, many of them parents who blame these shots for their children’s autism, do not. Offit says he’s been harassed in public, and received threatening letters, e-mails and phone calls. One August morning, his wife, Bonnie, sent him a message before he spoke at a New York press conference promoting vaccination. Worried that protesters rallying outside the event might turn violent, she warned: "Be careful." Immunologists were hardly the target of such wrath when Offit, 57, entered the field almost 30 years ago. But today, frustrations and fears about a mysterious brain disorder that strikes up to one in 150 kids have given rise to the most angry and divisive debate in medicine: do vaccines trigger autism? Offit, a vaccine inventor, says "no." His critics, who vilify him routinely on autism Web sites, say the question is still very much open. They think he’s arrogant and a mouthpiece for Big Pharma. One recent post: "Offit should be prosecuted for crimes against our children." After the death threat—a man wrote, "I will hang you by your neck until you are dead"—an armed guard followed Offit to lunch during meetings at the Centers for Disease Control and Prevention. But the scientist refuses to back down. In his new book, "Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure," Offit takes on his critics full-force, challenging them to prove the science wrong. Fearing for his safety, he isn’t doing a book tour. "People think of me as this wild-eyed maniac," Offit says. "If I sat down with them for 10 minutes, they’d see that my motivation is the same as theirs. You want what’s best for kids." Asked how he ranks the intensity of the vitriol aimed at him, Offit says simply, "Abortion, doctors who perform abortions." Nobody’s firebombing pediatricians’ offices, and there’s no moral dilemma here about when life begins. But the overarching question—what happened to my baby?—is still impossible to answer, and the anger is real and it’s deep. Some parents of children with autism tell stories with an eerily similar start: an infant who was happy and healthy until she got her shots. Then, suddenly, she lost eye contact and language. Parents’ dreams for their babies are buried in sadness, their pockets are emptied to pay for therapies, their worries about their children’s future haunt them even as they’re trying to get through the screaming, splattered minutes of the day. Parents of children with autism are a diverse group. Many don’t believe vaccines are to blame; they’d like to see attention shifted to better services for their children. But those who think vaccines are the culprit will continue to fight a government and pharmaceutical industry they do not trust. Such concerns have spread beyond the autism community. Choice has become a critical issue; a few weeks ago, parents rallied outside the New Jersey State House, protesting the state’s requirement that the flu vaccine be given to children attending day care or preschool. (The parents support legislation that would let them opt out.) A recent CDC survey found that less than 1 percent of American toddlers received no vaccines at all by 19 to 35 months. But some parents are skipping certain shots or staggering the government’s recommended schedule, a move that scientists worry could lead to increased outbreaks. This summer, the CDC reported 131 cases of measles, the largest number since 1996. Many of those kids’ parents, says a CDC spokesman, were concerned about vaccine safety. Offit’s book is a critical assessment of the theories that have swirled around autism, the therapies marketed to fix it, and the people—the "false prophets"—who he says have taken emotional and financial advantage of parents seeking a cure. Few scientists are willing to touch this third rail of science publicly; Offit grabs it with two hands. He documents "false promises," like secretin, a hormone derived from pigs that was said to improve symptoms. He dissects hypotheses that gave rise to fears—first, that the measles-mumps-rubella vaccine causes autism and later, that thimerosal, a mercury-containing preservative, is the culprit—then lays out the evidence against them, including more than a dozen studies showing no link. He lambastes the lawyers, doctors, media, politicians and celebrities who he says have fueled the anxiety. The notion that vaccines cause autism, he writes, has "been clearly disproved." It is not easy, however, to trump human experience with science. No matter how convincing the data—and pediatricians, scientists and the CDC want the public to know that it is—doubt lingers. Autism Speaks, the nation’s largest autism-advocacy group, is awarding $3.6 million for research on potential environmental factors, including the vaccine components mercury and aluminum. The group says it must "affirm the public confidence in the safety of vaccines." Lisa Jo Rudy thinks the additional science is warranted. She doesn’t believe vaccines caused her 12-year-old son’s autism, but she won’t rule them out as a factor for other kids. Rudy, who writes about autism for About.com, says the anger directed at Offit is "an enormous overreaction." He’s become a lightning rod, says Rudy, "the incarnation of badness." Still, she’s not surprised that Offit’s absolutism aggravates his critics. "I don’t think he’s walking into this like an innocent into the woods," she says. Recently, Offit set off a flurry of angry postings when he said that a baby’s immune system could handle as many as 10,000 vaccines. Then he upped the ante, saying it was probably "closer to 100,000." Offit’s assessment is based on data showing the vast capacity of a child’s immunological response. Parents who worry that children are getting too many shots too soon (the CDC schedule calls for about 28 immunizations against 14 diseases by age 2) were incensed. "Let’s see how many of these vaccinations Offit can withstand. May I administer the 10,001st?" wrote one user on AgeofAutism.com. The outrage is triggered by Offit’s approach, says Dan Olmsted, Age of Autism’s editor: "He basically says the case is closed. He’s very dismissive of anyone who disagrees." And critics charge that Offit, one of three patent holders of a vaccine against rotavirus—which causes severe diarrhea and kills half a million children a year worldwide—is dependent on drug companies and motivated by greed. They call him "Dr. Proffit." Offit isn’t apologizing. He acknowledges that he got a "small percentage" of the $182 million Children’s Hospital of Philadelphia received when it sold its interest in future royalties for the vaccine RotaTeq. (He won’t give a precise amount, but says "it’s like winning the lottery.") And he has served as both a paid and unpaid member of a scientific advisory board at Merck, which makes RotaTeq. Drug companies routinely hire experts as consultants, despite concerns by some that these relationships can undermine scientific credibility. But Offit says money has never been his motivator. At the age of 5, he spent three weeks in a polio ward, where he was housed to recover from clubfoot surgery. "It caused me to see children as very vulnerable and helpless and, I think, drove me through the 25 years of the development of the rotavirus vaccine," says Offit. Frankie Milley, who started a national organization called Meningitis Angels after losing her 18-year-old son, Ryan, to the disease, says Offit readily hands out his number to parents concerned about vaccine safety. "He truly hurts for children who are suffering or who have died," she says. Scientific studies cannot prove a negative, so researchers must be cautious in the language they use to describe results. Because Offit refuses to garble the message, fellow scientists say, he is the perfect target. "He happens to be blessed with the gift of gab, and he’s been willing to step up and be in the battle," says Dr. Edgar Marcuse, a pediatrician at Seattle Children’s. "It requires a kind of offense and aggressiveness that’s absolutely necessary to set the record straight." Dr. Peter Hotez, a professor and vaccine researcher at George Washington University, says government health officials should take a bolder stand in reassuring the public. Hotez feels as strongly as Offit does about the science (saying vaccines cause autism, he says, "is like saying the world is flat"), but, like other busy scientists, he’s less willing to enter the fray. "Here’s someone who has created an invention that saves hundreds of lives every day," says Hotez, whose daughter, 15, has autism, "and he’s vilified as someone who hates children. It’s just so unfair." Bonnie Offit, a pediatrician, tours the autism Web sites late at night after her husband goes to sleep. "He’s not the man they’ve created an enemy out of," she says. She wishes his critics knew him the way she does—a gentle, sweet, salt-of-the-earth guy. "What I’ve learned in all this is to stick to the truth, talk about the science," says Paul Offit. "It’s not about me, it’s about the data." Above all else, it’s about doing right by the children.

Date:	10-18-2008
Title:	Reaching an Autistic Teenager
Author:	By MELISSA FAY GREENE Published: October 17, 2008
Publication:	NY Times
Article:	On a typical Monday morning at an atypical high school, teenage boys yanked open the glass doors to the First Baptist Church of Decatur, Ga. Half-awake, iPod wires curling from their ears, their backpacks unbuckled and their jeans baggy, the guys headed for the elevator. Arriving at Morning Meeting in the third-floor conference room, Stephen, his face hidden under long black bangs, dropped into a chair, sprawled across the table and went back to sleep. The Community School, or T.C.S., is a small private school for teenage boys with autism or related disorders. Sleep disturbances are common in this student body of 10, so a boy’s staggering need for sleep is respected. Nick Boswell, a tall fellow with thick sideburns, arrived and began his usual pacing along the windows that overlook the church parking lot and baseball diamond. Edwick, with spiky brown hair and a few black whiskers, tumbled backward with a splat into a beanbag chair on the floor. "O.K., guys, let’s talk about your spring schedules," said Dave Nelson, the 45-year-old founding director. He wore a green polo shirt, cargo shorts and sneakers and had a buzz haircut and an open, suntanned face. After his son Graham, 19, was given a diagnosis of autism spectrum disorder (A.S.D.) as a young child, Nelson left the business world and went into teaching and clinical and counseling work. On that Monday, he was instantly interrupted. "I had a very bad night!" Edwick yelled from the floor. "Nightmares all night!" "What was disturbing you, Edwick?" Nelson asked. "What do you think?" Edwick cried in exasperation. "It’s St. Patrick’s Day!" "What’s upsetting about that?" Nelson asked. Edwick dropped his shoulders to relay how tiring it was to have to explain every little thing. "Leprechauns," he yelled. "Oh," Nelson said. "I thought maybe it was the tornado that hit downtown on Friday night." "No, not the tornado!" Edwick yelled. Nick stopped pacing to comment: "Edwick’s not scared of tornados; he’s scared of leprechauns." I burst out laughing and so did the faculty members, while Nelson seemed to relish the interruption rather than find it a hindrance to the morning routine. His hidden agenda was precisely to entertain outbursts like Edwick’s, while making room for a sardonic intelligence like Nick’s. No matter the stated purpose of Morning Meeting, the true purposes were always the same: conversation, debate, negotiation, compromise and the building of relationships. T.C.S.’s only serious admissions requirements are that a boy should have at least some functional language and that there’s a good chance he can become part of the "community" of the school name. The group turned to registering for spring classes. In addition to biology, algebra 2/trigonometry, English literature and U.S. history, there were the electives: Dragon Lore, Comic Books, How to Shop for Bargains and the History of Snack Food. Past electives included All About Pirates, Spy Technology, Ping-Pong, Dog Obedience, Breaking World Records, Unusual Foods and Taking Things Apart. ("I just wish they’d come up with a second-quarter class, Putting the Things Back Together," Nelson told me.) "I knew it!" Edwick complained, mashing about on the beanbag chair. He was disappointed because no one picked the elective he’d proposed: the History of Meat. What makes the Community School unusual is not its student body — plenty of schools around the country enroll teenagers with an autism spectrum disorder. But, like about only two dozen schools in the country, it employs a relatively new, creative and highly interactive teaching method known as D.I.R./Floortime, which is producing striking results among T.C.S.’s student body. (D.I.R. stands for developmental, individual differences, relationship-based approach.) The method is derived from the work of Stanley Greenspan, a child psychiatrist and professor of psychiatry, behavioral science and pediatrics at George Washington University, and his colleague Dr. Serena Wieder. D.I.R./Floortime can be effective with all kinds of children, whether they have developmental challenges or not. As applied by T.C.S., it is an approach that encourages students to develop their strengths and interests by working closely with one another and with their teachers. The goal for students is neurological progress through real-world engagement. With the skyrocketing diagnoses of A.S.D.’s in recent years, parents and school systems are challenged as never before to find techniques to keep these teenagers engaged, productive and nondespairing. Boys with A.S.D. (they outnumber girls four to one) who were difficult to console, to teach, to restrain at age 4 or 8 can be nearly impossible for parents and teachers to manage and to steer at 14 and 18. While a 25-pound toddler’s tantrum is wearying, a 150-pound teenager’s tantrum is dangerous. Puberty and young adulthood take many of these young people unawares. How best to serve this population remains a subject of debate, because autism is a "final common pathway" diagnosis, meaning children arrive here from different points of origin, are troubled by a wide variety of issues and respond to different strategies. "You meet one child with autism and, well, you’ve met one child with autism," says Linda Brandenburg, the director of school autism services at the Kennedy Krieger Institute in Maryland. Given the wide range of expression in autism and related disorders, there is no one-size-fits-all intervention. "We now know that there are several different models that seem to work — some more behavioral, some more developmental, some more eclectic," Dr. Fred R. Volkmar, director of the Yale Child Study Center, told me. "What we really need to be doing, what the law says, is design programs around the kids rather than force kids into a program." The vast majority of programs for autistic youth in the U.S. use an approach called Applied Behavior Analysis, in which teachers and therapists use well-established techniques of reward and punishment to shape a student’s actions toward goals like toilet training, learning vocabulary or completing a puzzle. A typical A.B.A. lesson rewards memorized responses, specific behaviors and compliance to external directives — "Pick up the fork, Jared." An instructor may move the child’s arm, hand and fingers to model the desired behavior. The child is then rewarded — with praise, with hugs, with a treat — when he performs the act correctly. As the first method to work with profoundly self-absorbed children and to demonstrate that progress could be made, A.B.A. — which came to national prominence in the late 1980s — has been a lifesaver for countless families. Critics worry that the method focuses on modifying the symptoms rather than addressing the underlying disabilities, and many say they fear that A.B.A.-trained children often do not "generalize," that is, take a behavior learned in one setting and apply it in another. A child may learn to make eye contact in response to "How are you?" and to reply, "Fine, how are you?" But such rote memorization does not give the child the intuition to know when a stranger is to be greeted warmly and when to be avoided, and it does not enable him to meet his grandmother with greater warmth than the grocer. "All teachers and therapists use elements of behaviorism," Nelson told me. "As an intervention for autism, the A.B.A. movement was one of the first to suggest how intensive the intervention has to be — maybe 40 hours a week — to see results. This notion of intensity has been valuable to everyone that followed." The Community School — with a teaching staff of 12 and a $25,000 tuition — employs the intensity but not the methodology of A.B.A. Rather than spend time on a student’s mastery of a skill preselected for him by an adult, the idea is to harness a student’s energy and desire to learn. As a student interacts with peers and teachers, solves problems and expresses his ideas, his behavior should naturally begin to lose its rough edges. The essence of Floortime is that a person learns best when self-motivated, when an inner drive sparks the acquisition of skills and knowledge. As with A.B.A., achieving D.I.R./Floortime’s far-reaching goals for students requires intense interaction — a wooing of a child from his or her remove — for as many hours of the day as parents and teachers can physically sustain. Dr. Greenspan would like to see an autistic child productively interacting with an adult for most of his waking time, seven days a week. Those drained parents who have the means hire therapists and trained baby sitters to help them approximate that schedule, during either home-schooling days or out-of-school hours. Because the goal of D.I.R./Floortime is the kindling of a student’s curiosity, intelligence, playfulness and energy, the lessons can take on a spontaneous, electric quality. I have seen sessions with young children during which the child and his or her therapist or parent tumbled across the house, behind the sofa, into closets or onto the porch, picking up balls, puppets, costumes, books and snacks along the way. At T.C.S., classes can look like debates between equals; school days can include board games, sports, plays, science experiments, music, art, ropes courses or rafting trips in which all students and teachers playfully compete, contribute and perform. All the boys at the school probably have average or better intelligence. Onlookers might call a few "high functioning" (though that adjective has no clinical meaning), and T.C.S. is an accredited high school and middle school, offering college prep and high-school courses to students able to complete a conventionally rigorous course of study. (Other students pursue less-demanding tracks oriented toward getting a G.E.D., attaining job skills or developing independent-living skills.) So it’s not all fun and social time. But rote learning is never the goal; the goal is that the students should be able to think, to feel, to communicate and to learn. Most of the kids are making the first friends of their lives here. T.C.S. does not promise miracles. It does not promise to be a perfect fit for every teenager with an A.S.D. Dave Nelson does not invest great faith in the possibility of leaving the autism spectrum behind, no matter how much parents (like himself) would love to believe it. The breakthroughs at T.C.S. are subtle rather than headline-grabbing, noticeable at first only to the adults closest to the kids and to the students themselves. But for these families, any forward motion can inspire a moment of real hope and happiness, and quite remarkable progress happens every day. Stephen, 17, a solidly built boy with a sweet face under a heavy thatch of bangs, entered T.C.S. in 2005 prone to blowups of alarming power. His parents adore their son and have been whipped about like sailboats by his furies. His first year at school, during group construction of an outdoor marble-run, a boy fumbled and a marble dropped. "I am going to assassinate him," Stephen exploded. "I. Will. Behead. Him." Stephen’s academics are top-notch, but the stance of the Community School is not to ignore a student’s psychological deficits while skipping ahead to schoolwork or life skills. It doesn’t matter that Stephen is at home with algebraic theorems if he is going to react like a toddler when ambushed by a mad or sad feeling. Ty Martin, 14, is a cute and curly-haired guy who lives in terror of loud or strange noises. The faux thunderstorm in the produce aisles at the grocery store makes it difficult to take him shopping. A classmate’s coughing or a siren in the distance distracts him from schoolwork. His mother often was obliged to retreat to a windowless basement room at home, hugging and soothing her son when the outside world — especially lawn crews next door with leaf-blowers — overwhelmed him. "He doesn’t like crows," Judy Martin told me last spring. "If crows are at a park, he’ll go from happy to berserk in five seconds. If we go to a restaurant, we’re all on edge, praying the bartender doesn’t turn on the blender." Sam Gross visited San Francisco with his mother two years ago at age 15. During a tour of Alcatraz, the handsome olive-skinned boy climbed a nearby fence and prepared to dive. Had his mother not spotted him and screamed, Sam would have been injured or killed by falling onto the rocks. But he was not trying to kill himself. He planned, as he explained in his monotone voice, to turn into a merman and swim back to the mainland. Then he began to deteriorate. For two years, he spent every day in a ball under his blankets, rising only to pound either side of his head with such ferocity that two bald spots bloomed under his fists, then dangerously swelled. He had to be sedated to stop the self-battery. By the time Sam reached the Community School, he was nearly incommunicative. Whenever he began using his head like a punching bag, the teachers asked him to stop, and he did, but otherwise showed no sign that he heard them. Students arrive at T.C.S. trailing long histories of school failure and humiliation, suspension, expulsion, truncated transcripts, social isolation, victimization, self-loathing, suicidal ideation or years of home-schooling patched together by mothers forced to leave their jobs. "On our first visit with Dave Nelson, Ty started screaming: ’I hate this place! I want to leave right now!’ " Judy Martin says. "Most principals don’t want to work with a kid like that. But what I saw on Dave Nelson’s face was ’I can work with a kid like this.’ " Many prospective parents begin to weep during their intake interviews with Nelson. For them and their children, this place represents something of a last chance. While there is no direct relationship between Dr. Stanley Greenspan and the nation’s D.I.R./Floortime schools, other than one of mutual respect, the theoretical underpinning of these schools relies on his argument that human intelligence itself is constructed out of the warm back-and-forth signaling between child and parent, beginning at birth. Jean Piaget located a child’s investigation of causality in the material world, for example, with experiments like pulling a string attached to a bell, but Greenspan and his colleague Serena Wieder see these insights occurring in the emotional realm, when a baby learns that his or her smile brings the parent’s smile. Brain development is not a solo pursuit but a rich and complex flowering that occurs only in the hothouse of human relationships. What does this have to do with autism? A child born at risk of an A.S.D. has cognitive and sensitivity issues that inhibit engagement. Pleasures enjoyed by a typical baby can upset him: a mother’s face seems too close, so the infant cranes away; the father’s tickles may produce fear reflexes rather than laughter. Meanwhile the sunlight is burning his eyes, the diaper scrapes his skin and the baby begins avoiding interaction with people at the cost of normal brain development. I begin to picture the brain metaphorically as a tangled ball of Christmas lights. When you plug it in, there are strands that light up perfectly and there are dark zones where a single burned-out bulb has caused a line to go out. If the bulb for Exchanging-Smiles-With-Mother doesn’t light up, then Empathy won’t be kindled farther along the strand, or Playfulness, or Theory of Mind (the insight that other people have different thoughts from yours). The electrical current won’t reach the social-skill set, the communication skills, creativity, humor or abstract thinking. According to the D.I.R. perspective, emotion is the power source that lights up the neural switchboard. D.I.R./Floortime’s goal is to connect autistic students with other people as a way of fueling their cognitive potential and giving them access to their own feelings, desires and insights. The latest findings in the field of neuroplasticity support D.I.R.’s faith in the capacity of the human brain to recoup and to compensate for injury and illness. "Early intervention is optimal," Dr. Greenspan told me, "but it’s never too late. The areas of the brain that regulate emotions, that sequence ideas and actions and that influence abstract thinking keep growing into a person’s 50s and 60s." T.C.S. students are masters of withdrawal, and for the D.I.R. model to work, each student must be an active partner in his own education. But how do you ignite the enthusiasm of an autistic teenager who has long since walled himself off from the outside world; who uses little language or who screeches in random yelps or vulgarities; who flips out when pried away from his computer game; who speaks to you, if at all, in long monologues on arcane subjects with zero interest in your response? What do you use as a staging ground for a relationship with an increasingly furious and despairing adolescent? The Floortime technique might be summed up as: "Follow the child’s lead and challenge the child." It is most easily visible on the videotapes documenting Dr. Greenspan’s 25 years of clinical work with younger children. In each video, the gangly psychiatrist crouches on the floor of his comfortably shabby home office in Bethesda, calling instructions to parents about how to catch the attention of and interact with their remote-seeming children. "I treat everything the child does as having a reason — to feel calmer, for example, or to feel excited," Dr. Greenspan told me. "Often the parents have notions of what the child should be doing, so they’re trying to control the child rather than build on the child’s natural interests." In my favorite video, a 30-something husband and wife flank their 4-year-old daughter; the husband, in round horn-rim glasses, sits forward on the sofa; his wife curls up on the floor nearby. Their daughter, with chopped-off blond hair and a doughy face, looks to me like Helen Keller, pre-Anne Sullivan. Seeming almost blind, deaf, mute and mentally retarded, she bounces from sofa to table to wall. She is without affect, her movements ungainly and her eyes unfocused. She makes slurping sounds, as if she has reached the bottom of a drink with a straw. "We’re going to try to get a continuous flow of back-and-forth going here," Dr. Greenspan says. The mother smiles sadly, knowingly. "That would be nice," she says. "We’re going to build on what she does," the doctor says. The girl is flapping a plastic toy in her hand. "Will she give it to Daddy?" Dr. Greenspan asks. "Can I see that?" the father asks as the child roams the room. The child seems not to hear him. But then the girl, traveling by, indifferently drops the toy into his outstretched hand. Delighted, the father says: "There’s a star on it! And there’s a triangle!" "Here you’re losing her, Daddy," Dr. Greenspan says, and sure enough, the girl escapes and heads for a wall. "If you’re trying to educate her with complicated language that she’s not processing, then you’re going to lose her. You want to change your orientation from educating her to interacting with her." The child picks up a bright plastic flowered eyeglass case off a table and twiddles it. "See if she’ll give it to you," the doctor prompts. "Can you give it to Mommy?" the mother asks, and surprising everyone, the girl hands it over. "Thank you!" the mother says. The mother hides the eyeglass case behind her on the floor. The girl treads in place for a moment, swinging her arms and slurping. She begins to laugh a strange, heaving laugh. "Huh-huh-huh!" The mother moves a little to show that she’s sitting on the eyeglass case, and the child dives for it. "Good, good!" Dr. Greenspan cheers. "Can I have it back?" the mother asks. The mother hides it inside her own sweater, half-exposed. "Let her get it! Let her get it! Let her get it!" Dr. Greenspan says in excitement. It is of paramount importance to him that the child initiates her own ideas and motor plans. Every time her parents start to physically turn or steer her, he stops them, crying: "Let her do it! Let her do it!" The mother next slips the eyeglass case into the bib of her daughter’s pink overalls, and the girl stops in her tracks. Dr. Greenspan is prepared to leap over furniture to block the parents from giving her a clue. Suddenly, slowly, the girl’s gaze drops. . . . She finds the eyeglass case! In her own pants! "Ooh! Ooh! Ooh! Ooh!" she says. "Make it more complicated!" the psychiatrist pleads. "Can we go give it to Daddy?" the mother asks. The mother walks over to the father, who hides the eyeglass case in his shirt. The girl freezes in confusion. The psychiatrist loves a moment like this and tries to prolong it. He sees momentary frustration as a vitally creative occasion. He urges parents to be "playfully obstructive." He’s not after results; he wants to see a child thinking. "She can do this," he advises them. The girl slowly looks down, plucking at her overalls. For a moment it seems they have lost her. But — no — she’s looking inside the bib, where she last found the eyeglass case. It’s not there. Again she freezes. She must be thinking, "Mommy went to Daddy. . . . " Slowly she turns toward her father. The expression on the father’s face, when his daughter plucks the eyeglass case from his shirt, is of heartbreaking gratitude. A moment later, he pitches the eyeglass case over her head to his wife. The girl turns and beholds her beaming mother holding the eyeglass case. "Ooh! Ooh! Ooh!" she says. Mom pitches the case back to Dad, and when the child turns to run to her father, she skips in her delight, her face radiant, making a hoarse sound of laughter. Children with autism — especially Asperger’s — are famous for all-consuming interests in Matchbox cars, bus maps, train schedules, oscillating fans, Civil War battles, baseball statistics, black holes, dinosaurs, chess or Star Wars. While most programs try to discourage these obsessions, D.I.R./Floortime argues that they can offer openings into relationships. Does this work? Parents of T.C.S. students say that it does. Most speak in glowing terms about the school’s lifesaving impact on their families. Outside experts are more cautious, reluctant to give any one approach a gold medal when there are so many variables, including the profiles of the students admitted to T.C.S. in the first place. "Stanley Greenspan is an engaged and enthusiastic clinician," Dr. Volkmar says. "People are attracted to Floortime because it is respectful of the child and the child’s wishes. He wants to follow the child’s lead. I would imagine that more able children do produce leads that are worth following — I’ve seen kids with Asperger’s do well in Montessori programs too — but what if the child isn’t doing much that you’d want to follow? I wonder if following the lead of a child who’s doing nothing but body rocking results in a roomful of people all body rocking with him." Dave Nelson says: "T.C.S. is a school, so I’d argue that our success should be measured by how well we educate our students. The boys have far better attendance rates than at their previous schools. They have far better emotional regulation — many could not attend school before due to their outbursts; while here, emotional regulation is core curriculum. Many were depressed to the point of suicidal ideation at their previous schools; that’s not happening here. Some were victims of bullying, some were aggressors at their previous schools; not here. All our parents report that their children are functioning better, are happier and are better communicators, thinkers and learners." Judy Martin says: "My son Ty’s progress has been monumental. He doesn’t cry in dark basements anymore. He isn’t entirely focused on himself; he is learning real empathy. He never liked school, and now he loves it. Every day this past summer he asked me when he could be with Dave Nelson. This is a child who never cared about teachers or friends. Now he tells me he loves them. I chatted with Stephen the other day by the vending machine as his money got stuck. He was problem-solving rather than blowing up. We rode the elevator together, chatting about the problem, while he decided to go find a teacher to help him." One morning at school, the fire alarm went off. My first thought — like everyone’s — was, Oh, my God —Ty! We descended the stairs to the parking lot. Ty was within a circle of T.C.S. teachers. "It was Elana!" he yelled to everyone about one of the teachers, who had been trying to prepare a snack for her class. "Elana burnt the popcorn in the microwave!" Poor Elana Himmelfarb, covering her face, not knowing whether to laugh or cry, said again and again, "I am just so, so, so, so sorry, Ty." He was trying to forgive her, but he kept asking, "Elana, why did you make the fire alarm go off?" His face was red, his curls were plastered back with perspiration and he was rocking a bit, long after the alarm had been silenced. Back upstairs, when the smoke cleared, Ty huddled in a beanbag chair with Rebecca Richter, one of the teachers, beside him. "I hate that noise," Ty said. "That’s a bad noise. That has a witch’s voice." "You really didn’t like that noise," she agreed. "This can NEVER HAPPEN AGAIN," he sobbed, demanding that Rebecca promise him. "This will never happen again, will it? This can never happen! "I need you to call my mom," he said, weeping. "I’m having a very bad day. Will you call my mom? I need her to come get me." I imagine a region of Ty’s brain blinking hard, a fistful of tiny red lights setting one another off: Panic! Panic! "If we can keep Ty engaged with us, it means that he is harnessing and organizing his energies in order to interact," Nelson told me later. "By keeping him connected, we won’t let him be kidnapped by random fragmented thoughts. If you aren’t engaged with other people, then you are completely at the mercy of your own regulatory system. Think about a situation where you were overcome with distress and how being able to tell someone helped you avoid becoming uncontrollably distraught." Gently Richter moved Ty from unreality ("the witch’s voice") onto solid ground ("I’m having a bad day"). Given the tools to hang on, Ty survived until the end of the school day. And the breakthroughs continued. "When Ty came home that day, we talked through the events, as the school has trained me to lovingly do," Judy Martin told me recently, "and Ty said, ’Mom, I feel bad for Elana, because she didn’t mean to do it.’ " ’Do you think she felt embarrassed?’ I asked him, and he said yes. This moment was huge: Ty has always struggled with seeing the viewpoint of others, and here he was able to take a moment that frightened him and look at it from Elana’s viewpoint. We go to restaurants all the time now, and Ty couldn’t care less about the blenders. Lawn crews arrive next door, and they don’t faze him." When Sam Gross, now 17, arrived at T.C.S., he tripped along down the hall on the balls of his feet, rolling his head, thrumming on his chest with his fingers, humming to himself, lost in other worlds. The only points of entry he offered were during serious flights of fancy. "What this school needs," he murmured in his low, resonant voice one day to a teacher, Lucie Canfield, "is a magic cabinet." "What would it do, Sam?" Lucie asked, delighted. After a long pause he said, "Turn Sam into Samantha." Sam wanted to travel back in time, he explained, to when he was a little girl; then he changed his mind and wanted to use it for teleporting. Sam’s parents and his psychiatrist were initially less than enthusiastic about the magic cabinet: "Let’s not get started with this stuff here," they said. But Lucie had already asked Sam, "What would a magic cabinet look like?" Sam had replied: "Cow-colored." Lucie pushed poster board and colored pencils at Sam and said, "Show me." Dave Nelson agreed. This was the clearest opening they’d had from Sam Gross. Everything Nelson knew about Floortime told him to follow the boy’s lead. "Let’s see where this goes," he told Sam’s parents. Sam finished several quite beautiful drawings of a tall, rectangular closet. It would have a blue curtain and a bell stand on top, with a chain he would pull when he was finished transforming or teleporting. Nelson brought in a refrigerator box, and Lucie and Sam painted it in a nice Holstein pattern of black on white. "We made a point of always saying to Sam not that we were building a magic cabinet, but that we would pretend with him," Lucie tells me. "I explained that magicians used tricks to make people think they disappeared." T.C.S. would facilitate this exploration, with Sam, of the frontier of fantasy, with the expectation that he would encounter some reality along the way. The special day arrived, and Sam stepped into the cabinet and drew the curtain. Dave waved a magic wand and read words Sam had written: "Abracadabra-a-whirl. Let Sam turn into a girl." There was silence inside the box. Then Sam called, "Do it again!" Dave chanted the words again. Silence. Then: "Let Lucie do it!" The teacher took the wand and gave it a try. Sam peeked out, still male. "This is not the right cabinet for turning into a girl," he said in consternation. "This is the cabinet that turns you into Paul McCartney." He exited. At home that night, Sam looked up magicians in the Yellow Pages and booked one to come to school the next day. Dave Nelson canceled. It was time for reality to intervene. Back at school, Sam spent the week focusing on how to teleport out of the cabinet to surprise folks in the cafeteria on the ground floor. Then one day he made an unusual request of Lucie Canfield: he needed help cutting a back door in the box that would allow him to slip away like a stage magician. It was a striking and brave acknowledgment of the material world. Sam never staged his trick, as it was real magic that excited him. And he muttered, over the next few weeks, seditious thoughts along the lines of, What kind of school is this that doesn’t provide a real magician? The Magic Cabinet still stands in the art room, bell-towered and cow-colored. Many of the students enjoy stepping behind the blue curtain now and then for a moment of quiet remove from the world or to prepare to burst back upon the room in an assumed role. "It’s expanded from a product of Sam’s fantastic imagination to something of real purpose," Judy Martin told me. "Kids peek out their heads as characters from books they’ve been reading, changing their voices and facial expressions." The Magic Cabinet has come to stand for what the Community School offers these students: the possibility of transformation.

Date:	10-17-2008
Title:	People with autism make rational decisions
Author:	UPI - Oct. 16, 2008 at 1:50 PM
Publication:	© 2008 United Press International, Inc. All Rights Reserved.
Article:	LONDON, Oct. 16 (UPI) -- People with autism-related disorders are less likely to make irrational decisions and are less influenced by gut instincts, British researchers said. Ray Dolan of the Wellcome Trust Center for Neuroimaging at the University College London said decision-making is a complex process, involving both intuition and analysis: analysis involves computation and more "rational" thought, but is slower; intuition, by contrast, is much faster, but less accurate, relying on heuristics or "gut instincts." Participants in the study performed a task involving deciding whether or not to gamble with a sum of money. The study, published in the Journal of Neuroscience, found people with autism tended to be more consistent in their pattern of choices, their greater attention to detail perhaps helping them avoid being swayed by their emotions. "During social interactions a lot of information must be processed simultaneously, making this a very complicated computational task for the brain," Dr. Benedetto De Martino said in a statement. "To solve these complex problems we rely on simplifying heuristics -- gut instincts -- rather than extensive logical reasoning. However, the price that we seem to pay for this ability is that sometimes irrelevant contextual information leads us to make inconsistent or illogical choices."

Date:	10-14-2008
Title:	Program Aims to Enhance Learning Skills of Children With Autism As Young As Three Years-Old
Author:	By Steve McConnell
Publication:	Wayne Independent - Mon Oct 13, 2008, 06:23 PM EDT
Article:	WAYMART - At Robert D. Wilson Elementary School, children with autism take center stage as part of an early intervention program that sees immediate results. In 2003, the school joined a new program, sponsored by the state Department of Education, called the "Verbal Behavior Project", which aims to enhance the learning and language skills of autistic children through a non-traditional approach. And it has been a wonderful success, said Danielle Vokes, a speech therapist with Western Wayne School District. "We’ve had non-verbal children talking up a storm," she said at an open house that showcased a unique autism classroom at the elementary school on Oct. 13. The elementary school’s classroom is considered an "autism model classroom", one of only 13 in the state. Autism is an brain development disorder that begins affecting children before they reach three-years old. It can cause impaired social interactions and communication. At the school beginning at age 3, children receive intensive instruction - identifying objects, verbal and motor skills training, among others - that is tailored to each student, said Dr. Lorna Johns, the district’s director of instructional services. The program centers on the child and his or her own particular needs and abilities, said Johns. Autistic children have difficulty conveying their wants or needs, and sometimes that can result in inappropriate behaviors, she noted. She noted that four instructors underwent extensive training to become "Board Certified Behavior Analysts." The instructors try to teach the children how to express their wishes . A first step may involve pointing or reaching for the object desired; through time, students may ask for what they want or identify the object from a picture. Autistic children have difficulty saying exactly what they want, said Vokes, who has earned the certification. Each student is constantly assessed as they work through a myriad of goals, said William Galbraith, an educational consultant with the state education department. "Kids are being worked every minute of the day," he said. Two elementary school classrooms and one at the middle school are earmarked specifically for the program. The program also serves students from Wayne Highlands and Wallenpaupack school districts.

Date:	10-13-2008
Title:	Popular Autism Treatment Often Goes Uncovered
Author:	By DEBBIE CAFAZZO
Publication:	THE NEWS TRIBUNE - October 12, 2008 2:02 p.m. PT
Article:	TACOMA, Wash. -- Grant Fulton is a busy boy. Seated at a child-sized table in his family’s Lacey living room, the 5-year-old kneads a ball of soft, claylike material. He talks about its colors, shapes and textures. Laurie Waguespack, his therapist, subtly switches between play and learning. Her goal is to help Grant, who has autism, gain cognitive skills. Waguespack grabs a deck of picture cards, and asks Grant to name the colors and shapes as she flips through them. "Pentagon. Octagon. Diamond. Black. Circle. Rectangle. Yellow," says Grant, building speed as he identifies 34 of 35 cards correctly. Eight months ago, says Denise Fulton, Grant’s mother, it would have been difficult to get him to name shapes and colors. Two years ago, it would have been impossible. Grant has mastered this only through daily, step-by-step therapy administered by Waguespack and others. "It’s hard trying to rewire the brain," says Fulton. It’s also expensive, with in-home therapy costing anywhere from $15 to $25 per hour. None of it is covered by the family’s health insurance plan. Insurance industry representatives such as Susan Pisano, spokeswoman for the national industry trade group America’s Health Insurance Plans, say some autism treatments aren’t really medical treatments but are more educational in nature. They argue that education is the responsibility of public schools, not private health insurance. But Susan K. Malmquist, a Shoreline educational consultant who works with children with autism, says schools can’t go it alone. "The federal government does not provide enough funding through the IDEA (Individuals with Disabilities Education Act), nor do we have enough local funding," she says. Insurance companies also point out that increased benefits for some means premium increases for everyone. "It is a public policy question," Pisano adds. The question is being debated in state after state, as laws mandating insurance coverage for autism treatments are considered. At least seven states have passed laws targeting insurance coverage for autism treatment. And this year, the debate comes to Washington state with a proposed law by a group called Washington Autism Advocacy that would govern insurance coverage for autism. Last month, the state Department of Health held a hearing on the proposal. For three hours, parents of children with autism told their stories. They spoke of the strain that paying for their children’s treatment places on families and marriages. "We had $200,000 in IRAs," Adam Burns of Sammamish, the father of a 7-year-old boy with autism, told the Health Department panel. "It’s all gone." Burns said that even though therapy is helping his son, he has to cut back on treatments because of the cost. Robert Ott, a Bellevue Realtor, said he spent $68,000 last year on treatments for his 6-year-old son with autism. "We have nowhere to turn for help," he said at the hearing. Without insurance reform, Ott added, "I’ll always be broke. I’ll always have creditors calling." EFFECTIVE OR NOT? The therapy that’s been so successful for Grant Fulton and other children with autism relies on a method called applied behavior analysis (ABA). It uses one-on-one instruction, repetition, rewards and a structured environment to draw children with autism out of their strange, often silent world and teach them the communication skills they’re unable to learn on their own. The goal of ABA is to increase desired behaviors and decrease undesired behaviors by using prompts, cues and positive reinforcement, according to autism experts. Some in the insurance industry argue that there haven’t been enough studies looking at the long-term results of ABA. "A recent review of published peer-reviewed studies doesn’t confirm that ABA is actually proven effective," says Dr. Diane Stein, a medical director for Regence BlueShield insurance in Seattle. She says many studies have shortcomings, such as small sample sizes or no control groups. Still, while the positive effects of ABA-based therapy can vary from child to child, it’s widely accepted by autism experts. The therapy is "well-established in terms of efficacy for children with autism," says Milani Smith, associate director and director of clinical services at the University of Washington Autism Center. "I’m sure there are people who find it controversial. It certainly doesn’t work for every child." For most Washington state families with children who have autism, medical insurance covers none of the cost of ABA therapy. If parents want it for their child, they must pay on their own. At the standard cost of $15 to $25 an hour, 40 hours a week can cost about $50,000 a year. Because Denise Fulton and her husband, Dean, have seen how much individualized ABA therapy has helped Grant, they pay for it themselves. They also pay for a special diet and alternative medicine treatments that they say have allowed their son to flourish. To afford Grant’s therapy, the Fultons drive a used car. They have tapped into savings but are trying hard not to touch their 401(k) retirement fund. The total out-of-pocket cost for Grant’s therapy, diet and treatments are "pretty much like buying a new car every year," says Dean Fulton. A HUGE TASK! Arzu Forough, a Kirkland mother of two sons with autism, would like to change the insurance coverage picture. She’s leading an effort in Washington state for legislation to mandate insurance coverage for autism and related disorders, known as autism spectrum disorders (ASDs). "We have a huge task on our hands to educate Washington that autism is treatable, and that it is an epidemic that is not going away," says Forough. The Washington proposal, backed by Washington Autism Advocacy and the state chapter of the national group called Autism Speaks, would require insurance companies that cover public employees in Washington state and sell policies to the public to include coverage for diagnosis and treatment for individuals with autism to age 21. The proposed legislation would: -Require coverage for ABA-based treatments, along with coverage for medication, occupational, speech and other types of therapy as long as they are prescribed by a licensed physician or a licensed psychologist. -Prohibit insurers from dropping coverage of individuals with autism based solely on their diagnosis. Forough and other parents say this has happened. -Remove limits on the number of visits an individual can make to an autism treatment provider. -Cap benefit payouts for treatment of autism at $50,000 a year a figure that would be adjusted for inflation annually. An initial analysis by the Washington State Health Care Authority, which administers health benefits for the state’s public employees, estimates that the new law could increase premium costs for those employees by at least 1 percent or slightly more. That could mean an additional $17 million or more in 2010. Washington state’s Autism Task Force, appointed by the Legislature, made an autism insurance mandate its highest priority in a report published in 2007. "Insurance that covers evidence-based services for ASD is severely lacking in Washington," the task force noted in the report to the governor and Legislature. In the absence of such coverage, parents must pay for therapies and treatments themselves. Corey and Lorina Gardner of University Place, seeking treatment for Zander, their 5-year-old son who has autism, have abandoned insurance coverage. Corey Gardner owns his own business, while Lorina Gardner is a stay-at-home mom for Zander and his older sister, Vegas. They lean toward alternative medicine treatments not covered by insurance. They decided that instead of paying for insurance that Lorina Gardner says was largely useless, they would spend money on Zander’s treatments, including in-home ABA therapy and a special diet. "We think and act outside the box to heal our son," says Corey Gardner. And, "it works for our child," says Lorina Gardner. MAGNANIMOUS MICROSOFT While the proposed law could help many Washington families, it wouldn’t reach those who get their insurance through some of the state’s largest employers. Many large companies are self-insured, which means they contract with an insurance company to administer their plans but actually pay the claims to employees themselves. "Under federal law, states cannot tell self-insured employers what benefits they can offer," says state Sen. Karen Keiser, D-Kent, chairwoman of the Senate health care committee. But Keiser says that state insurance mandates do tend to raise the bar for everyone. "Large employers like to retain and recruit employees," she says. "They tend to meet the standard quickly." One large self-insured employer is already setting the standard: Microsoft has covered ABA therapy for children with autism since 2001. The addition of autism coverage came at the request of employees, says Julie Sheehy, who manages the company’s insurance benefits for U.S. employees. "Microsoft has a long history of striving to offer comprehensive benefits packages," she says. Sheehy wouldn’t outline specifics of the plan, nor would she say how much the added benefit has cost the company. But the benefits aren’t limited by a child’s age, and employees do pay a portion of the treatment costs. Ronnie Thibault of Monroe, Snohomish County, is the mother of a child with autism, and her husband works at Microsoft. "When my son was diagnosed at age 5 two years ago, I didn’t know how privileged we were," she says. Thibault says that when she deals with health care providers, all she has to do is tell them her husband works at Microsoft and her son’s treatment is "completely free of hassles. All families deserve what my son is getting." RESTRICTION RATIONALES Why is insurance coverage for autism so restrictive? The insurance industry argues that some treatments including ABA therapy should be the responsibility of public schools, which are mandated under federal law to provide services to disabled children from ages 3 to 21. School districts routinely offer speech therapy, occupational therapy and physical therapy, says Doug Gill, director of special education for the state Office of the Superintendent of Public Instruction. But how many use ABA therapy is unknown, he adds. "Autism is pretty complex, in terms of how it plays out," says Gill. "You have to look at the individual needs of a student and what works best. The issue is what is an appropriate program for the child." Keoni Smith, co-director of special services for the Sumner School District, says that while there has been research focusing on what works for very young children with autism, "there has not really been as much with school-age students, especially secondary-age (middle school and high school) students." Smith says Sumner teachers might use ABA-related or other types of behavioral therapy, but students would be unlikely to receive one-on-one therapy exclusively. "We do have students in our preschool who might receive 20 to 25 hours of services," says Smith. But those hours would likely include both individual therapy and group classroom time, he adds. Vanessa Tucker, a Tacoma special-education teacher with expertise in autism, says the educational and health care systems need to collaborate. "It’s not something any one agency should be responsible for," she says. "The insurance companies say let the schools take care of it," adds state Sen. Darlene Fairley, D-Lake Forest Park, who’s supported past unsuccessful legislative efforts to expand insurance coverage for kids with autism. "But the schools have so much else to do. You can’t just leave kids to be cared for by the schools." Stein, of Regence BlueShield insurance, sees it differently. "Typically, providers of behavioral interventions such as applied behavior analysis are not licensed health care professionals," she says. "Rather, they are teachers and others with training in ABA such as paraprofessionals and parents, and therefore not eligible for health plan coverage as providers." Stein notes that other medical and rehabilitation services for autism are covered, including those provided by pediatricians, physical therapists, occupational therapists and mental health professionals. But parents of children with autism say insurance policies often limit the number of visits per year for occupational, physical or speech therapy, in effect cutting off therapy after a matter of months and rendering it ineffective. "There may be limits on physical therapy or occupational therapy, regardless of the cause," says insurance industry spokeswoman Pisano. "It’s not specific to kids with autism." Jenny and Chris Hazelton of Lacey have insurance that covers occupational therapy for their 4-year-old son, Noah, who has autism. They pay about $40 a week in co-pays for occupational therapy. But Jenny Hazelton says that about once a quarter when Noah reaches his 25-visit limit therapy stops for 45 days or so before he can become re-eligible for coverage. It’s difficult for the Hazeltons to afford both occupational therapy, with its on-and-off coverage, and ABA therapy, which isn’t covered by insurance at all. Due to the family’s medical bills, the couple has never owned a home. "We’re basically spending every dime we have on Noah," says Jenny Hazelton, who worries about what will happen when the family is no longer able to find money for treatment. POTENTIAL ALLIES If Washington’s proposed autism insurance mandate turns into a bill in the January legislative session, it could find some allies in both the state House of Representatives and the Senate. Sen. Marilyn Rasmussen, D-Eatonville, has a grandson with autism. So does Sen. Pam Roach, R-Auburn. Both Roach and Rasmussen have served on the state Autism Task Force. Roach’s son, state Rep. Dan Roach, R-Bonney Lake, has a 6-year-old son, Drew, who has autism. "This is a huge burden on families financially," says Dan Roach’s wife, Melanie Roach, the Olympic weightlifter who recently competed in Beijing. She says their family spent an estimated $25,000 in less than two years paying for ABA therapy for Drew, then stopped last fall due to the cost. Dan Roach argues that mandating insurance coverage for treatment of children with autism would ultimately save tax dollars. He says children who aren’t treated early in life risk becoming dependent on the state as adults. "If you understand what’s really going on with autism, it’s hard to argue," says Dan Roach. "If you want to save taxpayer dollars, it’s much better to do the mandate now." Adds Rasmussen: "If we take care of these kids, if we start early, we can mainstream them in classrooms by the time they are 8 or 9 years old. We are going to make this (new law) happen. It saves money in the long run." State Sen. Keiser predicts the proposed autism insurance law will face stiff opposition from insurers. "It will be hard fought," she says, comparing it to the battle over past legislation that mandated more coverage of mental illness. "These things happen with a lot of effort," Keiser says. "It’s an incremental, painful and harmful method of dealing with health care issues. We can do so much better."

Date:	10-06-2008
Title:	"Parents Urge Passage of Bill to Require Autism Coverage Insurers Would Pay for Treatment"
Author:	By Charity Corkey
Publication:	Thursday, October 2, 2008; Page LZ03
Article:	A busload of Loudoun County parents traveled to Richmond on Monday to speak before a state panel considering a bill that would require health insurers to cover treatment for children with autism. Some brought their autistic children to the hearing, which lasted five hours and featured testimony from parents across the state as well as insurance industry lobbyists. House Bill 1588 would require insurers to provide up to $36,000 a year per child for autism treatments, including an intensive and costly therapy program known as applied behavior analysis, or ABA. ABA, which has been approved by the U.S. surgeon general as a treatment for autism, is rarely covered by insurers in Virginia, and parents who choose it often pay thousands of dollars a year in out-of-pocket expenses. Carol Nunez, a Sterling resident who brought her 6-year-old autistic son, Ethan, to the hearing, said she and her husband, Rick, spent almost $5,000 for therapy services covering potty training. "ABA came into our home at 8 a.m. in the morning till 8 p.m. at night for four weeks," she said. "It was successful. He’s now 100 percent potty-trained at home. "ABA is most effective if applied early," she added. "Had we had insurance to cover [more treatments], I can’t fathom the changes we would have seen." Del. David E. Poisson (D-Loudoun), who sponsored the bill with Del. Robert G. Marshall (R-Prince William), told the state panel that the cost of providing the additional health coverage would be far less than the cost to taxpayers of institutionalizing autistic children who receive insufficient treatment. "Admittedly, in the near term, mandating this coverage could add slightly to the cost of health insurance in Virginia," he said. "But whatever the cost, and no one can say for certain what it will be, it pales by comparison with what it will be if we fail to invest now in early intervention services." The panel, the Special Advisory Commission on Mandated Health Insurance Benefits, will make a recommendation to the 2009 General Assembly on passing the bill. Speaking on behalf of the Virginia Chamber of Commerce, Keith Cheatham expressed concern that the legislation would lead to higher insurance premiums. Doug Gray, a lobbyist for Virginia health insurance companies, questioned whether therapy treatments for autistic children should be considered medical or educational services. "ABA is described as an education service by federal law," he said. "Many borderline health-care services are not covered by health insurance. For example, if a kid with [attention-deficit hyperactivity disorder] needs a tutor or a special school, it would be provided by educators." Poisson, responding to Gray’s comment, said that the ABA program "originates with a medical diagnosis, and only an MD can make that determination. ABA is a necessary medical treatment." Casandra Oldham of Leesburg cried as she told the delegates about her sons Gareth and Korlan, ages 4 and 2, who have been diagnosed with autism. She said she and her husband, Bill, have seen improvement in their sons through the ABA program but cannot afford to pay for the amount of therapy the boys need. Providing both sons with 40 hours of therapy a week would cost the family nearly $14,000 a month, she said. "I’ve been put in a position that no mother should ever be put in," Oldham said. "When I found out that baby Korlan was also autistic, I had to decide: Should I give one more therapy than the other? Or should I give them both equal amounts, but less?" Having run out of savings, the Oldhams are raising money through yard sales, bake sales and car washing, she said.